Fighting Goliath

  

My First Person Accounts of my Schizophrenia

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Invisible Scars

 

Soon after I entered the world, I received my first scar.  As an infant I had pyloric stenosis, a blockage between the stomach and small intestines.  I'm told that it was a rather simple fix, but it did leave a large scar on the right side of my abdomen.  As a child the scar was more of a curiosity than anything else.  I remember making up funny stories to tell my friends about how I got the scar such as "I was wounded in a shark attack."

As I grew older there would be other accidents that left scars as reminders of milestones in my life.   There were scars on my legs and elbows from my time as a high school athlete playing lacrosse, basketball, baseball, and football.  There is the scar on my thumb from one of my first jobs working in a restaurant kitchen where I had an unfortunate encounter with a slicing machine. 

There is a scar on my chin that I notice whenever I look in a mirror.  I got that scar when I was in the Army, driving a M113 tank.  When I hit a bump in the road, my head slammed into the cockpit, and I ended up with a nasty cut that required stitches.

The scars that have had the most profound impact on my life, however, are not ones that left a mark on my skin.    These scars, while invisible to the eye, have left a lasting effect on my life in ways that go far beyond what my visible scars can tell about my life.

In 2003 when I entered the United States Army,  I took those visible scars with me to Fort Knox, Kentucky.  I was taking a break from college when I joined the Army, and the idea of a military experience seemed like a good fit for me.  After basic and advanced training at Fort Knox in Kentucky, I was assigned to my first duty station at Fort Irwin, California as a 19 Delta Cavalry Scout.  Although physically I had met all of the requirements to become a soldier, I was woefully unprepared for the emotional scar that would wound me in a way that I never expected while I was there in the desert.  That wound was the result of a hazing incident that occurred when a few of my fellow soldiers tried to break my spirit by duct taping me into a fetal position.  The desperation I felt during that incident broke something loose inside me and left a mark on my soul that would  change my life forever.

            After that hazing experience I was a different person.  I have since learned that mental illness can be underneath the surface, waiting to push its ugly head out to control a life.   The results of that hazing incident produced a different Me--someone who was suspicious of others, thinking they were going to do me harm.  I was now paranoid and fearful of everyone around me.  I thought people were stealing from me, talking about me in negative ways, and making fun of me.  All this made me suspicious of my fellow soldiers, and I began to isolate myself from them.  Of course, they saw me as a nonconformist, and they kept trying to get me to follow orders.  However, in this new altered state, I was confused about every aspect of life. 

            One particular delusion I had was that I had a special form of ESP, a special power that would benefit the Army.  I thought God was going to use me to teach soldiers to be self-aware, so I referred myself to the mental health clinic on post.  No one in the clinic was impressed with my special powers, but instead I was referred for psychological testing and received a diagnosis of schizophrenia.  I voluntarily allowed one of the officers to take me to the hospital.  I still vividly remember what occurred when I got to the hospital.

My sunglasses were still on as I entered the small room. My platoon Sergeant  was behind me, and I noticed that the man waiting for us wore a nametag identifying him as a “Doctor.” I was wearing sunglasses because without them, my disease would spread. That meant, through the channels of ESP, my reality would take hold, and an individual would be able to speak with another individual without them being present.

My reality was better than even communicating with someone on the internet.  I had visions of the person in my mind. The only bad thing was I could be influenced by the voices I heard in my head. I had an ex-girlfriend who I believed would love to convince a doctor in the psyche ward to throw me in a straight jacket and give me shock therapy—a big fear of mine. I thought if I kept my sunglasses on, the voices could not influence the recipients of this skill.  MY eyes were the gateway to this adventure into a community of voices, each one representing someone who I thought was real.

Suddenly as the naval doctor was asking me questions my platoon sergeant yelled.

“Take your sunglasses off!”

The very thing I couldn’t do.

            Because I was used to following orders, I slowly took off my sunglasses.  So it             begins…the doctor will now be able to hear everyone I had made   eye contact with for the last couple of months.  The doctor sighed.  I        was confident that the voices had made contact with him.

            I was given pajamas to wear, sent to a room in the psyche ward that I         would share with three other people.  This was a psyche ward.  Never in             a million years would I have thought I might end up in a place like this.  I    was scared, but resigned to whatever might happen.    

            Specifically, I was diagnosed with schizoaffective disorder which is a chronic mental health condition characterized primarily by symptoms of schizophrenia, such as hallucinations or delusions, and symptoms of a mood disorder, such as mania and depression.  I would go on to learn that my brain disease would leave an internal scar that would remain with me forever; that I would take medication for the rest of my life; and my future would be a battle to manage the symptoms of this disease.   I was twenty-three years old, young, inexperienced, and facing the greatest challenge of my life--something I was totally unequipped to handle.  Thankfully, I received an honorable discharge from the Army with a 100% disability rating. 

            When I returned home to Virginia, I was not the person who had left.  I refused to accept my diagnosis and without the medication that I was supposed to be taking, I began acting out in ways that were extremely detrimental to my health and well-being. 

            I didn’t understand the voices and delusions inside my head.  I was angry that my parents didn’t understand what was going on with me.  In my chaotic rants I tried to make them accept that I could fight this on my own without medication.  Although they did their best to support me by researching my diagnosis online and by attending a group for parents of mentally ill loved ones, I believed that they, too, were hearing the voices I was hearing and were part of the conspiracy to cause me harm.  Having made eye contact with me, my parents were listening to the wrong voices, and I wanted them to just listen to me.

            I had a savings account that was quickly depleting. I would not take my medication, and my head was full of voices not understanding who they were talking to.  My parents finally made the hard decision to call the police because I had become a danger to myself and even to them. It could have ended badly but even I was tired of the voices in my head.   

            On one particularly bad day, I had become abusive to my dad.  I didn't realize that my mom had called 911 for help until she handed me the phone.

            "Mr. Jepson, this is the Henrico County Police Department.  Come outside."          What was this, I thought.  When I went outside, I felt like a criminal as I saw the        police with their shields.

            "Put down the phone," one of them said to me over the telephone I was holding.  I             did as I was told and walked outside towards the driveway to meet them.  I      remember feeling rain begin to fall on me.

            "Get down on your knees," another officer screamed at me!

            "Put your hands in the air," the officer closest to me yelled as four other police     

            officers rushed towards me.

            With intensity in his voice, another officer told me to lie down on my stomach.      By now there was a river running down the driveway at my parents' home, and       the police were standing over me with their guns at the ready.  Looking up into          the eyes of the policemen, a person might think the battle was over, but it wasn't.          I was exhausted from hearing the voices, so I had some sense of relief that this            was my time to get help.                 

            In the next few hours, I would be handcuffed, receive a mental evaluation, and      stand before a judge and be declared incompetent.  I was involuntarily taken to a            hospital where I was put on a locked floor.  However, this was the only way I     would have gotten the help that I didn't know I needed.

 

            It has been several years since I was committed to that psychiatric hospital.  Today I am happy to say that I am in recovery.  My recovery has not been in weeks or months, but in years.  During those years I have gone through trial and error periods with my medications, and with the help of my doctors and with my own patience, I have reached a place where my symptoms are manageable.  Along with an antidepressant,  I now take a monthly injectable which eliminates the need for remembering whether or not I have taken my meds.  I still have symptoms, but if my symptoms are getting in the way of life, I know I can have a conversation with my doctor about that.

            Knowing what is going on around me is an important part of my continuing recovery.  I have learned to examine the evidence around me to determine whether what I think is happening is part of reality or non-reality.  If there is no evidence, then it is my brain disease talking.  The voices are still in my head. Sometimes they are in the form of commentary--sometimes insulting voices,  like conversation, as if the person is in the same room as I am in. One delusion is ongoing--a voice  in my head of an old man who likes when I mess up or just waits until I do so. Sometimes they are the same voices I heard in the desert or on the evening when the police took me away from my parent's home. If they were real I am sure they would have gotten tired of me by now. Sometimes if I hear voices,  I look through the peep hole of my front door or even open my door to look around. Sometimes I think it is my neighbors talking, and other times the voices are just in my head.  I find myself constantly fighting off impulses that just pop into my head. 

            Perhaps most importantly, I have accepted that I have a mental health diagnosis.  I have a brain disease that can affect my perception of what is going on around me.  I take a medication that helps with that--just as a person who has heart disease might take a medication to relieve his symptoms.  I have decided not to be silent about my diagnosis.  There is nothing that I have to be ashamed of.  Some people may not understand my diagnosis, but if they give me the opportunity, I tell them what it's like to live with a brain disease.

            After a broken bone, often the patient has to have physical therapy to strengthen the muscles around the break.  In physical therapy one has to push themselves to encourage healing.  While going through physical therapy, there is the scar from surgery as a reminder that it is necessary to push beyond your comfort zone.   With my diagnosis of schizophrenia, I tend to isolate myself.  I  prefer my own company to others.  I feel safe in my apartment and would much rather stay in than go out.  However, I understand that I have to push myself sometimes to get out of my comfort zone.   Recently I attended a rock concert with my brother.  It has been many years since I have been in a crowd like that, and I was concerned about how I might react once I was there.  However, I pushed past my fear, knowing that I was with someone that I trusted--someone who understood my situation and was willing to leave if I felt uncomfortable.  I have also pushed myself to enroll in kickboxing classes.  The benefits of the kickboxing go beyond the physical exercise I receive.  I push myself to interact with other members in the class and to participate enthusiastically. 

            Time can heal all wounds, but the scars on my psyche will always be there where I can feel but not see them.  My ongoing recovery is a sign that healing is taking place.  In my recovery I have chosen to not dwell on the losses, but to live my life the best I can.  Part of that purpose is to continue to shed light on mental illness through my writing of first person accounts and to fight the stigma that surrounds mental illness and prevents people from getting the help they need.  Through my writing and advocacy I have become the educator for those who need to understand what life is like for someone living with mental illness.

             My faith has strengthened since my diagnosis of schizophrenia.  When I was in the Army, I remember lying in my bed crying out for God to help me.  I realize now that He did help me by bringing me to this place of recovery.  My prayers are simple ones now, like "God, help me get to my destination safely."  I have a couple of friends who are ministers, and their talks have given me great encouragement.

            Dennis Leary said, “Happiness comes in short doses."  I think that means, grab hold of the simple things. That can be a diet soda, cup of coffee or tea, or observing nature when you have the chance.   Recovery, for me, is about embracing life again and living out loud.   What follows is a poem I wrote to describe my life now....

 

 

 

 

 

To Live Out Loud

And in the grips of insanity
what carries my hope
what keeps me laughing
when the voices seem to control my mood?
I've often said, “Once you've lost it, you can't lose it again.”
I laugh,
but no one else does.
Normal--so boring you might say.
When my imperfections shine
like the lines of poetry,
I am a writer;
unnoticed,
however, changed by the real world.
In adulthood I value my smile.
The struggle is beautiful,
once you can look back on it.                                                                                                                                          Now, I have settled,                                                                                                                                     but these words might say otherwise.
I am alone in the bliss.
As a young man                                                                                                                                           no one told me I would be so content at this age.
I laugh,
I sing,
I dance,
but there is still fear
that I am trying to ignore--
I ignore, that I might live out loud.

 

                                                                                               

 

 

 

 

 

Facing the Mountain

            I was on the second story ledge of my Army barracks, not sure about my intentions. Under me was another gravel bed. Fort Irwin in the Mojave Desert was paved with them. No, I did not jump; if I had, I would most likely have broken some bones.

            In the next days and weeks to come, I will lose rank because of my lack of motivation which was seen as insubordination. I would also be diagnosed with schizophrenia. Looking out the window of my room in the Army barracks, I could see a massive mountain standing alone. Alone in the desert of my life, I called it, “My Mountain.” I felt like that mountain was my only companion.

            I had trouble relating to the other soldiers, and they had trouble relating to me. One night in the field they really showed me what they thought of me by duct taping me into the fetal position. As a result, something broke inside me, and I was never the same.

            After the night I was taped, I was truly a different person. In the motor pool where we serviced our tanks, I raised my voice to my fellow soldiers and yelled, “No one else will be taped!” I also began thinking I could communicate with random people through my heart and brain without actually talking aloud. I went to the mental health clinic on post hoping I would be transferred out of the desert to a better duty station where my special powers would be valued.

            At the clinic, the doctors put me in front of a computer to take a psychiatric test. During the test I saw my fellow soldiers and random people flying all around me, talking to me, although I was in a room by myself. I thought it was all a part of my special powers. The results of the test indicated I had schizophrenia so I was taken to the psyche ward in San Diego where I would be officially diagnosed with schizoaffective disorder/bipolar type. I eventually went back to Fort Irwin, and the authorities put me in sick bay on the first floor until they could decide what to do with me. In this new room, I could not see my mountain.

            What followed was an honorable discharge, and a drive back to Richmond, Virginia in my pickup truck full of my belongings which had been placed in garbage bags; back to two loving parents who had no idea what their baby boy had become.

            My war was mental, and inside my mind, it was chaotic. I was not taking the medication I had been prescribed, and I became a danger to myself and my parents. My parents had to do the only thing they could do, call the police.

            I remember as I sat in handcuffs, thinking, this was the bottom point in my life. I had no idea what was going on in my brain, but I knew I needed to get help. I felt betrayed by my parents, but I realize now, they did what they thought was best for me.

            In the months that followed I was hospitalized and put on medication again. After the hospital, I went to a homeless respite, stayed in a furnished room with a TV and bed. Finally, my veterans’ affairs benefits came through. I was not wealthy by any means, but I could provide for my physical needs.

            Full recovery takes time. It takes time to find the right medication and it took time for me to accept my illness. To understand my mental illness, it was important to come to an understanding of what is real and what is not real. It was also important to know what triggered my schizophrenia symptoms such as hunger and tiredness. Today my parents are a major part of my support system, and they advocate for me as my caregivers.

A diagnosis of schizophrenia is not a death sentence. Today I share my story, and that has given me purpose. Sometimes I still visualize that mountain outside my Army barracks where I once felt alone and helpless, trying to control the impulses of my brain.  As I recall those days of struggle, I now view that mountain as a symbol of empowerment. I am conquering the struggles of a mental health diagnosis, and I am using my passion to help others who may just be beginning their mental health journey.

 

 

 

 

  Reducing those Unwanted Symptoms.

            We all have priorities in our lives. Priorities define our actions and provide direction for everyday activities. Priorities could include your family, friends, following advice from doctors, and being attentive to your own care and needs. Given my mental health diagnosis, taking medication as prescribed and consistent exercise are top priorities for me. In this article, I will focus on the importance of exercise. 

            There are different reasons why I exercise.  Exercise is good for my body, especially for my heart and lungs. As the circulation of blood increases I often experience a feeling of well being or happiness.  Another reason I exercise is to clear my head of  symptoms such as hearing voices, seeing unexplained visuals, and unexpected emotions.  After my time on the treadmill, symptoms decrease and a smile often appears and I am motivated to lift weights and continue exercising. 

            Exercise also helps reduce feelings of aggression linked to my diagnosis of schizophrenia. Aggression and feelings of hopelessness can appear because of  my mental health issues. The more mad I get, the harder I workout. This is a lot better for me then involvement in negative acts and in keeping all these unproductive thoughts inside.   

            Sometimes it is important to add variety to my workout routine.   I also do kickboxing because it’s another way to relieve stress and increase feelings of well being.  Often I consider the size of the class to attend. I prefer working out with fewer people as this reduces my anxiety. Tuesday’s at 4:45 there are only a handful of people in attendance.   

            I love kickboxing so much that recently I received a free t-shirt for participating in 200 sessions in my class. I am motivated by the instructor listing my accomplishments on the chalkboard and by putting on my boxing gloves and punching the bag. The class also includes other exercises like push ups and setups. Believe it or not this form of exercise can burn up to 900 calories and create an almost euphoric state of mind. Occasionally mild symptoms can arise but they soon disappear as I vigorously exercise and sweat drips from my forehead.  

            On the surface I don’t tell anyone about my schizophrenia. The other students in the class are acquaintances. I enjoy seeing the same faces especially when they have completed 100 to 200 classes. The end of a class is winning the war on a sedentary lifestyle and isolating myself in my apartment. The rage I feel about having a severe mental illness such as schizophrenia is diminished.  The instructor keeps us motivated by saying, “Remember why you came here.”

            After I workout, I like to write down what I have done on my calendar. I workout 4 to 5 times a week and try to finish strong at the end of each week. After completing a week of exercise, I am motivated to continue working out the next week. After four weeks,  my calendar reminds me of my work out accomplishments for the month.  Once working out turns into a routine, I often feel guilty for not exercising.  However, I must be careful not to over exercise.  

            Focusing on my workout stimulates my brain and the symptoms often disappear. Exercise fills up the spaces that schizophrenia creates . I can’t think of a reason to stop exercising, because exercise for me can be as useful as therapy.

 

 

 

 

Bless The People Who Stick Around

            There have been some people in my life who came in and out and left little impression on me.  Although we seemed to have much in common, for whatever reason, the friendship did not take hold.  I am grateful for those who came into my life and are still there. The ones who have taken the time to really get to know me.  Being diagnosed with a severe mental illness is not something that attracts friendships.  That is an adjustment that I have had to make in my life.

            The most important thing in my young adult life was my friends. During those years, while serving in the Army, I was diagnosed with a severe mental illness--schizoaffective disorder.  After receiving a medical discharge from the Army and returning home, I was excited about rekindling relationships with the friends I had before I joined.  I would meet them at a local bar, and I'm sure my friends could see the changes in my personality.  I was not taking my medication, and I was in the deep psychosis of full blown schizophrenia. In my chaotic mind when they turned away from me, I thought my friends were being influenced by the same voices that were inside my head.  I remember using words like 'psychotic and crazy' when talking to them about how I was feeling at that time. That kind of talk scared them away. I understand why they may have deserted me. They were not experienced at dealing with someone with a mental illness, and I was not in any condition to accept any help they might have offered.  I have come to understand that they were good people, but they could not stick around someone who would not even accept their help if offered.

            If I could speak to those friends today, I would tell them that I was not myself during that time.  I was under the influence of uncontrolled delusions and hallucinations.  I'm sorry that I may have made them feel uncomfortable.  It has been a process for me to learn to accept my illness and accept that I must be on medication for the rest of my life, not unlike some others who might be diagnosed with diabetes or some other chronic disease. I am not mad at my friends.  Life keeps all of us busy enough. I understand that having a friend with a mental illness can be very stressful. 

            The ones who never left my side during that confusing and lost time in my life were my parents. The only people in my life, that were doing research about my illness were my parents. They made it their goal to understand my diagnosis even when I did not.  They joined a support group of other parents whose adult children were not cooperating with their treatment plan.  They researched schizophrenia....its symptoms, treatments, and outcomes.  Although they could not fully understand what was going on in my mind, they would not give up on me.  During those days their message to me was always the same:  "Jason, you have to take your medication."

            During the first stages of recovery, my parents were the only ones to visit me when I was at a treatment facility.  I stopped being embarrassed about them and realized they were my greatest support system.  While I received no phone calls or visits from my old friends, my parents were there for every visiting opportunity and called me daily. I realize I am blessed to have my parents in my life.

            I tell my parents often how much I love them and thank them for all their support during the years since my initial diagnosis.  Without their love, I probably would not be here today to tell this story.  Thank you, Mom and Dad, for not letting me fall, for treating me with respect, for being my partners as we beat this illness together.

            Because I am an honorably discharged veteran I receive all my care and treatment at the local veterans hospital.  I still have the same psychologist who has worked with me from the very beginning.  She has shown extraordinary patience with me, listens to me when I might need a medication change.  Even though she is an extremely busy person, she always takes time for me.  Besides being my psychologist, over the years we have developed a friendship, and I know she always has my best interests at heart.  Even my psychiatrist who prescribes my medication listens to me with no regards to a schedule or time slot.  All the other doctors have treated me in a complete non-judgmental manner at the veterans hospital are dedicated to good care and treating me as an individual who has a brain disease.  All of my professional healthcare providers are compassionate and dedicated to helping me. I am grateful to them for listening; for not seeing schizophrenia but seeing a patient who needs help.

            My recovery from schizophrenia has given me opportunities to advocate for those who also have a mental health diagnosis.  In the process I have met some other amazing advocates.  We have become friends and family who enjoy seeing each other grow in our own personal recoveries.  I enjoy seeing how they are advocating for others on social media.  They are all intelligent, honest, and supportive with each other.  They have added value to my life; I cherish them and can't wait to see what they do next.

            The success of my recovery involves many factors, but primarily my success would not be possible without the ones who stood by me.  It has been a combination of people who came alongside me and would not give up.  Recovery cannot be done in isolation.  An essential part of treatment is a support team who will always be there to help.  I am forever grateful for the ones who stuck around.

 

Side Effects Versus Good Mental Health

            I have been diagnosed with schizoaffective disorder that is controlled by taking anti-psychotic medication. Currently I take two anti-psychotics, and with that help, I often have symptom-free days. On a symptom-free day I do not hear voices; I do not get paranoid about my neighbors; and I do not experience delusions. I have been told by my doctors that, although I benefit from taking two anti-psychotics, there is a chance for double the side effects. This essay will discuss how I have chosen to prioritize good mental health over the possibility of side effects.

            My anti-psychotics can have several side effects. Three of the most common are weight gain, constipation, and lightheadedness.  I know that weight gain can contribute to diabetes. Constipation can feel uncomfortable and being lightheaded can stop me in my tracks.  For me, these side effects can be powerful, and I ask myself if it is worth the discomfort I sometimes experience, to be symptom-free from my schizophrenia.  Is it worth the discomfort of anti-psychotics making my mind less schizophrenic, or would I rather be closer to the recommended weight of someone my height?  Would I trade the uncertainty of knowing where the bathroom is located to having a delusion?   Finally, is the inconvenience of having to sit down because I feel slightly lightheaded enough to make me want to give up my antipsychotics? These are questions I ask myself when I wonder about my mental health versus my physical health. 

            I have found some ways to combat the most common side effects of the antipsychotics that I take on a regular basis. I try to combat the side effect of weight gain by maintaining a proper diet and with regular exercise. I exercise about six times a week, and I do my best to not eat chips and sweets. On somedays I wish I could get rid of my belly and have six pack abs, but even when I was in the Army, I did not have six pack abs. So why do I expect that would happen now?  I see muscularly defined people and wish I could be the stereotypical strong muscular man. However, I have two things working against me, weight gain from being on two antipsychotics.  But….it never hurts to dream about being like the Hulk!

            Constipation can be a difficult and uncomfortable subject to discuss.  Knowing and accepting that this can be a side effect is the best way to confront this subject.  I try to combat my constipation by drinking fluids, especially water. Coffee helps too. I do my best to go to the bathroom as often as possible before I begin a workout.  Because I have a strong faith, I sometimes pray to my higher power to help me not have an accident. It has worked so far, but still I can be paranoid about whether there is a bathroom close by. Through honest discussions with my doctor, I have also been prescribed medication that helps with this problem.

            Sometimes I can feel lightheaded as if my brain is floating in air. It is a sensation that I cannot ignore. I immediately grab hold of something or sit down. This happens when I get up too fast or when I am working out.  This sensation has been thoroughly investigated by my doctors through multiple tests with no positive results, so we are left to believe this is a side effect of my antipsychotics.  This feeling goes away when I pause whatever I am doing for a few moments and maybe take a few sips of water.

            Despite the side effects that I experience from taking my anti-psychotics, I have concluded that I can manage these side effects, and by doing so, I can have many symptom-free days. The trade-off is worth it. Without anti-psychotics, I would be dead or in jail. Without antipsychotics, I would not be as close to my parents, my support system, as I am. These are good enough reasons to have a belly, to feel the need to have another cup of coffee, or to just sit down and breathe. With anti-psychotics, I can beat this tortured mind and feel free mentally. 

I have come to think of my antipsychotics as friends.  As in friendships, sometimes we do not agree with each other about everything.  Sometimes we may have arguments, but a friend is there to help, and the benefits of friendship outweigh not having them in my life. My anti-psychotics can have negative effects, but there are ways to compromise and keep them a valuable part of my life.    

 

Understanding My Delusion

 

            A psychiatrist once told me in her opinion I understand my illness better than most of her patients. I took that as a compliment because I have worked hard to understand my diagnosis of schizoaffective disorder in order to recognize my symptoms. For example, it is important to know that the belief that someone is in love with me isn’t really going on, but probably a delusion.

            I have a chart about schizophrenia’s positive symptoms on my refrigerator. I usually look at it after I have a delusion such as feeling stalked, hunted, framed, or tricked.  The voices in my head often make me forget what I want to say or make me forget where I put things that I need at the time.  I've learned this is another one of the common delusions of schizoaffective disorder called persecutory delusions.

            In my schizophrenic world I sometimes think I am an important public figure or in a fantasy world. According to my chart, this is a grandiose delusion. I've talked to several people with schizophrenia who have this same delusion. By using my chart after or while I am experiencing a delusion, can give me an explanation of why I am feeling this or hearing that.

            My participation in group therapy has also helped me to identify my delusions. Listening to others describe their delusions and verbalizing my own delusions gives me insight into looking at them in a logical way.  While the terminology might not be important, we can learn from each other by describing our delusions with a goal of understanding the unreality of a delusion. Coming to the conclusion, that delusions are not actually happening, but are symptoms of  schizophrenia is a huge step in accepting the diagnosis of schizophrenia. Examining a symptom, such as hearing a voice outside the door, by opening the front door to see if there is a voice out there talking has helped me tremendously. I've researched Cognitive Behavior Therapy, and it has helped me learn to examine a symptom and determine if it is a part of reality or non-reality. 

            I've learned that my confused thoughts and inability to concentrate are also symptoms of my schizophrenia.  I have difficulty concentrating, and reading a book is next to impossible because my short term memory has been affected by my schizophrenia. My mom is my editor for the articles I write since I have difficulty organizing my thoughts. She helps me to clarify my thoughts and dig deeper to understand how a delusion makes me feel at the time I am experiencing it. I have forgotten some of the basic rules of grammar and syntax, so she helps me with the mechanics of writing my first person accounts. Accepting that I need help with this part of my life has been an important step for my writing career.  For those of us who have a severe mental illness diagnosis, there is no shame in asking for help or accommodations we might need.

            Medication helps me manage my symptoms. It would be great if I could realize something is a delusion when it is happening.  Just because I realize it is a delusion or a voice going on inside my head doesn’t mean the delusion will instantly go away. Listening to music or watching TV can help me block out an unwanted delusion. Medication makes it possible for me to recognize a symptom before I act on it.

            My perceptions can be distorted because of my schizophrenia. Often I think that circumstances require action from me when they do not. For example, If I don’t get mail for three days straight I might be tempted to contact my mailman to see why I am not getting mail.    Fortunately, I have found a good support system that I can rely on if I am having trouble understanding a situation. 

            Moving forward with my life and not letting these annoyances or symptoms control me has made my life more productive. Researching and putting into practice what I learn about my diagnosis allows me to step out of myself and look inward to better explain myself to my doctor and others. When I can explain to a family member, a friend, or even my doctor what is going on inside my head, it is a relief. The bad days are over. The victory is mine.  I have a deep desire to understand as much as possible for a layman to understand about a diagnosis of schizophrenia.  Knowledge gives me power over my symptoms.  This knowledge allows me to be a vital contributor on my support team.  

           

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Changing My Perspective About My Mental Illness

            When I was younger, I do not remember any of my friends being diagnosed with mental illness.  One of my friends had attention deficit disorder for which he was prescribed medication, but I knew no one who had a serious mental illness.  No one in my family had a mental illness, so my perspective about mental illness was limited, at best.  I now know that mental illness is all around us whether we acknowledge it or not.  Some statistics say that one in four people have mental illness or know someone who has. My perspective changed drastically when a few years ago, I was diagnosed with serious mental illness.   

             I had come back from the army and the transition was not going well.  One of my earliest memories of psychosis is when I thought I could use my “special powers” for good. I went into the city to help the police. I thought my random intuition could possibly help me make money. Regular citizens could call the police with tips about a crime. It was possible to get one thousand dollars for a tip to the police if they used it. Since I had special powers, and savings account was diminishing, I thought this would be great way to make money.

            I called the crime line several times. I had called them so many times that the local police wondered what was going on and why a random guy had so many tips. When the police called our home, my parents told them I had a mental health diagnosis and was refusing treatment.  Meanwhile, I was wondering why all my tips were not being taken seriously. I thought for sure I could make money by helping the police to solve crimes.

Allow me to go back to the beginning.  Shortly after joining the Army, I began to experience some bizarre behaviors, and I was acting out in many ways. It was only a matter of time until my fellow soldiers and sergeants decided to punish me hoping I would conform to the military lifestyle.  Their harassment was an attempt to break me, and they succeeded because for the first time in my life, I felt broken. While I had once loved the idea of serving in the military and possibly making it a career, I now saw the military in a negative light.

            I needed help. I need something to pull me out of this dungeon that these strange symptoms were bringing into my life. I was laying on my bed, asking for God to pick me up and bring me back home to my parents where I would feel safe again. While God did not take me out of my situation at that point, He gave me the insight to go to mental health clinic on post.

            Doctors at mental health services decided I needed further testing and sent me to a psychiatric hospital. I call my parents from the hospital and my mom answered, stunned and a whole continent away. I was given a diagnosis of schizoaffective disorder, and later honorably discharged from the Army.

            I drove home as the rage and anger I felt derailed my perception of the diagnosis I had received at the hospital. Now my main motivation was to sue the Army for causing my life to be ruined and for all the wrong that had been done to me. I was obsessed with getting even. I was quite sure I was going to be a millionaire after I won the lawsuit. After suing, I was sure that I would not have to worry about money for the rest of my life.

            I got home and again the people in my life, my parents, did not know what to do with me because I was acting out again. My schizophrenia was consuming me. My parents were scared not only for what I might do to myself but also for their own personal safety. They called the police who placed me in handcuffs, and later took me in for a formal mental health evaluation. I was furious with my parents, but, at the same time, I was tired of fighting the chaos in my mind because I would not accept my mental illness.  I am so thankful that even with all this rage and all the anger I was not violent with the police. They were professional and knew how to deal with someone with a mental illness.  I gave up fighting my illness. However, I was infuriated with my parents, because the hospital stay would take me away from the lawsuit I was working on.

            In the hospital, my dad would visit. I was so mad at him I sat in silence. My parents’ selfless love was the only thing I had. Even though I was treating them like crap they never gave up on me. After my hospital stay, I was sent to a respite house where the medication finally took hold, and I realize the voices, delusions and excessive racing thoughts were classic signs of schizophrenia.  I was alone in the homeless respite, but I finally began to understand my diagnosis. My anger and rage were lifted when my medication began to fight the unwanted symptoms of schizophrenia. The lawsuit was dropped. I realized that my focus had to be on getting better.  Eventually I was able to forgive my fellow soldiers for their part in the harassment I had experienced while in the Army, and I now look back and admire those who make the decision to serve their country. Had I not joined the Army, I would not have the benefits I have which have provided excellent care for my physical, as well as my mental health. I know that that prayer I prayed while lying in my bunk in the desert was answered.

            I value my journey of recovery which includes my experiences along the way. The events that have led me to this point have served to build me up not break me down. Yes, there was a point of brokenness, but it led to a change in my perspective that made me feel brand new. Without schizophrenia, I may have been a failed writer, or someone without a unique story.  With my mental health diagnosis, I have a new perspective about mental illness, and I have become an advocate for those who have similar diagnoses.  I know that mental illness touches every family, and I am determined to allow my new perspective to help me change how society views mental illness.

 

 

What I want my Neighbors to Know about My Mental Illness

 

            I live in an apartment complex in a busy part of my town.  From my second floor balcony, I can see my neighbors coming and going from their jobs, appointments, and other activities.  I don't really know any of my neighbors on a personal level.  I live a rather isolated life except for occasional visits from my family.  So my interactions with my neighbors consist of a polite "Hello, how are you?" or "Have a nice day," exchanges.  I sometimes wonder how they would react towards me if they knew I have a diagnosed severe mental illness.

            Most people know that a mental illness involves one's thinking or behavior.  However, people may not know that all mental illnesses can be treated with a combination of medication and/or therapy.  I take antipsychotic medications and also an antidepressant.  Together these medications help me control my schizophrenic symptoms.  To look at me, one would think I was physically fit, well groomed, and reasonably healthy.  Although my disease is not outwardly detectable, it does greatly affects my life, just as heart disease, respiratory disease, or some other illness might affect someone else.

            If my neighbors found out that I have schizophrenia, I would want them to know that I am not a danger to them. I would not want them to believe the stigma that comes with schizophrenia. I do not own a gun, and I am not a serial killer. In fact, it is more likely that I would be the victim of a crime rather than the criminal. If my neighbors found out about my diagnosis of schizophrenia I would do my best to start a dialogue, and let them know that the medications I take control my schizophrenic impulses.

            I would want them to know that I do have a productive life as a writer and mental health advocate. Words can be powerful, or at least they can be, if used in the right way. I use my words as an advocate to educate people about what it is like to live every day with a brain disease. There is no question about my mental illness that I am afraid to answer, and if I cannot answer I would do my best to find the answer. I volunteer with mental health advocacy groups because connecting with people and sharing my story outweighs any financial gain I might receive from my writing. 

            I have always enjoyed physical exercise.  From my balcony I can see some of my neighbors playing sports. I love to play basketball, and there is a new basketball court near my apartment. I would want my neighbors to know that I would enjoy being invited to play pick-up basketball or volleyball with them.  I also enjoy working out, and there is a great fitness center in my apartment complex.  It would be great to have a workout buddy since being active helps me manage my symptoms.

            Although they might not see lots of people coming and going from my apartment, I would want them to know that sometimes I like to have company--just someone to hang out with or watch a ballgame with.  I have a large collection of vinyl records and would love to show off my jazz collection to them. I also like to cook and would enjoy cooking for other people, not just myself. Maybe a neighbor and I could cook together. The combination of a homemade dinner and good jazz sounds like a wonderful evening to me. 

            I would also like for my neighbors to know that I am an American patriot.  I am a veteran having served my country in the United States Army.  I love the fact that America is a country of diversity.  Many of my neighbors come from around the world to work at a large banking company close by.  Much of what makes us a great country is that we appreciate the unique contributions that come from all our citizens.

            Those of us who have a mental health diagnosis want to be accepted for who we are and not because we have a particular diagnosis.  We are productive members of society and make major contributions to our society every day.  Since one in four people are affected by mental illness, it is safe to say that every profession has members who struggle everyday to fight the stigma that surrounds mental illness.  I've never met anyone who I could not relate to in some way.  In talking. we can always find that we have things in common.  I would jump at the opportunity to explore some of those commonalities with some of my neighbors.

 

 

 

 

Selfcare is my Job

            I am blessed that I can live on my own, in my own apartment. I am glad that my parents are just a phone call away if I need to talk about my symptoms or what is going on in my head. I have schizophrenia which is a mental illness, and I must find ways to get through the days. Since I live on my own, I must remember to take my meds. I also must remember to eat and fix my own meals. This kind of selfcare is how I have learned to live my life almost as if it is my job.

            I must have a simple routine. There is nothing stopping me from sleeping through the day. There is nothing stopping me from eating a lot of junk food. There is nothing stopping me from disobeying rules and regulations I have set up for myself, but I need to make wise choices for my own wellbeing.

             I do create schedules and lists to help me remember to brush my teeth or to know what to buy when I go to the grocery store. After I work out, I usually write it on my calendar which is hanging on the door of my laundry closet. I do this so I can see my progress throughout the days, weeks, and months. 

            Once a month, I go to the Veteran’s hospital for my monthly medication checkup.  I worry about parking a lot. When I find a parking spot which is usually a little bit of a walk, I go to the blood lab where I get blood tests.   I see my psychiatrist, who usually approves my blood work then gives me a prescription for my pills. After the pharmacy I get my once a month injectable which is very convenient. When I get back to my apartment, I make coffee, and relax because it has been a long day for me. It is still early, and I need to pass the time, so I work out.

            One of the things I enjoy doing is cooking for myself. I try to eat healthy, even though I have no one telling me I must eat healthy. Occasionally, I fix a meat, sometimes eggs, and always a vegetable. There is no one telling me that I cannot order a pizza or telling me that I cannot eat ice cream and cookies all day.

            Routine is important for my self- worth. I even set a clock, so I do not sleep away the day. One thing I do in my routine besides workout is talk to both my mom and dad. I call them every day. If I do not, they may think something is wrong. I feel good about checking in with my parents because they are not just my parents. They are also my friends. Sometimes I visit them for a long weekend.

            My parents and I like to eat dinner together. I enjoy paying their bill because they have done so much for me over the years. My dad is my fiduciary which means he oversees my finances. Because I save my money, I was able to buy a car and some new furniture. Despite these expenditures I am still financially stable with the help of my dad.

            There is nothing that is making me eat unhealthily, sleep the day away, or have a productive routine. Family is important, but for the most part I am alone. Because of my routine my days do not seem to be boring. I am thankful for my life and love my independence. My family gives me space and do not hover over me which would create stress. It is just me and I must deal with my own mental health issues. If I were not able to take care of myself, I would not be so free to live my life. The selfcare I practice everyday may appear to some as being selfish, but I consider it my way of taking care of my mental health.  It is my occupation and duty, and I am worth the effort.

 

The Lifestyle Change

 

            When I was in my twenties and early thirties, I enjoyed drinking alcohol with my friends. It wiped away my inhibitions, and I felt invincible. I understand why some might enjoy alcoholic beverages, but when you consume as  I did--five or six times a week and several beers at a time, drinking alcohol becomes unhealthy, not to mention expensive. When I was drinking I was not trying to escape life or running from anything, I just liked the way it made me feel. A cigarette and a beer was all I needed to relax, and I did that with a very regular frequency!

            I remember one particular Friday night I decided to count how many beers I drank that day and evening.  I bought a twelve pack of beer from the grocery store which I drank throughout the day.  After that I went to a nearby bar and had seven more beers. Yes, that's nineteen beers in a twenty-four hour period.  Clearly I had a serious problem.  I could not have just one beer and stop. 

            In addition to my alcohol consumption, I was smoking three packs of cigarettes a day.  One night I went to the bathroom and coughed something up. It was some kind of bloody mass.  I admit that was a very scary moment for me when I realized that my life style was taking a toll on my health.  

            The following day I decided to quit smoking cigarettes. The day happened to be Father’s Day, and my dad later told me that giving up cigarettes was the best gift I could have given him. Addiction to cigarettes has been compared to heroin use.  Giving up cigarettes was one of the hardest things I ever had to do.  This also made me take a hard look at my alcoholism.  Normally if I had a cigarette in one hand, I had a beer in the other.

             I am not going to tell anybody to stop drinking or to give up smoking. If I could have done either in moderation, I might not have quit. However, that was not my reality.  More importantly, I have a diagnosis of schizoaffective disorder.  With the way I was drinking, I was having symptoms of my schizophrenia.  The alcohol was making my medication ineffective.

            After quitting drinking and smoking, I decided I was going to begin an exercise regimen to  get healthy. I began to diligently use the fitness center at my apartment to regain my physical health.  I varied my exercise to include walking around my neighborhood periodically.  I enrolled in a kickboxing class to further add variety to my new routine.  Kicking and punching the bag turned out to be good therapy for me, in addition to the thousand calories I burned at each session.

            Gradually I began to experiment with changes in my diet.  After a workout I learned to make smoothies.  I had to learn the hard way that what I put into the smoothie and the portion size was also very important.  I had to learn that even fruit which I thought was very good for me, could have added sugar which I did not need.  By making adjustments to what I put in the smoothies, I gradually began to lose the weight I had mysteriously put on.  I educated myself about what foods were contributing positively or negatively to my health goals. 

            I used to be the kind of guy who liked to snack. I loved nachos and salsa, as well as potato chips. I had to throw that out of my diet. I also threw out bread and crackers which was a difficult decision since I was addicted to carbohydrates.  I tried to eat more protein such as eggs, meat, and cheese.

            Many people who take medications similar to the ones I take for my schizoaffective disorder have problems with weight gain.  However, for me these changes in my lifestyle have allowed me to control the weight gain that often comes from taking antipsychotics.  These changes to my lifestyle allow my medication to be more effective, and I often have symptom-free days.  I am motivated to keep going.  The changes I have made will allow me to live longer and hopefully have a more enriched life.

 

 

A Lesson Learned

            Because of recent Corona Virus restrictions and my diagnosis of schizophrenia, I do not have a problem with self-isolation.  There are many days when I have no social interaction at all except for calling my parents.  Because of my schizophrenia I tend to shy away from large social gatherings.  Receiving news that a close relative whom I enjoyed from my childhood had died from Covid, caused me to want to stay isolated even more. However, recently I learned a lesson about how much freedom can be found by venturing outside the boundaries I have created.

            Recently I was able to buy a brand-new car. Since my parents live about two hours away, having my own car allows me to be independent which is important to me.  My daily schedule is flexible, meaning there are some days where I do not drive at all, however, I push myself to drive to do errands.  A short time ago, I got in my new car to run a few errands. The engine would not start, and it appeared that the car’s battery was dead. At first, I did not know what to do. I wondered if I had left the interior lights on or something else that had drained the battery.

            I decided to call my dad for advice. He reminded me that with my new car, I had roadside assistance.  I called a repair service, and someone came to check the battery.  The mechanic told me to leave the engine running for a period of time. I decided to take the car to the dealership to find out why the battery died since it was a new car.

            At the car dealership I was told that sometimes car batteries are fickle.  They should be driven often to keep them charged.  The solution was simple:  I had not been driving my car enough to keep the battery charged. 

            The answer to my dead car battery gave me the understanding that I must leave my apartment, my safe refuge. I could not live a sedentary lifestyle, I had to go out.  So, despite the corona virus, and my isolating schizophrenia, I had to go outside and drive my car.  Of course, I was afraid.  What if I got into a car accident?  What if I got stopped by the police?  Those fears were real, however, my car demanded attention.

            After dinner that night, I decided to go for a drive.  I did not need to run errands, and I had no place in mind, but I knew I needed to get outside my apartment…both for my car battery and for myself.

            I drove to a neighborhood where I used to live with my parents when I was a young adult. This was the house I was always leaving. I left that house to go to college. I left that house to join the Army. I also left that house in my twenties because I did not understand why anybody would want to live there.  At that time, I had no deep sentimental feeling towards that house except that I viewed it as a place of middle-class conformity.  I felt my friends and I were different, and I wanted to be anywhere else in the world except this suburban carbon copy of America. This was also the house where I remembered being taken away in handcuffs because I was a danger to myself and my parents.

            Now, as I circled the driveway, my thoughts were different.  I saw this as a safe neighborhood for children to play and ride bikes.  A place for cookouts and family gatherings. The adults here were trying to make their work life and their family life a success. My dad had provided me with a good life and food on the table. My mom gave me love. I did not understand then, but I understood now.  Perhaps my old self would not like my new self.  

            I left my old neighborhood, and for whatever reason, I did not go in the direction of my apartment, but I drove towards the city. It had been a long time since I felt this much freedom. I did not go anywhere in particular. I went to a drive-in restaurant and ordered a large cookies and cream milk shake. It was totally random. I usually watch what I eat, but on this day, I felt I deserved a big milk shake.

            Because of the lesson I learned from my car battery, I am now planning more little trips around town.  I am looking for more reasons to go out for drives.  I am thinking on one of my next trips, I might even venture into the city to see some of the historical sights.  I still have a tendency towards isolating myself because I have a brain disease, but my car battery has given me reason to step out of my usual life and look for small adventures.

           

Handling A Stressful Day

            For me, the most important day of the month is when I go to the veteran’s hospital where I get my medication. I wake up before 8am to make sure I get a parking spot. I immediately go to the blood lab where I get blood work done to ensure that I am not experiencing any adverse reactions to my medication.  After my blood has been taken, I go to my appointment with my doctor.  This would be a normal schedule for me.  When things do not go as planned, an interruption in the routine can create stress. Stress can be a trigger for my schizophrenia.  I take deep breathes and deal with other triggers like needing a cup of coffee or something to eat from being hungry.  After a large cup of coffee I go to the mental health waiting room where I wait to see my doctor. 

            The appointment can vary depending on whether or not I am experiencing symptoms. When I get in to see my doctor, she always begins by asking me if I might be a danger to myself or someone else. Also she asks if I am experiencing symptoms. After seeing my doctor, I get my monthly injectible and pick up any other prescriptions.

            This is as smooth as a trip to the veteran’s hospital can go. Typically, I would be leaving around 10:00am in the morning--on my way home to wait for another month to pass, and then I repeat the process all over again.

            However, many things can happen to disrupt what should be an ordinary day to see my doctor and pick up my medication.  It's quite possible there could be a traffic problem, and either I or my doctor  are late for some reason.  Impatience doesn’t help anyone, and complaining to the receptionist that my time matters doesn’t quicken the process.  I tell myself that doctors have lives outside their job at the veteran’s hospital, so of course, they are late sometimes.  I have found that the more patience and understanding I can show, the better my chances for getting the help I need. I think about my life, and getting my medication is the most important thing I have to do.  For the most part, I have no plans for the rest of the day, so being irritable will not speed things up.  Recently my doctor was late; she usually comes in around 9:00am.  when I first saw my doctor, I asked her if she was okay. She assured me that she was, and I could see her relax. Sometimes my doctor forgets to tell the blood lab that I am coming.  Upon learning this,  I have to go back to the mental health waiting room and wait for my doctor, so she can give the order. The doctor places the order for the blood work, and I go back to the blood lab to get my blood work.   Even though interruptions occur, I can’t just walk away or give up. The alternative to giving up and leaving would create more stress because I would not get my medication. 

            Once the veteran’s hospital ran out of my medications, and I knew that I only had a few days of meds left at home.  This was extremely stressful for me since I know I cannot go without my medication.  Realizing that freaking out wouldn’t be constructive and would probably put me in the psyche ward on Christmas, I sat down and got something to drink.   The pharmacist was willing to send the rest of my medication in the mail to my home, but I realized I would not be home, but with my parents. However, the medicine could be delivered in the mail in one day to my parent's home.  I learned that even during a break in the routine, other answers can be found. 

            Problems can be solved. Sometimes I need to sit in a quiet place with no distractions to think through an issue. I've learned that it is okay to ask for advice from your doctor or pharmacist. They are there  to help me.

            I try not to take interruptions personally. Sometimes with my paranoia I think people are conspiring against me, but if I take a deep breath and remind myself that my doctor and pharmacist are there to help me and not to hurt me, I feel less stress.

            Even though I am in recovery I still need to ask for help occasionally. Events in our life like medication changes or dosage changes can stress me out, and my feelings about these changes can fluctuate.  However, I know I can trust the professionals on my treatment team to know when it is time to regulate your meds.

            Change is certain in life; even small changes, and my emotions can go up and down because I have a mental health diagnosis.  Not giving up when my schedule gets interrupted and not being afraid to ask for help are teaching me that my problems can be solved and work through.

Becoming Sober

 

            I probably started drinking when my friends and I were getting our driver’s licenses. At the time I could not handle the taste of beer that came later. Since I did not like beer my friends and I would drive in his purple MG convertible to the poorer part of town where we could shoulder tapa bum. We would give him a few extra dollars for the cheep sweat wine. This weekend we had the wine, and we were driving back to where the rest of our friends were. As we were heading back a police officer stopped us. We tried putting the cheap wine under the seat, but he already knew about the cheap wine. I thought we were busted and will end up in jail for that weekend. The police officer had my friend pour out the cheap wine out on the side of the road. My fun for that Friday night was being poured out as well. That just affected that Friday night it did not detour my drinking for the rest of my high school career.

            Later, the same friend and I moved to Richmond, Virginia. My friend’s brother already lived there, and he was our main beer hook up. His brother told me about this bar that if you go there before 9pm when the bouncer check ids you will be able to drink. On Friday night they had jazz night with a real band with real musicians, and I loved jazz. My friend’s brother and his friends I believe had their fake ids. When I showed up, I had no fake id  and I was by myself. I sat at a table in the back by myself.

            The prep work for this moment involved not shaving for days and wearing a collared shirt tucked in. I also had my satchel. A big part of it was talking myself up so I did not seem paranoid. Also, I tried to act mature whatever that meant for a second-year college freshman.    

            The waitress was cute, and after I asked for a beer, she did not card me. My heart fluttered for that waitress and fluttered wondering just how long I would be able to keep this so-called maturity up. Either way for that Friday night I was drinking beer and I was legal, and I had no real concerns as I drank more beer that night.

            Drinking underage was exciting, but youth does not last forever. Drinking becomes routine, and there is no excitement when it comes to routine. After a while I just became a bar fly among other drunks with most of their attention on the game on the television. Drinking buddies are just that buddies you only see when you are dinking. They were nice but most people are after a couple of beers. I was excited about this bar because I could walk to it. It was just in my neighborhood.

            I was not your typical drunk. I never blacked out, and I did not spend all my money on alcohol. However, I did drink 5 to 6 times a week and it was just a matter of time until my unhealthy habits caught up with me.

            Besides drinking, I smoked three packs of cigarettes a day. My biggest fear was not heart disease or lung cancer but what would I do if I ran out of cigarettes. I was just a drunk in a dim lit bar, drinking because I thought that was what people did. What else should I spend my V-A disability on?

            I had demons in my mind sure. I had been in the army, and I received an Honorable Discharge, but my military service did not involve medals or an accommodation. It did not involve fighting bravely in a war. My military service involved a mental breakdown after I experienced hazing. I had no heroic stories to share with anyone just a hidden schizophrenia mind. I drank to forget and to ignore my schizophrenic symptoms.

            Alcohol took away the effects of my antipsychotics. At the dive bar, I often thought I was going to get jumped. I often came in by myself and left by myself. I thought there were people in the bar that I thought were trying to listen in on the conversations I was having with my drinking buddies. I was often looking over my shoulder to scope the place out.

            Also, financially it was awfully expensive to drink as much as I was drinking. Spending my money on alcohol took a big chunk of my disability, but I still had enough money to pay rent every month.

            One weekend I was with my parents who were in the process of moving. We were staying at a hotel in town, and we had just come back from being at the bar. I could have stayed longer but I was with my parents. I was using the bathroom with I coughed up this bloody mass up. This is what did it for me. I believed my lifestyle was catching up with me. It was that and the fact that for awhile I kept on thinking drinking was just not as fun anymore. It was routine and it was expected. Not to mention, when I drank, I drank a lot.

            The transition to a drunken lifestyle to a heathy lifestyle took changes not all at once but one by one. It started with changing my habits and changing my routine from drinking to exercising and eating right like eating greens instead of donuts. Now my routine is exercise and often I feel a high from the endorphins. I fear my old addictions. I do not want to be that far down again. My medication works now, and I have some symptom free days. This was worth the change and I feel blessed.    

 

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Fighting the Loneliness

 

 

            I haven't always had to fight loneliness and isolation.  When I was younger I loved going out to listen to live music.  Dancing was a fun way for me to interact with others.  I enjoyed being social and was always looking for a place to meet friends at a bar or show.  All of that has changed since my diagnosis of schizoaffective disorder.  Fighting loneliness has become part of my new normal.  Isolating myself because of my mental illness can easily lead to loneliness and depression in my life now.

            One Saturday evening a few years ago I decided to count how many beers I had consumed in a 24 hour period.  I counted 19.  I realized at that moment I couldn’t just have one beer, but I had to have a lot of beer, or nothing at all.

            Before my diagnosis of schizoaffective disorder, my life style involved going out to bars to drink with my friends.  At the time that was my social outlet.  However, after my diagnosis I quit drinking alcohol.  I was used to spending a lot of money on alcohol.  That was another reason I stopped drinking... it was too expensive.

            Another reason I stopped abusing alcohol was for health reasons. An unhealthy lifestyle lead to a size 42 inch waistline, but I also knew that the excessive drinking was doing damage to other parts of my body, as well.

            The first couple of weeks of not drinking on a Friday night were especially tough for me.  I missed even the minor chitchat that occurred in those settings because alcohol provided liquid confidence for me.  While I'm not the best at opening up a conversation, I knew that being around others was important for me.  After awhile the desire for alcohol went away, but I still did not have the social interaction that I had gotten from hanging out with my friends at bars. 

            Now that I am okay with not drinking, I use my money for other things like my kick boxing classes.  I've always enjoyed physical activity, and working out and exercising have become my new positive addiction.

            I used to be a very heavy smoker. At one time I smoked three packs a day. Just about every afternoon, I woke up and realized I was almost out of cigarettes, so I went to the grocery store across the street to buy three packs of the cheaper off brand cigarettes. This happened every day until my health began to be affected.  I knew I had to quit.

            At the veterans hospital where I receive treatment there are always vets smoking.  Even today when I see, and even smell the cigarettes of the veterans smoking in groups, it brings back good memories. Since I do not want to go back to my three pack a day habit I just ignore it.  There was a time when my smoking served as another way for me to be social--social, but very unhealthy. I ended up quitting smoking on Father’s Day. My dad said it was the best gift he had ever received. While I don't regret giving up cigarettes, I realized that I had also given up another social outlet.

            One of the things I realized after losing the social connection that alcohol and cigarettes once gave to me, was that I had to find other ways to connect with people wherever I was.        

 I've learned to use my monthly trips to my veterans hospital where I have regular appointments as a social outlet of sorts.  At the veterans hospital I feel unity while talking to vets in the pharmacy and mental health waiting rooms, and sometimes in the eating area. We talk about the different duty stations where they served.  Sometimes they complain about appointments or wait times, and I just listen. Often that is all a vet wants--someone to listen to them.

            On occasion some people inquire about my semi-colon tattoo which is very prominent on my left hand. They may say, “I’ve seen it before on others but I don’t know what it means.” So I tell them what it means to me. I tell them when it comes to a mental health crisis, a semi-colon represents a slight pause, and then we keep going.  It isn’t a period, question mark, or the end.  Just letting them into my life in this way creates an instant bond. We don’t have to tell our stories we just know.  They see me as an honest person who is not afraid to talk about his past.

            Another thing I enjoy doing to fill up my days, is going to a used record shop not far from my apartment. This store is very well organized with a great presentation of old records. I like several kinds of music, but at this particular store I buy repressings of old jazz and soul records. I am very proud of my jazz collection.  Listening to music is one of my favorite things to do. I recently got a new record player and CD player. Good music is fuel in my tank. It keeps me going and runs my soul.

            I live in a very convenient location to a movie theater and grocery stores.  I try to use any of my outings as opportunities to speak to anyone with whom I make eye contact.  Just a smile or nod of my head gives me a chance to be social and fight the loneliness and isolation that comes with my mental health diagnosis.

            I have friends on social network whom I’ve known since high school, and I enjoy keeping up with what is going on in their lives. We’ve all changed since our earlier days. Most of them have full time jobs and families. I sometimes invite them to my apartment for listening parties, but they are so busy with their lives they rarely come over. It is quite possible they don’t know what to make of my mental illness. However, we are still friends, and I love them.        Recently  loneliness and depression reared their ugly heads in my life.  For  a couple of weeks I was feeling down and alone. I saw pictures of friends' children on social media and realized that would never be part of my own life.  Because of my mental health diagnosis, I made the permanent decision not to father a child.  I don't regret that decision, but I couldn't  help thinking how much I would have loved having children of my own.  Those feelings, as well as the fact that it was winter, dreary and cold and I couldn't be outside like I would like to be, made me feel really down and depressed. During those weeks, my negative thoughts began to control my thinking, and I had mental pictures of a gunshot through my head. This wasn't a random thought, but something I began to dwell on.

            My parents were visiting, and I hesitated to tell them about how I was feeling because I didn’t want to be hospitalized again.  However, I eventually told them about the visions and feelings of sadness.  After listening to me, they advised me to talk to my doctor at my next appointment which was coming up in a couple of days.

            At my appointment the following week I discussed with the doctor my most recent sadness and loneliness.  While looking at my medical records, my doctor noticed the last two times I was hospitalized I was having the same feelings of being “down.” She also noticed that I had been put on mood stabilizers at one point in my treatment, but not on an anti-depressant.  My psychiatrist talked to me further about whether my depression was part of my schizophrenia symptoms, or was it just depression coming from being alone much of the time.  Together we decided that my depression was related more to my loneliness and isolation, so she prescribed an anti-depressant.  I have been on my new antidepressant for almost two weeks, and I am beginning to feel much better.

            My mood is better.  I feel emotionally lifted up as if I have a weight lifted off my shoulders.  The negative thinking has lessened, and I again see happiness as a possibility.

I may be alone, but for the most part I am not lonely.  I feel blessed to have as much independence as I do.  I feel secure in my apartment and am thankful that music also acts as a kind of therapy for me. I have had this diagnosis of schizophrenia long enough now that I do not know what my life would be like without it.  Much of my former life is a distant memory.  I've had to made adjustments to accommodate my mental illness, but that does not keep me from living a full life. 

 

A Collaborative Experience--My Doctors and Me

            The patient/doctor relationship has to be one of  honesty and insight.  I have to be honest with my doctors and tell them what is going on. If I am honest, I have nothing to hide. I know my doctors are here to help me and not to hurt me, so being honest with them about what is going on in my life, as well as what symptoms I am experiencing, will help both of us to do a better job.

            I have confidence in my doctors' ability to both diagnose and treat my severe mental illness.  They have vast experience and knowledge in the treatment of schizophrenia.  When I was first diagnosed I began to do online research myself to learn about my illness.  One of the things I learned was that many other people have the same diagnosis as I, and I could learn from their experiences too.

            My doctors have worked with me during a trial and error period of learning which medications could most effectively treat my schizoaffective disorder.  I have been on several medications. I know my doctors do not want me on a dosage that is too high. In my attempt to help them understand my symptoms and prescribe the correct medication, I regularly write down my symptoms in a journal which they use to treat my illness in the best way. There have been instances when I did, in fact, feel I needed a change in my medication. My doctor  listened, which a good doctor will do, and my dosage was changed.

            A few years ago one of my doctors gained access for me into a national study of an older antipsychotic medication. It took awhile to get use to this new medication, but once it started working, it has been a game changer for me.  This medication requires that I get monthly lab work done, but this can be accomplished when I am seeing my doctors for regular monthly visits.

 

              On my current medication most of my days are symptom free. My psychiatrist, however,  brought it to my attention that some of my medications could have a side effect that may cause me to gain weight. In an effort to combat weight gain, I exercise regularly and try to watch my food intake.  I try not to snack at night, and I eat lots of fruits and vegetables.

            Early in my treatment for schizoaffective disorder,  one of my doctors prescribed a once monthly injectible.  However, at that point I was in denial about my alcohol use which was a very unhealthy routine, making my injectible ineffective.  After I gave up alcohol in all forms, I asked to be put back on the once monthly injectible because of the convenience of not having to take a pill every day.  Starting back on the injectible was  one of the best things I could have done for myself. The once a month injectible has not only made most of my symptoms disappear, but it has made me more sociable and less of a recluse.

            I considered it a compliment when one day my psychiatrist told me that I understand my schizophrenia better then most of her other patients. Her comment was an important stage in my recovery. It made me realize I am managing my symptoms well, and that has contributed to my overall well being.

            Sessions with my psychologist have helped me to learn more about my diagnosis.  For example, once when I was describing a voice I frequently hear, my psychologist told me this type of annoying voice was called a commentary voice.  Based on what I had experienced, this made perfect sense to me. It blew my  mind there was a word for what I was hearing, and that others had the same symptom.

            During one therapy session, that same psychologist shared the diagnostics manual for mental illness with me. I saw the many symptoms of schizoaffective disorder. I learned that bipolar and schizophrenia can be very similar.  Seeing my symptoms and diagnosis in print in this medical manual made me realize I am not alone, and it explained what I was hearing and seeing.  There is a definitive description for what I am experiencing.

            In the years since my initial diagnosis I have had one psychologist, but a multitude of psychiatrists.  Most of them moved on to other positions at different hospitals.  I begin each new relationship with an open mind understanding that I may have to repeat my medical history.  I understand that because I am getting treatment at a veterans' hospital these doctors see many patients every day.  If I can help them to help me, then our relationship can move forward with trust, honesty, and expediency. I have been blessed that I have had good doctors in my mental health recovery.  We are part of a team--each with an important role to play.  If I will effectively do my part, together we can make the best decisions for my health.     

           

 

Coping with Voices

 

            Like a lot of people with schizophrenia, I hear voices. I fully understand that these voices are one of the symptoms of my schizoaffective brain disease. Usually I hear these voices when I am alone.  I hear voices throughout the day, even when I am driving my car.  The medication I am prescribed helps me to manage the voices, but the meds do not make the voices totally disappear.

            Some of the voices I hear are a running commentary of what I am doing at the moment such as: “He is at the computer,” or “He is walking.” If I am cooking then they might say, “He is cooking.”  When I am cooking, these voices can distract me from cooking. I try to ignore the voices so I can concentrate on my cooking. These are the voices that seems to be easiest for me to control.

            My voices, that seem to come out of nowhere, can sometimes bring impulsive and racing thoughts.  So when they pop into my head, it can be frightening. When voices bring paranoia, I don’t just look through the peep hole of my front door, I open my front door and look around.  I have often heard the voice of someone who is messing with my car. I actually walk to my parking lot to see what might be going on. This experience can also create racing thoughts about someone conspiring against me, and the voices become part of the racing thoughts.  This can go on to interrupt my sleep.

            The voices of old friends can bring back happy, but sometimes unpleasant memories. There are times when hearing their voices makes me smile, and I am comforted.  It feels good to have familiar voices from people who were once in my life. Sometimes the voices from my old friends help me to block out the voices of enemies.

            I am a writer who submits first person accounts to different mental health publications. Often I hear voices belonging to an editor or a person who works for a particular publication where I have submitted my writing.  They never knock. Sometimes I just let the voice happen and just ignore it without even checking my peep hole.  As I write this essay, I am hearing my mom’s voice reminding me to use personal pronouns, like "I and me" because this is a first-person account on my schizophrenia. Thanks, Mom!

            Despite the chaos that the voices can create in my head, I have learned several techniques that help me to put them aside and carry on with my life in the most normal way possible for me.  I do not want to give the voices power over me or to strengthen them, and neither do I want to be influenced by them.

            Fortunately, I have a support system of family that I can call on whenever I need help.  They understand my situation and will not judge me.  They help me ground myself again in reality.  Hearing the real voices of those who love and care for me helps me realize that the voices in my head are a result of my schizoaffective diagnosis. Talking with them helps me to not get carried away by the symptoms of schizophrenia.

            When I am hearing voices, I try to firmly grip the moment or the true reality. I try to firmly grasp what I can hear around me--a bird chirping outside, a car outside my window, the sound of children playing in the  parking lot; what I can actually see around me--my books, pictures of my family and places we have visited, or my safe apartment.  I try to hold on to what is real, and what is actually going at that exact moment. This grounding activity brings me back to a place of calm and safety.

            Music has played such a vital role in my recovery from severe mental illness.  My favorite genre is jazz, and I have an extensive jazz collection of records.  When voices are distracting me from what is going on around me, I have found that listening to music can drown out the sound of the psychotic voices.  Most of the time when I am alone in my apartment, I have music going in the background. 

            I do not think I will ever be rid of the voices that have come as a result of having schizoaffective disorder, but I have learned through a proper treatment plan and other coping strategies, I do not have to allow them to control my actions or interfere with my life.  I have learned that I can distract myself in any number of ways, and I can go on to have a productive life. 

 

The Power of Delusion

            Back in the Army when I was in the depths of undiagnosed schizophrenia, I wrote long letters asking my friends and family if they could see and feel what I was experiencing while stationed in the Mojave desert.  I thought  if I could persuade them to stare at a TV or computer screen and fixate on it, then they would be able to hear my voice, and I could hear theirs.

            I tried to write everything that went through my mixed up mind into the letters I sent to my friends and family.  For example, my brother was a cook at this restaurant at the time. In my mind, I thought I could see him driving and showing up to work. In the letters I might ask, “Could you feel my presence," or "Do you remember seeing me?"

            I also thought if people made eye contact with me, they could instantly mentally connect with me,  and we could talk to each other without having to look at each other face to face. I could explain to them through our telepathy what was going on around me, and I thought it was possible for them to hear the same voices I was hearing inside my head. 

            Not everyone liked hearing the voices inside my head.  I thought that one of my friends started sobbing when she was driving home because of all the voices she was hearing.  I did my best to tell her it was going to be okay.  I remember telling my aunt who I thought was hearing my voices that she could block some out if she just concentrated on her work or exercised. 

            The voices in my head are often family, friends, or people I see around me. Since my delusions were based on real people, I had a difficult time accepting that it was a delusion because the delusion involved people I actually knew.  They were real....I knew them....and why wouldn't they be talking to me?

            I still see visions in my head of people I know even though I am now in recovery. I might be listening to some music, and I see my dad working at his desk, tapping his foot. I might be at the grocery store, and I forget to buy something on my list.  I always think it's my ex-girlfriend trying to confuse me.  Sometimes when I'm cooking, in my mind, an old man appears who is trying to make me undercook the chicken, so I would get e-coli or some other illness.

            Often these are recurring delusions that involve my life many years ago and revolve around an ex-girlfriend who I have not seen in over 20 years.  I think that either she or some of her friends are creating problems for me. When I can’t find something, my head immediately goes to blaming them for breaking into my apartment and stealing something as insignificant as a cover that goes over my disposable razor. It takes me a minute to think, why on earth would someone want to steal that.

            Another delusion I have is thinking that my ex-girlfriends can influence my thinking and is stealing my thoughts, or she makes me forget what I'm thinking in mid-thought. Sometimes that does make me so angry that I can’t remember what I was thinking.  I try not to give this delusion power over my thoughts.

            I have even thought my ex-girlfriend and her friends were trying to communicate with me through vanity license plates. Why would anybody want to go to the DMV to communicate with an ex-boyfriend?  Is that really worth a trip to the DMV?

            Because of my diagnosis of schizoaffective disorder, random thoughts pop into my head. One of the ways I've learned to cope with delusions such as the ones I have described is through ignoring and blocking them out.  Those thoughts can make me paranoid or in a split second I might think a delusion is true. My challenge is not to give validity to those delusions, but to think through them in a logical manner.  However, I will be honest and say that sometimes I have to call my parents to discuss a delusion with them to get clarification.  They have learned to help me by asking me questions about examining the evidence around me for clues as to whether or not a delusion is true.

            Schizophrenia can be an annoying little fly, darting in and out, around my head, annoying me, even though I am trying to ignore it.  Most of the time I know the delusion is not really happening, but the thoughts are still there, and they can seem very real to me. There have been times when the delusions became too much for me to handle on my own, so I discuss them with my doctor, and he has made  changes in my medication. I am glad I can be honest with my doctor. Delusions can be frightening, but talking about them can take away some of the fear with my support team can take away their power over me.

 

 

 

  Self-Acceptance

            Most people with a mental illness have something like social anxieties. They may ask themselves, will they accept me or will they understand. It is a hill to climb or a lock on the door. Even people without a mental illness feel and ask these questions.

            The most important thing we as mental health consumers can do is accept ourselves. Are you willing to climb that hill? If you are, in most cases, you will be glad you did.

People like to talk about sports, music, or movies to name a few. You can be that face in the crowd that people will be happy to see. We all have a place.

I experience my self-acceptance at a bar.

            Now a bar isn’t the best place to meet people, and if you take medication that is affected by alcohol, then you definitely should be careful, maybe drink less than moderation.

            There was nothing spectacular about that night. If anything, it was typical, but something was in the air, a day of reckoning as the headlines said after the assault after the World Trade Center went down. However, I was just a guy drinking beer at an Irish pub on a Friday night. Instead of being a victim of circumstance resulting in a mental illness, I stepped out of my comfort zone without fear of rejection. I had accepted the fact I was alone, I accepted the fact I had a mental illness, and I accepted the fact the some people didn’t know how to handle it. I didn’t care.

            I felt like I stayed a lot longer than my tab said I did. I paid for my five beers and left alone the same way I arrived. I had talked with an ex-hippie and some women. We might have just spoken about the weather but the last thing on my mind was the fact I had a mental illness. I have even forgotten instead of feeling sorry for myself, I left empowered.

            I walked to my car, turned it on. The radio was still on National Public Radio. It was an all Beethoven’s night. I turned it up. I didn’t turn it up, I blared it to the streets of Richmond. It was his ninth symphony, and it made me feel enlightened. Why should I feel ashamed of who I am? The bad experiences and rough times came back in flashbacks. I didn’t regret anything. They had made me who I am. I am enlightened.

            But I was still alone. I wanted to share my feelings with someone, but it was just about midnight and I had no one to call. Even if I did, they wouldn’t understand. I was fine with that. I had accepted myself. Alone, I felt as if I was standing on top of a mountain and yelling down at the valleys that had me in the grips of schizophrenia and raging war on the future. This was not the end, but only the start of becoming an individual that can stand and say, “I Am and will always be ME.”

 

 

 

Relating to a Schizophrenic

Jason Jepson

Schizophrenia Bulletin, Volume 42, Issue 5, September 2016, Pages 1081–1082, https://doi.org/10.1093/schbul/sbt004

 

 

            The only thing you had to eat was a breakfast bar or granola bar. Suddenly, you notice it is time to go home from work so you do. You sit down in your comfortable chair and start to watch TV while trying to figure out what you are going to eat for dinner. A Papa John’s commercial comes on. You are glued to the screen. Your mouth starts to water, and you now can taste pizza with 6 kinds of cheeses, pepperoni, and sausage.

            Another example is: You are in your bed, in a deep sleep. In your dreams, you are running for president. Your speeches are an inspiration, your mannerisms are emulated, and people cry out your name. You might even feel famous (in your dreams). Abruptly, you are woken up and for a split second, you still feel the aspirations of your supporters. Yet, there is no one in your room. Your alarm goes off; time to go to work.

            How about this one, you live in an apartment building, and you have neighbors above you, below you, and on the side of you. You can hear your above neighbor stomping around upstairs, and you can hear your other neighbors on their cell phones talking loudly. If you are not on medication, you probably just ignore it. You probably take for granted the fact that you don’t have to worry about what your neighbors are doing. After all, it is an apartment building. A schizophrenic question what is real and what is not all the time. I know I do.

            Most schizophrenics, myself included, just want silence. They may watch TV or listen to music, but that is all they want to hear. I often have to look through my peep hole in my front door to make sure nothing is actually going on. This helps. Sometimes, I even open up my front door just to see what is going on. I often find it helps to talk with my neighbors even if it’s just a simple, “Hi, how are you?” I do this to see if the voice in my head matches the voice whom I think it belongs to. Also, it is just nice to be friendly with your neighbors.

            My current issues are as follows: I recently have been getting the shakes. I figure it is either from my medication or the fact that I am a heavy smoker. I also have been hearing a lot of voices that I have to continually question whether or not they are real. So I have to increase the dose of my medication that my doctor suggested. If I do this, I might experience more shakes. I tried going on a different medication but it was horrible, and I would rather not do that again. As far as my own issues, a person can conclude that a schizophrenic is a survivor. A schizophrenic has to be strong and doesn’t take things for granted. A person with schizophrenia values things that a person without schizophrenia takes for granted.

            Some people in the mental health field feel that some schizophrenics aren’t self-aware. However, some are and it is a constant struggle debating what is real and what is not. People who don’t have this illness should look past the craziness and realize people who suffer from this illness are humans dealt a bad hand.

The 2 examples of everyday situations are ways for me to explain what some schizophrenics go through on a regular basis. If you can relate, don’t worry, you probably don’t have to be put on medication.

            The human brain is a wonderful and marvelous thing. I am sure you have been so hungry that you start to have cravings for certain foods. Maybe in your starvation, you have tasted them without them being around. Don’t worry, you probably are just hungry. Schizophrenics, however, (some of us at least) know that this is called sensory hallucinations.

            About the dream example, you might not have dreamt about being president, but you had another one. Maybe you were a spy. Then you wake up and for a split second, you think the dream is real. Don’t worry, you are not delusionary, but sometimes, or more often than not, a schizophrenic feels this and it lasts longer.

            Schizophrenia affects 1%–2% of the population. When it goes untreated, it can be catastrophic, but the brave individuals that seek treatment can live healthy, productive, and successful lives.

            The examples used in this writing are just a few examples. Because there are many forms of schizophrenia, there are many symptoms.

            An example of this is that your mood can fluctuate. I feel like this is self explanatory, but for those of you who don’t understand, think back to being a kid on Christmas day or observe (if you have any) your own kids at a birthday. They can go from excited to crying or sad very quickly especially when grandma buys them socks instead of a toy.

            A schizophrenic didn’t ask for their illness. The reason why they have it may not be known but schizophrenics just have to deal with it. With the distorted voices and delusions, just a simple walk around the block can be difficult. Driving a car can be close to impossible. Schizophrenics are disabled but you would be surprised by what they can do or what they know.

Now, because you can relate to a so-called “disturbed individual,” don’t hate, educate.

 

 

 

 

Reflections

Schizophrenia Bulletin, Volume 45, Issue 3, published 2 January 2018

            Looking back there are steps in my recovery from mental illness that I was totally unaware of as I was going through them.  Recently I’ve been thinking about the positive steps in my recovery. 

            It began when I finally accepted my mental illness and became consistent with my medication.  I realized that this was how life was going to be.  I would have this illness for the rest of my life.  It would be up to me to have a voice in how my future would develop.

            After I left the hospital for the second time, I went into a homeless respite for a period of time.  After being confined to a hospital I enjoyed this newfound freedom and the prospects of another step in a forward direction.  I was a 3 pack a day smoker, and then I was able to smoke whenever I wanted.  I also had an hour each day when I could walk or be picked up by a family member to go to a nearby lunch counter where I enjoyed their homemade German chocolate cake. I began to feel slightly normal again.  I could have been anyone eating at that café.  No one knew me, and no one could make a judgment about me.  Gradually I moved to a rooming house where I had my own room and my own TV that I could watch whenever I pleased.

            I took a major step when my Veterans benefits came through and I finally moved into my own apartment.  Words could not explain how happy I was. I finally felt independent again.  I was beginning to manage my mental illness.  I was responsible again for my own space in the world.

            Over time I realized that my three pack a day cigarette habit was having a negative effect on my life and my health. I was missing out on some parts of life because I had to go on a smoke break about every fifteen minutes.  With the help of God and Nicorette lozenges, I was able to quit.

            I had been drinking alcohol since high school.  When I wanted to plan an outing, it involved alcohol.  Yes, I was an alcoholic.  Drinking was more important to me than eating.  I finally decided to quit drinking for a number of reasons:  the calories involved were making me unhealthy; I was spending a lot of money; and more importantly, the alcohol was affecting my medication.  I enrolled in a Substance Abuse class at my Veteran’s hospital where I learned about being good when no one is watching.

            Stopping smoking and drinking were some of the most important changes that I have made in my life since my initial mental health diagnosis.  There have been other changes that may seem smaller, but have been helpful to my positive state of mine.  I started exercising and trying to eat healthier.  I also am taking more responsibility for my health by taking advantage of other benefits at my V-A, such as dental care.

            For the first time in my life I can say I am truly satisfied. This would not be so without the steps that help me to change my life.

            Today with the help of my veteran’s benefits and social security, I live in a very nice apartment.  There is a grocery store across the street, and a Costco a block away.  I have an outdoor porch where I can enjoy sitting in the sunshine and a fitness center where I can work out.  I don’t take any of these amenities for granted because I know that my life would spiral downward without my medication and my support system at the veteran’s hospital and also my family.

            What is the point of this reflection on the changes in my life?  It’s because I want everyone to know that things can get better. My experiences have made me more religious now but I will not preach, however, I do feel a since of pride in what I have been able to accomplish. I have found my voice as a writer, and my desire is to bring hope to anyone who might be facing mental illness.

            My advice for anyone is keep moving forward, avoid negativity, and don’t ever give up. Remember that exercise helps, set goals.  Find a release whether it is physical, mental, or emotional.  Everyone will have bad days, but make sure you stand up to them, and don’t be afraid to ask for help. 

 

 

 

 

My Stages of Recovery

Jason A. Jepson

Schizophrenia Bulletin, Volume 43, Issue 1, 1 January 2017, Pages 3–5, https://doi.org/10.1093/schbul/sbu024

Published:01 March 2014

 

When I first was diagnosed with schizophrenia, my first response was, “No, not me.” The response was probably due to what I thought mental illness was. I was scared I would be put in a straight jacket. I thought I would be closed off to the world. I finally came to the conclusion a person with schizophrenia must find help, or possibly wind up on the local news.

My First Day

            My sunglasses were still on as I entered the small room. My platoon Sergeant was behind me, and I noticed that the man waiting for us wore a nametag calling him a “Doctor.” I was wearing sunglasses because without them, my disease would spread. That meant, through the channels of extra sensory perception, my reality would take hold, and an individual would be able to speak with another individual without them being present.

Suddenly, as the naval doctor was asking me questions, my platoon sergeant yelled.

“Take your sunglasses off!”

The very thing I couldn’t do.

            Because I was use to following orders, I slowly took off my sunglasses. So it begins … the doctor will now be able to hear everyone I had made eye contact with for the last couple of months. The doctor sighed. I was confident that the voices had made contact with him.

I was given pajamas to wear, sent to a room in the psych ward that I would share with three other people. This was a psych ward. Never in a million years would I have thought I might end up in a place like this. I was scared, but resigned to whatever might happen.

            My platoon Sergeant had driven me from Fort Irwin, California in the Mojave Desert to Balboa Naval Hospital in San Diego. During the long drive to the hospital, I felt a sense of relief. At my Army base I always had to keep my guard up. I didn’t trust anyone around me there. I had made eye contact with all of my fellow soldiers, and so the voices were influencing them too.

            Several things that I had experience in the military may have conspired to enable me to have the powers that I have now.

            I was stationed in Fort Knox during my basic and advance training. One night, we were training on the Calvary scout main weapon the M3A3 Bradley fighting vehicle. There were three of us in one track. I like to think I drove it to the best of my ability. This of course was before my special powers took hold of me. Everything was fine until I was in the back of this vehicle and my seat had a broken seat belt so I tied the two ends that I did have around me. The driver who was in front seemed to be maniac behind the wheel. He hit a bump and I hit my head on a bar overhead.

            I was knocked out for a second. When I woke up, the trip was over. But the person sitting next to me was crying. I guess he thought I was dead. When I moved, he stopped crying.

The second instance was at Fort Irwin. I was in the field during a rotation, and the soldiers in my team were parked in a line.

            It was getting dark and someone called me over. I went, and the next thing I knew five guys were trying to wrap my body in duct tape. I fought them off by pushing and kicking away anyone trying to tape me up. It took a different soldier (from a different platoon) who was bigger than me and stronger than me to bring me down. Imagine fighting for your life and losing. This was initiation. I was the new guy. They also taped someone else I came in with but not as bad. They didn’t put tape over his mouth like they did me.

            This experience split my psyche into two realities. There was an everyday reality and a reality that was all mental. The reality I explained. The reality that inspired me to go to mental health so I could figure out what this really was. A part of me thought it was a new step of evolution.

            I was later Honorably Discharged. At home my behavior was very erratic, so much so that my parents had to call the police. They took me away in handcuffs. It was a hard thing to go through, but now, I am thankful for that experience because I got the treatment I deserve. I finally was on medication.

Risperidone Tangents

It came to this …

Voices surrounding me like bumblebees in spring.

Women kissing … the love buzz

Beating in my chest.

Feast your eyes on the loner,

And hear the voice of God.

Whispers and tantrums,

Like bacon sizzling in your brain;

Finding rhythm in hallucinations

Depicting voices that acting like a searchlight

Ceased and dissolved in a single green pill,

Creating a lonely apartment.

            This is my poem about schizophrenia. “It came to this” is bringing the reader up to speed. Voices sometimes seem like bumblebees. Each sting is a voice. When I had made eye contact with a woman, I would often feel a burning in my chest which I thought was the woman falling in love with. The warm sensation was called the love buzz. For those who made eye contact with me, they could see me the “Loner” in their head just like I can see them in my head. I also thought I could hear the voice of God. It was calming and relaxing. The voices were sometime at a whisper, and sometimes they seemed mad. The voices, sharing my brain, can be compared to bacon, always sizzling in the background. Hallucinations in my mind move quickly with rhythm-like boom, boom, boom. Some of the voices can act like a searchlight that helped me weigh through my delusions.

            Stopping or maybe dissolving in a green pill called risperidone. When medication starts to take hold, and the voices and delusions subside, I think the person living with schizophrenia feels lonely. They have depended on them for so long, and chances are the voices make them feel important. Hopefully, they won’t stop taking their medication.

How Can I Help My Family and Others Understand My Schizophrenia

I am not a mental health professional. I respect so much that profession.

I’ve recently skimmed an article about psychiatry. The very first sentence states how hard it is for a person to accept that a loved one has a psychotic disorder.

            I’ve never spent a long time thinking about my family. How do they carry this weight? I am sure whether or not the mental health consumer has a roof over their head or is taking their medication enters into it. I am sure my parents would want me to be able to communicate how I am feeling, and if I am taking my medication. Also they would want to know that when it gets hectic that I need to be left alone just like I need to know that it is alright to want to have a few minutes to myself.

            My parents would also want to know I am taking care of myself. Your job as a mental health consumer is being able to tell your doctor that you are okay or telling him or her your symptoms. You also need to stay on your medication.

            That sentence in the article I read can help with others too. For someone who doesn’t understand what it is like knowing someone with a mental illness, ask the question, “What if your dad, mom, brother, sister, husband, or wife had been diagnosed with schizophrenia?”

            Their world as they knew it would be over. They may not know who to talk to because so 

many people don’t understand schizophrenia. My mom looked online and tried to find everything she could on the subject. There are different groups a loved one can go to get help or even empathy.

            If you don’t understand schizophrenia just do your best to try to understand the family and friends. What are they going through? It is important to know the simple fact that it isn’t anybody’s fault.

            If I were asked to describe my schizophrenia, I would describe it as this: Schizophrenia, it is fighting off impulses that are wrong. They just pop into your head. You constantly have to fight the unreal.

            I sometimes go to Arby’s. I go through the drive-thru. Monday there is roast beef, Tuesday there is turkey, Wednesday there is roasted chicken, and Thursday there is meat loaf. You also get four sides and muffins. I tell them what I want on any given day, and immediately I think they are spitting on it or doing whatever to my dinner. At the window, I look around to see if I can catch them in the act. Nothing. I pay, get my food, and say thank you.

            Schizophrenia is receiving a delusion, or just a thought, and not reacting because you don’t know if it is true or not. Add stress to that and that is why I can’t work. That is why I can’t live a normal life.

What is a normal life? You have a rough definition when you have a mental illness.

Me, Myself, and I

            Last night, people were going up and down the stairs of my apartment building, trying to be quiet. I thought they were talking about me.

“Jason lives there.”

When I go through something like this, it is very hard to think rationally. I get swept up.

When I hear voices speaking negatively about me, first I take a deep breath. Then, I catch myself in the moment. Are people really talking about me? If you do this, chances are you will find out things are quiet in and outside your head. Another way to cope is what my therapist told me, check the evidence. My front door has a peep hole. I look through it when I think something is going on. I look through it and you know what, there is no one out there.

Just think of this, now if someone was talking about me outside my door wouldn’t they whisper so I couldn’t hear them.

When you think strangers are talking about you; you need coping skills.

When you have schizophrenia or any type of mental illness, you have to be in tune with yourself. You can be your own therapist or doctor without a psychiatry degree or PhD in psychology.

To catch yourself in the moment is to be self-aware. Use your senses, listen, look through the peep hole or window. If you have been taking your medication, then chances are you won’t hear or see anything. For the most part, you have to know this, people mind their own business. They have their own worries and obligations. Chances are they have nothing to do with you.

Teach them to be self aware

Schizophrenia Bulletin, Volume 39, Issue 3, Published 01 November 2012

 

            Several Schizophrenics think that their voices and delusions are true. I have been on my medications for years now, and even I have to tell myself that I am not that popular. You probably think that sounds simple enough. If I don’t do that I do my best to ignore them.

            I believe that most schizophrenics do hear positive voices in their head. I thought I could hear the voice of God, and it was God who told me to refer myself to mental health at Fort Irwin California. I also thought it was a voice of God who told me that I will get the help I needed in my second stay in the psyche ward. Believe it or not I think it was that voice that helped me to be self aware to question what I was feeling or in some cases ask if something was really going on.

            I sometimes hear negative voices too. They can be insulting and they can tell me to kill myself. This is part of the struggle. It something I don’t like to talk about. When I hear these voices I do my best to stimulate my brain and be active or I try to ignore them.

            The realization that what is going on in your head isn’t really going on is a tough pill to swallow. For a doctor to tell a patient to be self aware or to tell them that the voices aren’t real can be taken wrong. So waiting is important. Wait until the medication takes hold and even the patient will wonder why have the voices and delusions have subsided. I felt like I received an epiphany when this happened to me. It was cathartic.

            I am sure doctors and other people in the mental health field struggle with this. I never had a person in the mental health field tell me to question what was going on inside my own head until later on in my recovery. I never had anyone for that matter tell me that my delusions weren’t real.

            I think if a doctor told me it. I probably wouldn’t believe it. Maybe there should be better “bedside manner” I respect doctors but maybe instead of putting themselves on a higher level which maybe they deserve, they should be a friend or maybe a neighbor.

            How can doctors do this? You might be asking.

            Maybe they should start a meeting by talking about what movie they just saw. Talk about the last football game they just saw on tv. If they don’t like sports talk about their kids rather it is a nephew or a niece. They may not want to go into talking about the holidays, because even people without a mental illness can feel lonely or depressed during these times. In conclusion, build a relationship. Show some sensitivity.

            I have had some doctors (don’t want to mention any names) that I felt the less I say the better I am. This will not help the patient or the doctor. There are some doctors who feel numb to the mental health field. They may even feel that it is all the patients fault. I ask all doctors and staff of the mental health field don’t give up, speaking for the mental health consumer, we need you to be optimistic. Maybe tell the patient you are optimistic or try your hardest to be positive.

I have to plead ignorance on this one, but I don’t think you have seen it all.

            You may have heard about peer counseling. This is a good program. Some of you in the field know that we do get better. The patients who have maintained their stability and stayed on their medication for a couple of months should be invited back to the psyche ward. This would help the patient who have stayed on their meds because it will show them how far they have come. This would help the patient who is actually in the psyche ward because it is an equal.

            The stable schizophrenic can go into their past delusions as long as it isn’t stressful. Both schizophrenics may find some things in comman. Both would experience hope whether it is seeing where they can go or how far they have gone. Imagine inspiring a mental health patient into going into the field of public service.

            Questions to ask and statements by the newly formed schizophrenic citizen as a peer counselor or public servant:

            “What medication do you take?”

            “How long have you been in here?”

            “Do you know it does get better?”

            “Do you write in a journal? You should start.”

            “How’d you sleep?”

            “Who’s your doctor?”

            “Everyone falls; it is rather or not you can pick yourself back up again.”

            “You know you will have to stay on your meds.”

            “No one is after you; you are safe in here.”

            “You know if you are not compliant they make you stay longer.”

            To name a few conversation starters.

           

            Of course, the staff should make the decision rather or not the patient in the psych ward can handle a visitor. I assure you it is possible to feel lonely in the psyche ward even when you are around people who have some of the same symptoms that you have. It would be nice to have some positive energy on the other side of the table.

            How can doctors be self aware?

            I know that psychiatrists are in high demand. There is probably not enough to go around in some cases. The ones we have are probably are over worked.

Dennis Leary said, “Happiness come in short doses.” I think that means grab hold of the simple things. That can be a diet soda, cup of coffee or tea, or observing nature when you have the chance. Maybe they should have a break room that plays cool jazz (for those of you who don’t know too much about cool jazz you should buy Miles Davis Kind of Blue to start) or find some other way to relax when they take a break. Anyway for those of you in the mental health field, thanks for your service.

            Finally we all have to be self aware in our little piece of the world. We all have to know what is going on in our environment rather it is in our minds or outside. This will help us be mentally strong and emotionally strong.

 

 

Never Mind... I Have Car Insurance

Schizophrenia Bulletin, Volume 46, Issue 2 Published 28 November 2018

            I had a full time job at an Italian restaurant, and I was flunking out of college. I was just in a relationship that ended badly, and I thought the friends of my former girlfriend were spreading rumors about me. When I was by myself or walking to my job, I often heard mean voices calling me a loser and other bad things. I had stopped going to class because the voices in my head coming from two people or a crowd were making me feel inadequate and alienated. I thought they were making fun of me, for whatever reason.  I know now it was the start of a break down.

            The only thing that was going good for me was that I had good loyal friends that would do whatever I asked them to do. They would listen to me, but they did not have the help that I needed.  As I tried to reach out to them, I know now that some of my behavior might have frightened them.

            One day my parents were out of town so they asked me if I could water their plants. I told them I could. The night before I quickly went to bed because of a long shift at the Italian restaurant. In the early hours of the next day I heard something being sawed in the parking lot of my apartment building. Intuition told me it was my car being vandalized, and that it was probably from my ex-girlfriend. Because I was so tired from my long shift, I didn't go out to see what was going on. I figured I would see what had happened in the morning.

            I woke up the next day, had my coffee, and walked to my car in the parking lot of my apartment building. I turned the key and my car started to sputter like a model from the 1920’s. I didn’t know what to do about it, all I know was I had to water my parent’s plants and flowers. Suddenly I hit a bump, and the whole tailpipe started to drag behind my car.

            The combination of the horrid faces of the drivers around me at the stop light and the sound of the tail pipe on the blacktop, made me feel like my psyche was slipping. I thought I was seeing static from my brain which was beginning to crash like a computer. The failure of college and my ex-girlfriend’s friends spreading lies about me were pushing me closer to the bottom. I was in survivor mode.

            Fast forward a few years, some classes at the local community college, a job at a private pre-school as a teacher assistant, a stint in the army, and a diagnosis of schizo-affective , and I still had paranoia about people messing with my car. However, I was now taking a medication and had a monthly appointment at the veteran’s hospital with my psychologist and psychiatrist.  I was beginning to learn about Cognitive Behavior Therapy where I searched for evidence before coming to conclusions.

            I've noticed that when I have the paranoia about someone messing with my car it's  usually when I have plans for the next day. Plans such as going to the veteran’s hospital, going to my parent’s house, or just anticipating a vacation. I hear voices outside, but I can’t find the faces of the voices. I now park my car in view of my apartment under a street light so I can spring into action if I someone was messing with my car.

            I would tell my psychologist about my paranoia and also my parents. Honestly, just talking about it seemed to help. My parents tried to help me with this paranoia by having me put my car in their garage when I visited them.  I could sleep better knowing my car was safe.

            Truth was, I was living in an affluent apartment where a few people would drive better cars then I was driving, such as Mercedes and BMW’s. I drove a Toyota Camry. Also there were some young people in my apartment building who liked to stay up late especially around the weekend. My parents would say that my car would be the last one to mess with because of the more expensive cars in the parking lot.

            My parents would say, even if something happened to my car, the money I got from my disability took care of the car insurance, and if by chance my car was ever vandalized, my insurance was current and paid up.  My car insurance would take care of it. Since I moved here nothing has happened to my car in about six years. Sometimes bad things happen, and you can’t predict them. Sometimes I am awakened by loud voices at night. Sometimes I decide to check them out, and other times I go back to sleep. 

            With mental illness comes stigma involving what others might think of me, so in the day time when I am awake I talk with my neighbors, not huge deep conversations, but just greetings. Sometimes the voices I hear in the daytime don’t match the voices at night. There is also the wind that sometimes sounds like a knock at the door.

            Knowing I am okay is all I care about. Material items in my life can be replaced. I am safe inside my apartment, and I am loved by my family.  That is all I need. 

 

 

A Positive Detour

Jason A Jepson

Schizophrenia Bulletin, Volume 44, Issue 5, September 2018, Page 947, https://doi.org/10.1093/schbul/sbw070

Published:17 May 2016

 

 

 

            Sometimes life can take detours for which you had not planned. Coming out of high school and entering college, I thought I would write poetry and fiction as my career. That was a goal I was moving toward. In many ways I was wearing blinders, but the only thing I cared about was the written word. I spent hours jotting poetry in a spiral notebook that was not far away from my back pocket. I figured I was not going to be a best-selling writer, but I enjoyed the high that came from a single line that provided temporary inspiration.

Suddenly a slap to face knocked the blinders from my eyes. I received a diagnosis of schizoaffective disorder. How would this detour affect my writing? In the beginning stages of recovery, I felt no inspiration to write. It was more than a mental block—I lost my inspiration. My inspiration took the form of delusions that I didn’t want to describe in writing.

Over a longer period of time, I slowly began to write about my own personal struggles with my illness and other positive ways of dealing with my symptoms. Somehow I started to write about everyday living with a mental illness. After that I began to realize that I wasn’t the only one.         There was a whole community battling the same demons I was battling. With my permission one of my doctors began to share my writings with some of the other patients who had similar diagnoses as I. They told me that my writing was helpful to them and that gave me more motivation to write for them.

            Without my diagnosis of mental illness, I’m not sure where my writing would have taken me. Before I never thought about writing as helping someone. I don’t carry a notebook anymore, but I have found creativity and insight in the detour that life gave me. Now, I can’t imagine a life without this detour.

 

 

 

 

How Do You Know If You Are in La La Land?

Jason A Jepson

Schizophrenia Bulletin, Volume 43, Issue 4, July 2017, Page 683, https://doi.org/10.1093/schbul/sbu081

Published:09 June 2014

            Schizophrenia—It is like being in a crowd sometimes and everyone is making you turn turn turn around to listen to them but you are too busy driving the bus.

Here are some questions to ask yourself or a person living with schizophrenia:

•           Do you believe someone is stealing something from you?

•           Are you getting messages from the TV or radio that no one else can hear?

•           Do you hear voices in your head no one else can hear?

•           Do you believe a person or persons can inject you with their thoughts or take your thoughts away?

•           Do you believe people are against you?

•           Do you see things or smell things that aren’t there?

            Forget thinking that you are a superhero with special powers because that is a delusion. Thinking that you are special enough to get messages from the TV is also wrong. Schizophrenia trades rational thinking with irrational thinking. It can have you staring at a wall for long periods of time or pacing up and down a hallway. It can only be treated with medication, and still your senses can be jumping around.

•           - If 1 and 5 people have a mental illness, then 1 and 100 have schizophrenia.

Sensory Hallucination

            Seeing—Just now a person who was in the same restaurant my mom and I were having breakfast in, threw my notebook on the floor. My notebook didn’t actually end up on the floor, but I faintly saw him standing up frustrated. He was frustrated because I saw him as a delusion, and not as a real vision.

Smelling—You may be at a fish place and smell hamburgers.

Hearing—Could hear voices that can be insulting or uplifting. Sometimes you think people are listening in to your conversation or can know your thoughts.

            Sometimes it can be a feeling not necessarily in touch but kind of like feeling someone else’s presence. One time I thought Bill Murray (comedian, actor) helped me to write a poem. He thought of the line Chasing windmills.

The man inside your head

Holds his laughter

While you hold your breath

At oncoming cars

And pedestrians

He chases windmills

And belongs with

Friends inside his head

Streaming on the page

No punctuations

From the chaos of conversing

Taking a lower dose of sleep meds

But no vitamins

In the crowd in his head

He is often called upon

But outside his own mind he is no one

            It isn’t the best poem, I guess that is Bill Murray’s fault. I didn’t believe it at first but then I got swept up in it.

What Should You Do?

            Sometimes medication stops working, and sometimes it takes about 10 years to be put on the right medication. Remember, the pressures in finding the right medication doesn’t fall on your shoulders. All that stuff is hard to understand so it is better to leave it to a professional. You should be compliant. I have taken pills and have gotten injections. Some have worked a little; some haven’t worked at all. I am trying a new medication as I write this. Whatever happens, make sure you hang in there. Listen to your doctor, attend group or one-to-one therapy, and remember you are not alone unless you choose to have a pity party or something. I personally have stopped drinking because alcohol can affect your meds negatively. Sometimes you just must play by the rules.

 

 

Benefits of Staying On Medication

Schizophrenia Bulletin, Volume 47, Issue 1, published 11 October 2019

            The benefits of staying on medication helps you to be on the path to recovery. It may take some time for your doctor to determine the exact prescription for your needs. There is a possibility that a combination of medications will be the best fit for your situation. For me, it took several months to get the exact prescription to best treat my symptoms.  Do not be surprised if a new and better prescription is offered occasionally. For me a monthly injectable was added to my treatment plan which helped me tremendously. Medicines are available that can reduce the impact of symptoms, increase your independence and quality of life.    

            The first benefit I realized about staying on medications happened while I was in a Homeless Respite. One of my symptoms was that I thought I had special powers. My clouded thinking made me think that when I looked into other people’s eyes, I could know their thoughts. Staying on the right medications made me realize I didn’t have special powers. That cloudy thinking was in fact a symptom of my schizophrenia. The benefit of staying on medication made me understand what is real and what is not. This was an essential first step in moving forward. 

            The second benefit of staying on medication was that I began using a strategy to determine if my delusions were real. “Checking the Evidence” is something I often do to separate delusions from reality. For example, I could be inside my apartment and think that I hear someone talking about me outside my door. I go and open the door to check the evidence. There is usually no one at my door and certainly no one talking about me. If there is no evidence then, it is my brain disease talking.

            The third benefit indirectly relates to the effectiveness of my medication. My medication will not do everything it’s supposed to if I drink alcohol. I soon realized that binge drinking increases paranoia, voices, and delusions. No matter how good the medication is, by drinking alcohol it undermined the affects of the medicine.  It was difficult to stop the bar scene, but it was a necessary decision that would help me live a productive life.

            Making sure I was under the care of a mental health professional is the fourth benefit. This gives me face time to a medical mind who looks at me through a fresh set of eyes and they are aware of the latest medications and support systems for recovery. Keeping up with my appointments keeps me from falling through the cracks. Most recently my health care provider put me on an anti-depressant. This third medication has lifted my spirits, given me more energy, and has decreased negative feelings. Now I rarely feel out of sorts and the negative feelings have been replaced with increased confidence. Bottom line staying on medication and being under the care of a mental health professional are steps to the foundation to getting to a major turning point in my recovery.

            After following these steps, one day it dawned on me that I was in a good place. Taking the correct medications managed my symptoms quite well. I wondered what was next in addition to my daily routine. I understood I had to take my medications to live a productive life. One of my first thoughts was wanting to assist others with the same diagnosis. This led me to the idea of using my writing skills to help others in their recovery journey. Thinking that writing about my experiences may help others, I googled “first person accounts” related to schizophrenia and my life changed for the better. An academic journal popped up called Schizophrenia Bulletin published by Oxford University Press. They accepted first person accounts of patients with schizophrenia. They didn’t pay, but still it was a way to get my story out to mental health professionals who work every day with patients with schizophrenia.

            My first two articles were rejected. My third submission was accepted and I began sharing experiences that mental health professionals could use in treating patients. Once I was able to get my eyes off myself, I was able to assist others in their recovery journey by writing about my experiences. None of this would have happened without consistently taking my medications and meeting with my mental health professions. 

 

A Vet’s Recovery

Schizophrenia Bulletin, Volume 42, Issue 1, published 19 August 2015

 

            I have just passed my 10 year anniversary since being diagnosed with schizophrenia.  Where has the time gone?  Some battles are over after one skirmish, others last a lifetime. 

            When my diagnosis came, my life was full of paranoia, delusions, and I was out of control.  I reacted to every overpowering influence with bizarre behavior.  The voices kept me isolated, on guard even when I was trying to sleep.  I was in control of a world that no one else could see or hear.  In truth, I was on a one way street that would only lead to my demise.

            The last ten years has not been easy.  There have been hospital stays, numerous medications changes, and major lifestyle changes.  All of that has brought me to today where I am in a state of constant recovery.  I am fully aware that recovery never ends.   As simple as it may sound:  I must follow the rules of recovery.  Not for the next month or six months, but for the rest of my life.  About those rules of recovery.....

            Rule Number One--Stay on your medication.  You may start to feel better after a month or two, but that does not mean you can go off your medication.  You are not "healed."  The medication is making a difference.  NEVER make a medication change without talking to your doctor.

            Rule Number Two--Find your support system.  I have been fortunate to have great family support, but I understand this is not always the case.  There are mental health professionals at McGuire who can guide you to finding your support system.  Church groups, neighbors, and your fellow veterans are all places where you will find people are on your side and will give you the support you need to continue your recovery.  You cannot do this along; you must ask for help.

            Rule Number Three--Find something you enjoy doing.  This activity will shield you from the troubling thoughts that get into your brain.  Some examples are: music, brain game, writing in a journal, exercise, following a sport or a team.  Use a computer to virtually visit the places you served while you were active duty.  Stay current by watching the news and other informative shows such as the History or National Geographic Channel.

            Rule Number Four--Stay away from habits that might be harmful to your medication or your health.  When I first began taking my medication, I thought alcohol would keep the voices away.  I was wrong!  I had to totally quit.  With the help of God, I was also able to quit my 3 pack a day cigarette habit. 

            Illness, mediation, and recovery is a battle.  The four weapons that I have mentioned above will give you a better chance of winning the recovery battle.  As a veteran you know what fighting a battle means.  It is not easy, but ongoing victory is possible.   In the ten years since my first diagnosis, I have fought homelessness, alcoholism, isolation, and at times hopelessness, but after ten years, I know I am here to defeat my illness.  I am not defined by my illness.  I am Jason Jepson.  I have schizophrenia, and I am recovering.

 

When Do You Tell Someone You Are Schizophrenic?

Jason A. Jepson

Schizophrenia Bulletin, Volume 39, Issue 5, September 2013, Page 947, https://doi.org/10.1093/schbul/sbt002

            Telling someone you are a schizophrenic can be as difficult as coming out of the closet for a gay person or telling someone you are a Yankees fan.

            We are all mutated cells, meaning we are not perfect. If more people could see a mental illness like that, then the world would be a better place for those diagnosed with schizophrenia.          There is little education about how to be friends with a schizophrenic. Even though they may have symptoms under control, many schizophrenics feel they cannot be open about their illness for fear of being judged or labeled.

            So, when do you tell someone you are schizophrenic? I usually use this response, “I had a mental breakdown when I was in the Army,” and then I leave it at that. If the person inquires further, I might answer that I don’t want to talk about it.

            I have told people I am schizophrenic before, and for the most part, they had no response. If it is another veteran such as myself, they usually say, “I am sorry you had to go through that.”

            I often wonder if someone would understand if I told them about my diagnosis? When I tell someone, will they imagine a gunman, like the one in Arizona or the one at Virginia Tech?

            Once when I was going to get a haircut, I had some time to kill, so I went to the bar beside my barber shop. There was a man sitting at the bar having a conversation with himself. Many of us diagnosed with schizophrenia have conversations with ourselves. Someone had told me that this person was schizophrenic. They used the gesture where their finger goes around in circles close to the temple on their head to tell me what was wrong with the man.

They said, “He has issues. He is crazy.”

This response made me mad so I said, “So am I.”

They laughed. “No, I mean he’s like schizophrenic.”

I smiled and nodded.

            Back at the bar near my barber shop, a lady was sitting on the other side of the man, along with her friends. She stared at him for a few seconds and then turned around to her friends.

“He asked me if I was a spy,” she told her friends.

            I eventually got my haircut and decided to go back to the bar to see if I could talk to the man or even help him in some way, but he was gone.

            Usually when I tell someone about my diagnosis of schizophrenia, it is because our conversation is about feelings or emotions. Some of those people have gone on to ask me, “What is it like?”

            I do my best to explain by answering that I constantly question what is real and what is not. I become the educator, trying my best to explain to them that this mental health diagnosis can be treated.

 

Senses or Schizophrenia

Jason A Jepson

Schizophrenia Bulletin, Volume 43, Issue 4, July 2017, Page 684, https://doi.org/10.1093/schbul/sbu192

Published:26 February 2015

 

            My last appointment with my psychologist she showed me an article she found online. She seemed eager to see what my opinion was. I was able to read the first paragraph and then I tried to just skim what was on the page.

            One thing I got from the article was that someone found the map of DNA in schizophrenia. I guess went away thinking maybe they are close to a cure. Also I thought Pharmacology will probably drag their feet with it so they can make more money off the patients suffering with the mental disorder.

            My doctor was surprised I wasn’t as surprised as she was. The article was blurry and it was hard for me to understand. On a good day I would be able to understand. My doctor thought maybe I needed glasses. She handed me hers, and I put them on.

The article was even more blurred. I quickly took them off.

“You might need to make an eye appointment.”

“Could it be my schizophrenia?” I asked.

            In her office a person can usually hear muffled talking and sometimes laughter outside or heavy door. I have been seeing my doctor long enough that she can read my eyes questioning if the voices are going on outside or are they actual voices that only I can hear in her small office.

            Ever since I got a computer and the Internet, I tried to research my illness. I looked at science articles, first person accounts, and also schizophrenia poetry. Oddly enough it made me feel normal when I tried my best to understand. It made me feel normal like I wasn’t the only one feeling or going through this disorder.

            Reading about other diagnoses made me equipped enough to realize mental health concerns all over in the art and entertainment industries. I don’t think they should be glorified but if you can make money educating by all means. I haven’t found a way to make money off of my disorder. However, I do enjoy when my first person’s accounts and poetry gets published.

            When I can express myself for the mental health community it makes me feel very good about myself.

The unreal reality

Was told by a scream

Follow by applause

With a crooked smile

After what was like a stroke

I fell again skinning my knee

And wondered if my limbs were made of rubber

Sometimes I can’t stand

Sometime I stand eye to eye

With my own mirrored pupil

A sprinkled single tear

This could be my friend

Without a name

A neighbor without a door

Pet without hidden rage

We sleep

Hours and hours to avoid

Enemies with a voice

From the past

Still can’t understand

Why I hear it

From the last psycho-social breakdown

            This poem is the symptoms of schizophrenia and side effects of the drug clozapine. Tuesdays are when I get blood work done and every 2 weeks get a shot of resperadal concentrate.

The unreal reality is blurred action that I know it isn’t going on behind the scenes.

At the end psycho-social breakdown isn’t a huge breakdown. I guess it is similar to a stroke where my joints feel like rubber and I fall.

How I made the Decision Not to Have Children

Schizophrenia Bulletin, Volume 45, Issue 6, published 02 July 2018

            It isn’t because I don’t like kids, because I do.  I get excited with my friends when they post pictures of their kids on social network.  They are beautiful, and I can see that family means so much to my friends.  The best job I ever had was a pre-school teacher’s aide before I joined the Army. Every day was something new with these kids- finger painting, building blocks, singing, and laughing. Watching them learn new ideas and catch on to new concepts was thrilling.  They called me Mr. Jason--what a great title!  As much as I loved being around those pre-schoolers, I made the permanent decision not to have children of my own.

            I can't help, however, wondering about the positive sides of parenting which I won't experience.  I don't know what it is like to actually watch your child being born, and I will never know.  Teaching them to spell their name; watching them learn a new sport or musical instrument; or go from training wheels to a "big boy" bike.

             Two experiences had an impact on my decision not to have children. I heard a story on NPR about a woman who was riding in a taxi and passed her father who had been diagnosed with schizophrenia, as he was climbing into a dumpster.  Another was a one woman show in which a person talked about her mentally ill parents and how that had affected her life. Her show was meant to be funny, but I couldn't help feeling sorry for her.

            I know that a diagnosis of schizophrenia and the responsibility of  a child would be too intense for me to handle. Kids can be very resilient, but they can be fragile at times.  I've watched my nephews and my niece experience some of life's triumphs and failures.  Both of their parents have to be fully engaged in order to continuously give them the attention and support they need at all stages of their lives.  I am also aware that children can misinterpret events going on around them.  It would be easy for a child to misunderstand some of my coping mechanisms and my reactions.

            I can only imagine what it would have been like to have a child of my own.  What if I decided to have a kid? Even though my medications lessen the symptoms of my mental illness, I still can be distracted by voices or some paranoia.  A parent should never be distracted around a child.  Sometimes when I'm having a bad day, I isolate myself to cope with a symptom.  As a parent, I would not be able to take a break or "time out" from my family.

            After I had made the decision myself not to father any children, I felt it was important to talk to my support system.  I talked to my parents who were understanding and let me know that they would not in any way be disappointed.  Next I talked to my primary care physician at the V-A where I receive my medical care.  She suggested I might want to talk to my psychiatrist and psychologist.  Both of them were supportive of my decision to have a vasectomy.  They had worked with me for several years and were confident this was my choice, and it was an appropriate one for me.

            When I was eighteen, I didn’t want a normal life, but I wanted to have an extraordinary life, however, a diagnosis of mental illness was not what I had in mind.  On my journey to today, I have been through many ups and downs.  I'm thankful I did not have a child who needed my time and attention.  Passing on a tendency towards mental illness is a chance I am not willing to take. At this time in my life, my own issues preoccupy much of my days.  I know I would have difficulty being a good husband or father. I have made this decision for my unborn children. I'm playing it safe, and for me, this is a good decision.   

 

Motivation for Writing

Schizophrenia Bulletin, Volume 45, Issue 1, published 09 April 2018

 

            In addition to my first person account writings, I like to write poetry.  Should someone ask me to use an analogy to describe my writing process, I would answer that writing to me is like water skiing.  In writing, as in water skiing, there is that tug that I feel when an idea tries to take hold.  My schizophrenia causes words to just pop up, and sometimes I have to maneuver around them, not knowing what will make sense.  All it takes is an idea to pull me up, and I hold onto it, letting the words flow.

            In water skiing there may be a few wakes to cross or obstacles to dodge in the path.  I try to get all my ideas down on paper, knowing that some of my written thoughts will be edited to make my writing clear and easier to understand.  Sometimes I am the only one who knows exactly what I am trying to say, and when I talk it out with someone, I find a better, and often shorter way to describe my thoughts. 

A poem I just wrote called:  "Another Dead Rock star"

 

                                    Don't be fooled by the shadows.                                                                                                                                                          Another dead rock star.                                                                                                                                                                        Whether or addiction or suicide,                                                                                                                                                           You're not a kid anymore.                                                                                                                                                                                A tsunami of dead end thinking.

                                    Pain rages up the spine towards the brain.                                                                                                                                              You are not alone;                                                                                                                                                                                         You are not alone.                                                                                                                                                                                       Your best prescribed escape,                                                                                                                                                                     Only brings a sleep                                                                                                                                                                                                           From which you will not awaken.

                                    What can we learn                                                                                                                                                                                               From the shapeless form of pain?                                                                                                                                                                  It can't be restricted,                                                                                                                                                                                              Or pushed outside a boundary.

                                    We cry as a release,                                                                                                                                                                                         Or to create.                                                                                                                                                                                                           It's a subtlety.                                                                                                                                                                                            Another war against distress                                                                                                                                                                        And another dead rock star.

            The first line of the poem, "Don't be fooled by the shadows," was a thought I had a few days ago when I saw a shadow on the carpet in my bedroom.  At first I wasn't sure if it was painted on my carpet, or not.  I had to do a double-take to find out that, in fact, it was a shadow.  I was almost fooled by the shadow.  I held onto that thought thinking I could use it sometime in my writing.

            The next line of the poem says, "Another dead rock star." I read recently about a pop star who was found dead in her hotel room.  What could have been the cause of death?  Lately in the news, suicide or addiction to opiods has been determined to be the cause of death for many creative celebrities.  I asked myself:  Are they so famous that they don't think anyone can help them?  Another dead rock star....

            The line, "A tsunami of dead end thinking," is the feeling I had during my last hospital stay.  I felt a wave of apathy and sadness splashing over me.  At the time, I tried to write about it, instead it turned out to be a suicide note.  I was under the wave.  That wave is probably the same wave creative and talented people sometimes ride to escape a bump in their lives, like depression.  Many creative songs are written about being down, being in a swamp.  I wish they could know that recovery is possible.

            The second stanza, beginning with "The pain rages up the spine towards the brain," and following, is my warning to anyone who is choosing not to get help for addiction or other mental health issues, along with hope in the form of "You're not alone."

            "The "shapeless form of pain" is what I was experiencing on that day before I went back to the hospital.  That shapeless wave of pain rushed over me, and I didn't know how to react.  I was doing everything I was supposed to do, but I still felt that depressing wave sweep over me.

            The poem ends with a stanza beginning with "We cry for a release, or to create."  So much art and poetry is written by someone telling the reader about being in a hole or a swamp.  For me, with a diagnosis of schizo-affective disorder, words pop in and out of my mind.  Should I ignore them, or find a way to share.  By sharing, I am helping myself, as well as others.

Reading essays about schizophrenia has definitely helped me.  When I join in and write about my own experiences, I feel less like an outsider and more like someone with something to offer.  I contribute my words to help mental health professionals, as well as their patients.  Knowing that I am potentially making a difference in the quality of life for others, as well as myself, sparks my creativity and desire to share my thoughts and symptoms.  A beginning water skier relies on the thrust of the boat's engine to overcome the resistance of the water.  Using my words, whether in poetry or in essay form, hopefully will help the person who is just facing a mental health diagnosis, rely on the professionals around them to overcome their symptoms.

 

 

 

Pursuing Trust

Schizophrenia Bulletin, Volume 46, Issue 2, Published 28 November 2018

 

            In my opinion trust is the most important quality to have in any relationship. Whether the relationship is with a boyfriend, girlfriend, teacher or even an auto mechanic, trust should be established early on in the relationship.  For a mental health patient trusting your psychiatrist or psychologist is crucial in recovery. You don’t have to be best friends,  but you should be able to trust whoever is evaluating your progress.

            How can you build trust with your doctor?

            When I am seeing a new doctor I want to start building trust immediately.  Most of the time my psychiatrist inquires about how my medication is working for me.  He asks me if I am taking the proper dosage and if I am having any symptoms.  If I have others questions that I want to go further in depth about, I usually reserve those questions and comments for my psychologist.  She acts more like a counselor for me, and allows me to talk through any issues I might be having.  When I am having conversations with my doctors, I try not to be distracted by what's going on outside, the sound of my doctor typing on her computer, or the fact that I might be hungry.  I want to focus so I do not waste his time.  I want to be respectful of my doctor's time, knowing that he has many other veterans to see just that day alone.  Both of my doctors, my psychiatrist and my psychologist, work very closely together as a team to give me the best treatment.

            One of the qualities that has helped me to build trust with my doctors happens when I first enter the office.  Is his/her voice sound gentle or friendly enabling me to open up to them?  I can usually tell if a doctor is stressed out or having a bad day with his greeting to me as I enter the office.  For me, his voice indicates whether he has time for me, or is she just waiting for lunch, the end of her workday, or is she occupied with something else.  Eye contact helps too.  There is an old quote attributed to Paulo Coelho that says:  "The eyes are the mirror of the soul and reflect everything that seems to be hidden; and like a mirror, they also reflect the person looking into them."

            The time of the day when I meet my doctor is important too.  I am not a morning person.  I need to have coffee and some food before I can function properly.  I feel sure the same is true with my doctors.  In the mornings, I sometimes still am tired from the side effects of my medication, making me not at my best.  At the beginning of the day the doctor may seem more upbeat. If it is during the end of the day, the doctor may seem tired or even apathetic. If the patient has waited a long time to talk to the doctor, the patient may seem ignored or apathetic as well. Both doctor and patient have to build the bridge for a positive experience in recovery. Weather it is coffee or food in the belly both doctor and patient have to be upbeat and friendly.

            I don't take for granted meeting my doctor.  Honest with symptoms; do I need a change in my meds?  Have to be honest with myself so I can be honest with the doctor.  Doctors' time is valuable so I try to write down my questions, so I will not take too much time.  My doctor's voice indicates his patience with me

            What has helped me sometimes is doing my own research.  Since I have been diagnosed with  schizophrenia I have tried to so as much research on this illness as possible.  The internet has been a valuable tool in my search for answers.   My psychologist has encouraged me to learn as much as possible about myself.  Building trust means answering all questions honestly.  My doctors are there to help, and I can help them to help me by being honest.

            I accept that people do judge a book by its cover. I want to present the best possible "me" to my doctors.  Good grooming habits show respect not only for myself, but for my doctor who is spending time with me.  Having been homeless and even broke, I understand this isn’t always a possibility. Despite what I have been through I am still alive, so I want to show some pride, sit up straight and make eye contact.

             The more I  share honestly of yourself, the more my relationship with my doctors will grow, and it is also possible to see my doctor professional friends.this is reality or my “unreality.”

            Schizophrenia is like a heavyweight fight, but it will not knock me out. It might cause me to have things to ignore or beat down inside me, but I will not react to a delusion unless I have real evidence that it is true.

 

THE SICKNESS IN WRITING

Schizophrenia Bulletin, Volume 38 Issue 3, Published 11 October 2011

 

            When Hemingway spoke the words, “Writers are alone,” what did he mean? Did he mean writers are alone in their thoughts, or did he mean that in most cases writers are misunderstood? Or was this his isolationism speaking.  Was he possibly depressed?   What are the underlining factors for those writers whose work we consider great but who seemed to battle mental health concerns? 

            A writer with a mental illness like me can feel alone and misunderstood.  Worse case scenario is that the writer is not taking the proper medication.  Their writing becomes a handicap, causing them to feel as if they don’t belong or as if there is a dark cloud overhead. Medication may not get rid of the entire cloud, but perhaps make it becomes less dark.

            I’ve been writing in a journal since the seventh grade. The journaling later inspired poetry and then short stories. Writing was a release for me, and I felt it came naturally. It was my way communicating because I was born with a speech impediment. I couldn’t say “R’ sounds. I had plenty of things to say but hardly said them out loud in fear of being tormented by the other kids. In fifth grade an experience was monumental for me. That was where my speech therapist said in her words, “You will never talk like the other kids.” Forced into being an outsider I think that statement helped me prepare for schizophrenia.

            How has schizophrenia changed my writing? Without medication I would write pages and pages about things I thought were going on. I would write down the voices in my head. MY words then only made since to me. I obsessed over my writing. It was the only thing I wanted to do. I thought I was changing the world with my so called special powers. I was indeed a troubled mind. 

            I think about my own life and how my writing has changed as I have worked through my mental illness.  I was depressed, maybe even suicidal. My writing was cynical and maybe seen as dark. A short story that I wrote might have the main character die. I thought that was the best way to end a story. Now, if I have a dark thought or write something that is dark, I don’t like the feeling inside.  I take medication now, and that has changed my outlook.  Now I hate killing a character. I often write about little kids--their innocence or their playful ways.

            I definitely have a story to tell but I realize I will never be recognized as much as Hemingway and DR. Thompson. I will still write. Writing is breathing.

I often write about my theory about why I have this illness. I mentioned the speech impediment which was probably a great stressor for me as a baby boy. In my early twenties I thought I was being stalked by an ex-girlfriend. I often thought she followed me in her car, and I thought her friends spread rumors about me at my job and other places. I am told delusions do not get cured or are the hardest thing to cure. I still have that delusion. I stopped writing about it.

I was in the army, there were definitely stressors there. I was also in my early twenties. I had a bad bump to the head where I was knocked out for a second. I experienced hazing where five guys tried to duct tape me. I fought so hard two of them left to tape another guy. I fought off another two; however it took a man bigger and stronger than me to bring me down. Imagine fighting for your life and losing or having your own guys punish you for being the new guy. 

I thought the hazing split my world into two realities. There was the everyday reality and there was an under the surface reality. In the under the surface reality you would hear voices in your head and see the person in your head or so I thought. I thought in order for a person to do this they would have to look me in the eye so I did my best to wear sunglasses as much as I could, because the voices in my head and other people’s head could influence them. IN other words they could make a person do something they wouldn’t normally do.  

Hemingway was alone possibly because of post traumatic stress. He experienced war which changes everyone who experiences it. Thompson did a lot of drugs. Some would say because he thought they were fun others maybe because he was lonely. It all sounds like debilitating depression. If anything these two great writers had multi mental disorders. I personally wouldn’t change them, however. 

Ernest Hemingway and Hunter S. Thompson both were famous writers who committed suicide. If they had experienced the breakthroughs in mental health today, I wonder if they would have written some of their greatest works.  Hunter Thompson died a few years ago, and I feel sure he had enough money to afford help.   However, if he had received help earlier in his life, would he have written his famous works such as Rum Diary and Fear and Loathing in Las Vegas?

            Am I fortunate to read the great works which were written by a troubled mind or is it unfortunate?  I feel blessed to have their writing as their epitaph.  Their writing holds the key to how they might have thought even in a troubled state of mind.  But I will never be able to tell them that I have been there too.  I know how they feel.

            After the break up with the ex-girlfriend, I woke up one morning and my tail pipe was cut off. I always thought it was her. Then again I didn’t live in the best neighborhood so who knows. I also thought a publisher was stealing my words. He had a disk of mine and I pretty much told him to give it back. I had a tire iron in my hand to threaten him. I wouldn’t do something like that now, but there are days where I feel that my words are all I have in this world rather they are read by others or not.

            Many of the greats of literature, as well as the other arts seem to be plagued with mental health disabilities. As a mental health consumer I feel blessed to have read and benefited from their darkness.

 

 

Blinders for Coping with Schizophrenia

            When horses pull a carriage, sometimes they are wearing blinders over their eyes so they cannot look to the right or left. They can only look forward without any distractions coming into their view.  This is a good picture of how I approach my life in recovery from schizophrenia.  Metaphorically speaking, putting on blinders each day is a way I have learned to cope with my diagnosis of schizophrenia.

            Every month I go to a veteran’s hospital to get blood work for my medication and to get my monthly injectible. On the drive there, I am the only one in the car so if I hear a voice, I block it out because the doors are locked, windows are up, and I know I am the only one in the car.  If I see a shadowy figure appear beside me, I might look again to be sure there is no one there.  Just as a horse wearing blinders looks straight ahead to the path before him, I try not to be distracted while I am driving.

            My first stop at the hospital is the blood lab. Waiting in line I often hear other veterans saying something like,” Hurry up and wait,” meaning they hurry to get to the hospital, but then they have to wait in line. If a vet appears to be talking to me, I concentrate on looking at his lips. If his lips are closed, then I could be imagining they are talking directly to me. If their lips are moving and they are talking, and I see that their eyes are showing some interest in what I have to say, then I engage in conversation with them.   I concentrate on giving my full attention to the veteran. 

            An old delusion that I have is that I have special powers or ESP.  Sometimes I hear someone saying they are interested in my special powers, thinking they could make a lot of money by using my special powers. It seems like they are speaking to me through telepathy or making eye contact with me. Their moving lips are blurred.  I realize it is not going on. This is the unreality. I consider myself high functioning, but I still hallucinate. I still have impulses, and I still hear voices.  By examining the evidence around me, I do my best to ignore unreality. I look straight ahead concentrating on something ahead of me. 

            Stress, hunger, fatigue, and sometimes over stimulation can cause me to experience symptoms. If the voices are making things hectic in my head, I try to determine what might have triggered this symptom.  Am I stressed about something?  Have I eaten in the last few hours?  Did I get enough sleep?  Asking myself these questions helps to get me focused on reality again. When I am at the veterans hospital, I am usually tired because I have to get up so early.  After the blood lab, I usually get a cup a coffee and a muffin, and I do my best to ease into the rest of my day. With my blinders on I know I am there for my medication, and I want to make that my focus.

            Finally, after I receive my medication and talk to my doctors, I am ready to head home.  I have accomplished my task.

            At home, it is just me. Recently, some renovations have been going on in my building. I hear hammering and sometimes beating on the walls. Sometimes my apartment shakes a little. I ignore it. It has nothing to do with me.  Concentrating on what is going on around me can be comforting because I know this is not a delusion. In any given hour, I can hear doors shut, and people going up and down steps. This is real. This is happening, but it has nothing to do with me. I don't have to react to any of it.

            In the early evening, I go to kickboxing which is a release from all the annoying delusions, hallucinations, and impulses. I know that those symptoms aren’t real, but I still have to deal with them. Exercise can clear my head of all that is in the unreality. I am not at kickboxing to actually get into a ring and fight anyone.  I go for the exercise, and I concentrate on listening to the call outs from the instructor.  I wish I could tell you that I don’t experience delusions and symptoms while I am at my kickboxing class, but it is a strenuous workout which creates stress.  A car’s headlights may shine in the window of our class, and I think someone is trying to get my attention. Sometimes I think the instructor is telling me through telepathy that I can be a professional kick boxer.  I think he likes the fact that I lose myself on the bag and get into a zone where no one but the instructor can talk to me through telepathy. I try to release all of my symptoms and impulses on the bag. I still might hear voices, but they are just blurred lips and mouths, so I know it not actually going on. It helps to beat the bag. It helps to block everything out on the bag with every punch and kick. I use the symptoms I experience at kickboxing as fuel to move forward, and punch and kick my rage on the bag, like a race horse in a strenuous race focusing on what is ahead and constantly moving forward.

            This is how I deal with my schizophrenia on a daily basis. I do get tired of dealing with it, but with the right treatment plan, I do have some symptom-free days, as well. It is important not only to accept my illness but to have a release from the anger that comes with it. Yes, I have been diagnosed with a severe mental illness--schizophrenia, but I love my life. I am glad I can help others understand mental illness.  Horses need their blinders so they don’t get distracted from the assignment life has given them--so they can focus and concentrate on going forward. Every morning, I get up with the same purpose, making the most of every day I am given.  My blinders make it possible for me to cope with schizophrenia.  

 

 

 

The Difference Between My Sadness and Depression

            I have experienced sadness and depression, and I know there is a big difference between the two. Even though I live with a diagnosis of schizoaffective disorder, sometimes I feel sad, and I recently began taking medication for depression. When I experience sadness, I drink more coffee, a cruise the social network for something to inspire me, and I wish I had someone to ask, “What would you like to do on this lovely, Saturday?  The last time I experience some depression, I was experiencing some suicide ideation for which luckily, I did not have to be hospitalized. My psychiatrist, at the time put me on a low dose of an anti-depressant.

            My depression is a deep pool, and I cannot touch the bottom. I am about to sink, and I do not have a way to swim to the ladder or wall. I am surrounded by water and there is nothing or no one to rescue me. The faces of my family pictured on my office wall do not affect me. My mother’s pleas cannot break the wave of water about to swallow me whole. I must cry out for help.

            In 2013, I was hospitalized for my depression for which I had no control. I slept a lot. I could not put into words what I was feeling, however, my doctors understood. I hate being hospitalized, but that was the only way I could leave the ledge and my feet be on steady ground again. I realize now that my only way to save myself was to be hospitalized. Those doctors saved me, and I am grateful.

            The depression reminded me of a similar feeling I had in high school. My dad would say, “Jason, it seems like you have a dark cloud overhead.” I did not know how to explain how I felt. If it were not for my friends at the time, I might not have survived that troubled time. I thought life had no meaning, and life was mediocre.  Life would not pick up, nor would I reach that peak of a satisfied life. Now I wonder if I was depressed rather than just sad.

            In my early years of college, I was only motivated to work hard enough for an average grade. I was in the depths of a ditch that had no way out. The only thing I wanted to do was to drink alcohol and smoke cigarettes. I had heard of the word depression, but I thought I was just experiencing life. I thought life was hard for everyone, and I was just experiencing life like everyone else. If I could tough it out, I would get through.

            About a year or so ago I was having some suicide ideation. I saw a vision of myself holding a gun to my head. I did not think I was conspiring against myself, but these thoughts gave me some concern, even though I did not own a gun. I did not always tell my doctors about my depression or suicide ideation, but that time I chose to do so.

            My diagnosis was schizoaffective which is schizophrenia with a mood disorder, but surprisingly, this was the first time I was treated for depression. My psychiatrist wisely prescribed an anti-depressant for me. This turned out to be a huge moment for me.  As a result of being on the new anti-depressant, I now catch myself in moments of pure happiness. Despite living alone, I am not overwhelmed with loneliness.

            Sometimes I have moments of sadness that are different than my depression. Sadness can feel like tiny arrows pricking me throughout the day. Listening to music helps, and so does dancing. Yes, I dance with myself! Reading comments about the articles I have written about living day to day with schizoaffective disorder can also lift a sad moment and change it into something pleasant.  Just the act of writing makes me feel better when I have had a sad thought.

            Volunteering has been a way to distract me from sadness I might feel because I live mostly alone.   I am the Chair of the monthly veteran’s council where I receive my medical resources and enjoy the idea that I am helping to give a voice and representation to those who might be overlooked by a large system. I also volunteer for the ShareNetwork which is a national volunteer group that allows people to share their personal stories as a way of helping others overcome their difficulties brought on by mental illness and other physical ailments. This does not only just make other people feel like they are not alone, but it makes me feel like I am not alone. The people who work for the share network treat me so well. We have become good friends. It is one of the best things I could have done for others as well as myself.

            I also exercise about six times a week. Exercise is particularly important for my daily routine. It erases the dark cloud over head and even lightens the negativity I might feel with sadness. I like writing the details of the workout I did for the day on a calendar. I do this because I like to see the progression of my workouts before I turn the calendar to a new month. I recommend to everyone to stay active, even if it is just walking around the block. Exercise is the best piece of advice I can give to anyone.

            It has taken me awhile to learn that sadness is something that everyone can experience, even every day.  However, depression is something altogether different.  It is not just an emotion, but it can be attached to mental illness.  Given my situation, I must be alert to periods of sadness that can lead to depression.  I am glad my psychiatrist prescribed an anti-depressant when I needed it.  I can talk out sadness, but depression must be treated differently.

              

 

Living Inside While the Corona Virus is Outside

            The outbreak of Corona virus has rocked our world and caused all of us to isolate in ways we never dreamed of doing before.  For some of us who have a severe mental health illness diagnosis, this isolation is more than we might have ever experienced with our most extreme symptoms. While I have to fight my tendency to self-isolate as a result of my schizoaffective diagnosis, recent days have caused me to think about my routine and how it can, not only keep me safe from the virus, but enable me to have a productive life.

            While I value my routine, I have had to search for more ways to keep myself actively involved in life.  Before the outbreak and social distancing, I thought my life was full of blank spaces.  Sure...I called my parents, worked out at my fitness center, stayed up on current events, and of course, had my coffee, but even that routine has changed to fill in more of the blank spaces.

            Sleep is a vital part of my life and since my antipsychotic medications are very strong, I do not want sleep to occupy more of my life than is necessary.  My normal routine upon waking is to take my morning medication first thing before I do anything else.

            After coffee, I begin hydrating by drinking water while I change into my workout clothes. I have always tried to stay physically fit, but I have also found that physical exercise is exercise for my mind.  Yes, I care about my physical body, but I also want to strengthen my mind and stay mentally with it.  During these days, however, out of an abundance of caution, the fitness center at my apartment is closed, and the kick boxing facility where I take classes is also closed. Luckily, I have dumbbells, and hand bands in my apartment. I also have a DVD with a three month workout. Most of the workouts on this DVD last an hour to an hour and thirty minutes.  Following the instructor on the DVD, I can work out six days a week, and either stretch or rest on the seventh day. After my workout, I hydrate again with water and a vitamin water beverage. If I took away working out from my day routine, I wouldn’t know what to do with myself, physically or mentally.

            Another way I try to stay connected during this time of social isolation is to call my parents every day. I think it is important to have someone with whom to talk. Today I called my mom first, and later I called my dad. Talking to them makes me feel normal. Our conversations consist of a review of what is going on with either of us and any plans we might have upcoming. I also connect with others on social media.   I have friends all over the world who also struggle with severe mental illness, and they are reaching out for social interaction just like me.  I like to give encouragement to them if they are having a rough spot in dealing with their symptoms.

            Maintaining a healthy diet and cooking good meals is another important habit to have during a time of staying inside.  I start my day with a smoothie. A typical smoothie for me has either strawberries or blueberries in it, a cup of Greek yogurt, a cup of unsweetened almond milk, whey protein, and power greens. A smoothie fills me up until dinner.  During the day I try to eat lots of protein and a minimal amount of carbohydrates.  Dinner consist of a meat, a vegetable, and scrambled eggs. While I'm cooking or eating dinner, I usually listen to my local and national news on TV.  Staying up-to-date on current events is another important way I stay connected to the outside world.           

            Staying well groomed and taking care of my body are important parts of my daily routine  also. Showering and shaving almost every day are good for my mental health, as well as my physical health.  I used to put grooming on a daily list of things to do, just the same as maintaining my shopping list.  Now it has become a habit, and I don't have to remind myself to take care of that part of my life.  I like to spend some time every day or so cleaning my apartment.  Sometimes I do it by rooms--bathroom on one day, kitchen on another.  Keeping myself and my apartment clean  make me feel good about myself.        

            I don't have to be doing something every minute of my day.  Sometimes I just enjoy sitting quietly and listening to music.  I've always been a fan of jazz, so I enjoy listening to many of the jazz legends of past times.  When the weather is agreeable, I like to sit on the balcony of my apartment with my music playing as I watch the world go by.

            In the early evening before bedtime, I take my nightly medication.  This medication helps me to relax, and also keeps my mental health symptoms from disturbing my sleep.  Before bed, I sometimes call my parents again to say goodnight to them.

            Having a routine has been a great help to me since so many of us are now isolated from each other.  Keeping to my routine helps my days not to crawl by, and I don't spend the entire day in bed or on the internet.  Making my days productive makes me feel better about myself and my health issues. No one is for sure how long our state will be asking us to socially isolate, but I have found that practicing my regular routine adds normalcy to what could be a very disrupting time.

Being Present in My Treatment

            With my treatment I know I just can not wait to be complacent and actively involved in my treatment plan. I have to show my face and introduce myself to those who are part of my support team.

            I have been in the VA system since about 2006. During that period of time, I have seen several different psychiatrists. Every time I get a new doctor, I have to reintroduce myself. In doing so, I want to present my best self, so I want to be seen as a person who cares. I try not to be late for the appointment, and I try to be patient with them as they get to know me and my mental health history. I realize I am not the only patient they see, and in most cases, they are over worked. I take a deep breath, share my past symptoms, and present symptoms. I want them to know that I am more than just a computer screen. I am more than a number.

            I have learned that in talking to my psychiatrist it is important to get to the point. My mental health story is not an epic journey for Hollywood. So, often I jot down ahead of time what I would like to talk to my psychiatrist about…any symptoms I have been experiencing since our last visit, questions about my medication, and any other issues I feel are important to discuss. I have confidence that my doctor is trained to help me with any questions I might have.

            On occasion, my doctor might be late for a scheduled appointment. If my doctor is late, I know complaining will not get me seen quicker, and raising my voice or being irritable will not make me seen sooner. Part of my self -care is for me not to be a “scary person” or to fit someone’s untrained stereotypical view of a mental patient. With a shortage of physicians in many areas of medicine, waiting is part of the routine.

            By being “known” people will remember you. In fact, since I was in group therapy earlier in my treatment, a psychologist recommended me to get my covid vaccine. I honestly think because I was nice and polite, she remembered me that is why she stopped me the mental health waiting room.

            I go veteran’s hospital once a month. My appointments are in the morning so after I am done, I can go home and relax in my apartment. The psychiatrist, receptionist, and counselors have to spend their entire day seeing patients because that is their job. I am not saying I do not matter, but I am just 15 minutes of their day. I know they care about me, but I know they have more patients to see during the day, not just me. Because I have been going to the veterans’ hospital for so many years, many of the doctors and other healthcare professionals know me on sight. They may not know my name, but because I try to be a friendly person, they recognize me from my previous visits. They make it a point to engage me in conversation which I appreciate very much. Just recently, one of my doctors saw me in the hallway and took the time to be sure I had gotten my corona virus vaccine.

            Being present with my treatment plan mean more than just showing up. I am confident my doctors will do their part, but I also have a part to play. By working together as partners, we can be assured that I have the best chance for success in my mental health journey.

 

Filling Holes

 

 I wish I could go back and tell my younger self it does get better. Today, my words are my advocacy, and my advocacy is my legacy. There have been times in life that have made me cry, and also other times that have made me smile. I learned that holding onto the past and negativity can become a heavy burden that I am not willing to bear. I am middle -age now, and I realize I will not live forever, so I want to make a difference wherever I can.

            In my life, I have been a teacher’s aide, a dishwasher, a soldier, and now a writer. I am not wealthy, nor do I ever expect to have great wealth, but I value the experiences that have taught me lessons during my life. With all my experience, I have concluded that my purpose is to fill holes that have been left for someone else to trip over. There have been various times in life where if I did not do my best to fill these holes, then no one else will fill them. At most beaches, it is considered common courtesy if you dig a hole, you have to refill it, so beach goers will not trip in the dark, or sea turtles will not get trapped. We should fill the holes left by ourselves or left there by others so those who come after us will have a smoother path forward.

             In advocacy we are told to find our voices. I want to use the experiences I have had with my mental illness to help others. There is a hole there that I hope I am helping build a bridge over by using my writing about living with schizophrenia. Mental health professionals can only do so much. I try to help others understand by sharing my story. I like to think by doing this I can give insight that will cause others to get the help they need and will provide mental health professionals understanding of what those of us with severe mental illness are dealing with on a daily basis. When other patients thank me for sharing my experience, that is the payment that makes my advocacy worth doing. People who care about the human conditions usually do not live in the lap of luxury. I do not get a dollar value for my advocacy. The rewards are intangible, like purpose, inward peace, and gratitude.

            In my past life when I was a teacher’s aide, I was drawn to the students who were playing by themselves. I would go over to them and begin to play with them. Then I would ask, “Why are you not with the other kids?” I had a sense that there was a hole there that needed to be filled. Chances are they are just shy or lonely.

            My job as a dishwasher was an excellent job when I was a young adult. Even though it is often seen as the bottom or entry job without it the bottom would fall out of the restaurant business. A dishwasher has to make sure the cook has his plates, and the waitstaff have their silverware. Without the dishwasher, there would be a hole. The cooks and the waitstaff would have to do the dishwasher’s job at the neglect of their own jobs. The customers I find do not like to wait too long to get their dinner.  The dishwasher fills a hole that is vital to a successful restaurant.

            With love you may need to fill a hole. This is best illustrated in the first Rocky movie. In the scene Pauly, Adrianne brother and Rocky’s friend, ask Rocky what the attraction with Rocky’s newfound relationship with his sister Adrienne is.

            Rocky replies, “She got gaps, I got gaps; together we fill gaps.”

            Another way to look at it is finding the last piece of the puzzle in your life to make it complete. For whoever reads this I hope you find the piece of the puzzle that makes you feel complete. Mental health advocacy has, not only, helped me find that last piece of the puzzle for me, but it is a way for me to fill the hole that is left for those dealing with mental illness.

            If you see a hole in your life or someone else’s, do your best to fill it so someone else will not trip. Do your best to fill gaps, holes, and ditches.

In Touch with My Surroundings

            When I exercise, I like to listen to music. Like many others, I enjoy walking to the beat of music. The right song or music helps to set a rhythm to my walking. However, recently I have been walking without listening to music, so I will not be distracted and can concentrate on my surroundings. I have schizophrenia which sometimes alters my perception of what is going on around me. When I am not listening to music, I try to use my senses to recognize what is real and to experience what is really going on.

            In my neighborhood I do not see “No Trespassing,” signs. It is as if want to encourage people to walk or ride their bikes. It is nice to see kind faces sharing their day with me. Sometimes there is a nice breeze. There are always cars on the road, but it is a pedestrian friendly neighborhood, so they stop for walkers.

            The cement sidewalk is hard. As I quicken my pace, I can feel air going in and out of my lungs. I walk around the parking lot of the Veteran’s Hospital and see two snow white swans dipping their heads in the pond. I see planes taking off at the airport and wonder where they are going.

            There are bikers on the sidewalk I try not to get in their way. They say, “Good morning,” and I do the same. There is a young couple outside the bagel shop enjoying their breakfast. There is a man walking his dog, and they see me, but I do not feel threatened. I nod a hello and they acknowledge with a nod back to me.

            The cool breeze drives me to walk further. I take out my phone and check the app that counts my steps and tell me how far I have come. It has been about two miles. I walk by other restaurants and notice employees waiting for their manager to unlock the front door. I smell cigarette smoke.

            I am still walking as I notice a house painted a robin’s egg blue. Then I hear workers hammering wood on a new house that had not been painted yet. I hear Spanish being spoken. I turn the corner and walk in the opposite direction. There are women in stores shopping for clothes. The clothes are hung nicely on the wall and on a rack in the middle of the store. There is a playground, but no children are playing. It must be too early, or they are in school.

            On the front glass door of the stores there is a sign that says, “If you are vaccinated you don’t have to wear a mask.” Nevertheless, some people are wearing masks as a precaution. At least people are out to enjoy the morning. I keep going still feeling the clean air in my lungs.

            I really feeling a part of the day when I can use my senses to engage in reality. The only person who knows I have schizophrenia is me. No one feels threaten by me, and I am not threatened by them. When I listen to music, I can see things going on, but I cannot really experience life in my neighborhood as when I allow my senses to enjoy what is going on.  I feel like I am being embraced by the air in my environment. It is a terrific way to engage true reality. It is a wonderful way to start my day. I hope you will try it sometime.

 

Portraits to Remember

            Awhile back, a Picasso exbibit came to my city’s art museum. I was excited to view the exhibit because I have always admired Picasso and his influence on other visual artists. One painting by Picasso, called Celestina, was a woman with an eye that was semi closed, even dead, and some might call ‘ugly.’ Picasso painted Celestina during, what was called, his Blue Period, using drab shades of blue and an overall theme of despondency. The painting of Celestina has so much detail that one might think it a photograph upon first examination. Personally, I was draw to Christina’s eye. While the rest of Christina’s portrait was normal, her eye called out for my attention.

            I wondered how Picasso had encountered Christina. Was she familiar to the people around her community, and how did they treat her because of her deformity? Did Picasso asked her to come to his studio so he could paint her? Did he just file her image away in his mind and paint her later? What was Picasso’s motivation for painting an older woman who obviously had a facial deformity which was seen by everyone? For his own reasons, which we will never know, Picasso wanted to remember Celestina because she had some impact on his life.

            I have lived in my average-sized city for many years, but I will be moving soon to a different state. There are people that I see on a regular basis that have formed portraits in my mind that I will never forget when I am in my new location.

            There is an employee at the grocery store that I enjoy seeing when I am shopping. When I see him there working, I assume he is doing okay, he made it to work. On the few occasions when he speaks, I have to listen closely because he is very soft-spoken. Even when he is facing me, he does not make eye contact. His left arm hangs low, and it looks like it is a heavy weight he has to drag along with him. His arm was obviously damaged in an accident, or he was born with a non-functioning arm. Sometimes he works in the self-checkout. On other occasions he is working as a cashier. This tells me that he is a dedicated and trusted employee who has been given responsibility at his job. Sometimes when I am in public places, my schizophrenia is triggered, and I think people are talking about me behind my back, laughing or staring at me wondering what I am going to do next. When I pass him in the store, I am never paranoid. Long after I move, I will remember his face and mannerisms. He is a portrait in my mind of someone who without knowing it, has made a small impact on my life.

            I have to go to the veteran’s hospital once a month for medication, and to speak with my psychiatrist. When I am in the mental health waiting room, there are faces that are comforting to see. Because of the pandemic there have been fewer people in the waiting room, but there is a man who talks loudly to himself, and who does not appear to be able to sit still for long. I suspect that, like me, he is hearing voices, and thinks he has to respond. Whenever he sees me, he always says, “Hi,” and I smile back and ask how he is doing. He always answers, fine. Then he goes back to speaking to his invisible stranger. I do not know his name, but I remember his kind smile and his friendliness.

            There is also a young man and his dad who I often wonder about. I know how important it is to have support from family because of my mental health diagnosis. I am so glad this young man has his dad there with him to help him ask questions and gain confidence. This duo is usually quiet in the waiting room, but the dad lights up when he sees me, and I ask how they are doing? I can relate to the young man because there was a time when either my mom or my dad had to go with me to my mental health appointments. Both these men at the veteran’s hospital are veterans, and they are dedicated to staying on top of their diagnoses because they are waiting for their appointments. They are there to get help and direction just like me. They have given me encouragement as I see their determination to get better. They know how important support is and are willing to give it to their loved one. Their presence at the hospital shows that they have not given up and are firm in their determination to take advantage of the help that is offered to them. Their portraits in my mind will bring smiles to my life forever. Seeing them in my reality has given me comfort. Everyone has some kind of struggle, but these men are doing something about it. They are soldiering on and not surrendering. I hope they get the same kind of joy they have given me.

            These are just some of the people who I have added to my portrait gallery. They are priceless in their ability to spread enjoyment to anyone who is willing to search for their strengths. I am thankful to have them in my collection of portraits in my mind.

 

                                    Dealing with Schizophrenia in a Crowded Restaurant

 

            When I wake up early for a doctor’s appointment, I treat myself to breakfast at a local restaurant. It is a friendly place. Something I enjoy doing when I am in a public place is people watching. However, I must be careful because most people are not comfortable knowing that someone is staring at them.

            This restaurant has a TV, so I can watch sports highlights in order to tune out the voices and paranoia that come from my schizophrenia diagnosis. Watching TV allows me to tune out those around me who I feel are reading my mind. Despite the fact I might feel that way, I still try to be alert to the server who is taking my order. I want to smile and appear to be a friendly person.

            After my order is taken, I either go back to watching television or start to play with my phone. One of the positive aspects of owning a pone is that it lets me appear to be busy. I use my phone, like the television to distract myself from my symptoms. Once eating at this restaurant, I thought I heard another customer ask the server if she thought I was stalking her. I have learned while living with schizophrenia not to react to these thoughts but to find ways to distract myself.

            Being part of a group in a restaurant brings about different challenges for me. When I am in a group of people at a restaurant, I make sure there is at least one person with whom I feel comfortable which helps to ease my social anxieties. Having someone who understands my situation allows me to be myself. Often, I look around the restaurant to see if the voices I hear are in my head or coming from other tables of customers. I wonder if those seated at my table or around the restaurant can actually see my anxieties. Quietly practicing controlled breathing exercises helps to calm me down when I am in a group. I am the most comfortable when I am with family members because I know they understand my diagnosis, and they know I am not being rude, but dealing with my challenges.

            In a group of people, I do not feel I have to start up brilliant conversations. I do not have to be profound. I do not mind small talk, and despite my anxieties, human contact, even at a minimum, makes me feel good. Feeling part of the conversation makes me smile.

            If I am asked a question, I think about it and repeat the question again in my mind. I am not afraid to answer, “I don’t know,” but I try to think of a satisfying answer.

            The big issue around my belief that people are talking about me can be managed when I have to listen to real conversation that draws me in. This is real, and this is what is going on. The server might be standing in front of me asking me what I want to eat. It is hard to concentrate, but when I hear a real voice or real question, I listen, and it brings me to the reality of the moment.

            I am thankful that I have the means to occasionally eat out whether alone or with a group. I tell myself the other customers do not know me, and the people sitting at my table cannot read my thoughts. I am there for a meal and friendly conversation, and I am the one paying for my meal

 

What to say and what not to say

           

            I guess it is a kind of intelligence to know what to say and what not to say. It takes a special kind of intellect to quickly understand if a stranger will understand or not understand. I have not necessarily mastered it, but I do my best to try to understand a new acquaintance.

            I was born with a speech impediment. At a young age, I realize that some words I cannot say, because some people will not be able to understand. I figured I would be misunderstood. I was comfortable staying quiet. Luckily, I discovered writing, and quickly I learned this was the best way for me to communicate. My speech impediment was having trouble with the “r’ sound.

            I may have gotten better with my speech impediment, but I still have some trouble with some words. Two words come to mind that I have trouble with “work” and “rural.” Instead, of saying these words wrong, I try to find different words I can say that mean the same. Instead, of saying work out as in “I like to work out.” I say exercise. I can say exercise fine. My parents live in rural Virginia. Instead, of saying “rural” I say, “the country.” “My parents live in the country.”

            I realize over the years that I cannot just stay quiet. Sometimes I talk and I sound like I am from New York. One time at the Veteran’s hospital I was in the room to get my shot. I was talking with the nurse, getting to know you kind of stuff. She told me she was from upstate New York.

            I repeated, “You are from New York.” In my kind of accent.

 She said, “You must be from there too.”

            I said, “No it is a speech impediment.”

            Her face became serious, and she said, “I think you are getting smart with me.”

            I assured her I did in fact have a speech impediment.”

            With schizophrenia, you must have a similar kind of knowledge. When I meet a new acquaintance, I do my best to find out if they will understand that not only, I have schizophrenia, but also that I am managing it well.

            When it comes to meeting mental health professionals or even a nurse chances, they will be fine with me living on my own with schizophrenia. Most of the nurses I meet at the Veteran’s hospital think that schizophrenia is a condition similar too diabetes. Both illnesses need medication.  

            When I talk to my neighbors around my apartment complex, I am careful with what I disclose. When it comes to the question, “So What do you do?” I do my best to be careful with the answer. I wish I lived in a world where I do not have to walk on eggshells with the answer to “So what do you do?” I wish I lived in a world where I can answer this question with what exactly I am thinking. I wish I could answer, “I have schizophrenia that I manage with medication. I believe there is nothing to be ashamed about. I am a published writer and a mental health advocate. I live a very fulfilling life.”

            Some of that is okay like saying I am a mental health advocate and published writer. That is how I usually answer. Some people leave it at that, and others keep asking questions. Sometimes I say screw it and I answer, “I write first person accounts of my schizophrenia.” Most of the time they do not have questions after that. I guess my answer left them speechless.

            Despite that things have gotten better. I have friends a whole community that have schizophrenia. Sometimes I see their posts on social network and it just makes feel contented. I realize I am not alone. There are other people out there who deal with the same things I do. There are people out there such as my trust partners, my mom, and my dad that I say whatever is on my mind. That is powerful. That makes me feel powerful. I also hope my articles help other people like some help me.

            In this schizophrenia community, we are not competitive. We understand each other and often encourage each other. We all have our own ways in dealing with tough days. We can say whatever to each other. We are not alone.

 

My First Tele-Conference

            Recently I had my first tele-conference with my psychiatrist. I have had a diagnosis of schizoaffective disorder for several years now, and I have received excellent care from my doctors at the large VA hospital in my city. However, I recently moved to a new state which required a change to all new doctors at a new VA clinic. The new clinic is close to my apartment, but it is not a large hospital with all of the doctors on site. On my first visit to the clinic, I learned that my next appointment with my psychiatrist would take place by teleconference, and he was in a large city located about two hours away. 

            When the day arrived for my appointment, I reported to the clinic as I had always done in the past. My bloodwork had been completed, and I was prepared for the conference with my psychiatrist. I thought I would be talking to him over the telephone. My mom, who is my trust partner, was with me, and we were led into a small room with a large TV monitor on a desk with a keyboard. A technician came in and set up all the technology and told me to wait until the doctor came on the screen. I still was not sure what to expect, but I was glad I had my trust partner with me.

            Finally, a face showed up on the screen, and it was clear that face saw me. My new doctor did not really remark that he was in a box or that we were not face-to-face. I could tell that for him, this type of conference was not unusual. He did not hesitate, but we went right into our business. He introduced himself to me, and then mom and I introduced ourselves to him.

            During our initial conversation, or the “getting to know you” stage, my new doctor told me about himself. He used to do pharmaceutical research, but he missed seeing patients, so he left that job. We had an insightful conversation about his theories about schizophrenia, some of his theories about causes and symptoms, and how he came to work for the VA.  I told him how I wrote first person accounts about living day-to-day with schizophrenia and my work advocating for those with mental illness. He appeared to be extremely interested in what I do and made a note to look up some of my writing. It was reassuring when mom gave me a thumbs up under the table—she felt the conversation was going well.

            I could have talked a long time with him. He went through all the normal questions on his paperwork. I felt so comfortable with him that I told him about the hazing I had experienced in the military and about my decisions to try to live a healthier lifestyle. He told me I would be receiving my prescriptions in the mail, and we set up our next teleconference for next month.

            I came away from my first teleconference feeling like I had just met face-to-face with a brilliant, but relatable psychiatrist. He was very personable, had a good bedside manner, and seemed to really care about me as an individual. He even gave me a phone number where I could reach him in case, I had any questions. By the time the conference was over, I had almost forgotten I was looking at a screen. I am already looking forward to meeting with my psychiatrist again next month. He may be several miles away, but I believe I can trust him to give me professional care, delivered in a personable manner.

A Gift in Words

            In these isolating times of Covid coupled with national unrest, most people in our country need to be lifted through words of affirmation that we speak to each other. Add mental illness to life’s uncertainty, and it is like dousing a fire with gasoline.  My mental illness has taught me to be mindful of what some may view as the little things of life--a dash of sun in the chill of winter, a slice of pizza, or a cup of recharging coffee, or perhaps a compliment.

            Every month I must go to the Veteran’s hospital for a blood check and to get my medication. I do not necessarily look forward to the trip, because I must wake up at 7am. It is, however, nice to get out of my apartment routine and see real people. Even though I do talk to my parents daily by phone, it is reassuring to be face to face with my psychiatrist and my nurse who gives me my long acting injectable. I look forward to the interaction I have with them.

            During my appointment with my psychiatrist, I mentioned how annoying it is to experience waves of delusions that fill up my mind.  I felt relief when she did not increase my medication. Her words reminded me that, despite my obstacles, I am doing the best I can.

            While I was waiting for my injectable, I noticed another veteran who was also waiting to see the nurse.  This person was wearing a very extravagant hat that looked like an explosion of color.  Not a hat one would usually see at the Veterans’ hospital. When it was my turn for a shot, I casually asked the nurse if she sometimes felt depressed by being around unusual people all day.

            She thought about it, and answered, “I see mental health as any other condition.”

            She went on to say, “I use to work with in-patients, and they are like any other patient with an illness.”

            My heart sprung up as her words lifted me. I felt happy to hear a nurse explain her opinion which is exactly what ignites my advocacy. That was something I agree with, but occasionally forget. Mental health consumers need this constant reminder--Our mental illness is the same as a physical illness.

            “I told her she was a saint and thanked her for her service.” I hoped my appreciation of her comment would encourage her to keep going forward during this typical Tuesday.  

            On my way out of the hospital, I stopped by the restroom where I saw a janitor who was mopping the floor. Not wanting to walk on his wet floor, I asked,

            “Are you cleaning?”  

            He answered, “Go ahead.”

            As I was leaving the restroom, I thanked the janitor for his service, hoping he would know how much I appreciated his contribution to keeping our hospital clean.  I could not imagine his job cleaning up after others during a pandemic.  He was probably also a veteran who had served his country.

             That Tuesday visit to the Veterans’ hospital was certainly worth waking up early. For me I acknowledge the little things that shine a light into the cave of negativity, no matter how small. There is no cure for my schizophrenia, but I will win daily no matter how small the battles are. I acknowledge the little details that keep my heart beating. Our nation is strong, we need each other to get through difficult times. We need to accept the light from strangers and shine the light on others who might need to be inspired to get through life.

Beware of Triggers

Recently I was watching the movie, A Few Good Men, which was a favorite of mine, even before I joined the army. It has good acting and a good twist and turn storyline. The plot of the movie centers around the trial of two marines who participated in a hazing incident in which they were ordered to put a tainted rag down a weaker marine’s throat and then to tape his mouth shut. As I watched an actor describing in full detail what had happened, in my mind, I was transported back to a night in the desert when I was in the army, and I had a similar experience.

            I try not to dwell on this traumatic event in my life, but as I watched the movie, I relived my horrible experience from the Mojave Desert. I quickly turned off the television, but the thoughts of my own encounter came roaring back, and I found myself experiencing the incident all over again.

            Even when my trauma first happened,  it was so profound, I did not know how to manage it. Being taped was the last thing I thought I would go through in my army experience. What came next was racing thoughts and a mountain of anxiety. I felt the tight restraint of duct tape being wrapped around my body until I was lying on the ground unable to move in any direction to defend myself against my fellow soldiers. The duct tape was strapped across my mouth, and I was having difficulty breathing. I remember thinking how could this be happening to me. I was sure I was experiencing the last moments of my life. My parents flashed across my mind—would they ever know the truth about what had happened to me in this desolate, lonely place?

            I now know that seeing the hazing incident in a movie brought about a PTSD flashback to my present life, not from combat, but from reliving a very traumatic incident in my own life. I looked down at the bracelet on my left wrist. It had the phone number of the veteran’s crisis line. Maybe?

            I also remembered that I had planned and prepared for a situation such as the one I was experiencing at the moment. Because of my diagnosis of schizoaffective disorder, I had a routine I could follow on stressful days. On days like the one I was going through; I knew that keeping to my routine was crucial. With the past weighing heavy on my entire body, the part of the body that was taped, I still had to move forward for the rest of the day. My daily routine was the only way I could move on.

            I began by having coffee while listening to uplifting music. I brushed my teeth. Those two small steps made me proud that I had at least begun my daily routine. However, I still had the rest of the day to get through. In “survival mode,” all I had was my routine.          

             I had not had an episode like this in months. Next, I called my mom, which was also a part of my daily routine. She had always been my go-to for advice and counseling. When I deal with anxiety and my symptoms of schizophrenia, I wonder what I would do if I did not have my parents who are my trust partners in my mental health journey.

            My mom gave me what I call, sensory therapy. In sensory therapy, she asked me to use my senses to tell her what was going on around me.

            My mom asked, “What do you see?”

            “My neighbor in his convertible driving in the parking lot.” I answered.

            I went on to say, “I see a breeze blowing the palm trees. I love that I live in a place where there are palm trees.”

            She asked me to close my eyes and tell her what I could hear…. a dog barking, traffic out on the highway, seagulls squawking…. By doing this, I felt enlightened and in touch with what is real and what is going on around me. Her voice made me feel safe, and I knew I was not bak in the desert.

            I told mom I was looking forward to my exercise for the day, because it would start to get rid of this heavy and full body anxiety. She told me to call her after my exercise just to check in.

            Exercise is a regular part of my daily routine. I do it six times a week. Without exercise racing thoughts and anxiety would fester inside my mind. Exercise not only burns off my calories but also burns away excessive thinking and worrying.

            Watching an intense movie became a trigger for me, even though I consider myself to be in recovery. I learned again that a routine is crucial to distract myself from thinking I have no control. In the end I had my action plan which is my routine, my selfcare, and my trust partner. All of which are imperative for a successful mental health journey.

 

AVENUES OF SUPPORT

            A person suffering from schizophrenia needs emotional support--a counselor, a doctor, or even a friend or family member who has done some research on this brain disorder.  The conclusion reached after talking to this trusted person may always be the same--I hear, see, and sometimes, even smell, things that are not happening.  These symptoms occur because I have schizophrenia.  Even though I take my medication and try to reduce the stressors in my life, I will still sometimes experience the symptoms.  The difference is in my response to those symptoms.  I don't have to react to them because they are not actually going on in my reality. Sometimes my symptoms feel like a boiling pot that is about to boil over.  In real life, I can turn down the heat, so the water doesn't boil over.

            Recently I decided to go to my favorite hamburger place for dinner. This is a place that I go to about once a week.  I gave my order and waited for the number on my receipt to be called. Sometimes while waiting, I am in tune with the conversation circulating around other customers. I can hear numbers being called out, and I can hear the employees calling out the orders.  In this particular instance I thought I overheard one person say, "My dad said that if I prove this exists, then I could become famous."  This is typical of what I might hear in a public place.  If I make eye contact with this person, then they can read my mind; I can read their minds; and we can speak through telepathy.  If someone has a very intense look on his face, I call that "hawk eyes."  And if I make eye contact with this person, then I know we are on the same wavelength.

            Another example occurred recently when I thought I could hear the voice of my Section Sergeant from when I was in the Army.  He was telling my neighbors that I was a loser because I didn't go to Iraq and because I was discharged from the Army before my contract was up.  I decided to examine the evidence.  I stood on my balcony that overlooks the parking lot and saw no one that fit my sergeant's description.  Then I opened my front door, and there was no one there.  I was still not convinced that the voice I was hearing was not present.  I decided to call my mom.  She said, "Oh, he is long gone from your life.  He has more important things to think about."  The last time I saw this particular sergeant was 2004....Mom was right.

            When I remember that section sergeant, I remember his standing over me while I was being duct-taped by the other soldiers.  He did nothing to help them.  I assumed that he had ordered the taping or hazing.  That fearful experience still haunts me, and plays into my thoughts almost every day.  I cope with those thoughts by:  having someone that I trust to talk to; by checking the evidence; by doing a double take--look, then look again, to be sure it's not going on-do I see lips moving; and by decreasing the stressors--eat, sleep, exercise. 

            I have some peculiar symptoms in my life because I have a diagnosis of schizo-affective disorder.  I am learning to deal with these symptoms, but I am not alone.  Not only my fellow mental health consumers, but my doctors, and especially my parents, have a very important role to play in my day to day struggle.

 

Surviving the Voices

Schizophrenia Bulletin, Volume 44, Issue 4, July 2018, Page 706

           

            Most people living with schizophrenia have a grandiose voice or voices which feed their delusions--mixing some parts of reality and some parts of fantasy.  When a patient becomes stable he/she learns to check the evidence in determining whether or not the delusion is real.  It is like checking for rainbows after a storm, or finally seeing light in a dark place. The grandiose voice comes from that mixture of a person's genetics and life experiences.

             For an example one might have a grandiose idea that he is a boxer. Maybe from watching Rocky movies or highlights of Mohammad Ali fights. These experiences might lead the person with untreated schizophrenia to believe he is a boxer. This grandiose idea, not based in reality, could have a disastrous ending. When my own schizophrenia wasn’t treated, I had this same grandiose idea which put me on the losing end of a fight with a golden gloves champion.  I was not on my medication, and actually thought I was a trained boxer.  Once treated with the proper medication, it becomes easier to distinguish between such extreme ideas.

            Another voice which I hear is more like commentary of what I am doing. Kind of like in the special features explanation on a DVD or watching a sporting event on TV.   For example, I might be in my bathroom brushing my teeth, and then I  hear, “He is brushing his teeth. Then he spits.”  The voices is a running commentary of everyday activities that I might be doing.  This voice is heard like a conversation in front of me, only I am alone.  I push through, or listen to the beat of a song to ignore it.

            Sometimes I hear voices at night before I go to bed.  This voice might be telling me that there is someone outside my front door, or there is someone messing with my car in the parking lot.  When this happens I have learned to check the evidence to reassure myself by looking through my front door’s peep hole, or even opening my front door to find nothing and no one is there.  I have a balcony that overlooks the parking lot, so I can look out to be sure my car is okay.

            Some people with schizophrenia isolate themselves or become reclusive. I have to work at not doing this.  I always try to greet my neighbors when I see them walking in the parking lot. A simple, “How are you?” can help me realize that the voice telling me that they are talking about me, may just be a voice in my head, and not real.  I want my neighbors to see me as a nice, friendly guy.   I'm learning to check the evidence when the voices are telling me something negative. 

            Even though I take my medication regularly, I still hear some voices.  The difference is most of the time I can manage them.  I can get engaged in something else to block them out such as going for a walk.  I have also learned that if the voices are getting really negative, I can call someone in my support system, perhaps my parents, and talk to them about what the voices are saying.  My parents can also help me think through the lack of evidence.

            I don't know if a person with schizophrenia can ever be totally free of voices, but it is possible to survive the voices and lead a much more normal life, even with them playing in the background of your life.

 

 

What is Triggering my Stress?

Schizophrenia Bulletin, sba009, published February 2022

            There are times when I know that stress in my life is triggering my schizoaffective symptoms. I have to do an evaluation to determine what is causing that stress. It could be just underneath the surface, and I have difficulty putting into words what is causing the stress. Often the best way to find what is stressing me out, what it is just underneath the surface, is talking to a close friend, family member, or doctor. I am constantly reminded; I cannot do this alone. I need support to get through these anxious times.

            Recently I have a major life even coming up in my life. I am moving to South Carolina to be close to my family. I will be living close to the beach in an area with which I am familiar. I will be closer to my parents who are an important part of my support team. I thought I was managing the move well. I am usually in the mindset that I will deal with the situation when I come to it; however, I realized that the thoughts of this big step had me in knots that were just below the surface of my life.

             My new apartment will be in a neighborhood of grocery stores, restaurants, and a movie theatre. A nice hot meal will be blocks away. My new location will be very convenient to all the places I need, including the Veteran’s Hospital which is only a block away from my new apartment.

            In the weeks leading up to this move, I realized that I had fallen into the hole known as depression. I tried distracting myself with music, movies, and exercise. I was awakened by demonic voices which freaked me out even though I knew that could be a part of my schizophrenia. I managed to go back to sleep yet I woke up again hours later. Trying to distract myself from the paranoia, I listened to my book on tape and made coffee. I also listened to a church service online.

            The last thing I wanted to do was to sit in a dark apartment, with the shades drawn doing my best to deal with these delusions, so I went to breakfast not knowing what was causing my stress, and not understanding why I was experiencing symptoms of schizophrenia. What was the trigger? How could it be stress when I am eating breakfast at my favorite place, and I was moving into the perfect new apartment in a city that I loved?

            In the restaurant, I heard insulting voices coming from my brain. I pretended to people watch, but not really. Instead, I was trying to figure out if the voices were real or in my head. The server was polite, each of the other customers were at the table talking to friends or loved ones. I ate my breakfast, paid, and decided to get my car washed.

            During my drive to the carwash, I was paranoid that I was being followed. I ignored the feeling the best I could, thinking that I was not doing anything wrong or illegal. That is another thing I learned about my schizophrenia. Be good, behave appropriately, and you will have no reason to be paranoid.

            When I was in the carwash the steering wheel seemed to be rocking back and forth, left, and right. I did not know if the motion was really happening, or just in my head. I started vacuuming my car thinking that the other customers were staring at me because I was doing something weird. Because this has happened before, I knew it was a part of my schizophrenia.

            I went back to my apartment and decided to call my parents. I left a voice mail, and then dad immediately called me back. I do not care how capable I am; I cannot figure out my symptoms alone. Eventually I need to explain them to someone who can help me clarify what is going on. I told dad about my schizophrenia symptoms, especially the demonic voices which was a first-time occurrence.

            Dad and I kept talking. He asked me questions that helped him to understand what I was going through. I did my best to answer. During the forty-minute conversation, something clicked… I realized there were still aspects of the move that were unfamiliar, creating an uncertainty I had not experienced before. I was reminded that I do not have the power to predict the future. My new apartment was in the perfect place, but all the questions were causing me to be stressed out. Will the new VA have my medication? Will I be able to drive short distances when I am there? Would my new doctor and I be able to communicate effectively? These questions, and others, were the origin of the stress I was feeling. The stress was creating the delusions and demonic voices. Just pinpointing the trigger made me feel so much better. Everyone can be affected by stress, even those who do not have a mental health diagnosis, and a major move can be a life-changing event for anyone. Dad and I prayed together, and then I went away from the conversation feeling much better. I knew I was not alone in making the move, and I would have help along the way whenever I had a question. I felt like I could manage the rest of the day.

 I will begin a new routine when I get to my new location. My present life of doing my part in taking care of my mental health had become so easy. I was familiar with my current Veteran’s Hospital and its set up. I had gone there since 2006, and I often found myself giving directions to someone who was new there. With the move I will be the new one again. I will have to ask for directions, and there would be new procedures to learn. I look forward to the time when I will be in my new apartment with all my questions answered, but I know that experiencing uncertainty is something we all go through whether or not we have a mental illness. This is another of the times when I am so glad, I have an excellent support team to help me. Through this experience of moving, I am learning that stress is not necessarily caused by terrible things happening in my life. The stress that triggers my schizoaffective symptoms can come even when I am looking forward to something new. Sometimes the schizophrenic challenge for me is day to day, hour to hour, or even minute to minute.

 

Sticks and Stones

            Do you remember the old saying heard on the playground, “Sticks and stones might break my bones, but words can never hurt me?” People often throw around words like “crazy” or “psychotic” to describe those with a mental health diagnosis. The word “psychotic” is not necessarily a stigmatizing word, but people sometimes use it as an insult. Most of the insults I have experienced are inside my head when my paranoia or delusions take over. Self-stigmatizing can also be a product of our experiences.

            I experienced hazing in the military. If it were not for that event, it would likely have been some other traumatic event to bring out my schizophrenia. Yes, I said it: I have schizophrenia, specifically schizoaffective disorder. An urgent call by my parents to the police made me realize I needed help. Those events, as horrible as they were for everyone involved, helped me reach recovery today. I do not reject my past, but I have learned to accept my past and move on without shame. For me, medication, a doctor that I trust, and a good support system has helped me to move on, but I will never forget what those first years into my treatment plan were like. Time helps too. As time has gone on, I realize I have become a mental health advocate, and not a mental patient anymore.

            How I use my words has become very important to me now.  I use words to help educate people about my mental illness, about my schizophrenia. Honestly, I can be hesitant about sharing my story with other people, but I have had help from various sources. My parents have been a tremendous source of help me. The doctors and other veterans at the veteran’s hospital have given me emotional, as well as physical help. I have found purpose in sharing my mental health journey and with the online organization called Students with Psychosis. Even though we each have our own advocacy going on, we do not compete with one another, and I am motivated by seeing what everybody else is doing in their advocacy efforts.

            I mention that time helped me to move on and developing a regular routine has helped me get to a place where my words can make a difference. I set a clock for 10am, but usually I wake up before it goes off and listen to a book on tape. I eat breakfast. Eating healthy has become important to me, and I enjoy planning and preparing my own meals. Twice weekly, I listen to a church service online, and I daily listen to music. Seeing what my schizophrenia community is doing on social media pushes me to be active.  Exercise is crucial for my mental health, and I have realized that regular workouts make a difference in my mental health journey. Often, I spend time writing, and every day I call my parents, because it is important to me to have some social contact every day. There are days when I do not feel motivated or even a little depressed. Sometimes just sitting on my balcony and breathing the fresh air helps me to clear my head and enjoy my quiet times of reflection.

            Although it was life-altering, being diagnosed with schizophrenia was not the end of my life. I was diagnosed in 2004 and I am in recovery. It might have taken some time, but I am satisfied. Sticks and stones may break my bones, but words will never hurt me because I am valuable, and I have purpose.

 

My Schizophrenia checklist

Schizophrenia Bulletin, sbac207

19 January 2023

 

            One important milestone in my schizophrenia recovery story happened when I was staying in a homeless respite. I had been hospitalized, and this was the next step to my beginning to live on my own again. I was beginning to feel clearer, and the medication I had been prescribed started to take hold. Gradually my symptoms started to subside. I accepted that I did, in fact, have schizophrenia and all the doctors I had talked to were right. I understood schizophrenia was a severe mental illness, and its symptoms of delusions and hearing voices might not ever fully go away. I wanted to understand the general symptoms of my brain disease. I began to make a checklist of my symptoms that I took to my therapy sessions with my psychiatrist. I could sometimes be forgetful, so writing down the different challenges I experience in between appointments helped me tell my doctor exactly what was going on in my everyday life with schizophrenia. I described the voices that were constantly running through my mind.

            “They are like ‘he is watching tv,’ or ‘he’s getting his mail.’

            I could see that my therapist understood perfectly.

            “That is commentary.”

            My delusions, hallucinations, and voices were spread out on the table, but I had no idea of the specifics. I thought the voices just blew around in my head like a twister. It was a good therapy session and I walked back to my car smiling. I knew now that if I hear voices saying what I am doing it is commentary and a part of my schizophrenia. It was like a checklist, and I understood myself a little bit better.

            Through my own research, I learned there was a name for one of my other symptoms, and it was called ‘thought broadcasting.’ I was astounded at how this symptom related to me. I remembered my time in the Mojave Desert where I was stationed in the Army. I thought my special power happened when my fellow soldiers or others made eye contact with me. Making eye contact allowed us to communicate with our minds, and they could be a part of my thoughts. I thought they could see and feel my thoughts. I learned there was a name for this symptom. This was “thought broadcasting.”

            Now when I experience thought broadcasting in a public place like a restaurant or grocery store, I am positive this symptom is not really going on. I do my best to ignore these thoughts. When an actual specific symptom is brought to my attention, I add it to my schizophrenia checklist in my mind.

            Another symptom I was experiencing in the Mojave Desert, and the early stages of schizophrenia was thinking women instantly fell in love with me when we made eye contact. I could feel a warmness in my chest, and I thought it was their heart. I thought women would follow me to look in my eyes to see if I had fallen in love with them too. This was another sign of severe mental illness to add to my checklist.

            Sometimes when I look out into the parking lot of my apartment, I might see a car I do not recognize. Are they there for me? In the moment it is real, and they are stalking me. The car is there parked. “What do they want?” Do they want me to come out and talk to them?” I have to work hard to distract myself, so I do not react to these delusions of paranoia. I usually go back to watching television. I try to distract myself and block it out. This is a delusion that is also on my checklist of symptoms.

            So why do I experience these symptoms? I experience these symptoms because I have schizophrenia which is a brain disease. There are recognizable symptoms of this severe mental illness that form a checklist to use in determining what is real or unreal. Sometimes I mentally check my symptoms off my schizophrenia checklist. Sometimes it may be the next day before I realize that something I felt happened was really just one of my symptoms. Schizophrenia can alter my perception of what is going on around me, but my prescribed medication helps me manage those symptoms. It does, however, help me to know that learning about the symptoms of my illness, whether through my own research or talking to my psychiatrist, gives me a more complete understanding of what is going on around me. I will always have my diagnosis, but I am now in a place of recovery where I can manage my checklist of symptoms.

 

What do the Voices Say?

            A question often asked to me because I am living with schizophrenia is, what do the voices say? I probably hear different voices than other people living with schizophrenia. I am never going to understand them or know where exactly they come from, but I do my best to ignore them.

            Sometimes it seems like the voices are trying to make me forget my routine. One voice I hear seems action related. It tells me I have already brushed my teeth when I know I have not. Brushing my teeth and making my bed up are  part of the daily routine I like to follow.

            There is another voice that makes me forget what I want to get at the grocery store. I could only want three things and some how I would forget something. The best way to combat this is to make a list of things you need. I have an ongoing list on my phone. Without my list I wouldn’t have a guard rail. I would be over stimulated at the grocery store and forget what I had come for.

            Sometimes I hear critical voices after I post something on social network. Now that I think about it, I don’t post some things because I don’t like the response from the voices in my head. As much as, I would like to think I have a handle on my schizophrenia there are times I am still affected by my symptoms.

            Sometimes I share on social media an article I have written. The different minds inside my schizophrenic brain make me feel either rejection or complimented. It has gotten to the point where I feel the opposite. If I feel complimented, I figure it isn’t good. If I feel rejection, then I feel it is okay to post. The emotions in my schizophrenic mind aren’t an accurate response to what I write. I rarely hear complimentary voices, so I know the voices are not an accurate source of what is actually going on.

            I often want to isolate myself, because of the voices inside my head. I am sometimes afraid that the people outside my head know I am hearing voices by the expression in my eyes and on my face. Sometimes it is difficult for me to be neighborly, but I still try. I try to greet my neighbors. The conversation might extend to the weather for the day but won’t get much deeper than that. After that we go our separate ways. There was a time that I thought if someone was being nice to me then my voice would be angry and distract them and make it hectic in their minds so they would not want to talk to me. Sometimes the only longer conversations I have are from the voices inside my head.

At the beginning of my illness, I thought I was a genius. I started hearing voices even before I was diagnosed with schizoaffective disorder. Now I know the voices are not talking to me, but I still get swept up. Some of my voices think I am profound.  The voices buzz around me like bumble bees, but I realize I cannot just sit in my recliner and get swept up by my symptoms. It is important for me to have a daily routine and have ways to block my symptoms of schizophrenia by using music, tv, and exercise. I also started volunteering at Good Will which is only a block away from my apartment.

            At Good Will I hang up secondhand clothes. This is enough stimulation to block out my symptoms. They play music and the other employees are friendly. That helps too.

            Voices are part of schizophrenia. I hear voices because I have schizophrenia, and this will most likely be the case forever. However, I can manage my symptoms and voices with medication, a daily routine, and staying active. Whenever I begin hearing voices, that’s my cue to get engaged in another activity. I have also learned that the voices I hear are not reliable, and I do not have to react to what they are saying to me. . I might have started hearing voices in the mid 2000’s. Now I know the voices are not talking to me, but I still get swept up.

 

 

 

Understanding My Personal Schizophrenia

            Twenty years have passed since I started recovery from my schizophrenia. Those years have taught me many lessons about my diagnosis, and my purpose in life now is to use those learned lessons to help others who have recently been diagnosed. One of the important lessons I have learned over the years is that everyone’s mental health journey is different. We all may have the same symptoms, but those symptoms may vary widely depending on the person.

The right treatment plan has helped me to manage my symptoms, even though my medication does not take away my diagnosis of schizoaffective disorder bipolar type. My brain disease is incurable, but it is not an excuse for me to be irresponsible or to give up on life.

            One of my medications causes weight gain. One of the ways I combat that side effect is through intermittent fasting. I have talked to my doctors about fasting and together, we worked out a plan for the hours when I will eat and when I will fast. I have to be mindful and stop eating around 4pm or 4:30pm. I know that a little bit of time makes a difference in my situation. However, my fasting can be a trigger for my symptoms if I extend the fasting hours too much. It has been important for me to plan my day around when I will eat.  In my experience, if I begin to feel some paranoia like someone outside talking negatively about me to my neighbor, or someone listening in on a phone conversation I am having with my parents, I know that I may have fasted too long, and my hunger is triggering my schizophrenia symptoms.

            Another stressor for me is waiting for my medication to arrive every four weeks. Since I need to do blood labs for this medication. I usually do them on a Wednesday and then get my medication overnighted on Friday. When I do not get it on Friday that definitely causes stressors, and I began to get delusions about the delivery driver. It feels like bullies from my past have talked to the delivery driver and he has given my medication to them, and they will never give me my medication. I never actually see these bullies, but I hear their voices. Not getting my renewed prescription every month before I run out is a major trigger for my schizophrenia. I try to relieve these symptoms by distracting myself with exercise, watching movies, or listening to books on tape. I have also worked out a plan with my psychiatrist to get my medications a week before I am due to run out. That has relieved a huge stressor that I had been experiencing every month.

            The voices I hear are usually recognizable from my past. I conclude: Why would past bullies still have a problem with me? It has been twenty years since I last interacted with them. Have they not gone on with their lives? I can talk through these racing thoughts, but they still happen.  I try to distract myself from them. The next day I can usually explain what happened with my symptoms. I can understand my schizophrenia, but I still deal with the same delusions I had since my twenties.

            It had taken some time to be able to understand my symptoms. I can be on time for my appointments, take my meds and take away my triggers as much as possible, but I still experience the same darn symptoms!

When someone asks me what works for me, I answer: accepting my illness, being patient with myself, taking the right medication, and having things to help me distract myself from my personal schizophrenia. All this takes time. When I began taking my meds and they began working, I not only could accept my illness, but I realized what was going on in my brain was in fact schizophrenia. I still did not understand where all those excessive thoughts came from… that takes time. too. Mindfulness is a valuable tool to use to realize what is real and what is not… to just stop and figure things out. Sometimes I can, and sometimes I cannot, but I give myself time to figure out what is going on—what is real and what is not real.

I have spent many years learning to recognize my symptoms and figuring out what some of my triggers might be. It is hard work to constantly assess what could be triggering symptoms, but in the end, it is empowering to know I do have some control over my mental health journey. Asking myself questions about what I am experiencing helps me to live in reality. I have now been diagnosed with a severed mental illness for a longer period of time than before I was diagnosed. I try to be in a constant learning mode about my illness so I can evaluate what is going on in my life. My writing, speaking, and volunteer work is an outlet for me to add purpose to my life that helps others.