My Side of Madness Matti Salminen 
 
¶29 Being Healthy I have always been active and lean. The heaviest I’ve ever been was on the tail end of my stay at the Brattleboro Retreat. Then, at 6’1” tall, and 193lbs I was only a few pounds overweight. This was for me however, a gross change from my usual self. In December of 2011, I was released from the Retreat. I began exercising more, but not quite as much as I had in times past. I was still an emotional wreck, and needed time to regain my determination and focus. In the spring of 2012, I set a goal to lose some weight. That morning I weighed in at 189lbs and thought I still could lose another four pounds. My goal was set to get down to 185lbs in two weeks. I went to work. When I began trying to be healthier and loose some weight, I was living in a group home. This home served salads at every lunch and dinner. I made full use of this, making the vegetable portion of my meals the largest. The meat portion became a small compliment to the remainder of what I had on my plate. I stuck to my plan of eating lots of vegetables, little meat, and vigorous exercise. In two weeks I met my goal, I weighed in at 185 lbs. However, I still smoked cigarettes. Smoking never kept me from doing much physically. I once did a 230 mile bike ride in three days, and smoked a pack a day while I was at it. Still, in the spring of 2012, I decided to get myself right. I had been in recovery for five years, and I needed to be well. I needed to move on with my life. So in addition to losing weight, I also gave up cigarettes. I realized that smoking at that time would mean that I would have to live my life homeless. I had tried to quit before and failed. This time was different. Having quit cigarettes, I began jogging. What began as a short term wellness goal of losing four pounds turned into a full tilt health kick. In addition to jogging I trained with kettlebells. With all the exercise and dieting I was doing, I managed to lose an additional ten pounds. When I got to a weight of 175 lbs, I was fast and strong. I looked and felt great. Not only was my physical health better, my emotional well being improved as well. While losing weight, exercising and eating right, my mind healed as well. My symptoms of schizophrenia became far less pronounced. I was no longer delusional and I was no longer paranoid. So now I’m learning as much as I can about my condition. I feel a responsibility to share what I know in this column. In my studies I’ve come across a science know as orthomolecular psychiatry. Most notably it was championed, and named, by Linus Pauling. The idea is that mega doses of vitamins can be given to the mentally ill to help them with their illness. Some believe that naturally occurring substances can have a similar effect as anti-psychotic medications. Long ago, doctors prescribed mega doses of niacin for schizophrenia. However, the American Psychiatric Association rejected this practice as unsound medicine. In more recent years, doctors have begun prescribing fish oil supplements to assist the work done by medications. It begs the question in my eyes, how much was my “health kick” responsible for my recovery? Is it possible that eating right can alter chemical imbalances that would reinforce the effects of prescribed medications? Clearly I must remain healthy to be my best. I am beginning to see now why this is so. Not only does exercise alleviate stress, and being healthy promote feeling well. Our body chemistry can dramatically alter our brain’s functioning. And it is then possible that nutritional supplements could influence outcomes of recovery from a mental disorder. Perhaps an old science, seen as quackery once, will have a second coming in the 21st century. References: FoodfortheBrain.org, Wikipedia and Nami.org ¶28 To Learn and to Grow In the years that it has taken for my recovery and my healing, I’ve had highs and lows. There have been some things that have helped my process. And others that further hurt me. Although my disability remains, I’ve learned to manage my illness. I’ve learned that I can lead a fulfilling life. This life, like any other, will have ups and downs. But I know now I will persevere. One activity that I found helpful in my early years as a diagnosed schizophrenic was biking. I spent many hours in the years from 2008 until 2011 on my bike. I toured the Vermont countryside sometimes eight hours in a day. Riding my bike for extreme distances gave me freedom, and taught me that I had courage. With accomplishing a personal goal of riding one hundred miles in a day, I began to believe in myself. I liked what I was doing. And for a while, I believed I would make a life for myself as a bike mechanic. Schizophrenia has an unrelinquishing grip that got the best of me. In 2011, I began avoiding long bike rides instead of seeking them out. I stopped finding joy in what once fueled my existence. There were too many unresolved issues looming over my head. In 2011. I was 31 and an adult dependent. I no longer believed that I could overcome my problems. I was also very confused and sick. The feelings that I had of being a failure actually created the sickness. If I were doing better by societies standards, I would also had done better by medical standards. When you have schizophrenia, as I do, emotional unrest will manifest in psychotic symptoms. It was in 2002, that I began experiencing paranoia. This paranoia festered and grew inside me, occasionally subsiding. I would come to have a strong belief that if I didn’t kill myself or get put in jail, I would be tortured. But after I began receiving treatment, that included taking medicine and therapy, these feelings were manageable. They didn’t completely go away. I would exercise (on my bicycle) and engage in other meaningful activities, and this helped. However, my illness would have one last stand before I became healthy. In the time before my last relapse, I isolated. I would have told you that I had schizophrenia. But I honestly did not know then what that meant. I rapidly declined, thinking that people were out to harm me. To my knowledge there was nothing that could be done to alleviate this distress. It wasn’t a symptom in my eyes. Not in any way shape or form. In 2012, after I realized how sick I once was, I began writing on my recovery experience. This activity itself became another tool in my box that I now use to stay well. In the last year I’ve written nearly everyday. Sometimes I’d just write for my journal. But much of what I’ve written has been published. There were times along the way that I almost gave up writing. At those times I received encouragement that kept me going. I believe I have made good use of the adversity I have had to face in publishing my story. This is why now I’m a little sad. I feel that I’ve done my story justice in the past year. I am going to venture off in my writing, from my story. I will continue writing articles to educate my readers on the current and past challenges that come with a mental illness label. The manner I will do this in, is going to begin to be more researched. While I’ll not abandon my personal testimony, it will no longer be my focus. However, unlike in 2011, I know now how to maintain during a time of unrest. This change in my writing, will be met with resolve. I have grown much in the last two years, since my last relapse. And I have the tools to manage and stay well through virtually anything. In fact I am sure that I will continue in the next two years to learn and to grow. Not only as a writer and not only as someone who suffers from a mental illness. Instead as a person, like any other, trying to do his best. ¶27 Sugar House In September or 2007 I was smoking a cigarette in the corner of an unfinished sugar house. Only the floor was built at that time. The sugar house was located in a field in rural central Vermont. The town was Westhaven. I helped with some of the tasks in building that sugar house that day. I smoked a lot of cigarettes too. I was there in Westhaven to visit a private group home called 47 Main Street. The actual home was in Castleton, not far from Westhaven. The sugar house was, along with a garden, on the property of the group home’s owner and director. I had only a couple weeks earlier attempted suicide. I was a broken person very much in need of help. Towards the end of my visit Wim, the group home director, asked me if I’d like to make 47 Main Street my residence. I was pretty indifferent to where I lived. When you have as little hope for your life as I did at that time you don’t care about much. I wasn’t motivated to make a better life for myself. I only wanted my life and my problems to go away. So I smoked. When Wim asked me if I wanted to stay at 47 Main Street, I said I’d ask my parents. It was a private residence and would cost my folks a lot of money. I saw it as their decision. My parents were then and are now and will always be my greatest allies. They helped me to get good treatment at 47 Main Street and made sacrifices to do so. The programming in Castleton included taking a van full of residents to the director’s property every Thursday morning. On those Thursday mornings we worked on the sugar house for about an hour and a half. It wasn’t much but it got me doing something other than just sitting with my pain. Wim purchased plans for this sugar house at a fair. He was himself quite handy and so was one of his employees. The residents had prior to beginning the sugar house, built a suspension bridge. Really! There was also a volunteer carpenter that came on Thursdays to help. I pretty quickly took to helping on this project. I had some experience in carpentry. But was very much a novice. I did well with this project after just a short time. I’m physically capable and as I showed my competence and ability, I was given increasingly challenging jobs. This motivated me to continue to work, not only on the sugar house but on my recovery. I slowly began to believe I could be healthy and strong. We finished the sugar house during my stay at 47 Main Street. It was operational the spring that I was discharged. I can remember cold spring mornings trudging through snow to collect sap. I remember drinking sap tea. These are good memories that I have of a terrible experience that is of being schizophrenic. I’ve had some resentment to the fact that some of what I have had to deal with was not resolved at 47 Main Street. I would eventually get worse before I was able to become healthy and capable of living a life I wanted. Schizophrenia has no easy answers. For the most part my stay at 47 Main Street was helpful and it supported my recovery. In the end I have come to a place that I can look back on my experiences of first coping with and then recovering from schizophrenia. I’ve had to find for myself what I needed to manage a life affected by my disease. It wasn’t in exercising as I was told it might be; but that is now a tool in my toolbox. It wasn’t being able to live on my own. But that helps too. I had to see my own importance and know that I was fighting a battle for more than just having a life that I was proud of. At times in my journey I couldn’t have cared if I would be proud of myself. It was doing things like working on a sugar house that helped me to get through those times. No matter how many wrongs there were on the way to my recovery there were still enough rights for me to be here today. ¶26 Hospital You wouldn’t want to find yourself in a mental hospital. Or group home for that matter. These types of institutions often restrict you in some way shape or form. The former of the two, hospitals, are there primarily to confine patients. This confinement is an effective, short term strategy to keep people safe. It is my intention to call into question with this article, the use of confinement, as it is counterproductive to healing and recovery. I am not going to renounce these hospitals. I understand, and from my own experience, that these places do what they are intended to, moderately well. I hope to show that systems of treatment involving hospitalization must be improved. My first hospitalization was in 2007. I had just attempted suicide. I needed a place that I could be safe in this instance. That was a hospital. However, finding myself in a confining environment elicited a fight of flight response. Only naturally, people do one of two things when they find themselves in a confining space. They either lash out against those around them or they try to escape. For me escaping was not a literal escape. It was instead a strategy for survival in which I expedited my own release by flying under the radar. As a result of flying under the radar, I got one of two things, which was my freedom. What I didn’t get was resolution. I attempted suicide again almost immediately after I was released from the Fletcher Allen Hospital in Burlington. It is a fact that people are very much at risk of suicide immediately a hospital discharge. I think this fact reinforces my fight or flight hypothesis. In the following four years I would periodically find myself in psychiatric hospitals. I was desperate for help upon arrival in all three subsequent hospitalizations. Yet, shortly after my admittance, and finding myself locked up, my attitude changed. All I wanted was to be free again. Of these three hospitalizations two were voluntary; in those two instances I went to the police to get help. In the third of the hospitalizations I was arrested and incarcerated. I was later found to not be competent to stand trial. I was as a result, hospitalized. In all three hospitalizations I left still feeling hopeless. Somewhat detached from the crisis that got me in the hospital, but hopeless. There are alternatives to hospitals. I was not informed of these choices years ago. The negligence of those treating me to not educate me of how to deal with a major mental illness was deplorable. There are short term respite homes. But I didn’t know that. If I had, I am nearly certain my recovery would have come about with less crises. I did, as I have said, spend time in group homes. These were very helpful places for me to find support. We can not simply accept that there is inherent harm done in treating mental illness. The traumatizing effects of confinement are counterproductive to health, well being and recovery. For now we have people in treatment who are a threat to themselves or others. They need to be kept from harm. However, we must also minimize the use of confinement in the treatment of mental illness. For this, as I have alluded previously, we must educate sufferer’s of mental illnesses of alternatives to hospitalization. However, the patients in hospitals must be included, and central to their own discharge plans. I know that if I had been asked if I was ready to leave the hospital in 2007, I would have said no. A suicide attempt would have been avoided. ¶26 Outcast but not broken I’ve done a lot of thinking on how I happened to become schizophrenic. I’ve taken the time to study my illness to better understand what really happened to me. I know that smoking marijuana can trigger on-set of this illness. And with that in mind I’ve asked my psychiatrist things like if smoking pot alone can cause schizophrenia. I’ve also asked if my delusions of being a great warrior could have possibly been predated by an obsession with warriors. Schizophrenia is not well understood even among doctors. With that in mind I have left my psychiatrist’s office at times with still more questions, instead of answers. Yes you can get schizophrenia from smoking pot alone, according to my doctor. That is if you have a predisposition to the illness. And yes my delusions of having been a great warrior could have been predated by a similar obsession, according to my doctor. But I’ve come to understand that neither of these was my experience. Instead my experience was that I was first put at risk to the development of schizophrenia when society told me I was something I really wasn’t. The teachings of R.D. Laing suggest that parents raise a schizophrenic person to be different than what is in their nature. But modern hypotheses do not blame parents as they once did. It is society not family that pushes one to the edge of madness, most often. I was at a young age when I was first led to believe I was a miscreant, trouble maker and underachiever. This label gets put on many young persons and does not cause schizophrenia. What it did in my case was create a behavior in me that led to chaos in my life and eventually in my mind. It sent me off into a harsh world prepared to do my worst instead of my best. And this caused in me and in my life a great deal of turmoil and undue emotional discomfort. In other words society forced me to take a path that I would later forge on my own that brought me to the edge of madness. Our society doles out a lot of ill will towards all of the men and women that it constitutes. Some of us are mislabeled. It is often that those who have labels attached, that demean them, that find something in their label to hold onto. I call this victim syndrome. This is as I experienced it, that I would not allow myself to just be a underachiever. I would instead be a great non-conformist. I began to take on my role of mischievous outcast until I was respected for it. The role I felt I filled in my world was altered by how I was treated by persons of authority as well as my peers. I naturally fit my perception of myself to how others labeled me. And with this I ventured off into a chaotic world with a mistaken perception that eventually became bloated. The rest of my story of becoming ill can be attributed to my biochemical make up and smoking pot. What happens when I smoke marijuana is that my perception of the turmoil in my life becomes magnified or accentuated. I was prior to my recovery and before I became ill very reckless. The way my mind interprets this history after smoking pot puts me at risk of harming myself or others. Smoking just one time will have an effect that will intensely alter my state of mind for hours. Thoughts that only loosely relate to my true experience will linger for days. If I were to smoke daily for an extended period of time I could completely lose touch with who I am. It is my hope that I can illuminate and educate not just lay people of the experience of schizophrenia. But I want also to work closely with doctors and policy makers that decide how mental illnesses will be treated. I have ventured too close to what I call a “point of no return” and have come back to be healthy again. And this experience has shown me that I can be a leader and advocate for the mentally ill. I’ve seen that I do not have to just lay down and be a victim to this illness. In time with a continued effort to be educated on the subject of schizophrenia it is my hope that I will bring positive change to a broken mental health system. ¶25 As we are My mother and father each called Long Island home in their childhood. All my grandparents lived on the far east end of this island when they were alive. I am now on the North Fork moving my dad's mom's stuff out of her old house. Genevieve was the last to go of my grandparents. She lived to the age of ninety four. Genevieve lived with my parents for a little while towards the end of her life. For some time I lived there too. But while my grandmother was dying I was locked up in the Brattleboro Retreat. I never saw her before she died, and I couldn't go to her funeral. A large portion of my family is here in my dad's hometown to help get his mother's home ready to be sold. My uncle Jim and his wife are here. As well are my cousin Rob, his wife Angela and his mother Donna Salminen. In addition to relatives, we have friends of the family here too. Aunts and uncles or brothers and sisters of my grandmother's neighbor's gathered together for a big lobster dinner. It was reminiscent of our old 4th of July tradition. When I was growing up, most family vacations, were spent here on the North Fork of Long Island. Christmas, Thanksgiving, and the 4th of July, we were always here. Every 4th, the families would all get together in East Marion for food and wiffle ball. But this is something I haven't taken part in in many years. In fact, the last time I was here in East Marion, was in 2006 before I was diagnosed with schizophrenia. As I said, I wasn't able to be with my grandmother at her deathbed and I wasn't there for her funeral. I was also locked up for my cousin Rob and his wife Angela's wedding. Because of my mental illness I have been absent for many of my extended family’s most intimate events. This trip has brought with it many mixed feelings. I'm very glad to be with my family. I'm glad that I'm no longer in a place that keeps me apart from those who love me. It's sad however that this is very much the end of an era. My grandmother's passing has with it ninety four years of being a part of the Salminen family. In those years she lived on a farm with seven sisters, during the great depression. She graduated from high school, at a young age. And she moved from eastern Long Island to live in New York City for a short time. She would eventually raise three boys, and teach school in Orient Point. This trip is a little somber, not only because we are selling a piece of the Salminen family history. And that this house is so closely linked with my grandmother, who we will all miss, always. It is also somber, because I am seeing first hand all that I missed for so many years. I was not well enough to be a part of my family for seven years. Between hospitalizations, group homes and jails, I've been out of the loop since 2006. There are memories, I don't have, and moments I never experienced. I am now a healthy person just as if I didn't have any debilitating mental illness. I have grown in the seven years that it took me to heal my emotional wounds. This visit to the home my dad grew up in is the beginning of something new, just as much as it is an end of something cherished. I will from this time on be closer with my family. The strength I've gained will balance out the setbacks I've experienced. This tragedy that I've been through will in the end have brought our family closer together. We have all learned from this experience, and I think my grandmother would be proud to see us as we are. ¶24 Falling Hard At a very young age I developed a bond with another boy who I would be great friends with for years. My parents took me to church every Sunday and at our church there was a family, with a son my age, that lived close by my parents house. This was the Kimball family and their son Brian would become my best friend. We were nearly inseparable. I’d either be at his house or he would be at mine most often times. I did however, still have other good friends as most children do. These other friends would also either go to church where I did or live in the same neighborhood. They might also have been friends from sports teams and school. As you might expect. I was as I am now outgoing, healthy and sociable. Over time my interests shifted and with this shift my social circles began taking on a different dynamic. At around the age of 13 or 14 this shift gained momentum. I began to venture much further off from the traditional narrow path of student athlete. And at this time a distance grew between myself and Brian. Brian was a dedicated athlete and I was a dedicated no good nik. I can remember a very specific moment that our paths diverged. It was at a jr. high soccer practice. Our coach challenged us to a contest of who could juggle a soccer ball the longest. I did the worst of anyone on the team. With that I decided I best give my attention to other pursuits. Brian juggled his soccer ball the longest of anyone on our team and was made a captain. It was right around this age that I began smoking pot which directly led to my bout with schizophrenia. But still at this age I was showing interest in social activity and was actually quite popular. However, I slipped slowly away from people I once was close friends with. And deeper into a world that would eventually swallow me whole. I find it hard to explain how exactly a person becomes ill with a disease like schizophrenia. I understand there is a chemical component to the development of this disease. A person with a certain genetic make up will be predisposed to schizophrenia. This may result in on-set from something as innocent as smoking pot all by its self. Yet there is an important component to the disease that must also be understood. Persons who become ill with schizophrenia will all experience the disease differently. Something about the person that is maybe at first slightly dysfunctional will be exacerbated. As I became a kind of a misfit for a while the disease fed off of this eccentricity or anti-social behavior. What began with innocent hijinks slowly developed into seclusion. What happens as we get older is that we put up layers of protection, we hide our ego to protect our hearts. I as a result of my illness protected my soft underbelly not by hiding it. But by brandishing it. Like some animals that protect themselves in the wild by being brightly colored, this is my experience with madness. I recognized that it hurt to be alone and instead of compensating by being social, I secluded. I did all the things that hurt me the most until I couldn’t feel pain anymore. As a young adult I grew very anti-social and this continued into my mid 20’s. I do not remember having any social interaction with anyone between the ages of 23 and 26. At the age of 26 I got put in jail and in some ways this was an improvement on the life I had been leading. And then from age 27 to 30 I lived in a group home which provided some social interaction with peers and staff. I would eventually move on from life at that group home. When I did things started off well. Eventually I withdrew again to prepare myself for a tragic life. I began at this time to also start talking to myself and losing my ability to concentrate. This was the precursor to what would be my final relapse in which I fell hard. It became obvious to me that I was ill and this inspired my recovery. Now I am healthier than I’ve been ever been as an adult. ¶23 Battles and Hardship I once was a happily married man, or at least that is what my delusional mind led me to believe. And of all the things that I was plagued by due to my illness, heart break was one of the hardest to cope with. The girl who I believed to be married to was my confidant and lover not in just this lifetime but in all my lifetimes that I once thought I had lived. Our story of romance is a tumultuous one. She was in addition to being my wife inexplicably my worst enemy. She first decided she loved me or at least wanted to have me around at the approximate age of 6. But she thought I would become rich and famous, leaving Vermont and her behind. For this reason she requested of influential people that I be oppressed. I will tell the story of our relationship referring to her as Sarah. At the approximate age of 6 or 7 I was approached by a wealthy and influential person, who I will not name. He asked me what level of oppression I chose. Not really understanding the question or what oppression really was I picked the bottom one from the sheet of paper put in front of me. That level of oppression inflicted on me was a hardship equivalent to having my thumbnail smashed with a hammer everyday. I would grow up this way not really knowing what it was like to not endure hardship. And not really knowing that I was in undue pain. When I later learned that it was Sarah that had requested that I endure this hardship, I was not angry. At the age of 17 I began making frequent trips to Burlington as I then had a driver’s licence. I was young and looking to have a beautiful girlfriend. I found that in Sarah. She was so different then the girls I grew up with. She had a tough street smart look about her and did a lot of drugs. Sarah shaved her head bald and let her blond bangs hang down over her eyes. I was totally smitten. One day I waited for her outside her house; she was just 16 but already living on her own. When she came home she took me up to her room and we made love. I did this again the next 2 days each time she’d come home and let me make love to her. I decided then to propose to her. On a sunny afternoon in Burlington, Sarah was standing outside her high school with her friends. I went to her and in front of many of her classmates got on one knee and proposed. Now, as I created this story in my mind I believed myself to be quite wealthy at this young age of 17. The ring I purchased for Sarah had a very large diamond to it. Sarah said yes, she would be my wife. At that time Sarah and I began making plans for the lives we would spend together. We decided that we were too young to be tied down to just one person and so would have an open relationship. I told Sarah then that I was a general and that I would make a lot of money. I promised to give her all the money I made and she would in turn visit me while I was spending the rest of my life in jail. Sarah wanted to help me live my dream, in her own twisted way. She knew that I wanted to be one of the greatest warriors of all time and so hatched a plan. As I said Sarah in addition to being my lover was my worst enemy. Her plan was to have Vermont be a gangland with me taking the brunt of what would be unleashed on our rural state. I believed that I had fought in 14 turf wars with the occult in all sorts of places around New England. In the process I killed 40,000 men with a knife and remained faithfully in love with Sarah. She was a handful but I loved her and was proud of having such a beautiful women as my wife. But what ended up happening after all I had done to keep her at my side truly broke my heart. I was well on my way to being the greatest warrior of all time. The aristocracy and my wife would not have this however. Upon the completion of my 8 year tour of duty in the marine corps I was dishonorably discharged from the military. And that very same day my wife, the one who I had been married to throughout all of history divorced me. I was totally heart broken. It was at the age of 22 that I began believing that I had lost the women I loved. And I believed I had been threatened that if I did not still spend the rest of my years in jail that I would be tortured. For a long time this is what I thought to be my fate. It was one of the biggest steps in my recovery when I tried to reconnect with this girl I once believed I was married to. It was when I was 30 that I tracked her down. By this time I was medicated and began believing that I might be able to get away with not spending my dying days behind bars. Sarah was by this time a single mother of 4 boys and working in fast food. We got together at a sort of carnival, she had 3 of her sons with her. I could tell by her reaction that we were never married. It was this event that brought me to a place that would allow me to one day see that I had really gone mad. But for a very long time I believed that I lost everything, including the women I loved. ¶22 Battles and Hardship My fight with schizophrenia has over the course of my adult life been very difficult. I have suffered tremendously from an array of symptoms such as isolation and confusion. I’ve been incarcerated twice because I thought jail was the only safe place for me. In the last 7 years I spent nearly 5 of them in an institution of one sort or the other. And I have been very lonely. The difficulties that have come with or accompanied my schizophrenia diagnosis have pushed me to the very edge of destruction. In more ways than one. With now countless times of wishing I were dead and a few serious attempts at suicide behind me my life is whole and meaningful again. We have as a society come a long way in how the mentally ill are treated. It wasn’t until the 1960’s that it was seen as plausible to treat people with mental illnesses in the community. In times past hospitals and asylums were used to segregate mad men and women from the rest of society. It was thought best to keep us from procreating, to keep us out of the gene pool. And the treatment at the aforementioned facilities was barbaric. Unfortunately not all the unpleasantness that has been associated with mental health treatment has been done away with. But in my experience we could be doing much worse. In the times I’ve been hospitalized I was never strapped to a bed or put in a straight jacket. Nor did I ever receive electro shock therapy. Instead I was offered art therapy and other group activities. My only complaint about psychiatric hospitals as I have viewed them is the space and time allotted outdoors. Our nations jails allow for much more freedom with their “yards” than hospitals do. In regards to actual treatment however, the only wrong I’ve seen was not from a lack of compassion but understanding. I’m referring to an understanding of what dealing with a mental illness is actually like. Or of how it feels to need to be in treatment. Unfortunately there were opportunities missed in this regard in the years and in the facilities I’ve seen on my journey to recovery. Having said all that my feeling in regards to the current status of the mental health system is maybe an odd one. It likely will seem especially odd to anyone who has not experienced much trauma. My feeling is nearly that of jealousy of the mental patients of the old days. There is some dignity to suffering, pain and from facing adversity. Although I’m glad that I was treated well, I am strong from having faced my demons. There is a small part of me that is glad I’ve had such a hard life. And I wonder if I’d be even stronger or more empowered if hospitals had treated me badly. But this is just a feeling and and we will never fully rid the mentally ill of their demons. I have benefited greatly from the strength of the mad men and women of generations past. They have made the sacrifices necessary so that I not need to suffer as they did. And I am grateful. I’m proud to have the responsibility to carry their torch. I’m proud to have had the opportunity to have made sacrifices necessary so that I have within me the strength to improve circumstances for tomorrow’s mad men and women. I’ll hope that my work is appreciated and that again the next generation after mine will continue the fight. We can and have to do everything we can to better understand mental illness. To best understand the mentally ill we need to listen to those have dealt with mental illness and have survived. This is why I write My Side of Madness. We can still improve the conditions faced by those receiving treatment in the mental health system. We could offer more wide open spaces and freedom to be in the out of doors. And because nothing will really alter the course of a person’s recovery but their strength, courage and will to survive, we will not demean their experience by treating them well. Like myself people with mental illnesses will always have incredible stories of battle and hardship to share. ¶21 My Strength, My Family I was born in 1980 on the 13th of March and put up for adoption. In just a few weeks from my birth I would become a Salminen. I would grow up with one older sister, Anna. Each of my adoptive parents, who are in my eyes my real parents, grew up on Long Island. They went to high school together but didn’t start dating until they were in college. In 1969 they got married and moved to a rural town in the norther part of Vermont. Milton became their home and place they would raise me and my sister. My parents believe firmly in Jesus Christ and sing in their church band. They also play music for weddings and were big fans of the Beatles in the 60’s. My dad went to Springfield College in Massachusetts. And my mom went to Fredonia in upstate New York. They each got bachelors degrees at their respective colleges. After which they moved to Vermont and attended school at UVM, in Burlington, to get their masters degrees. They would both get work as school teachers by the time I was born. My mom however took time off from teaching to stay at home with me and my sister. And my dad got work doing what he loved in being a dj. After I reached the second grade my mom resumed teaching the first grade. My sister, Anna, was also adopted 3 years before me. She is now the mother of 3 lovely children and is married to an Army man, Matt Wellman. Their kids names are Elaina, Lauren and Wyatt from oldest to youngest. Anna was a great student and artist while she lived with myself and our parents. She also ran both cross country and track in addition to playing the drums. Her ambition to do well in school balanced out my delinquency and struggles quite well. She was always my anchor. Her and her husband plan to own a farm in the future. I’ll hope that she is able to devote time to her art as well. I can only imagine how it must have felt for my sister and my parents to see me struggle and self destruct as I did. I veered off track from what you would want from a loved one with reckless abandon. But my folks didn’t scold me or tell me that I needed to do better. And for a long time I wished they had. I know very well my father wished he had been more of a mentor to me. But nothing could have ever taught me more of what it is to be a man than having to make my own mistakes. I am very grateful for having the opportunity to discover my strengths. And to figure out on my own what I would make of myself. My mom is the sweetest person I may have ever met. No matter how hard I tried to sabotage her love and support it would never get me far. A family is not just the some of its parts. It is also the strength of the bond between its parts. All of the members of my family by themselves are strong and capable. I admire each one and all have helped me to become who I am. I believe that I am, in my own way, a good contributor to the family that has shown me that their love and compassion they hold for me has no bounds. It is from this love and compassion that I am called to do better out of my adversity. I must use my misadventures to be stronger and live well. I can contribute to those who care most for me equally to the contribution they have made to me. It took some very hard times for me to grow enough to overcome all the adversity I’ve faced. I’d like to be able to say that I just kept doing the right thing. And slowly I got better. However, my healing process was almost in spite of my own efforts. It seems every time that I was helped to get back up I find a way to dig myself into progressively deeper holes. My family is my inspiration and my guiding light. They made all the difference in me choosing to continue in my recovery. At times I didn’t know if there was anything about me that was worth recovering. I had been since a very young age troubled, insolent and a criminal. But on the days I couldn’t believe in myself I could still believe in the love of my family. ¶20 Distressed A few weeks ago now I was quite distressed by thoughts I was having. This pattern of thinking got me so worked up that I made trips back and forth from my room to the kitchen. This involved going up and down a flight of stairs and through a hallway. I must have made this trip at least ten times. It is not uncommon for me, as I go to sleep, to think of the world and life I once believed I had led. It provides me an escape that allows me to let go of my consciousness. The world and life I once thought of as my reality has some fantastic points to it. But also was aggravating and frightening. The night that I was so disturbed, the more aggravating parts of this fantasy I’ve created were at the surface. They were thoughts of struggles I once believed I had had. In this fantasy that I escape to and once believed to be true I was a great warrior. But for the wealthiest people in our country nothing I did was good enough. They would not recognize me for my achievements unless I was to be the greatest warrior of all time. And in some ways I was. I had won three pulitzer prizes and knocked out a yoko zuna. I had raised billions of dollars to feed the starving. And founded drug rehabilitation providers in low income neighborhoods. There were many people who had tremendous respect for me. But on the night that I was disturbed I thought on the experiences of once being shunned and turned away. These were experiences I once believed and now still are a part of me. I spent more than 10 years of my life consumed by this “perceived reality”. I can remember thinking many many times over how I could have won over my critics. These critics of me all perceived a persons worth as directly proportionate to their wealth. I had done all that a person could except become wealthy. I thought then and still do today that we can do greater things than accumulate money. In this delusional experience I thought I would show, by putting my own best interests after that of the world’s, that there was a better way. I thought people would see the error in seeking power and fortune. But among my critics they only saw that I fell short of their ideals. I was on the night that I paced back and forth between my room and the kitchen consumed by the previously stated circumstances I once believed I faced. I thought of conversations I once would have thought had occurred. These conversations consisted of me telling people of the good that we can achieve as human beings. I told them how I had fed the starving and did not need wealth or power to be successful. These people regarded me as a failure instead of recognizing my achievements. The attitude of indifference to the ailings of the world demonstrated by my critics eventually, as I once perceived it, got the best of me. I was once on top of the world but this subsided and I began living as a person who was defeated. Instead of my critics coming to see things my way, I eventually saw things there way. It was a struggle for me to see myself as I truly am for a long time. I am now in a place to see that I never was a great war hero. And yet on occasion these thoughts still haunt me. I once believed I was “fully recovered” but there is no cure for schizophrenia. I have now come to see that I was at one time sick. And although I’m healthy now there are still traces of this disease within me. Recovery is not about being free of symptoms. Some people “recover” and still live with symptoms such as hearing voices. They have learned to live with their illness and manage productive lives despite it. This involves staying healthy and refraining from using drugs or alcohol. People like myself, who suffer from a major mental illness, must be vigilant. On that night a few weeks ago I realized I hadn’t taken my meds. I was able to, after I took them, calm myself down and get a good night’s sleep. ¶19 In Miami — part 2 My new boss, Jack, told me to take the weekend to find myself an apartment. I’d begin my work fixing bikes on Monday. I looked into a number of leads that I got from real estate agents but Miami apartments can be pricy. So I started looking for room shares on craigslist. I went to work on Monday without an apartment. But I had at least found a hostel that I could afford for long enough to find a good deal on a good place. The hostel was on the strip, Ocean Drive, which ran parallel to the beach. I could practically throw a frisbee or football and land it on the sand. But there was no room in the refrigerator there which would soon prove an undoing. I felt a little uneasy on my first day working at the bike shop. As often is the case of having a new job but the pace there was fast. And I had to learn to keep up. My time at the trade school, learning to fix bicycles, didn’t prepare me for this. I had a fair amount of experience though from working in 2 shops back in Vermont. I thought I would soon impress my boss. The primary responsibility I had was to get the rental bikes ready for the tourist season. I did what was called a wash and tune for each bike. This worked in my favor because at that time I was a smoker. I would often wash the bikes with a butt hanging from my mouth. My activities outside of work quickly became an issue. I was for some reason, acting as if I had an unlimited amount of money to spend. Maybe it was because this was the first well paying job I had in years. Or it could have been the lack or refrigerator space at the hostel (I ate out at every meal). However, soon a precarious situation would become even worse. This was as, on the one occasion that I did get food at the grocery store, I met Robert Robertson. Robert asked me for a cigarette while I was walking home. He was tall, 6’ 5” and an African American. I happily obliged him and went on my way. As I started back towards the hostel Robert barked of how sexy he thought I was. I thought little of it. I wasn’t quite adjusting to the fast paced work environment as fast as Jack would have liked. And I was still without an apartment. My money was going fast and I started seeing Robert around often. He was homeless and I felt for him. So I gave him a little money, just a few bucks. Meanwhile I was not taking my mental illness seriously. I had not even attempted to get in touch with a psychiatrist. And was at times going as much as 3 or 4 days without taking my meds. In addition to asking me for money Robert began making passes at me. I had learned by then that he had just been released after a 23 year prison sentence. His “passes” were nearly made by force. I felt trapped. As time passed and I was not getting better at work and in fact getting a little worse. I lost hope. I began to see that this move to Miami wasn’t going to work. I had gone through a lot more money than I was making. I had paid hookers for sex. And of course I had to deal with Robert. This all culminated one day when I found out the hostel would not keep me any longer. I had been getting up early in the morning and another tenant had complained. I was lucky that on the day I was thrown out of the hostel I did not have work. In the month that had gone by while I was at the hostel I had been looking for apartments. One that didn’t sound all that good but was affordable stood out in my mind. I looked into it further and got it that very day. But when I went back to the hostel to get my stuff my $1300 bicycle was not there. Robert had stolen my bicycle from the roof of the hostel. I stupidly didn’t lock it. He then upon seeing me said I could get the bike back for $40. I sadly obliged and never saw the bike again. It wasn’t too much longer then that Jack decided that he no longer needed me. He said he was looking for someone with more experience. I had paid first months and last months rent for the room I was renting. Without any work and having shown that I couldn’t manage to take care of myself in Miami. And having to deal with Robert. I soon realized I had to cut my losses and get back home as soon as was possible. I left and never got my last months rent back; for which I only would have to have given notice that I was leaving. All in all I lost out big time. ¶18 In Miami — part 1 It was just about 8 months and 1 hospitalization since I had been released from a then former group home. I was living with my parents but was looking to relocate. I had been trained to be a bicycle mechanic in order to graduate from the former group home’s “program”. And there were openings for bicycle mechanics nation wide posted on a website. I had since being trained in bicycle maintenance apprenticed a family friend who fixed bikes out of his 2 car garage. I had seen a number of bikes and by the time I began looking to relocate was quite competent and efficient at fixing these machines. This was the beginning of what was supposed to be the last chapter of my bout with schizophrenia. I had seen a number of openings for mechanics from all sorts of places around the country. But I wasn’t thrilled about them. One was all the way up in a small Alaskan town. There was also a position available in Arizona; but they were looking for a service department manager. I wanted to move ahead in my bicycle maintenance career more slowly and deliberately. I thought it was best to not bite off more than I could chew. It wasn’t too long however before I found an opening that really appealed to me. It was a full time mechanics position in Miami, Florida. Miami was especially appealing to me because it was known for it’s promiscuity. I had as a result of my schizophrenia experienced what I describe as extreme social awkwardness. I had been single, celibate and emotionally unattached by this time for about 8 years. Which was for me at that time nearly a death sentence. If you can imagine spending the vast majority of your 20’s alone I’ll think you could understand. With that in mind I called the bike shop in Miami. They said to me that they wanted to fill the position immediately. If I wanted the job I’d have to be there in no more than a few days. The idea of moving to a new place as exciting as Miami got in the way of my better judgement. I didn’t think of setting myself up with mental health services in Miami. I didn’t think I needed them. After all for years before my diagnosis I had done fine without therapy. In my mind having my own place in a city full of beautiful women and a decent job would be all the therapy I needed. I flew down to Miami just a couple days after speaking on the phone. I arrived in Miami and the weather was beautiful. I dropped of all my stuff at the hotel that I would stay at for the next couple of days and headed to the bike shop. There I met the owner and his sons. It was called the “Miami Beach Bike Center” and was family owned. The owner, Jack, had this shop in the city for decades. It was a little smaller than I expected and jam packed full of bikes. Jack and his sons were of Cuban decent. After we introduced ourselves Jack told me to come in the next day to build a bike. New bicycles come partially disassembled to fit into a box. I had assembled many bikes in the family friend’s 2 car garage. The next day I arrived confident that I would get the job. This was a big step for me and not just because I was moving to a major metropolitan area. I had struggled with having a decent job much of my adult life. It had been a long time since I made any more than minimum wage. In fact I’d had some of the worst jobs conceivable, including a job cleaning port-o-potties. That next day I completed my task of building a bike and I did a good job. One of Jack’s sons told me that they were going to check my references and criminal record and that they would let me know the next day if I got the job. I left and spent the rest of the day enjoying the warm sunny weather in the city that would become my new home. To be continued... ¶17 Out of Nowhere Well before I ever experienced symptoms of schizophrenia I was a sort of a misfit. I had to repeat Kindergarten for reasons I don’t really recall. But it was the first of many deterrents from what may have otherwise been an acceptable or maybe even illustrious academic career. In the first grade my teacher, Mrs. Dragon, was concerned that I did most of my work standing up. Mrs. Dragon tolerated this but never the less I got into my fair share of trouble. But academically I did quite well that year. This level of achievement only lasted until teachers began giving out homework. By the time I was in middle school I was verging on being a flunky. I was transferred from one set of teachers to another due to a personality conflict. This would be a recurring theme in the years I attended school. Of the 2 teachers I was transferred to I had a great time with one of them. Her name was Mrs. Kucij. She was a warm and compassionate person and all of her students loved her. In the years that I had Mrs. Kucij my duffel bag was titled “The Black Hole.” I never passed in any homework. And as a result of my mischief I was almost not allowed to go on the big class trip, a whale watch. I had to have a meeting with the teacher that first ordered that I not go on the trip. Mrs. Kucij was present and she advocated that I get a second chance. The lack of enthusiasm for academics continued and was even exacerbated when I reached the Milton Jr. and Sr. High School. But oddly enough the faculty at the school decided after I finished the 7th grade that maybe I should take 9th grade classes. They thought that the added challenge would incite interest in me. That next year I took a 3 or 4 high school courses and the added challenge helped me a little. But not much. I did well in all my courses except German which I failed. That would be the last year I would do so well in school. It was nearly certain by that time that I would not have much of a future as a student. I embraced my role as an underachiever only slipping further behind as the years went by. It was when I hit the 9th grade that I came into my own as an underachiever. My downward spiral was hastened by my lack of athletic eligibility. With all the time I had to do no good that I would have otherwise spent at practice I veered off track. I left the world of bright yet difficult student to criminal. It seems likely that this was influenced by schizophrenia. It was also the 90’s however, and I’m not going to blame all the mistakes I have made in my life on my illness. Being the 90’s gangster rap was huge; I was highly influenced by this music. I guess I thought if I was to be an underachiever I would be a great one. In the years after the 9th grade I did a little time (just a weekend) and dropped out for a little while. But I graduated, barely. I continued to live recklessly after I graduated. But also I began the process of growing up. I joined the work force. The trouble seeking youth was slowly dissipating into a responsible adult. But shortly thereafter my trouble with my disease exponentially increased. I could have been a young man who had a lot of potential and wasted it. But for some reason or another I got put through the ringer. The difficult life I was leading became dreadfully tragic. It found me in such a hole that for a while I believed I would never climb out. However, it is also that I have been afflicted by my mental illness that I’ve rediscovered the brilliance and strength I have inside me. It was almost forgotten and almost left behind. I have since beginning my journey to recovery seen myself as determined and capable. It is from the difficulties and injustices I have experienced in my battle for sanity that I have gained purpose and understanding. I wouldn’t wish on anyone that they have to fight off the demons I have. But I’m not sure I would ever want to have wasted all that I can offer the world. If I were to have been just a fluky and an underachiever it would have been equally tragic. ¶16 Behind Bars It was now 6 years ago when I was diagnosed as having schizophrenia. Of all the difficulties and hardships I’ve experienced as a result of this disease my silence may have hurt me the most. I can think of nothing more frustrating than to not be able to communicate the difficulties I was experiencing because I feared people would think I was crazy. In spite of having a schizophrenia diagnosis I still clung to the belief that I was alright. And maybe I thought if others saw me as healthy than I would somehow be less dependent on the mental health system. For years I kept up this front of rational behavior and astute observation pretty well. But all the while within my heart and in my mind I was tormented. It has been said that people suffering from schizophrenia may feel as though society has singled them out. I certainly felt this way. My experiences had been so extraordinary. I had done things such as swim across the Atlantic Ocean and was quite famous. As you might expect. But my fame was isolated to the wealthiest people the 1% percent of the population. The rest of society had been deceived. They knew very little of how things actually worked in the world. And of course knew nothing of my exploits. I had worked hard on all I had achieved as a young man but it was for naught. I was left adrift in a world just as an ordinary person who had fallen one too many times. The feelings that I couldn’t communicate my difficulties for the fear that people would think I was crazy began well before my diagnosis. I felt my experiences had been so extraordinary that no one could ever understand me. I thought it would somehow be my fault if I did communicate what I thought my experiences had been to anyone and they didn’t understand. I thought that I could blame no one but myself for a disease I didn’t believe I had. And was still yet to be diagnosed with. It was safer to not get noticed and so I tried to be seen as healthy. I tried to slip under the radar. This continued well after I was diagnosed. It may seem odd but no one wants to believe that they are mentally ill when they are first diagnosed. They don’t want to need support. There were a couple instances in which I did try to get a little of what I had believed I experienced across to mental health professionals as well as my peers. It was at a group home shortly after my first hospitalization. And at my second hospitalization. I told people of my military service. I explained in an intake interview to be admitted to a hospital that I believed I had been a general since the age of 14. I didn’t however explain that I believed people would harm me if I didn’t spend the rest of my life in jail or that I had a rat in my brain. Not much came from what I said. My peers did confront me but the psychiatrist and other mental health workers didn’t really try to discuss anything with me at length. The times that my peers confronted me just affirmed my suspicion that no one would understand my predicament. And that I should just keep quiet. Ironically it was in jail that I first felt no one would judge me any differently because I was crazy. When I first got to the correctional facility in June of 2011 I intended to keep quiet. But my fellow inmates reached out to me. They knew I was in a bad place and they helped me to feel a little better. I told them a little of my supposed experiences. They listened. They saw me as another inmate not as a patient. I was one of them and not a client. I have since come to understand that I have been very delusional. It wasn’t directly from opening up about my paranoia and false beliefs that made me realize I was ill. But the men I shared the confines of a correctional facility planted a seed in me. They taught me that I was a human being that deserved to be treated as an equal. And as a friend. ¶15 New light from a deserted island As an adolescent I was smart yet troubled. It is only recently that I feel I have begun to fulfill my potential. I began writing a little less than a year ago. My subject was, as it is now, mental illness. The process of writing of my experiences with mental illness has transformed me. I was before lost and confused. At one time I thought of myself as such a lost cause that I could do no better than to rot in jail for the rest of my life. In writing I found something meaningful. It has helped me to come to a place that I feel my gifts are of use and that I can make a difference. I once had high hopes of being on the PSIA(Professional Ski instructors of America) national demonstration team. It is more or less the dream team for ski instructors. I had a good coach and mentor, Mark. He had himself been on the team as a young man. I was his protégé. My potential to be successful in this endeavor was quite good. But I had no other cares of how I could make a significant contribution to society. But at this time of my life when I was an aspiring ski instructor I encountered many bumps in the road. I think my future battle with schizophrenia was just beginning to be apparent. There is a big question of which came first my illness or my difficulties. Was I showing signs of a descent into madness through frequent run ins with the law? Or did I just venture out into the world as many young people do venting my anger getting in trouble and eventually losing my way? Either way the frequent but mostly minor legal difficulties I experienced built up. The speeding tickets were expensive; and the time I had to take off from work for community service offset my progress into adulthood. Yet oddly it was these misadventures that slowly would lead to my success and significance in the world that so frustrated me. At age 22 I had my drivers license suspended and lost my job bussing tables. I would spend the rest of the summer reading and fly fishing. It was sort of the last hurrah before I began to suffer of schizophrenia too much to be productive. In a little while I would begin isolating. My skiing career was nearly over. I went to live in Aspen, CO. at the very beginning of 2003 but my paranoia kept me from pursuing work. I was then deeply and profoundly ill. And still I would go undiagnosed for another 4+ years. In that time I had no social interaction and certainly no romantic relationships with women. My descent into madness was like that of taking a ferry boat out into the water. At first land is just a short ways away; it becomes further and further but slowly. I had, by the time I was living in Aspen, lost sight of the main land. The man I once was had been lost. I was no longer the young and ambitious ski instructor I had once thought I would be. Imagine your ferry boat somehow becoming lost at sea. In the years between 2003 and 2012 I was lost on a deserted island. I was trying to begin a new life out of the terrible experience of having become mentally ill. I had by 2007 begun receiving treatment but still the affect of the illness was too strong. I couldn't manage. I felt as if I were constructing a hut for myself on this deserted island. But the hut was destroyed by a hurricane. In recovery I had to fail at making what I would call a satisfactory life for myself. I had to see that there was something greater out there for me. I had to know that my difficulties had amounted to something. I still have schizophrenia and always will. But the shelter I have built for myself can weather any storm. Each time a hurricane passed I learned a little about the skills needed to build a quality shelter. I learned what materials worked well and which didn't. I built a life for myself that wasn't what I thought others expected of me. I was happy being a ski instructor but without the hard times I experienced I feel I would have wasted my potential. I have something now in being a writer that I see as equally great as schizophrenia was difficult. But maybe it was the difficulty I've faced that let me see my world and my life in this new light. ¶14 Adolf and Napoleon and Me For a long time I believed I had a rat in my brain. Someone I knew unscrewed the top of my skull and placed it there. This is obviously not so. This story is of how I came to believe this and why it was so hard to let go of this delusion. A large part of this story is fictitious; it will be the story I believed. And it will provide a backdrop that I hope will help you understand the circumstances I faced for many years. This story begins in 1987 when I was a young boy. As a young child about 7 years of age my parents abandoned me in New York City. I met a group of young hoodlums. They were young adults. I spent a whole day with them in the city. They would drive me to my grandparent’s house in Long Island the next day. These hoodlums and I would become great friends in the years to come. I was especially good friends with one of them who I will call Bobby. The friendship we forged on that summer day in 1987 would blossom as I became a young adult myself. Bobby and his friends would often come up to Vermont and we’d hang out. By the time I was becoming good friends with Bobby I was well on my way to being a great warrior. Bobby admired that. However, he thought I was taking it too far. He didn’t think it was my place to out do Adolf or Napolean. At the age of 22 I was a hairs breadth away from being the greatest warrior who had ever lived. And Bobby decided to end it. One evening when Bobby and I were hanging out and I fell asleep he put a rat in my brain. My whole life as I knew it, in my delusional existence, hinged on that act. On that evening. Before that event nothing could stop me. I was one of the most successful men who had ever lived. That night it was like I was hit by a freight train. Like I had woken up from a dream. I was 22 when I began believing I had this rat in my brain. But I think some of that story may have been fabricated earlier in life. At 22 I was living in Johnson, VT. I believed that I was prior to having the rat in my brain a genius. I believed that at age 21 I had won 3 pulitzer prizes. Then at age 22 I was the first man in history to knock out a yoko zuna. It was after my knocking out the yoko zuna that Bobby placed the rat in my brain. And also at that time my delusional world that I created would collide with my real life. My actions became highly influenced by my delusional beliefs. The belief that I had a rat in my brain would have even more significance in my journey to recovery than it did at age 22. In 2007 I was hospitalized for the first time. While at the hospital my doctor requested that I get an mri. He wanted to see if I had any brain tumors. Quickly after the mri concluded I got to my feet and asked if I could see the image. And I was granted permission. I saw the skeleton of a rat right there on the monitor. This is the one and only time that I am certain I hallucinated. In the years that followed I was medicated and in many ways I got better. My paranoia became less acute. And my quality of life improved. The fears I had subsided with the medication but were not gone. The hallucination cemented in my psyche that all I believed of my exploits as a young man had actually been the case. There was no evidence of my exploits such as winning 3 pulitzer prizes. And I did try to find this evidence. But when I found nothing I could always reassure myself that I wasn’t crazy by citing the time I saw the rat skeleton on that mri monitor. This belief system would eventually break down. But in my travels of coming out of this bout with madness I nearly lost my way. ¶13 Freedom ride So there I was 27 years old and receiving treatment for schizophrenia at a private group home. I felt at that time as though I were trapped. As if I had to endure a life I wanted nothing to do with. I went to this group home indirectly from a psychiatric hospital. The hospitalization would be my first of 4 and was the result of a suicide attempt. The director of the group home saw me in the miserable state I was and thought I could benefit from having more to do. With his help I got a job at the local Ace Hardware store stocking shelves. As the program director of this group home thought the job was helpful. The work I had didn’t pay much but it got my mind off of all my troubles, that my spirits were lifted. My boss liked me and would eventually write a very complimentary letter of recommendation. This was the first job I held for more than a couple months in years. But something even more important and certainly more beneficial to my quality of life happened as a result of getting this job. That was getting an old but quality 10 speed to commute on. The bike I got came from a small garage bike shop that a family friend owned. It was a vintage Austro Daimler. I later learned that this make of bike was considered a collector’s item in certain circles. It was my first road bike and I loved it. In fact I still love that bike today. I began doing short jaunts in the surrounding area. It was early fall. My bike rides were generally no more than an hour and a half. The exercise and beauty of the country side kept me going; and I was doing far better than when I arrived at that group home. The weather did eventually turn from autumn like to wintery but by that time I love riding my bike. I was hooked. Periodically I would go on the internet that winter to explore the world of bikes. One thing I found that made me curious was that of the century ride. A century ride is 100 miles of riding done in 1 single day. I had been told by my psychiatrist that exercise was very important for my recovery. I was still quite young and interpreted that as: the better shape I get into the better my mind will function. And being the determined individual I am I decided to be able to do century rides next spring. Despite being a cigarette smoker. When the weather got warm enough that spring I began riding again. And I had found a 3 month training plan to get up to a 100 mile bike ride. It mapped out every day whether rest days or riding days for the three months. I would ride 4 to 6 days a week for that time. While each week I would incrementally increase my mileage. When I wasn’t on my bike I was doing house chores or on a stationary bike at the group home. I would ride when it rained or if it were especially windy. I began exploring further and further out into the country side. The rides were getting to be more and more challenging. One time I rode my bike all the way around a fairly large lake (Lake St. Catherine). It was probably a 40 mile ride all together. When I got to the half way point of the ride I was unsure of if I’d be able to get home. The route I took to get there had been hilly. I asked someone for a second route to get back that might be less hilly and was successful. I made it back. When I did finally get up to doing century rides I was strong enough to have possibly done that ride 3 times over. The theory in cycling is that if you can do 70 miles comfortably you can do 100. The days and the weeks passed and I kept getting stronger. The last week before I would do my first century included a 70 mile ride. I did it but was anything but comfortable. My legs felt week (I had done a 50 mile ride the day before). But more than anything my ass was sore. I didn’t know then that the tight shorts cyclists wear were padded. I could hardly sit down. In fact at one convenience store I stopped at to get a drink I couldn’t sit. But I got back on my bike and made my way home. I was determined. That was the hardest ride I’d ever do. I eventually did do my first century. And started doing one every month. The feeling I had of being trapped when I first got to the group home was gone. I could go out for the better part of a day in any direction I wanted and would invariably have enough strength to get home. This gave me a feeling of freedom that is indescribable. I always kept a map with me and sometimes I would get lost. The experience of doing such a feat of endurance taught me a lesson. I think my recovery was similar to some of those rides. I in having a mental illness had gotten myself lost. But I was, with the help of others, able to pull out a map. And I found I had the strength to get myself home; regardless of how tired getting myself out there had left me. ¶12 Deserve Prior to being diagnosed with schizophrenia I had also been misdiagnosed as having ADD and Asperger’s on 2 separate occasions. This was just the first of many wrongdoings of the mental health system in my journey to recovery. The onset of schizophrenia was in my case as it is in many, quite gradual. I believe I dealt with this illness and functioned fairly well for several years; however, at age 22 I really began to unravel. I no longer functioned instead I isolated and did very little to help my own cause. Still I went undiagnosed until the age of 27. And even then I don’t feel I was given due treatment. Dr. C, who diagnosed me, should have educated me and pointed me in the direction of the services I so desperately needed. He instead just gave me a prescription. As it was I went 4 years from being diagnosed before I met one on one with any therapist. I had never heard of peer specialists and couldn’t conceive of being in a position of being healthy again. The fact is that I was still in denial. I didn’t even understand that I was unhealthy. Recovery was a word I still associated with addiction for years into receiving treatment. In these years beginning just months before my diagnosis until less than 6 months ago I was in and out of institutions. This included 2 incarcerations, 4 hospitalizations and nearly 3 ½ years spent in group homes. The best of these was most recently was at Meadowview, my most recent group home. And the worst of these was our State Hospital. The problem with mental health treatment is that if it is not done properly it can hurt a person more than it will help. I had many instances in those years of going in and out of institutions in which I could have taken a turn for the better. All I needed was to be treated as an individual instead of an illness. My case was that of someone who was confused and afraid. It has been in my experience that no medication can alleviate such a state. I did eventually receive treatment that was adequate. At Meadowview I began working with peers who had themselves recovered. Each of these (M and L) encouraged me and inspired me. It was they who helped me to see that I could live with this illness. It did not mean I had to have a less inspired or meaningful life. Instead I saw that I could emerge out of these tragic circumstances stronger than ever. My experience in the mental health system was to say the least, traumatic. I’ve come to a place in which I feel I have a responsibility to advocate for others who suffer from mental illness. And I am not alone. My tragedy, which found me on the brink of taking my own life and locked up now fuels a life of purpose. I began to see that I could make a difference but failed to see exactly what would come from taking steps to do so. At first my mission was far less ambitious or impactful than what it has become. I have grown in the process of telling my story. I have healed in knowing that my suffering was not in vein. I am taking on more and more responsibility as the days pass into weeks. I began my advocacy work as a writer and then a speaker. Today I’m looking to expand off of my work as a writer and speaker by doing peer counseling. My life is right now very simple and yet it is it’s simplicity that keeps me at peace. I love that I have the freedom each day to make it what I will. As a struggling writer I am not bound to the rigors of a traditional 9 to 5. I am not just indulging myself however. I feel I am instead fulfilling a responsibility to fight the stigma facing all people who suffer from mental illness. All in all I am living a modest yet very meaningful and enjoyable life. For this I am grateful. And as this advocacy work begins to be more and more involved I wonder if one day I will reflect on this time in my life and smile. I may have to one day leave behind the freedom that comes with being a small time columnist. But today I still can be happy to live and be free which I very much deserve. ¶11 Meds I have noticed a trend in my sleep patterns. It is that on nights that I forget to take my meds I’ll lie awake for hours. My mind gets preoccupied and I can not really achieve a restful state. I do eventually realize that I in fact forgot to take my meds and do so. Before too long after taking my meds I’ll invariably fall asleep. This trend in my sleep patterns is something I take note of. I could otherwise see how well I’m doing in my recovery and flatly deny that I need my medication anymore. There are many out there who do eventually get off there medication. This is true even among those who have schizophrenia. I’ve had a number of medication slurrys over the years. Right now I am taking a relatively high dose of zyprexa which is an anti-psychotic. This high dose has caused my cholesterol to be elevated. I had in years past been on lower dosages of this medication and not had trouble with my cholesterol level. In addition to causing high cholesterol zyprexa has been known to cause diabetes. Due to my raised cholesterol level I also take a med that is to lower my cholesterol level. At one time I made a switch to abilify from zyprexa. This was because I had learned that zyprexa can cause diabetes. I have since heard that abilify can also cause diabetes. So I am unsure why my psychiatrist at that time authorized the switch. My sleep patterns are of particular interest to me. Immediately after my switch from zyprexa to abilify I had trouble sleeping for an entire month. After this month of sleeping poorly I put myself into a hospital. My paranoia was accentuated from my restlessness. After this hospitalization I was given a sleep aid called ambien and a book on how to sleep better. These did not really help as I recall and I wasn’t switched back to zyprexa. I did however begin sleeping better but only temporarily. It was some time before my next occurrence of sleep deprivation and again I put myself in the hospital. This time I was again administered a drug to alleviate my trouble sleeping. This time I was prescribed seroquel; I was seeing a different psychiatrist. But still I was kept on abilify. I was in jail for a significant portion of the summer of 2011 before I was transported to the Vermont State Hospital. While I was under the care of the department of corrections I stopped taking my meds all together. I subsequently began talking to myself all the time and laughed hysterically at nothing. One guard made note of my behavior however, he thought I was crying. I was totally out of my mind. I did improve some from that night that the guard noted my behavior. And it was without going back to my meds. But I was still opting to isolate in my cell and watch tv instead of going out to the yard. I was immediately switched back to zyprexa upon being admitted to the State Hospital. And at the Brattleboro Retreat the doctors increased my dosage to my present level. I may be better off to take this dose of zyprexa as it is. If my sleep patterns suffer and I am less outgoing without it than I believe it is important. Before I noticed this pattern in my sleep disturbance I didn’t think I still needed my medication. I may still inquire about having my dosage decreased. I would be very happy to not need to take a med for my cholesterol level. However, the evidence is empirical that I will have to continue some sort of medication regimen. It is also apparent that zyprexa despite the bad side effects is the right choice of medication for me. The fact that I have to take a medication that has such bad side effects is just one of the unfortunate repercussions of having a mental illness. These days I keep a careful eye on myself. And I prioritize my well being above just about anything else. This latest incidence in which I noticed my lack of sleep and knew why, is important. This stands in contrast to the two prior incidents I mentioned when I couldn’t sleep. This time I figured out what the issue was this time and avoided having to be hospitalized. I have seen enough instances in which my well being was compromised and I let my symptoms continue to get worse instead of making necessary changes. This change in attention to my well being is part of what recovery is all about. We grow and learn from the mistakes we make early on and are this way stronger and more capable. ¶10 I am strong Schizophrenia was in my case marked by an inability to tell fact from fiction. Anytime I would day dream this day dream became a part of what I perceived was my reality. All my accumulated day dreams became interwoven. My perception of myself and my reality grew more and more skewed. I no longer have this experience. Yet it wasn’t taking a pill or doing therapy that relieved me of this aspect of my illness. The single greatest turning point in my recovery was when I educated myself on this illness, schizophrenia. However, I didn’t take the responsibility to educate myself until a great deal of damage had been done. I could have taken this responsibility myself. And still I think the mental health professionals should have guided me to taking this responsibility. I wasn’t totally in denial in the first years after being diagnosed. Instead I rationalized this diagnosis. I can remember my first hospitalization. I can remember saying to myself “these doctors finally know I have schizophrenia.” My delusional mind created the “false experience” that I had always known I had schizophrenia. It is how I told myself that I was ok. I didn’t know what schizophrenia really was. And I saw no one around me that I would consider to be delusional. I didn’t know that others out there were like me; that other people didn’t remember their lives as they happened. This lack of knowledge enabled me to perpetuate my delusions. It is understood among mental health professionals that you shouldn’t challenge a person’s delusions. You don’t attempt to explain to them that the things they believe happened could not have. This is something I don’t fully understand. I have experienced people confronting me on stories I told, that they realized were false. These people were housemates of mine in the first of the two treatment homes I’ve stayed in after being diagnosed. It was at this first treatment home that I came forward about my false beliefs. I never told my parents because I felt I did not know where to begin. The mental health professionals at this same treatment home told people behind my back that I had never done some of the things I came forward about. They did not however address the statements I made directly to me. There must be a better way to guide someone to recovering than this. Mental health treatment as I have experienced is very enabling. Living in a group home is like being a child. And I do understand that there are steps up, from group homes, that many people are placed in when they are ready. But still I envision a different way to address mental illness. It would not be for everyone. I suggest that there be a place to receive treatment that is really hard. The cornerstone of this treatment would be education. And it would be hard so that those who received treatment at this facility would be proud of themselves for making through. In the current system every minute and every day feels like it is wasted. It feels like you are falling behind. Ours is a broken mental health system. It is because we do not give the recipients of mental health services the credit they deserve. Mental illness survivors are strong and resilient people. They deserve to feel that way. I left that first group home I previously mentioned with false hopes. I believed I could live a normal life when there is very little normal about me. I went from that home back to my parents house which further exacerbated my feelings that I was falling behind. I didn’t know then that I could be doing work to better the lives of others with mental illnesses. I didn’t know there was an entire peer movement going on in the world. I was not empowered. My symptoms of schizophrenia re-surfaced a while after graduating from that first group home. I had lived there for two and one half years and in a way got worse instead of better. But now things have changed. It was in falling very, very hard that I finally saw that I needed a change. I made the changes I needed not thanks to my medication but because I am strong. ¶9 Volunteering It was some time ago now that I was first encouraged to pursue a career in peer counseling. The person who gave me this encouragement was her self a peer coordinator at my former group home (Meadowview.) A peer specialist is essentially a mental health counselor who has experienced mental illness in their lives. At first I disregarded the encouragement to pursue this work. I thought of it as out of reach as I have no college degree. But Liz (the peer coordinator) made a point to encourage me to pursue this type of career a second time. This time I took her seriously and we discussed the opportunity this type of career could be for me. Shortly there after I began volunteering at a peer support agency in Keene, NH. Near and around this same time I began writing a mental health blog. You may find this blog at www.breathebrattleboro.blogspot.com. This blog became the cornerstone of my daily activity. I published as many as 3 articles a day at times. My eyes opened up to a whole new world of opportunity. I became in the process of creating my blog a dedicated writer. The craft of writing and the practice of putting my experiences and ideas in writing was a joy. But it seemed for a while that writing might supersede any other type of peer work I might do. After leaving Meadowview I could no longer make the trip to Keene. For a short time I was looking to work at the local mental health care agency. They are currently examining the possibility of opening a peer center in town. It would be similar to the agency I worked at in Keene. However, I am a client at HCRS already and thought being an employee may be a conflict of interests. I ended up deciding to focus on writing. I’ve since discontinued writing my original blog (Breathe.) However I quickly began writing this column in Vermont Views. I have now been writing about mental illness for over 8 months. And I did not want My Side of Madness to simply be a rerun of my first blog. I felt as though I had covered my experiences with schizophrenia pretty well in Breathe. As a result this challenge of keeping my writing fresh and interesting would not be easy. I needed something else. There was an opportunity right there in front of me for months now that I never took advantage of. I instead kept my mind on the potential of offering peer counseling to inmates. I spoke on the need for this type of service in Montpelier. The one thing standing in my way of going ahead and doing it is a lack of a car. I went to the polls for the last election not too long ago. There outside the high school was a young lady representing a grass roots political organization called Put People First. One of the main issues they push is universal health care. This is relevant to mental health care and so I took time to listen to what she had to say. We made an appointment for me to fill out a survey and I would eventually go to a meeting of theirs. At that meeting I met Lucy. She is the director of the drop in center in town. I gave Lucy my card. Meeting Lucy made me realize that the opportunity I was waiting for was right here in Brattleboro. I will be beginning to volunteer as a peer specialist at the drop in center in a couple weeks. It’s funny that I have for so long overlooked what was right there. I was so intent on serving one specific demographic that I ignored another. The drop in center presents an excellent opportunity to provide quality mental health services where they wouldn’t otherwise be. There is just as much a prevalence of mental illness among the homeless and destitute as there is among the incarcerated. Maybe more. I wanted to do peer work as a volunteer. It is important that we the mentally ill come together to fight the stigma and circumstances we face. And until we all begin to act in favor of our cause before ourselves as individuals we will continue to fall behind. ¶8 Had I known Had I known when I was 14 that smoking pot could result in the on-set of schizophrenia I may have thought better of it. That is if I could have understood at that young age exactly what it is that many young adolescents don’t understand. That is of how long a journey life is; and how decisions we make when we’re young effect our entire lives. We are meant to fall as we transition from being children into adulthood. And some of us fall hard. I have learned to live with the decisions I made in this time of transition. Some were worse decisions to have made than just to light up a joint. Today, I am proud of my journey, my mistakes and I love the life I am living. Yesterday, I spoke at the state house in Montpelier. It was a great honor to take part in the days activities as I did. The work I do each day to advocate for others with mental illness is something I do not for recognition or money. I would be happy if I could do my part in advocating for the mentally ill just to get a few words of encouragement from my readers. I was reminded of how special that feeling is only a few hours after the days proceedings in Montpelier. The family friend I stayed with in after the proceedings mentioned to me how helpful my blog (Breathe) was to her son. I spoke twice in the State House. Early in the morning I spoke on the third floor in a committee room. The family friend I mentioned prior was there. She is a representative from Randolph. My parents were also there sitting in a corner behind me. I felt very at ease. It was requested that I speak on peer services. And I made the point that this type of service is not nearly accessible enough. I had myself not even known what peer services were until nearly 5 years after I was diagnosed. I spoke again in a large assembly room later in the morning. This time I was speaking mostly to others who were also in recovery, both from addiction and mental illness. I was very nervous but did get my key points across. When I was 14 I didn’t care where I would be 19 years later. I was too ideological and swept up in the moment. I smoked pot and lost interest in school (of what little I had left.) I got in trouble with the law more than once. However, if I could have had my way my life would not have been easy. I wouldn’t have wanted to play it safe. In fact I would have if I had had the choice been very nearly the person I am today. This is as I see it a person committed to a cause without much material or worldly success. I have always admired people that led inspired and meaningful lives without worldly success. And I believe that this is very much what I am doing. I’m very thankful that I do get to pursue meaningful and dignified work. Which is very much a result of the public benefits I receive. But more importantly I have taken from my difficult circumstances a great appreciation for things I may have otherwise taken for granted. I have from seeing my parents unyielding compassion gained inspiration. And I live each day now with a sense of purpose. This purpose is rooted in the difficulties I share with others. I know I can use my experiences to help others who deal with mental illness have better lives. I am proud to do what I am and just be me. All the times I have fallen down and struggled have given me strength and resolve. Had I known when I was 14 that in just 19 years I would get the opportunity to speak in the state house. I would be overjoyed. I always admired public speakers. I would rather have followed a difficult path to gain the purpose and understanding I now have. I would rather fall and struggle than to have played it safe. Today it is a joy to have each day be new. And I am open to all the possibilities that life presents. For which I am thankful. It is not easy to see our lives this way. But if we try we can be aware and open to all of the good that can fill our lives. We can be take difficult circumstances and allow them to empower us. We can fill our lives with joy and appreciate the little things that keep us going. ¶7 Living a good life In my previous article I mentioned the importance of living a good life. This is true for all of us. However, for someone that carries the additional emotional burden of a major mental illness this can require a lot of work. I tried hard for years to put behind me what I now embrace. I thought I could solve my problems just by putting my nose to the grindstone. I thought that living a productive life would be fulfilling. And this is not terribly far off from my current perception of recovery. The big difference is that now I live according to my heart more than my mind. So to recover from schizophrenia I had to stop doing the same old thing over and over. I am referring to the endless cycle I experienced as a young man of getting work, getting fired and getting more work. I tried my hand at blue collar work. But had a rebellious streak in me. I would always try to do things my way. And this would always get me fired. I had little interest in pleasing my bosses. I wouldn’t skimp on the effort I put into my work. I just didn’t fit that mold. Fitting myself into the mold of being a blue collar worker became increasingly difficult as I grew more ill. Schizophrenia for reasons I do not really understand does make working harder for many people. The one thing that kept me going as a young adult was skiing. It was my passion and I was good at it. I taught skiing for 5 years. It brought me a great deal of happiness and a sense of belonging. When I became too ill to continue skiing it seemed things could only continue to get worse and worse for a long time. When I was finally diagnosed (5 years later) things did improve. I got and held down a job for over 2 years. And I took part in activities I liked. I began playing chess and cycling. These things were good and they helped me through a difficult time. All who saw me in this time of my life after I began receiving treatment for my illness saw a stark improvement. I was fit and was for the most part making the most of difficult circumstances. I was trying to resume a normal life. I was trying to be a responsible adult. But yet again I failed. It wasn’t any longer because I wanted to do things my way. It was just because I was severely mentally ill. In the early summer of 2011 I had a tremendous breakdown that would change me forever. This change fueled my current life which is more fulfilling than ever before. I couldn’t continue on as I was any longer. In December of 2011, I went to Meadowview Recovery Residence up a little ways on Linden St. I received there the best treatment ever. I was encouraged to continue putting one foot in front of the other. I was given hope. Things could never go back to being as they were. I had fallen too hard. I slowly came to see myself in a new light. I began writing. The process of writing fulfilled me and helped me to reinvent myself. I came out of my horrible experience a with a new lease on life. I can’t put into words how important it was for me to discover that my story and my experience with schizophrenia were as valuable as I did through writing. I am as happy now as I have ever been. That is largely because I now am empowered by my mental illness. But it is also that I live in an area that suits me well. And because I am no longer symptomatic. I have learned something from this experience of losing all that brought me happiness. It is that often we are best in letting go instead of holding on. In my early years of dealing with my illness I was ashamed of myself. I tried to hold on to what little dignity I felt I had left by toughing it out. It wasn’t however until I could accept myself as a person who was disabled that I began leading a fulfilling and productive life that brought me happiness. ¶6 Empathetic The purpose of My Side of Madness is to raise awareness around mental illness. I hope this article will promote empathy for those of us, that suffer from mental illness, and resort to violence. We see all the time people who have lost their minds and cause others tremendous harm. They even will resort to murder. I see this outcome to mental illness as very understandable. And I feel lucky that I never resorted to the “perceived circumstances” I thought I faced in such an extreme manner. I have tried getting myself put in jail as I thought it was the only safe place for me. But I fortunately never caused anyone serious harm. I have schizophrenia. I do not hear voices. There are many people who with a schizophrenia diagnosis do hear voices. You may wonder, if I don’t hear voices what do I experience. The answer is that I have but no longer experienced delusions and paranoia, primarily. I have also hallucinated. The delusions and paranoia fed off of one another. And the one time that I am sure I hallucinated it cemented my other symptoms. I would often remind myself of my hallucination to affirm that I wasn’t delusional. My hallucination was of an image of my brain I saw from a cat scan. The image was that of a rat. I believed this rat to be lodged in my brain prior to the cat scan. However, when I actually saw it all my false beliefs were confirmed. My delusions and paranoia were intertwined and almost inseparable. I viewed our society as a much harsher version of what we really have. And I had created “life experiences” in my mind that were very distressing. This reality that I believed was the true reality was kept from the 99%. The upper rung in our world were very cruel to each other. I was by myself the one among the masses that knew of this cruelty. This is an important point. I always would dismiss people as being ignorant as a reason they didn’t understand my dilemma. And that I was able to dismiss them I hung on to my beliefs for much longer. I created specific events in my mind such as seeing people getting their eye balls burned with lighters. I also saw people inflicting extreme harm on themselves. Beyond this reality simply being exceptionally harsh I had reason to believe I would myself be tortured far worse than I had ever witnessed. The reason was that I boasted of how much hurt I could take. I can’t fully explain why. However, I did this very ignorantly when I was an adolescent. The upper rung of society took this boast as insulting. And they were intent to see me make good on what I had said. However, I was pretty clever and managed to create for myself an out. I struck a deal with these people that intended to harm me. It was exactly that I would in my early years be a great war hero. And then later in life spend my days in jail. They accepted this deal. It was when I was 22 that I began believing I had made good on the first part of our deal. I had been a great war hero. I still had yet to get life in prison. But I had done such a bang up job at being a war hero those that originally wanted to cause me harm were sympathetic towards me. I would not have to get put in jail for some time. Years past and the urgency of which I believed I had to put myself in prison faded. At times my paranoia was quite strong. But I did think in other times that I could get away with not going to prison all together. These times would be interrupted by times in which I felt the risk was to great to take. The torture I thought I may receive if I didn’t get put in jail would just be too harsh. I got myself incarcerated twice as a result of this paranoia. And made one serious attempt at killing myself to escape my fate. I considered suicide many many other times. I finally concluded in 2012 that I did not have a rat in my brain. And that no one sought to harm me. I am one of the lucky few who do fully recover from something like this. I assure you that delusions such as I explained can be just as real as they are bizarre. And it has been in my experience that no pill or therapy could alleviate the grip of my paranoia. It is very unfortunate that in many instances mental illness has resulted in atrocious acts of violence. I teetered on the edge of insanity for many years. And now have come to a place of understanding and peace. I am no longer plagued by paranoia or delusion. I intend to fight to improve the circumstances faced those who walk in similar shoes as I once did. We can only end this vicious cycle with understanding and compassion. The way to break the chain is not in condemning those of us that suffer from mental illness. It is in giving us a means and purpose for a better life. This is a point I will explain in more detail in future articles. ¶5 Off Meds I recently met with my psychiatrist. She and I meet on a monthly basis. Last month I asked her if we could start tapering back my medication, zyprexa. In that previous session she gave me a homework assignment. Something she wanted me to do to help her evaluate this issue and make the best decision she could. She asked me to write down all the pros and cons of going off my medication. And to also write down warning signs of a possible relapse. In the follow up visit that we had earlier this week we discussed what I had written and other relevant topics. I no longer experience symptoms of schizophrenia. There are many out there not as lucky as I am. They experience delusions and hear voices their whole lives. And some of them are quite successful despite being symptomatic. I read an article recently on the New York Times website. It was e-mailed to me by a friend. The article was written by a fellow schizophrenic. She is I believe a doctor and does research on the subject of mental illness. Her stance in the article was of the importance of having meaningful work. In her research she interviewed many people who had good careers despite having schizophrenia. I was struck by this article. I hadn’t yet understood how lucky I was to be symptom free. I misunderstood what it was to recover. It was in my experience that with work and understanding that you may dispense with symptoms. I thought it to be more typical among those who had fully recovered to not experience symptoms any longer. This article opened my eyes. I took a question to my psychiatrist in this last session. I wanted to know if it was not typical for someone to stop being symptomatic like I had. I should say that my symptoms ceased at a very specific moment in time. I am a paranoid schizophrenic and believed there were people who sought to harm me. This stopped at the exact point in time that I chose to educate myself on my illness. I should say that there was a process that brought me to a place where I could receive and accept what I did. Educating myself on schizophrenia was not an isolated incident but the straw that broke the camel’s back. I had struggled for years because I feared people wanted to cause me harm. I thought the only safe place for me was in jail. This fear I had was so strong that I attempted suicide to escape my fate. I brought my question of if it were atypical for someone’s symptoms to cease. She gave me a fairly general answer that left me with still more questions. This is not a bad thing. Mental illness is a tough subject to fully understand. We will discuss related matters in future sessions. We will come to understand each other better; this is the nature of psycho therapy. Her answer to my question was that symptoms similar to what I experienced can coincide with heavy drug use. And that in instances like mine discontinuing the use of drugs can help alleviate symptoms. Despite being symptom free my doctor decided to not begin tapering off my medication. In fact her standpoint was that she believed I was doing so well that she didn’t want to rock the boat. I guess she figures if it ain’t broke don’t try to fix it. I respect my doctor’s opinion. I am however, a little worried about the side effects of my medication. Zyprexa has in some cases been known to cause diabetes. I will continue to advocate for myself and discuss this matter with my psychiatrist. It is important that I not take a back seat in the treatment of my illness ¶4 Speaking out On March 15th I will have the opportunity to speak at the State House about mental illness. There will be legislators present as well as others struggling with mental illness. I have been in contact with the organizers of the event. And they have explained to me what they request I share with all that attend this day. It was requested specifically that I share some of the more positive experiences I have had in my recovery; as well as to speak of policy that I believe are unique to my perspective and experiences. My advice to our states legislators is to not continue to turn a blind eye and deaf ear to our states inmates that suffer from mental illness. I make this statement not purely out of emotion. It is not just because I have seen myself what mental health services are offered behind bars. It is more educated than that. The fact is that jails and prisons are the chief mental health provider in our nation. Over hospitals. It only makes sense to me that a portion of the attention mental health care receives would include the services behind bars. And yet it is not. In August of 2011 the Vermont State Hospital was flooded out by tropical storm Irene. It would never reopen. In response to it’s closing our state has radically revamped our mental health system. We are adopting a more progressive recovery oriented approach to mental health care. This “new” system is largely focusing it’s efforts on out patient care aimed at doing away with the old revolving door system. Our states response to a natural disaster has allotted over $40,000,000 of spending. This will cover in addition to the outpatient treatment I mentioned earlier improvements to existing hospitals like the Brattleboro Retreat. There has even been a plan to place an 8 bed interim hospital. Vermont’s legislators did not however spend a single penny of the $40,000,000 on improving the mental health services provided to our states inmates. The institutions that are already in place. The beds that are already available are not given the attention they deserve. You might not be of the mindset that I am. You may think that we are already spending enough money on housing inmates. You may also say that these are criminals who are in jail to be punished; they don’t deserve the quality mental health services that patients in hospitals receive. I believe that providing inmates quality mental health services is the only approach that makes sense from a sociological or financial standpoint. It is the only way to get rid of the current revolving door mental health system we have. It is my opinion that a little could go a long way if spent on improving mental health treatment in the department of corrections. The facilities are already in place. And so there is no need for any construction being done. The missing piece to the services puzzle in our correctional facilities is in my opinion peers. I think we could see dramatic improvements made to our mental health system with the addition of peer specialists in every correctional facility in the state. For those of you who do not know there is a peer movement within the psychiatric field. It is the very cutting edge of modern mental health treatment. A peer specialist is a person like myself who has recovered from a mental illness. They are able to bridge the gap between doctor and patient. Providing a level of understanding and empathy for the recipient of the mental health services that would otherwise be unavailable. I have received a lot of positive feedback from those I’ve spoken to on this issue. It seems that many people out there think prisoners deserve better treatment than they receive. I am encouraged to continue carrying this torch. And if I don’t change the minds of our states legislators on March 15th I will not give up. I will be a vocal leader in representing the people who are seemingly slipping through the cracks of a broken mental health system. I was at one point one of them myself. And so I know that they, like me, can make themselves into better people. I know that they are not at all a lost cause. ¶3 Life is hard I’ve heard people say to me “life is hard.” I can contribute 99% of the difficulty I’ve faced in life to my illness, schizophrenia. And so I’ve wondered what would make life hard without an affliction of some sort. I fully believe life is hard and think I am beginning to see this more clearly everyday. As I am still challenged every day to make my life all I want it to be without being symptomatic. I have decided for this article to ask people the question “what makes your life hard.” I have asked strangers, friends and people I have professional relationships with, this exact question. I received many different answers some were brief and others were more well thought out. I came up with a hypothesis of what makes life difficult before asking people this question. My thought was that life is difficult because we are all misunderstood. I will explain. If I was myself as a schizophrenic perfectly well understood by doctors or my family it would have not had nearly the effect that it did. I would have not, I’m sure, been suicidal or incarcerated as a result of my illness. Schizophrenia would have posed a far lesser problem in my life. We all have our unique aspects to our character that make us the individuals we are. This individuality leaves us isolated to a greater or lesser degree (depending on the person) and causes us difficulty. I will now share a some of what I learned from asking people the question “what makes your life hard.” I will tell you that different people have widely dissimilar takes on this question. There were those who pointed to external influences. They ranged from siblings who have mental illness to finances. One young man commented that “It’s not that life is hard. It’s that it takes patience.” I didn’t just simply ask this question. I asked the question and after I received an answer I explained other peoples answers and why I was doing this in the first place. One friend of mine answered that his difficulty was from that he was only one person. And then after hearing other peoples responses he added that things like his student loans make his life hard. In interviewing people about this matter my own attention has shifted. I am not looking so much at how things could have been easier for me. As I said earlier if people understood me better I would have not suffered so much from schizophrenia. I am now realizing that I am just as incapable of relieving my own pain and stress as those around me are. We all have the tangible things that make our lives difficult. And we all can do only so much on our own to carry on or be content. We have to share what burdens us with others. And unfortunately it seems this comes back to us. The expectations we put on ourselves are in part to fulfill personal needs. They are also to fulfill or to measure up to external influences. It is what we expect from ourselves and what others may expect from us that is largely to blame for difficulties we face. These expectations would not be there if we all didn’t rely on one another to get through life’s difficulties. The fact of the matter is that life is hard. I now understand that just a little better. Pain and hardship permeate throughout our society. And none of us can fully alleviate another person of their own personal or emotional burden. We have our own issues, difficulties and pain we must tend to. We need ourselves to share our emotional burden with those around us too. However, if we try we can help one another survive the difficulties, hardships and perils in life. I have seen in my life that it is this it’s self, helping one another, that is the greatest healer of all. ¶2 Pieces of My Life One goal I have in writing this column in Vermont Views is to show that people with mental illnesses are not so different. We have our good days and our bad. Just like you. We all have to accept ourselves as we are to be happy. This means we accept our short comings and imperfections along with our strengths. In my case it means accepting that I live a life that has been affected by mental illness. I have to accept myself as a person who is not all the things he sees and respects in other people. I can work on being these things but it will take time. I no longer experience symptoms of schizophrenia. I am not delusional or paranoid as I once was. How I came to this place is a story all on its own. One I will tell at another time. Having recovered from a major mental illness as I have gives you the ability to reclaim your life. I can not however, just put the horrible experience of my illness behind me. For one, it has kind of an after effect that makes your life difficult. I have as a result of my madness, been incarcerated. And I have large gaps in my work history. I also I feel I have a responsibility to improve the circumstances faced others who have mental illnesses. This takes precedent over having a 9 to 5. I see others who take on so much responsibility. I envy them. They are courageous and successful. I want to be those things. And I know that people say I’m courageous. They see me share my story and they see me overcome adversity. I see these things too. But I don’t want to stop there. I want these things that I have already and more. I have to learn that things like this take time. I have to be patient. The good that I am doing in the world will come back to me. I have to accept my circumstances and do my best each day to be happy with who I am. Its not always easy for me to be at peace with myself. I can be very stubborn and determined. I was at one time in my life a person who would ride his bicycle 100 miles in a day. This feat of endurance is called a century ride. And its the cycling equivalent of the marathon. The kicker is that I was a smoker at the time. This determination of mine helped me to beat schizophrenia. It may be why I am here today. It also serves for me to put unfair expectations on myself. I am learning to accept that even now that I am no longer symptomatic that schizophrenia effects my daily living. What I am doing in piecing together my life takes determination. And it is no less significant than overcoming the paranoia and delusion I once experienced. ¶1 Why I’m Here I was diagnosed with schizophrenia in 2007. A full 12 or 13 years after I believe I first experienced symptoms of this illness. And 5 years after I began believing I had a rat in my brain. I have since being diagnosed with schizophrenia been homeless, suicidal, incarcerated, committed and years have gone by while I lived in group homes. My story of recovery is long and convoluted. It will take time for you to fully understand my experience with this illness, schizophrenia. Welcome to My Side of Madness. I am now recovered and am proud of the work I have done to have beaten this illness. It was hard and unfair that I face such circumstances. I am now a different person than I was when I set out on this journey. I have had to reinvent myself to make the most of my circumstances. And it was this act of deciding that I accept myself as a schizophrenic. This act allowed me to not only overcome what I was faced with but see that I could accomplish even greater things. The strength I gained from this adversity has led me to know I must be an advocate for others like me. The doctor whom diagnosed me could not have done me a greater disservice. He did not tell me anything about schizophrenia. And he did not explain to me or offer me the services I now understand I need to help deal with my illness. Shortly after my diagnosis I attempted suicide. I believed that there were people who would at an uncertain point in time come and harm me. I attempted suicide because I was afraid. I first attempted suicide by cutting my wrist. I could not cut deep enough to cause my own death. I then, later that day, tied a noose to hang myself from, in my dad’s garage. My parents were scheduled for an engagement that night. I believe it was to serve food at a soup kitchen. My dad sensed something was wrong with me and called it off. He later found the noose I had tied. That night I was brought to the emergency room at the Fletcher Allen Hospital in Burlington. This would be my first hospitalization. The circumstances faced those that are admitted to such hospitals is unfortunate. The demand for beds is high. And so the patients are often get rushed through. The doctors decided I was ready to leave the hospital after about 3 weeks. They never even found out why I attempted suicide. In fact it would not be known that I believed people were out to harm me for years to come. I was still far from ready to leave the hospital. I was very afraid. I was very confused. In just a day or 2 after leaving the hospital in Burlington I made a second suicide attempt. I was staying in an outpatient facility of which I don’t remember the name. I snuck off grounds and headed towards where I knew of a very high cliff along side Lake Champlain. It was fairly late at night and too dark for me to find the cliff. And so I went back to the outpatient care center I stayed at. I saw that night that no one came after me. Incidents like this slowly led to me awakening to see myself as being severely ill. It was through personal realization and understanding that I eventually recovered. There are too many stories of people who are affected by illnesses like schizophrenia and lose their lives. And it is all too common, in my opinion and experience, that a lack of communication exists between doctors as well as other mental health professionals with their patients. I could have found that cliff that night. Instead I turned around to go back to the outpatient center. I could have ended my life. No one made the efforts necessary to make sure I would be safe before discharging me from the hospital. I am here so that others need not have experiences similar to the one I just explained. I am here because I see a need for me to speak out and be heard. http://www.breathebrattleboro.blogspot.com/ shapeimage_2_link_0
My Side of Madness is written by columnist Matti Salminen  © 2013 This work is copyright all rights are reserved by the author Matti Salminen Information About The Columnist... “I am a recovered schizophrenic. I came to Brattleboro by way of the Retreat. In fact, I was evacuated from the Vermont State Hospital after tropical storm Irene and brought to the Retreat. I have been in town now (not counting time in the Retreat) since December of 2011.” To contact the author by e-mail: m.f.salminen@gmail.com mailto:m.f.salminen@gmail.com?subject=My%20Side%20of%20Madness%20Column shapeimage_3_link_0

My Side of Madness