The Illness and the Oddessy

Carolyn's Story about her experience with Schizoaffective Disorder

Knowing where to start is difficult. Do I start with my childhood? With my symptoms? With my abusive marriage? With my marvelous and life-saving therapist? Or do I start by telling where I find myself today? Yes, I believe I will start with today. No, my life is not perfect now. Far from it. But compared to what it was, and the doctors' prognoses of what it would become, I have been blessed indeed.

I just took a leave of absence from my part time job of 8 months in order to help take care of my father, who has Alzheimer's. This job consisted of sacking groceries, cleaning restrooms, and dumping garbage for one of the Midwest's major chains of grocery stores. Not exactly a high-profile or high-earnings job. In fact, I started at minimum wage last December. I had been searching for the right job, one that was not high-stress. One I could forget about when I went home at the end of the day. And this one fit the bill.

I had behind me what seemed like a long history of disappointing attempts at employment. I would work anywhere from 2 days to 2 and 1/2 years, quitting each time because of the symptoms of schizoaffective disorder. Most jobs lasted an average of a few weeks. Then I would become overwhelmed by the tasks assigned to me - using a cash register, memorizing a menu, learning where things were in a stockroom, having to file medical documents in a certain order, counting faxes, and the kind of tasks that are not assigned, like fielding unwanted sexual advances.

During and between these periods of employment, I was in and out of the hospital regularly, like clockwork, which left a lot of lost jobs and lost time to explain on my resume. Still, I pressed on, determined not to give in to the plague of schizoaffective disorder. And I wasted a lot of time trying to find jobs that my family would approve of. Doctor, Nobel Prize winner in literature, noted Christian speaker, scientist, and professor -- I assumed those were their aspirations for me. Of course, I never set my sights that high even before my real problems began. But in 1995, I had worked for 12 years as an administrative assistant making $41,000/year. We were all happy with that. I mean, after all, I made twice as much as my husband!

I had a brand new 4-bedroom, 2-story, brick home and had been married 10 years. I had a new red sports car that I loved to drive. Every day, I ran 5 miles and lifted weights twice a week. I weighed 110 lbs. I read fiction voraciously, often reading a book a day, and usually had 4 or 5 books going at the same time. I worked 40 hours a week and was writing prize-winning poetry. I was doing paintings for commission. Little Miss Perfect Life. Or so it must have seemed to others. Neither any person nor any life is perfect.

My marriage had always been far from perfect. That maybe central to my initial deterioration, but it is not central to my present success. So, I will make that chapter short. I married at 24 to a man I met in college. My younger sister had just married, so I think I rose to the challenge and chose to get married also. Tim and I didn't know each other very long before we became engaged. And married. He was very controlling from the beginning, although I welcomed it at first. I was away from home for the first time and was used to someone else making all the decisions for me. He was happy to do so, and I was happy to let him. We both got our bachelor's degree. But before long, he wanted all my money in his bank account. He wanted me to come straight home from work. I was not supposed to eat with any male co-worker. He didn't want me visiting my family, who lived about 15 miles away. He began to spend all our extra money on himself. And here was the big shocker -- he began to cross-dress. Not just once in a while, but all the time that we were at home together. I mean, he shaved his hands and legs and back, he wore pantyhose and dresses and high heels. He wore a wig and makeup. And I told no one. Not even my precious little sister.

I lived with this for years. In 1995, we had the house built and moved in. Both of us believed on some level that this endeavor would strengthen our marriage. Some desperate couples have children hoping it will save their marriage. Thank God I didn't do that! We had never fought verbally, but he would often say demeaning things to me when we were alone, and later in front of co-workers. "I would teach you how to fold my socks right, but I know you wouldn't remember how." "Of course we aren't going to hang your paintings in our house -- I want something nice on the walls." "Can't you even cook my breakfast right?" On and on. It was in this new house that my slowly simmering symptoms came to a boil.

When I was a child, at age 8, I started cutting on my knees and the palms of my hands. With glass and metal from the school playground. If anyone asked me about the cuts, I said I had fallen on my hands and knees on the rough asphalt. Why did I start doing this? I don't know. Then at age 11, the devil appeared out of a whirling tornado, whispering evil things in my ear. I remember having to lie down on the bathroom floor or my bed or wherever I was, so I wouldn't fall. The devil said, "I am the devil! You have sinned! You have done something wrong, and you are going to have to pay for it!" These words never varied. The devil started talking to me periodically. Not every day, but just at odd moments when I least expected it. This continued off and on throughout my teenage years. I never told anyone till many years later. After all, I went to church every Sunday. What would people think, especially my parents, if they knew I had this personal relationship with the devil!

Also in my teenage years, I would do things to hurt myself physically. I would catch a wasp and let it sting me -- exquisite pain. I would bang on my knuckles with a hammer. Very rarely, I would cut myself. I virtually stopped eating and suffered the hunger pains. I became bulimic for 2 years. Around age 16, I began to be depressed. Very depressed. I moved back to a small bedroom at the back of my parents' house and started listening to heavy, crushing rock music at night. I paced back and forth, back and forth, in the narrow room. I would cry myself to sleep every night. I remember one dark night even taking my father's loaded pistol and holding it in my mouth for about 30 minutes, trying to find the guts to pull the trigger. Some part of me hoped I would be found like that, and someone would help me. I didn't know to ask for help. Finally, after many months of this, my mother entered my room while I was crying. She asked me what was wrong, and I didn' know. I didn't know what depression was. I just knew I was in terrible pain inside -- mental and emotional pain -- and nothing seemed to stop it for long. Loving mother that she was, she immediately took me to our family doctor, and he knew what was wrong. He gave it a name -- depression -- and prescribed Tofranil. After a few weeks, the Tofranil began to work. The gray world began to have some color again. Then I grew angry with my doctor and decided to stop the medication and never went back to him.

At 18, I entered a local university, majoring in fine arts. And I entered the world of mania for the first time. It was wonderful! I only needed a very few hours of sleep each night. I stayed up studying furiously. I began to write as I had never written before -- marvelous poetry. I started composing music and heard grand symphonies in my head. My paintings became works of creative genius. My head was spinning with all these things; my thoughts raced to keep up with my senses and sometimes vice versa! I felt as if I could be an instant master of anything. And I was making an almost 4.0 GPA, so who could find fault? But there were other more disturbing things that were happening. When I was driving on the freeway to college every day, the other cars on the road began to move jerkily, in slow motion. Like a movie advancing one frame at a time. My paintings began to take on symbolic meanings to me. I became obsessed with painting self-portraits, some grotesque. I began to isolate myself. I broke up with my boyfriend. I had no girlfriends. The depression came back full force. That was the worst part -- the depression. Gradually, the mania ebbed and the low moods took over, but I sought no treatment.

After four years of college, and still without graduating, my father said it was time for me to pay my own way in the world. So I quit for a year and went to work at a small insurance company. I wore black almost every day of that year, long before it was fashionable for women to wear black during the day. This made a statement -- I was depressed. Again, now that I look back, I believe I was asking for help. Hoping that someone would notice my odd attire and ask questions, then I could pour out my pain to them and they would know what to do about it. Fantasy. No one every asked, although I'm sure they must have talked behind my back. That strange girl who mopes around the office. I was still very isolated and I wanted it that way. The depression was killing me inside. Then there was an unexpected turn of events. Mother found me a scholarship at a small university miles away from there. And I went there to get my degree.

It was at Howard Payne University in Brownwood, Texas, that I met my husband, Tim. We married and I finished getting my B.S. in Applied Art. We moved back to Fort Worth and he finished college. The depression left. I had found true love and fulfillment, or so I thought. At least I wasn't isolated anymore for a couple of years, at which time Tim effectively isolated me from everything but my job as administrative assistant. It was a challenging job. I did all the usual secretarial and office duties plus many more demanding tasks, like yearly budgets, and supervising, and handlingmillion-dollar accounts, plus trying to please a demanding departmental director. But I did it well and my salary rose quickly, year by year. I was very proud of myself. But I was very unhappy at home. Timâ?Ts cross-dressing had become a point of contention. When I asked him to stop, he told me that he couldn't. He admitted that he loved the clothes more than he loved me. I should have known then that it was over. He began to sexually abuse me -- demanding sex at all hours of the day and night. Forcing me into sexual acts that were physically painful and abusive, not to mention sexually unfulfilling for me. I longed to escape. Every morning, I privately knelt before God, begging to be rescued. About this time, we built a new house and moved. That was supposed to "fix" everything. It only made matters worse.

At 34, in the fall of 1994, I had a hysterectomy because of painful endometriosis. While I was at home that six weeks, recovering, strange things began to happen again. The devil came back. Only this time, he brought a room full of demons with him. In the mornings, I would awaken frozen stiff with fright. As if my heart had been dropped into a vat of liquid nitrogen. The devil would be standing at the end of my bed, and his demons would hold hands and dance around the bed, singing songs to me. Mostly it was gibberish in harsh whispers. But what I could understand was more of the old tune -- "You have done something wrong, and you are going to have to pay for it!" This continued for several months.

Meanwhile, the mania returned. I began to sleep only 2 hours or less a night. I spent every minute sewing clothes for myself -- this was the turn my creativity took this time. Sewing had never really interested me before, but now I was obsessed with it. Finally, after not sleeping for 2 weeks, the devil came to me with a deal. He said, "I can show you how to kill your husband. That is what you will do to pay for your sins, just this one little job for me. Stay home from work tomorrow morning, and I will tell you how." So, you better believe I stayed home from work that morning! If there was a way to get rid of Tim, I had had my fill of him. I wanted to get rid of him. I never considered getting a divorce -- I knew God didn't approve of that. In my state of mental upheaval, I didn't think about the fact that God also disapproved of murder. But that morning, I waited. And I waited. The devil didn't appear. He stood me up. But it occurred to me that it was time to get help. I was manic, I wasn't sleeping, I was hallucinating, and I wanted to kill my husband!

Naively, I really thought that all I had to do was go to a psychiatrist and admit these things, and he or she would instantly cure me. So I sat down on the bedroom floor in the midst of the demons one morning and told Tim a half-truth. I couldn't say, "Darling, I am going to kill you." So, I said, "Darling, I am going to kill myself if you don't get me to a doctor. Today." We were working at a large medical research and treatment facility, where many doctors were readily available to employees. Tim made a few calls and got me in to see a doctor that morning. After he left her office, I explained to her what was going on. I told her that Tim was cross-dressing and sexually abusive, although that was not actually salient to the point I was making. Just something I wanted to get off my chest, because I had never told anyone. I explained my history of hearing voices and major depression, and how things had progressed to the point where I couldnâ?Tt sleep and demons were dancing around my bed and singing to me. I told her that I was open to suggestions as to how to kill my husband.

Immediately, Dr. Smith (not her real name) said, "You are bipolar. You need treatment immediately. I will start you on Trilafon and ask Dr. Hall (not his real name) to see you this week." So began the odyssey of diagnoses, doctors, medications, hospitals and treatments. And I thought all I had to do was to reveal the nature of my illness, and the doctor would know what to do. Anyone who has a severe mental illness knows the true nature of both hope and despair. Anyone who has seen a psychiatrist also knows hope and despair. There are so infrequently any quick results and almost never a cure.

Within a year, I was divorced. Tim said he had talked to his friends about it and decided he didn't want to stay married to someone who was mentally ill. Good riddance. I tried to commit suicide with an overdose of Trazodone, and it didn't work. I was arrested twice, once for having a firearm and intending to use it on myself. Once for sending my psychiatrist a fax saying I intended to kill myself. He refused to treat me again after that. One doctor ordered ECT treatments. I took 19 treatments, sometimes 3 a week, and they failed miserably. I would never recommend ECT for anyone. It destroyed almost all my memory for months, and part of my memory was gone for years. I was left with no math skills. I didn't know the names of people with whom I had worked 10 years. I didn't know my own telephone number. Within a little over 2 years, I had lost my new home as well as my job. I moved home with my parents and received a small monthly disability pension. So I also lost my independence, which for a while seemed the biggest loss of all. I had asked God to rescue me from Tim. And so He did. Now I needed rescuing from mental illness. Eventually, He did that too. And through mental illness, I learned a great deal about compassion and suffering that enabled me to have a deeper understanding and empathy for others.

From the summer of 1997 through the summer of 1999, I went from one hospital to another. I would improve just enough to go home, then I would become suicidal again. The hallucinations never really stopped. Voices, bodiless people laughing in my head, delusions about dead people in the closets, a fractured sense of what was happening around me, and sleep, sleep, sleep. The depression only grew worse, no matter what antidepressants I took. Two different psychiatrists told my parents they could do nothing more for me, that they should send me to a state hospital for longterm care. About that time, I found a new psychiatrist, Dr. Sunkara. And a new therapist, Margaret Summy. The combination of the two turned my life around, but it didn't happen overnight. Dr. Sunkara was convinced that I had schizoaffective disorder or schizophrenia instead of bipolar disorder, and he was willing to try any number of medications, singly and in combination, to stop the devastating symptoms. For depression, I tried Prozac, Paxil, Zoloft, Trazadone, Effexor, Tofranil, Wellbutrin, and Lexapro, and probably others I donâ?Tt remember. First for bipolar disorder, then for schizophrenia, I took Lithium, Exalith, Depakote, Risperdal, Clozaril, Seroquel, Geodon, Zyprexa, and Abilify. Plus a number of anti-anxiety medications that I can't recall. The antidepressants all worked to a degree, but none completely stopped the depression until I tried the Zoloft and Wellbutrin. And later, I switched to Wellbutrin and Lexapro when the Zoloft stopped working. And none of the antipsychotic or mood stabilizers worked until I tried Zyprexa. Meanwhile, I was hospitalized 18 times.

Zyprexa was both a miracle and a medication I grew to dread. The first time I went on it, I gained 70 lbs in a few short months. I ate 24 hours a day, especially in the middle of the night. Whatever I could get my hands on. I was ravenous. It also made me sleep about 16 hours out of every 24. But it let me see a beautiful world again. I could go out in my back yard and look at the trees, the grass, the sky, and they were all bright and colorful and almost hyper-real. It took away the psychotic thinking. I still had problems -- socialization problems and job problems. I couldn't read books anymore -- I couldn't concentrate. Nor could I watch movies or listen to a sermon or enjoy TV for the same reason. So I concentrated on writing in my diary and surfing the Internet during my waking hours.

Then there was Margaret, the first therapist who actually helped me. She was my therapist for about 8 years, though less and lessas the years went by. For one whole year she listened to me talk about suicide. I studied suicide on the Internet. (I couldn't read a book, but I could read the short passages online.) I wrote about it. I thought about it constantly. I asked Margaret how I could stop, and she said that sometimes you have to go through something to get to the other side, that there may be no way to avoid it. And that's what I did -- I finally came out on the other side. Since then, I haven't thought about suicide again. Margaret always helped me see the positive side of things, too. Whenever I complained about something, if not overtly optimistic, she would at least say, "Just wait-- things always change." She never told me to live life one day at a time. She taught me to value each day for what it brought. And there's a difference. Simply plodding through the days one at a time is rather fatalistic. But valuing each day as a gift makes life worthwhile.

Anyway, after all of this preface, I will come to the successful part -- where I am now. I can work part time. I can read and watch movies and watch TV. I can go to church and listen to a sermon. Zyprexa put me on the right track, then I switched to Seroquel because of the weight gain. I lost 50 lbs. I took Seroquel for a couple of years till it stopped working, then I switched to Geodon. Geodon gave me insomnia, so I went back to Zyprexa and regained all the weight I had lost. Recently I changed to Abilify and hope it works as well as the Zyprexa, without the side effects. I do hear music 24 hours a day after stopping the Zyprexa, and I am waiting expectantly for that to stop again. But considering the awful psychotic weeks in the hospital and the death grip of depression, I am so much better. And there is no reason to think I can't continue to improve. I also had the prayers of many concerned friends, and I believe God has answered those prayers.



   Copyright 1996-2004. All Rights Reserved.