Schizophrenia Diaries

Cathy Paxton’s Story

My journey from hopelessness to hope started 15 years ago.

Circumstances beyond my control led to my mental break. We were living in a 600-square-foot house with our three kids, who were five, two and four months. My husband, Chris, had been told he was losing his job. I went on an overnight driving trip with the kids, which ended with the police taking me to the hospital. I was admitted to the psychiatric ward, diagnosed with paranoid schizophrenia.

The situation seemed hopeless. I was told I couldn’t work; I was also told that I couldn’t have the baby in the hospital. How was I to feed him? That’s when the church community and God took control. Marion, our priest ’s wife, helped Chris wean the baby. Wow! I couldn’t even feed my children. How would I get well with these major problems?

Offers of babysitting came; casseroles appeared at our front door. I was released near Christmas. Chris and I decided I wasn’t well enough to purchase Christmas presents.

Just before Christmas, a knock came at our door. It was Bill and Mary, owners of a Montessori School my son attended. They came in with five boxes filled with food, including a turkey, as well as diapers and toys. We would have a real Christmas after all. We tearfully accepted what was given to us and had a fantastic Christmas.

How did I get better? I began to work with a professional fitness coach, who showed me how to lift weights and increase my walking. I found that this exercise program increased my mental wellness.

Now I am working! Yes, hopes and dreams do come true!

Cathy Paxton

Mine is a good news story. Good news, because there has been in the past too much pessimism and bad news about the illness of schizophrenia.

Let me first give you a bird’s eye view of the severity of my illness for the first six years. After finishing Grade 10, I began to have difficulty concentrating, and went from an A student to a barely passing student. I began to have a relentless buzzing in my ears, day and night, soon to be replaced by voices of angels. I vividly remember my first psychotic episode: the skies opening right above me and Satan sitting beside me laughing at me. Faces of people were all distorted. They appeared like apes. They too were talking about me, without moving their lips, and laughing at me. I was in a state of total terror. Later, a peculiar surge of power came into my body like lightening. I began to feel powerful. I thought I was the Messiah sent to save the world. But I was confused as to how to go about it.

My family found it hard to communicate with me because my talking made no sense. I could not follow a conversation. There was no way of reaching me.

I went through a variety of medications, always in very high doses. Although they reduced the severity of my symptoms, they immobilized me with side effects. I was a walking Zombie. Walking was stiff. I’m told my face was expressionless and I drooled. Wouldn’t that scare anyone?

I had ten hospital admissions over five and a half years. Life was empty; there was no enjoyment. I was spending much of the time in bed, unable to take part in any household activities, doing nothing much beyond eating and sleeping.

All the friends I had at school were not to be heard from again. I was afraid of being called crazy or a nut. I didn’t know what to tell anyone about my illness, how to explain what was happening to me. I was slipping, and losing all hope, and wanted to end it all-and I made suicide attempts. I’m sure you get the picture!

My recovery didn’t begin until I was stabilized on an atypical antipsychotic, clozapine, along with antidepressants. Once stable and free from any positive and negative symptoms of schizophrenia, I was developing enough insight to move on with my life.

As my thinking and concentration improved, I could read again, and carry on an intelligent conversation. I began to work hard on improving myself…My first step was to catch up with my formal education because I had lost 6 years of education… I enrolled in the Redirection through Education program at George Brown College. It felt great to be back in the mainstream, I had a student number and I felt part of the student body at the campus. There was no intimidation, there was no stigmatization. Next I had extensive aptitude and skill testing to learn that my interest lay in the Health Care field. I then took a Health Care Aide course. Studying was really hard, I had to spend hours in learning, things didn’t come easy… I remember telling my parents when I was preparing for my exams that I was never going to do another course. But passing that course, with honours too, was very rewarding and gave me more confidence in my mental capabilities.

In January last year I was hired to work with the Assertive Community Treatment Team (ACT) of as a Peer Support Counsellor. Engagement is the first crucial phase of ACT care and critical to the final outcome. As Peer Support Counsellor, I consider this to be one of my main roles-to facilitate engagement of the client. I have been there, I know what it’s like to have schizophrenia. I find that the comfort and trust level of clients is high, and they are more willing to talk to me. What is amazing is that often I may not have even disclosed about my illness yet, but a client knows that I have schizophrenia.

So my recovery and employment are a balancing act. I have to pay attention to my health. I realize that I have to take my meds for the rest of my life to correct that chemical imbalance in my brain. No different than a diabetic needing insulin, who has to take it for the rest of his life. I have to take charge of my illness, and that is what I impart to my clients…I continue to need at least 9 hours of sleep. I can only participate in limited amounts of social activities, and I have learned to say so… The scope of the job is exciting. No two situations, no two clients are alike. That is what is most challenging. There is ongoing learning which is mostly experiential, hence a place for personal growth. I also want to stress the fact that my illness, my recovery from it, and my employment are very much intertwined.

Written for Internet Mental Health, August 1995

My illness became apparent when I was about 19 years old. I was depressed as a teenager but didn’t have any really psychotic symptoms until I was in my second year university and then I stopped going to classes and started daydreaming all the time and sleeping all day just waking up for meals. I was living in a fantasy world where I was a super special person and yet I was depressed because I couldn’t fulfill this role as a super special person.

One of my girlfriends suggested that, since I was missing classes, I go speak to the women’s counselor so I spoke to her and told her my symptoms and she told me to go see a psychiatrist at the university. I went to see him and I told him all my symptoms: I felt like people started looking like robots to me, my body seemed to be alien matter to myself, I seemed to be like from outer space somehow. He gave me some pills, some antidepressant pills and some antipsychotic pills but he didn’t give me any diagnosis at the time. He just wanted to see how my illness went on.

This lasted about two years and I was quite suicidal for that period of two years because I didn’t know what was going on and I was becoming more and more depressed as I could see my career slipping away from myself and living in this world that I had created and not having any idea what I was supposed to do with my life at that time and I was very discouraged because nobody gave me any hope.

I ended up in hospital twice while I was actively suicidal and I finally decided that some of the medications weren’t working and I thought I would try another approach so I went to an orthomolecular psychiatrist. He started me on niacin and vitamin C and it’s either coincidence or it really worked but for some reason or other I got better within about a month or two and I was no longer depressed. I stayed on the vitamins for about five years and at that time I wasn’t taking any medication at all. I either had a wonderful remission or the vitamins were working. I don’t know to this day if they work but I still take them.

I graduated in 1988 and then the year following I started noticing my depression coming back slowly but surely as I couldn’t find a job and I was hanging around my apartment all day. I did find a job and started working at it part-time but then I started hearing screaming and becoming very agitated for no apparent reason while I was getting ready for work to the point where I couldn’t go to work any longer. I had to leave my job at that point and I went back to a psychiatrist and he started me on Prozac and that helped me a little bit but it didn’t help the psychosis part until I ended up in the hospital another time after I was in a day program, I sort of became catatonic and they started me on haldol.

I was on haldol for several months but I had several bad side-effects from that so I started on loxapine after that and that seemed to work but I was still a little bit suicidal and not really depressed at being suicidal but it was more of an elated feeling where I wanted to become an angel or something very special again, so the doctor said, "Are you depressed?" and I said, "Not really but I still want to die and I wish God would let me die by some natural cause."

I went to another day program and that helped me quite a bit. I was in that for four months and they taught me how to live on a budget and banking techniques and social assertiveness techniques and I found that very helpful because that gave me a reason to get up in the morning, even though I couldn’t work I could go to this day program. I was in the hospital a few more times because I was suicidal again, but then one of my doctors left and I had to find another doctor, so I found my present doctor and continued taking the loxapine but then tried risperidone for a few months.

That seemed to work but I seemed to be a bit flat on that so I went back on the loxapine and vitamins and I feel fairly good today. I’m not ready for looking for a job but I may start looking for volunteer work. At least I have the hope element in my life. I know that all my suffering was for a reason and I have tremendous hope for the future. In the limiting condition that I have I still feel very optimistic about things and I found out through one of my doctors about financial aid, or GAIN, and that made a tremendous difference because I was not able to work at the time and having the money coming in allowed me to keep my apartment and I found that very helpful. I have since moved home with my parents because I became too lonely but I look forward to moving out again when I feel a lot better.

by Donald Evans

My name is Donald Evans. I’m 39 years old, and I’ve had schizophrenia since I was 25. I live in the Atlanta area and grew up there. I also have an identical twin brother with schizophrenia. He got sick at age 21. I have another brother (younger) with severe epilepsy and a mother with bipolar disorder. My dad and one sister, who is the oldest sibling, seem to be the only “normal” people in the family.

I was thinking to myself the other day that I’ve suffered through fourteen years of pure hell; that I feel like I’ve lost a large part of my life to schizophrenia. I feel like these years have been taken away from me by this illness. Sometimes it feels like I’m trapped by this spirit so strong inside of me that I don’t know what it is at times. I was raised fundamentalist in the South, where people sometimes associate unusual behavior with demons and the devil. I don’t want to think my problem is demonic, and yet I don’t want to think it’s mental — but it is.

One thing I have to accept is that I have a mental illness; that doesn’t mean I’m different from anybody else. But I think sometimes that if I hadn’t become ill, I’d be working full time somewhere.

My illness started in 1985 when I was working in Houston, Texas, driving a truck for some soft drink companies and serving machines. I began to feel very paranoid about the Teamsters Union, and thought that they were threatening me and going to hurt me. I might have misinterpreted things, but the paranoia and fear felt very real. Shortly afterward I started to hear things like “I hate your g_damn guts,” “You’re going to die,” etc. I also had religious delusions, like thinking I was Jesus.

I was hospitalized in Atlanta a couple months after the symptoms started. This was to be the first of about 30 to 40 hospitalizations I’ve had in the last fourteen years. I’ve also been put in jail for symptoms of my illness. Fortunately, in the last few years I’ve been on Clozaril (the highest dose possible), which hasn’t controlled all of my symptoms, but worked better than other antipsychotics. I take about four other medications too.

I was put on outpatient commitment because of an incident that happened about a year after getting schizophrenia. I experienced an auditory command hallucination that told me to get a gun and kill myself. However, I shot myself in the chest and didn’t die. It was at this point that I was sent before the county probate judge and was ordered into treatment (outpatient civil commitment). The judge required me to attend day treatment on a daily basis and take medication regularly. The judge offered to help me obtain a lawyer/advocate that would help me follow through with the outpatient commitment plan and help me report progress back to the judge.

The day I first went to see the judge, I was nearly a vegetable from the illness. I hadn’t been participating regularly in treatment, including taking medication. I could barely function. At the first review in front of the judge a year later, when the lawyer saw me, she told me that I looked a lot better. I continued to get better over the next few years. After about five years, I think, I was participating in treatment so regularly that the outpatient commitment order was discontinued.

Almost all the time I got sick I ended up in the state hospital, but there was one time I remember where I ended up in jail. A voice commanded me to go to a part of Atlanta to look for Dorothy Stratten, and I was arrested for criminal trespassing at a hotel. Instead of taking me to the hospital, they took me to the county jail, where I was beat up twice by other inmates and taken advantage of.

The outpatient commitment order helped me a lot. It prevented me from getting into trouble and got me on a regular schedule. I knew I had to take medication and become involved in some type of daily activity to deal with the voices and paranoia. Since I’ve been on Clozaril and the other medications, I’ve been able to work part-time and attend day treatment. I’ve worked at a restaurant now for about six months, which is about the longest time I’ve held a job. The voices don’t tell me what to do anymore. I ignore them and tell them to go to hell and leave me alone, especially if they’re bad voices.

As far as advice to someone facing an outpatient commitment, I think the best thing for him or her to do is to use it to become educated. They need to realize that they have a chemical imbalance; that they DO have a brain disease. It’s not just their fault — they were genetically born with it, or that it came on through age, or whatever.

If people don’t take their medication, they’re going to get into trouble. As a person who’s had bizarre thoughts and feelings, I know what people are going through — I’ve been through the same thing. Some people who deny that they’re ill become either homicidal, suicidal, or both. I haven’t been homicidal but I’ve been suicidal, and I got help.

I learned that when those feelings started, it was part of my depressive part of my illness, and I needed to seek help before I got worse and reacted again. I learned this largely through outpatient commitment, and the education I got through treatment. Sometimes outpatient commitment is needed — I would say in limited circumstances — it would be based on what the person did or what they do.

I hope that people realize that individuals with severe mental illnesses need help before they get into trouble and commit a violent act like homicide or suicide. To wait until a violent act occurs often can be too late, and isn’t a compassionate approach for people who have severe mental illnesses like mine.

Written for Internet Mental Health, August 1996

When I first became ill is hard to say. There was no dramatic change in personality or behaviour. I was always quite shy and withdrawn throughout my teen years and early adulthood. When I turned 27, I moved from western Ontario to central British Columbia. The B.C. economy was booming and it was easy to find a job as a draftsman with a large utility company and I was doing quite well. For the first year I travelled extensively throughout the central interior, only home on weekends. I made a few friends, and even found a girl to fall in love with.

As the relationship grew she moved in with me and my roommate. I was still travelling a lot and only home on weekends. I had been a casual marijuana smoker and, with my girlfriend and my roommate, experimented with cocaine. I gradually became depressed and slept a lot when I was home, and withdrew even more. I became untrusting of people and even thought my girlfriend and roommate were having an affair behind my back, which turned out to be true. When I found this out to be true, the house broke up and we went our separate ways.

I thought I had a good reason to be depressed and paranoid, however the depression lasted too long and in time I couldn’t even work. After about 1 year of breaking up with my girlfriend I started to seek medical help, but the availability of services was limited and I couldn’t express my thoughts and feelings well enough to be understood. I was always having thoughts about my girlfriend and roommate and how I caught them. I was very depressed and unable to sleep.

Finally my parents came and “rescued” me. I went on sick leave from work and moved in with them. In the ensuing 6 months I attended an outpatient program at the local hospital and gradually started to feel better. With the introduction of Stelazine (trifluoperazine) (20mg/day) I quit ruminating about past events, gained trust in people and lost the depression.

When I recovered enough, I was discharged from day care and moved back up north with a reduction in medication and not knowing what the diagnosis was. After being home for a while and receiving counselling at the local hospital, I learned my diagnosis was schizophrenia and thought I was an “axe murderer type guy”. Not wanting to be schizophrenic I quit the medication; after all if you don’t take the medication, you don’t have the disease. This only lasted about 6 months, then I was hospitalized and treated for depression. The treatment for depression was 1/2 way working, however my thoughts were very jumbled and then I didn’t trust anyone, not even my therapists. My thoughts were like listening to 10 different radio stations that weren’t quite on the station.

Eventually I was prescribed Navane (thiothixene) (2.5 mg/day). I filled the prescription and one day a few weeks later when I was trying to solve a tough problem at work, I took one of the pills. The results were very dramatic. Within 45 minutes of taking the stuff my thoughts cleared up as if by magic. I wanted more of the stuff but I didn’t know how much was a therapeutic dose and my physician wouldn’t prescribe a higher dose. The local psychiatrist didn’t believe the schizophrenia diagnosis. Over the next 3 years I was running on about 1/2 speed and hospitalized on average every 9 months.

Eventually the economy became bad and I was laid off. I moved in with my parents and began to see a local psychiatrist. The diagnosis was schizophrenia and I was prescribed Navane (20 mg/day) and felt as though the weight of the world was lifted off my shoulders. I hadn’t had anything to do with street drugs for about 4 years now and was warned that involvement with them or alcohol would cause a worsening of the symptoms.

I attended Okanagan College and earned my grade 12 over again and first year university. Eventually I met a wonderful woman, fell in love got married and moved to Vancouver. I found work as a draftsman and attended night school. The medication was eventually changed to Risperidal (risperidone) and I felt even better. It had been 12 years from the onset of the illness till then. I spent 6 years living in hell without proper diagnosis and now I am fully recovered. I have earned an honours Diploma of Technology and am about to start a wonderful career.

It is now 1996 and without the support of my loving wife, psychiatrist and medication I would not be where I am today.

The keys to recovery are:

• stay away from street drugs
• take your medications as directed
• proper counselling and therapy
• correct diagnosis