I’m a test case for the success of psychotropic medicine. Most psychiatrists would attribute a predominant portion of my recovery to my dedication to a strict diet of psych meds. Other than the sole hospitalization I never went off meds. This was not an easy path and I do attribute a large portion of my recovery to having the right medicines prescribed to me and for sticking to them. Staying with this medical regimen was not easy and it is easy to understand why many do not stick to it. Side effects can be extreme. However, I don’t ascribe a biomedical view of my disorder to the extent that most of the medical community does. I believe the situation is more complicated than most doctors will admit.
I was first prescribed Clozapine in late 1992. I was well into the most psychotic phase of my illness which had landed me in a hospital for the first time. This was an election year and the murderous impulses of my parents had a direct bearing on whether the Dems or Republicans would triumph. Clearly, things weren’t right. I spent over a month (and later I found out over $100k of my own money) for a stay in a small private hospital. The whole charade I treated as a joke. I clearly had no insight into my illness. As long as I had such momentous delusions it fed a sense of high purpose. When this facade began its collapse my spirits descended and the reality of my self-imposed exile took root.
The answer at this point was Clozapine. The first of the so-called atypical antipsychotics was still judged the best despite copious serious side effects. I was given the choice of a locked ward at Columbia or a halfway house upstate. I chose the latter. Slowly the drug was titrated and as the dosage increased so did my side effects. The immediate reaction was severe lethargy. It took a great effort to keep myself awake throughout the day. Most days my jaw lay open with a consistent pool of saliva overstepping my lower lip. I took a quick foray working a cash register at a hardware store that didn’t last. As my classmates were pursuing legal and medical degrees this really ate at my self-esteem.
The system worked for me. I moved on from the halfway house to supported housing to a Section 8 apartment. Over this time I completed my Bachelors Degree and went on to a Master’s degree in Library Science. Gradually I ascended to a position where I took no government help. I even went on to a management position at an academic library. While my spirit rose and waned the consistent aspect was I took my Clozapine. Antidepressants came and went (my full diagnosis was Schizoaffective so a depressive aspect was always present) but Clozapine remained. The dosage varied depending on how well I was doing but I never stopped taking it.
I can say I’ve never felt a direct benefit of the drug. Over time I realized that Clozapine kept me stable. However, the benefit is more of a numbing effect. It somehow convinced those parts of my brain that wanted to act out that I really shouldn’t bother. To this day I experience a “flatness” in my response to the world. Clearly, these psychotropic drugs offer a trade-off. There is no miracle drug.
So 25+ years on where do I stand with Clozapine? For years my psychiatrist had warned of a metabolic syndrome whereby my glucose, cholesterol, and blood pressure would go out of whack. It hit me in my 30s and I gained severe weight. As I approach my fifties I worry about my physical health. Statistics show that people with severe mental illness often die in their fifties. A lot of that is lifestyle choices. My quitting smoking probably took me out of this threatened group but I worry.
I tried going off Clozapine once. I found a compliant doctor (it is hard to find one willing to do this) and we tried very slowly titrating down on the drug. After about a month of lowering the dosage (I was already at a low dosage) paranoid thoughts began to intrude and we stopped the process. My current doc is very holistic. He has me on a fasting diet and tea with turmeric among other interesting solutions. He has vowed that if I stop drinking (a current bad habit) and commit to a healthy lifestyle he is willing to bring me off Clozapine.
So I’ve had a complicated history with this powerful drug Clozapine. Who knows what the long-term effects of a drug like this are. There are no scientific studies measuring such. I would say that it could “buy” a recovery like this from when I was in my 20s I’d take it. The contrary side of me wonders if I could have had a more complete life (be more open to a range of emotions) all these years. Part of adulthood is realizing that life is a series of trade-offs. Right now I feel like I’m in pretty good shape so I guess I’ll end there.