Some of What it’s Like for Me to Live With a Serious Mental Illness

Joseph Merlin Bowers

This morning I started reading The Great Pretender by Susannah Cahalan. It was recommended by a mental health advocate I have a lot of respect for, DJ Jaffe. Susannah also wrote Brain on Fire which I have read previously.

An autoimmune encephalitis caused her to experience psychosis and other symptoms of serious mental illness.  So diagnosed, she was fortunate enough to have the true cause of her symptoms discovered and get properly treated and cured.

Her first book described this experience. She also discusses the experience in the first chapter of the second book. Her discussion has motivated me to write this blog. Though cured, Susannah lives with an unshakable fear that psychosis may return. So it is for everyone who has ever experienced psychosis.

I first became psychotic before turning 17 and went on to experience more than 20 years of recurring psychotic episodes with periods in between of seemingly complete remission. I haven’t had a major episode in more than thirty years and my last minor experience with psychosis was nearly twenty years ago now. Nevertheless, the first part of the title of the book I wrote about my experiences is Life Under a Cloud. The cloud represents the inescapable, ever present fear that psychosis could return at any time for reasons no one really understands at this point in our history,

There is nothing more terrifying short of impending painful death than the realization that one’s brain has been malfunctioning-that you can’t depend on it to tell you what is real and what is not-to be your most valuable tool in navigating life in an often dangerous and challenging world.

Living under a cloud of apprehension that I may again experience symptoms that render me incapable of escaping a fantasy world long enough to complete a homework assignment, fill out a form or perform a routine job task is a constant for me. I’m not constantly thinking of these things, but the cloud never leaves.

Almost as bothersome an apprehension and sometimes fear is uncertainty. I just don’t know for sure anything of real importance.

Is my disease physical, a medical condition? How important is genetics as a cause? I know prevailing theories and a lot of statistics but no facts or scientific laws that explain my illness.

I was a science major in college and I try to be very open and honest with others and, most difficult of all, with myself. I wonder did my episodes end because of effective treatment or is the nature of my illness such that they would have ended eventually anyway running their course perhaps in a similar amount of time. I’ve had episodes that were short lived and didn’t get aggressively treated but nevertheless went away.

Do I really need the medication? I once did fine for about six years without any. The last time I tried going off, I didn’t get psychotic. I experienced brain malfunctions of a different nature. Why was this? Was it bad timing-my being under too much stress at the time for this major  a change? Was it withdrawal symptoms from a powerful drug?  Antipsychotics have disagreeable side effects. Mine comes with about five pages listing things that, though in many cases extremely rare, have happened to people taking  this medicine. Nobody should take anything longer than necessary and not needed. Do I need mine? I think so but I’m not sure.

Who is the real me? My daughter was prescribed Ritalin in second grade for attention deficit. She did well on the Ritalin and graduated valedictorian from high school. She had been thought slow by kindergarten and first grade teachers. One day she asked me very concerned, were the good grades her or the Ritalin. When one takes a drug that affects the functioning of the brain, one has to wonder if this fundamentally changes who they are. Is it the real me I was meant to be on the drug or off it? I told my daughter that the disease fundamentally changes who you are and the medication brings back the real you. I believe this, but I’m not sure.

I have experienced grandiosity and a messiah complex. Among many other delusional things, I have believed I was Jesus in a different life in a different place. Today my brain is not racing or absorbed in delusional fantasy. I am perfectly capable of functioning normally. But still sometimes I have to wonder: was there ever any truth to any of those things my delusional brain has told me so convincingly so often in the past? Some believe in reincarnation. Some believe we all play different roles in different lives on different worlds and maybe different universes. This is all highly unlikely I acknowledge, but technically possible given the current state of scientific certainty. So sometimes I wonder. I believe these fantasies were the product of a diseased brain. I’m not absolutely sure.

Partly because of the state of the art and science surrounding mental illness, these are some of the apprehensions, fears, uncertainty and doubts I live with.

I don’t really seek pity or even empathy. I’m truly a very lucky man having been able to live a pretty normal, successful life in spite of my illness. Comfortably retired on a medication that has been very effective, having learned a lot of coping skills, with a good support system and a loving family, I am free to do exactly what I want to do with the rest of my life.

I recently read an introduction to a book of short novels by John Steinbeck. The writer of the introduction said that Steinbeck’s avowed purpose in writing was to help people get to understand each other better. I thought to myself “what a noble purpose.” I hope that I can help people who have never experienced psychosis better understand those of us who have.

What I have been doing since retiring and intend to continue to do for the rest of my life is to wage war on the scourge of mental illness and combat widespread public ignorance about it.

 

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