In the late ’90s I experienced some kind of distress of consciousness. My wife took me to the emergency room of a local hospital and I was told I had “bipolar disorder,” an incurable “mental illness” which meant I would have to be on psychiatric drugs the rest of my life.
We now know that the idea of chemical imbalances in the brain is a myth (http://www.cepuk.org). This simple story took away my humanity. How? It was a tragedy of errors. Nobody knows how consciousness arises from or is connected to the brain. It is one of the most complicated and fascinating questions of our modern age. (Start with “Conversations on Consciousness” by Susan Blackmore (2005) and go from there.)
Mainstream psychiatry in the United States only makes its diagnoses available through a two hundred dollar book (available in paperback for “only” $110 or an app for $70). This makes no sense. Why are the diagnostic criteria not freely available on the Internet? The ICD-10 Section V diagnostic criteria are, however, freely available and are here. Everybody should read these definitions, to gain an understanding of the subjectivity behind them.
It is because institutional psychiatry defined the brain as consciousness that my humanity was taken from me. Here’s the logic: you have chemical imbalances (wrong). Thus your brain is broken (wrong). “Mind” (or more properly consciousness) equals brain (completely unproven). Thus, your mind is diseased. Therefore your thoughts are diseased (the logic becomes depressingly clear). Therefore you, the “I” that you think you are has disappeared because no thought that “you” have is clean, is anything but a diseased thought. You are just a collection of diseased thoughts. The self disintegrates.
Do you see? What am I but my thoughts and emotions? If my thoughts are diseased, if I cannot have a single clean thought, I cannot self-reflect. I become less than human, sub-human, Caliban.
What was the experience like, externally? It was like being in the backseat of a car on a long road trip with your parents (mental health patients are treated like children because they have no minds of their own) and never being allowed out of the car. And gradually you come to accept the back seat is your home, this small space and you grow accustomed to it and it is your world. Or it is like being on a subway car. All you can do is sit or stand and hold on, and look around at the inside of the car as you travel through an endless tunnel.
By virtue of something known as “meds creep” the drugs kept creeping up. At the end of 2007, I was on 4,950mg of psychotropic drugs daily. Sometime during those 10 years, my spouse and I met with a female geneticist. She told us there was a 50% chance of passing on the “mental illness” to any child we might have. A fifty percent chance is the worst chance there is, because the decision is all on you. That was not the only reason we made the choice we did (if it had been, I don’t know what my life would be like now) but, on the whole, I rather wish she hadn’t said that, because, as I now know, that’s nonsense.
The effects of the drugs, at their peak:
Examples of physical effects: Tremor in my hands, idiopathic peripheral neuropathy, no balance (unable to drive car or bicycle), edema, acid reflux (including waking up in the night unable to swallow), less tolerance for heat and cold, long-term weight gain (the pills turned off the “I’m full” switch): 65 pounds despite walking up to two hours a day, sciatica and and other problems associated with weight, thyroid damage etc.
Examples of effects on consciousness: Screaming nightmares once every couple of weeks, illusions (e.g. a kettle seen out of the corner of the eye seemed to be a black cat), drugs knocked me unconscious for 12 hours, followed by two plus hours difficulty concentrating, every day, and, in retrospect, changes in thought patterns.
I have none of these effects now, except for the heat/cold intolerance and a permanently damaged thyroid.
In 2013, I read “Anatomy of an Epidemic” by Robert Whitaker. I learnt that the “chemical imbalance” story was just that, a story. My brain was not diseased. These drugs don’t correct “chemical imbalances,” they create them. My thoughts were not diseased. In that moment I came back to myself. I was no longer Caliban but a human being again. So simple, so profound.
Many people have had much worse encounters with the system than I did. Some of their stories can be read at http://www.chrusp.org, the Center for the Human Rights of Users and Survivors of Psychiatry, or at the MindFreedom website: http://www.
Here are some of the legacies of my encounter:
The first is of the memory of having walked with the idea of death for a long time. In first writing about this I came up with the analogy of the wood. I reached it by walking across an empty field and slipping inside. I didn’t do it deliberately. It just happened. Once inside there was no getting out unless someone helped me. I was bound to walk under the shadow of the trees to the central clearing where, I realized, afterwards, death was awaiting me by my own hand. It was while I was writing this down that I had a sudden understanding of the phrase “the valley of the shadow of death.” The sides of the valley are so steep that they cast a shadow on you as you take the only path available to you; the path that leads down the valley to the ocean. I entered the wood (in 2007) because I could see no way out of my predicament. The years stretched ahead of me forever, with my physical and mental condition only worsening despite being fully “meds-compliant.” I switched psychiatrists in early 2008 and this saved me. The new psychiatrist decided I was over-medicated and started, at least, to reduce the drugs. The lasting effect of this walk in the woods is that I am no longer as courageous as I used to be (courage with a small “c,” the courage of the everyday). I explain it by saying that everyone is born with a certain number of courage units and I used them all resisting the walk to the central clearing in the wood. Fortunately, I have some again now but not as many as I would like. How you get them to regenerate I don’t know.
Second, I had to deal with the reactions to the encounter, what I call Hindsight Reactions to Extreme Stress (HRES). As the encounter started to wind-down I experienced certain reactions which still occasionally flare up. These are Anguish, remembering the experience, Anger, a directionless anger, that the experience happened at all and Fear, that the experience would happen again. I say directionless anger because there was and is nobody really to blame. Those responsible for my experience were implementing the system as it was then constituted. Later on there came a sense of Loss, because there is no recovery. Time has past. Certain things have been irretrievably lost, certain collateral damage has been done that cannot be fixed. All that can come is healing. I think of the four reactions as a bar graph, with the bars at different heights depending on how I feel. The biggest one still remaining is Fear.
Then there is the physical damage done to me by the drugs (my thyroid was irreparably damaged) and by my self-harm during those years, and a loss of experiencial memory. The memory loss is quite troubling at the moment.
Finally, I wonder about the effect the drugs had on my mind. I hadn’t really thought about the possibility of that until I came across the paper: “The psychoactive effects of psychiatric medication: The elephant in the room.” I began to wonder how much of my thoughts and feelings during the time of the encounter were a result of taking the psychiatric drugs. Not the pain the drugs inflicted on me, even, but the actual content of my thoughts and the strength, depth and type of my feelings.
A simple explanation of how I think forced psychiatric drug taking can be torture:
The only way one can say: “I feel mentally tired” is if mind and consciousness are two separate things.
Because something is observing and something is observed (two things). Which means that I can feel if the drugs are hurting my mind and if I am forced to take them that would be, you know, torture. (See 2013 UN report: Torture in Healthcare Settings: Response to report including letters from psychiatric associations and link to original report can be found here.)
I was in a locked ward five times during the course of 18 years. I understand the feeling of loss of liberty and the powerlessness that comes with those experiences. The first time was because I had suffered a nervous breakdown. The other times were because I suffered from the (effectively) DTs after coming off the drugs too fast.
Finally, the thing that is missing from the recovery journey is support.
There have been numerous stories of the horrific things provided in the name of “treatment,” from John Read’s recent account of an Australian man given 50 courses of “ECT”, to Jim Gottstein’s “Everyday Horrors …” at PsychRights to the stories at the CHRUSP website. But that didn’t happen to me. For which I am very thankful. So how do I think of myself now? As a “graduate of psychiatry,” a term which acknowledges the learning that comes with experience but also says that the experience is behind me; I am moving on. As a new graduate (taking one more class in summer school, I’m not quite off the drugs yet), I wonder what the future holds.
I would like to draw your attention to the DebateGraph project of ISPS-US. In a number of different “maps,” people are engaged in discussing publicly challenging issues surrounding psychosis, providing resources for understanding of same and thinking about how best to move forward. Several of the maps are open to the public and the address for more information is debategraph.org/ispsuspv.
Note: Stories of coming off psychiatric drugs can be found here and at the Beyond Meds website. See also Recovering From Psychiatry.
D. Williams