Mental illness is my calling. I began life as an inconsolable wailing infant, became a suicidal toddler, and a taciturn, morbidly depressed teenager until I was catapulted into lunacy as a young adult. I crash-landed in psychiatry, and my diagnosis and orientation as a sick person became the crux of my identity for the next 20 years. I just knew I couldn’t survive the way I was, and the doctors were offering me an alternative.
Always haunting me, though, was that I couldn’t dismiss my traumatic childhood— which had maybe even begun in the womb of a heavy smoker— or my spiritual experiences as irrelevant or delusional.
Exhausted and ashamed, I often fantasized about living off of medications, but that’s what it felt like: a fantasy. Nothing seemed more unattainable. Both for me—as someone who historically ends up on the run from the CIA and KKK—and for our culture, where there is no alternative infrastructure. But the internet is a game-changer. A proliferation of intelligence is exchanged, people are finding and learning from each other, movements are forming, and what seemed inevitable and inescapable before suddenly looks comically antiquated.
But for now, there are a lot of things that I want to say but feel I can’t because there would be big consequences for me, so I say them into my phone. You have to be careful whom you tell what and which words and mannerisms you use. With time and experience, I’ve learned, especially at the doctor’s, to speak with utmost calm, using measured speech without interjections and minimal hand gestures, my face relaxed, the intensity of my gaze on low, and say (in a much more articulate way), Yes, I believe in a spirit world.
Sorry. I didn’t start out that way. And if my spirits are actually just coming from the corners of my unconscious mind, that’s also okay. Doesn’t matter, I can handle it now, so could you please just let me have them? Would it be all right if I subscribe to a different belief system? There are many people who do, could I try to be one of them? (And then later, into my phone: “Get your fucking filthy fingers out of my brain, you pompous assholes, you think YOU have a corner on reality?!”)
But I don’t just unload my anger. I also elaborate on my unbridled and optimistic, and possibly oversimplified and utopian convictions that we are turning a truly beautiful corner in history. The previously oppressed peoples, including the crazies, are rising up. Either the corrupt and outmoded institutions will collapse, or it’s game over— and the good guys have the edge. It sounds delusional. And I certainly can’t let on that I secretly think I have a (possibly important) role to play in that revolution. Grandiosity.
I’m just a nobody plugging away on art that nobody will ever see, writing essays nobody will ever read, thinking things that won’t matter, whose life path is leading nowhere special in a world that won’t change. It’s actually becoming insulting. It’s annoying and belittling coming from the doctors, but it really hurts when it comes from my family.
But what best illustrates my changing relationship to psychiatry and myself is a letter I wrote to Michael Gray. He’s an activist attorney who works for a nonprofit called the Treatment Advocacy Center (TAC). I started following their work when I was in a very different phase in my life. I was really into D.J. Jaffe, who played an important role at the TAC before his death last year. He was an influential advocate for involuntary treatment, in the form of hospitalization and meds, to be continued into outpatient care. The biggest reasoning behind this approach is the concept of anosognosia, or when a mentally ill person is so deep into their delusions they don’t understand they’re sick. The intervention that may seem invasive and abusive to them at the time, his argument goes, is actually merciful because it is saving them from a life on the streets, jail, or the grave.
Jaffe was committed to the plight of the most seriously mentally ill, and that’s how I was diagnosed and for a long time how I identified. And it’s true that, if it weren’t for personal privilege, I probably would have ended up in one of those places. I just no longer think that it’s because I’m defective or diseased. I believe Jaffe meant well; however, there is a major and distressing possibility that he was buying into a faulty model and with a bit too much self-assurance. After all, there are some serious liberties at stake here.
I still follow the TAC and I recently attended a Zoom course Gray led called “Advocacy 101: The Do’s and Don’ts of Lobbying.” As he spoke about a revolution in mental health care being less about civil rights and more about stricter laws and enforcement, I cursed at the screen the same way I do into my phone. Right afterward, I wrote this email, employing the same restraint I use elsewhere:
Subject: A question born from personal experience
I watched your Zoom presentation, “Advocacy 101,” and I want to thank you for being so available and interested in hearing what people who care about this issue have to say and for giving practical advice. It’s because of that that I decided to write to you.
I am diagnosed schizoaffective, have been hospitalized ten times in six states in the U.S. and once in Germany, so I am familiar with many levels of care and the variables created by law (I was committed under Kendra’s Law in New York and released prematurely in California). Most of the hospitalizations were for psychosis, one was for depression, and one was for a very nearly successful suicide attempt.
I’m on Clozapine (I’m sure you know it was D.J. Jaffe’s favorite for the most severely ill) and have taken it for nine years, after many assortments of other meds. Two years ago, I was caring for my sick mother and I wanted to be able to hear her when she woke up, something I would ordinarily sleep through because of the Clozapine. So I reduced it by quite a bit, a third. I was planning on going back up to my previous dose, but I realized I liked not being knocked out and couldn’t make myself go back up. I also liked being more alert and communicative. When my mother died and I went home to Germany, I told my psychiatrist about the reduction and he asked me if I wanted to continue to reduce. My response was, Of course not! Do you know how dangerous that is?! I thought about it and decided what the hell, if he’s okay with it, I’ll try.
Since then, I have been slowly reducing and I can’t tell you how much the medication was doing that I wasn’t even aware of. Side effects listed on the warning pamphlet, side effects that aren’t, but most importantly, side effects that aren’t just physical, but profound, intellectual, social, and spiritual.
I have now been stable for considerable time on a minuscule dose of this supposed “lifeline” medication, have found a psychiatrist trained in de-prescribing, and plan on proceeding slowly with reductions (I’m also working on a mood stabilizer and antidepressant) with the overarching idea of seeing for myself if the “biological illness/diabetes” model is right or if recovery off meds is possible. There is quite a bit of evidence that it is, but I’m sure you’ve already heard it from the anti-psych posse. I will proceed with utmost caution and if I need to go back up, I will face that and accept it.
I always thought that when people like Will Hall and Sean Blackwell talked about life off meds, that they just didn’t have it as bad as I did. That mental illness is over-diagnosed and medications are overprescribed, but some people really need them and I’m one of them. Now I question that.
So my question to you is, and I ask in all sincerity…how long would I have to be off meds and stay stable (or as stable as a normal person), safe, and out of the hospital before my story would mean something to you and the advocates for chemical interventions, especially the involuntary ones, to treat states of mind that may not be sick or symptomatic, but simply elsewhere? And would my singular story make you reconsider that model? Because if there are gentler, less invasive and severe, more loving and creative ways of handling minds than with drugs, shouldn’t that be the revolution in care?
Thanks again and all the best,
I sent the email on April 25. As of now, that was more than a month ago, and I’m really hoping for a response. I can keep you posted. I hope he’s thinking about it because if he doesn’t respond, I’ll be pretty disappointed in him. In the meantime, I’ve continued my meds reductions and I’m still doing well. Nothing has ever been more important to me than staying that way and I really think I got this. If I’m wrong, I’ll eat my words, but I am convinced I’m on the road to recovery, not relapse.
And I’ve been wondering what taking on the establishment would look like. How many of us and with what kind of documentation of what kind of illnesses, and how long off meds and out of the hospitals, and with what additional evidence of health would we need to become a critical mass and show that recovery is possible? How do you take on a behemoth like psychiatry? A class-action lawsuit? Whom do you sue? Or would it be a friendlier affair? Should we let bygones be bygones and just work on turning the mental health care system into a system that’s truly about mental health?
I personally want people held accountable. I’m angry. Angry that for so many years I thought I just needed 13 hours of sleep, that I was just a constipated person, that I thought 25 extra pounds was a small price to pay for sanity, that my hair was falling out because I was getting older. Angry that no doctor ever warned me about akathisia. I’m angry that so few people seem to understand that it’s not just a brain, it’s a MIND. That shutting down its technical functions also means detaching the subjects from their thoughts, their intellect, their PERSONALITY. That when patients “complain” of brain fog, decreased creativity, sexual disfunction, and flattened emotions, those are not minor imperfections to be included on a peripheral list of side effects, those are their reasons to live.
I’m angry that I thought for so long that my brain was my worst enemy. And I’m angry on behalf of so many others.
When I press them, even my psychiatrists have to acknowledge that the institution is fundamentally flawed. That ultimately and unavoidably, psychiatry boils down to a form of social control. Maybe we should stop seeing this as a pesky drawback to be brushed aside in the interest of more stable lives and start viewing inherent problems as actual problems that urgently need to be addressed. Buildings don’t stay solid on rotten foundations. They crumble and fall.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.