Despite new medication, more medication, new doctors, and more therapy, I have spent the past two years getting sicker.
This happens sometimes in the course of a psychotic illness. When I was twenty-four years old, after a decade of professionals and hospitals and one extended stint in inpatient care, I was diagnosed with bipolar disorder type one with psychotic features, and later reclassified to schizoaffective disorder of the bipolar type. For years after that, with the help of just a mood stabilizer and occasional sedatives, I was OK. Not entirely fine, but functional—capable of holding a job, maintaining relationships, and with the exception of one ill-advised going-off-medication, managing to stay out of the hospital. After years of avoiding doctors so that nobody would actually tell me that something was as terribly wrong as I suspected, I was able to maintain the opposite sham: I knew something was wrong, it had a name and a treatment, and so perhaps I could quietly take my pills and never talk about it again.
But sometimes, despite treatment, you get worse. In my case the inciting incident was catastrophic stress, but in some patients it doesn’t even take that much: you have a bad crash, then a bad cycle, and even as the proximate cause recedes into history, the downward turn continues. Your brain took a hit. You’re just a little worse now, forever. It will just take a little bit more care to keep you sane, forever. Two years ago, with the help of just a mood stabilizer and occasional sedatives, I was OK. Now, I take a stronger mood stabilizer and two doses of antipsychotics every day—and the Parkinson’s medication to offset the motor dysfunction brought on by the antipsychotic—and the occasional sedative, and still, I’m not quite better. I’ve been hospitalized twice in the past year. I’ve gone through full-blown mood episodes, as bad as they were before I was treated. I’ve felt disorientation and dying affect and delusions creep back into my life and while medication and therapy and a tedious regimen of what I hate to call ‘self-care’ have kept me stable, it’s all very precarious. I’m not telling you all of this to evoke pity, or to begin a long inward-looking account of my own illness, but because this turn has brought about a situation where I haven’t been able to do what I always wanted to and pretend—except in the few seconds every day when I had to grab a pill—that I was fine now, all better, all cured. Being sick has lodged itself into the active, ordinary conduct of my days. I have to schedule around the sedation brought on by medicine. I have to stick to a routine. I have to pay attention to what I’m hearing and feeling and to what beliefs might be smuggling themselves into my thoughts, and stop, more often than I would like, to close my eyes and focus and engage in one of the silly, humiliating little cognitive control tricks I’ve been taught to keep it all under control. And, because I write, and because not talking about it is no longer sustainable, I’m to talk about it and write about it, even though I still find all of it more embarrassing than I suppose I should. So here we are.
I don’t know how often I’ll post here. I’d like to make it frequent, but I suspect it’ll be sporadic, at least for a while. I know that I don’t want to write full-fledged essays here, or write with any kind of formal or stylistic pretensions. I’m working on a book (two books, really) that touch on all of this, and the fully-formed thoughts in fully-formed sentences will go there. I think this will just be fore practice. For keeping a discipline and a log of thinking through my illness and the problem of illness in general.
I also know that the second half of that last sentence—’the problem of illness in general’—will be my focus. There is a great deal of very good writing on mental illness out there, but quite a lot of it is fully memoir. I am less interested in that and more interested in thinking about mental illness as a social, political, and cultural problem. Right now that conversation feels trapped between two extremes. On one hand, the old “stigmatizing” cliches about frothing lunatics and murders and mad women in attics; on the other hand, the well-intentioned but limiting cause of “destigmatizing” mental illness, a cause which, for all the good it’s no doubt done, has become a kind of respectability politics. In this view, mental illness is pitiable, maybe, and poorly understood, certainly, but never a problem with ramifications beyond access to care. It’s populated by cliches like ‘Actually, a severely mentally ill person is more likely to be the victim of a violent crime than the perpetrator’, a cliche which is true but which is true because while those with severe psychotic disorders are, in fact, two or three times more likely than the average person to commit a crime, they are ten times more likely to be the victim of one. These facts are connected. I’m terribly lucky to have otherwise been born to every kind of advantage. Many people, perhaps most people, with my condition are homeless or incarcerated or dead. We don’t currently have a framework for thinking seriously about that fact. We don’t have a social lens, or a moral lens, we certainly don’t have a quick, tweetable talking point, for balancing the ways in which mental illness is a problem for its patients, and the ways that the mentally ill can be a problem for everybody else. This isn’t all at the level of criminal justice. Think of Kanye West. It was so brave, said the world, for him to open up about his bipolar disorder. But it’s no excuse, and fuck him, and cancel him, when he started behaving the way that someone in the midst of a manic episode tends to behave. Be open and visible about your illness, but god, don’t have any symptoms. Don’t embarrass us. That’s respectability politics and it troubles me as much as any old trope about a murderous schizophrenic psycho ever has.
My hope is that this can be an informal place where I can think about these sticky problems. Where I can think about the political and social and moral questions of serious mental illness. I want to try, in little ways, to think about what the world owes to people like me, and what people like me owe to the world. I don’t know that we’ll make any progress, but I’ll try.
I’ll no doubt talk more about courts and hospitals and Kanye in future posts. I’ll also talk about other topics—support groups, pharmaceutical markets, new research, alternative treatments, even accounts of mental illness in literature (and the formal and critical challenges that come with it). But for now, I’ll explain what I mean above—and explain, I hope, the liminal space where I want this journal to live—by way of an example. I have google alerts set up for key words related to mental illness. It’s been essential as I gather material for my book. A few days ago, I got two hits on my alert for ‘schizoaffective’. Here they are:
The New Yorker
Wang was given a diagnosis of schizoaffective disorder nearly a decade after her first incidence of psychosis, at Yale. Drawing on scientific literature, ...
Woman slit mum's throat, WA court toldThe AustralianThe court heard on Tuesday that Shayler had a long history of mental illness, dating back to 1985, and had been diagnosed with schizoaffective ...
The first leads to a New Yorker review of Esmé Wang’s ‘The Collected Schizophrenias’, a books of essays about Wang’s schizoaffective disorder that I’ll no doubt have much more to say about in this space soon (briefly, I am very glad it exists, and have enjoyed parts of it a great deal, but do worry that it reproduces some of the same limited discursive possibilities outlined above…). The second is about a woman who murdered her mother.
I want to write about madness in a way that allows both of these stories. That sits somewhere between ‘The New Yorker’, ‘Yale’, ‘essay collection’ and ‘slit mum’s throat.’ Because both of them are true, and both of them are of this world, and both of them are part of the problem of glitching brains, and of my own life, and of the lives of millions of people like me.