But What if Nobody Can Help You? But What if Nobody Will?

I have a file on my computer called ‘Ghost Stories.’ In it are links to what are often perfunctory local news stories about patients who have slipped through the cracks and gone missing. Family of schizophrenic man ask community to help find him, last seen leaving home last Sunday night, or Parents of bipolar teen search for their daughter, who is probably off medication, or, Police seek information on the whereabouts of such-and-such, with a history of one illness or another, last seen in a jacket going down this or that road at 2 or 3am. I can never find follow-ups, letting me know if these people were ever found. But sometimes the story begins with their discovery: Area lunatic found dead on the sidewalk, or under the bridge, or along the overpass.

I have over a hundred of these clippings saved, but one of them has haunted me since I found it a few months ago. I don’t know precisely why. It’s from 2010: “Homeless Woman Freezes to Death” and it is about a 56-year-old schizophrenic woman found dead behind a deli in Morrisvile, PA.

The woman, Paulette Wilkie, had lived with family, or in assisted living facilities, for the better part of twenty years. But a year before her death, Wilkie went off medication and (as often happens) replaced it with self-medication. As her behavior became more disruptive, she was thrown out of her group home. After a bout of homelessness and at least one hospitalization, Wilkie went to her father, who said that while he wanted to take her in, he was worried about what she might do off medication. Rather than go back on her meds, she returned to the street, and after a particularly cold night, she froze. Stories about Wilkie point out that despite the freezing temperatures, the city had not yet activated the emergency homeless housing protocols that might have saved her. But they also point out that Wilkie had begun to refuse offers of help, and likely would have refused housing, even if it had been available.

Wilkie’s story is difficult to read, not only in the sense of being emotionally difficult to consume, but in the sense that it is difficult to make it fit neatly within the cheap binary of ‘stigmatizing’ and ‘destigmatizing’ mental health discourse. I should admit that I barely believe there is a “stigmatizing” discourse anymore—where, precisely, is this allegedly dominant cultural force calling for us to lock up all the shameful crazies?—but to the extent that this attitude still exists, it is difficult to argue that even an uncooperative, disruptive patient who “chose”, in some deluded sense, to refuse help consequently deserves to freeze to death in an alley way as a result.

But the pat “destigmatizer” reading is scarcely any better. It would argue, I suppose, that all of this is a failure of health care system (why couldn’t they somehow make her take her medication?), or the group home (how dare they punish her for being ill?), or the father (what kind of monster refuses his own child like this?). But while it’s difficult to argue with general outrage over the notion that something failed Paulette Wilkie in this story—her illness and its consequences aren’t a moral failure which deserves punishment by death—it’s hard to find an uncomplicated specific object of scorn. The other patients in her group home mattered to, and without knowing more, I can’t say that the facility didn’t make the right decision in sacrificing Wilkie’s residency in order to respect the right of those other patients to recover free of aggressive, uncooperative disruption. Wilkie’s father no doubt felt (and no doubt still feels) a tremendous and incomprehensible guilt over his daughter’s death, but there also many, many stories of family members hurt and killed by unmedicated relatives. We like to pretend that violence potential doesn’t exist, but it does. Perhaps he should have taken her in, but it is cheap to look at that narrow slice of an entire difficult life trying to care for a very sick child and imagine that this father was an uncomplicated, callous villain. Others did try to help Wilkie, but she refused. Perhaps they should have tried harder, or more forcefully, but nobody here—not the group home, not the father, not Wilkie herself, not any of the people who were refused when they offered help—is easily found guilty. That is why this case is so difficult, and why so many cases like it resist an identifiable actor for easy castigation.

Pete Earley, a mental health journalist who has also written about this case, takes a more structural view. He identifies a need for non-conditional free housing as a solution that may have saved Wilkie. But while this may have helped, or at least delayed this particular death, this answer feels like just another measure that might have been refused (indeed, Earley maintains it’s “hogwash” that she would have refused, despite a pattern of past behavior to the contrary). It is, at any rate, easy to imagine this case without the assisted living home provoking calls for expanded funding for such homes (“Wilkie would have lived with full-time treatment!”), or a version without her father fueling essays on alienation and the importance of family support (“if only she’d had someone to turn to…”). It is easy to imagine a version where nobody offered to help Wilkie—where she was not, as reports say she was, a neighborhood fixture—leading to coverage predicated on the assumption that she would have accepted aid, if only aid had been offered. I never want to suggest that socialized housing (or medicine, or food) are only so-much-good-intentions, unlikely to make much difference—there should be nonconditional housing; there should be palatial and free treatment facilities even for the uncooperative and disruptive; nobody, not the disabled, not the ill, not even the criminal should ever be homeless and I am and always have been committed to socialist politics precisely because I believe that society’s resources must go first to those who need them, not those who can afford them—but I still believe that there will be those who slip through the cracks. Ghost stories. I still believe that Paulette Wilkie would have died as a result of her illness, albeit on a different day, or in a different manner, because there is no program that can entirely account for the genuine, contrary conflicts between the needs of the mentally ill and the consequences of mental illness for those around its victims. I’m sure that I will say some version of this in every entry in this journal: The problem is stickier than that. The problem is more difficult than that. This is all terribly hard.

Earley asks “who, if anyone, is to blame [for Wilkie’s death]? Mental health professionals? Her family? The police? Civil rights laws that protected her right to die with her rights on? Wilkie herself?” He answers: “all of us.” And I agree. We are all of us responsible to everyone and for everyone in every thing. But there is an immense distance between this imperative and the particulars of its execution in this case. And I don’t know how to travel between those places yet.

I lied before. I do know why Wilkie’s case sticks with me. It’s because some version of what happened to her is among my most dominant fears. Part of this is a matter of luck: while I sometimes worry about not having health insurance, I don’t worry, too often, that I will be entirely unable to afford care over the course of a lifetime. While I sometimes worry about employment, and housing, I am not entirely isolated in the world: somebody will take me in. But I do worry, often, about reaching a point where I refuse that luck. About reaching a point where I will not cooperate, despite the efforts of doctors and friends and family. About reaching a point where I do not want help, do not believe I need help, where I am willing to run away from those trying to help me, or worse, to become so terrified or angry that I hurt them when they try to help me until they are not willing to help me anymore. I am afraid of one day becoming sick enough that I reach the end of other people’s charity. I am afraid about turning somebody I love into Wilkie’s father, wanting to help, but unable to take the risk again, unable to endanger themselves to try to care for someone who refuses to be cared for anymore. From time to time, I tell my doctor that I am afraid that I’ll get so confused and sick that I kill myself some day, and usually I mean this in the ordinary sense—poison or gunshots or hanging. But sometimes I mean it like in this story. I mean it like a very long and very slow, confused and piecemeal suicide by refusal.

Between Yale University and a Knife Murderer

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:

Briefly Noted

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 told
The 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.