Note From a Consumer

Last Thursday I attended a showing here of Minds on the Edge: Facing Mental Illness. (My last entry showed the promo.) The documentary, the latest in the Fred Friendly Seminar series, is being aired on PBS this month. It uses a format you may have seen over the years in previous installments (since its inception there have been over a hundred):

The Seminars always begin with a little story and a problem that could confront almost anyone. The implications of this problem, whatever it may be, then ripple out to encompass larger and larger issues and trigger ethical, emotional, legal, and public policy questions that are always overlapping and sometimes in conflict. Each Seminar program brings together a carefully chosen panel that contributes professional expertise as well as personal experience to the discussion. As the panelists wrestle with the issues presented in the hypothetical story, they are encouraged not just to say what they think about an issue, but to say what they would do in difficult decision-making situations if they were personally involved. The viewers are along for the ride, emotionally and intellectually, as the story creates a link for citizens between their lives and issues in the headlines that so often seem remote, abstract and unconnected to their day to day concerns.

It's an effective method. Minds on the Edge addresses mainly the problems involved first, in getting persons experiencing a mental illness crisis into treatment (the assumption is that most such persons resist treatment); and second, the way in which the mental health "system" takes care of persons once they do get treatment. I place "system" in quotes because, as the program makes clear, no system exists, merely a jumble of well intentioned but underfunded and uncoordinated efforts by a variety of hospital, outpatient, governmental, and non profit organizations.

You can find the entire program online. It runs just slightly over an hour, and on the whole it's fascinating but pretty depressing.

In addition to watching it on PBS or online, you can watch it at a screening at some church, civic organization, or similar venue. This screening I attended was organized by the local chapter of NAMI (National Alliance on Mental Illness). About forty people were also in attendance. NAMI divides the mental health world into three types of person: providers, consumers, and loved ones. Providers are mental health professionals, advocates, etc. Consumers are people like me; i.e., those who have a mental illness and are therefore consumers (or at least potential consumers) of mental health care. Loved ones are the friends and family -- usually parents and/or siblings -- of consumers. The categories can overlap. Providers, in several instances, are also consumers. I suppose they could be loved ones as well.

By the way, I'm not wild about being called a consumer. Words carry freight. The phrase consumer not only sounds kind of weird to me but also implies that being in treatment for a mental illness is central to my identity. As I hope I've made clear by now, I dislike any phraseology that conflates an illness one has with a statement of what one is. Still, it's plain that consumer was chosen faute de mieux, so I guess I can live with it.

Following the screening was a sort of panel discussion that involved a consumer (who happened also to be the chapter president), a provider, and two loved ones (a father and mother with a son who has bipolar disorder). Early in the discussion it became apparent that most of the audience consisted of self-identified loved ones. I seemed to be one of the few consumers in attendance.

I had learned about the screening following a brief conversation in August at the annual Army War College "county fair," an elaborate event in which dozens of local merchants, non profit groups, etc., congregate for an all day event designed to give the incoming resident class and their families an idea of the services locally available. I had a brief exchange with the people manning the NAMI booth, mentioned that I had bipolar disorder, and offered to join their speaker's bureau if they had one. They did. The most appropriate one seemed to be a program called In Our Own Voice. Here's a description from the web site:

In Our Own Voice (IOOV) is a unique public education program developed by NAMI, in which two trained consumer speakers share compelling personal stories about living with mental illness and achieving recovery.

The program was started with a grant from Eli Lilly and Company.

IOOV is an opportunity for those who have struggled with mental illness to gain confidence and to share their individual experiences of recovery and transformation.

Throughout the IOOV presentation, audience members are encouraged to offer feedback and ask questions. Audience participation is an important aspect of IOOV because the more audience members become involved, the closer they come to understanding what it is like to live with a mental illness and stay in recovery.

IOOV presentations are given to consumer groups, students, law enforcement officials, educators, providers, faith community members, politicians, professionals, inmates, and interested civic groups.

All presentations are offered free of charge.

My first presentation is slated for November 16 at a Family to Family Education Program, a free, 12-week course for family caregivers of individuals with severe mental illnesses.

I have, of course, written in several venues about having bipolar disorder. But, aside from speaking to a psychology class at Dickinson College, this will be the first time I've given a regular talk on the subject. I feel slightly daunted at the prospect. To begin with, I'm fortunate enough to have a mental illness that, compared to what others have to face, is mild. It's a pain in the ass sometimes, but it's never seriously interfered with my ability to function normally. Indeed, I've always felt that from a mental health advocacy standpoint, my chief value is as a high functioning individual willing to say forthrightly that he has a mental illness. People who can keep their diagnosis private generally tend to do so.

As a corollary, I worry that anything I have to say will be a) irrelevant to the situations of my audience; or worse b) will convey the disastrous impression that if I can manage the illness so "easily," then so could their family members if only they applied themselves. The only solution I can think of is to offer the appropriate caveats, concentrate on my own experience, and avoid saying anything that sounds prescriptive. And anyway, the main thing I would want to convey is how impressed I am that they are actively supporting their loved ones -- I mean consumers. Aside from being under the care of a psychiatrist and therapist, I can think of nothing more critical to helping someone with a mental illness manage it most effectively.

Minds on the Edge

Ambushed

Dana Jennings, who blogs in the New York Times about his struggle with prostate cancer, writes today that he is "recovering well from an aggressive case of prostate cancer" and that all "physical signposts of health are pointing in the right direction."

Which would be fine, except that he is depressed. And feels ambushed.

This isn’t about sadness or melancholy [Jennings writes]. It’s more profound than that. Broadly, I have a keen sense of being oppressed, as if I were trapped, wrapped up in some thick fog coming in off the North Atlantic.

To be more specific, I’m exhausted, unfocused and tap my left foot a lot in agitation. I don’t much want to go anywhere — especially anyplace that’s crowded — and some days I can’t even bear the thought of picking up the phone or changing a light bulb. All of this is often topped off by an aspirin-proof headache.

The fatigue frustrates me most. When I envision myself it’s as a body in motion, walking or running, not foundering in bed. On one recent day, I slept till 10 in the morning — getting 11 hours of sleep — then took a nap from noon to 2. And I was still tired.

I’ve had occasional depression over the years, but nothing as dogged as this. When I first learned that I had prostate cancer, I wondered about depression. But after the shock of the diagnosis wore off, I was sharp and clear-headed. I wasn’t depressed as I went through treatment — surgery, radiation and hormone therapy. I was buoyed by a kind of illness-induced adrenaline.

Jennings' description resonates with me in two respects. First, it resembles my own experience of depression. With me the dominant symptoms are usually hypersomnia and fatigue. And he's not kidding when he says there are days when changing a light bulb seems impossibly hard; with me that's standard.

Sure, there's also a general sense that my life is awful and will never get better, but most of the time I'm able to dismiss that as the distorted thinking typical of depression. In and of itself it isn't bad. What sucks is the loss of productivity, so that even when I'm back to normal I feel -- accurately -- that I'm badly behind in my work. And if only two or three weeks elapse before the next depression, the biochemically induced sense of hopelessness is reinforced by an existential sense of despair. I feel like I'm in a ditch so deep I will never be able to claw my way out.

Second, it confirms something my therapist has told me for years: People who have experienced both cancer and depression often maintain that of the two, depression is worse. Of course, as Jennings' case indicates, it isn't an either/or proposition. For at least one cancer patient in four, it's a both/and.

Toward the end of his post, Jennings declares, "It’s harder to write about the weight of depression than it is to write about prostate cancer and its physical indignities. Cancer is clear biological bad luck. But depression, no matter how much we know about it, makes part of me feel as if it’s somehow my fault, that I’m guilty of something that I can’t quite articulate."

Of course, that kind of guilt has nothing to do with depression. It's an artifact of our culture. Physical illness okay (with some exceptions), mental illness not okay (with no exceptions at all).

The Perpetual Voyage

I rather dislike having been so critical of my parents in the previous series. It isn't so much that I now disagree with anything I wrote back in 1997 (the posts, you'll recall, are excerpted from a journal I kept back then), as it is that nowadays I have a much stronger sense of the personal burdens my parents faced. I cannot say I miss them or look back on them affectionately. But I do feel great sympathy for them, and a sense of regret that they were never able to escape the traumas of their own childhoods and find the life they expected would be waiting for them once they reached adulthood, settled down, and had a family.

I think most of us at some level expect that eventually our lives will find safe harbor somewhere. That was true of them. It certainly was once true of me.

I remember a few lines from MacKinlay Kantor's Glory for Me, a book-length poem that was the basis for the Oscar-winning 1946 film The Best Years of Our Lives:

When all my labors and trials are o'er
And I am safe on that beautiful shore
O, that will be
Glory for me.

The poem has to do with the return from war and the "beautiful shore" is home. But if it applies at all, it applies to heaven. In life the voyage is perpetual. You simply exchange one series of challenges for another. Or rather, the challenges arise, and you can choose either to meet them, resent them, or ignore them. But they don't ignore you. And if you don't face them, they wind up owning you.

At some point I'll return to the narrative of the onset of bipolar disorder and discuss with candor what it's like to experience a manic episode or a bout with clinical depression. But for now I'll just say that having long internalized the idea that the disorder is something I have, rather than a component of who I am, the challenge has not been--as it is for some--to figure out where my personality ends and the effects of the disorder begin. Rather, aside from simply managing the disorder from day to day, it has been to separate the effects on my life that stem from the existential pain of my childhood, and the effects that stem from the biochemical abnormality.

Onset - Pt 5

The revelations in Notebook 11 kept me up until 3 a.m. or so, particularly the entry in which I told Mom something was wrong with me and she blew me off. I talked about it today with my sister. Even before I broached this new information she said, “Do you ever feel that when we were growing up, nobody was really paying attention?” When I read her some of the entries I’d come across, she concurred that they did sound redolent of a mood disorder, and when I got to the entry about Mom she was not surprised. It seemed to us that Dad and Mom alike were determined that there would be just one designated patient in the family and Mom was it. By 1977 she had learned to exploit it—it was her main leverage on Dad, even more than her knowledge of his affair—and she pressed it for all it was worth. It was always very striking to me how courageously Mom dealt with her breast cancer and how craven she was about the manic depression.

Dad, for his part, resented the hell out of the fact that he had to pay Mom’s medical bills. I ran across an entry which reports that Dad had told their marriage counselor as much. I was surprised he’d admit it. As with a lot of the stuff I read, I had no memory of it, though it certainly sounded like Dad. My sister said she recalled the incident vividly. Moreover: “Do you remember,” she asked, “the expression ‘You get yours.’?” In Dad’s book, if he was paying for your medical bills (in the case of my Mom), or for ballet lessons (in the case of my sister) then they were getting theirs. The idea that a husband and a father owed his family things like time, energy, attention, and empathy was alien to him. Anything he did for you, he generally did so you’d get off his back.

Prologue - Part 1 - Part 2 - Part 3 - Part 4 - Part 5

Onset - Pt 4

To my surprise--because I don’t recall this at all--it turns out I wasn’t totally clueless about what was going on:

13 February, 11:16 p.m. . . . For what it’s worth, I think lack of sleep has a great deal to do with my emotional condition, much more than is usual with most people. I hope this proves the case. If so I may be able to end once and for all my more severe attacks of melancholy. . . . Must be cautious, must not stick my fragile mind in situations it cannot cope with.

I don’t remember this next incident, either, and when I saw it I just sat for a long time, staring in disbelief:

17 February, 12:16 p.m . . . I talked with Ma, briefly, about the mental peculiarities that have plagued me since June [1976]: how I oftimes seem to live in unreality, suspended in twilight, how my decisions & actions have not been of the first order. She dismissed the surreality as melodrama, and the “decisions & actions” bit by saying I had never been much of a decision maker & the ones I’m making nowadays are as good or better as any I’ve ever made. Also that, on balance, I am outwardly better adjusted than ever before. I could not make her see that inwardly I feel chaotic.

Oh you made her see, all right, I thought. It’s just that our family already had a designated patient and you weren’t it.

You bitch. You fucking bitch.

By this time I’m skipping school on a regular basis. No one seems to notice. A few days later I impulsively hop in a car with several potheads with whom I worked. Soon after occurs an amazing string of flirtations, make-out sessions, all night drunks, and so on with an array of girls--just off-hand I can think of a half-dozen, and I’m probably missing at least a couple--at the center of which soon emerges Jennifer, of suicide note--“I love Jennifer, desperately and impossibly”--fame. Barely three months separate the day I penned my entry about vainly trying to convince Mom that something was wrong, to the day I swallow a bottle of barbituates like so much popcorn.

Prologue - Part 1 - Part 2 - Part 3 - Part 4 - Part 5