Saturday, January 16, 2010

Talking the Walk (25)

...It Exacts a Full Look at the Worst

“Where's the hope?” That question again. And I have to go to my lifeline, Thomas Hardy: “...if way to the Better there be, it exacts a full look at the Worst.”

All right, then, here is a little two-item inventory of the Worst.

1) As I’ve realized, this past year especially, there isn’t a corner of my life that hasn’t been affected, and to some degree disabled, by mental illness. Romantic relationships, friendships, family ties. Ability to work productively and consistently, even to hold a job. Ability to learn (it was mental illness, I now realize, that caused me to take 13 years to get my B.A., not, as I often told myself, boredom or stupidity or the need to focus on creative writing). And the most fundamentally disabling aspect of losing self-definition, self-identity, because the narrative of life keeps getting blown apart. Today is October 27. Will I be able to read and understand these thoughts on November 27? I hope so. I am on a new combination of drugs that shows promise; I really hope to avoid hitting those depths. I want so badly to keep working and living more consistently. I want to stop living part-time, and try it full-time. I’m ready.

2) I’ve been told that I am an unusually high-functioning example of someone with a severe bipolar condition. Despite the crippling depressions, the equally dangerous manias, the suicidal spells; despite all this and more, I’ve managed to keep my self-employment as a tutor for the past fourteen years, I’ve published seven books, I’m happily married, I’m blessed with rich friendships. “You’re a success story,” my doctor tells me...and I believe her.

But...what is wrong with this picture?

If I am the success story, the fortunate exception, what about the rule? What about all the others? You hear people say, “He or she has a mental illness, but it is well-controlled.” Or: “They’re all right as long as they take their medication.” But: What does well-controlled mean? What is all right? What is functioning? Functioning how? By whose standards?

It is only a personal sample, but listen to this: In my year and a half living on a psychiatric ward, I met many seriously ill patients: schizophrenics, manic-depressives, suicide survivors. Over the years, I’ve run into many of these people–perhaps two dozen of them. Not one of them–not one–has ever returned fully to the life they were living before they became so drastically ill. I don’t pretend that’s a scientific, or exhaustive, study. But doesn’t it give you pause? Doesn’t it make you think?

While I was writing The Lily Pond, I met two people I went to high school with. James and Callie, I’ll call them. Both wrote poetry, were bright and vivacious–magnetic people with a risky lustre in their eyes. Both were carried, literally kicking and screaming, into Emergency wards in their twenties, and from there admitted to psychiatric wards. This happened many times, throughout their twenties and thirties. Our paths crossed on wards and in outpatient services. Once I was the one who wrestled Callie to the floor and frog-marched her to ER–one of the most horrible things I’ve ever had to do, and one of the most necessary. I lost touch with them. When I met them again, two years ago, at a conference our doctors had pressed us to attend, they both told me they were doing well on their drug regimens. They hadn’t been hospitalized in years. That was the good news. The bad news, from my persepective, was: glassy-eyed, slow-moving people, whose lined faces and missing teeth made them look ten years older than they were; their poverty, working at subsidized part-time jobs and living in group homes; their obvious cognitive impairment, speaking in simple, gappy sentences and utterly disengaged from their previous passion for literature and art.

Which is higher functioning? A fast–too fast–living poet, whose dangerous mental states put her or him as well as others at risk, and lead to hospitalization..or the “walking shadow” of that person, who is never hospitalized, but lives within vastly truncated horizons? I don’t have an answer to that terribly complicated question. But I hope you’ll agree with me that it’s a question worth asking.

One more note on this very thorny subject. Health care workers, and others close to the patient, will often call mental fogging or memory loss “an acceptable cost.” But acceptable to whom? Let’s reverse the roles. A doctor comes to me in severe psychological crisis. I say: here’s a pill that will alleviate your distress, at the acceptable cost of memory and thinking difficulties, attention deficit, sexual dysfunction, and a certain numbness and disengagement emotionally. Still acceptable? Let’s say the doctor tries the drug, and finding herself unable to practice as a doctor on it, unable to tolerate the disconnect with others, elects to stop taking the drug and accept the risk of further disabling episodes. Is she irrational? Is she “non-compliant”?

This is why I’ve chosen–to the frustration of some who know me–to err on the side of risk, opting for a mild regimen that stabilizes a little while risking bad episodes...if I can still be me. I have to keep pushing the envelope, because a life in which I cannot write, cannot think clearly or deeply, cannot feel passionately, cannot connect with others emotionally or physically...this is not my life as I ever want to define or live it.

People say: What if you have to accept it? Well, if I have to, I’ll try to. Like anyone backed into an ultimate corner, I’ll try my damndest to make my peace with it. But I’ll fight to the last second before it comes to that.

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