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Visibility Studies

i’ve given a lot of talks – dozens, over the years, including keynote addresses and other speeches for large audiences. And the truth is, the talk – the speech – is my favorite genre. I like writing (and indeed, I write all my talks), but I especially like taking writing and joining it to sound. I like crafting them as speeches, and well, call me a narcissist, but I like having an audience. I like to make a joke and hear people laugh, say something and get a response. I’m honored when anyone asks me to do it, and I seldom say no.

The other day, I was asked to give a brief, five-minute talk on teaching to a group of influential alumni at my institution, and it was a complete disaster. My hands were shaking; my whole body was shaking. And as I became more and more aware of that, it got worse. I started to pace. Before long, I realized I was having a minor panic attack in front of fifteen people. At one point, my voice actually broke.

Was I nervous? How could I be nervous! I taught my first class over twenty years ago, and as I said, I’ve given dozens of talks and presentations.

In fact, by some accounts, this one went quite well. Afterwards, one of the members of the audience said she could have listened to me all day. Reports trickled in later that people were really impressed. The words, apparently, were fine. But I was emphatically not fine.

Have I mentioned that I can barely type this? It’s true; that eighty-words-a-minute the monks gave me in high school is gone. My hands just shake too much. I now write my name like a second-grader. I have trouble moving the mouse (more and more, I have to ask a bewildered student if they can click on an icon for me). I can’t hold a glass at a party. A little bit of nerves becomes a lot of nerves, which in turn results in me damn nearly falling apart with self consciousness. I seriously wonder if I can give talks anymore. I’m beginning to wonder if I can still teach, because these trembling-breakdowns are happening with more and more frequency.

All of this is being caused by a pill (actually, more like a handful of pills) that is used to treat bipolar disorder.

“Tremor,” they call it. It’s right there on the patient information sheet next to “may cause stomach upset” or whatever else. I’m sure it has a formal medical name. I hope it’s Latin for “may fuck up your life.”

Last spring, I spoke about my condition (bipolar disorder, not uncontrollable trembling and escalating anxiety) at the University of Pittsburgh. Here’s what I had to say about it:

I’m always at pains to explain to people what it’s like to be bipolar. The biggest problem you have is that the feelings of hopelessness, exhaustion, and despair seem to you to be caused by the manifest dearth of any reason for hope, laziness, and the fact that everything is obviously dark. The feelings of elation, invincibility, the thought that you’ve figured it all out, and all the energy, just mean that things are going really well – maybe that you’re not bipolar at all! And if you’re experiencing what’s called “negative mania” (angry, irritable, and so forth), well, then it’s whatever’s in front of you that’s causing that, not your brain. It takes enormous effort and skill – and I am far from being expert at it – to notice that these thought patterns and behaviors (which can eventually lead to, and in my case have led to, delusion and hallucination) are depression and mania and not what they might seem to be.

And I say this as someone who knows they have this condition. You just can’t see it while you’re having it. It’s only when it’s over that you finally see how screwed up you were, and for many people, there are jobs, relationships, and finances left in ruins for them to sort through.

Worst of all is that even the people closest to you can have a lot of trouble understanding it. Why can’t you just snap out of it? Get out of bed? Why can’t you see that that project is, um, a little nuts? But we just can’t. Sometimes, we’re asking ourselves the same thing.

And then even when the medication works, we live in constant fear that it’s going to come around again. A lot of us are deeply traumatized by manic episodes (it only takes one). It’s like we’re watching and waiting for it to happen again. “I feel fine now (or do I)?”

When I first got my diagnosis, I was terrified. The doctor was suddenly talking about having me take “mood stabilizers” and “anti-psychotics” (anti-psychotics?). Little did I know that it would take years to find the right combination of drugs, and that even when I did, I’d still have to manage the symptoms of the illness every day.

Finally, finally, I found the miracle drug (I won’t say what it is, because the one that works – or the combination that works – is different for everyone; if you found this page searching for bipolar disorder, please work with your doctor, not the Internet). I still have symptoms, but I can absolutely manage them myself. Which means that no one ever has to know. Which is how I’d like it to be, thank you very much.

And then suddenly, my disability becomes visible in a way I didn’t expect.

I’m far from being an expert on disability studies. I’ve never written a word about it, and aside from that talk in Pittsburgh (the bipolar revelations made sense in context), I’ve barely mentioned it in any professional context. But my ears prick up whenever anyone is talking about it. Not that I’m disabled, mind you. No, no. This is different. I mean, sure: Lots of disability scholars talk about mental illness. But they’re not talking about me, because I’m not having delusions or stuck in the crushing darkness of bipolar depression. That’s all behind me (for now, anyway). Things are just simmering: racing thoughts here and there, some OCD-like behaviors, mood swings. But if I play it all right, no one has to know what’s going on in the privacy of my own mind.

Would someone, upon witnessing my apparent inability to use a mouse, conclude that I’m bipolar? Probably not. A couple of times, I’ve excused myself by saying that I’m taking a medication that causes the trembling as a side effect, and who’s to say what that medication might be? But to me it feels like a well-guarded secret suddenly getting out in the open. Oh, great. Now everyone can see I’m crazy.

And it is slowly dawning on me how damaging and hurtful that really is.

I can’t speak for all people who suffer from what has sometimes been called the “invisible disability” of mental illness, but I’ve spoken to enough people to know that one of the most common emotions we feel about our condition is shame. We’re embarrassed that we have these problems. We don’t want anyone to know.

There have been a couple of times when I’ve actually revealed my condition to a group of students. There’s a woman on campus who shows up from time to time who is very clearly schizophrenic, and who has become the subject of much ridicule among some (too many) students. I just had to say, “Oh, by the way . . .” at some point. There have also been times when I’ve been discussing “madness” with students in a lit. class and worried about the way the conversation about “crazy people” was turning. Every single time I’ve done this, I’ve had a student come forward and tell me they think they might have some kind of problem. And every time, my heart just about breaks, because you can see that the thing that’s preventing them from getting help (aside from the insidious logic of mental illness itself, which convinces you you don’t have it) is shame. What’s happening to me now feels like that shame becoming manifest.

We have a long way to go as a culture when it comes to removing the stigma of mental illness (search Twitter for “bipolar” or “schizophrenic” and you’ll see what I mean). But to be honest, I have a long way to go as well – at least when it comes to thinking about my own condition and how it affects me. I could never blame anyone for keeping their secret. But now that my secret is erupting daily in this unlikely way, I’m wondering more and more about how it might contribute to the very stigma I see as so damaging in the first place.

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