Living With — and Learning From — Disease

Back in college, any time my roommate Marc and I found ourselves in a crowded elevator, we'd burst out laughing. I'm not sure what was going on, but I think it had something to do with the unspoken language between people experiencing a shared nervous breakdown.

We survived those years by wrapping ourselves enthusiastically in pessimism, and we viewed our constant acknowledgment of our inability to cope as a talisman against encroaching adulthood. When we reconnected years later, I felt that comforting sense of familiarity you only experience with those who have seen and accepted you at your worst.

But now Marc is going through an experience that has put an end to our mutual identification. In 2003, he was diagnosed with Primary Progressive Multiple Sclerosis. Sporadically encountering someone undergoing this kind of deterioration etches stark imagery — there's Marc limping; there he is again, having to be helped into a car; there he is one more time, unable to take a step without tugging his leg forward, like Dr. Strangelove pulling on his artificial arm.

I couldn't imagine Marc (translation: myself) coping with such a catastrophe. Yet each time I observed a new, more horrifying infirmity, I noted his distinct lack of moroseness. Where was that trademark glass-completely-empty outlook? "I'm now the proud owner of a power wheelchair," he wrote in an email. "Forget about MS, the price of gas alone made it a necessity."

Jokes? Now? How was he doing it?

"When the doctor gave me the diagnosis, all I could think was I wasted so much time being miserable," Marc says, in a recent phone conversation. "There was no cosmic timekeeper standing in the corner, saying 'Marc has spent 8.5 years being depressed, so let's put this off till 2011.' You don't get that time back, and you don't score any cosmic brownie points for being unhappy."

You don't?

"A lot of platitudes I used to think were bullshit have become hard truths. For instance, you're responsible for your own happiness. If I woke up tomorrow healthy, I'd know life's a miracle and I'd live it in a very different way. Chances of that happening are very slim, so I have to take it where it comes. Today, I'm talking to my old friend, and that's a good day. Happiness takes effort. Shit's gonna happen, but the way you react is within your control."

Marc now spends a lot of time moderating an MS bulletin board online, which he considers an invaluable tool for anyone coping with disease. And he hasn't given up hope. Emerging stem cell therapies, in particular, show great promise.

"When I was healthy, I spent years reading books on Zen and Taoism, and 25 years in psychotherapy," he says. "All of those helped me to reach some kind of emotional maturity. But nothing helped like getting told you have an incurable disease."

When I got off the phone, I felt my world had turned upside down. I mentally riffled through all the things to worry about: the lifeless job market, property values, health insurance. Plus my hand was hurting; I was sure it was broken.

It was a good day.