Tag Archives: EAE

Dancing with chronic illness, or when a mouse is your role model

Another cross-post, but of  work dear to me: a personal essay I first wrote a couple years back, when asked for something in the category “strange bedfellows.” You get to decide who the bedfellows are. (And if you click on the second page, you find out who the mouse is – with video!)

A blast from the recent past: Queens Boulevard had its usual martial look after a snowstorm. City snowplows had made quick corridors, long since finished off by relentless traffic, while sculpting on each side massive walls of hard-packed snow, some shaped like the cars they’d buried. On each corner, pedestrians stomped the snowdrifts into slush, occasionally even breaking the ice underneath. Great, I thought as I descended the subway stairs. Two great problems that taste great together.

Wrapped in a down coat that made me look at 41 like an overgrown toddler, I also carried a hefty backpack, the kind that turns into a rolling cart on clear ground. All of which made crossing the street a comic challenge even for a normal person, if you could really call normal a community college instructor who carried reams of paper on her back like some demented Sherpa.

The first corner took me about seven minutes, using my sight to find the first place to step and then trying to manage each slide across the bulk, hurling my pack across at the last moment. On the second corner restless students passed me, as if I  were a tree that had come half-unmoored. At the third, and mercifully last before I  got to the school doors, the drifts were smaller, but icy patches made it treacherous, passage still slow. For a normal person, navigating that snow would be tricky. But for me, whose feet felt wrapped in cotton wool on good days and almost numb on bad ones, it was asking a deaf person to sing a subtle tone poem, with broken bones the penalty for getting it wrong.

Suddenly, to my right, a petite woman of about 70, hair and lips a defiant orange, reached for my pack and offered a shoulder. I  nodded gratefully and let her lead me across the ice, letting go at the other end so quickly she  barely allowed time for me to thank her.

I waited till I  got to school to start laughing, not at the unexpected good Samaritan but at myself. This is what MS means, I  thought. You’re so slow, ladies 20 years older than beat you down the block.

I  suddenly wished some of the people who told me, “I wish I had your energy” had seen that. Being outwardly Type A had its uses – especially in the department, which thought little of piling on more classes for me to teach (an advantage for an adjunct). I  didn’t necessarily want to remind them of the limits to that energy, and they might not get why I  was laughing. Hire the handicapped, they’re fun to watch.
If twenty years of this hadn’t given me a sense of humor about it, I  thought, that fact would be a tragedy worth a telethon. Or something.
*   *    *  *

I’ve stopped teaching since then, at least for now, but mornings like today — when the mercury is teasing with near-frost –make me think of that week in Queens. Unlike most people with multiple sclerosis, my symptoms don’t get worse in the heat: it’s lower temperatures that turn my body numb, make my fatigue worse than ever, make my handwriting even more like shorthand than before. It happens indoors, too, sometimes with air conditioning: I still don’t know what Manhattan’s Community Board Five thought when they first saw this reporter drag herself along the wall of their meeting room because she couldn’t feel her legs (“Is that girl drunk?”)  When you’re diagnosed at 22 with a chronic illness, you feel life just handed you a big, sour lemon. But the key to getting through it for 20 years has been, at least for me, making lemonade (or maybe lemon martinis?) out of that lemon.

A bit of history, first: the lemon’s, and then a bit of mine.

Jean-Martin_Charcot
Multiple sclerosis means, literally, many scars — a name coined in 1868 by Dr. Jean-Martin Charcot, the father of neurology, after the death of a woman who had come to him with tremors and slurred speech. In her brain,  and those of patients like her, he found lesions smaller than a fingernail, threaded and knotted through the gray matter. He tried strychnine, electrical stimulation, injections of liquid gold, but nothing even helped.
Even for most of the twentieth century, all researchers were able to accomplish was to learn more about how the disease operates: the body’s immune system jumps up and attacks for no apparent reason the myelin sheath, the mix of proteins that line the nerves. The disease flared without apparent warning, and often receded, though each flareup often left patients worse off than before. And throughout most of the century, treatments were few and far between.  Physicians were thus, understandably, cautious in their approach. Right up until the 1980’s, many MS patients were discouraged from exercise, or regular employment.

Heuga1973
When Olympic gold-medal skier Jimmie Heuga came down with the illness in 1970, his doctors advised him to stop training and rest. But when staying sedentary didn’t help him improve, Heuga took their advice and flipped it 180 degrees, going back into training – if not at Olympic level – and starting a center for people with MS to devise structured exercise programs. In 1987, his center also began to fund research to challenge the conventional wisdom and promote a rehabilitative model for MS, one that employed exercise and physical therapy as equal partners with medication. Meanwhile,  one December night back then, I was hurtling to Manhattan frommt home in upstate New York in the middle of the night, hoping to learn what was wrong with me. As the car raced down Highway 17, the darkness was pierced in places by bursts of holiday lights, some towns decking their halls early and sending bits of red and blue across the relentless green of New York highway signs.

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