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.

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.

A few weeks earlier, I’d started having numb feet after a bout of shoveling snow in our driveway; the next morning, I woke up with my entire lower body numb, prompting friends to jokingly advise I  not sleep. Neurologists said “Let’s wait and see,” but waiting and seeing wasn’t my MO, hyperactive Bronx Italian that I was (and am). I  wanted to know now, to fix it now.  So when a friend’s doctor-father
called to say he’d set up an appointment for me at Beth Israel
Hospital, I’d gratefully sounded the alarm. Why wait calmly when it can
be a Family Drama?

Bethisrael
Beth Israel Hospital, near Gramercy Park, is a teaching hospital. I made friends with the residents and medical students while they performed a spinal tap, not shouting much when they strapped me to a table and tipped my body in five directions to spread dye for a myelogram. I waited till it was over to throw up. They therefore let me trusted me with my thick chart a few days later, where I saw in my doctor’s cruelly clear handwriting: “suspicion MS.”
When I saw those words, I immediately began pacing the halls. Maybe it was also the drug they’d given me, the prednisone, but I felt even in these stupid hospital slippers I  could run a marathon. I’d just started jogging, a few months before; I  wanted to run now. Maybe if I  ran fast enough, I  could run far enough away from a diagnosis that I  was sure would wreck everything that was just now blooming for me. My doctor tried to reassure me: “You can keep exercising, live your life. Get married,  you can even have children!”  But no one, he admitted, could protect me against the future.
Those words felt like a demand, that I  hurry up and accomplish everything I  wanted to do in my life as soon as possible. Go ahead and get married (even if the man isn’t particularly faithful). Go work your butt off on the job. Get off that butt and start writing fiction, before your hands go away. My ears closed to any other advice, including “make sure you get some rest,” including “don’t try to sell your writing till you’re sure it’s good.”  The fear and the grief would just have to pop up in between, and express themselves in easily digestible 20-minute segments. My husband would hold me then, if he was home. You’re doing great. Don’t be afraid.
Those years of rationalization did make for some good work habits. I  started getting up at 5:30 every morning so I  could my own stories write before work. I  loved the calm of that early-morning hour, even before I  went for my run. And when I  had me second exacerbation, the following August, I  demanded a daily session on the exercise bike. I  had to be wheeled there, because this flareup had left me unable to walk.  But for the first time, I got my groove back with intravenous steroids — a hormone called ACTH; when I  asked the residents, who were again my buddies, how the stuff worked, they laughed. The clinical literature was so vague on the subject, they said, it might as well say AS IF BY MAGIC.
*  * *
By the time I needed that big drip again in 1998, everything was changing in the clinical landscape for MS. The drip itself had become a standard was 1000 mgs/day of prednisolone (familiar to anyone who’s showed up in an emergency room with an allergic reaction) for 7 days. The MRI, now
in standard use, was yielding quicker diagnosis, the negatives’ white smears showing the same scars found by the scalpels of old. New
treatments, both for symptoms and for actual disease process, were
approved by the FDA, starting with beta interferon in 1993; by 1999 it
was joined by Copaxone, the final result of those “Cop-1” studies by
the famous Bronx doctor, which became my drug of choice after my 1998
flare. I’d even been vindicated
by the MS gods: Nine years after the Heuga Center began funding such
research, Dr. Jack Petajan‘s 1996 study of aerobic fitness training for
people with MS was the first to show measurable benefits in strength,
functions, and mood. My determination to keep running — dancing, even —
was suddenly au courant.

Dd_boogie3
Dancing? I told you I’d explain. After my 1988 divorce, I’d moved San Francisco, and began managing my
illness with dance.  I started attending Barefoot Boogie, one of the city’s 
“dance jams.”
The studios, mostly at Rhythm and Motion Studios at 8th and Market, were where I  could be most at ease with my body. Not a good dancer, with the numb feet and vertigo, I was certainly an energetic one, running and bouncing all over the studio. Every once in a while, I hoped I’d spied some grace in the mirror.   I’d come here the night of the day I  flew back from India, where an 81-year-old college professor in Allahabad told me I  had “real pluck” to travel alone; I’d come here when each of my microwave-short Bay Area relationships ended. The week before I left San Francisco, I danced all night at Rhythm and Motion, my dance-buddies applauding and worrying about me.
New York’s so stressful, they all said. Hey, I told them, remember those mice? Stress has its uses! They’d heard from me about the stressed mice, about how researchers had placed some mice with MS (or rather an MS-like form of encephalitis)  in restraints and made them struggle — and the stressed mouse had a better disease course than those who hadn’t been as stressed. Ever since, those mice have been my role models. I love that the second study with those results was conducted in San Francisco — in 2003, three years after I moved to New York to make some journalistic lemonade.

In another column, I’ll write more about what this mouse has been up to in since I made that trip, and how writing about MS (which I’ve often done) was boot camp for some of my work at WVFC. MS is sort of a perfect storm in the
body’s endocrine, autoimmune and neurological systems — and writing
about it has made WVFC’s multiple layers natural to me., and how the dance of aging and perimenopause have created their own foxtrot.
Meanwhile, I’m thinking of getting a  cartoon mouse for my study wall. (It might be the guy below — I know he’s a rat, but he reminds me of me a little.) Any suggestions?

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4 thoughts on “Dancing with chronic illness, or when a mouse is your role model

  1. Julia Kay

    Hey Chris,
    Even knowing most of the story, I found this compelling and interesting and it even teared me up!

    One thought about stressed mice though – in Alexander land we say bridges are stressed every day by cars driving over them and it’s fine. It’s not the stress that’s the problem – it’s when the stress is a greater load than the bridge is built to bear. Find the necessary amount of tension – but not more!

    So much love,
    Julia

    Reply
  2. Julia Kay

    Well, both, of course.
    But strengthening the bridge of our sadly aging human bodies means, you know, eating right, getting 8 hours sleep, etc. Not things I’m particularly good at…. So paradoxically at the times we have the most stress, we also tend to weaken the bridge…

    Reply
  3. chrislombardi Post author

    Point well taken. And when we try to ignore those facts, the reminders can be brutal.

    Hope all your bridges and tunnels are doing ok!

    Reply

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