While the music plays and the instructor counts the beat, I lie on the gym mat watching through the limestone-framed windows as gulls coast across the pewter sky. With my leg lifts turning rapidly into leg drops, I envy the birds their smooth flight, even as I feel more attuned to the stark leafless tree framed in the multi-paneled glass. Wooden, grounded.
The journey from ability to disability can be faster than a speeding bullet—ask Christopher Reeve—or slow as a meandering walk across the decades. Mine is more like a trip in a beat-up stick-shift Ford: a shuddering passage across pot-holed miles, headlights dimming, tranny grinding, a breakdown always imminent.
Although it’s been eight years since multiple sclerosis entered my life, I’ve long since forgotten the relief I first felt upon learning that I wasn’t on the brink of death. For in the past couple years, the “degenerative” part of degenerative disease has started to make its presence known. My physical life suddenly seems to be moving in dog years; for every year I live; the dog ages seven.
“It’s leg day,” the instructor shouts with sardonic glee as she continues the count for leg lifts. “Seven, eight, and again; one, two . . .” Newcomers to the class eventually get better, their muscles growing stronger, their stamina building. I get worse. My muscles and stamina are just fine, but my central nervous system keeps blowing a fuse. The messages don’t always get through. And so, like an electrical short, my muscular right leg sputters out after a few lifts.
M.S. can be full of such shocks. Problems with balance, eyesight, coordination, mobility, incontinence, aphasia and cognition can come and go or hang on permanently. Different people can get hit with different combinations and varying degrees of problems—or, as the National Institutes of Health said in one of its news releases: “These flare-ups of new or intensified symptoms last for variable amounts of time. A second form of M.S. is a chronic and progressive one in which symptoms steadily worsen. Either form can lead to disability and paralysis.” Depending on severity, this lovely disease can actually kill you, as it did a former neighbor of mine, who was blind, deaf and in a vegetative state for years before he died. But dying from M.S. is rare, unless you happen to run into Dr. Jack Kevorkian.
“Variable” is the key word in this disease, and that means there are no road maps, only unplanned side trips. Some can even be amusing. The messed-up signals suffered by the brain-damaged patients in Oliver Sachs’ The Man Who Mistook His Wife for a Hat had serious repercussions: One lost the memories that had made up his life, another lost the ability to make sense of visual clues. But cognitive problems generally aren’t as severe in M.S., although the central nervous system can play plenty of other spooky tricks. It particularly does so with skin sensations. My feet can burn for no reason. I can touch silk and feel like I’m running my fingers over sandpaper. For weeks last year I felt as though I was wearing one of those gaudy oversized World Wrestling Federation belts cinched tightly around my waist. Invisible ants sometimes crawl up my arms. Fun and games from my buddy, the central nervous system.
Always before—ah, yes, the before that signifies something has unequivocally changed—I thought of the disabled as unfortunate victims of life’s crap shoot. And, sometimes, I thought of their stunning initiative, their will to continue when an essential function fades into a memory of healthier times. Now, after, I focus on the trails they tread, looking for rest stops, scenic overviews, historic markers that tell the tales they have to tell.
When optic neuritis temporarily messes up my vision, I’m transported back to a small town and a small moment of understated glory. The woman, not yet 20, was a little nervous, a lot excited. Diabetes had taken her eyesight; it had not taken away her need to explore, to leave the boundaries of safe spaces and learn how to navigate in the dark. So I joined the parade that gloomy fall day: the pupil with her red and white cane in hand; the instructor, trailing behind a few feet, giving directions, watching for a misstep into the busy street; then the scribe, me, recording the lesson for a local magazine.
The instructor had driven the student a couple miles past the training facility, then gave her complex directions as they walked though the small town together—turn left here, go two blocks, cross the street, turn right, go left again. Several blocks from the starting point, he chatted with her for a couple of minutes, then told her to find the car.
Relying on the memory of the trip she’d just taken, she reversed herself and worked her way back. “It should be there,” she said, standing on the sidewalk, pointing her distinctive cane at something she couldn’t see. But the instructor and I could: It was his old dented compact car. It was success.
The triumph of that small scene in that small town stays with me today, giving words like gutsy and determined and perseverance a human face—a face chubby and acne-scarred and glowing with delight. A survivor.
The same day I watched another student, an elderly woman, who had asked for a lesson in how to tidy up the kitchen. “I want to keep my house clean,” she said as over and over again she wiped a counter with a damp dishcloth. “I always keep the house very clean.”
Her world, which sounded small enough to start with, had folded in on a trait that made up an important part of her self-identity. What would she do, I wondered, when she finally realized there was no joy in maintaining a sparkling home if she could never see it? Could see find something else that would make her happy?
Now, I tell myself to always think of alternatives, of Plan B, of options and possibilities that would not, if I lost my sight or my mobility or the use of my hands, imprison me in a joyless realm of bitterness and sorrow.
But one other lesson from that day stays with me, too: the damn puddle. It had been raining earlier, and as the student carefully stepped off a sidewalk, she landed in the water swirling through the gutter. Her tennis shoes and the hems of her jeans got soaked; for the rest of the trip she squished when she walked.
When she began heading for the water at the side of the street, the instructor never warned her about the small lake. “She’ll have to get used to it,” he told me sotto voce as he and I easily detoured around the water hazard.
Despite the triumph of her successful navigation, despite the stairway to independence the lesson had offered, there would always be, for her, that mud puddle. Day-in, day-out, every day of independence would be a victory for the sweet-faced 19-year-old. But every day would also be filled with unseen, unexpected perils. If indeed some rain must fall in every life, she was caught in a permanent downpour. But the mud puddle, I recalled, meant little to her. She’d laughed about it later. A survivor.
And so I say to myself whenever yet another lifestyle change becomes imperative: Don’t sweat the small stuff. When my fine motor skills went on the blink and I burned my forehead with curling iron, I tossed it and vanity aside and opted for an easy-care blow-and-go hair style. When a physical therapist told me to stay off my bicycle because my balance had done a permanent falling Wallenda, I loaned the bike to a grateful graduate student. When low-heeled shoes became de rigueur for me, I made a few bucks selling my high heels to a boutique exchange. But, hey, I can still use my mascara. Yeah, I do poke myself in the eye with the wand more often than not. But that irritation is small stuff, too. Don’t sweat it.
The roadside of this particular trip is littered with such Burma-Shave style clichés and snappy little pick-you-up slogans: Somebody always has it worse. Fall down seven times, get up eight. Be grateful for what you can do. Plan for the worst, hope for the best.
That last is a favorite aphorism of Joseph Hartzler, the lead prosecutor in the Timothy McVeigh case who could be seen on TV zipping around in a scooter. Despite its Hallmark ring, it makes sense. Why my doctor told me that the next car I bought probably should be an automatic instead of a five-speed, in case my legs gave me difficulties, I readily agreed. That was eight years ago. My trusty car is now 11 years old and I’ll probably trade it in next year. For an automatic.
But hoping for the best and planning for the worst, as with any truly useful concrete suggestions, can still be a tough concept to wrestle with. For just as much as the physical problems, it’s the mental gymnastics that make this trip so trying. Don’t stress yourself, the experts say. So when an attack hits, I’m not supposed to fret about how much damage it is doing and how much function will return. It’s as if that beat-up old Ford stalled at midnight on a dark, wooded road in an area where an ax-wielding mad-dog killer is on the loose. Stressed out? Me?
But sometimes I’m caught by surprise, and the walls, the emotional ballast, come tumbling down. That happened just a few weeks ago, when I was taking my thrice-weekly health walk. Last year I could easily walk for an hour or more. On this particular day, I had to give up after 20 minutes. The limp set in and my right leg refused to cooperate with any more of this exercise nonsense. On the drive home, to my stoic personality’s surprise, I started sobbing—not gentle sobs, but big, gulping, have-to-pull-off-the-road-’cause-I-can-barely-breathe sobs. Nothing like slamming up against your own limitations to cheer you up. Nothing like realizing that “getting better” isn’t necessarily an option. For every loss, there’s grief, and M.S. can seem like a series of small deaths. I still mourn the loss of my balance, still look with envy at people who can run up or skip down stairs without a care. Now, as I struggle through leg lifts and see my other dedicated exercise classmates getting better, stronger, I realize another loss may be only around the corner.
But the rest stop I fear the most has a marker labeled “disabled.” Right now, I have what my co-sufferers sometimes call “invisible M.S.” If you see me walking down the street, I look healthy—shining hair, clear eyes, unbowed back. But I wonder what it will be like if I ever stop looking so healthy, if I need a cane or a walker or glasses with prisms or any other helpful, freeing yet obtrusive mobility aids. For just as our society has little respect for the elderly, it also fears and is uncomfortable with those who are disabled. And obvious disability, in the eyes of others, can become a defining trait, overshadowing personality and abilities. For some, you become nothing more than your disease.
I’m not ready to be defined by a disease. Nor am I ready to allow it to control my life. While I award anger, grief, bitterness and resentment their proper due, I realize that they are seductive hitchhikers; easy to pick up, hard to dump. And dangerous. Some fellow travelers are best avoided.
The other day, as I hurried to pick up some groceries, the entry to the store was blocked by an elderly woman using a walker. “Come on, come on,” I fussed silently. “I don’t have all day.”
My impatience made me smile. One day, I realized, I may be the person blocking the aisles, obstructing the fast lane. If and when that day comes, I hope another word becomes part of my identity: a survivor.