Writing and Multiple Sclerosis

My Left Foot: Why Have I Never Written About This?

Take me on a trip upon your magic swirlin’ ship
My senses have been stripped, my hands can’t feel to grip
My toes too numb to step
Wait only for my boot heels to be wanderin’

When I began Writer-Type, one of the things I said I’d write about was multiple sclerosis. It’s been almost six months and nada. Though I’m sure no one is paying enough attention to remember that, still, this puzzles me. Usually, I’m freewheeling in my writing. Nothing is sacred. I don’t shy away from difficult matters, for example, the Writing While Grieving newsletters. So what’s up? I’m on a mission now.

Imagine you are twenty years old and you wake up one morning to find yourself in a Kafka novel.

When Gregor Samsa woke up one morning from unsettling dreams, he found himself changed in his bed into a monstrous vermin. He was lying on his back as hard as armor plate, and when he lifted his head a little, he saw his vaulted brown belly, sectioned by arch-shaped ribs, to whose dome the cover, about to slide off completely, could barely cling. His many legs, pitifully thin compared with the size of the rest of him, were waving helplessly before his eyes.

"What's happened to me?" he thought. It was no dream.

I didn’t find myself turning into a cockroach, but my body suddenly became just as alien to me. You see, one of my legs was missing. I couldn’t feel it. It was like it had vanished. The only way I knew it was still there was when I reached down to touch it with my hand. My hand could feel my leg, but my leg could not feel my hand.

What’s happened to me? Tell me about it, Gregor. It was no dream.

I wouldn’t know the answer about my disappearing leg for several more years. The doctor called it a pinched nerve. He recommended a chiropractor. The feeling came back. Everything was normal. Just one of those things, I guess. Life went on. I finished college, finished grad school, and started teaching. And then, it happened again.

This time, a wide-eyed doctor said, “You’re going to the hospital.” They thought maybe it was a tumor pressing on my spinal cord. After a few days of tests—X-rays, a CT scan, a spinal tap—the doctors reached a verdict. Though this was before search engines, I already knew. I was married to a librarian. She knew her stuff. If no tumor, then likely MS.

A nurse came into my room. She was in a good mood. “Great news!” she said. “There’s no tumor.” When she saw my stricken reaction, her smile disappeared. The nurse didn’t know what the librarian knew. I told the nurse I was rooting for the tumor. At least with that, they could shrink it or maybe operate. This was 1986. With MS, there was no treatment beyond pumping you with steroids during flare-ups. The nurse quickly left the room.

After three days in the hospital, I was home again, but I walked like a drunk. Soon after I arrived home, I heard Dylan’s “Mr. Tambourine Man,” and when I heard him sing, “Wait only for my boot heels to be wanderin’,” I cried like a baby.

I quit one of my teaching jobs and focused on recovery. My wife and I had already been married for eight years, but we hadn’t had a child yet. My prognosis was bleak, so I told her she should leave me. She was young and deserved better. She stayed. She researched. She changed my diet. She found supplements that had some track record in these regards.

Have I ever mentioned how much I loved her?

After a while, my leg came back, good as new.

Two years later, my right arm went limp. I’m right-handed. I was teaching summer classes, and I had to write comments on student papers. I taught myself to scratch out targeted comments with my left hand, focusing on two or three things only, potential changes I thought might have the most impact. My students were wonderful to me. I learned something interesting that summer. My comments before had been too busy. Now, they were more effective.

That summer, my wife and I were hiking a trail in Acadia. It was difficult for me. I had to take it slow. It became a metaphor. I felt I was holding my wife back. It was the last thing I wanted to do. My goals from then on were to find ways to make up for whatever physical limitations I had by improving whatever I could in other ways.

Then came a glorious fourteen-year remission. During this time, I became a runner, a parent, a musician, I published stories, and I taught full-time. I didn’t even think about MS anymore.

That was the problem. Since there were no good treatment options when I was diagnosed, there was no reason to see a neurologist unless you had a flare-up. In fact, during my last appointment, my neurologist at the time cheerily said, “I hope I never see you again!” I took that to heart. I was well and fit and active and what was happening in the MS world fell off my radar. They had new drugs. I should have been on them. I wasn’t. I’m a dimwit.

And then I started to limp again. I got on meds. I gave myself daily injections for years and remained stable and even improved, but unlike with my other flare-ups, this time, I didn’t come back all the way.

Now I take a pill every day, which has continued to keep me stable. I’ve been so for over 20 years. This means no new lesions appeared on my poor, battle-scarred brain during that time. In my current state, my left side is weak. I’ve lost some sensation in my feet. It feels like I’m wearing socks even when I’m not. My neurologists say MS calms down with age. They say I could probably even stop taking meds now.

Fuck no.

I try not to think about it, but my adult life has been defined by limitations, by the things I can’t do. I’m reminded all the time, though. Because of my sexy walk, when people see me, they know something’s up. People ask if I have a torn meniscus. (If only.) Theater ushers let me know where the handicap restrooms are. Things like that. But I’m a lucky man.

I’m a lucky man because I can walk. I no longer need a brace, and I only use a cane now if I’m walking in a crowd or over rough terrain.

I’m a lucky man because I can drive. The paralysis is on my left foot, so my right foot is free to command the pedals.

I’m a lucky man because my right hand is normal now, so I can use a pencil or a screwdriver or a paintbrush and can fix typewriters and other things around the house.

But there are things I can’t do. For instance, I can’t remember the last time I put on pants while standing up. No biggie, I guess, but it pisses me off every day.

What I can’t do is run. I miss it so. Sometimes I dream I am running and I don’t want to wake up.

What I can’t do is play guitar like I used to. I’d give anything.

But I’m a lucky man. What I can still do is write. It’s my magic swirlin’ ship.