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Running for 'the lost me' Marathons become healing events for a man with MS Tuesday, May 02, 2000 By William M. Stoddart
With the exception of climbing a serious mountain, completing a marathon is probably the most difficult physical challenge a person can choose.
Why does anyone choose to run a marathon? It hurts to train for it, it hurts to run it, it hurts afterward. But they do it for the same reason they do all else: reward.
I run marathons because those sometimes painful miles of training and racing are all that stand between me and the incurable disease of the central nervous system, multiple sclerosis. The disease that is marked by progressive destruction of myelin, the fatty material that covers the nerves of the body, works so hard to control me. There is no one else to save me anymore. The asphalt or paths, the trees, the ornery squirrels throwing nuts at me, the deer, the fierce cold or pounding heat, the sound of my footsteps in the silent dark -- all serve as church and counselor and neurologist and confidant. I tell them everything.
I have no more faith to be ground into scars by people, by institutions. I have no more patience for scripted words, their echoes too weak to challenge my problems.
And I have not the time nor emotion for scenarios like this:
Last fall, I called my neurologist's office to set up an appointment.
"[The doctor] moved away," the receptionist said. "Who referred you?"
"Who referred me?" I asked, shocked. "I'm a patient there. You pulled up my name. Why do I need a referral? I still have MS. There are other doctors there. I'm experiencing symptoms I've never had before. I'm concerned. I need to tell a doctor about this."
"Well, you haven't been here for awhile."
I spiked. I'd experienced this scene far too often: Punished for fighting the disease on my own.
I'd already selected a backup doctor, one known for his work with MS. I dialed the number.
"We're booking for May of 2000 right now," the droid-lady said.
"What?" I whispered. "It's November!"
"That's all I have."
I lowered my head, and chastised myself for thinking I'd net a timely appointment. Even my first appointment in 1986 was set a full two months after my call.
"No thanks," I said, and hung up.
So I seek treatment from a power I can trust. Running is there when I need it to be. Running never asks for a referral. It never puts me off for a half year. It will never tell my secrets nor betray me for gain. And as I invest more of my trust and time and strength and emotion, running, as it has from the beginning, in bits and pieces, will cure me.
Yes, certainly since 1986 when the MS was discovered, people have been there for me. My wife and daughter, one true friend, the Office of Vocational Rehabilitation, the Pittsburgh Employment Alliance -- all, in their time, were there for me.
My wife and daughter still are there. My wife received a citation from the House of Representatives/Commonwealth of Pennsylvania for her courage and pain through all of this. Our child, Abigail, a crutch at my side since she was 2, is a quality student, a leader, an artist (a published poet, dancer, musician) -- a teen far older than her years. She goes places with me (the grocery or department or whatever stores) when she'd rather not, to help me with the list and buggy, to read the tags, to separate the currency since I can't feel it very well. These women are a story; not heroes as those at Normandy, but heroes, surely, in their way.
But the love and support of my wife and child, mighty as they are, are no longer enough. The focus of my problems is different, not so physical, not so easy to see or tell. I still drop things like when this all started, still can't read my own handwriting at times, look pale and tired when the fatigue sits atop me, still don't stride evenly when I run, still go numb, still stumble up steps, still have problems swallowing and speaking, still can't see well all the time, still lose control of certain facial muscles, still --
But, I have problems thinking now, with memory. I have discovered new psychological lows, have lost the map to many highs and seem to recall having personality traits I can no longer produce.
I seem to have lost a great chunk of myself.
Ironically, my running started over my wishing to lose a chunk of myself; a physical chunk.
In 1991, five years after the MS diagnosis, nothing seemed to be going right. I was angry, and I was gaining weight. The fatigue was running over me. I needed to take control. I asked anyone who would listen, What if I pushed myself through these bouts of fatigue instead of retreating, resting, when they hit? What if I forced myself to get stronger, made it harder for the MS to manipulate me? What if, along with a new diet, I started an exercise program? With the exception of my wife and daughter, the support for my theory could be counted on one fist.
I did it anyway. Together with a low-fat diet, I started walking. Soon I was running a bit of the way, this tree to that corner, this corner to that corner, this mile, until, after three years, in 1994, I could run three miles without stopping.
The weight down, the fatigue beaten back somewhat, more confident, I entered and finished a 5K race. It was rough, and I swore, just after the finish, that I'd never race again. I did, though, several times.
A pill form of a drug called Copaxone for victims of relapsing-remitting MS is being tested at sites around the world, including Pittsburgh. Click here for that story.
Three years after that 5K race, came a 10K -- 6.2 miles. It was the last 10K held with the Pittsburgh Marathon in 1997.
But over the next year, I edged my miles up and up, thinking all the while, Wouldn't it be something? Me and MS, running a marathon with everyone else? No special category? No mention at all? My wife wasn't pleased and was relieved both times I temporarily resigned from the quest. But I couldn't stay away. Yes, there was pain, and the MS, mostly through fatigue, fought desperately to keep me from running that far. But when I had that dragon of a marathon to chase, I didn't think about poor me so much. I didn't allow the disease into my head so much. There wasn't room. After all, there were already 26 miles, 385 yards in there.
I finished the 1998 UPMC/City of Pittsburgh marathon in four hours, 19 minutes, 7 seconds. When I crossed the finish line, I didn't shake my fist or jump or dance or anything close. Once I realized I could stop running, I walked while drinking from the cup of water I accepted, then stood dazed and awed by the true measure of 26.2 miles. I didn't think anything like, I beat it! I thought about how lucky I was to be standing there.
From nowhere, a young lady placed a finisher's medal around my neck. "Congratulations." I nearly cried.
Completing that first marathon was a treatment like no other. Despite the trials, I became addicted to the healing. Balancing the cautions proffered by my wife with the unrestrained backing of our kid, I continued training at a level consistent with long-distance running while I searched magazines and the Internet for curative races.
In November of 1998, I ran the Columbus marathon.
In May of 1999, the UPMC/Pittsburgh again.
And in September of 1999, MS and I completed the Air Force Marathon, Dayton, Ohio, in 3:55:28.
The marathons have made me stronger, more sanguine. But the lost chunks of me have not returned. And I am not looking for them anymore.
The running drives me and distracts me. I think, I vent, I mourn the lost me. I wish for answers, search for them, too. I look around and enjoy the creatures, the trees, the scents, the blotches of light, even the gray clouds of near-frozen breath in the pre-dawn dark.
And I hear my footsteps. I am so fortunate.
William M. Stoddart, a free-lance writer in Brentwood, has registered to run Sunday's UPMC Health System/City of Pittsburgh Marathon. It will be his fifth marathon.
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