Dec 1, 2002
Real Living with Multiple Sclerosis
A FRIEND RECENTLY brought me a new pair of thick, white sport socks. Printed on the sides of the socks were "MS 50" and "2002." Everyone in Colorado who registered for the 50-mile bike ride to raise money for the National Multiple Sclerosis Society (NMSS) received a pair of these socks. In July, my friend's husband pedaled from Loveland to Estes Park and back in 2 days. The socks reminded me how, about 17 years ago, I rode my first and only half-century (50-mile) bicycle ride to raise money for the NMSS. My mantra at the time: Pedal, pedal, pedal, slow and steady, no one knows, no one knows.
My life has changed since then. I no longer deny my disease. I dislike but accept that I have secondary progressive MS. Bike riding is no longer an option. I have no strength in my legs, and spend my time in a wheelchair.
Road to Denial
In 1985, denial of my disease was primary for me; raising money and bike riding was secondary. Even when exhaustion overtook me, as it did during the 50-mile bike course for MS, I chalked it up to a lack of physical conditioning. My friends and I enjoyed the fact that riding bikes for hours and mile after mile required serious conditioning. Whenever I rode, however, no matter how much I trained, hills grew steeper and flat farmland stretched tediously ahead for miles.
At the end of the 50-mile ride, I staggered to a grassy spot and fell to the ground in an exhaustion-induced near-coma. It was a well-- deserved rest!
My coordination and strength had maintained for 5 hours, and now after 30 minutes of nonactivity I sprang to my feet and joined other cyclists for a spaghetti meal provided by a sponsor. While we talked and joked, the image of a white line on sparkling asphalt stayed etched in my eyes.
Once again, I had fooled my disease, and my friends.
Reality Sets In
A few years later, still wanting to trick my MS, I took my last bike ride. My husband and I rode around the neighborhood, exercising the dog. I couldn't stop the bike for fear of losing my balance and falling. Fortunately, my husband somehow lifted me off my moving bike, thus preventing a fall. This time my MS wouldn't be deceived.
I worked relentlessly to maintain a semblance of physical strength and denial of my MS. For 5 years, I returned to teaching special education in public school. I tried to hide from my reality. Coordination and strength weren't required. Many nights after teaching, I exercised on a stationary bike. I hoped I would ride my 10-speed bike again.
As my denial continued, visits from local firefighters and paramedics became a way of life. While visiting my mother for a week in Phoenix, I fell in the bathroom. My mom, terrified and helpless, waited for local firefighters to answer her 911 call. In minutes they arrived, sirens blaring, and followed my mother down the hall, slapping their heavy black boots on the carpet as they snapped on latex gloves. I slumped in a corner of my mother's bathroom, shivering and nude. I was chagrined by my state of undress, but it didn't seem to bother them. They dressed me and lifted me onto my electric cart. I gulped my embarrassment and pride, like horrible tasting medicine, assuring myself I would never again see these firefighters.
At home, in Denver, my aide, unable to lift me from the floor, dialed 911. Once again, I sprawled half-dressed and twisted on the bathroom tile. Two fire trucks, speeding down my street with their earsplitting sirens crying out, alerted the neighborhood to my dilemma. Eleven firefighters, dressed seemingly for combat, rushed into my house. Two of them gracefully picked me up from the tile and sat me gently in my recliner.
From Denial to Acceptance
I no longer function in denial. Looking back, friends and family would have given me much support, as they do today. The only person hurt in my "fiasco of denial" was myself. I had fooled no one, but my fears of disease kept me bicycle riding, and my family and friends supported my illusion of having no weaknesses.
Cycling is no longer an option for me. Funny and caring firefighters
and paramedics unknowingly helped me transition from denial to acceptance
of my MS. Fortunately, I now can write and share some memories of them
and of my biking days.
© 2002 Real Living with Multiple Sclerosis