Against All Odds: Allison Moore

Devastated by serious health problems, these astonishing women reclaimed their bodies—and their hopes for the future—by taking on challenges that seemed impossible. Here, see how a strong spirit can triumph over even the most weakened body. 

as told to Shelley Levitt
allison moore CMT picture
Photograph: Ben Hoffmann

Allison Moore, 46
New York City
Medical Challenge: Neurological Disorder

“I’m sorry to tell youthis over the phone,” the doctor said, “but you have cancer.” I was 29, married for just six months and training for my first New York City Marathon when I got the call telling me the golf ball–size lump on my leg was Ewing’s sarcoma. After one cycle of chemotherapy, my feet were flapping and my hands were so weak, I couldn’t hold a pair of chopsticks. The oncologist said neuropathy was a typical side effect of chemo and would go away on its own.

Instead, it got so bad that I had to drag my feet to move forward. For two and a half years I saw doctor after doctor, until a specialist diagnosed a neurological muscular condition called Charcot-Marie-Tooth, or CMT. It’s a progressive, hereditary disease—my dad has it, too—that ravages the nerves in the feet, legs, arms and hands. Chemotherapy is actually contraindicated for the disease, and that’s what triggered the rapid onset of symptoms. I was devastated.

In the midst of all these health problems, I became pregnant. My gynecologist berated me for being irresponsible. Needless to say, I found another doctor, and when I told her I had CMT, she said, “So? What’s the big deal?” Three years after my first son was born, I had my second. I used their strollers as walkers, but I still fell constantly. In 2004, I got fitted with leg braces that go from my knee to the bottom of my foot.

Throughout all this I continued to exercise, because when you have a disability, you must hold on to the function that you have; it’s truly use it or lose it. One of my toughest moments was four winters ago, when I joined a ski clinic for people with impairment. I used to be an avid skier, but no matter how careful I was, I kept falling. I cried for three days. That was a turning point; I realized I really am disabled.

In 2009 there was another turning point, this time for the better. I took my first indoor-cycling class. I was able to pedal without my braces on, and that felt so good, I cried. I began indoor cycling four or five times a week at B-East Real Ryder, a new studio in Amagansett. It gave me the confidence to go back to bike riding.

Then I got bold and decided to compete in New York City’s 42-mile Five Boro Bike Tour last spring. Everyone told me, “You know, you don’t have to finish.” But I was determined. It took five hours to complete the race, and though parts of it were really tough, I never felt any trepidation. Instead, I kept thinking, Oh my God, I’m really doing this! I was pumped. I felt better than good: I felt normal. That bike ride restored my sense of self.

My legs are atrophied from the knees down, and my hands are so weak, I need help buttoning a shirt. Still, I try to focus on what I can do. I really believe that if you can picture something, you can make it happen. And what I’m picturing these days is finally doing that marathon I trained for 17 years ago.

Click here to read Alyssa Phillips story.

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First Published January 4, 2012

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