A Teen's Battle with a Rare Disorder
A Teen's Battle with a Rare Disorder
An inspiring story of hope and faith
It was a chill November day on the golf course, and the wind was whipping. I flipped my jacket collar up and bounced from foot to foot, trying to warm up. I couldn't feel myself bounce, though. It was the strangest thing: My big toes had been numb for a couple of hours now. "Chelsea, it's your putt," my golf partner said, bringing my attention back to my ball nestled on the eighteenth green.
"Okay, thanks," I mumbled. My mind was still fixed on what was wrong with my toes. It's probably just the cold weather, Chels. Or maybe those new tap shoes for the school musical. I'd been in tons of plays over the years, and not once had a new pair of shoes made my feet numb. Pinched, maybe, but nothing like now. It isn't really that cold, Chels; it's just windy. Plus, I was fine the other day when I was pulling weeds in the garden, and...
The inner dialogue stopped thanks to a sharp pat on my back. "Way to sink that putt," my friend said. "You won!"
Had I really just putted? I didn't remember taking the club back or following through on my stroke. I guess you're a pretty good golfer if you can drain the winning putt without being aware of it. Maybe it was just growing pains. I was, after all, only 14.
At home that night my big toes still tingled. I told my folks. Mom called my pediatrician the next day and told him what was going on. "Don't worry," he said. "It doesn't sound serious."
But we did worry. The numbing sensation spread to the rest of my toes. Mom made an appointment for me to see my doctor. He ran me through all sorts of tests, but couldn't find anything wrong. "You probably pinched a nerve," he said. "Just don't overdo things."
Well, that was probably good advice. Along with my golf and the school musical, I was also playing Mary in our church's Christmas pageant. Just to be safe, my doctor referred me to a neurologist. More tests. The neurologist couldn't find anything wrong, either.
On December 3, things took a turn for the worse. My phys. ed. teacher had us do a bunch of different running exercises. I'd always been a fast runner, always at the front of the pack. That day, though, I trailed behind everyone. I almost got lapped!
My teacher thought something might be wrong, and called my parents. Mom came to pick me up right away. She told me later that, as I walked to the car, it looked like I was walking with big flippers on my feet.
Our church's Christmas pageant was that very night. Mom wanted me to stay home, but I knew I couldn't, no matter how hard it was to walk. I asked God to give me the strength to get through the show.
That night the guy playing Joseph asked, "Are you really going to be able to do this, Chels?"
"Sure! I'm fine. Really," I said. I put on my happy face, but my insides felt like scrambled eggs, which was better than my feet; I couldn't feel them at all.
"I'll be right by your side the whole time," he said. And he was. I was terrified, though. I sweated so much that my church family could tell something was seriously wrong with me. They'd seen me perform before; I'd never been nervous in front of people.
Over Christmas break, I had to get a walker—I couldn't stand on my own. I got severe tremors in my hands and arms. Sometimes at dinner I couldn't hold on to my fork. It would fall from my hand and clatter onto the table. I'd feel like an elderly person in a nursing home who couldn't feed herself. And still the doctors couldn't tell me what was wrong. They were baffled.
I went back to school with my walker. "What happened to you?" everyone asked the first day. I tried not to sound too serious, but my closest friends sensed how bad off I really was. Then, in the hallway, the walker slid and I fell right on my rear. Someone had to help me up. That was it for school.