by Cara D., Portland, CT
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Staring into the mirror, I fingered my long strands of hair, watching them fall out. My face was puffy and moon-shaped; the drugs made me retain every drop of water I consumed. I was only in first grade. My mother encouraged me to drink milk shakes to stay hydrated while my father wanted me to go for long walks to lose weight. My sisters didn’t want to play with me because I was always hooked up to an intravenous.
That was the day I broke the mirror. In a fit of fury, I threw a paperweight into my reflection. The glass shot back at me, hissing through the air and landing on the carpet. Unfortunately, I hit the ground after the glass.
My mom heard the noise and ran upstairs to see my fist bleeding, shards of glass reflecting my sobbing image a thousand times, each radiating pain and loneliness. Without a word, she scooped me up and carried me to the bathroom, cleaned my cuts and hugged me.
I’ve been on drugs since first grade, except for a one-year remission in fourth grade. I don’t have cancer, though, I have an auto-immune disorder called chronic inflammatory demyelinating polyneuropathy. It’s in the same family as multiple sclerosis, but affects my arms and legs, not my central nervous system. My antibodies attack the myelin sheath surrounding my nerves, making me weak.
Without medication, my heart would grow too weak to beat, and I would die. I still have trouble walking and collapse easily. I can’t complete simple tasks like unscrewing toothpaste caps or opening soda tops. Only three people have been diagnosed with CIDP in Connecticut in the last 12 years - I am one of them, and the only child.
I fear the milestones that most people look forward to: college, because my inability to have the necessary immunizations presents a challenge in enrollment; marriage, because I fear the day someone tells me they want to spend their life with me because women with CIDP are apt to miscarry, have stillbirths, or lose the baby shortly after birth. Attempting pregnancy also puts us at risk for relapse and immune-system crash, or death. Perhaps worst of all, I am frightened by my birthday. At 16, my life is probably one-third over. CIDP and the drugs usually are coupled with heart failure in your early fifties.
When I was diagnosed, I loved sports and played basketball, soccer and T-ball, swam and danced. When my strength began to diminish, I stopped playing sports and took up the piano, clarinet and singing. I also began acting and continued dancing. Soon I gained confidence in my theatrical ability as well as my appearance.
I’m a sophomore now and still on medication, but the doses have been reduced and I’m stronger. I still shake a lot, and I’m not very strong, but I’ve grown so accustomed to theater that no one can tell. When I stand on stage, I shed the body that holds me back. I feel graceful and talented. This fall, some of my classmates came to see me in Shakespeare’s “All’s Well That Ends Well.” I was to play the part of Countess Rousillion, a new role for me. I had never played an older woman before, much less royalty, but I wasn’t nervous. The more friends I have in the audience, the better I do. Everyone backstage felt my excitement and it spread like fire. It was our best show.
After we took our bows, I stripped off my corset and skirt, switching to jeans. As I ran to greet my friends, they crowded around, hugging and congratulating me. I was going to lunch to celebrate with the rest of the cast and crew. Tradition is tradition, so I danced up the stairs on the bright-colored clown feet, making my way to the dressing room. I paused by the mirror to pull my hair out of its gold veil and smiled at my reflection, my face glowing with happiness. I’ve come a long way in my struggle, and I wouldn’t trade it for anything. Through the experience, I have gained two of the greatest supports in my life: theater, and a reflection I am proud of.