A Reflection
by Cara D., Portland, CT
By Ranna C., Monmouth JCT, NJ |
|
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.
