I returned home after my first year in college to discover my younger sister had turned gorgeous. This was a disappointment, but not an unexpected one. My mother's tennis legs legacy was sure to flourish in one of her two girls. And as I grew pasty in my college's library the cruel nature of disproportionate genes became obvious. Still, I held on to an unlikely hope that my own raucously fun and sassy instincts were latent—waiting to explode out of my spine like shingles: Yeah, Park, you passed out under a lamppost after leading the party in a group sing-a-long of "99 Red Balloons Gone By". A party-girl.
Then my sister opened the front door. She's not much of a hugger. My sister propagates the peculiarly southern American affect of extending her arms in a large, hovering loop around your shoulders while she pats your back in fast, light spurts. I, however, inherited my mother's affectionate tendencies: namely the sloppy, groping Upstate New York hug. I lean in for a kiss on the lips while my sister peels backward, away from my puckered mouth and wiggling fingers. We compromise as I grab her around her waist and she taps my arm. This struggle lasts a moment shorter than any proper hug and she stands back to let me have a look at her. Suspicions confirmed.
"You grew your hair out," I remark. "
Yeah, I have all these split ends now, but I really like how it goes like this when it's out of a pony tail." She pulls her hair over her shoulders, letting it fall around the contour of her breasts. I had just gotten my pixie haircut trimmed into what some might call "butch," prompting friends to direct comments like "but your hair grows really quickly!" at my practically bald head.
That I was also dealing with pimples as an eighteen year-old and had just starting using a wheelchair lessened my congratulatory sister "Welcome to Womanhood—Hot Hot Womanhood" reaction. I mean, she had bloomed. Growing her hair out acted as catalyst to disappearing baby fat and attentive grooming. She had worked on her bathing suit-strap placement and a thin pale line circumnavigated the back of her neck like white gold. She was young and gracious and subtly aware how sweet words spoken through straight white teeth are delicious. Sweet sweet things, those words. Those teeth.
It was too hot to talk outside on my homecoming day and my sister followed me through the front door: a true enactment of age before beauty.
My family built our house in anticipation of wheelchairs. Soft, graded lips along doorways, large turn-around spaces. Hand-held shower nozzles. Careful planning that I readily projected into the next decades of my life. Mobility devices, get away! My parents and their contractors listened to The Professionals, however. "We don't know how long she will remain mobile," concluded the doctors. And they were right on both implications—the ominous tone and the fact that they didn't know. They didn't know how quickly I would need to use a wheelchair. Couldn't give an intelligent guess to help prepare a little family for the big surprises of a genetic degenerative disease.
I remember when my disease became my sister's disease. I spent the majority of my fifth grade year in UNC Chapel Hill's neuromuscular wing—pediatrics? I don't remember. Hooked to an IV, I spun a rats' nest in my hair and stained my teeth red with too many cinnamon candies. Waiting for results.
The Professionals conjectured about my gene's relationships to my sister's genes. She went to the hospital for testing. My childhood fear peaked one day at my house—far away from the hospital—when my mother hung up the phone, pulled my sister and me into her bed and cried for a long, long time. I thought my grandfather had died. We stayed in bed all day, reading chapters from Laura Ingalls Wilder's life until my dad came home from work and joined us under the covers. We skipped dinner that night.
"Really, you look great," I say after I comment on the length of her hair.
"Thanks; you do, too—" she offers the comment so breezily, but I feel sincerely undeserving. Not jealousy, but a pride slightly (barely) envious of her accessible, immediate attractiveness. "Last week, this guy told me I'm pretty like a model," my sister said, looking at her reflection in the mirror we share in our bathroom. "Ha!" I said, but felt no pang. She said the statement with a smile so confident and curved I thought she had complimented me. My sister believed in her good appearance, and she and I pledged our allegiances to it in front of our mirror.
I'd gotten the model comment once or twice, but mostly in response to my five-ten height and an interesting (read: strange) sense for clothing. I used an assignment for a high school English literature class as an opportunity to make a pass at Elle Modeling Agency, writing their executive office a letter about my future success as their first disabled model. I really pushed it—I think the ending "awaiting your response in size two leather pants. Sincerely, Park McArthur" got me the B+ assignment grade.
My mother tells a story about traveling to Poland for her high school field hockey championships and sharing a bus with another American team—boys' soccer. Everyone was surely outside of North America for the first time, in a (newly) post-Soviet country for the first time, and without parents for, perhaps, the second time. The boys' team boarded the bus after the girls, filling in vacant seats. A boy approached my mother's double bus-seat, asking her neighbor to move so he could introduce himself. "You are the most beautiful girl I've ever seen," he said.
She dated this boy for the rest of her senior year of high school, making hour-long weekend trips to see him. Then, she made plans to go south for college and he began getting paid to wear underwear for advertisements. She ends with laugh: "if he had been your dad, you would have been a lot dummer."
The southern college she decided to attend had only recently invited females to live and learn alongside their male peers. Things were joyful. One Spring day, my mother walked past my dad.
I began my first year of college twenty-four years after my dad and twenty-six years after my mother graduated from the same college. I rolled past boys in a new electric wheelchair—a prop great for Halloween costumes as Christopher Reeve, but useless (injurious, really) for meeting boys. I went on two dates, wrote an essay that relied heavily on Susan Sontag's On Photography about why we need beauty, and began a campaign to ugly myself up. I used this phrase to distance myself from girls (my friends) who stood in front of their floor-length mirrors, looking at themselves at all possible angles. It takes about twenty minutes to do this examination. Rather, I wanted to endear myself to an ugly, strange beauty. I wanted androgynous clothing to sex up my body in ways different than tight clothes always did in a boring, expected manner. Then I came home to my lovely younger sister.
She only continued to grow more attractive; I found styles that worked for me, too. During my senior year at college, my sister began her first term at the same institution. Our disease has progressed in each of us at different velocities and though I entered college in a wheelchair, she continues to walk with a little jolt only—leaning scoliosis sideways, a dangerous propensity to fall. Strength and balance: so closely related. She uses a golf cart and her car to get from building to building, avoiding stretches of long walking distances, and one day, the police towed her car. They had discovered that the handicapped parking-place tag hanging from her rearview mirror was two years out-of-date. I keep the current (legal) tag to use for myself.
"They didn't even believe I have a disability. I was like, 'the disease, muscular dystrophy, and they said, 'you can pick your car up from the garage off of Exit 28 going south.'"
"Yeah, it's like unless you have something obviously wrong with you, you're not disabled! What—Do they want me to come in with a wheelchair, or something?"
"Seriously," I said, but thought only—
Give it time. Give it time.
archive - issue 11