I Am One of 100 People Living With Freeman-Sheldon Syndrome, and This is What I've Come to Realize True Beauty Is

I was sure my physical disability was my embarrassing beauty mark. No, not beauty mark. Ugly mark.

Oct 12, 2012 at 11:00am | Leave a comment

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“I’m so ugly,” I stammered in front of my oversized bathroom mirror one June morning.

I didn’t mean to utter the three simple words. The declaration simply came out faster than my tongue could reel it back in and hide my transgression from Girl Empowerment.

As I washed my hands, the wet streams running over my fingers as water droplets bounced against the white porcelain of the sink, I couldn’t bear to look up and see her: Me.

“Oh, honey, you’re so cute,” said my mother, trying to reassure me in her calming mother tone. But her words brushed against my ears like the kiss of death, like telling someone they have a good personality -- which she proceeded to do two minutes later when she found me still in the bathroom analyzing my features. The mirror, coupled with four high-watt light bulbs overhead, illuminated every tiny flaw. My downward slanting nose. My small mouth. My deformed hands and feet. And my electric wheelchair that seemed to eat me alive, taking center stage in the story of my life.

It was the first day I felt like the board in the game "Operation," where each body part is labeled and highlighted for the entire world to see. When you touch a body part the wrong way with your tweezers: BUZZ. You’d just made a giant mistake. 

It was also the day I learned to fear that bathroom mirror –- the day I began my feud with the glaring image staring back at me. Who was she? Where did she come from?

I'd been envisioning my wedding day since I was in grade school. My flowing white gown. The paisley pink dresses for my bridesmaids. And a handsome man waiting to take me in his arms at the end of that long aisle dimly lit with scented candles and lined with rose petals.

But somewhere along the way, I got lost. There was an obstacle standing in the way of me and the man at the end of that long aisle. After all, what man could ever love a woman in a wheelchair, I thought? My physical disability was my embarrassing beauty mark. No, not beauty mark. Ugly mark.

I was born with Freeman-Sheldon Syndrome, an extremely rare genetic bone and muscular disorder; there are only about 100 reported cases, and I exhibited the classic symptoms: small mouth, low-set ears and joint contractures of the hands, feet and knees. Doctors’ offices and cold, unfriendly hospital waiting rooms marked my childhood like other children play Little League in the summer.

They ran around the grassy bases. I zoomed down the white hospital corridor in my wheelchair. They sipped Hawaiian Punch to keep cool. I lay in a hospital bed with an IV in my arm to replenish fluids after I became dehydrated. They skinned their knees as they flew in for a home run, showing the bruise off for weeks. I amassed some 20 surgical scars by the time I was 10, trying to hide them from the world. Other children cheered when they won the big game. I cheered when I saw my house for the first time after a long surgery. I was home. I’d won, in my own little way.

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Growing up, I always envied my younger sister, Janelle. She was the pretty one of the family -– Swedish, flowing blonde hair, crystal blue eyes, straight and slender arms and legs and a body that was completely disability-free. Like a Greek goddess, she possessed an air of poise and perfection, and everyone commented on how beautiful she was.

“How’s that looker daughter of yours?” my mother’s uncle would ask on the phone. We all knew what daughter he was talking about.

People would follow up their praise with compliments for me, but they always somehow fell flat. A comment here about my bravery during my latest surgery. A pat on the back there for my third consecutive semester of straight As. I graciously accepted, forcing the beginning of a faint smile across my face, but I felt an arrow pierce the heart of my burgeoning young womanhood.

Like any young girl, I’d had my fair share of crushes. There was the blonde boy in my second-grade class about whom I used to daydream on a daily basis, and my red cheeks matched the color of my hair any time he’d walk by. There was the boy on my high school newspaper. We were co-editors, and I spent meetings studying intensely his piercing eyes and wavy brown hair.

And then there was Him. My first love. I was sure of it. It started innocently when I was 13, where I referred to him as “a major babe” in my journal and morphed to deeper feelings of envisioning myself growing old with him. I found myself falling for him. Hard. I analyzed every chance meeting we had in those tattered journal pages. What did his body language mean? What was he wearing? How long did we talk? What did he say? How did he say it?

But I could never muster the courage to tell him -– or any of these other crushes –- how I felt, not because our differing personalities may have gotten in the way, but because I could feel my disability already had. And I was crushed.

“Why am I 20 and never had a boyfriend?” I wrote in my journal in 2001. “No boy has ever been interested in me. Am I deficient in some department? Do I turn guys off with my disability? I really want to experience true love, but I wonder if that could ever happen to someone as ugly and undesirable as me? I want guys to take me for who I am and look past my disability. Can't they find someone to love in this invalid body?

By the time I transferred to a major university a year later, my childhood bubble finally popped. I couldn’t run. I couldn’t hide. And what I could see made me feel even more exposed. Hordes of beautiful blondes scurried around in their tank tops and flip flops. They had perfect, slender legs. They had cute tan arms. And on those tan arms usually hung an equally tan boy’s arm.

Couples canoodled by the fountains in the center of campus, laughing and giggling. And there I sat, literally, in my wheelchair, watching romance blossom right before my very eyes. It looked so easy. I was left feeling, well, empty.

I’d grown disgusted with my body, so I shifted my focus to my mind. I excelled at all things academic, and by my junior year of college, I may not have had a fling with the quarterback, but I did have a shelf of shiny accolades. A 3.9 GPA. A plaque for the Best Damn Reporter on my college’s newspaper. A certificate for being an outstanding woman student. But I still felt alone.

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I had a beautiful mind. But the little girl in me –- the one who sat on her bed and dreamed so long ago of the flowing white dress –- still wanted so desperately to feel pretty on the outside. I wanted to feel that rush, that excitement, that thrill of love. As a woman, you want to feel desired. My physical disability didn’t change that fact.

There’s a large lagoon in the heart of campus. I must have walked around it hundreds of times, darting under the weeping willows, or feeling the gnaw of nostalgia when I passed a group of preschoolers leaning into the water to feed breadcrumbs to the squawking ducks. The ducks. I finally saw them for the first time one day. As the early summer air breezed past my cheeks, I stopped on the grassy banks for a moment to observe those winged birds that flapped and fluttered in the shallow water. There was always one duck the flock seemed to leave behind as they paddled toward the majestic geese. The poor duck looked all alone and lost, like he was somehow desperately searching for his place in the world. I felt an instant connection with that lonely duck.

And that’s when it hit me: I’d spent so many years feeling ugly on the outside and looking for validation to make me feel loved on the inside. When men never seemed to take an interest, I assumed it must be me. There was something inherently wrong with me. My nose was too big. My eyes were lopsided. My wheelchair stuck out like a sore thumb, scaring them all away.

And my feeble attempts at focusing on my mind had merely been a way to avoid my body, something I’d come to view as an “ugly mess.” I’d immersed myself in books and papers and tests as a way to distract myself -– and way to distance myself from my body and try to convince myself that my mind was somehow separate.

I wasn’t just coming to terms with my looks, I now realized. I was coming to terms with my disability and what that meant for my life. For so long, I’d tried to run away from my disability. After all, my disability had become a wall that got in the way of everything. But it’s not that men were uncomfortable with my disability. I was. And I had been afraid to admit it to myself.

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A few years later, I stood outside on a crisp fall Midwestern morning, and my attitude matched the promise of the changing season. From my vantage point in my driveway, I could see the yellow ball of sun blanket the Earth in a warm glow. For the first time, I was glowing, too. I finally realized I’d been looking for love in all the wrong places.

All I wanted was for a man to look past my disability and see the real me –- she was tucked in there just waiting to come out of her shell -– but it had to start with me. The next time I looked in the mirror, I started to notice my wavy red hair, my freckles and my piercing green eyes. But what stood out most were my surgical scars, not as a hopeless reminder of my differences, but as a badge of honor. A symbol of all I’ve overcome –- even a symbol of what makes me beautiful.