I Was Born Severely Deformed -- and I Made It!

I was born with clubbed feet and hands, a deformed face with an unusually small mouth and low-set ears, severe scoliosis, and knees that were bent back to almost 90 degrees. My diagnosis was a rare and devastating one: Freeman-Sheldon syndrome, a genetic condition that causes shortened muscles and bones. At 10 weeks old, I was admitted to the hospital for my first surgery—a knee release. The procedure was a success, but it was just the beginning of my draining and painful medical journey. I always say that I grew up in hospitals, and indeed, I spent the majority of my formative years inside those white walls and under those bright lights. By the time I was just 6, I'd had close to 10 surgeries to correct my bone and muscle contractures.

Believe it or not, I have fond memories of my medical days. Doctors and hospitals just became a part of my family's life. Some families bond by taking a trip together, singing songs, or telling jokes. My family bonded when I was lying in a hospital bed with a needle stuck in my arm. In fact, one of my best memories is of my mom and me in the hospital cafeteria. My dad and younger sister had just left for the evening, and my mom and I were sharing an ice cream sandwich. It was a simple thing, but in that moment, I knew I was loved, and I felt so close to her. When I remember times like that, I wonder if my family would be as close if I didn't have a disability.

I call ages 8 to 15 my "Ilizarov years." Because of my stiff muscles and bones, I would be put in an Ilizarov apparatus—a contraption of pins inserted into the bone that would slowly release the muscles and straighten my legs and feet. We were one of the first families allowed to go home with the Ilizarov: It was standard procedure back then for patients to stay in the hospital for four months of treatment, but my mom refused to leave me there that long, so she became an Ilizarov pro. She'd slap on a pair of latex gloves, grab a bottle of rubbing alcohol and a pile of sterile gauze, and go to work, meticulously cleaning every one of the 40 pins on the device.

In junior high, I had my most serious surgery to date: an operation to alleviate compression in my brain stem. One day, I suddenly couldn't swallow food. It was like my esophagus had just stopped working. I went first to a gastroenterologist and had a battery of tests—including multiple endoscopies—which ultimately revealed nothing. My parents requested that I have a spinal MRI; I'd had surgery to fix the scoliosis in my spine two years earlier, and they just had a hunch that my problem might not be digestive. Their instinct proved correct: I had a basilar invagination, a very rare condition. My spine was actually growing up into my brain stem and compressing it—when the doctors had fused the lower half of my spine in the earlier surgery, the top half had no place to go but upward since I was still growing. After the 14-hour surgery, I stayed in the hospital for a few weeks, part of the time on a ventilator, and then had to wear a halo frame bolted to my skull for four months to keep my neck still while it healed.

Three Jays

In high school, after nearly 30 surgeries, my life finally began to settle down. The doctors said they'd operated on practically everything they could, and I was in good health. I never thought I'd hear those words used to describe me, but here I was, 18 and finally free from surgeries and hospitalizations. As I crossed the stage in my wheelchair at graduation, I breathed a sigh of relief. Five years later, in May 2005, I graduated from college magna cum laude with a journalism degree. Now I'm a freelance writer and weekly columnist for my local newspaper.

As odd as it sounds, I'm thankful for my disability every day because it's the one thing that has truly taught me how fragile life can be, and to always cherish those closest to me. My disability has made me the person I am today. I think of my scars—and I have quite a collection—as a badge of honor. We all have disabilities, whether they are visible or not. We all have things we are forced to overcome in life. I've learned that it's not the disability that stops people from doing things in life; it's people who stop themselves. And I intend to keep going. Life is simply too short and too wonderful to do otherwise.

Melissa Blake, 25

Dekalb, IL

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