My mom is a teacher. She finds a lesson in everything. I was watching Sesame Street by my second birthday so I’d learn my ABCs and 123s. Our weekly family trips to the library began when I was 3. And my mom had my sister and me spotting brown historical markers with childlike enthusiasm on family vacations by the time I was 6. For her, life was all about learning. But the biggest lesson she instilled in me: I never let my disability define who I am, and I never forget what is important in life.
I was born with Freeman-Sheldon Syndrome, an extremely rare genetic bone and muscular disorder; there are only about 100 reported cases. There is no prenatal test for detecting FSS, so my parents were expecting a healthy, bouncy child. But when I was born, doctors knew something was wrong. In 1981, little was know about FSS, but I exhibited the classic symptoms: small mouth, low-set ears and joint contractures of the hands, feet and knees. It took a week for the doctors to give my parents a diagnosis, and I can only imagine how scared they must have been, but from the beginning, they vowed to be strong and determined – a trait they passed on to my sister and me.
MORE JUICE AFTER THE JUMP…
At birth, my knees were bent more than 90 degrees, and I had my first surgery at 6 weeks old to correct them. This surgery signaled the life I would come to know in my childhood. My family and I settled into a routine of hospitals and doctors in Chicago, 70 miles west of my home in DeKalb. I’d had 26 surgeries by the time I was 15. There is great variation in how FSS affeacts people, but the majority of my surgeries has been to correct bone and muscle contractures. I would be put in an Ilizarov, 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 for treatment, but my mom’s comment to the doctor was, “My daughter will not be laying in a hospital bed for four months.” So each day at home, she became my nurse. Laying out a bottle of rubbing alcohol that reeked through the house, setting aside a pile of sterile gauze and slapping on a pair of gloves, she went to work like a pro – meticulously cleaning every one of the 40 pins on the Ilizarov. Needless to say, that was when my mom became my biggest advocate!
As odd as it sounds, I have fond memories of my medical days. Somehow, my family managed to make every trip downtown a fun experience. We always made a point to do something fun whenever we had a medical appointment, and we’ve been all over the city: The John Hancock Building, Lake Michigan, Lincoln Park Zoo. I think my parents saw this as quality time that we could spend together, even though we were in the midst of such scary health issues. One of my fondest hospital memories is of my mom and me in the hospital cafeteria. My dad and younger sister had just left for the evening, which was always a hard goodbye for my sister, and it was still early enough that my mom and I sat down in the cafeteria for an ice cream sandwich dessert. It was nothing fancy; in fact, it was quite simple. But in that moment, I knew I was loved and felt so close to my mom. It’s times likes these that I wonder if my family would be as close if I didn’t have a disability.
But away from waiting rooms and needles, I was a typical child. I loved visiting my grandparents in Alabama at Christmas and swimming all day during the summer. I spent countless hours hanging out with friends, and in my childlike mind, it should have been declared a national holiday when I learned how to save the Princess in Super Mario Brothers. I thank my parents for giving me this normalcy. At home, I wasn’t disabled. I was just Melissa. My mom planted the seed in me at a very young age that I could do anything I wanted and that I should never let my disability stop me or use it as an excuse. I think this is what made me reach for so many things in life.
In high school, I was a member of the National Honor Society, and in college, I was editor-in-chief of my school newspaper. I don’t know if I would have had the confidence to push myself if my parents hadn’t been there, cheering me on and always willing to give me a reality check if I ever got down on myself. When I started a four-year university, I remember feeling overwhelmed. My parents took me out for lunch on my first day and told me, “Have you ever seen all those blind students walking around campus? You have it much easier than that, so be thankful that you have the opportunity to get an education.” Their talk stuck and I went on to graduate magna cum laude from Northern Illinois University last May.
It was also my parents who pushed me to be as independent as possible – even when I didn’t want to be! I’d try to be coy and say “I’m a handicap, so…” And that’s about as far as I would ever get. My parents would stop me midsentence, and my father, with his stern voice, would say, “Don’t doubt yourself.” When he died 3 years ago, I made it my mission to become even more independent. In college, I was more independent than I’d ever been before. I went to classes and worked on my college newspaper. I experienced a new sense of freedom, and this freedom helped me grow as a person. Because I spent the majority of my childhood consumed with medical things, I always felt like I was behind my peers – they had done so much more than me, experienced so much more than me. In short, they just lived. But being more independent and self-sufficient has given me more life experiences, and I’m very thankful for that. My independence has also taught me that I can do a lot more than I thought I could. Granted, simple tasks such as cleaning and food preparation take me a bit longer than able-bodied people, but doing them myself gives me a new sense of power and strength.
Do I wish I had a disability? People always ask me if I’m ever angry or disappointed that I have a physical disability. My answer is always the same: No. Just like you can’t miss something you’ve never had, I can’t miss being able-bodied. I don’t know any life but the one I’ve been living for 24 years, so to me, the way I am is normal.
Besides, I’ve never been comfortable with the term normal. Maybe it’s the relativist in me screaming to come out, but if my disability has taught me anything, it’s that nothing can ever be truly normal. Living teaches you about life. But more importantly, my disability has taught me about life and about what it truly means to live. I always say that I think of my scars – and I have quite a collection – as a badge of honor. They’re a constant reminder of what I’ve been through. 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. It may take me longer to get where I’m going, but I know I’ll get there. Life is simply too short to do otherwise.