Life moves at a brisk pace, doesn't it? We're either coming or going or running to the next meeting, to the grocery store or to one of our many doctor appointments. We're so busy moving forward that we sometimes forget the most important part in this whole journey: Looking back.
In high school, my history teachers drilled it into my head that we "all need to learn from history, or we're doomed to repeat it." I tended to roll my eyes at the time as only teenagers can (my sincerest apologies to my US Government
teacher!), but now, that statement seems pretty on the mark. We can't know where we're going if we don't know where we've been. I sometimes feel like I know that
all too well.
So, in an effort to steer my feet firmly ahead, allow me to take a step back and review my life, such as it has been for the first 28 years or so. I hope you'll do the same.
Look for Parts II and III later this week; like I said, I had a lot of events, shall we call them, in the last 28 years. Think of the next three posts as my mini-memoir.
I was born with Freeman-Sheldon Syndrome (FSS), 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.
At birth, my knees were bent more than 90 degrees, and I had my first surgery when I was 10 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 affects people, but the majority of my surgeries have 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. I suppose to take my mind off things, I got into the habit of listening to a CD of the Beatles greatest hits during our daily cleaning ritual. To this day, the Beatles' "Hey Jude" still conjures up those sweet smells of rubbing alcohol and sterile gauze pads. 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. It's also times like these that I miss my father, but more on that later...
