When a stranger first sees me, I don’t look very extraordinary. But as soon as that stranger sees me take my first step, his or her perception probably changes quickly. I was born with spina bifida. That means that my spine didn’t close properly while I was in my mother’s womb, and I was born with an opening that needed to be surgically closed. A common companion to spina bifida is hydrocephalus, or what was once called colloquially a “water-head.” I was also born with this condition. If you’ve never known anyone with those struggles, maybe reading a little of my story will help you understand what these foreign words actually mean in someone’s life.
One thing that will surprise some people, but no one who knows me well, is that I don’t use a wheelchair full-time. Due to the level of the spinal “injury,” I have enough mobility that I do just fine unless I’m tired, or I’m walking long distances, or dealing with stairs. I can tell that the passing years make a difference in my mobility, but I don’t want to lose the ability to keep moving. So I keep walking, and I deal with the stiffness and pain when they come, only resorting to mobility aids when necessary. I still have enough movement that I don’t use the aids enough to get comfortable with them. So they slow me down!
When I was a child, I wasn’t able to keep up with my peers. I spent recess watching the other children run and play, knowing that I could not join in the fun. So I compensated—some say overcompensated—by doing my best in the classroom. Soon I found an area in which I could not only keep up, but also do very well in. Throughout my school years, no one noticed my lack of physical ability as much because I had compensated for that lack with a different kind of ability. So as I grew older and met people who had not gone through the early years of school with me, I found that it was easier not to tell people about this part of me.
Keeping silent made it easier for others to pretend that they didn’t notice my limp or that I couldn’t keep up with them in daily activities. I could just pretend that I had trouble because I was “out of shape” or any of the various excuses I dreamed up for lagging behind. As an adult, I found that the only time I couldn’t resort to evading the truth was when I was working with children. Their direct questions and refusal to take a “white lie” forced me to be more honest than I was with most adults. I didn’t want to lie to those around me—it was that I wanted to avoid the looks of sympathy and the empty questions of people pretending that they really understood what my life was like.