Doing Justice While Making Peace With the Past
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 deal with the stiffness, pain, and tiredness when they come.
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 I could not join in. So I compensated—some say I overcompensated—by doing my best in the classroom. Soon I found an area in which I could not only keep up, but also excel. 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 it.
Keeping silent made it easier for others to pretend they didn’t notice my limp or that I couldn’t keep up. I could just pretend I had trouble because I was “out of shape,” 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 adults. I didn’t want to lie. I just wanted to avoid the looks of sympathy and the empty questions of people pretending that they really understood what my life was like.
I’m beginning to learn some things about myself as I get older and get to know more people who have the same conditions as I do. I’m learning that it’s not easy to be different from the norm, but I don’t have to pretend with people either. To be honest with the people in my life, I have to admit that I’m not just out of shape. There are certain things that I have never been able to do and others that I may never be able to do again (or at least not in the same way).
Spoiler alert: There's more next week, and I almost get my life figured out. All I had to do is learn to live without the lies.