I remember what it felt like when I was small. I knew that I was different from the other kids. I knew I couldn’t do everything they did, and I had to go to the hospital occasionally.
I understood that I had spina bifida and hydrocephalus, but I couldn’t really explain to you what those were. I kind of knew that I had an opening in my back when I was born, and the doctors had to close it. I knew that hydrocephalus wasn’t actually WATER on the brain, but some kind of fluid. In fact, at the age of 48, I still get pissed off when I hear somebody call it that.
I didn’t really have this sense of myself as disabled from an early age, although unlike a lot of people in the disability world, I actually looked forward to the Jerry Lewis telethon on Labor Day every year. Even though they were living with muscular dystrophy, not spina bifida, I felt some kind of connection–some kind of kinship–with the children I saw on the show. I always wanted to pledge a little money for the work, because I figured they were in worse shape than I was.
Oddly enough, I knew a few other kids in our rural area who had the same condition as I did. They were more affected than I was. I felt somewhat blessed that I didn’t use a wheelchair or have a hugely noticeable limp. I just got used to walking the way I did and never really worried about how others saw me. I was never a part of a community where there were others with spina bifida until I was in my 30’s living in Canada. Most of the people I knew then looked down on me, or at least it felt that way, because I was walking with the assistance of nothing but a cane. I still didn’t feel disabled, but instead of this being a good thing, I felt like I was being negatively singled out. I felt left out, so I limped along trying to maintain stability and pretend that I wasn’t having more and more trouble walking and losing control of parts of my body that I had never completely mastered in the first place.
It was from the spina bifida association I was part of in Canada that I first learned of the possibility of having a tethered spinal cord. Somehow or other the scar tissue from the surgery to close the spine when an infant is born limits the movement of the spinal cord within the spinal canal. I knew one person who had had surgery to correct her tethered cord and lost her ability to walk, so I had decided that I wouldn’t agree to the possibility of having that surgery, no matter what.
However, the surgeons at the spina bifida clinic never suggested that. They never did the imaging to show whether I had tethered cord or not. They focused on treating some of the individual symptoms, such as urinary incontinence. It was this focus which led to an unexpected diagnosis in 2011 when I was 44 years old.
Stay tuned for tomorrow….
I found this painting from Frida Kahlo called The Broken Column. She had spina bifida, even though she preferred to attribute her problems to external factors. Her work depicts her feelings about her body and what it could and couldn’t do.