Expectations

I just read this AOL article about a boy who has no cerebellum.

Maybe you're thinking that this is an article about a tragedy, but it isn't.

Baffling doctors and defying neuroscience, Chase Britton is an active boy who met milestones he should not have been able to meet without a cerebellum. This article reminds me of my own neurological issues.

I was born with Dandy Walker syndrome, a cerebellum malformation and hydrocephalus, an accumulation of cerebrospinal fluid in the brain. It reminds me of how lucky I am to be healthy, to have always been able bodied, to never have been discouraged from doing something or told I couldn't do it.

It is painful, though, to think of the provisions I had as a child. They were isolating. I didn't understand them. I didn't feel like I had trouble with things, but looking back, I know that I did. All I have to do is watch a home video of me walking somewhere or dancing in my ballet class. I remember tiring easily.

There were also provisions I didn't feel I needed, but took anyway, either because I was not given another choice or because I was told I needed it: recess indoors if it was icy outside, the use of the alternate, less steep and lower trafficed stairwell.

There were also optional provisions like the use of the elevator in high school. I never used it. I still have the elevator key on my keyring. It reminds me of how much I could have limited myself if I had taken certain provisions. Stairs are often a bit of a job for me. Always have been. But I can walk up them pretty well, run up them sometimes, and so I do.

It was good that the adults knew I had issues, though, and addressed them. I was young. I didn't know I had issues. When I got older, I started noticing that I was different and opted out of some activities and provisions that made my issues more apparent, like Track and Field. And I avoided telling people about my issues too. I distinctly remember being at the brink of tears when I had to tell my grade 9 gym partner that I wasn't supposed to catch a football to my abdomen. I just couldn't tell her why: I have a tube inside my brain that goes down to my upper abdomen to drain the excess fluid from my brain. I couldn't risk injuring or dislodging it.

It had become hard for me to talk about for reasons I still don't understand. I think it had a lot to do with my dislike for being treated like I was delicate or less capable, something I already had to deal with. I was terrible in gym class, largely because of my asthma.

I was fine with telling others I had asthma or that I had to take a break or sit something out. I used my puffer before and after class in front of everyone. I was such a slow/easily exhausted runner that one of my classmates asked me if there was something wrong with my heart. A few years later I did find out that there was, just a mild heart rhythm disorder, but something I needed and still need medication for. Who knows the degree to which each condition affected my abilities.

I could have tried to get out of gym class or opted out of a lot of activities, but I didn't and it was good for me. I'm so glad no one told me I couldn't do it or told me not to do it.

I'm glad that Chase also has this support, but I worry that people will enforce limitations on him or discourage him from aiming for certain heights. This seems more likely for him as his various conditions are much more serious than mine were/are. I hope that his provisions are well suited to him and that he understands them. I hope others understand them too. And him.