the impossibility of a cure

My sister’s birthday is today. I wanted to hang out with her, but we couldn’t quite make it work this year. I’ll see her next week, but I feel bad that I can’t be with her on the actual day. I’ve been looking over everything I’ve written about her in the past year. One thing in particular kinda bothers me. It’s the idea that I spent so much of my childhood praying for a cure. It’s not the prayer that bothers me (even though I’m now an atheist). It’s the possibility of a cure that bothers me. Sometimes I feel like it’s offensive to even ask for one. This feeling comes directly from my gut. It’s difficult for me to explain, but I do have justification for it, so I’ll try.

Diversity and adaptation are key to evolution. In fact, without genetic mutation there is no evolution. The strange thing is that we, humans, appear to strive for an ideal, ever-lasting body. Unfortunately, that’s not how evolution works. Cri du chat, or 5p-minus, syndrome affects my sister’s genetic make-up. Yes, you’ve guessed it, my sister has a genetic mutation so she is indeed an X-woman. She should be awarded at least some kind of compensation for the rights to that incredible franchise.

We call this a “mutation” with the assumption that we know how an ideal human body is supposed to function. What if there is no ideal human body? There might not even be a set of ideal traits. We know what goes into the makeup of our genome. We think we’ve got all the different possibilities figured out. On the other hand, if genetic mutation is a requirement for evolution, then there will never be a manual for determining exactly how our genes should function. In other words, if we found a cure for all of our genetic mutations, we would cease to evolve. That doesn’t sound very adaptable. It sounds to me like the survival of the human race depends on genetic mutation. There is no ideal human. I think we all know that. 

I would have a tough time explaining this to my confused, Christian/Pagan, 9-year-old self. The thing she wanted most was a sister she could talk to. We’d tried teaching Mich sign language, but she’s never really had the fine motor control required. To tell you the truth, I wasn’t great at ASL either and I have all the fine motor control I need. So, what’s my flipping excuse?

Up until I got to age 9, I hadn’t really given science much thought. I knew that it existed. I knew that one day, I would be learning more about it. I don’t feel that I started practising science until I was at least 10 years old. The more I learned, the more impossible a cure seemed. After a certain age, I started to feel guilty about wishing for a cure. If Mich’s syndrome affected her DNA, then I’d be wishing to change the very fibre of her being. Everything I loved about Mich would be “fixed”: the way she listens to music, her sense of humour, her ferocious personality. Even though we struggle with managing a lot of the health conditions that accompany her syndrome, I still can’t bring myself to wish for a cure.

Mich and Mom by the lake, summer of 2019