my sister, mich

In July of this year, I’ll be performing a one-woman show for the Hamilton Fringe Festival. This show will be about the relationship I have with my sister, Michele, who happens to have a syndrome known as “cri du chat”.

When you Google “cri du chat syndrome”, once you get past all of the jargon about chromosome deletion (spoiler alert: she’s missing the tip of number 5!), you’ll find that this name comes from the sound affected children make. As I was growing up and learning about having a sister, I thought that all sisters made this sound. I thought that I was supposed to make the same sound. Due to the unique condition of my sister’s nervous system and larynx, I’ve never been able to match the sound she makes. This doesn’t stop me from trying to communicate with her.

In the play that I’ve written, I don’t focus on Michele’s medical condition. I’ll be honest, I don’t really think about it much anymore. I spent a fair amount of my childhood praying for some kind of cure that never materialized. Obviously, we’ve made a lot of progress in the study of genetics. Mich was born in 1970, seven years before me and seven years after the cri-du-chat syndrome was first identified. Eventually, I gave up on finding a way to reproduce the things that Mich was missing. I settled on appreciating everything about Mich that makes her an incredibly unique person. In fact, she’s the most fascinating person I’ve ever known.

Because the play is only 20 minutes, there’s a lot that I’m not able to describe about my relationship with Mich. I’m writing this series of articles in an effort to better explain the affect that my sister has had on my life and personality. She’s a fundamental part of who I am, and that will never change.