Five for Five: The Riddle That Is Me

Yo!

4. Joubert syndrome has made me want to learn about myself

Since being diagnosed with Joubert syndrome, I've found that I'm very interested in learning about myself. What makes me tick, and why?

One of the interesting things about being diagnosed with JS as an adult is that I can go back through my life, health, and development and look at things with a new perspective. Certain health issues and surgeries stand out more, and various quirks and personality traits that neither my parents or I would've given much thought to before, like headstands, get seen in a whole new light.

It becomes even more interesting when I see or hear of another person with JS exhibiting similar traits. I know everyone with the syndrome is unique so I try and take things with a grain of salt but still, sometimes it's fun to compare and ask questions.

The neurology and psychology of the syndrome seem to fascinate me the most.

Joubert syndrome effects the cerebellum, which influences functions like speech, coordination, learning ability, and possibly even dreaming. I'm always amazed by how such a relatively small part of a part of my body can control so much, and how much screws up (sorry, I can't think of a better word for it) because something happened to it. I'm also amazed by the fact that the cerebellum is affected in everyone with JS (so, the exact same part of the brain), yet everyone with the syndrome is so vastly different and unique!

So, I guess the takeaway here is that, with all the difficulty, frustration, sadness, and general suckiness (this, like blogiversary, is a word too!) that can come with it, a rare disorder can actually be kind of awesome sometimes, from a certain point of view.

Cheers!