In January 2014 I had an MRI scan of my brain revealing that I have an deformed Cerebellum. Incase you’re wondering, the Cerebellum is quite a small but significant section of your brain, located towards the back of the head- where your neck meets the skull, and basically acts as the coordination centre for you whole body. So, no cerebellum, no coordination.
In short, my cerebellum has been shrinking, slowly but steadily for the last 14 years or so- it’s referred to as Spino Cerebellar Ataxia. It means most aspects of life (emotionally, intellectually and physically) are compromised. In the words of my neurologist, I can no longer compare myself to other “normal” people, as my situation means I cannot drive a car, travel on my own (in unpredictable terrain), ride a bike… run or jump… looks like my dream of becoming an Olympic Track and Field champion will come to nothing. Even walking by myself (particularly at night when I am fatigued from the day) is becoming an issue. The list of can’t’s goes on.
When I was first diagnosed, we (my parents, doctors and I) didn’t quite know what Cerebellar Ataxia was, and what it would mean for me going forward. Since no-one particularly “high profile” has it, no research has gone into it- and finding a cure. It’s crazy to think that I’ve been living with this (in certain degrees of severity) since I was 12. It means that all those years I was hard on myself for being slow or not understanding things in school, wasn’t because I was stupid (I’m not, no matter what you say, schoolyard bullies…) but it was actually due to a neurological deformation.
In light of all this, I thought it’d be helpful/useful for me to have a bit of a running record of my life post-diagnosis. Since I’m not currently studying or working (I am unable to at the moment since it affects my ability to retain information, amongst other things, and my fatigue is so bad I can’t focus on one thing for longer than say, an hour) I have a wealth of time on my hands and what better way to use it than to write a blog (blog because as part of this condition, I have trouble with fine hand-eye coordination, so hand-writing’s out for me right now). Having said that, I fear this might be the only thing I write for a while… hence the title Sporadic (also because what I’ve got is Sporadic Adult-Onset Cerebellar Ataxia, so it’s a bit of a play-on-words, if you will… at least I amuse myself).
So, please enjoy (or don’t, whatever) my forthcoming and extremely entertaining posts about the secret-life-of-me. Am I an undercover spy in my spare time? You’ll soon find out… well, you probably won’t because I wouldn’t publish it on the internet… But, without further adieu, my Sporadic Goings-on…