The Lucky Side of Things

As part of the Ataxia Aware project, we are sharing personal accounts of those with Ataxia or other rare conditions. We want to provide a safe space for people to talk about their experience with disability, whether themselves or someone close to them.

My name is Elise, I am 31 years old and was diagnosed with spastic ataxia in 2011, at age 23. I didn’t know it then, but now, after eight years as part of the disability community online, I realise just how lucky I was to get that diagnosis. I hear all kinds of horror stories about how expensive it is, how they have to see dozens of doctors over decades to be told over and over that there’s nothing wrong with them and it’s all in their head. My diagnosis story lasted in total a year, maybe two; it was all free because I’m in Canada; I only saw a total of four doctors, each one sending me to a more specific specialist; and I only got one misdiagnosis before the final one (and even then, it was in the ballpark, just a couple bases off).

As you can imagine, it’s quite shocking to learn at 23, barely out of university and starting life as an adult, that you have a neuromuscular disease that not only has no cure and will never get better on its own but is also degenerative and genetic so you have no chance of reproducing without passing on the chance to perpetuate it in your descendants. Once again though, I was lucky (relatively) in that the same week I got my diagnosis, in March 2011, I had VIP tickets to see my favourite band, Apocalyptica, so I didn’t have much time to feel sorry for myself.

Today, at age 31, I am a full-time rollator user (have been since 2016) and an occasional wheelchair user, mostly when I travel. I take muscle relaxants three times a day and get botox injections in my calves a few times a year. After MRIs, blood samples and DNA screenings, we still don’t know exactly what type of ataxia I have, except that it’s recessive, evolves slowly and comes with a hearty side of spasticity. A medical life that most of my abled acquaintances stare at in horror and ask me how I do it. It didn’t happen overnight, but I’m pretty much fine with it now. Falling down and knocking into stuff have increased my tolerance to pain; having to hold onto walls and grab bars crawling with probably every microbe known to man has strengthened my immune system. I’m rarely in pain and almost never sick, so I count myself lucky. I know lots of people, particularly disabled people, have it worse than me. (By the way, I can say that to myself, but I do not appreciate ableds saying it to me.)

But the best thing I have discovered since all of this happened is that there is an entire community of disabled people out there. In the age of social media, links and relationships can be built around the world. You learn that you are not alone living through what you’re living through, there’s always someone somewhere to support you and commiserate with you.

Or if anything there’s the #AbledsAreWeird hashtag on Twitter, always good for a laugh!

We would like to thank Elise for sharing this inspirational story with us. If you’d like to know more about her, be sure to follow her on twitter (@elisability) or on her blog (https://elisability.wordpress.com/).

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