On My Ataxia

This is something I’ve been trying to find the words to say for the past 6 to 7 years.

When I was thirteen I was diagnosed with Friedreich Ataxia, as a lot of you probably know by now. I’ve never really opened up about it. There’s a part in The Fault in Our Stars that describes exactly how I felt about that moment in my life… “I didn’t tell him that the diagnosis came three months after I got my first period. Like: Congratulations! You’re a woman. Now die.” It was weird, I was only starting out in my life: I hadn’t even discovered who I was, and then I was afraid that I wouldn’t get to.

I’ll let you google it, but I’ll warn you to take everything you read with a grain of salt. Even after all of this time, when I read it, I don’t see myself in it, and I hope that you don’t either. The reason I won’t delve into it here and now is because I refuse to talk about my illness in lurid, self-pitying details. I am under no illusion; I know what’s happening to me and what will happen down the road, and it’s impossible to be a crazily optimistic person with belief in nothing but good and love and hope.

I know how weird it sounds to say this, and I am ready for a few raised eyebrows, but I have to say that I am thankful – grateful, even – that my illness turned out how it did. Obviously, I would prefer if all of this had never happened to me, but seeing as it has, I’ll face reality and admit that I am thankful for two things: the first being that the age of onset was just after my childhood. I will forever value the fact that I had a childhood that wasn’t tainted by the knowledge of illness and hospital visits. Secondly, I am thankful that my illness, compared with the FA of other patients, is so slowly progressing. It’s been nearly 7 years since my diagnosis, and I face virtually no limitations in my daily life.

Still discovering who I am, I cannot deny that this condition has lead me down certain paths – both good and bad – that have defined who I am and working towards being. I wouldn’t be who I am without it, and maybe that’s a good thing. Experiences character.

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