eSCAping Type 1

There’s been a question on my mind for the past few weeks that I’d like to draw some attention to: Does having Ataxia mean I’m “sick”?

Growing up, my dad (who had SCA1) never talked about Ataxia, and instead would just tell me he was sick. He couldn’t go to certain places or do certain things because he was sick. He needed a wheelchair because he was sick. His voice was hard to understand because he was sick. I suppose he found that easier than explaining a neurological disease to a teenager.

But, honestly, it used to confuse and annoy every ounce of me whenever he said that. Everyone gets sick. Not everyone gets Ataxia. It’s not the same.

Why didn’t other dads react like that to being sick? Doesn’t being sick imply eventually getting better? If I got sick would I need a wheelchair? But if my dad wasn’t sick, what was wrong?

Then, when my husband and I decided to try getting pregnant, I had to reassure quite a few people (doctors included) that I’m not sick – I’m actually very healthy, besides the whole Ataxia thing. My body might not be able to walk on its own, but that doesn’t mean it can’t create life. Our baby wouldn’t be able to tell the difference between me and an Ataxia-free person from the inside.

And now that I have a son,  I’m very set on never telling him I’m “sick.” I do plan on explaining Ataxia to him right off the bat – I believe that him understanding what’s wrong with mommy is very important in creating a sense of “normalcy” – but I want him to know it’s different from, like, a cold. Plus, I don’t want him thinking he could get SCA – we did a whole lot to prevent that.

But I’ve referred to Ataxia as a chronic ILLNESS and DISEASE, so I guess my question is, where do we draw the line? Is someone with anxiety sick? How about diabetes? Cancer?

If it’s not wrong to call someone with Ataxia “sick,” why are some of us so against it?

[Side Note: If you’re looking for some accompanying background music, I’ve had Lil Wayne’s “A Milli” playing on repeat in my head while writing this – “…I’m ill, not sick…” – so click the picture below to listen…]

When it comes down to it, I guess it all depends on definitions. (Reason #832 why ELA is the most important class…)

Sick – adjective – affected by physical or mental illness.

Illness – noun – a disease or period of sickness affecting the body or mind.

Disease – noun – a disorder of structure or function in a human, animal, or plant, especially one that produces specific signs or symptoms or that affects a specific location and is not simply a direct result of physical injury.

The NAF defines Ataxia as “a rare neurological disease.”

Though I’ve seen a lot (two words) of Ataxians refer to it as a condition – “the circumstances affecting the way in which people live or work, especially with regard to their safety or well-being.” 

Definitely true. Every sense of that definition applies to Ataxia. But that also makes it seem like it’s not medical? I mean, part of my brain is deteriorating…

So then there’s “disorder.” More specifically, a “medical disorder.”

Disorder – noun – a disruption of normal physical or mental functions; a disease or abnormal condition.

Which validates “condition” anddddd brings us back to “disease.”  It’s quite literally all connected.

So, I don’t think there’s a right or wrong term. Like almost everything, it seems to come down to personal preference.

I guess, to me, a sickness is a foreign, temporary thing that enters your body with the possibility of leaving. It’s altering; it changes you from what you’re normally like/how you typically function. And since my SCA isn’t temporary and is part of my normal, everyday existence, I don’t consider myself as being “sick.”

But here’s to hoping that changes someday.