Common Misconceptions About My Ataxia

misconception ataxia2

Let’s be real: 99% of people don’t know what ataxia is in the first place. In fact, my first and most common misconception could be “No, actually, I don’t have multiple sclerosis, thanks for asking…” I wrote an article recently explaining what ataxia is, and here I’ll tell you about the most common things people ask me, think about me, or assume about me and act on without talking to me about it.

Once again, this is about my (unknown) version of the disease and my experience with it, so it’s likely the same won’t apply to everyone with ataxia. Let me know if it does, though, so we can commiserate together about how weird ableds can be!

It Doesn’t Affect Just My Legs

Of course, my legs are the most obvious part of my disability, what with the walker. But people always seem surprised when I explain to them that a neuromuscular disease affects all my muscles, not just my lower-body ones. Arms, hands, fingers, throat, all muscles, all affected. Not all of them are at the same level, luckily. My arms and hands are still quite steady, and I can carry a mug of hot coffee without dropping it all over myself, as long as I don’t walk (so getting my coffee from the machine to my desk in the morning is like a relay race of picking up the mug, stretching as far as I can go without toppling, putting it down, moving a few steps, picking up the mug again…)

My ataxic fingers tend to go slower, and if I try to make them go fast, they get all tangled up and I end up with more typos than correct letters if I’m on the computer. So apart from walking, typing is the part that is slightly problematic—and might become more so since my livelihood depends on it. As I mentioned in my first article, I used to play piano, and now realize that my inability to play quickly was an early sign of ataxia. This is now transferred to typing on a keyboard, where as much as I try, I just can’t type as fast as others.

That said, It Does Not Affect My Brain

(You know, apart from the fact that it’s literally a part of my brain malfunctioning that causes all this…)

If I type slower, it doesn’t mean that I think any slower. In fact, I often have sentences fully formed in my head before I’ve even finished typing the second word, and have to repeat them over and over as I type to make sure I don’t forget them. If I speak slower, it’s not that I’m looking for my words, it’s probably because I’m searching for the simplest way to say what I need to say without stumbling on my words or getting my tongue in a knot and ending up sounding drunk.

In fact, I’ve often heard it said that disabled employees are useful in work environments because we tend to be more observant and think outside the box. In my case, every time I step into a new place, I make a quick recon, spot the nearest toilet, the simplest way to get where I need to go and escape from it once I’m there. I often have to quickly solve problems abled people accompanying me don’t even think of; chairs in my way, bags on the floor, people about to stand up in front of me, or hallways too narrow for my walker to fit through.

I’ve usually looked around and spotted an alternate path before they’ve noticed what caused me to stop in the first place. You’d think this ability to think on our feet would attract employers to disabled employees, but no, they just see the fact that we can’t type as fast rather than the fact that we’ll probably think of ways to remedy that on our own.

I’m Not in Pain

I wish people would stop telling me to sit down all the time. Because when I sit down I have to get up. And unless I have a good reason for it I’d rather not. And I know my ankles and knees appear twisted and it looks painful to stand and walk on them. But believe me when I say, it really doesn’t.

Another thing that doesn’t hurt at all is falling. I don’t know if I have just become more solid over the years, but it really takes a lot to make me hurt. I fall over a lot, sometimes hard in ways that make people rush to me in a panic thinking I’ve just broken all the bones in my body, and I just get back up and walk away calmly after convincing them that I’m really fine.

Often, I even notice huge bruises on my body. And have no recollection whatsoever of when and where they come from. In fact, the only time I seriously injured myself because of ataxia was in 2014. When I fell on my face in a ceramic bathroom and broke my two front teeth. And in 2016, when I fell on my face again. I got one of the repaired (ceramic) teeth stuck in my lip, and broke it (yes, in that order). And I guess you could count on ataxia-related incidents the time in 2004 when I fell off a horse and dislocated my elbow.

So here’s a general rule for you. If I’m not bleeding and all my bones are still where they’re supposed to be, there’s a 99% chance I’m completely fine.

I’m Not Drunk

This is one I don’t get as often now that I use a walker. But I used to get it a lot. But, and my parents will be glad to know this, I’ve never actually been drunk. I haven’t had a drop of alcohol since 2008, even. But when I’m walking to the washroom during a work Christmas party, one hand on the wall, and a colleague assumes I’ve drunk too much, or when I’m standing at a curb waiting to cross and suddenly lose my balance and need to grab a pole to avoid falling. And a random passerby asks me how much I’ve had to drink, this isn’t something I can explain. Primarily because it’s none of their business.

What with my non-existent balance and my sometimes slurred-sounding speech, my disease can present as something it’s not. So don’t just assume anything about me. Or about anybody (disabled or not), for that matter. Based on what you, an abled person, would be or feel in the same situation. Ask. Always ask.

We would like to thank Elise for sharing her story with us. As always, we welcome your thoughts and value your feedback. Let us know what you think by Dropping Us a Line or commenting below.

If you would like to get involved and share your experience with Ataxia, please contact us. Join Our Community today. A place where we empower you to build a healthy lifestyle and raise overdue Ataxia Awareness. Experience transformative storytelling and share your story to inspire positive change.

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