eSCAping Type 1

Some people refer to Ataxia as an invisible illness – a disease with no prominent physical characteristics. It’s an umbrella term for “any medical condition that isn’t easily visible to others.” There are hundreds of these invisible diseases like Lupus, Fibromyalgia, Cystic Fibrosis, mental illnesses…

And, to be honest, I’ve always been hesitant to put SCA in this category. How a person walks seems like a pretty prominent physical characteristic to me.

But, more than once, strangers assumed I was drunk before assuming I had a disability. Plus, there’s so much more going on that is, well, invisible. So, I get it.

Of course invisible illnesses are a double-edged sword:

On one hand, being able to hide your disability from the public eye is a great superpower. You get to live a somewhat “normal” life, without everyone knowing your personal issues without your acknowledgment.

At the same time, wouldn’t it be nice to not have to constantly explain your symptoms? Or have people expect you to act normal since you look normal? Or being accused of exaggerating or making it up?

As with anything in life, there’s much more to my disease than meets the eye. But I’ve found that people can’t understand what they don’t know. And our society has a super difficult time believing what they can’t see.

Remember, every person with Ataxia experiences life differently. What I write here should in no way be read as a blanket statement for this disease.

I just want to give you a glimpse of what my life is really like, so you remember that every single person is struggling with something that you can’t see, just in different ways.

Ataxia severely limits my spontaneity; I cannot do A. Single. Thing. without fully thinking it through, first. (Except, you know, road tripping across the country.)

For example, say you’re watching a movie at night and you want a snack – a quick trip to the kitchen and done! You might not even pause the movie.

You didn’t give it a second thought. 

OK, here’s my scene (from 2018): first I grab my walker (which has to be out of eyesight for movie viewing purposes, but still within sitting arm’s reach) and use it to push myself off of my couch to find my standing balance, which usually takes a couple of tries. Then I journey to the pantry to get some beloved Oreos (we’ll forgo the Peanut Butter since that would require a knife from a separate drawer location, which would take another two minutes, plus if I’m home alone I probably can’t grip the cap to open the jar anyway). But I’m definitely going to need some milk, which I have to first get out of the fridge and hope it’s empty enough so I can lift it because sometimes my arm muscles find a half-gallon of milk heavy. I put it on my walker to bring to the counter which is super close but I can’t walk and carry something at the same time because I’ll fall so I need both hands on the walker. Then I put a Tervis cup in the sink and pour my milk in it because I’ve learned that on the good chance that I spill, cleaning is already done if it’s in the sink. Then I balance everything just right on the seat of my walker to begin my quest back, stopping at the fridge for about a minute to put the milk away with one hand. And I’m almost done! Except our living room has a carpet, which means there’s a slight bump that I have to navigate very slowly with enough pressure on the handles of my rollator to get the weight off the front wheels without spilling my milk… And then, after about 12 minutes, I can play the movie & enjoy my snack!

I got bored typing that. Did you get bored reading it?

Now imagine having to do that every time for everything. Need a tissue at work? Have to pee at a restaurant? Did the grocery store rearrange some aisles?

Everything I do requires full effort from every single part of my body – especially my mind. I can do almost anything, it just takes me a long time to do it.

Let me give you another example from a more recent post titled “Disabilities are not Laziness” :

We have a candle sitting on our kitchen island. But we just got a new shelf in our bathroom and it would look really cute in there. So, the other day, I got the candle (meaning I had to first position myself correctly and then slide it across the surface because it was at too awkward of an angle to pick up), found the lid (but couldn’t get it on after a billion attempts because my fine motor skills are shit), balanced both objects on my lap and carefully (aka very slowly) rolled to the bathroom, where I set the candle in the sink basin (to avoid accidentally knocking it over and breaking it), stood up (after 8 failed attempts, which drained every ounce of my energy), mustered all my remaining strength to hoist that candle up onto the shelf (while also somehow not falling, while also only using one hand since I had to hold onto the counter for balance). And then I had to sit and close my eyes because all of that was a huge amount of multitasking that my brain and body simply can’t handle anymore.

Then, when my husband got home from work and went to the bathroom, he brought that candle right back out to its spot in the kitchen without a second thought. He was helping me put it where it’s supposed to go. 

So, when later he asked me, “What’d you do today?” the poor guy almost got that candle thrown right in his face.

I’ve mentioned that most people only see Ataxia as a mobility issue, but balance actually isn’t the most frustrating part of my disease.

Most of my symptoms can’t be easily helped, but walking can. I can use a cane, or a walker, or a wheelchair, and still get around. I never liked running anyway.

Writing is a different story. I loved the physical act of writing, so it was tough to give that up when I started losing fine motor function. And I tried really hard not to. I bought weighted pens, went to OT…

At least I still had typing. Most people don’t handwrite anymore anyway. But I used to be able to type 60 words per minute (thanks AIM) & now I’m at about 20. There’s a lot of backspacing going on.

Same with texting. By the time I respond to a group chat, the conversation has long since shifted. My Notes are full of long messages that I type out ahead of time, and then copy & paste when necessary.

But you probably wouldn’t know that just by looking at me. I seem rude when I don’t text back.

But all of that is worth it if I don’t have to speak.

Right now, talking is the most aggravating part of my life. “Right now” being the key words, because SCA is progressive, so this could all change in a week.

I could enunciate clearly in June 2019 – I did every day when I taught. But just a couple of months later, I can’t even call to order a pizza without having to repeat myself 100x.

It’s getting harder for people to understand me; my tongue and throat muscles just don’t work how they used to.

I’m not at all saying this so you feel bad for me. My life really isn’t terrible, just difficult.

As cliche as it sounds, I’m saying it so you remember not to judge a book by its cover.

Just because you see my wheelchair doesn’t mean mobility is my biggest issue. Just because a person looks normal doesn’t mean they aren’t struggling with something huge.

Invisible illnesses affect so many people you know. You just might not know that about them. So be nice, people.

 * Invisible Illness Awareness Week is October 16-22, 2022 *