eSCAping Type 1

The most obvious sign of my disease is, of course, the thing everyone sees wherever I go – my walker.

Using a mobility aid is, well, embarrassing.

It’s basically this thing shouting, “Hey! I can’t walk well! So stare at me while I try! And then try to figure out what’s wrong with me!”

But since Ataxia and mobility go hand-in-hand (the English teacher in me desperately wanted to make a pun out of that) using an aid at some point in your life is pretty inevitable.

When I was first started losing my stability, I relied heavily (literally) on other people.

I told acquaintances I had a disease similar to Parkinson’s (that’s the quickest explanation I’ve got) so that they could help me walk. I knew I’d fall without an arm to grab on to, and I didn’t know anyone else my age with that problem, so that was my solution. I figured I’m young and skinny and pretty, so people wouldn’t mind.

Plus it let me still kind of hide my Ataxia.

But when I was officially diagnosed with SCA, my neurologist suggested I buy a cane.

She acknowledged the stigma that came with using one – yes, people would stare when they saw me, but that was actually a good thing!

Wouldn’t it be nice for people to not assume I’m drunk all the time? Wouldn’t it be helpful if strangers automatically gave me space and time while walking in public? Wouldn’t I love not having to ask for help and explain my disease repeatedly throughout every day?

I’m not going to lie, I did not jump aboard her thoughts right away.

My initial reaction – despite the fact that this NEUROLOGIST  literally specializes in movement disorders – was that she had no idea what she was talking about.

I wasn’t about to take advice from someone who didn’t use a mobility aid at age 26.

But, right before going on a wine tour where being denied service because I already walked drunk simply wasn’t an option, I bought Gladis – my purple HurryCane. She folds up nicely for easy purse storage (I carry a big purse), has a three-prong base, and a T-grip padded handle.

I’ll admit, the cane did very little for me, stability-wise; that stick has as much balance as the person holding it. 

But my doctor was right! Yes, people stared, but the social benefits outweighed that so much.

I was served wine to my heart’s content with no questions asked no matter what my walking looked like, and really, what could be better than that?

I used her for about two years, until my Ataxia progressed as it so awesomely does and I was relying on Gladis AND a person to help me anytime I stood.

Luckily this was right around the time I uncovered the benefits of Instagram! I know that seems completely random and unrelated, so hear me out…

Through some hashtag searching, I discovered girls my age who also have Ataxia!

Keep in mind, it’s a very rare disease, to the point where I still only know about three people with SCA1.  Most of my Instagram friends have Friedreich’s Ataxia – similar, but slightly different, but close enough!

And none of them used canes… they all had walkers or wheelchairs!

Not only did seeing that help steer me in the right direction (ha), but it also gave me the confidence to accept my necessity and purchase a much-more-obvious mobility aid.

These were real people with real experiences I could actually relate to, and they unknowingly helped me so much – I really hope this blog does that for someone, too.

Which brings us to Nova – my petite pink rollator.  After seeing girls my age using mobility aids like it was completely normal, I knew I could do that, too.

I’m not kidding when I say buying this changed my life. For the first time in years I didn’t have to rely on other people every time I moved. I could carry an infinite number of things in Nova’s seat, hooked on the handles, secured in the pouch, all while not having a single concern about losing my balance, no matter where I went.

I was independent AF.

She easily folds to fit in my car, and has a great seat for when I get tired. My brother bought me a cup holder that easily attaches and folds, and they sell seat covers if I’m ever feeling crazy for a new design.

I highly recommend NOVA Rollator Walkers, and not just because I get a small profit at no cost to you if you use the links here to buy stuff. Really though – if you’re going to be seen with something 24/7, it better be a good representation of yourself. And with Nova, there are so many options to personalize your aid.

I wish I would have gotten a walker years ago, even before I thought I “needed” one.

Being safe and confident is worth every second of staring I get.

And I do get a lot of it. Anything out of the ordinary is naturally bound to get some looks. You have to embrace that. But when it lasts longer than a few seconds, I usually smile at them, just so they know I’m staring right back – I’m talking to you, middle-aged folks…

I know I’m going to need a wheelchair eventually. Probably sooner rather than later. And really right now I’m not completely dreading it because that means I’ll get to wear heels again.

I really would love any suggestions or recommendations you may have!

But until I save up the money for a good one (yeah, we won’t get into how helpful insurance is) Nova’s doing just fine for right now.

So, here’s my advice, whether you have a disability or not: Do what you need to do and screw what other people think. The only thoughts that truly matter are your own.

I know that’s so much easier said than done. But if you don’t like something you can’t control, change your mindset!

YOU are the only one in direct control over YOUR MIND. And that might be the only thing you can change. So, if you can’t change anything else, change that!

I know that was redundant. I swear I’m not trying to sell you some weight loss shake or wrinkle vanishing cream. I’m just trying to teach and inspire you!

Andddd maybe get you to donate, because I sure would love to walk without a mobility aid someday.