eSCAping Type 1

I recently uncovered the idea that Adele wrote her 2015 song “Hello” not to an ex-boyfriend, but to her younger self. While I can’t confirm that that’s true, it sure hits differently listening to it from that perspective.

So I did that. Repeatedly. (Click the picture below to do the same.)

And then I was inspired to write this post, ending 2021 by going back five or ten years to offer some Ataxia-specific advice to a newly-diagnosed 25ish-year-old Meg.

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1. Have a baby!

You’re going to love being a mom so much! It’s really completely worth every ounce of the time/money/work it takes to have a healthy, successful pregnancy (and, yes, it’ll take a lot of all three).

It’s ok that you won’t be able to do a lot of stuff “normal” moms can do – that goes both ways; there are things you get to do as a stay-at-home-mom-with-a-pretty-fun-wheelchair that they can’t. 

I’m certainly not saying it’s easy, but it is definitely a rewarding, stimulating daily challenge. Being a parent pushes you to constantly improve yourself in ways I’m not sure you would otherwise.

Stop debating, stop asking others, stop being unsure of yourself, stop blaming your disease, and go for it! I swear, almost everything will be better because of it.

 

2. Use a mobility aid.

Go get a rollator. Now. It’s going to give you SO MUCH more confidence. You not using one is in no way helping you “maintain independence” or any other bullshit you read online.

Stop focusing on the idea that “if you stop walking now you’ll never walk again!” It’s ok. There are far more important things in life – your safety being one of them.

 

Similarly, there are countless adaptive tools out there that can make your life easier if you would just use them. I know you see something like a shower chair and automatically think, “But those are for disabled people…” Yup. And what are you?

Weirdly enough, these things will actually give you MORE independence. Life can be done differently. Again, it’s ok.

 

3. Recognize (& fight!) internal ableism

Remember, it’s not your fault you need help doing certain things. It’s not because you’re lazy, or needy, or not trying hard enough… it’s quite literally because part of your brain is dying. And there are very few people who understand that, so you need to be one of them.

Let go of the idea that being disabled is shameful or embarrassing, despite what society may lead you to believe. This disease is very much out of your control, but your mindset isn’t.

 

4. Find RELATABLE support groups.

First and foremost, it really helps knowing you’re not alone. And Facebook groups with Ataxia forums are going to show you that.

But, keep in mind, just because you share a disease does not mean you share an experience.

Sometimes these posts will scare, annoy, confuse, intimidate, and overwhelm you BECAUSE there are a hundred different daily posts & responses about the hundred different types of this disease that affect a hundred different types of people in a hundred different ways.

(Plus, the internet can be a downright mean place filled with very opinionated people.)

 

But it is 100% worth it to find someone you can connect with!!!

Whether it be through Instagram (#disabledandcute #babewithamobilityaid #spooniesisterhood), a Facebook support group that you founded (Parenting with Ataxia), or maybe a blog you someday create… the internet can be a really good place, too.

 

5. It’s normal for your “relationship” with Ataxia to fluctuate.

Some days/weeks/months you’re going to be all about this disease – raising research money, attending conferences, posting on support groups, chatting with friends, discovering life hacks… And some days you’ll wake up remembering just how much you hate SCA and want absolutely nothing to do with it.

Guess what? Both mentalities are ok, neither of them make life easier, and you are not a better person for choosing one coping strategy over the other.

I advised you to find a support group and start a blog because – as an English teacher – helping people through writing is kind of your thing. Now, you’re going to have to stop teaching someday, and that’s going to suck. But it’s ok because you’re allowed to have more than one “thing.” 

In fact, have a baby. That’s a pretty good “thing” to have.