eSCAping Type 1

We live in a time where social media has an overwhelming impact on society. The positives and negatives could be debated forever – it’s impossible to choose a side because, the fact of the matter is, there’s always both.

Especially when teaching high schoolers, you’re exposed to just how terrible social media can be.

The amount of time wasted struggling over student cell phone use is unreal. The number of teenagers constantly smiling at their crotches was insane. I also loved commenting on these interactive books I never knew were in my room – sure, it looked like The Scarlet Letter on the outside, but somehow these kids could watch videos with it open instead of reading.

Drama ensued no matter what app was popular at the time, between subtweets, Finstas, and Snap stories that were supposed to be private, I never heard the end of it.

But, the thing is, is not much changes after high school either.

Who knew there were so many stay-at-home politicians whose associate degrees gave them insight as to what would really actually benefit our country? Who knew you could vacation to Belize for free just by investing all your money in a weight-loss shake? And who knew so many people had the time, energy, and motivation to not only post about it, but then defend their factual opinion at any cost?

Drama is replaced by this weird competition over whose life looks and sounds better right that second.

And I know I’m a hypocrite. I literally spew all my thoughts here every week and feel super strong emotions based on complete strangers’ reactions to it.

But the positive impact social media has had on my life is way too substantial to refute anymore.

And, ironically enough, I’m going to use this post to tell you how awesome the internet can actually be.

Let’s start with my favorite app – Instagram.

I love getting a beautiful snapshot of peoples’ lives at the click of a button.

A lot of people have been saying the app is depressing since you’re subliminally comparing yourself to others, but I honestly find it inspiring.

While working, #TeacherGram was my slight obsession. And I sure am going to #hinch my way to happiness by cleaning my house for 20 min a day. I might not be able to go everywhere and do everything I see, but I sure can live vicariously through the people I follow. Plus, memes are hilarious.

A few years ago, I was celebrating Rare Disease Day by stalking strangers online, of course. I didn’t know anyone outside of my family with Ataxia, and I hadn’t yet told anyone I had it, so I wasn’t posting anything.

But, in an act of complete boredom, I clicked that #showyourrare hashtag… and was immediately exposed to people around the world with the same rare disease I had! Why this came as such a surprise to me, I have no idea.

I found myself in the best social media rabbithole. This FA ambassador follows a guy with Ataxia who bikes cross-country, who just commented on another girl’s post showing off her new walker, who’s friends with a mom with SCA who swears by pilates, who knows another guy with EA who just went to Ireland… 

There were people my age who were experiencing the exact same difficulties as me!

In literally a matter of seconds I went from feeling completely alone to, well, not. And I hadn’t realized how isolated I felt until I saw how easily it could be fixed. Up until that point, I hadn’t realized the true benefits of Instagram; suddenly I was seeing places I could go and things I could do.

People with Ataxia living life to the fullest was all the inspiration I needed.

Complete strangers have helped me so much, and they’ll never even know.

Instagram alone encouraged me to buy a walker, to join CoRDS, and to finally be open about sharing my disease with the public. Trying to hide something like this for as long as I did was exhausting.

In a nutshell, that’s why I started this blog. It was so uplifting finding people out there with Ataxia; why not try to do that for someone else? Plus, I’m now unemployed with a super valuable bachelor’s degree in creative writing, so a blog seemed like a good idea.

And then there’s Facebook.

The nice part about Facebook is that there’s a group for absolutely everything your curiosity may desire.

When I started this blog, I quickly joined six different Ataxia support groups, so that I could promote my posts to people who really understood what I was writing about. And right away, my feed was the most depressing place ever. This endless stream of continually updated problems: people being denied SSDI for the third inexplicable time, neurologists who had no idea what Ataxia was and were far from professional about it, mysterious symptoms that appeared overnight, ignorant family who hurt more than helped…

The worst parts of this disease were constantly in my face. Honestly, I dreaded posting anything on Facebook – opening that app was a sure way to make me instantly sad.

Then, one night, I read a post from a woman asking if anyone could call her. She was upset about having to use a wheelchair for the first time and just needed someone who actually understood to talk to. Right away, responses flooded her comment; complete strangers messaging her for support, sending her phone numbers and time zones, no questions asked.

And I got it.

Why not post your problems on a group board with members who are literally dealing with the same things so that they can offer solutions, or at least a sign of understanding that you’re not alone? Why not vent in a place where you won’t be accused of just wanting attention? Where people don’t pity you, but instead are angry right along with you? Whose recommendations come from actual experience?

Yeah, Ataxia support group boards are often depressing, but so is this disease.

Instagram is nice because people only want to show their best lives. Facebook can be more private, and therefore more real. (Except those people who post page-long public statuses about personal issues that they feel everyone needs to know about. Dude, get a blog.)

I dabble in Twitter, and am finding more value in Snapchat, and have a really strong love for Pinterest.

These are all excellent tools as far as procrastinating goes. But, like I said, they’re tools that have potential to be used in positive ways with truly endless possibilities, when used correctly.

So, get out of that angsty teenage phase – you are not the only person in the world dealing with what you’re going through. Find the support that’s definitely out there. You’re not alone; let social media help you.

If you have Ataxia, I recommend following & joining:

Instagram – being_leah, fightingfa, kelbarendt, thewheelsammyrose, lifewithfa, christinarosecordaro, kylebryant

Facebook groups – National Ataxia Foundation, Under 30 with Ataxia, Spinocerebellar Ataxia Awareness and Research Support