eSCAping Type 1

In one of my first posts, I made a point to say, “I have Ataxia. Ataxia doesn’t have me.” Separating yourself from your disease is an essential part to being able to stay sane and happy.  If you have a chronic illness, it’s so important not to let it control your life. So important, yet so difficult.

I no longer work, and I no longer drive, so every day it’s just me, Bogart, and Ataxia chillin at home. And as my disease progresses, I find it influencing me more and more.

People often bring up concerns over “cabin fever,” but honestly, that’s not as much of an issue as you’d think. You see, leaving my house causes so much anxiety it’s insane. The whole idea of the unknown is not ideal for someone who literally has to think about every step they take.

Are there any stairs where I’m going? What about those casual level changes between rooms that are considered steps not stairs so no one mentions them? How many stalls are in the bathroom? Where is the bathroom? Should I bring my walker or my wheelchair? Who will be there? Will it be crowded? Will we be standing or sitting? Are we staying in one spot? Will I have to talk a lot?

It’s definitely easier to just stay home. But that’s also a good way to let your disease dominate your life.

A couple weekends ago, I didn’t post because I went to my best friend from college’s wedding. Let me tell you, my brain was not having it. You’re going to go four hours away from home to talk to people you last saw in college where you were probably running to a bar in heels… Ataxia so nicely reminded me of how very different my life is now. 

I had no idea what the bathroom situation would be. I knew there would be stairs, but I also knew they had one of those elevator chair things that embarrassingly grant you easy access in the most noticeable way possible. BUT my anxiety had already prevented me from attending her shower and bachelorette, so it sure as hell wasn’t winning this one, too.

And, despite forgetting both my walker and wheelchair at home (yeah.), I am SO HAPPY we went.

Starting right away with the drive there. I didn’t think I had cabin fever until I saw those trees. The Hudson River Valley is probably the most beautiful place in the world in October. I can’t believe I almost forgot how gorgeous this season is, and how free I can feel from the passenger seat of a car. Another road trip is entirely necessary, as soon as possible.

Then, once we got to the hotel & explained our situation, they found a spare wheelchair we could use for the night. And they switched us to an accessible room. And offered me a shower chair. And comped us for the room change.

Then, at the venue, the workers were readily waiting to help me with the chair lift, and did it so quickly and easily and no one stared. They even had the “Employee Only” restroom on the second floor unlocked for me so I wouldn’t have to go back downstairs at all.

I saw and talked to college friends who either read this blog and know all about SCA or are just awesome at treating me like it was completely normal for me to be in a wheelchair with difficulty speaking. 

And I know it’s super cliche to say, but my friend was THE MOST BEAUTIFUL BRIDE EVER. The ceremony was uniquely perfect. The food was amazing, the venue was gorgeous, the music was excellent. Plus, in lieu of wedding favors, they made a donation to the National Ataxia Foundation. I swear I’m not crying…

Basically, my anxiety was 100% unnecessary.

I know that’s a completely unique and personal experience. I know my amazing husband played a key role. I know controlling anxiety takes a lot more than a mantra. And I know that some nervousness in some situations is good.

But I also know how important it is to not deny yourself something just because it might go wrong.

Chronic illness or not, the whole “Risks vs Benefits” game is a brain’s favorite. And while I’m not telling you to ignore logic, I am telling you it’s okay to take chances. To “feel the fear and do it anyway.“

Please know, mental illnesses are VERY REAL and cannot be cured by simply plastering a smile on your face. Telling someone with depression to “just be happy” is kind of like telling me I’d probably feel better if I just tried running. However, like any other disease, you can fight the control it has over your life.

A lot of times we avoid that social anxiety by being antisocial. But I think we tend to underestimate the kindness of people; they’re willing to help, they just don’t always know how. You’d be surprised at how much you can do if you just let people help you.

The anxiety I have leading up to an event is almost always exaggerated, does absolutely no good, and is completely in my control. Well, more so than Ataxia, anyway. Fear shouldn’t restrict you when your cerebellum’s already doing a fine enough job of that on its own.

Maybe it’s not a wedding. Maybe it’s just a trip to the grocery store. Either way, it’s more exciting than sitting at home. Even if you’re not bored, I bet you’re not living life to the fullest and all that. So why not try?

Sometimes you have to step outside your comfort zone to create a new one.