eSCAping Type 1

One of the toughest parts of having a rare disease is having to figure out a lot of it on your own.

Chances are, there isn’t a role model in your life whom you can use as an example. Your friends and (usually) family can give suggestions, but not experienced-derived advice. Plus, even if you know someone with the same disease as you, you’re likely to have different realities. That’s definitely true for Ataxia, where our symptoms and rates of progression are as unique as the condition itself.

When your disease is progressive, you also get the added challenge of having to figure out when to “call it quits” on certain activities. Sorry, Ataxians, but no amount of physical therapy or positive mindsets are going to keep you walking forever. Until there’s a cure, our cerebellums are going to keep on deteriorating no matter what. 

So, how do you know when to stop doing something without feeling like you’re just giving up?

From an outsider’s point of view, we might seem lazy. When they see us walking one day, and then using a wheelchair the next. Or not going somewhere simply because the drive there is longer than the one we barely managed last week. Or ordering pizza when there are plenty of ingredients to cook with at home that require the use of a sharp knife, hot oven, and balance.

Not only do we have an invisible illness, but it’s rare – people can’t see what we’re dealing with, and have no one to compare it to, so it can be really difficult for them to understand.

Which then, of course, leads to frustration. And self-doubt. You almost start worrying that they’re right. Maybe I am being lazy. I’m young, I don’t need a walker yet. I just have to try harder. My grandma has arthritis and doesn’t use a wheelchair. If I stop walking independently now I’m basically just quitting. 

We need to recognize that change is not the same as giving up.

Accepting your disease is not the same as letting it win. You’re not giving it control over your life – you’re adjusting to accommodate new challenges.

I bought my first rollator right before my sister’s wedding because I wanted to drink and dance and visit tables without anyone having to help me. I bought a wheelchair because I wanted to go to an Antique Sale with my husband without getting tired after 10 minutes or worrying about me bumping into and breaking something. I wasn’t giving up walking; I was finding a better way to keep doing what I enjoyed.

I stopped driving the day I read about a woman hitting the gas instead of the break and crashing into a building. I realized I could easily do the same thing. Plus, the feeling in my feet and my reaction time were both diminishing; if something ran out in front of me when I was driving, I’d definitely hit it. No one took away my license, no doctor told me to stop, nothing happened besides a random, personal thought. But I’m pretty sure I saved some lives with this call.

I wrote a whole post on why I stopped working before I was 30. I now realize that had I tried to work another year, I’d be so stressed out and exhausted all the time, there’s no way I’d be a good teacher (or human being, for that matter). Plus, I never would have started this blog. So many hidden benefits.

I can’t control this medical condition, but I can control my outlook on it.

Now, I’m not naive; Ataxia SUCKS. I get randomly, super upset and angry because I can’t do things I used to be able to do without a second thought. It’s frustrating never knowing when you’ll lose certain abilities that seemed so natural to you at one point – especially basic, fundamental skills, like walking and talking. There’s definitely a lingering depression no matter how positive your perspective might be.

It’s not fair. And for anyone who just read that and thought, “Life’s not fair” or “Someone out there has it worse than you,” please go chase cars.

I mean, it’s true, someone is always worse off than you. And it can definitely be helpful to remember that. But that doesn’t mean your problems aren’t justified. Just because I have Ataxia doesn’t mean you can’t complain about having a cold.

It bugged me to no end when parents and coworkers would say that high schoolers shouldn’t be stressed.  “They don’t have bills or marriages or full-time jobs or real responsibilities – any problems teens think they have are trivial and pointless.” Sure they don’t have “adult” problems, because they aren’t adults! That doesn’t mean their adolescent issues aren’t valid.

Just because someone’s problems are different from yours doesn’t change their value.

I guess I’m trying to say that your problems are exactly that – your problems. Despite the severity, we can’t expect people to understand them… so we also can’t expect them to appreciate our solutions.

If you think an outfit might be inappropriate, it probably is, otherwise you wouldn’t have had that thought. Similarly, if you think you might want a wheelchair or maybe you should stop driving, go ahead and make that change – it crossed your mind for a reason. You kind of have to learn to trust your gut.

Admitting you can’t do something anymore takes a lot of bravery, since you’re also dealing with everything that comes along with it – other peoples’ reactions included. So, it doesn’t matter if they think you’re “giving up,” as long as you know that that’s not true. Ataxia takes a whole lot from us without our permission, don’t let anyone’s opinion – especially your own – do the same.

What I think I’m getting at is that there’s rarely a right or wrong answer, otherwise life would be a whole lot easier than it is. You do you. OK, I’m done.