Wheelchair Use: I’m in it for the Parking
A common concern accompanying Ataxia is “ending up in a wheelchair.” I read that phrase on one of the Facebook Support Groups almost every day. I get it – I used to be frightened of becoming wheelchair-bound, too. And with it comes this overwhelming feeling of dread, embarrassment, uncertainty, disappointment…
But, as a current wheelchair user, I’m going to attempt to dispel that anxiety. At the very least, I hope you find some reassurance, confidence, and comfort here.
Now, as always, this post isn’t for everyone…
It’s just that I’ve found it very common for people of all abilities to view a wheelchair as a sign of defeat. And, as that phrase so subtly implies, an “ending point.”
A wheelchair-user with Ataxia must have just “given up,” right? They are officially disabled, now. They should have been exercising and going to PT and using a better walker and installing handrails everywhere… Them not walking anymore must mean Ataxia has completely taken over their life.
I started using a wheelchair when I was pregnant – it’s not easy moving around with a human growing inside of you, regardless of Ataxia. I bought it primarily for safety when going to appointments, and was convinced I’d go back to using a walker after I lost 20lbs and my very round figure (aka gave birth).
And I sure did try for a while – a newborn and covid quarantine all at once guaranteed I could practice using my rollator constantly since I wasn’t leaving my house or having anyone over anytime soon.
But, turns out, there were suddenly more important things in my life. Like being able to hold my baby and still be able to move and not worry about dropping him. Or being able to put dinner in the oven and take it out without anyone’s help. Or being able to quickly get to another room of my house without the possibility of falling. Or minimizing chances of hospital visits during a pandemic.
I knew the safety, confidence, and comfort I felt when using a wheelchair – why was I giving that up?
Trying to stay out of a wheelchair was giving Ataxia more control over my life than if I just used one.
You see, falling is a pretty common occurrence when the part of your brain that controls balance is malfunctioning. Even though I could move easier once I was done being pregnant, that didn’t eliminate my risk of falling. I knew people who worked out every single day and still fell sometimes.
But want to know what I haven’t done in almost a year?
True, “walked” is a valid answer. And, don’t get me wrong, not being able to walk sucks. But that constant fear of falling sucks way more. I was so scared to use my rollator if my husband wasn’t home. I realize that’s more of a mental barrier than a physical one… But I completely eliminated that anxiety once I decided to use a wheelchair.
The guaranteed safety that comes with a wheelchair has afforded me so many opportunities and much more independence. I’m not worried at all to be home alone, nor am I worried about going out in public either. I can use both hands to grab something since I don’t have to hold anything for balance. I can wear whatever I want on my feet because sticking and sliding is no longer a concern.
Plus, I no longer get stared at in public. It’s much more “normal” to see a young girl in a wheelchair than her drunkenly walking with a rollator. Strangers tend to be more accepting and accommodating when faced with something they’re more familiar with. I’m not going to lie, it’s nice not having people immediately internally question my disability.
I like not having to “not care what people think.”
I’m not saying it’s an easy, awesome transition to make. I had to remind myself that I can’t deter the progression of this disease. The only thing I can control is how I handle these progressing problems.
So, my potential eventual wheelchair users, remember not to be swayed by opinions – your former one included. You’re the one using it, so yours is the only mindset that matters. It’s ok if walking isn’t your priority. A wheelchair is a mobility AID, a tool to help you accomplish other goals. It is not a sign of failure or giving up.
You are so amazing. I always learn something from your posts.
Well said. I have an unknown ataxia, diagnosed in 1998. I’ve tried many types of bodywork, PT,etc., with my goal of postponing wheelchair use. I always viewed using one as giving up. After several falls this year, and thinning bones, I now use one inside, using my walker when leaving the house. My perspective is changing, life is easier in many ways when I’m safely sitting down. Thanks for reinforcing my decision.