Around this time last year, I ended up in a wheelchair. Don’t ask me why because nobody knows. I’m seeing three different neurologists at one of the best hospitals in the country so you would think I would have an answer by now but yet, here we are.
I do carry a diagnosis of Functional Neurological Disorder (since 2021) but that does not seem to be the main cause of these new symptoms. And, I never required a wheelchair for it. I have more testing coming up but it’s the same old testing we have been doing. My next step is to get a second opinion
So that’s the abbreviated background. This has led me to think a lot about what it means to be a wheelchair user and here is what I’ve come up with…
Things I have learned pretty quickly about being a wheelchair user.
1. There are more inconsiderate people in the world than I thought. And, they are all taking up the handicap accessible spots without a handicap tag. OR, they are parking in the hashmarks designed for wheelchair users that need extra space to get out.
2. Not every place is accessible to me like it used to be and that includes homes of family and friends. It also includes my favorite pub/restaurant. My local library is handicap accessible except when you try to go down the aisle to check out the books and there is no room for me to get through. This applies to a rolling walker as well.
3. The stares. At first I thought I was paranoid that everyone was looking at me. Yes, they are, especially children. I’ve had the opportunity to educate some children about my wheelchair so that has been great. But going into social situations? Ugh.
4. For the love of all that is holy, please do not touch my wheelchair unless I say so. It’s an accident waiting to happen. The worst is when someone comes behind you and just starts pushing because they want to help you. It is startling and an accident can occur if I’m already wheeling myself.
5. Nobody tells you how to take care of it. I have a custom wheelchair and I am trying to figure things out on YouTube. What do I do if a tire blows? What if my castors stop working? You get the idea.
6. Where are all the wheelchair users at?? I rarely see one out in public. It would be nice to have someone say, “I get it”. My husband’s theory is that many, if not most wheelchair users, do not get out on a regular basis. I don’t know if that is true, but I don’t see them in my town.
7. “Handicap accessible”. This is probably one of my biggest hang ups. You can’t say a place is handicap accessible and then not have a plate on the wall to open the very heavy door into the building and/or bathroom. It’s ludicrous!
8. Last but not least, elevators. Being surrounded by people packed tight in an elevator, looking down on you? Awkward.
I was adapting well there for a while but most recently, not so much. I feel like my life has become smaller because of my mobility limitations. Don’t get me wrong, I feel fortunate to have one because I’d I didn’t, I’d be bed bound. But feeling fortunate does not erase the everyday challenges or limitations. It’s challenging to have to move through the world in a whole new way. And, it’s hard! In my home alone, I cannot access a whole floor, most of the kitchen cabinets, my backyard/deck, and the upper shelves of my bathroom closet and medicine cabinet. That’s a lot! At some point, hopefully sooner than later, we will be moving.
I may sound a little bitter and right now, maybe I am, but I feel that my bitterness has led to educating others about accessibility, and especially what it is like to live “looking up” at the world.
