What happens when you can’t use your wheelchair?
The past several months have been unrelentingly stressful because of my little old wheelchair breaking down. It started in the summer. I’d stop driving for a moment, and then the next time I’d go to move – I couldn’t. The lights on the small control box flashed when I pushed the joystick forward. Stuck. At first, all I had to do was turn my chair off and back on once and I’d be good to go again for a long time. But further into July, it definitely started to happen more and more. And it took a lot more tries to get it to come back, too.
Throughout the summer we decided to stick to small day trips while we tried to get it either fixed or get a new chair altogether. Stuff like going to Target or the mall, maybe to the park down the street. We figured it wasn’t worth risking my chair crapping out in Orlando or Disney. Aaaand then one day at Target, my battery level tanked from being full to in the red. Like a flip got switched. There was no gradual loss, the battery was just suddenly dying. Which meant, we had to rush home and I couldn’t move for the rest of the night.
That’s been my life since. I go to work and I come home because my chair literally will not last long enough to do anything else. Some days, even just going to work seems to be pushing it. After every shift, I just cross my fingers and pray it works just long enough for me to make it to my car.
Luckily, I am in the process of getting a new wheelchair which is long overdue.
And believe me, I know I’m incredibly lucky that I do have insurance that will cover it because there are so many people who just have to go without. But getting it is a long, tedious, and difficult process which only adds to the mountain of stress having a broken wheelchair will throw at you. As soon as my new chair comes, I’m going to write all about the entire experience – from fighting with insurance to getting fitted for a new chair.
But for now, I just wanted to talk about what it’s like for a full time wheelchair user to not have a chair to rely on. When I tell people what I’ve been dealing with, it doesn’t seem to quite sink in just how serious of a problem it is. Understandably, because if you’re abled, there’s not really a similar experience to draw from.
From my conversations, it seems like people sort of relate it to a car needing repairs. I understand where they’re coming from. Your car breaking down is definitely a big deal, but it’s not quite comparable. For those who can afford it, if your car breaks down, you just take it in and get it repaired. That, or you get rides from someone else. You can use public transportation. Worst case scenario, you go buy a new car. But I can’t just borrow a friends chair and renting one is almost $1000 for a month. My wheelchair cost more than my friends’ cars, and I certainly can’t afford to buy a new one. So, I’m at the mercy of Medicaid.
Plus, my wheelchair is a lot more than my transportation to and from places. I’m not being dramatic when I say that my entire life essentially revolves around me having this chair. If the chair stops doing what it’s supposed to, then pretty much everything else starts to suffer.
My life outside of work comes to a screeching halt.
Going anywhere just for fun is pretty much out of the question. Waiting on a new chair, or even repairs can take a reeeeeally long time. I have to prioritize every time I use my dying chair, aka – I just need to be able to get to and from work so I don’t lose my job. My mom has been working hard to help me find a loaner until I get my new one but we haven’t had any luck yet. I can’t use manual chairs, and power chairs are hard to come by. So if my chair loses the small bit of function it has left there isn’t much I can do. I just won’t be able to go to work. I think that’s one of the most stressful things about this situation. It’s literally threatening my job security.
Everything else comes second to my employment. Besides, once I get home from work now, the battery is usually about to die anyway. Technically my chair can be pushed. But it’s also a few hundred pounds so it’s not very practical to have anyone push me for more than a very short distance. So, aside from my shifts, I’m basically homebound. It’s a really boring and isolating way to live, even temporarily. And it puts me in a pretty crummy headspace.
Knowing that my chair could completely die any day now fills me with constant looming anxiety and depression.
In the morning when it’s time to leave for my shift, my whole body fills with dread at the thought of having to call out last minute. At the end of my shift when I’m about to back out from my desk, my heart races. Scrolling through Instagram feels like actual abuse sometimes. It’s pretty hard to not feel jealous and left out when you only see your cubicle and maybe get to socialize when people are able to visit for half a day every other week if you’re lucky. It’s no one’s fault and I know that I’m overly sensitive right now, but it still sucks. Wheelchairs are freedom, but when they’re no longer working as needed, you feel decidedly not free.
I never feel “trapped” or “confined” in my chair until it’s not working.
Not only do I feel stuck in my apartment, but I feel stuck in my chair. There’s nothing more frustrating than pushing my joystick forward and not being able to move. Not being able to go play Mario Kart with my brother or to go my desk to grab something. Not being able to recline when my hips are hurting or being able to turn around to see my cats being cute.
I keep saying it, but whether or not my chair is functional affects pretty much everything I do. Like, every single thing. From going to the bathroom, eating a meal, or writing. I haven’t been putting out as many posts lately because I feel mentally exhausted every single day. I have to plan my activities around my chair and how well it’s working that day and decide if it’s worth fighting with to do X Y or Z. Often times it’s not, so I just park and watch tv because it’s the only thing that doesn’t feel like a struggle.
For someone like me, a functional wheelchair is completely essential for day to day living.
When it’s not working, it should be treated as a serious problem, as an emergency. But in my experience, it rarely is. I’m met with a casual ‘that sucks’ and nonchalance from the people I rely on to fix the situation.
My wheelchair isn’t a luxury or a toy. It’s not a car or an accessory. And it’s definitely not optional. It feels very much like a part of me, and it really sucks to try to live without it.