As I write this, I’m sitting in an accordion-style hospital wheelchair, my seat cushion haphazardly forced into the frame. I have no back support. My power wheelchair has been taken in for service for the sixth time in barely three months. I’m sitting in a room at my service provider’s headquarters, an hour and a half away from where I live.
Back in June, I started having battery issues – they were dying much quicker than they should. On a two-year-old chair that I use vigorously on a daily basis, this wasn’t exactly a surprise. The fix seemed simple: new batteries. Not so simple….
My summer vacation was punctuated with walking (yes, I said walking... don’t overthink the common phraseology) no less than three blocks to find that I was still losing charge at an accelerated rate. It’s more than a little bit terrifying to have your chair batteries be at half charge when you’ve walked five blocks. It shorted out and came to a full stop (twice) when I was on holiday in another city.
My power chair is my only means of independence when I’m out in public. I do not have the strength or range of motion to propel my manual chair anywhere out of doors, or even for any considerable distance indoors. If I don’t have my power chair, I’m effectively under house arrest. So, to say, “Just use your other chair!” is really not a feasible solution.
Six service calls, most of them ending with my being told “We can’t duplicate the problem,” or, “We think it’s this… but it might be that...” or, “We think we fixed it; let us know how it works.” I’ve even been told – more than once – “If you know you’ve charged it fully, even if the display gage tells you the battery is dying, just keep driving; do whatever you need to do. You know you just charged it, so it’s fine.” I’m sorry, but in what world is that an appropriate “solution” to propose? That would be equivalent to ripping a gas gage out of a car and telling people, “You just filled up the tank, so drive until it runs out. You’re fine!”
On my way home from my first day in a postgraduate diploma program, my chair shorted out on the bus. The driver was kind enough to at least push my chair into the station, but it was five o’clock; my service provider’s offices were closed and I had to phone the emergency line. I was waiting in that subway station, unable to move, for over two hours. Until you experience something like that, you really have no idea how terrifying it is. Luckily my mother and brother were close by, so they came and stayed with me. An extremely kind good Samaritan also stayed with me, even after my family arrived. When my brother was forced to push my power chair to my apartment four blocks away, this man came with us and tagged my bother out when he needed a break. Rest assured, there are still good people in the world.
I’m a very busy person. I have friends. I work. I just started a full-time school program. Having a chair that doesn’t work and continuously having it serviced but not fixed is equivalent to breaking your legs, having surgery to mend them, only to have the surgery fail. Then imagine your surgeon looks at you and says, “I’m really stumped by this, I’m not sure what else I can do. Just go about your daily life though, I’m sure you’ll be fine.”
I’m busy and active. I have pretty thick skin and it takes a lot for me to retreat into my shell. Since June, I have lived every day with panic bubbling just underneath the surface; I’m terrified to leave my apartment. I actually don’t want to go anywhere. When getting ready to go to my best friend’s surprise party, I actually considered calling her fiancé and telling him I couldn’t come. I didn’t want to go, not because I didn’t want to see my friends, but because I just didn’t want to go anywhere.
“Agoraphobia” is defined as a fear of crowds, or being in public or open areas, often accompanied by anxiety attacks. For the first time in my life, I have an appreciation for what people dealing with agoraphobia go through because my power chair issues have foisted an ever-present, crushing level of anxiety onto my everyday life. I have enough stress to deal with and being afraid to leave my apartment for school or work or to see my friends is not anything I need.
To everyone who doesn’t have to rely on power chairs for independence, right now I envy you.
Layla Guse Salah