Today was my anniversary of becoming a full time outdoor wheelchair user (still have some walker use inside, though I keep hitting walls and getting stuck). I remember my second day outside I went to the oceanfront cliffside path determined that “this wasn’t going to change me” and the woman who would be doing my wheelchair seating for my permanent chair was walking her dog as I labored in a front heavy, too small wheelchair. She told me she kept saying to herself, “Don’t stare at her…..she probably feels bad enough being is such a badly fit chair…..just don’t stare.”
Of course people DID stare because a) I did not have a lot of control, particularly of a front heavy chair and b) I was in a wheelchair and if you are in a wheelchair, people stare, except when you need to get somewhere and then they can’t see you and get in your way. However, I was not concerned too much about the mortification of being in a BADLY fitted wheelchair (This woman takes her job VERY seriously….maybe too seriously). I got the wheelchair because several medical professionals I respected pointed out that since I was falling down even with my walking poles about 8-12 times a day, and I couldn’t go more than a block or two: that it was only a matter of time before I broke something, maybe inside my head. Of course, my GP was puzzled at the request because he had not yet figured out what I had: Diagnostics, that was the key! I ended up with four wheelchair prescriptions in the end though.
I could go farther in the chair than I could walking. I could take the bus and go to a mall. I could do a 5K along the waterfront trail. It was only two days until I had my first woman get a trembly chin and go, “You’re so…..SO…….you’re still smiling.” And walk off across the grass where I couldn’t follow her leaving me puzzled what that was all about. But hey, who was I to judge someone else’s mental condition?
That is still true today, I might only be able to go a few blocks every other day but that is a LOT farther than I could get any other way (well except using that electric wheelchair I was given and am too proud and scared to use – I hit things in it….a lot!)
Anyway, today was a lot of trying to do things but not actually doing them; I overexerted myself at badminton which meant that I couldn’t sleep this afternoon and needed pain pills, muscle relaxants and more sedatives than I use for a whole night to sleep just over 1 hour (but three hours of trying). Then Linda and I spent a great deal of time finding JUST the right hotel in Tokyo: wheelchair accessible, near the Yaoi theme café (No men allowed in past 4 pm as all the “waiters” are females in androgyny men’s uniforms (and coats with tails). An extra fee gets you a seat at the “bar” where you can have an intimate conversation with the “bar man” (female). Yeah, my kind of place. Also near the Ghibli Studio Museum, which is wheelchair accessible. Only on the phone when I asked about if it was quiet did the “construction outside” come up, and how it is quiet “not at day” – well, for someone who needs to sleep in the afternoon, that kinda sucks! So in the end, we spent MANY hours and managed to make ZERO reservations. And that was our day. I did get, thanks to Michael/Raccoon’s recommendation, AirMed coverage which will evacuate me if I am hospitalized on a private plane back to Canada with my own medical crew. So, if I have a heart attack or am hospitalized for any reason, I can be flown back to Canada under this coverage. This is travel insurance for people like me who have at least 20 pre-existing conditions.
Other than that a pretty crappy anniversary. But then, I am just trying to get on with getting on. I don’t really know if I would recognize myself from a year ago. In many ways I feel that, often housebound and with all the medical hassle and pain, I am flying (maybe because falling seems so similar until you get to the bottom). For the first time in my life, I don’t hate myself for not achieving enough, fast enough, working hard enough. I mean, sure I still have my, “Oh, wanna cut!” moments and I would like to do more, but I am pretty okay being me. I recently finished a piece for women’s day coming up next month and they asked me, “What do you want by your name?” meaning how should we introduce you, what accomplishment or other aspect do you want to be associated with? I wrote back: Canadian female, new wheelchair user.
No, I am not my wheelchair. But if you ever wanted to put on a pair of glasses that changed how you viewed almost everything forever, it is a quick trip. Coming out sexually wasn’t the same because I KNEW, just everyone else didn’t. Here, everyone else thinks they know…something because of the wheelchair and not even I know for sure what the chair and I together mean. To tell you the truth, I’m not even sure if I am disabled or just ill and melting a bit like candy floss in the rain. I read the people who have been in a wheelchair a decade, or two and I don’t know what that means. I have finally had a metal bit fall off my chair, so it might be considered “worn” (hard to make a piece of solid titanium look ‘worn’). As the main character is asked in the book A Pack of Lies, “Where are YOUR people, YOUR home, YOUR belongings, why are you always here, just reading and spouting stories.” And the main character took a bit of metal, a toy soldier out of his pocket. “That’s not a home.”
“It’s a start.” He replied.
I guess that’s what I have to say about this year: It’s a start.
1 hour ago