Sunday, February 24, 2008

Disabled Like Me: The day it showed.

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.


Gaina said...

How would you feel about the electric chair if I said 'Bond Villian'? LOL

Of course you want to get from A to B under your own steam when you can, but occasionally using the electric chair is the sensible way to go, so name it, pimp it out and make it part of your whole image!

I've tried an electric chair a few times (as in taking a friends' chair for a spin at school), and I kinda enjoyed it but that was probably because I didn't need it - needing the damn thing probably takes you into a whole other mindset about these things. I know I was unreasonably resentful of my first 'Please don't park too close - I use a wheelchair' sticker because after I had done a very 'equal' thing by learning to drive, I was advertising my gimp-dom to the world. Now that I'm older and totally comfortable with myself I wonder what all the fuss was about, but you DO go through that stage, even when you've been disabled from birth.

My attitude to my wheelchair and crutches was that if you need these accessories to make my life easier then, 'Goth-o-fabulous' is the way to go. My crutches are black and chrome, and my wheelchair is black. If your equipment matches, people more likely to be hit by that as a first impression than your actual disability :).

It's really interesting that you talk about where 'home' is and how you define yourself now because 'place' is the theme of this semster at Uni. I may call upon you as my muse at some point, if that's ok :)

FridaWrites said...

Oh, yes, staring...makes me feel like saying, "Take a picture! It'll last longer." Of course (started typing "of curse") now people stare when I walk reaaallly slowly, too, as I did yesterday for strength.

I agree with Gaina, try the electric out. It is exasperating, barely push the button when maneuvering into a small space and it goes too far, push it back, too far the other way...If the control on yours is automated the same way, use a featherlight touch so that it clicks on/engages but doesn't move yet--after a coupla secs, it will move forward ever so slightly rather than the sudden stop/start. A video/demonstration would be worth a thousand words, I know...

Of course if you're like me you get forward and reverse confused all the time, because being left handed, I think the controls should be reversed!

FridaWrites said...

PS, you beat me, I only got 3 scooter prescriptions. Still not enough for my insurance co.

Michael said...

Congratulations! Who was at your party? Did you have a cake? A cupcake with a candle in it?

I've been in a power chair since day one after my accident. They can, sometimes, be a little tricky. But only until you get used to them. I started with a rear wheel drive. It had a wide swing with the front end. I got real use to adjusting speed. My current chair is a center wheel drive. I like it much better. It has a very tight turning radius.

This doesn't mean that I don't hit things, because I do. Not very often, though. One thing about a power chair: it's a bit more difficult to tip backwards. Or to lie down. You can get them with tilts functions and lie down functions and foot lift functions, but they all work by power actuators and are not as fast as tipping a manual chair over. Better brakes then a manual, though, unless you get caught in the joystick...

People staring isn't so bad -- crossing to the other side of the street, though? That gets downright rude! It's gotten better in the last 10 years -- people don't seem to stare as much. Where I am, anyway. Be prepared for lots of stares in Japan, though. From what I understand, Asian countries are still trying to get out of the "hide the disgrace of the disabled" mentality.

Heh... I just did a google on "Yaoi theme café" and your blog came up fourth... The Studio Ghibli Museum should be a nice visit.

If you do end up actually using your AirMed coverage, let us know if you like it or not. It was recommended to me; I haven't tried traveling out of the states yet (August!).

"No, I am not my wheelchair." Reminds me of a spoken word piece I saw on youtube, with a guy in a wheelchair using a speaking board. I'm trying to find a link to that again...

So, what's your toy soldier?

cheryl g. said...

Whew, finally I have an internet connection again...

Now we need to start by pimping out the electric chair. Skull motif seat cover, skull knob on the joystick control, goth decals and paint scheme, and a holster for the modified cattle prod...

Is there somewhere nearby you can go with an empty parking lot like a church? My idea is to use sidewalk chalk to mark out a driving course and practice where you can't run into anything. Wheelchair maze with a chocolate prize at the end...

Stephanie said...

Would wishing you "happy anniversary" be inappropriate?

Reading over the past year has been very emotionally engaging and has given me a new perspective on a lot of things relating to disabilities. Thank you for sharing your experiences.

Have you considered collecting your writings here and publishing them as a book? I think a goth lesbian with a Psycho squirrel friend, in a wheelchair, fighting battles with medical bureaucracy and a tyrant landlord would be an excellent antidote to those sappy "inspirational" disabled stories that usually get published.

BTW, did anyone tell you that you were mentioned in Monday Magazine last week? It was in connection with news of a new city by-law that will provide for financial penalties against landlords whose buildings violate fire codes. The print edition also had a photo of the sign on your door.

Stephanie said...

Oh, I see you did know about Monday. Sorry. I haven't checked in for a few days and was reading the posts in reverse chronological order.

Veralidaine said...

"Canadian female, new wheelchair user."

I just have to say that I enjoy that choice.

Dawn Allenbach said...

Can't say much about self image/perception with the wheelchair -- which is quite when you realize I've been a gimp since I was a year and a half old.

Sorry, I feel like I should offer up deep words of insight, but my mental state is shit today. Probably because I'm letting something that really shouldn't bother me irritate the snot out of me. I need to shift my attitude.