Friday, September 14, 2007

A mistress, non-phone sex and saying the "H" word

Well, I was gone blogwise a few days and it turned out that I had a more intimate engagement than with a date or with Linda. A meeting with my old mistress: Pain. The news that chronic pain really, really sucks probably isn’t a shocker. It makes you tired, and irritable and it is hard to find life's pleasure.

Plus, Linda and I both hit burnout. I had been emotionally surviving by looking ahead and trying to see a life that wasn’t the equivalent of being buried up to the neck in shit underneath a latrine. It turns out a lot of this was based on the summer and how I would do things and go places. Only that never really happened, and now, unable to return to boxing classes, unable to wheel until about November, the thought of winter in a wheelchair seem too much like a metaphor for my life.

Add to this my crappy intrusive homecare company is closing because they don’t want to match the Island Health Authority bid, which means that a) now the ‘to be filled’ spots on my schedule are even more likely to have no one show up and b) most everyone who does show up is dispirited, grumpy and complaining to me about earning so little (this I find rather bitter fruit as Linda is piling on the overtime at no pay in her government job and we can’t make ends meet; plus I have yet to find a way to make money appear in thin air by obsessing about it).

I tend to rate my home care company as crappy because while Linda was away a) on two entire days, no one came b) When one person finally did come, they concluded I was dying, notified the office and it was noted that next morning a check up visit to evaluate me to go to the hospital should be done c) That visit was never done d) When I talked to D., the head manager about why that wasn’t done and how he planned to follow up on that he seemed pretty puzzled, “follow up?”

“Yes,” I said, “Follow up. If you were supposed to come check on me because I was dying, and that was recorded in your computer, why did no one come? That seems a pretty big hole in the health issue to me. What specifically are you going to do about it?”

Since I never heard back from him, I guess what he planned to do about it was go out of business and let the 650 home care workers go. Or he knew that already and couldn’t give a toss. Plus it seems he likes to read this blog, which he found once he had my full name given to him with my medical information (Yes D., this site has a tracker that tells me where people access it from, even the exact terminal location). The disability center says that his use of my medical information to electronically snoop on me might constitute a Canadian Human Rights Violation. And as appealing as a six year case in order to have some micro-manager slapped on the wrists sounds (not), I have better things to do. Well, actually I don’t, but I will try to find some.

I cheered myself up this week by figuring out the last conversation I have had with someone who wanted to talk to me who I wasn’t paying. No I’m not talking phone sex, I mean a conversation not with a home care worker, or doctor or someone selling me coffee. If you exclude Linda it has been around eight months I think. So I decided to end the day by making a music video of what was a happy time for me – getting (renting) and riding my upright wheelchair bicycle/handcycle. Cycling that way is hard work but comparing to a wheelchair, it really grooves (as does my tie-dye top). Now that my shoulder is all screwed up, those days seem even further away. In the same way people tell me weekly, “I don’t know how you stand being disabled” (because it was obviously a career choice or something like that, I just must have missed checking “University Professor” and ticked the box below it – darn it!). When my neighbor asked how things were and I told them about the tendonitis, they said, “I always though you should have an electric wheelchair anyway, why push yourself with all that effort.” Which depressed me pretty bad: yeah, why bother trying, apparently everyone else has already written me off. Anyway, if you waded through this depressing post you can watch the vid – which has very upbeat music since I timed the whole thing (took me hours) to hit the beats for the pics and arm movements; and you know what, fuck it, my life IS heroic, and will continue to be so as long as I see fit (see, now the feminists AND people with disabilities can hate me).

7 comments:

Ruth said...

Nice video! I love handcycling and can't wait to do it again once/if my shoulders heal. I understand the thought of dreading a winter coming up after a summer of "not much mobility" - ugh. Last night a friend of mine called and told me I HAVE to get an accessible van and I told her I can't fix that - much like materializing money out of air accessible vans don't come out of thin air either! As for heroism, I have no problem if someone else disagrees with my POV, but I've just had my fill of being the subject of inspirational pieces.

Elizabeth McClung said...

I know where there is an accessible van by someone who doesn't have a disability (they use the ramp to load groceries and stuff) - so we could steal it!

I've always considered someone choosing to get out of bed when there is not only no reason to do so but when even society is saying in deeds, you don't matter; that's heroic. I have and still feel that, for instance, a person with severe depression, seeing and feeling no relief and continuing anyway based on a belief of some far off day of relief or simply sheer obstinancy to be overcoming a challange as great as those who climb everest.

While the community may hate the H and the I word, I think we might need a few more ordinary inspirations quite honestly, becasue the AB world isn't giving me any - people who keep going and keep working out ways to find some happiness or at least personal meaning - I need that kind of inspiration. People with disabilites who happen to have done a "by my bootstraps" and keep claiming "I'm not disabled, I'm just another person, anyone who looks within can do this." aren't inspirational, they are downright depressing.

Sally said...

Move to the UK - it wouldn't help the pain, and its not as big as Canada, but you would get state benefits to lease a wheelchair accessible vehicle and a budget from social services and the Independent Living Fund to hire your own staff.

This, I know is no consolation, but it highlights what is possible.

Also, have you read Dave's blog.
http://davehingsburger.blogspot.com
about VITA, a different kind of care giving agency - again, not in Canada, but he is a professional in this disability world and a wheelchair user and he may be worth contacting.

Sorry, apart from a hug and sending best wishes, that's all I can do. Keep blogging on.

Daniel, the Guy in the Desert said...

It appalls me how badly Canadian health care sucks. They're one of the models the U.S. is looking to. I hope you get something worked out so you don't have to be in isolation this winter.

kathz said...

It's a great video and T-shirt.

I think you're right that just getting on with daily life when things are really difficult can be heroic - much more than being a knight and fighting battles, which was treated as heroism in the books I read in childhood.

I nearly signed in as katej as she visited and used the computer to alter a setting on her blog before heading back to Wales - she forgot to sign off. We were discussing blog, pictures, photos etc and she was saying how much she liked your blog photo - certainly a good one.

D.A. Becker said...

Hmm, bitterness... one can taste it just by reading. It's a good thing, if you'd ask me.

Canadian health care sucks huh? Well if it's true what Daniel says, the USA'd better start taking scandinavia, especially Norway, for an example. They have the best, social health-care system in the world.

Godspeed.

KateJ said...

I love the video... and the bike thingy! I guess you're part-way to being a hell's angel now... maybe a hell's cherub?
I've been away for a few days beyond the reach of the internet (and not even any vodafone signal... bliss!) Downside was not being able to read my favourite blogs. So I've just caught up with all yours.
I've been to Canada many times, and always thought it a pretty good place, service-wise. I had no idea that support for disabled people was so bad. I've passed a link to your blog on to one of my cousins, who is a nurse in Alberta.