Tuesday, 4 June 2013

New Wheelchair

I am going to get my new wheelchair in a few minutes. This new chair has a lighter frame, larger wheels, pneumatic tires and will be easier to push. This ease of motion becomes all the more important as my arms weaken and I lose my hand strength. The pneumatic tires will give better grip and the frame, while lighter, is actually stronger than the chair I have had for the last six months.

That's how long it has taken to arrange this new chair. In part this six month wait has been because of my application for government funding for the chair. That process took about three of those months. Ordering the chair took another month. The two months at the beginning were me, struggling with how to pay the $4,500 cost of this chair.

The government, in its infinite wisdom, has decided that I don't "qualify" for a chair of this quality. The assessment of Alberta Health is that I will not live long enough to realize the full benefits of a higher quality wheelchair. Some nameless, faceless bureaucrat in an office hundreds of miles away has decided what my quality of life is worth based on a longevity and utility chart. For the government that makes sense; for the individual it is an awful reality.

That's the thing about ALS; you live long enough to see yourself die a bit each day, but you live in steady decline with a statistical average life after diagnosis of less than three years. It's not long enough to write off the cost of a decent wheelchair, so the best the government will do is cover part of the cost of a clunky, heavy, hard to push temporary chair like the kind you see at hospitals.

So I ordered the new chair regardless of government funding and cost. I don't care how long I live; I care how I live in that time. Money is useless after I am dead; I am going to use what I have to improve the quality of my life in the here and now. Regardless of what that bureaucrat says, I think my quality of life is important regardless of duration. I want to live before I die.

Paying for this new wheelchair is a whole different story. I will figure that out. I always figure this stuff out.

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