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Thursday, 28 June 2012

Anxious About The Affordable Care Act...and Looking Back at my Brain AVM


It's a big day for America. The Supreme Court is making it's public ruling on the Affordable Care Act. True to my form of investing much more emotionally in the politics of other countries than I do my own (except in election time in Canada, when I'm a real bear for six weeks), my stomach is tied up in knots over this.

I can't really say why. Perhaps it's because, being from a country that has universal health care, I hear about things like death panels and about how children with disabilities will suffer if the Act is brought in, and I get angry and think "That's *so* not how it works!"

Perhaps it's because I know that I'd never have been able to afford the insurance I would have needed to even get my brain AVM surgeries done, let alone the after care. 

Perhaps it's because I have friends in the US that I know are going without medical care because they can't afford the insurance.

Perhaps I just can't wrap my head around the idea of going without treatment because you don't have the money to pay for the insurance.

At any rate, all of this has prompted me to bring out the "Grateful to Be Canadian" post that I printed on Canada Day last year a little early this year. I know that Canada's medical system is far from perfect. But I'm damn glad to have it, and proud to live in a country that believes that medical care is a right, not a privilege.

William Peace at Bad Cripple has made many great posts lately about the Afforable Care Act, but I found this one especially striking: http://badcripple.blogspot.ca/2012/06/disability-and-health-care-michael.html

Happy Canada Day!  ;-)

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My Brain AVM Story: Grateful to be Canadian


I sometimes feel like I spend a lot of time defending Canada’s health care system. I know that it’s not perfect. I can tell some stories of some real atrocities that have happened to people I love, in fact.

But it was there for my mother, right from the time that she was diagnosed with cancer to her death. She was treated, as far as we as we could tell, to the best of the doctors' ability, with respect and dignity. We were treated with respect by hospital staff as well.

The medical system has always been there for me as well, in spades. Like I said, I've been very fortunate.
I had my first stroke in the middle of a job interview in British Columbia. I was twenty-two at the time. I was rocking that interview. They wanted a coordinator for a symposium on youth violence, and I could tell that they liked me (I ended up getting the job, actually).

But it was not to be, because in the middle of the interview I got an incredible headache that came on like a train – fast and forceful. “So this is a migraine,” I thought, faltering over my words. I had to stop and explain what was happening. Someone on the interviewing panel gave me some Tylenol, and I managed to finish the interview, but at the end of it they wouldn’t let me go until I’d promised to go to straight to the doctor.

I didn’t protest. I could feel my neck getting stiff. “So this is meningitis,” I thought.

I’d only been in British Columbia for a couple of months. I’d just put my application for BC health insurance in the mail that morning. I walked into the town health clinic, put my Ontario health card down in front of a receptionist who didn’t know me from Adam, and said, “I think I have meningitis.”

Five minutes later, I was in a doctor’s office.

Five hours later, after an ambulance ride to the nearest city, I was checked into the nearest hospital. I’d had a CT scan and a lumbar puncture and I was scheduled to be transferred to a larger, more specialized hospital in the morning.

Five days later, I’d had an angiogram and I’d had been diagnosed with a brain arteriovenous malformation, or brain AVM (check the Glossary on the About Me page for definitions of unfamiliar terms). A consult had been set up for me in a brain AVM clinic in a Toronto hospital, and I was cleared to fly home to Ontario.

Five months later, I’d been seen in the brain AVM clinic in Toronto Western Hospital twice.  The doctors had decided on a course of treatment based on another angiogram: embolization to reduce the size of the brain AVM, and then a craniotomy to treat the rest of the brain AVM. 

The surgery didn’t go as well as they’d hoped: A small segment of brain AVM could not be treated. I later had a stroke that had significantly compromised my left side. My treatment team was arranging in-patient rehabilitation at Penetanguishene General Hospital, closer to home, so that my father wouldn’t have to do so much driving. They were just waiting for seizures to stabilize before they sent me.

PGH kept me for as long as they could, and then sent me to Ottawa Rehabilitation Centre, which kept me for as long as they could. My in-patient rehab was seven months in total. I still see a seizure specialist (and, because I didn’t like the first one to whom I was referred, I asked if I could switch, and I was accommodated).

When It All Comes Down to Money


There’s a chance that I wouldn’t be here if the medical system hadn’t been here to support me the way it had through the brain AVM ordeal. My family would not have been able to afford my brain AVM surgeries, let alone my aftercare and rehabilitation, if we’d lived in country without universal health care. 

As I said, the system isn’t perfect...and I really feel for people that have had a bad outcome because they've been put on a waiting list or because they've had to sit in an ER too long.  That absolutely shouldn't happen. But I can’t imagine living in a country where people sometimes go without treatments that they need simply because they can't afford it.

It makes me grateful to be Canadian.

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