Tag Archives | Ottawa Rehabilitation Centre (ORC)

My Brain AVM: Proud to Be Canadian, 2013

brain avmHappy Canada Day!

I think that enough readers have joined us since last year that I’m not going to feel badly about this annual reblog of the first post that I wrote for a Canada Day, about my brain AVM and Canada’s health care system. I’m proud of our universal health care system, despite its imperfections, and I don’t mind repeating that.

I feel very badly feel American friends who haven’t been able to afford care that they’ve needed, or whose insurance limited how much physio they could receive after a stroke like mine. I know that many people really struggle.

I know that people in Canada are struggling as well to get what they need in their health care system, even though they shouldn’t have to. Elizabeth McClung opened my eyes to that. I miss you, Beth.

In a perfect world, every patient would get the care that I did. Thanks to dedicated staff in Canada’s health care system, I am both a brain AVM *and* a stroke survivor. I’m a very lucky person, to be where I am right now.

***

My Brain AVM Story

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. The surgery hadn’t gone as well as they’d hoped: A small segment of brain AVM could not be treated. Later, I  had a stroke that significantly compromised my left side. My treatment team was arranging in-patient rehabilitation at Penetanguishene General Hospital, a facility 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.

The rehabilitation hospital 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.

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. 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…and proud.

More about the AVM Clinic at Toronto Western Hospital.

Dr. Michael Tymianski did my craniotomy.

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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 tobrain avm 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!  ;-)

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 hadn’t gone 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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My Brain AVM Story: Leaving Ottawa

I was in Ottawa today, and it brought back a lot of memories. It’s almost 11 years ago to the ottawaday that I walked out of the Ottawa Rehabilitation Centre after being in hospitals since the end of May. I’d be going home for good.

Ottawa, December 21, 2000

My last day at ORC was marked by my infamous tantrum about a day nurse that lied about me at a previous meeting being scheduled to represent Nursing staff at my discharge conference. Administration eventually declined to send someone from Nursing if I refused to have her there. This was fine, as far as I was concerned. My psychologist read Nursing’s notes, and the nurse who’d thrown me under the bus (as far as I was concerned) didn’t get to speak. It was a win-win for me, really. The whole sordid story behind that is here:  http://www.girlwiththecane.com/brain-avm-4/

All of us on the unit were leaving that day, because the unit was closed over Christmas. Some people would be returning in the new year for more inpatient therapy, or for outpatient therapy. I wouldn’t be, so I said good-bye to all my friends: Nick and Angela, and Helene, and Alison, and Katie. Some of them I’d see again. Angela and I spent a week together at her home in Ottawa in the next year, and I saw Katie a few times when I went to Kingston to visit my sister. The others slipped off my radar. I’ve tried to find some of them through the Internet, and haven’t been able to. Angela kept in touch with some of them, as she went to ORC for outpatient therapy. But some even she lost touch with some of them. Perhaps they wanted to forget that time in their lives.

I said good-bye to all my physiotherapists and occupational therapists, and my social worker and my psychologist, and the doctor that oversaw my team. I was nervous. The hospitals were friendly places for disabled people. The buildings were accessible and people were okay with me moving slowly and I knew that if I had a seizure I was surrounded by people who knew what to do. I knew that the “real world” wasn’t always like that.

Good-Bye Ottawa Rehabilitation Centre

I walked into ORC using a cane. I was shaky and I didn’t get very far before I needed to use my wheelchair, but I walked in. I was a lot less shaky when I walked out, but my wheelchair was right behind me. I needed to use it when Dad took me to the mall so that I could do my Christmas shopping before we left town.

Today, nearly twelve years later, I did my Christmas shopping without a wheelchair. I walked into McDonald’s without my cane, in fact. We don’t need a disabled parking placard for Dad’s car anymore because I simply don’t qualify for one.

It’s taken a lot of hard work, and I know that there’s still hard work to come. But things are very different than that day that I walked out of Ottawa Rehabilitation Centre, and that really struck me today.

I think I needed to remember that today – that I’ve faced challenges before and worked hard and gotten to a good place, and that I can do it again.

What reminds you that you can get through the tough times, when you need that bit of encouragement?

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My AVM Story: Bad Days in Rehab

Some of you may remember reading this entry before. Because of some glitches in my blog, it was deleted. However, I thought that it was an important one, for a variety of reasons, so I’m reprinting it.

All names in this entry have been changed.

 

Some days in rehab were good.  Some weren’t so good.

Rehab Fun

As I said in my previous post, we found ways at Ottawa Rehabilitation Centre to make the days fun. When the work day of physiotherapy, occupational therapy, life skills training, and appointments with social work, neurological testing, and vocational planning were over for the day, we had some time for ourselves. Sometimes I used it in constructive pursuits like practicing my hand-writing or practicing trying to get my scooter turned around in the elevator without hitting a wall. I never missed visiting with the therapy dogs if they were in the centre; I loved their visits.

One weekend when, for some reason, I ended up staying on the ward and a lot of other people happened to be around, we all watched “Galaxy Quest” one afternoon. It’s an amusing movie, but not die-laughing funny. Alison, however, got the giggles, and she and I laughed until we could barely breathe. We should have been asked to leave, except that everyone else found us so funny that no one really cared about the movie.

One of the patient’s families sponsored a ward Christmas party for all of us. That was the night that we found out

Fun with bubble wrap…

that Helene could tow three people in manual wheelchairs behind her large electric wheelchair. We also discovered that running over bubble wrap in a wheelchair was just as satisfying as popping it with your hands.

Not-So-Fun Days

So there were fun days at rehab. But there were decidedly not-fun days too. One night, we all went down to Arts and Crafts again, to paint plaster Father Christmas tree ornaments. The volunteer instructed us that Father Christmas’ robe and hat were to be red or green, the cuffs on the robe, the pom pom and trim on the hat, and Father Christmas’ beard were to be white, and his face was to be flesh-tone.

“Screw that,” I said to Nick and Angela. “I can barely write my name legibly. I’m not fooling around with  colour changes on itty-bitty areas. My Father Christmas is going to be all green, and he’s going to like it.”

Nick and Angela saw nothing wrong with this. The volunteer disagreed with them.

“That area is supposed to be white, dear.” she said when she came to check on our table. “Would you like a brush to use with the white?”

“No, thank you,” I said. “My Father Christmas is going to be all green.”

“But that’s not the way it’s supposed to be, dear. See mine, up at the front?”

Nick and Angela were looking at me. “I see it,” I said. “But I can’t paint those little bitty areas. Everything is going to end up green anyway. I might as well just paint him green.”

“I could help you to paint him the right colours. Would you like that?”

I was getting annoyed. “No, I wouldn’t like that. I want to paint him green. But that’s obviously a problem, so *you* paint him whatever colour you want. I don’t care anymore.” I tossed my figure on the table and pushed my chair back. “Catch you later,” I said to Angela and Nick as I wheeled away. Nick painted the rest of my Father Christmas green and brought it to me later, but I didn’t go back to Arts and Crafts.

Another bad day that springs to mind is the day that I got so frustrated with the brain avm and the stroke and the way that everything had turned out that I threw my cane at the wall. I’d been practicing my walking, and nothing about it in particular was even going wrong. I’d just – had enough.

And, of course, there was the day that I left. I heard that a particular nurse was going to be representing the nursing staff at my discharge conference and for the first time since I was a toddler, I threw a screaming, crying tantrum. She had misrepresented me to a group of doctors during a case conference when I was there, and that amounted to throwing me under the bus, as far as I was concerned. I was not giving her the chance to do it again.

I’ve had twelve years since the brain AVM surgery and rehabilitation to reflect on whether my perception of her actions was correct. I’m convinced that if I could go back, I’d do the same thing – less emotionally, with more of an appeal to staffing pressures that the centre was under. But I’d stand by my conviction that the only way that woman was coming near my discharge meeting was if she read my other day nurse’s notes and was not allowed to comment on what she thought.

Sometimes stroke changes peoples’ personalities. The old, timid me would not have stood so firmly on this, to the point where when the centre said, “Nursing won’t be present at your discharge meeting, then,” I said, “That’s fine.”

It was quite a move toward me growing a spine.  It’s too bad it took a brain AVM and a stroke to get me there.

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Allow me to introduce someone important…

…myself. :)

After a lot of thinking, I’ve decided to start blogging under my real name. I feel like I need to put my name to my story as I’m telling it, and also that I need to “own” the opinions that I’m putting out there. I’ve been blogging under this pseudonym for nearly three months and it feels like it’s time to put a bit more of me into this blog.

I still have concerns about protecting people who could be affected by what I write, and have put a lot of thought into blogging with those concerns in mind. I will still change most names to protect privacy…but I’ll start noting when I’ve done that, and I’ll go back through the blog over the next while and note when I’ve done that. However, I’ll also back through the blog and change other things as well:

My sister’s name is Rachel, not “Karen”, and my father’s name is Joel. They pretty much put huge parts of their lives on hold from the phone call in Nanaimo until I came home for good from the Ottawa Rehabilitation Centre (Rehab Centre #2; Rehab Centre #1 is Penatanguishene General Hospital). My mother, Jean, died two years before all of this happened.

I am so grateful to my family for everything that they did to stand by me when I was recovering. I’m also grateful to Rachel’s then-boyfriend and now husband, Gavin, for the support that he gave to both her and to me; to all my friends (especially Kim, who sat with my family during the craniotomy and then convinced the nurses that she was my adopted sister so that she could come visit me right after)…for the people who visited me, and prayed for me…for my doctors (especially Dr. Katz, who I don’t think I ever did thank properly)…

And I’m grateful to all of you for reading. My name is Sarah Levis. It’s nice to meet you. :)

 

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Wheelchairs and Airline Travel

Let’s talk about physical disabilities and air travel.

“Up, Up and Away…”

I didn’t do any air travel when I was in my wheelchair, but I’ve traveled several times with my cane. Besides the fact that I’m slower going through the security scans (it takes me more time to put my cane through, take my shoes off, get myphysical disabilities computer out of my carry-on, get myself together again on the other side) I haven’t really encountered any difficulties beyond what someone with physical disabilities and a mobility aid might expect to experience: my gate has been changed at the last minute and no one’s told me, and one time I tried to get on at pre-boarding as instructed at the ticket counter, was told to to sit down and then was later told I should have gotten on at pre-boarding.

But the airlines were also more than willing to deal with those little errors by immediately offering me a ride on a cart to my correct gate, upgrading me, and just generally being pleasant and very nice to deal with. I really have no complaints.

Others with physical disabilities haven’t been so lucky.

“…taking his legs and dismantling them and giving them back broken.”

I had no idea that they dismantled wheelchairs to make room on flights.

http://www.kfor.com/news/local/kfor-airline-returns-mans-wheelchair-in-pieces-20110817,0,6355799.story

As long as my journey back to mobility was, I’ve never known what’s like to have to give up my walking aid to a stranger, knowing that they’re going to take it apart and trusting that they’re going to get it back to me in one piece. I imagine that if you fly a lot in a wheelchair, you learn to live with that reality, but I would think that there’s always got to be some anxiety behind it. We talked in the posts about disability sensitivity about how even having another person even touch or lean on a wheelchair can be anxiety-producing for its owner, because the chair really is a part of the owner’s personal space. Imagine being presented with that part of yourself in pieces at the end of a flight by people that you’d entrusted it to.

And apparently this happens more that we hear about, when in many cases it’s not necessary to break down the chair.

Before dismissing this story as a man being a “victim”, as one of the commenters did, just think about it. Think about feeling physically powerless for a few flight, on the understanding that you’ll get your power back when you land – and then you don’t.

Think about how it feels to be respected so little, that people hand your legs to you in pieces at the end of the flight and just say, “Sorry”.

Soon after returning home from Ottawa Rehabilitation Centre, I had to call the Ontario Disability Support Program. I don’t remember who I talked to. I’ve since had many, many positive dealings with them, through work and in my personal life. But I wasn’t used to dealing with government services at all that point; I was overwhelmed by my new circumstances and the new information being thrown at me. When I got off the phone, I started to cry.

“What’s wrong?” Dad asked.

“They made me feel disabled,” I sobbed.

Let’s do that to as few people as possible, and let’s start by treating people in wheelchairs with respect on the airlines.

 

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My Brain AVM Story: “Confront Me If I Don’t Ask For Help”

The title of this post is from a movie called “28 Days”. Sandra Bullock, sentenced to 28 days in an alcohol rehabilitation centre after causing a car accident at her sister’s wedding, is forced to wear a sign saying “Confront Me if I Don’t Ask for Help” on a sign around her neck as penance for breaking the rules. There were days after my brain AVM surgery and the stroke when I probably should have worn a similar sign.

I had a very hard time learning to ask for help after the stroke. And an even harder time learning to accept it.

“I’m Fine. Thank You, Though.”

The word “help” hadn’t come easily for me for a long time. I’d always been fairly private about my affairs, and I’d already lived on my own for a year in university before moving out to BC. I was used to making my own decisions and coming up with my own plans for handling my problems. However, after my brain AVM surgery and stroke, for a couple of years, I was much more dependent on people than I liked. I didn’t have a driver’s license anymore, and in my small town there was no public transportation, so I was basically reliant on my father or taxis for transportation. I got tired extremely quickly, and had trouble doing even the most basic things without assistance. We won’t even get into the limitations imposed on me when I used my wheelchair in public.

When I was recovered enough to move out on my own, I was close enough to town to walk when the weather was nice and the sidewalks were clear (in winter, snow and ice still sometimes make walking unsafe for me). However, even on good walking days, I usually take a cab if I’ve been shopping and have groceries to carry. I can carry a week’s worth of groceries in plastic bags with the handles over my wrist on my good arm, roll a 12-can case of pop up my body and carry it under my elbow on my weak arm, and still get into my apartment, but I can’t pull that off for any sort of distance; sometimes walking home is out of the question.

Watching me carry that many groceries even the short distance from the cab to my apartment building makes the cab drivers, who all know me by now, awfully nervous. So much so that some of them, while they respected my refusal of their offer to help for a while, don’t listen anymore; they’re up and grabbing my bags before I have a chance to object. (Note: There are *very* few people from whom I’ll put up with that sort of thing. There’s only one cab company in town and the drivers see me enough to know when I say, “I’m fine, I just need to get organized” as I drop three things on the ground, I’m probably just brave-facing it and bull-shitting them a bit…so some of them just stopped paying attention to me. It’s actually kind of refreshing when people are willing to call me on unreasonable behaviour in this way.)

“She *Can* be Taught!”

So…it’s taken me a long time to learn that asking for help, or accepting help when it’s offered, is not a sign of weakness or dependency. One of my friends brain avm   says, when I’ve gotten too  stubborn about doing things  “on my own”: “I *know* that  you’re fine doing it by  yourself. But won’t it be easier  if you just let me help?” I think  it’s to my credit that I snarl at  them a little less than I used to  after hearing that.

Nick (name changed) was actually the first  person who brought this issue  up with me. We’d both been  away from Ottawa Rehab Centre for the weekend for visits with family, and we’d both gone to the Chapters book store in the area. I talked about how I’d tried really hard to do as much as I could on my own, even though it was harder to reach the higher shelves in my wheelchair. Nick said had shrugged and said that he’d asked for help when he needed it, and had much more energy to enjoy the book and the time with his family.

Man, I hated it when Nick was right.

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My Brain AVM Story: Dark Humour

I mentioned elsewhere how my sense of humour is kind of dark. I come by that honestly, and it came in handy when I was in stroke rehabilitation, after my brain AVM surgery.

All names are changed in this entry.

Summer in Penatanguishene General Hospital

At PGH, I was the youngest person there by at least 30 years for all but 3 of the weeks that I spent there. No one had heard of a brain AVM; some residents had had a stroke, but most were recovering from hip and knee replacement surgeries. The only real contact I had with young people was when one of the nurses who was just a bit older than me took me on outings with her friends (wheelchair and all); we went to the movies, to her place to hang out with her friends, and even to see her husband play in his band. Dad came to take me home every weekend, but it was really nice to get out with young people. I wouldn’t have had much of a summer without Callie and the generosity of her family and friends.

Arts and Crafts in Ottawa Rehabilitation Centre

At ORC, the demographics were different. Many more people were closer to my age; Helene and Tracey were both younger than I was. Several people were getting physiotherapy and occupational therapy after vehicular accidents. Many people, some younger than I, were there to recover from stroke, brain injury, or other related neurological conditions. Again, no one had heard of a brain AVM.

A group of us ate meals in the cafeteria and hung out together when we could. One night we all got bored and decided that we’d go to the Arts and Craft session that was being run by volunteers. They were doing Christmas centrepieces that night, making us glue little bits of Christmas paraphernalia to a rolled-up scroll with a ribbon on it.

Angela (my best friend at Rehabilitation Centre #2) looked over at Nick halfway through. Nick was in his mid-thirties, and trying to regain use of his dominant arm. The rest of us had been diplomatically silent about the fact that he’d abandoned the instruction sheet and was just gluing tinsel and Christmas cut-outs and glitter randomly all over his centrepiece. But Angela’s stoke had made her pretty blunt.

“Nick,” she said. “That is God-awful. Seriously, what are you doing?”

“It’s horrendous, isn’t it?” said Nick, shaking green sparkles onto a line of glue. “I’m going to give it to my mother. And if she doesn’t put it out every year, I’m going to act all huffy and insulted that she didn’t put out the decoration that I made just for her in rehab.” He grinned widely.

“You’re a terrible son,” I said.

“Oh, most definitely. Someone pass the stickers, please.”

Cry or Scream

We found ways to make ORC fun, but by definition it wasn’t really a fun place. Some of the people were recovering from some pretty devastating stuff. None of it was joking material, but there were quite a few that joked anyway. Not all the time. But I saw that dark humour that I’d used (still use) to make some situations in my life easier to deal with.

There’s a beautiful sequence from the television show “M.A.S.H”., where Hawkeye explains that if it seems like he’s cracking a joke every time he opens his mouth, it’s because he’s trying to keep from screaming. That quote is never very far from my mind. I wonder how many people are actually doing this on a daily basis, whether they realize it or not.

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Encore Post: Grateful to Be Canadian

I know that it’s a little early to be re-posting material, but today is Canada Day, and this post seemed especially appropriate. I’ll be back on Monday with new material. Happy Canada Day, and have a great weekend!

—-

Thanks to dedicated staff in Canada’s health care system, I am both an AVM *and* a stroke survivor. I’m a very lucky person, to be where I am right now.

My AVM Story

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

Five months later, I’d been seen in the 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 AVM, and then a craniotomy. The surgery hadn’t gone as well as they’d hoped: A small segment of AVM could not be treated, and I’d had a stroke that had significantly compromised my left side. My treatment team was arranging in-patient rehabilitation at a facility 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.

Penetanguishene General Hospital 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. My family would not have been able to afford my 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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My Brain AVM Story: Grateful to be Canadian

Thanks to dedicated staff in Canada’s health care system, I am both a brain arteriovenous malformation (AVM) *and* a stroke survivor. I’m a very lucky person, to be where I am right now.

My Brain AVM Story

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.copyright FreeFoto.com

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. The surgery hadn’t gone as well as they’d hoped: A small segment of brain AVM could not be treated, and I’d had a stroke that had significantly compromised my left side. My treatment team was arranging in-patient rehabilitation at Penetanguishene General Hospital, a facility 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.

The rehabilitation hospital 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. 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.

Comments are closed

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