Tag Archives | Penetanguishene General Hospital (PGH)

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.

Comments { 0 }

Commence Operation “One-Handed Chef”

So, I never was a really great cook, even before the stroke made it necessary for me to become a one-handed chefone-handed chef.

When I was much, much younger, I liked to bake. I used to bake cookies after dinner in my elementary school days, before the homework load got to be too heavy. But I moved away from cooking and baking as recreation in high school, and in university I ate like most students do: simply, cheaply, and quickly.

Coaxing the One-Handed Chef  Out of Me…

Most people start their journey to one-handed chef slowly after a stroke. In Penetanguishene Rehab Centre, my occupational therapist suggested that preparing chicken fajitas was pretty ambitious for my return to the kitchen and that perhaps I might want to start with a peanut butter and jelly sandwich. But I’ve always been kind of “no guts, no glory” with that sort of thing, so I pushed myself hard to make my favourite meal, got myself incredibly frustrated, and was too tired and sad to eat the damn things once they were done. My OT said that I had to eat them anyway, because it was a long time until dinner.

I’ve made them since. I’ve mastered the basics of being a one-handed chef. I’ve made eggs and toast. I make good salads. I made grilled cheese sandwiches for a boyfriend once, not realizing that there was something on the element, the burning of which set off the fire alarm first in my apartment then in my apartment building.  Some tenants still ask me when there’s a fire drill, grinning, if I “set this one off”. But the sandwiches were good, so I still count that as a success.

But I generally eat very simply – cereal, sandwiches, hard-boiled eggs, salads, the odd microwave dinner, yogurt, fruit, pasta with sauce and cheese. Apple slices and peanut butter are a favourite.  Occasionally I get more ambitious, but cooking is one area of living one-handed that I just haven’t mastered. Being a one-handed chef takes far more planning (and one-handed chopping takes far more practice) than I’ve felt capable of doing on a regular basis without becoming completely overwhelmed, on top of the challenges inherent in cooking for only one person.

However…I’d like to become a better one-handed chef. I’d like to have some recipes for good, healthy meals that are easy to prepare with one hand, and I’d like to improve my skills in the kitchen. It’d be great to be able to bring a dish that I’d prepared myself to a potluck, instead of just buying a dessert from the grocery store. It’d make me feel really good to do that.

Operation One-Handed Chef: The Plan

So I’m going to make a commitment and write it down here, so that I’m accountable to all of you: I’m going to make it a goal to try one new recipe a week, in my quest to become a one-handed chef. I’ve already gathered some recipes that look appropriate, and I’d love it if you’d contribute any that you find. I’ll put them up on a new section on the blog, and on the Facebook and Pinterest pages, and we’ll develop an archive for everyone everywhere who wants to become a one-handed chef.

Hopefully the recipes that I’ve gathered will keep me busy until Christmas, when maybe Santa will bring me a couple of cookbooks that I’ve had my eye on…

I’m going to start next week, and I’ll keep everyone updated on my progress. Anyone want to join me?? Let me know and I’ll send you the recipe I’ve chosen at the beginning of each week!

Comments are closed

250th Post! My AVM Story: Wishes and Choices

So, this is my 250th post! Do bloggers generally celebrate 250 posts? It seems worthy of celebration to me.wishes and dreams

And it seems like a long time since I’ve posted about anything positive. So I’m going to post an essay that I wrote, in 2006: “Wishes and Choices”. It’s about how I was feeling about my recovery process at the time.

“Wishes and Choices” is still true…mostly. I’m a less little naive now. I no longer believe that everything happens for a reason, but, to quote Tom Lehrer: “Life is like a sewer: What you get out of it depends on what you put into it.” I’m much more accutely aware now, however (not only because of my experiences but because of many, many discussions with others much smarter than I, not to mention hours and hours of having CNN on in the background in my apartment) that “stuck” isn’t always a state of mind, that “staying positive” isn’t as easy as everyone makes it sound, and that sometimes even working your hardest just isn’t enough…particularly for groups existing in a social system that’s stacked against them in multiple ways.

I’ve grown up a bit since I wrote “Wishes and Choices”. I hope I’m a bit wiser…and that my writing has improved at least a little bit!!

But my main impetus for writing “Wishes and Choices”. hasn’t changed. As hard as it’s been to get here since the stroke, I wouldn’t change what happened. It got me here, to my 250th post, didn’t it?

And I like being here. :) Thank you all for being here with me.

(Oh, if I ever reprint “Wishes and Choices” anywhere else, I’ll find some way to say what I want to say without using “inner voice”.  A promise to an editor friend.)

Wishes and Choices

I’ve always believed that things happen for a reason. Even “bad” things.

So, one day at Penetanguishene Rehabilitation Hospital, I declared to the social worker that if I had to do everything over again, I wouldn’t change a thing. I’d have the surgery, definitely. I’d have the stroke. Definitely.

Well, that’s more written on stone on some days than others.

Some days I can’t help thinking that it would be nice to have three wishes to put towards restoring my health. Or even one wish.

I’d have to phrase my one wish very carefully.

Should I wish to be healthy again? All things considered, I am fairly healthy. The arteriovenous malformation is no longer a problem. My seizures are more a nuisance than a health risk. Despite my weak left side, I’m actually more physically fit than I was before the stroke.

Should I wish not to have a weak left side? That still leaves me with a seizure disorder, which makes me unable to drive.  Losing that freedom has affected me, in many ways, more than the weak side. Not being able to drive is a huge hassle, especially living in a rural area.

Should I wish that I hadn’t had the surgery? That would leave me with an AVM in my head, making me a ticking time bomb. I would have almost certainly had at least one other bleed, possibly causing the same neurological damage as the post-surgery stroke did.

I should maybe wish that there had been no complications after the surgery. That would be the wish, I think…no stroke to cause a weak left side, no scar tissue to cause the seizure disorder. Brain surgery seems scary, but is more routine than people think. When it goes well (which is most of the time) people aren’t even in the hospital all that long. With a routine surgery, I could have gone home in a week or so, recovered for another three, possibly been back to work by July. Life would have gone on.

But.

Would I have met some of the strongest, gentlest, funniest, most loving, resilient, intelligent, determined and courageous people I could ever imagine?

Would I have the immense respect that I now do I for nurses (and the medical system in general), co-existing with the knowledge that sometimes I must speak with a firm voice and gently insist that I be listened to if I’m to receive the best that it has to offer?

Would I know how fun it is to run over bubble wrap in a wheelchair, or that you can tow at least two manual wheelchairs (with people in them) behind an electric one?

Would I appreciate how hard life can be for people with disabilities to live in a society in which it can be very difficult to manuouevre, both physically and emotionally?

Would I know in my bones that more people care about me than I can count, and finally be able to see how immersed in love I really am?

“Stay positive.” “Work hard for what you want.” “It’s what’s inside that counts.” Would these cliches have become part of my life philosophy?

Would I know how and when to ask for help, and feel comfortable doing so?

Would I know that just because life turns out differently than you expected doesn’t mean that it’s necessarily going to be worse?

Perhaps I would have learned all these things somehow if I hadn’t have had the stroke. Perhaps these were lessons I needed to learn, and acquiring a weak left side was just one way of getting there. Perhaps if the surgery had gone absolutely according to plan, I’d still be right here at age 29, writing a touchy-feely and somewhat vague reflection on how one wish could change my life.

Since I’ll never know whether different life circumstances would have taught me what I know now, brought me to this place where I am…perhaps I’ll just leave it at this:

I don’t need a wish. I have too many choices to fill my head with wishes.

I choose to hope.

I choose to find new ways of looking at the world.

I choose to be open to the connectedness between us all, to heal and be healed.

I choose to passionately pursue the things that give my life meaning.

I choose to celebrate the victories.

I choose to relax into my failings, and to try again.

I choose to stop, rest, and listen patiently and compassionately to my inner voice.

I choose to stop trying to control everything.

I choose to believe that “stuck” is just a state of mind.

I choose to not to let people handicap me.

I choose to let myself feel what I need to, when I need to feel it, and to ask for help when things get too hard.

I choose to let my mind and spirit run fast and free.

I believe…and I insist…that I don’t need a fully functional body to do any of these things.

I don’t wish. I choose.

Have a great weekend. You’re all awesome. :)

(Oh!  I’ve got a new web presence…check me out here: http://topfemaleexecutives.com/Sarah-Levis)

Comments are closed

My Brain AVM Story: Michael

This is another essay from my book “Run, Run Because You Can”. It’s a little long, but it’s a reader favourite. I hope that you enjoy it.

Michael

Some people that I met during in-patient rehabilitation were part of  my  post-stroke life for only a very brief time, but impacted me greatly. Michael was one of them.  He came to Penetanguishene General about six weeks into my stay. He’d also had a stroke that had affected his dominant side.

Michael was in his sixties. I didn’t hear him speak for several days after he arrived.  His wife was with him whenever possible, and for the first couple of days I mistook his quiet for terror.  He actually couldn’t speak, as his stroke had severely affected his speech as well as his mobility. I was again reminded to count my blessings.

Due to the nature of Michael’s stroke, his recovery process moved much faster than mine. However, it also worked in his favour that he worked even harder at rehabilitation than I did (andbrain avm I was working pretty damn hard). He had the best attitude that I saw in anyone, in all my time in rehabilitation. Before long, he could give one-word responses to questions such as “How are you?” (to which he always gave an emphatic “Excellent!”). He was soon talking in short, halting sentences when his wife came to the hospital to have dinner with him. He did his physiotherapy and occupational therapy exercises diligently and without complaint. When the physiotherapists gave him the “okay” to walk short distances with a cane, he would practice even after daily therapy hours were over, until the nurses would make him stop. His determination renewed mine, and made me want to work even harder than I was.

Kindred Spirits

Sometimes we were in the Occupational Therapy room at the same time.  He did worksheets while I did my arm exercises. One day, another patient was complaining that Jim, one of the physiotherapists, was in a terrible mood. I was struck (not for the first time) that someone was always complaining about something on that floor, and I tried to hide my annoyance.

“He’s probably just having a rough morning,” I sighed as I did a set of reps with the eight-pound weights, using my right wrist. Part of my therapy was to strengthen my right arm in preparation for making it my dominant arm. Being able to lift eight pounds with your wrist is pretty good. Normally, I’d have been very proud to be able to do that. However, it just didn’t seem very impressive that morning.

brain avm“Jim’s. Hung. Over.” said Michael, and winked at me.  Due to his speech difficulties, when he spoke, he had to pause between each word for a short period. That time it didn’t even register; the words were so unexpected and yet so perfectly timed that I’d started to giggle before I could stop myself.

Once I started giggling, I couldn’t stop.  The morning suddenly looked a little less gloomy. Ellen, the occupational therapist, looked over at me to see what so funny, but I couldn’t explain myself, and I didn’t really feel like it anyway. When I looked over at Michael, he was grinning, and I thought, I like this guy.

Another time, as I laboured to stack cups using my left hand, Michael started looking to me for help with his memory worksheet. He was stuck on a grammar exercise.  Thinking back to how difficult it was for him to retrieve words, and how he sometimes got different elements of speech mixed up, I am so grateful that most of the machinery for that sort of thing is on the opposite side of my head from where I bled.

“Take. This….” he read from the sheet. He was to supply a noun.

“Take this…” I wrinkled up my face, hoping that maybe if I thought hard enough, my hand would work and I could stack the plastic cups effortlessly.

“Take. This. And. Shove. It.” said Michael.

I nodded. He’d pretty much summed it up. I suddenly felt a kinship with Michael, perhaps just based on a mutual frustration (and perhaps boredom) with occupational therapy exercises, but a kinship nonetheless. A little while later, during our one, real conversation, I realized that there was perhaps a deeper bond of understanding behind it.

“I. Love. My. Life.

We were both sitting on the porch between physiotherapy sessions. The other people with whom we’d been talking had gone back inside. We were sitting out in our wheelchairs in comfortable silence, enjoying the sunny day. PGH was a nice hospital, on a scenic piece of property. I could almost believe that I was out in the country when I looked off the porch at the surrounding trees.

At length, I started asking Michael about his life outside the hospital. He talked, in his slow, halting speech, about his wife (who still came daily to have dinner with him), his children, and his grandchildren. He talked about how worked in a bank for most of his career, and about how much he now enjoyed doing things outside now that he was retired from his job. He particularly enjoyed snowmobiling.

After a while, he became silent. He stopped looking at me and appeared to be biting his lip.  It took me a moment to realize that he was trying not to cry. I suddenly felt very, very badly. I’d only been trying to make conversation, but obviously I’d hit a nerve. I knew which one was it was, too. When hit it the right way, it was a sharp, stinging reminder that just a little bit of blood where it shouldn’t be could turn your world upside down and change it forever.

“I. Love. My. Life.” he said softly.  “I. Love. My. Life.”

Yes, I said to myself, looking at my hands.

He quickly turned his wheelchair away from the railing and started to roll towards the door. Halfway there, he broke down and started to sob.

My heart was breaking. I rolled toward him in my chair, absolutely clueless as to what I was going to say or do, but feeling like I needed to do something to let him know that I understood. I had my hand reached out to put it on his shoulder, but as I got close to him, he grabbed my hand and brain avmsqueezed like he was never going to let go.

In that instant, I felt as if I’d found my rehab soulmate. I felt like someone understood how hard it was to get up every day and be positive, work very hard and just be generally “excellent” when there seems to little to feel good about.

One of the hardest parts of rehabilitation was that I just didn’t know what was going to happen. I had to go put as much into process as I could, with no guarantee of how much of my old life I was going to get back. It was exhausting and terrifying…and up until that moment, I’d been feeling very alone in those feelings, despite being surrounded by support.

All this passed through my mind in an instant, as did the sudden certainty that I was not alone in these uncomfortable feelings. To know this so deeply brought tears to my own eyes.

Michael only held my hand a couple of seconds, and said nothing. He then let go, wiped his eyes, and wheeled towards the door to go in for lunch. I might have met up with him a couple more times in occupational therapy after that, but we never spoke of that day on that porch, and it wasn’t long before he was walking out of the hospital with his wife for good.

Sometimes, when I see people snowmobiling, I wonder if he’s out on the trails. I like to think that he is.

 

Comments are closed

My AVM Story: Winter and Stroke-Brain

I came home from rehab for good in Christmas of 2000. The winter was a long one of stroke-brainreally not going much of anywhere except for physiotherapy a couple of times a week, walking in the high school in the early mornings, and the odd outing out of town for a movie with Dad. I was doing some correspondence courses to keep busy, and it didn’t do much to wear me out anyway. But one afternoon cabin fever set in, and my stroke-brain pushed me outside.

Blame it on Stroke-Brain

I believe I’ve talked before about how stroke survivors are prone to making bad decisions about what they can and can’t do with their new bodily capabilities.  I call that stroke-brain. Stroke-brain doesn’t always give people accurate messages about their bodies. A woman in Penatanguishene rehab that had a room across the hall from mine was constantly trying to stand up from her wheelchair and put things up on shelves or straighten a picture. I was much more stable on my feet than she was, and I was forever trying to get her to stay put in her wheelchair and let me do whatever she was trying to do before she fell and broke a hip. Her stroke-brain just didn’t let her  understand that she didn’t have the balance or the strength in her left leg to stand without support. Who knows, maybe my stroke-brain was giving me the wrong messages too.

The Great River Expedition

One day in those first months back from rehab, my stroke-brain told me that I had the balance and and strength to go for an early spring walk down to the river via the cleared area next to our house.  That involved navigating snow banks, deep snow, fallen trees, and eventually a brief path through the forest. I fell several times, which made me even more determined to get to the river.

I got there and back without doing grievous harm to myself, thankfully. I thought that my father would be pleased that I could actually manage terrain that difficult.

He wasn’t. As I remember it, I ended up promising that 1) I’d take the cell phone with me every time I went outside 2) I wouldn’t try to go down to the river alone again.

I’d known that The Great River Expedition was dicey. I hadn’t realized at the time that it was actually dangerous. I do now. Now I think it was one of those times when my stroke-brain thought that my body was capable of more than it actually was, and I’m really grateful that I didn’t end up hurting myself.

Learning As I Go

Learning the limits of my new body was a learning process. I can generally tell now when something’s going to be risky, given that my balance isn’t great, and I stay away from them.

I do admit to standing on a chair to change a lightbulb, which is something I (and probably  most people, when you get right down to it) shouldn’t do.

I never claimed to be perfect.

 

Comments are closed

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. :)

 

Comments are closed

My Brain AVM Story: Now We’re Cooking!

I’ve never been great cook. I was an even worse cook after my brain AVM surgery and stroke, when I only had one hand to work with.

One of These Things is Not Like the Others…

My mother was a great cook and a great baker. My sister Rachel has learned to make most of her recipes and does a lovely job of it. My father caught on to cooking for himself quite quickly after my mother’s death, and can prepare anything he needs to, from a can of soup to a pot roast to a roast goose for the Christmas holidays.

And then there’s me. Even before my stroke, my idea of preparing for a dinner party was to ask the guests, “What do you like on your pizza?” But I could feed myself, as long as I kept it simple and didn’t stray too far from typical student fare.  My best dish was chicken fajitas; and when  Kate, my occupational therapist, broke it to me in Penatanguishene Rehabilitation Centre that the time had come for me try preparing my own lunch, I told that it was chicken fajitas that I wanted to make.

An Ambitious Choice

I always was an overachiever. It didn’t even put me off when Kate told me that most people chose to make something easier, like a sandwich. I don’t think that I was thinking, “Go big or go home”. I think I just didn’t realize how difficult it was going to be to, one-handed:

brain avm

Should have kept it simple…was thinking “Go big or go home”; I really think that I didn’t have a clue just how difficult it was going to be with one hand, even with adapted cutting boards and utensils, to:

  • Chop vegetables
  • Chop and cook chicken
  • Shred cheese
  • Get everything arranged so that it was where it needed to be, when I needed it to be there.
  • Time the meal so that nothing ended up getting cold while I was preparing other things.
I started an hour before lunch…and worked right through lunch. Everyone was done by the time I got the dining room. I was exhausted, and I didn’t even feel like eating.  One of the two other young people who passed through the Centre while I was there happened to be there that week; we didn’t like each other, for a number of reasons. She walked through the dining room as I sat there staring at the fajitas that had taken every ounce of my energy to make, and said what was probably the only sincere thing she said to me the entire time she was there: “That looks really good.”
I burst into tears.
“What did I say?” she demanded.  ”What did I say?” she said to Kate, who had just walked in the room.
“She’s tired and she needs to eat her lunch,” Kate said. “Right, dear? Eat your lunch.”
Fuck my lunch, I thought. I don’t want to do this if it’s always going to be this hard. 

Still Eating

Like everything, food prep got easier.  Like I said, adapted cutting boards and cutlery (knives especially) are available to help with cutting things. I usually just buy veggies pre-cut, though. as it still takes me so long to cut things, and the adapted boards just don’t stabilize some things very well.  I still basically eat like a student: easy meals, cereal, sandwiches, some microwave meals. Every now and then I get ambitious and try something new and a little more complicated.
I do need to own that I’ve fallen down in this area of occupational therapy, though. If I just practiced cutting veggies more, I’d likely get better at it fairly quickly.  But making complicated meals was never a priority before, so it’s not likely to become a priority now.
I don’t make chicken fajitas very often anymore. But I have, since that day in PGH. They were really good, they only took 45 minutes, and I didn’t cry. It was a good day.
Excuse me; I’m kind of hungry. I think I’ll go make a sandwich.

 

 

Comments are closed

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.

Comments are closed

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.

 

Comments are closed

Stop Copying Plugin made by VLC Media Player