Tag Archives | stroke

Commence Operation “One-Handed Chef”

By on October 10, 2012 in Uncategorized

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!

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250th Post! My AVM Story: Wishes and Choices

By on September 28, 2012 in Administrative, General Disability, My AVM Story, Physical Disability

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)

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Check Me Out At abledis.com

By on August 17, 2012 in Abledis.com, Administrative, Arteriovenous Malformation (AVM), Awareness, Conditions, Stroke, Very Cool People

As part of the “12-12-12″ series over at http://abledis.com/, Marissa is covering arteriovenous malformation (AVM) this month.

It was an AVM that caused my first stroke, and I had my (much larger) stroke after the surgery for the AVM.

Check out what Marissa has written so far. She’s put a lot of effort into this, and she’s been awesome to talk to.

http://abledis.com/12-12-12/sarah-levis

 

 

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My AVM Story: Reflections on Having Kids Post-Stroke

By on August 14, 2012 in Arteriovenous Malformation (AVM), Conditions, Family Ties, General Disability, My AVM Story, Physical Disability, Stroke

strokeMy niece, Gillian, is celebrating her first birthday on August 20. I will be attending her birthday party next Sunday. I’ve been thinking a lot lately about how having the stroke changed (or didn’t change) my feelings about having kids

Gillian – A Force to be Reckoned With, And Not Yet a Year Old

stroke

Just learning to walk…

Gillian has got quite the personality for such a little girl. I saw her over the weekend, and she’s almost walking on her own – she doesn’t quite have the confidence to let go of Mommy or Daddy’s hand yet, but she’s so close to taking off by herself. She talks constantly (some of it is even words!), loves looking at her board books, and is a total ham for the camera. She’s got a big, broad, smile and a laugh that breaks my heart. She’s just precious.

Being a Post-Stroke Mom

Having kids isn’t out of the question for me. It would require a lot of planning. I take some medications (for the seizure disorder that I developed after the stroke) that aren’t safe for a developing fetus, so I’d need to be slowly switched off of the ones I currently take and onto ones that would be safe for the baby. I’d want to talk with my neurosurgeon about the possibility of another stroke.

stroke

Happy Gillian

I’d think that it would be remote at this point, but it’s always in the back of my mind that the post-surgery stroke didn’t happen at the AVM site. I’ve never been exactly sure why that stroke happened, actually.

And there’s the issue of my weak side caused by my stroke, of course. My sister has a friend who knew of a women who raised several babies using one hand – she apparently got so good at it that no one thought anything of it. I believe it, but I can’t imagine how difficult it must have been to figure out how to do.

Lots of “Mothering” Opportunities…

The logistics of having my children seem difficult to work out for me. Someone asked me recently if the prospect of that makes me sad. I guess on some level it does, a little bit. But I’ve been hedging on the idea of having children in adulthood since high school. It’s not that I don’t like children – I very much like them. When I was younger, I was frightened that I wouldn’t be a very good mother. As I’ve gotten older, I’ve just never had the sense that other women seem to experience, that having children is something that I need to do.

I look around me and I see all sorts of children in my circle of influence that need a strong female presence in their life, and I think, “I can be that for them if they need it…if they want it.”  And I don’t think that it’s a coincidence that in the job I had supporting youth with intellectual disabilities, I’d often slip and call them “my kids”. I know the importance of professional boundaries and can easily keep them, but in my heart I’m very attached to and protective of all the people I support, the young people included…even the ones who come to me with many supports already in place.

And when Gillian breaks into a smile when she sees me, it’s enough. I feel very fortunate just to be here after the surgery and stroke to be a part of her life, to be able to watch her grow and to be one of the women surrounding her with love and support.

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

By on June 28, 2012 in Uncategorized

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!  ;-)

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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 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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After My Stroke: My “Weak” Hand/Arm/Leg

By on June 25, 2012 in Uncategorized

Recovering From My Stroke: My “Weak” Left Side

stroke

Reading a post by Grace Carpenter over at “My Happy Stroke”, I was reminded by how much trouble I used to have with referring to my left side, the side affected by my stroke, as my “weak” side.

Trouble because it wasn’t just that my side had been made “weak” by my stroke. Right after my stroke, it had been been nearly paralysed, or so it had seemed to me. I remember doctors asking me to lift my leg from the bed, and only being able to lift both a couple of inches. The foot that had kept its strong arch and pointed toes from years of highland dancing and ballet classes lay shapeless despite my best efforts to make it do anything. And my left hand, when I tried to open my fingers, wanted to remain a clenched fist.

The Problem with “Weak”

As Grace points out, “weak” is a problematic descriptor when it’s used to captured the full spectrum of experience with a limb that’s affected by a stroke:

  1. Weakness – Weakness is part of it, yes. Twelve years after my stroke, my left leg is strong enough to support my weight only for very short periods (this is a relatively recent development) and my left arm isn’t strong enough to hold very much. I do heavy lifting with my right arm and use my left arm as a brace, for extra support.
  2. Spasticity – For a long time (years), my left arm and leg had a lot of what my physiotherapists called “tone”. My arm and leg shook sometimes, and my arm jumped when I was startled (I was fun in scary movies).
  3. Lack of Sensation – Once, when I fell, I broke the little finger on my left hand and didn’t realize it until I had an x-ray of my hand done to look into something else. I couldn’t feel it that I’d broken my finger.
  4. Lack of Proprioception – For a long time (years), if I closed my eyes and someone raised my left arm in the air, I wouldn’t be able to detect where it was. For all I knew, it could be just be a few inches from my side, or out at shoulder-level, or straight above my head.
  5. Neglect – I’m pretty good about not neglecting my left side now, but occasionally I’ll walk outside with my t-shirt hiked half up my left side, or I’ll not realize that my jacket has slipped off my left shoulder to my elbow. It used to happen much more than it does now, though.

I generally use the word “weak” to describe my left side, just because I haven’t come across an alternative that I like (well, on my less-than-good-days, I might say “bad”, but I don’t mean it.)

Grace is considering “gimpy” but there’s something that doesn’t sit quite right about that with me, either…but if it works for Grace, more power to her! :)

Anyway, if you watch the video at the end of Grace’s post, you can get an idea of how my left arm now moves. It looks as if we’ve got about the same amount of arm movement and control, but Grace definitely has more fine motor skills in her hand. I am not to the point where I can pick up cutlery with my hand; the more I try to move my fingers, the more they want to curl up into a fist.

I really like Grace’s blog. Go check it out: http://myhappystroke.blogspot.ca/

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“My Special Needs Child is Not a Burden on Society” – Love that Ellen Seidman!

By on June 10, 2012 in Uncategorized

I found a lovely post on Friday at http://www.lovethatmax.com, a blog by Ellen Seidman about life with her son Max. Max has cerebral palsy. He had a stroke just after he was born. I’m devouring Ellen Seidman’s blog, and it’s partly why I posted the blog that I did on Friday. That, and a discussion with Geoff that happened that same night. It had all got me thinking about things like equality, and opportunity, and contribution to society…and left me thoroughly muddled. Perhaps that’s why I didn’t sleep Thursday night.

(Geoff, if you’ll remember, is my Conservative Facebook friend with whom I argue politics. We’ve started to joke that if we agree on something, pigs must be flying somewhere. We did have a good discussion the other night, though, tempered by the influence of other Facebook friends much more intelligent than I am.)

Ellen Seidman has read this post and approved it. It was important to me that she did.

Burden to Society? Depends On How We Choose to View Max, Not His Ability Level. You Go, Ellen Seidman!

Ellen Seidman’s June 6 post, “My Child With Special Needs Is Not a Burden To Society”, talks about a perception that because Max’s needs are greater than those of some other children with disabilities, he’ll therefore make less of a contribution to society, and money to support him would be “better spent” on children with less severe disabilities who will make a “greater” contribution to society. A number of other parents commented that they’ve encountered the same attitudes about their children with disabilities. Ellen Seidman and the commenters got very emotional.

I can understand why. One of the things that’s annoyed me most as I’ve worked with people with disabilities is hearing from other people (sometimes in front of the person with whom I’ve been working, and sometimes from colleagues in the field) statements like:

  • “He’ll never do that. His disabilities are too severe.”
  • “She’ll never be able to do that. It’s too much for her to handle.”
  • “What’s the point of trying that? It’s too expensive/there’s not enough support/we need things that we don’t have .”
  • “That’d be too hard for her. We don’t want to set her up for failure.”

Usually, the comment on the tip of my tongue is, “Unless you’ve got a crystal ball that I don’t know about, you can’t see into the future to know what this person is and isn’t going to be able to do in life, and what contribution to society this person will make.”  I generally tone it down to,

  • “No one is ever going to know what he’s able to do, including him, if no one ever gives him a chance to try.”
  • “It’ll be a challenge, yes, but we’ll get a good plan together for her before we move forward with anything.”
  • “The point in trying is that he wants to try. It’s his dream; everyone has the right to a dream. Let’s assume that the resources are available and see how far we can get.”
  • “What’s the worst case scenario if she fails? She learns how to deal with failure. Everybody has to learn how to do that eventually.”

What Does “Contribution to Society” Have to Do With “Equality”?

So, last Thursday night, Geoff and Julie and I debated what “equality” meant when it came to people with disabilities. I got it down to “equal opportunity”, which thoroughly confused Geoff (and with good reason, as I was thinking of this graphic and substituting “equal” for “Fair” in my mind):

contribution to society

But I worked it out. I won’t go into the protracted train of thought that led there, especially after reading Ellen Seidman’s blog,  but it all became to me Friday when I was writing on tumblr:

“I’ve been thinking about this quote:  ”Fair isn’t everybody getting the same thing…fair is everyone getting what they need to succeed.”

But there’s an implication there that not everyone is equal. 

Maybe everyone is equal in that we’re all equally deserving of fair treatment?

Glad I worked that out…only took me all day…”

It’d be such a cool world if we could get it through our heads that everyone, regardless of ability level (or race, or gender, or sexual preference, or religion…you get the picture) is equally deserving of what they need to become what they consider successful (within limits, of course. I don’t think that society could in good conscience support people to become successful ax murderers).

But that’s not my point. I’m trying to say that even the people who look the least “successful” in society’s eyes still make a contribution to society in all sorts of ways and may be quite happy in life. So social support can’t be reserved for who has the potential to make the greatest contribution to society. If we’re truly all equal, we should truly be regarded as having limitless potential and the advantage of government systems that nurture it.

I’m looking forward to seeing how Max continues to contribute to society as he grows up. I hope that Ellen Seidman will keep blogging so that we can continue with her family on their journey. Do yourself a favour and go read the “My Child with Special Needs is Not a Burden to Society” post on Ellen Seidman’s blog: http://www.lovethatmax.com/2012/06/my-child-with-special-needs-is-not.html

What’s your greatest contribution to society?

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My Brain AVM: May 29, 2000 – Open-Brain Surgery!

By on May 29, 2012 in Uncategorized

I had two surgeries to fix my brain AVM. One was the open-brain surgery, of open-brain surgerycourse, but the first was an embolization. People who have had an angiogram or angiography will be familiar with embolization. The doctor fed a wire through the artery in my thigh, up through my body into my brain. He used an adhesive attached to the wire to reduce the size of the AVM. That’s a very simplistic explanation, but it’s the gist of what happened.

I have to comment on this, because I still think it’s amazing. I’d never had surgery before or anaesthesia before.  The anaesthesiologist asked me to count backwards from 100, and suddenly I wasn’t awake – and then I was. It seemed like I had just closed my eyes. I wouldn’t learn until later that the surgery had taken four hours.

“Can we get this started?” I said, annoyed.

“It’s done,” said a nurse that I didn’t recognize. “You’re in the recovery room.”

I was stunned.

Bring on the Open-Brain Surgery!

I don’t remember much of the weekend that followed. I do remember being so convinced one night that I heard my dog’s toenails on the floor in my room that I called the nurse to ask who had let her in (more a testament to the drugs they’d given me than anything else). She assured that there was no dog in the room…but my family’s mutterings during altered states of consciousness in hospitals is a whole other blog post.

I do remember the night before I went in for my open-brain surgery, just a couple of days later. I was still in the hospital. I sat with my family. I called my friends on the pay phone.  I took a shower, since I didn’t know when I’d next get one after the open-brain surgery. I made sure that my dad knew where my letters to everyone were, in case something went wrong with the open-brain surgery. I did sleep, surprisingly.

And early in the morning, twelve years ago today, I waved to my dad and my sister as the nurses wheeled me away on a stretcher for open-brain surgery.

There wasn’t much prep. They only had to shave a little bit of my long hair, which was really nice, because I’d been psyching myself up to lose all of it. I thought that they just automatically shaved your head for open-brain surgery. I’d later cut my hair short, but I was happy to keep it for the moment.  In the operating room, I talked briefly with my neurosurgeon, Dr. Tymianski. The anaesthestiologist had me count back from one-hundred, and suddenly I wasn’t awake -

- and then I was. And I was annoyed – because there was a tube down my throat and a piece of plastic over my tongue, and no one would move it. You can read about that here: http://www.girlwiththecane.com/finger-spelling/

Sometimes things don’t happen quite the way we think they will.  Dr. Tymianski and his surgical team weren’t able to totally fix all of the AVM during the open-brain surgery. A piece had to be left, which later sealed itself off and is no longer an issue. A bleed in an area not far from the AVM site a couple of days after the open-brain surgery caused the stroke that wiped out my left side and so drastically changed the course of my life.

But I knew the risks. Dr. Tymianski told me that there was a 10% chance that the open-brain surgery would cause irreparable damage, and a 15% that it would cause damage that we could repair. That meant there was a 75% chance that nothing bad would happen. And I’d gotten through my first stroke with no damage, but statistically, if I left the AVM alone, I was going to have at least one more. Who knew damage the next one might cause?

So I played the odds and I hit that 10% that no one wanted me to hit. As my father said, “You can’t expect someone to put a Mixmaster in your head for 14 hours and come out totally unaffected.”

But he also said, “Just because your life turns out differently than you expected, doesn’t mean that it has to turn out worse.” And he was right. :)

Let’s all toast to that today: Just because life turns out differently than you expected, doesn’t mean that it has to turn out worse.

More about the Toronto Western AVM Clinic: http://www.uhn.ca/Clinics_&_Services/clinics/vascular_malformation.asp

 

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Ballet with Disabilities (and Inclusion)…My Saturday Mornings

By on May 7, 2012 in Uncategorized

Recently, I got a ride home from an event with the woman who taught the adultballet with disabilities ballet class in town a few years back. It was a very small class. There were three of us, including me, and then the instructor, Kate. We met for forty-five minutes on Saturday mornings to do relatively simple barre exercises: pliés, and tendus, and frappés, and battements, and several other exercises that I’d forgotten from the ballet training of my pre-high school years. It was all very relaxed, with lots of laughing. There were moments where my right arm would stretch in second position at  the barre and for a brief, wonderful moment, I’d actually feel like a just a dancer again, and not someone giving everyone else a first-hand look into ballet with disabilities.

I gave up the classes when a friend became very ill and I needed to have Saturdays open in case there was an opportunity to travel to the city to visit him. I missed the classes, though. There was a tendu combination that I could never get, that haunted me. Sometimes, when I’d wait for rides outside my apartment building, I’d put my hand up against the wall and practice it. I kept watching Kate’s ballet school schedule to see if she was offering the class, but I never saw it.

So I was very happy to hear from her in the car that day that she actually does keep it running. She just doesn’t advertise it. The same two women come, and she invited me back. I’ve just finished my second week.

Sarah and Ballet with Disabilities

I really liked that class, and still do, because I’m not a person with disabilities when I’m in it. Kate demonstrates what we’re going to do, (“Because we’re her Alzheimer’s class,” my classmate Helen jokes. “It’s all brand new every week!”) and then leaves it up to me to modify the exercise if I have to, in whatever way I have to. Which is awesome, because:

  • My left foot only points very minimally
  • If I’m concentrating on moving my left side, I have *no* turn-out. I’m lucky if I can get my left foot back into proper position if I lift it off the floor
  • Sometimes I forget to move my left arm
  • Sometimes I have to face the barre and grab it with both hands to do some exercises, or I’ll fall over.

Nobody cares that when I do the exercises on my right side, my foot arches nicely and my arm is pretty and that when I do them on my left side…I’m just a mess.  Or that I can’t do a rise, or a grande plié.  And they giggled with me when, after a particular difficult combination, I said,

“I was saying all the instructions in my head along with you, but apparently my foot decided that I could do that all I wanted, but it was just going to sit there in the air.”

(That was was a *tad* worrying, by the way…it felt like my foot was so confused by what was being asked of it, that it just wasn’t even going to try to keep up, if that makes sense.)

But that’s not the point. The point is that at the beginning of my stroke rehabilitation process, I never would have dreamed that I could feel so comfortable in a highly physical environment like a ballet class. And it’s got nothing to do with my abilities – it’s got to do with the attitudes of the people around me.

True inclusion hasn’t got anything to do with ramps and elevators and accommodations of any sort – it has to do with attitudes.

Many of the “Blogging Against Disablism” posts make the same observation – click on the badge on my homepage to read the BADD 2012 posts.

And speaking of ballet with disabilities…it may not be classic ballet, but I dare you not to be amazed by these two young people…

http://spluch.blogspot.ca/2007/12/disabled-dancers-dazzling-ballet.html

P.S. If you’re going to be staying in the New York City area any time soon and you’re looking for a hotel with amazingly accessible rooms, check out the new “Best” on the “Accessibility Bests and Worsts” page…

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My Brain AVM Story: Living Post-Stroke – “The Little Ways”

By on April 18, 2012 in Uncategorized

I had a conversation recently with a woman who’d had to live one-handed for a while after post-strokea car accident (using her non-dominant hand, like I do), and who also lived with what she thought was a brain injury for quite some time (it turned out that her tendency to lose words or use the wrong word in a sentence was due to severe sleep apnea). It started me thinking about the little ways in which I’ve had to adjust my post-stroke life.

My Friends Tell Me I’m Just Getting Old, But…

Before the stroke, I didn’t use a calendar or daybook. I didn’t need them. I could keep track of my schedule and my appointments in my head. I could also remember phone numbers with without any difficulty.

Post-stroke, I can’t do either, and accepting that I now need to write everything down has been difficult. It’s interesting that while I’m generally accepting of how my abilities have changed post-stroke in just about every other sphere of my life, I sometimes “rebel” about the change in this one. I’ll then have to call and ask when an appointment time is, or even miss an appointment, and the embarrassment puts me on track with writing things down again.

Living Post-Stroke with One Hand

I’ve talked elsewhere about how I do most of what I need to do post-stroke with one hand, without even thinking about it now. There are a couple of things that required some creativity to get around:

  • Putting on my bra. Maybe I’ll demonstrate this (fully-clothed) on the You-Tube channel someday.
  • Wearing dress shoes. I generally wear Blundtstones boots, for ankle support, and I have to be careful with dress shoes because my left foot doesn’t sit well in them and I’ll walk right out of them. For my sister’s wedding, we secured my left foot in my shoe with some dressmaker’s elastic. I wear black ballet shoe-style slippers when I can get away with it.
  • Opening containers. I open often bags (like chip bags) with my right hand and my teeth, which is very undignified but effective. My medicines are in non-childproof containers to make them easier to open. I can open some jars, but sometimes I must ask for help.

I used to have a lot of trouble asking for help, and I still don’t really like to, but I’m not embarrassed when I do. I’ve got a good sense now of when I’m wasting a lot of time and energy and just ultimately frustrating myself trying do something that someone with two hands could easily do in under a under a moment. Last night I asked my brother-in-law to cut my steak for me. I’ve also been known to walk out into the lounge in my building and ask someone to open a jar for me.

All in all, I’m living a very functional, pain-free post-stroke life, and I’m very, very grateful for that. Things could definitely be a lot worse.

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