Forgetting May 29th – My Stroke Story

I wrote this when I was hosted at Medium, because when I moved there I lost the page on which I’d posted my stroke story…but I thought I’d post it here again anyway. Enjoy!

Content Note: Stroke and Stroke Recovery, Arteriovenous Malformation (AVM), Unexpected Medical Problems/Surgery/Hospitalization/Disability, Brain Surgery, Privilege

Cartoon of a woman on the phone saying, "I got kicked out of the hospital today...apparently "Stroke Patients Here" didn't mean what I thought it did!" Keyword: Stroke

Image Description: Cartoon of a woman on the phone saying, “I got kicked out of the hospital today…apparently “Stroke Patients Here” didn’t mean what I thought it did!”

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 I realized two things last week:

  • The page that had my story on it didn’t travel over from from my WordPress blog when I moved to Medium.
  • May 29th came and went, again.

So as much as I don’t like talking about myself, I figured that I’d better put something up here on Medium about who I am and how I came to be here.

The story actually starts on November 7, 1999, when I had a small hemorrhagic stroke in the middle of a job interview in Parksville, British Columbia. I didn’t realize at the time that I was having a stroke; I thought that the sudden, intense headache was due to a migraine. I wouldn’t learn until that night, when I’d gone to the hospital because my neck was hurting and I was concerned that I had meningitis, that there was blood in my cerebrospinal fluid.

That’s bad, apparently. Bad enough that the hospital called my father in Ontario and suggested that he fly out. By the time he got there the next day, I was in a hospital in Victoria, and I’d been diagnosed with an arteriovenous malformation (AVM) in my brain that had started to leak.

AVMs, according to the National Institute of Mental Health are “abnormal, snarled tangles of blood vessels that cause multiple irregular connections between the arteries and veins.” AVMs can occur anywhere in the body, but brain AVMs are particularly problematic; they “damage the brain and spinal cord by reducing the amount of oxygen reaching neurological tissues, bleeding into surrounding tissue (hemorrhage) that can cause stroke or brain damage.”

My AVM had been with me since birth, but no one had any idea it was there until it announced itself when I was 22; because I’d not had a reason to have any imaging on my head done until it bled, no one had seen it. It would need to be treated, which could be done with radiation, embolization (inserting a special glue into the AVM via a catheter through the arterial network), or craniotomy (open brain surgery), depending on the AVM’s size and position. I could get treatment in Vancouver or Toronto. I chose to go back to Ontario to be treated at the AVM Clinic at Toronto Western Hospital. After looking at my films, the surgical team determined that with a 4% (non-cumulative) chance of bleeding each year, my brain AVM would almost certainly bleed again, and might cause damage next time. Their recommendation was to try and reduce its size with an embolization, and to then remove it via craniotomy.

Which brings us to May 29, 2000. Seventeen years ago.

I remember the night after the embolization surgery, but the days after the craniotomy are fuzzy. I’ve captured some of my first memories in Finger Spelling.

I remember the seizure that accompanied the stroke, a couple of days after the craniotomy, but I don’t remember a moment where I woke up and thought, “I can’t move my left side.” It was more a gradual realization that this heaviness was real and not going away — the doctors were evaluating my level of paralysis, and physiotherapists were coming in and tossing my arm and leg around, and sometimes people would adjust my arm because I’d moved and it was pulling on my shoulder because it had stayed where it was…

I needed help to sit up in bed, and help to lie down.

I needed help to get dressed and undressed.

Walking was out of the question. While the team tried to stabilize my seizures with IV medications, I was bedridden; the few times nurses got me up to sit in a chair by the window, I was exhausted within minutes.

Because I was now forced to use my non-dominant arm and hand, everything I did was painfully slow and inelegant: brushing my hair and teeth, eating, writing (when it was vital for me to do it).

I was in the hospital five weeks, and then I went to an inpatient stroke rehabilitation hospital. The transfer there was so stressful that I spent most of the first day vomiting. I yelled at my night nurse to leave me alone, because I was never going to walk again. I don’t remember that; I was told later.

Seventeen Years Later

I used to remember November 7 and May 29 every year, but now they tend to slip by me, unnoticed. They’re two more days where I do what I do: go to work, feed my cats, work on my writing, watch Colbert (taped; I’m trying to go to bed earlier), fool around on Facebook…

Some people call the day they had their stroke their “re-birthday” but that’s never made much sense to me. Nothing about me died to be reborn the day I had my stroke except some brain cells. I guess in that way I’ve kind of rejected the recovery movement as well, because I see so many people waiting until they’re “better” to live again, instead of constructing a life that they want to live as they’re getting “better”.

Not that there’s nothing wrong with working to make your weak side as functional as possible after a stroke, especially now that we know that the window for regaining function is much bigger than previously thought — after all, I’m still seeing very small gains in my hand over a long-term basis. But imagine if I’d sat around and waited to be sure I’d gained as much as I could in my left hand before learning to do things with my right hand? I would not be:

  • Living independently — making my own (albeit simple, but that’s okay — simple meals can be nutritious) meals, doing my own laundry and grocery shopping, taking care of my cats, keeping track of my finances, doing simple housework (I do have someone help me with housework), managing my healthcare
  • Working part-time in the community and part-time as a self-employed individual.
  • Travelling on my own — as close as Toronto (4 hr bus ride), as far as Mississippi (5 hrs by plane with a stop in DC on the way over and Chicago on the way back) and out to BC and back again by plane. Further with people with me.
  • Educating myself — Finishing up my degree in Psychology, completing the Developmental Services Worker diploma on campus at Loyalist College, completing technical writing training by distance from Simon Fraser University
  • Advocating for myself and other disabled people as an internationally-known disability activist.

Life happens as recovery happens, so might as well get prepared as soon as possible.

Dealing with Challenges

I still definitely face challenges. I was very lucky in that not long after I felt able to work, I got a great part-time job in my field that I found enjoyable and fulfilling. But I lost the job after few years because of funding concerns. Work has been difficult to find with my disabilities, and always part-time and low-security. I started writing the Girl With the Cane blog during a particularly long stretch of unemployment.

I’m learning that as I approach middle age, I’m not as resilient as I once was. I fell last winter and fractured my kneecap and I’m still experiencing a lot of pain. Several months later, I still can’t walk nearly as much as I’ve been able to in the past, which is very frustrating; not being able to at least walk to and from town and work like I used to feels like a big blow to my independence. I ask for help with transportation much more than I used to. I had a major seizure last September after being seizure-free for a few years, so driving is a few years off even if I could afford a car.

Even after 17 years, asking for (and accepting) help doesn’t come easily, but I work at it.

Canadian and Privileged

Despite challenges, I feel lucky to live in Canada, where my medical treatment and rehabilitation didn’t put my family into major debt and where getting income support and help to pay for my medications as a disabled person who couldn’t work was relatively easy (compared to what I’ve heard it’s like in the US). These systems aren’t perfect and I’ve heard real horror stories, but I’ve been fortunate.

Privileged, even — I’m white, straight, cisgendered, and able to pay my bills, with affordable health care (including dental, medicine and eye exams) with the means to access it. My family is supportive and loving. I’ve only ever felt unsafe a very few times in my life.

I’m very fortunate, and I try to always remember this as I do what I can to make the world better for those that haven’t been as lucky as I have. Some days it doesn’t feel like I can do a whole lot, but sometimes you don’t need to do a whole lot to make a difference in someone’s life. So I do what I can and hope it’s enough.

I’m looking forward to forgetting May 29 next year. 🙂

 

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My AVM Story: Back to Physiotherapy

I thought that it was probably time to post an update on the chronic pain that I’ve been having in my left leg (my weak leg) since last January. After an MRI showed that there was nothing in my thigh that should be causing any pain, and my GP admitted that she was stumped, we decided to do what we probably just should have done in the first place: have a physiotherapist investigate, and maybe do another round of outpatient physiotherapy.

Bar track walk apparatus in physiotherapy room.

Image Description: Bar track walk unit in physiotherapy room.

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Back to Physiotherapy

There are a number of physiotherapists in my town, but physiotherapy through the hospital is covered under the province’s medical program. There’s a waiting list, of course, but my leg wasn’t really bothering me at the time, so being on a list wasn’t a hardship. My name came up about a month ago for a block of appointments, and I’ve now been to three sessions.

Some background: I still fall every now and then, especially in winter when snow and ice make the sidewalks difficult to navigate. Generally, I’m much more likely to fall when I’m tired because my toe tends to drop on my weak leg and I’m not as careful about making sure that I lift my leg enough that it clears the ground. When my toe catches the ground, I pitch forward, and when I can’t right myself in time, I fall. Other stroke survivors will know what I’m talking about.

I don’t think much about it when I fall because I usually don’t hurt myself, I’m able to get up without assistance, and I just continue on. The people around me are much more upset than I am.

In fact, until my new PT started talking to me about falling during my first session with her, I had totally forgotten that last year, at New Year’s, I slipped on an icy patch in Dad’s driveway and fell. By moving my muscles and figuring out what hurt, she was able to figure out that it was likely this fall that had damaged my leg and that was causing the muscles to be so irritated now. She gave me some exercises to do at home and said that we’d talk more on my next visit.

The exercises helped, and she assigned some more the next week. But she had some other physiotherapy goals in me.

Surprise! I Learned in Physiotherapy that I Need to Learn How to Walk.

She had me do what she called “squat walks” on a bar track walk unit (see picture), so that I could support myself using my right hand. She wanted me to have both legs slightly bent at all times. And she wanted me to walk putting my left foot on the ground heel-to-toe, not trying to bring it out-and-around to avoid catching my toe.

Heel-to-toe is how non-strokies walk, apparently.

She told me later that I had a death grip on the rail during that first walking session, because squat-walks involve putting much more weight on my weak side than I’m used to. Apparently I don’t put much weight on my left side, even after 15 years, because my brain still tells me that my left side is unstable and that I will fall, even though my left side can take much more weight than I believe.

So I can actually walk in a much more of a balanced way. I’ve just never tried to do so, because my brain’s been telling me that I’ll fall (not that I’m conscious of this; I just try something, feel waaaaay too off-balance and stop).

During our next session, she added having me walk backwards, toe-to-heel. *This* was hard. I’d get my heel back and my toe on the ground…and instead of being able to put my heel flat on the group, like my PT instructed, my heel would turn out, away from my body, and I couldn’t get it to turn back. This has gotten easier, but it reminds me of the time in my post-stroke Saturday morning ballet class when I raised my left foot to do the demonstrated barre combination…and it just sat there, raised.  It was like I’d overloaded the neural pathways to the point where even moving wasn’t an option anymore.

My PT and I have talked about how rehab right after a stroke is about getting people minimally functional again. The people at Penetanguishene General Hospital were happy that I got any function back in my weak arm at all. They weren’t disappointed that they couldn’t get my hand to lay flat in the (brief, in the grand scale of things) time that I was there.  I walked out of Ottawa Rehab Centre using a straight cane, and people had done as much balance work with me as they could in the (again, relatively brief) time I was there, but we didn’t work on the finer things that we’ve talked about in this run of physio:

  • How people move their hips when they walk
  • How wide people place their feet when they walk
  • How people do everything involved with walking without looking at their feet to make sure that they’re doing it properly

There’s much more to walking than we think, and my PT said to me, “Babies do it all naturally. But when you’re older, you need to learn it all.”

A Thought About Stroke and Recovery Time Limits

I’ve never really thought, despite what I’ve read over the years, that there’s a concrete time cap on recovering function after a stroke.  My PT has confirmed that the period is much longer than anyone has previously thought, and that’s good to know. I’m fine with myself any way that I am.  But it’s nice to know that 1) My body and brain are capable of more than I thought of and 2) There are things that I can do at home, once this run of physio ends, to keep seeing how far I can get. There are even rails on the walls in my apartment building to use.

And hopefully my leg won’t give me the trouble that it did last winter.

General Notes

Work has been very busy lately so I haven’t been able to be here as much as I’d like. But here are some things that are in the hopper:

A blog on the inquest into Connor “LB” Sparrowhawk’s death.It’s important to me that I do a really good job on this one, so I’m taking my time and trying to think what the best way is to to talk about my feelings on this. But it is forthcoming.

Internalized Ableism Sparked by a discussion with reader Shannon Barnes, I’m trying to put together my thoughts about how damaging it can be when people that society is encouraged to regard as role models when it comes to disability advocacy have ableist attitudes…especially ones that insist on airing these attitudes publicly.

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Happy Fourth Blogaversary to Me!

So wow! I’ve been doing this for four years. That’s one of the longer commitments I’ve made since the stroke. And considering that I really only started this blog to keep me busy during a particularly long period of unemployment…well, I’m going to celebrate hanging around for this long.

Image Description: Keyboard, mouse, and coffee mug (all white), plus a plant in a white pot, sit on a workstation light green wooden desktop. “I Love Blogging” is also written on the desktop; the “Love” is represented by a blue heart.

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Especially since I could have blogged about a lot of things, and I chose to blog about disability…I think that’s significant. There were things that I needed to say. I’d written about disability before, in a (now out-of-print) book of personal essays, and what was in the book was what I needed to say about stroke and disability and recovery at that point, about six years after my surgery and stroke. But at that point, although my volunteer and professional experience in the disability sector had made me very capable of speaking about discrimination against disabled people, I didn’t know that this discrimination was called ableism, and just how insidious it could be. I could tell you that being called “inspirational” made me uncomfortable, and why, but I couldn’t talk to you about inspiration porn. I could talk about how environments disable people when they’re not accessible, but I couldn’t talk about the differences between the medical and social models of disability.

And I knew only the very basics about autism.

And the government considers me “trained” – I have a Developmental Services Worker diploma, which is the certification that government prefers that front-line workers possess in order to work with intellectually disabled people.

It’s been through the research that I’ve done for blogging here, the conversations with other disabled people, their families, and their caregivers with whom I’ve developed (mostly online, but in some cases quite close) relationships, that I’ve learned that, even after 20 years combined years of volunteer and professional experience of working with people with disabilities, that I had a world to learn…and took my first steps toward becoming more aware of how much appalling/icky/brutal/infuriating/insidious/none of the above (insert your favourite adjective)/all of the above ableism there is the world, and of the ways ableism was present in my thoughts and words.

It’s been quite a ride, and I thank all of you for reading what I’ve writing, for educating me, and for passing on my work. Onward into Year 5!

Also…

I didn’t write a Stroke State of the Union Post on the anniversary of my surgery this year (May 29). I tried – a couple of times. But I couldn’t get it to stop reading like a list of “Here’s what I can do now and what’s still an issue.” I know that people kind of like to hear that, but it’s not really what I wanted to focus on this year, the 15th anniversary of my stroke. I couldn’t figure out really what I wanted to focus on. Maybe…just the couple of important things that I’ve learned this year.

I’ve talked before about how I have trouble asking for help when I need it, for the things that I really do need help with. I’ve spent a lot of therapy time on that, actually. This year, even though it was difficult, I asked for help…sometimes with small things, some bigger things, and once for something that was ongoing and quite significant.

And, shock of shocks, the world didn’t end!

People seemed happy to help, and I really tried hard to believe that 1) They would tell me if they didn’t want to help and 2) That it’s okay, really okay, to admit that I can’t do everything, that I’m worthy of help when I need it, and that it’s okay to ask.

Obviously there are some issues here, and I’ve been trying very hard to work on them. I’m not sure where they come from – perhaps that awareness will come later.

I’ve learned about this year about chronic pain and its effect on a person. Some people experience severe pain after a stroke. I did not. I’ve never experienced any sort of chronic pain. But this year, after New Year’s, my left thigh started to hurt.

I didn’t think anything of it for quite a while. My niece and I had spent a lot of her New Year’s visit playing…playing with Gillian always ends up including “Hide and Seek” and building forts out of couch cushions and a lot of her jumping on me, and I love every minute of it, and there was plenty of opportunity to bruise my leg somehow. I was also falling asleep far too much on my couch over the holidays, watching Netflix on my new TV, and I was convinced for a long time that my leg was sore because I’d just “slept on it wrong.”

But in February, when I was still having pain in my thigh getting up from a seated position, and walking when I tried, I visited the doctor. X-rays showed nothing, and in March, with the pain getting worse and worse, I was referred for an MRI.

In Canada you can wait a while for imaging if you’re not an emergency case. In April and May I frequently could barely walk, and then the pain let up a bit for the nicer weather in June. By the time I had the MRI done a couple of days ago, the pain had faded, and is now fairly easy to live with.

But it’s given me a whole dimension to the empathy I’d previously felt for people who are living with any sort of chronic pain. It’s difficult to get motivated to do anything when pain makes it difficult to walk. I generally do a lot of walking at this time of year, but that’s been difficult. Not knowing what’s going on has been more stressful than I thought it would be. And this is localized pain, very mild most days compared to what a lot of people live with. It’s been an eye-opener, thinking about how other people must cope with much worse…and so gracefully. I don’t know how they do it.

These are some of the thoughts that have gone through my head this year.

I am finding it difficult to wrap my head around the fact that it’s been 15 years since I had my stroke, and don’t know what to write beyond that. More on this later, likely.

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