My Brain AVM: Winter and Accessibility

We had snow in my area yesterday. There’s no dodging it anymore: Winter is on its way. Winter changed a lot for me after my brain AVM surgery and stroke.

Content Note: Ableism, accessibility, brain AVM, call-out, stroke, winter

Close-up on a large shovel full of snow.. It's held by a man in a beige jacket, navy gloves, and jeans. Keyword: Brain AVM

Image Description: Close-up on a large shovel full of snow.. It’s held by a man in a beige jacket, navy gloves, and jeans.

I’m one of those annoying Canadians who would be perfectly happy with sweater weather all year long. Heat’s a seizure trigger, so humid Ontario summers make me nervous and uncomfortable. I’m not especially bothered by the cold weather in winter, but I don’t like snow and ice, especially since my brain AVM and stroke.

Like, I really don’t like snow and ice.

Especially when it accumulates – on sidewalks, on stairs, on wheelchair ramps, in banks that I have to step over to get from my ride to the sidewalk. Sometimes it accumulates because it’s falling so fast and hard that there’s no point in trying to clear anything or make surfaces  safe for walking until there’s a break in the onslaught, and it’s on those days that I don’t go out unless it’s necessary, and do what I have to do quickly so that I can minimize time on slippery surfaces if I must be out.

I know that there are days when it’s almost impossible to keep surfaces clear, which is why I’m so impressed by businesses that try, and why I’m more likely to spend my money in them. But if I have to be Accessibility Bitch with a business about the snow/ice on its stairs/ramp that’s obviously been accumulating for a couple of days or more…especially if I have to do it repeatedly….rest assured that not only will I stop frequenting that establishment if at all possible, I’ll also let people know why I did so.

Here’s why:

I Won’t Go Where I’m Clearly Not Wanted

I’ve said this before a couple of times in my post-brain AVM surgery years, but I think it bears saying again: Not keeping stairs and ramps clear in winter whenever possible says to me that I should probably look for another way to get what I’m looking for; if you really cared about what I have to offer, you’d make sure that I can get into your building.  So maybe I look for another business that wants my money, another volunteer organization that wants my time and experience, or another community group that wants my input.

I know that you don’t intend to send that message, but that’s the message I get: That what I have to offer isn’t as good as what a non-disabled person does, and therefore not worth the effort it takes to keep your entrances free of  built-up ice and snow.

That used to make me a bit sad.  But now, frankly, I’m over it. I know my worth, and if you don’t, that’s your problem. But your short-sightedness puzzles me, particularly when business is involved.

My money is just as green as anyone’s, after all.

This Isn’t Just About Me

I am a young(ish), moderately disabled person, yes; I’m not the “norm”. I am, however, living in a community with a high population of older adults compared to the rest of the province (according to Census 2016.) I actually sit on a committee of older adults trying to make my community a place where people can age well, as someone interested in accessibility issues, and the ability to get around safely in winter is definitely a concern that most committee members share.

It’s also a concern for parents with kids in strollers, and people who for whatever reason are a little unsteady when walking, and people with no mobility issues at all who are just walking a bit too fast to get out of the cold.

Here are some things to think about:

  • A wheelchair ramp that’s got snow and ice built up on it is of no use to anyone. It’s better off blocked off, in fact, until the people in charge of the ramp can commit to keeping it a condition where it’s safe for people to use.
  • When snow and ice enter the equation, anyone can fall. I was nineteen, in the days before the brain AVM surgery and stroke, fairly healthy and wearing good boots with lots of tread when I took a bad step in a snowy parking lot in Kingston and fell flat on my back. Luckily, I walked away with just my dignity bruised.
  • I’m really not as militant as I sound. If I bring concerns about an accessibility issue to you and you demonstrate that you’re willing to listen to me and take me seriously, I’ll likely go away singing your praises.  And if I see evidence of action based on our discussion – you’re aces in my books. But having to come back over and over is annoying for both you and for me.

Bottom Line

I don’t like writing posts like this, damn it, but I’m still a bit unsteady even with my cane, especially in winter, and there are many people out there who much less steady than I am and wish that more people were saying this stuff.

So I’ll keep saying it.

Just take care of your snow and ice so that we can get into your buildings. It’s not that hard.

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My Brain AVM: Disability and Prayers

This week I’ve received a lovely gift: a prayer shawl from the church I attended when I was a child. It got me thinking about disability and prayers.

Content Note: Religion, “I’ll Pray for You”, Ableism, Accessibility, Politics, Social Attitudes toward Disability, Christianity, Mental Health, Parent Death

Close-up on a woman's hands and wrists, wearing a bracelet, holding an older man's hand (wearing a wrist watch.) Speech bubble from the left of the picture says, "I'll pray for you." Speech bubble from the right says, "...Sorry?" Keyword: disability and prayers

Image Description: Close-up on a woman’s hands and wrists, wearing a bracelet, holding an older man’s hand (wearing a wrist watch.) Speech bubble from the left of the picture says, “I’ll pray for you.” Speech bubble from the right says, “…Sorry?”

The shawls are a ministry of my childhood church. A group knits shawls for those in the congregation that need healing, the shawls are blessed and prayed over, and given away. My father received one several years ago when he was in the hospital a few years back. but the ministry hadn’t yet started when I was in the hospital after surgery for my brain AVM and stroke recovery. A dear friend asked last week if I’d ever gotten one, and I said, “No,” and one showed up at my door with this note:

This shawl was knitted by {name omitted} and blessed with prayers for your healing ~ Body, Mind and Spirit

***

The appearance of this gift was timely, because in a Facebook group to which I belong, made up mainly of disability advocates but also of people just generally interested in disability issues, disability and prayers also came up. a thread got a bit derailed the other night when a presumably well-meaning individual offered to pray for us all.

“No prayers, please,” responded one person.

Group member Belinda Downes, who educates people about facial differences,  asked the group moderator if she could explain why the offer would be problematic to many people in the group, and then went on to do so. I quote Belinda here, with her kind permission:

“Thanks for the offer to pray. I’m a Christian too…so may I respectfully explain why offering to pray ‘for us’ is not helpful? If this is not appropriate…please let me know.

1) I understand as a Christian that we are taught to pray at all times about all things, and to have compassion for others. It’s not so much the prayer that is the problem but the ‘compassion’.

2) Speaking for myself, when strangers who don’t know me offer to pray for my scarred face, I know they are praying for the wrong thing. The people offering to pray for me try to imagine what it what be like to be me, and their guess is always a very sad story about loss and loneliness, but personally I’m very happy and have many great long friendships.

3) Because of point two, when people offer to pray for me, I don’t hear kindness, I hear inappropriate judgement. I hear that people think my life is sad and wrong just because of the way I look. And because of that I have the same reaction that {name omitted} has.

4) My advice would be to pray for what you know about, not what you think you know. And God will lead you to really know that He wants you to know about. God Bless.”

I don’t feel like I can comment specifically on everything that Belinda has said, because I’m not a Christian anymore. I’m a happy agnostic –  I figure that there’s something out there bigger than me, and (most days) I don’t feel any real need to pin it down beyond that, for me or for anyone else. I’m happy to let people define it for themselves, as long as they’re not hurting others in the process.

But I do have thoughts on disability and prayers. Let’s talk a little bit about that, and then I’ll tell you about what in Belinda’s post I *can* comment on.

Disability and Prayers: Some Boring Background About Losing My Religion

I was Christian when I was growing up. I was a devout Christian all through my teen years, in fact. My family was Anglican, but my faith had more evangelical leanings – I’d prayed the salvation prayer, and I believed it, even if as a result my faith life mostly vacillated between feeling like I wasn’t a good enough Christian or scared of what would happen if I wasn’t a good enough Christian.

I noticed in my last year of high school that sometimes I didn’t feel like I could “buy into” what my faith was telling me anymore. I simply found it hard to believe that people around me who were doing amazing things to help other people were going to hell just because they weren’t Christian. I wondered why God would judge my gay friends so harshly, and expect me to as well. I didn’t know that I was taking my first little steps away from Christianity.

Sometimes, when I talk about to Christians now, they say, “Did you think about it this way, though? Like – ” and I stop them right there, because I didn’t decide to leave Christianity on a whim. It was a journey. There was a lot of discussion with a lot of people (Christians and non-Christians, of all ages and in all stages of their faith), a lot of crying, a lot of anger expressed that I didn’t even know that I had in me, and a lot of thinking about ideas that I didn’t even understand at the time. My mother said, “Try not to think about it too much.” I wanted to say to her, “How can I not think about it?” In some moments I was very sad, in others I was terrified, in others I was exhilarated…because in leaving one world, a new one was opening up to me, and it was full of possibilities.

Getting through all of that, to a place where I can comfortably, with peace, say, “I’m not a Christian anymore, but if you are, great. Tell me about it!” took about six years, and I did alongside  defining events of my adult life to date.

Losing my grip on my mental health, when I thought that struggle was over.

Losing my mother, when I thought I’d have her for decades longer.

Losing my ability to move my body to move my body the way I wanted, a possibility that I’d never considered. My brain AVM and stroke changed all that.

Losing the life that I’d planned for myself, fighting to gain any bit of it back that I could, with every bit of will that I could muster, and then learning to let it go and build a new life.

So my convictions on my spirituality have been tried and tested, and I’m quite happy and at peace with where I am (and hope the same is true for you, because it’s a nice feeling.)

Disability and Prayers: My Position

I’m afraid that I’m going to sound contradictory. But…

Despite the fact that I’m not a Christian anymore and that I haven’t been to my childhood church more than five times in the last twenty years, I love the prayer shawl that I received this week. I love the idea of something warm to wrap around me, imbued with the loving intentions and focus of others who know me and my family, even if they don’t see me around church anymore. I live in a small town; these people still see me.  Most of them saw me grow up, so they know that there were rough times long before the brain AVM and stroke, and they see that I’ve built a life for myself as a disabled person since the stroke.

I know that lots of people in my community were praying for me when I was in surgery, and afterward, when we weren’t sure what would happen, and as I was recovering, and I’ll always be grateful. And I still welcome the prayers for healing of mind, body and spirit from the people who made my shawl  because I know that I can use this loving focus of intention. After all, there are times when, for a variety of reasons, totally unrelated to my disability, my body, mind and spirit do feel wounded and raw and in need of healing.

I still miss my mother, twenty years after her death.

I’ve often feel helpless and sad for friends and family that are facing far too much grief and uncertainty.

My body isn’t as quick to recover when it’s injured. Pain in my knee and foot set my back significantly this summer.

I wonder what’s ahead for me and if I’m making the right choices for my life.

It’s nice to know that people are thinking of me and that they care, and I will think of that when I wear my prayer shawl on cold nights.

However, in general I feel the same was as Belinda about disability and prayers. When strangers or people who don’t know me well say they’ll pray for me, I feel like there’s an assumption that my weak leg and a weak arm must make my life difficult and unhappy. There are some things about my life that I’d change, but I manage quite well with my disabilities and I don’t give them a whole lot of thought – but, as I’ve written about before, I’m lucky enough to have landed in circumstances that mitigate the effects of constant, debilitating systemic ableism.

I can’t stop you from praying that my physical disabilities be healed, but it’s not what I need. Or even want, really.

Disability and Prayers: If You Want to Pray…

If I could have anything…I’d want a serious commitment from government at all levels (and the funding and resources to back it) that *all* Canadians have what they need to live safe and healthy lives in their community of choice, where they can contribute their talents and feel like their presence is valued and appreciated.

As far as that concerns disabled people, the federal government  is taking some steps with their efforts to create disability legislation similar to the US Americans with Disabilities Act.

But lawyer and  disability activist David Lepofsky declared back in 2015 that Ontario was unlikely to reach its goal of total accessibility by 2025 – bad news, because an accessible Ontario is good for everyone, not just disabled Ontarians.

I’d really like disability-friendly governments.

I need…

I need good snow removal on the sidewalks in town and on steps and ramps so that I don’t fall and hurt myself. I don’t need electric doors to work – I can manage – but, damn it, it’s nice, because I’ve got one arm/hand to work with and sometimes I’m carrying stuff in my hand and have bags on my arm and my cane hooked over my elbow…and other disabled people really do need them. I need people to take me seriously when I say, “This is an access issue.”

I need open minds and open hearts and people to keep talking and not making assumptions about me and my disabled friends – assumptions about what we can and can’t do, about what *you* can and can’t do (and about what you should and shouldn’t do), about what’s legal and illegal. We need people to talk *to* us, not around us or about us – especially when the talk is about things that will impact our lives.

My life’s practically an open book anyway since my brain AVM and stroke, but if I don’t want to answer, I’ll just say so. I’d rather you ask. Just keep it respectful. Respect and dignity. We all deserve that.

Disability and Prayers: Bottom Line

There’s a bit of a list of things I’d love you to pray for, if you want to pray for me:  Friendly governments, accessible spaces, open hearts and minds, respect and dignity. But if you’re still not sure – ask, don’t assume. Even on the days when I look like I’m miserable (and I know that I have them), it’s probably got very little to do with my weak side.

This one rambled a bit. Sorry. Thanks for reading.

Visit Belinda Downes’ Facebook Page – Coffee with Belinda Downes

 

 

 

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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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15 Years Post-Stroke: Thoughts on Neural Pathways

It’s that time of year again…the anniversary of my stroke didn’t breeze right by me – I thought of it on May 30, but it was a kind of, “Oh yeah, May 29.”

And it’s a big anniversary, too – 15 years.

15th Anniversary graphic. Keyword: Neural Pathways

Image Description: 15th anniversary graphic

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The Backwards Bicycle

I found this really interesting video last on the weekend done by engineer Destin Sandlin who had some welder friends of his make a bicycle where the front wheel went the opposite direction from the one in which the handle bars are pointed – a backwards bicycle. What he found was very interesting.

 

For those who don’t want to watch the eight minutes, you can’t ride a bike built like this without a great deal of practice. Destin practiced 5 minutes every day for 8 months before he could ride it.

Destin’s takeaway from all this is that 1) Welders are often smarter than engineers 2) Knowledge doesn’t equal understanding and 3) Truth is truth.  The video got me thinking, however, about stroke, and about how once neural pathways are set to do something one way, it takes a lot of practice to override those pathways and build new ones that let you do a task another way. If you’ve ever tried to learn to write with your non-dominant hand, you know this.

Children are better at tasks involving building competing neural pathways because their brains are very plastic  – it took Destin’s son 2 weeks of practice, 5 minutes a day, to learn to ride the backwards bike, as opposed to Destin’s 8 months, because childrens’ brains change much more easily, and much more quickly, than adult brains. This is also why, if you insist on having a stroke or doing some damage to your brain in some other way, it’s good to do so while you’re young – it’s easier for your brain to build new neural pathways to replace damaged ones.

My Stroke and Neural Pathways

Knowing that, I now know why so much of stroke rehabilitation involved repeating exercises over and over again (I think). It was about taking the parts of my body affected by the stroke and moving them properly over and over until a “path” of neurons developed that supported proper movement.  This link about neuroplasticity explains the process well

For some parts of my weak side, building new neural pathways has gone very well. There are no signs in my face that I’ve had a stroke. I walk with a limp, but I can walk quickly. My arm has good range of motion. However, there’s little fine motion in my foot and almost no fine motion in my hand – at best, I can wrap my fingers around handles on some car doors, but that’s no guarantee that I’ll have the strength in my hand to pull the handle out and open the door.

I was always told that I could expect recovery in my weak side up to 5 years after my stroke and not much after that, but I learned this year, when I did some physiotherapy after a fall, that 1) I still don’t put a whole lot of weight on my left leg, ever, because my brain thinks that I’ll fall if I do and 2) Walking slowly, with a lot of concentration on putting weight on my left leg, is “training” me to walk with much less of a limp. However, I’ve laid down some fairly strong post-stroke neural pathways in the last 15 years (as I’ve learned to get around as quickly as I can while staying upright) that keep that limp pretty stubborn. And as we saw in the video, even after you lay down a new neural pathway, it’s very easy to start to functioning according to the old one again if given the chance.

So the concentrated walking requires a lot of diligence, and in most days I’m in too much of a hurry to be practicing it all the time as I should. Same with my arm and hand. I could probably get more function back if I made a really concentrated effort to use my left arm and hand all the time, regardless of how long it takes to finish a task and how frustrating it is. But I’ve gotten really good at living one-handed, right-handed – I don’t even think about it anymore.I think that this is probably a good place to be 15 years post-stroke, but I guess there’s always a little voice that wonders, “Did I become too comfortable, too soon?”

But it’s not as if a one-handed, weak-legged life, or disabled life in general, is without challenges, even after 15 years. I’m not sure that life will be truly “comfortable” for a long time, maybe ever. But is anyone’s life every truly comfortable? I don’t know. Everyone’s got their challenges.

15 years post-stroke…

…it’s good to be here. No question about that.

I’m working “out there” approximately half-time, and as of recently I can walk to work and back from where I’m working. I’m writing the rest of the time – I wrote a book of personal essays in 2007 (now out of print) about disability and being a stroke survivor that drastically needs an update, and I’ve started doing that.

I’d like to get more involved with disability advocacy work in my own community.

I’ve not been here nearly often enough, and I need to change that. After all, it’s an election year in the US, and 2016 is making 2012 look uneventful. There’s a lot that needs to be said.

15 years. Day-to-day it’s sometimes felt like it’s moved impossibly slowly. But over the long run – so quickly. It’s amazing, really.

 

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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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My Brain AVM: Taking My Meds

October is Talk About Your Medications Month, and I’ve been thinking about medications…and my brain AVM and stroke…and being one-handed…and a bunch of stuff…

Medical personnel (the person is wearing blue scrubs and a stethoscope) of indeterminate gender, white, pours a variety of pills from a clear, amber bottle into his/her/their hand. Keyword: brain AVM

Image Description: Medical personnel (the person is wearing blue scrubs and a stethoscope) of indeterminate gender, white, pours a variety of pills from a clear, amber bottle into his/her/their hand.

I took an anti-depressant on and-off through my life before my brain-AVM and stroke, but nothing else consistently or long-term. Now that my brain AVM is gone, I feel like I keep a pharmacy in the house – I take two anti-seizure medications, morning and night, an anti-depressant at night, and Ritalin in the morning (plus vitamins, etc.)  Sometimes my pharmacy remembers to put my meds in bottles that I can open easily, but more often they’re in bottles with child-proof tops.

I tried to find a YouTube video of someone actually opening a child-proof pill bottle with one hand. I could only find one, and the person in it actually looks like they do it differently than I do. I grasp the bottle so it’s firmly in my hand, but so that my fingers are at the top to twist it, use my thumb and fingers the push the cap (and the bottle) down hard on a surface (I usually use my leg, but you could use a table) and then, still pushing down, turn the cap to open the bottle.

It’s easier to show you this, of course. The next time I have a visitor, I’ll get them to film me doing it, because after 14 years of doing this, it’s difficult to even explain how to do it.

Long Live the Blister Pack!

There are (arguably) easier ways to handle this, of course. You’ve likely seen Blister Packs, the cards with the ampules into which medicine is already poured, ready for you to punch out and take at the appropriate time. These are actually great, because they can allow people who otherwise might have trouble pouring their own meds to take them independently. An intellectually disabled person who might have had to live in group home or have had a staff person come in to a place where they otherwise live independently to administer medications each day can know by pictures on the card (like a sun, a moon, or a bed) which ampule to punch out when, and have that control.

Why don’t I use a Blister Pack? It’s never been recommended, and I’ve never felt the burning desire to ask, I guess. But I should remember to ask for meds in non-child-proof containers, because sometimes I get lazy and don’t put them on properly, and I have a cat that likes to knock pill bottles off counters when she wants attention. Neither of my cats have any interest in the contents of said pill bottles, luckily.

The other advantage of a Blister Pack is that you just have to look at to it know whether or not you’ve taken your meds. That sounds funny, because you’d think that you’d know…but these things get to be automatic, and when you live on your own and there’s no one around to confirm whether you did or not when you can’t remember because you’ve been on auto-pilot, it’s nice to know.

My Brain AVM, My Meds, and Random Stuff

Sometimes doctors ask whether my meds make me sleepy, because the anti-seizure meds tend to do that, and the dose for one of them is quite high. I can’t answer that anymore. I’ve always been sleepy, and I’ve forgotten whether it was different before the pills. Some days it feels like the past fourteen years have been a lifetime, and that I’ve forgotten what it was like before I knew I had a brain AVM.

When I first started working, sometimes I’d get doing something and forget to take my morning meds (which is okay for me to do every now and then, but definitely not a good habit to get into!) Now I set an alarm on my cell phone to remind me when I need to take them, because I’m kind of disorganized!

What are some tricks that you use to manage your medications? What about medication management is challenging for you?

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Practicing My Auntie Skills

I’m blogging from my sister’s house today. I’m visiting with her to help her get ready for Christmas.

A smiling woman in her mid-thirties with dark blonde hair pulled back in ponytail, wearing a sky-blue shirt, holds a baby cheek-to-cheek. The baby has its right hand on the woman's chin, and wears a brown sleeper with a white collar and cuffs. Keyword: Auntie
One of my favourite pictures of Rachel and Baby Gillian

Image Description: A smiling woman in her mid-thirties, Rachel, with dark blonde hair pulled back in ponytail and wearing a sky-blue shirt, holds a baby cheek-to-cheek. The baby, Gillian, has her right hand on Rachel’s chin, and wears a brown sleeper with a white collar and cuffs.

Practicing Being “Auntie Sarah”

Of course, this means that I get to spend some time with my adorable little niece, Gillian, and practice my “auntie” skills. She’s now almost four months old. She grows and changes so much that she’s practically a different baby every time I see her. Now she’s very strong: she holds her head up, and tries to roll over when she plays on her floor mat, and screws up her little face and tries to pull herself out of her ExerSaucer when she’s had enough of bouncing around in it. She looks around the room to find the source of new sounds, her blue eyes wide and alert. She loves looking at faces. When she’s in a good mood, she’ll smile and giggle when I make funny faces at her.

I could play with her for hours.

A woman in her mid-thirties, Sarah, with long, messy, dark blonde hair, parted in the middle, wearing a brown short-sleeved shirt, holds Baby Gillian, wearing a pink sleeper with brown circles on it, a brown-and-pink emblem over the heart, and brown cuffs. They are in front of a piano. Both are smiling, and Sarah wears glasses. Keyword: Auntie
Auntie Sarah and Gillian, First Thing in the Morning

Image Description: A woman in her mid-thirties, Sarah, with long, messy, dark blonde hair, parted in the middle, wearing a brown short-sleeved shirt, holds Baby Gillian, wearing a pink sleeper with brown circles on it, a brown-and-pink emblem over the heart, and brown cuffs. They are in front of a piano. Both are smiling, and Sarah wears glasses.

You Never Know What You Can Do                        Until You Try

However, it’s still felt strange, when I’m around her. I always feel like I’m the only adult who can’t pick her up  and soothe her when she cries. But today Rachel talked about how she often scoops Gillian up with one arm      while she has to carry something else, and speculated on how I should easily be able to do that given the strength   in my right arm. So I gave it a try. And I was thrilled to discover that, yes, I’m able to scoop Gillian up from a lying-down position using my right arm, bring her up to my shoulder, and even turn her around to have her lie over my arm (her favourite position, and Rachel’s favourite position as a baby as well, come to think of it).

I was over the moon. Rachel and Gavin were very        pleased. Even Gillian was happy, once I got her in her favourite position.

So, to date, I can change Gillian’s diaper with one hand, and also pick her up from a lying-down position. I also gave her an afternoon bottle.

I feel much more like an auntie.  It’s a very nice feeling. 🙂