My Brain AVM: Thoughts on Pain

I’ve talked before about how I have a lot of privilege, considering that I had a brain AVM that required surgical intervention and that I’m now disabled. Part of that privilege is that the whole journey came with very little physical pain.  I’ve had some reminders of that recently.


Vector illustration - red grunge stamp with "PAIN" written in white letters. Keyword: brain AVM

Image Description: Vector illustration – red grunge stamp with “PAIN” written in white letters

Content Note: Chronic pain, stroke, brain surgery, dental work, friend death, Hurricane Harvey, Hurricane Irma, Hurricane Maria, Puerto Rico hurricane damage, Las Vegas mass shooting

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I got a terrible headache when my brain AVM first leaked and caused a hemorrhagic stroke in the middle of a job interview. I know now that my pain tolerance is pretty high, because I not only finished the interview (and got the job), I walked to the doctor’s office and then walked home. I sometimes get migraines, and it’s not the pain that sends me to the hospital (even though the pain certainly isn’t pleasant)…it’s that my migraines make me throw up, and after a while I have to get a shot of Gravol to settle my stomach enough to let me keep my seizure medication down.

But, like most people, I don’t like pain, and I’m glad that I didn’t experience much of it with my brain AVM and stroke. I had some awful headaches after the surgery to treat my brain AVM, but who wouldn’t have headaches after having their head opened?

My friend Jason, who had a stroke when he was a bit older than me (not related to a brain AVM; he was in a car accident) wasn’t so lucky. His stroke came with central post-stroke pain. He didn’t talk about it much, but his mother once told me that he almost always had intense pain in his affected hand. I don’t know if I could have dealt with that and stayed as positive as I have through my recovery.

I’ve had periods since my stroke where I’ve dealt with chronic pain. Specifically, I’ve injured my weak leg a couple of times, badly enough that at times even a short walk to town was too painful to think about. But the pain ended with rest, elevation, and ice.

Mouth and teeth pain is a whole different ball game.

Pain That Won’t Be Ignored

At the beginning of September, my teeth were sore – all of them, it seemed. My head was aching. My ear, which had been hurting on-and-off all summer for no reason that any doctor could find, was aching. I was pretty sure that I knew what was wrong, but a trip to my dentist confirmed my suspicions that I’d been grinding my teeth again, and needed to started wearing my mouthguard to bed at night.

“Why haven’t you been wearing your mouthguard?” my dentist asked,

“Because I don’t like it,” I said, feeling (and probably sounding) like a mopey five-year-old.

“You need to wear it, or this will keep happening.”

So I did. And when the headaches and mouth pain didn’t go away, I figured that it was just because I’d made my muscles especially sore, and went about my business. Until one day, when it felt like the side of my face literally exploded – I didn’t know that teeth could hurt that much, and with my head pounding and the stabbing pain in my ear, my dentist got me in for a same-day appointment. He armed me with prescriptions for antibiotics to treat an infected tooth and Tylenol 3s for pain control, and I went home and cried on the couch while I waited for the pills to kick in.

I’m now two weeks after a root canal, perhaps looking at surgery to remove wisdom teeth that have just broken through after not moving for twenty years, and still apparently grinding my teeth somehow without knowing it, because my mouth and/or head/ear is always hurting to some degree. I have a muscle relaxant that I can take daily to deal with the muscle pain caused by the teeth grinding, and if I take ibuprofen throughout the day I can usually keep the pain reasonably at bay. But when I’m home I often have a cold can of pop held to my jawline on the right side of my face, because…numb is good.

And sometimes I still cry, because even with the muscle relaxant, and the ibuprofen, and the cold pop can, everything hurts. And I really didn’t realize until this round of mouth pain just how powerless it makes you feel, to be in a lot of pain and know that there’s nothing you can do about it.  It’s lonely. It’s exhausting. I can see why having to deal with severe chronic pain drains people and makes them depressed. I can see why it makes them desperate.

I’m looking at people who have to deal with chronic pain with new empathy, and I have a renewed sense of gratitude for the privilege of getting through this brain AVM journey relatively pain-free.

Jason died a few years back from complications related to other injuries he sustained during the car accident. I miss him, but I’m glad he’s not in pain anymore.

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Pardon me while I get a little political.

Friends in the US are having a very difficult time right now – hurricanes, health care uncertainty, and yesterday a horrific mass shooting in Las Vegas. I struggled to find what I wanted to say about it, and then decided to leave words far wiser than any I could come up with…

…and ask you to please consider doing what you can to support humanitarian efforts in Las Vegas and in areas of the US affected by the recent wave of hurricanes, especially Puerto Rico.

Here’s a list of links:

Support for Victims of Las Vegas Mass Shooting

Support for Puerto Rico – Hurricane Maria

Support for Florida, Louisiana, Puerto Rico, and Texas – Hurricane Harvey, Hurricane Irma, Hurricane Maria

Portlight – Portlight was created specifically to provide emergency aid during weather disasters to disabled people whose needs might otherwise cause them to fall through the cracks. Portlight is helping with relief efforts for all hurricanes.

More of My Writing About Disability and Emergency Preparedness

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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