I’ve finally got the timing right on my annual “My Brain AVM: State of the Union” post! I usually start it far too early, and then I forget about it, and then it’s late…

Image description: Diagram of a hemorrhagic stroke

Content Note: Stroke, chronic pain, seizures, asking for help, surgery

Some years, May 29 just quietly passes, and if I don’t realize until June that another year has passed since the surgery for my brain AVM and the stroke I had afterward.  Lots of stroke survivors get very focused on their “re-birthday” (which technically isn’t May 29th for me, but I tend to think of my stroke occurring on that day because I’m not exactly how how many days after the surgery it did happen…that period is pretty fuzzy for me) but I’ve never really been that hung up on it. As I’ve said to many people, nothing about me died to be “reborn” that day except some neural pathways that I’ve obviously managed to get along without  (for the most part) for the last 18 years.

But I do think it’s constructive to reflect to sit back and reflect this time of year on where I was this time a year ago. So here’s where I am, 18 years after my stroke.

Not Much Walking Going On

It’s not been a really great year, mobility-wise. I did something to my knee late last spring and landed myself in physiotherapy for the summer, relying on the kindness of a co-worker to help me get to work in the mornings. I had a few months before snow and ice made walking safely to work hit-and-miss each morning, and then my back injury kicked in. I’ve recently felt well enough to   walk to town a couple of times a week, but it takes me twice as long as it used to!

My back doesn’t hurt a fraction as much as it did, but it still hurts, and the experience of having pain that’s always *there* to some extent has made me do a lot of thinking about chronic pain. Like disability, it seems to be something that people don’t do a lot of thinking about until it actually affects them, myself included. I’ve always known that I’ve had privilege when it comes to pain, but I never knew how much that privilege blinded me to realities that so many of my friends face everyday.  It’s another layer of learning to this brain AVM experience.

I’m Free!

It took me 18.5 years, but I’ve been discharged from all the clinics at the Toronto Western Hospital (where I had my brain AVM surgery) that were monitoring me. My epilepsy specialist at the Western decided that the neurologist in Peterborough that I see about my sleep disorder (idiopathic hypersomulence – finally got a diagnosis this year) could also monitor my epilepsy medications.

I am more than happy to be done with Toronto Western and to be down to one monitoring appointing a year, but it sucks that my seizures are still  an ongoing issue. I had to start to take more of one of my meds this year because of focal seizures, which are new for me, as far as I know. I say that because, unlike the seizures I typically have, I don’t have any memory of these new ones – when I come out of them, the most confusing part of the whole thing is why people are asking me if I’m okay.  Since I live alone and don’t have anyone to tell me, “Hey, you were really zoned out just there, did you have a seizure?”, perhaps they happen more often than I think they do.

Aging and Help – Thinking About the Future

I think about stuff like this more and more as I get older, and as it becomes more and apparent to my fiercely “I can do it, I don’t NEED help!” self that as my body starts to injure more easily (with a longer recovery time) and my brain says, “Okay, you’re recovered enough,” that maybe I do need help sometimes…and that I need to assume that some day I’ll need more. Given that I do go through periods where seizures are more frequent, I probably should have asked the local home support agency to start doing  a safety check at least every other day a long time ago, to make sure I haven’t fallen and hurt myself…but something’s always kept me from doing it.

I’ve never been good at asking for help.  I’m getting better at it, but it’s a theme of this brain AVM journey that comes up over, and over, and over. I tell other disabled people all the time that it’s okay to ask for help, but it’s taken me forever to start to believe that for myself.

I need to examine why I hold one set of attitudes about disability for other people that I won’t apply to my own life. I don’t do this about everything. But as I’ve said elsewhere, there are obviously still things I need to work out, even after all this time. I learned a lot about myself this year.

Work, Work, Work…

I still work short shifts 3-4 days a week. More hours would be nice, but I don’t know that I could handle full-time…the weeks when we are very busy at work, when I’m there every day and sometimes get half-time hours, leave me very, very tired by the weekend.

Even after 18 years, I think I still underestimate the effects of the stroke and my seizure meds on my fatigue levels…the tendency of my sleep disorder to make me sleepy during the day doesn’t help either, but I’ve been dealing with that since high school and have been taking meds for it for several years without officially knowing that I was dealing with a sleep disorder, so I have strategies to deal with it.

I continue to make myself an annoyance in my community about accessibility issues by sitting on two planning committees as a community representative with accessibility expertise. I’m very happy with my experiences on these committees – I’ve felt very welcome, and that my contributions are valued.

My Brain AVM Story: Gratitude

I have such a lot to be grateful for and I try to remind myself of that every day – I’m reasonably healthy, I have the means to take care of my basic needs (including meds and dental), I have a family that loves me, including two nieces and a nephew (all beautiful and brilliant, of course, and what a privilege it is be watch them grow!), I live in a community full of people who look out for me, and I have loving, supportive friends all over the world.  I go to an employment centre three times a week not because I need a job, but because my office is located in the building; my co-workers are great.

I have a blog that no one (that I know of) has called to be closed down. If y’all don’t like me, you’re being remarkably restrained about it.

Lots of people have come out of the same brain AVM surgery I had a lot worse off.

We’ll see what the next year holds.

More information about Brain AVM

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