Tag Archives | stroke

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.

4thEspecially 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 tired, 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 AVM Story: Working “Out There”, Working on Balance

Grey silhouetted hand. From index finger and thumb dangle a scale with "Life" in purple capital letters on one plate and "Work" in blue capital letters on the otherIt took a couple of years after my brain surgery and stroke, but eventually I was well enough to work.

It’s always been part-time. Work in the educational and developmental services sector is always part-time and contract when you’re just breaking into it these days, and in the area in which I live, work in general is usually part-time and/or seasonal. Most people work a couple of jobs to make ends meet.

Until recently, it’s been rare for me to find more than one job at a time that I can actually do, given my disabilities and the restrictions that they impose on me, although with freelancing there have certainly been times where I’ve worked the equivalent of full-time. But a writing job in my apartment and a desk job “out there” don’t necessarily require the same amount of energy from me, as I’ve recently discovered.

Since September, I’ve been working at a local computer centre, created especially for people who want to do online learning. It’s part of a government program, and a good one. There’s a small fine arts community college in my community, but anyone who’s wanted to pursue post-secondary education in just about anything else has had to take the big, expensive step of moving to a larger centre and attending school there, or commuting at least 2.5 hours round trip per day. With the increasing number of programs offered totally or almost totally online at Canadian universities and community colleges, the Contact North program allows people in rural communities like mine to get assistance choosing a program, get signed up, and to have a place with fast internet access to do their work if they need it.

Most weeks it’s not a whole lot of hours. But some weeks it has has been. And recently there’s been the welcome addition of a writing/research job with a small media production company in my town, for two or three days a week. I some of that work from home, but I like going into the office at least one day a week. My last two jobs haven’t been office jobs. I miss that environment.

I come home at night and catch up on with my freelancing, and often fall asleep at the computer as I’m working. I do a lot of catch-up on weekends.

I hear people who have had strokes talk about how they’re much more tired than they were before, and I remember when that was really the case for me. But now I tend to think, “That’s not me anymore” and I push myself pretty hard sometimes when, really, I don’t know how much of my brain is still damaged, and to what extent, and how it affects me.

I can see the effects of some of it, of course. But I don’t know if even my doctors can say for sureĀ  what all of the effects of the stroke were.

Everyone has to find a way to balance work and other aspects of life, and to figure out how to stay healthy and to schedule time for everything that they want and need to do. I’m grateful to be able to work and to have a lot of work right now, but I’m sorry that it’s not leaving me a lot of time and energy to write. I’m working on that. I’d like to be here more.

I’ve never been very good at the life balance thing. I’m trying to learn!

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