A glimpse into my brain-injury world

Posted On February 11, 2022

My regular readers will know that I haven’t posted on the blog for a very long time (since November 25th). For the past few days I’ve been trying to write a post that will give you a glimpse into my current world. It’s a confusing and overwhelming place, and after countless edits, I hope this comes across in a coherent way rather than reflecting the chaotic state my brain is in.

The thoughts about how, and indeed if, to write this, added to the overwhelming nature of my world. Depending on the complexity of thought required, I’m only able to read or write 2 or 3 paragraphs, or listen to a couple of minutes of news, podcast, etc. As a result, this post has been written a few sentences at a time.

I’ve had to step away from the Facebook groups I run. Posting anything worthwhile is simply beyond my abilities. Luckily I have great admins who have taken over to keep things functioning smoothly. Even photography is pretty much beyond me – we had a good aurora yesterday, then a massive RCAF Globemaster arrived. Those two things would normally get me scrambling to get my gear together and get out, but in both cases I was unable to do anything except shrug “whatever” 🙁

Physically, I’m unable to walk without a cane or walls to assist, or I walk like a drunk. While I can “power through” some things for a few minutes, it quickly makes me sick and I have to go to bed. Three hour-plus naps each day is the norm now – which my little dog Tucker thinks is great 🙂

My problem began on August 6th, 2019. In my blog post about it a few days later I reported “I had a bad fall at the spot where I took the two photos above. My tripod started to fall, and in grabbing it, I twisted and fell backwards, landing on a small boulder with my tailbone. The pain was literally blinding, but after a few minutes recovery and some test movements, I decided I could continue with the hike.” By August 18th I had spent a week in the Whitehorse General Hospital and was about to fly to Vancouver to be admitted to the spinal injury unit at Vancouver General Hospital – the blog post that day describes what had transpired up to that point.

I have never gotten a diagnosis. The doctors at Whitehorse hospital used the term “spinal trauma,” but my neurology team at VGH said “we don’t have a name for it.”

The time since my injury has been a roller-coaster of good periods and bad. Even during the good periods it’s always been clear that I was “delicate,” and I’ve tried not to push my luck. Those of you who know me well know how difficult that’s been! 🙂 (and I haven’t always been successful at that). Where I am now, though is, I’m quite sure, the worst I’ve been.

My memory now is fragmentary – if there is no photo, it likely didn’t happen unless it was very important. Luckily, I have tens of thousands of photos on my external hard drive. To fill in the details, I have posted on my blog 1,472 times – it’s pretty much my journal over the past 16 years since I started it. I suppose to a fairly large degree that’s why I’m writing this – if nobody else reads it that’s fine, it’s my record of what’s happening.

Although my brain can’t handle anything complicated, I am able to do the mechanical cut-and-paste required for the blog rebuild to the new larger-photo format, though with increasing difficulty. That’s what fills much of the part of my days when I’m not in bed. Of those posts, I only have 229 more posts to do. Once those are completed in 3-4 weeks I’m not sure what I’ll do – even scanning has been too overwhelming most times I’ve tried it.

The reality is that I may now be dealing with more than “spinal trauma” / “brain injury” / whatever. A brain injury can trigger dementia. Depression can also mimic dementia. My doctor has me on a couple of drugs to deal with depression and terrible sleep patterns, but while they’ve helped with those things, there’s been no improvement in my symptoms. She referred me to a brain clinic in Calgary, but the referral was rejected “due to covid” – only local referrals are being accepted. Their specialty, though they apparently look at the big picture, is Alzheimers and dementia. I’ve looked for journals written by people dealing with a decline into dementia, but have been unable to find anything. My research skills now suck, though, so if you happen to come across one, please let me know.

Staying positive isn’t easy, but I know that it’s extremely important. On February 10, 2020, a very difficult time, I posted the image below on my Facebook page.

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By a truly bizarre coincidence, I posted the same sort of message with a different photo yesterday – 2 years later to the day.

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I don’t get out of the house much now, but last Saturday, a friend posted that she was going to do a demonstration of support for health care workers and the health care system on 2nd Avenue in downtown Whitehorse. I joined them. I was only able to stay for a little over an hour and it was all I could do to get into the house when I got home, but it’s turned out to be as important to the community as it was to me/us. We made the front page of The Whitehorse Star, and we’ll be back on the street tomorrow – indications are strong that there will be a lot of people with us. As well as the obvious, this gratifying re-focus for a while is good for me.

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So that’s the basic current status of my world. I have no idea where this is going or when I’ll be able to post again. Take care of each other, and value every day.