A glimpse into my brain-injury world
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.
By a truly bizarre coincidence, I posted the same sort of message with a different photo yesterday – 2 years later to the day.
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.
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.
About The Author
Well, I think I can speak for all your blog followers and friends here by saying, that this is NOT the post we were hoping to see to kick off 2022. As the fall progressed and you had some good days out in the field, certainly my hopes for your continued recovery held steady, but knowing the progress did not h0ld around the time you posted in November about going to see your children… That you are still not recovering, since August 2019 staggers me and shows how much modern medicine still does not know about the spine, brain function, and so much more. For all the dozens of hours that I have read, enjoyed, followed links, adventured and followed your trips in my mind and imagination, it bothers me very much that we cannot help your mental health the way you have brought so much enjoyment over the years to our own (mine especially).
Thank you for the update, as sad and disturbing as it was to read – and only best wishes for a diagnosis and recovery … we need you back, my friend.
Comment
https://www.dementiauk.org/about-dementia/young-onset-dementia/young-onset-dementia-resources/blogs-yod/blogs-by-a-person-living-with-young-onset-dementia/
https://uwaterloo.ca/living-well-with-dementia/personal-stories
Murray you are in my prayers for a speedy recovery
I follow about half a dozen blogs of people whose life I envy. You are fortunate to be living in the far north. Neurological challenges are extremely difficult and elusive in solutions. Often progress is a few steps forward and a few backward with a true net change over time. There can also be dramatic change in either direction without a clear ‘trigger.’ Rest and nutrition is important. You might find that trying to achieve your old lifestyle is filled with challenges and the obstacles overwhelming. Setting some personal goals in a less “what I used to do” might give positive feedback.
There are a log of people thinking of you and all wish you better health.Jo
I feel so awful for you, Murray. I”m only 5 days into a healing toe surgery, and already going batty! I cannot imaging what you are going through. I hope hope hope pray pray pray that some miracle comes your way and as quickly as your injury came it goes. Your blogs and photos have inspired me (and so many others) on many an occasion, and that is such a lovely thing. Sending healing energy, as much as I can spare.
I think of you often and basically quiz every medical person I run into about your symptoms…trying to get another perspective…to no avail. . Brain injuries manifest so many similar symptoms to other ailments…so frustrating for you. Sending you healing energy.
Sending healing prayers.
Thank you for the effort it took to tell your story. Maybe someone else is dealing with a similar condition and needed to hear it. By your honesty, and determination to carry on, whatever that looks like, you are an inspiration. We think of you often and send you prayers, and hugs. Hang on.
Sending big hugs.you are a big asset to the Yukon. Thank you for all your hard work. Now is the time to look after yourself.
Wishing you all the courage to persevere. I have friends down here with similar injuries/results. One involved her optic nerves where she got sea sick doing nothing. Another person landed on her tail bone and ended up fracturing a small bone in her inner ear. Another was diagnosed with MS. I hope you get the medical help you need. It seems like a handy excuse to diagnose dementia in older people no matter the cause.
You are taking very good care of yourself surrounded by the love of your family and fur kids.
thanks for the realism of the present times. All you posts and research have been of keen interest to me and many others.
I wish only that your going to be comfortable with where your at in these times.
Thanks for the blog update, wishing you strength and healing. A book we found helpful in similar circumstances is called The Brain that Changes Itself by Norman Doidge. Take care
❤️
Comment❤️ You will persevere because your Murray Lundberg ❤️
Thank you for letting us all know in what space you are currently in Murray. My offer to go out for short drives still stands, just let me know when you are up to it. Love you lots.
Geez… wishing you nothing but the best….take care.
Good blog. Hang in there. There will be help available and keep exercising your brain to your ability. Sending love and healing energy.
❤️