The Most Disturbing Thing I've Ever Experienced

Scarier than jumping out of a plane, being poisoned, vomiting blood, being told you're going to die, being shot at, wrestling alligators, or a car crash, is memory loss.

Yesterday a friend of mine, Scott, sent me a Facebook message.

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U watch "myths and monsters" on netflix yet? ... it's about mythology and books and why/how they write their books .. I thinks its interesting figured youd def like it

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I was playing a great role-playing game called "Call to Adventure" with a couple of friends, so I simply responded.

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I haven't yet, but I'll check it out.

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Today I did check it out. I watched the first episode. I cannot tell if I've watched it before, and that's disturbing.

Even though I had my African ordeal in late 2015, I didn't realize I was having memory issues until a few months later. I slowly noticed that my short term memory was not good, and not getting better. That made sense, when you're having major health issues you might not be in your best state of mind.

But a few months after that I started having long term memory issues. I remember the first word that I couldn't read. I was at a Toastmasters meeting in Grand Haven, Michigan. There was a word that I didn't recognize, so I asked someone what it was. They thought I was joking. I laughed, but told them that I wasn't joking. They thought I was still trying to make a joke. It was awkward. The word was "piece."

That's when the world really started to unravel for me. The medical establishment was less than completely useless. I started tracking my working memory. You can do this through various means. One of the most common tests is to display a series of numbers one by one, then have the person repeat them back. The normal range is 7 to 8 digits. Before my health issues my numbers were around 9 or 10. At one point I dropped down to 3 or 4. At that level of working memory you can't really function. Working memory tracks with fluid IQ. I dropped from the top 1 or 2 percent to less than average. I could barely process information.

One annoying aspect of it was that I couldn't understand the books I tried to read. I've read thousands of books and it was a real blow to my identity to struggle with reading. At that point I was a mentally slow struggling reader who couldn't remember anything. That was bad enough. It wasn't like I could try to cope with that by doing anything either. I was weak and having major heart issues. I couldn't walk from one end of the small house to the other without taking a break to breathe and rest at one point.

This is the weird thing to understand about all of this though, those aren't the worst things. The worst part was the long term memory loss. And it's not because of the reading issues, it's because of the memories of living. If you take away all of the memories that you have of you living your life, who are you? I still don't have a good answer to that question. Between the extended heart issues and the increasing memory loss I figured I was looking at my end of life situation, and that somewhere in between a couple of months to a couple of years I would be completely non-functional. Amazingly, I've mostly recovered by walking an unusual and winding path.

But those darn memory issues, those memory issues will never leave me.

Which brings me back to this "Myths & Monsters" tv show. Watching it is an odd experience, but one I've now gone through many times. When I go over something that I used to know, but was deleted by the damage to my brainstem, it's kind of like moving through a partial dream while awake. Brain damage causes all sorts of altered conscious states. (I saw stars on a daily basis for more than a year. Bright twinkling stars, shooting stars, black spots, all sorts of things. That's probably damage to the occipital lobe.)

Truly, I'm trying to walk my brain through one of its own memories, and when I encounter things that I've lost the memory of it feels a bit mystical.

I've gotten lost on the roads that I grew up driving on many, many times in the last few years. I've had trouble remembering things from my life. I've struggled with reading some words. But I've been able to reactivate, relearn, and reassimilate all of these things fairly quickly (a few years). I think that's because most of my memory loss was probably caused by the loss of myelin, which is the material that wraps around neurons when they fire to make them more efficient and effective at firing. By working on refiring those neural circuits I activate the glial cells floating around in my brain to form new myelin, and get the dendrites and axon terminals on the ends of the neurons to reach out and grip onto each other. Just by re-exposure to these things I've been able to rebuild a lot of my memories. Having a lot of books with all of my underlining in them has helped. A willingness to drive around completely lost has been helpful, even though it is rather frustrating.

This television show is the same thing. It came out in December of 2017. I can't remember if I was having serious memory issues at the time (ironic), but I must have been. Over the next week I'm going to rewatch this show. My neurons will be reactivated and coated in new myelin. My brain will become more connected, and something that I should know will be restored.

This process of struggling with memory will never end of course. Currently my memory is better than most people's. I joined the Mensa high IQ society after having brain damage and while working through my recovery. Most people that start losing their memories will never recover. You should still try, always try. But we need more than that.

Keeping pictures is great. Keeping videos is great. Keeping writing that you've done is great. I've done more of all of that in the last few years. I often think about the next time. When my memories start to go away next time will I be able to handle it better? How should I approach it? How should I prepare for it? I need to etch a mark, to leave a record that I can look back on without having memory of it and say, "That guy lived an interesting and meaningful life."


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