On December 15th of last year I came home after having a vaccine booster and felt fine, aside from the sore arm. I had my lunch, and dinner, played some Dungeons & Dragons with my wife, and then went to bed. In the middle of the night I had some kind of attack. My face felt like it was made out of rubber. It wasn't drooping, I had control over it, but it had no sensation. My hands and feet felt like they were on fire at the same time tingling as if they'd had the circulation cut off.
I thought that perhaps I had been sleeping in a way that had pinched a nerve, and decided to take a wait and see approach. Honestly, it didn't strike me that it could be a stroke, and so I held off on seeking medical attention.
My face mostly returned to normal, except my lips were tingling, getting occasional stabbing pains, and feeling like they were on fire. The same was true of my hands and feet; tingling , stabbing pain, and phantom heat sensations. When I finally got to speak to a nurse-practitioner about it when it wouldn't go away, I was immediately hauled up to the hospital where they ran a handful of tests. They determined that it wasn't some kind of diabetic shock (I am not diabetic, but ruling it out was important), and it wasn't a stroke. The ER doctor assumed that it might have been a side effect of the vaccine. They told me it would be gone by Christmas, and that I should just carry on.
The problem is, it didn't go away. In fact, it got worse. The numb areas would occasionally stab painfully, my lips would burn and tingle so badly I didn't want to talk or eat. Walking was always uncomfortable. Typing was torture. What's more, I started getting tired all the time. There have been days in the last 11 months where I can't walk two kilometers without feeling so exhausted I need to take a nap afterwards. These piled on to a couple of previously existing conditions, including the habit of every cold I get turning into pneumonia, to make me feel like the walking dead.
The worst thing was, we didn't have any answers. And medicine in Ontario moves extremely slowly. It took me 4 months to even get the doctor to confirm that I was not diabetic.
Finally, A Name
At 8 months I saw a physiatrist who spent quite a bit of time doing painful nerve induction testing on me. He said that all the evidence I presented to him pointed most likely to Multiple Sclerosis.
MS is a terrifying disease. It is caused when your immune system begins crossing the brain-blood barrier and mistaking the myelin sheath on your brain's nerve sells for a virus. Your brain becomes inflamed, and as your cells get stripped, you lose feeling, functionality, or control over parts of your body. Over time you can heal the patches of brain damage this causes, but never perfectly. Symptoms tend to come back when you get hot, and new symptoms can just prop up at random, and everything from blindness, to loss of physical control, to psychosis in a few rare cases. Is practically no weird torment a brain in an MS attack can't invent, because it is such a complex organ with connections to every other part of the body.
At first this really terrified of me. But, at the same time there was a huge sense of relief. If I had MS, at least it was no longer a mystery. There were support groups, people I could talk to, medicine that could reduce or relieve the symptoms. It would be ways to get access to extra medication and help when I was sick, so that I wouldn't develop pneumonia. And I could read a few books on its history, it's prognosis, and the current science and developments.
Once Again, A Mystery
Of course, we hadn't diagnosed it yet. It can take quite a while to get a diagnosis of Multiple Sclerosis. And again, Canadian medicine in general and Ontario in particular is pretty sluggish. It was only last weekend that I finally got the results of another panel of tests including an MRI. And the result? Completely inconclusive. No signs of the kind of brain damage typical of Multiple Sclerosis. In fact, aside from wear and tear appropriate to my age, both my peripheral and central nervous systems appear exceptionally healthy.
On some levels this was a great relief. After all, now I no longer had to prepare for the kind of nightmares that MS puts people through. But now I get to be a medical mystery again. We have ruled out 98% of the probable causes of the numbness, burning, tingling that I have been living with for 11 months. We still have no explanation as to why I get pneumonia every time my kids bring home a sniffle. And, frankly, I don't know if I'm going to live or if I'm slowly dying. And there are no support groups or online communities that can help
For Lack of A Name
It seems ridiculous, doesn't it? You were told you don't have a life-altering degenerative nervous condition, and you feel disappointed?! But the problem is now I'm in the dark. I don't know what to call this issue except "chronic fatigue" and "chronic numbness." Those are not helpful labels. Especially as "numbness" in the clinical sense of the word is actually quite painful.
I don't know how to prepare. I don't know what I should or shouldn't do, aside from the fact that it can never hurt to get as fit as you can and get yourself down to your ideal body weight by hook or by crook. I don't know how to fight this enemy. On my good days I use this as a reason to practice mindfulness and meditate. On my bad days I'm crawling up the walls trying to figure it all out.
And that gave me a real valuable sense of the mystical power of a name.
When I had a name, even if I was only beginning to get the picture, I felt more at ease. I had an idea of how I was going to fight the thing. I had questions I could ask. There were YouTube channels and support groups I could contact. Now? Without a name it's easier to be afraid and confused and angry. I don't have a name for what I'm facing and that makes it far harder to deal with.
Okay, Back to the Hobby Blogging
In a role-playing setting, as long as you keep the name away from players, they don't know who to ask about what. They don't know which Sage to question, what books, or what ancient lore to seek out.
But when it's just a shadow stalking you in the woods and making no sound? Maybe picking off straggling hirelings without being seen? That is far scarier.
The moment your players have a name it takes away some of the mystery. And searching to put a name to some terror in and of itself is an accomplishment. If you can name the demon hunting the kingdom, then you can start asking the right questions. The name alone has the power to give people hope.
In the future, I will be using a lot less of the names of things. And making sure the name itself becomes a thing of power, not through mechanics, but simply by narrative structure.