When I was my sickest, I couldn't really take in information. As I've been getting better, I've started to catch up a bit. I've started reading about MS and neurology, and one of the things I've dug into is the trove of my journal notes, which I can get digitally. They're fascinating reading. They show the slow path of finding out what was wrong with me and they hint at some of the mistakes made by some of the people involved - I'm not saying those mistakes were necessarily the fault of the doctors, I can mostly understand why they thought the way they did. Much of the red herrings follow straight from my story as I lived it and as I told it, and not even my telling was at fault, I'd tell the same story again and it would have been fabulous if those conclusions those doctors came to had been correct. Sadly, I wasn't just depressed and in need of a good shrink.
There are also some interesting observations about me in those journal notes. Like "tends to give very long answers". I bet readers of this blog and people who know me in real life or from the internet would happily agree with that. I have no idea what giving long winded answers is supposed to mean in doctor-speak, but there it is, and it's true. I try to tell everything I have even a suspicion that whoever I'm talking to, and who probably knows more than I do about this crap, might recognize as relevant. Just like how I want my users to not edit or censor their error reports thinking they know what has gone wrong.
Another observation in the journal notes that at first I found baffling occurs several times, and I've gotten it a few times in peson as well, is that I'm "extremely competitive". This just doesn't fit my image of myself. I'm supposed to be this laid-back person who, if anything, seems to not care enough.
However, when it comes to driving my therapy on, I'm pretty vicious. I'm not allowing anything to stand between me and my workout. I decided as soon as I had some idea of what was coming that I would claim every benefit there was to be had. No shrinking from interviews or forms, if there was something I'm entitled to, I'm going to claim it. None of that "I'm doing ok, don't worry", I'm sick enough to take all the stuff that's promised and pity the fool that stands in my way cause I have a really heavy binder full of papers saying I should get it and I'll smack whoever tries to stop me over the head with that binder and a truck-load of guilt. So far, it's working pretty well.
Being me, I prefer therapy I can measure. My first weeks were quite easy - I couldn't walk up the stairs so I started counting the number of steps I could take and lift my right foot up the next step without touching it on the way up. After a week or two I could do it all the way up. I upped the challenge a bit, I tried running up but it's really hard work and often I can't do it because I'm too tired to begin with. I started logging my walks. I began using Endomondo a few years back for my inlines skating and it works just fine for my convalescent walks as well. So I started logging those walks and I'm really glad I did. They show very nicely the progress I've been making this summer.
One problem with walks is that I can't really increase the challenge beyond "walk for about an hour". I can't increase the tempo because I can't control my pace very well, every step is at the pace my body sets, not my mind. Secondly, MS fatigue sets a pretty hard limit on how long I can keep going, and evey day has a different limit.
One ingredient in my daily walks, from the start, has been Ingress.Ingress is an "augmented reality game" which means you play it in the real world and the game adds its game content on top of the real. In this case, there's some sort of ... stuff, coming from the centers of human activity and attention, and two sides of players compete to control the stuff. The game comes from Google and it's played on a version of Google Maps. The portals, as they're called, are assigned by Google from player submissions and the game is at least partially driven by Google's data of demographic and usage patterns. Wherever people move around becomes a hot spot in the game
The game is still officially in beta test but it's not hard to get a game account (as long as one is happy to remain or become an Android user). I got an Ingress account in January. At least that's when I tweeted about my first impressions. I loved it, it's a fantastic idea, beautifully implemented. I didn't play it a lot though. Back then, there weren't enough portals around for it to be all that fun and I wasn't interested enough to play a lot. Plus, since the game requires one to visit actual places in the real world (a bit like hunting geocaches) it was getting harder every day for me to play it.
However, once I emerged from the nightmare, in need of motivation, Ingress was waiting for me. By then the portals were everywhere and there were a lot more active players. I found I had a few portals within walking distance of my home, and I started visiting them every day. First one, then two, then more of them. I was also running my exercize tracker but that was always just logging. I soon started saying I was going out to "check on my portals". There's no real need to visit a portal to check how it's doing although you do need to visit them in order to harvest some resources needed to advance the game, it was just something I said to explain what I was going to do. And so, the game magically started to assume the responsibility to motivate me.
Ingress became a reason to get out, the scapegoat I both needed and wanted in order to take another boring, frustrating walk. I was already getting very frustrated with how hard it was to reclaim what MS had taken from me. Ingress became a goal that bypassed some harder things and set something small within reach and I let it motivate me and I blamed it for quite a few unnecessary expeditions to places I didn't really need to visit when I'd much rather have stayed at home on the couch, dozing off, instead of worrying about where to find a toilet and looking nerdy stumbling about with my crutch in one hand, phone in the other, looking for a portal to attack.
I let the game become my focus whenever I could afford to (and I still do). It's reminiscent of Jane McGonigal's Superbetter (in "the game that will add 10 extra years to your life". If you haven't seen it, do it now. Just click. You're welcome)
Now I didn't have a concussion and I wasn't depressed. I didn't have ALS ("The best part of having MS: not having ALS") or any other terminal illness. I certainly didn't want to die, quite the opposite: I thought I might be dying and I didn't want to.
The allies I make in this game are my allies in extending my life and getting better. Superbetter in McGonigal's words. We even have lunch dates to play. If you were ever a gamer, you can imagine.
I still have MS to deal with, and I don't have any illusions that I will discover The Cure (that would be a beyond-epic win - see McGonigal's first TED talk) or that my recuperation will take me anywhere near where I want to be, healthwise.
However... Among the really, really odd, spaced out weird, strange symptoms I've experienced, a recent one kind of stands out: if you know how touch displays work, you know that most of them will route a tiny electrical current through your finger in order to find out where you're tapping the display. That current is normally too tiny to be felt, but since a few weeks back... I can feel it. I'm speculating that my body is relearning so much, that might be allowing it to pick up this little signal and register it in my brain.
Or, maybe it's my level 10 special ability in the get-well game. Sort of like an X-men mutation. I think I totally deserve one.
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