Monday, October 27, 2014
Friday, October 24, 2014
Monday, October 20, 2014
Saturday, October 18, 2014
Wednesday, October 15, 2014
Two years ago and change, I had a clear goal: I wanted to get home. It was not very generous to the home I had lived in for most of the recovery until then, my father, stepmother and sister's home. Nor very generous to them, or the many people around me who were invested in my recovery. Nevertheless I wanted to be well enough to go home to New York City, where I've lived all millennium.
Without realizing, I had a clear and attainable goal for exercise, and through exercise, recovery. Returning home, though, has been a problem. Sure I have a ton of friends here, and a great support network, but my goals for recovery have been too distant, and I have often failed completely and fallen into a mire of doubt, depression and inactivity. My goal to walk on my hands again is too far away to be useful.
I also have a different perception of expectations here in New York. When I don't go to the gym or pool, then I feel as though I'm the only person who suffers. Back in England, I feel more keenly that I am disappointing the people around me. It doesn't make a lot of sense: people in the US are just as invested in my recovery, and people in the UK are invested regardless of where I am (not to mention those elsewhere). It may not be wholly rational, but I find it easier to exercise in the UK than in the US.
Of course, since I'm aware of the problem, I'm trying to fix it, but setting a goal that makes sense is hard. Right now, I'm lucky: I have a definite date by which I want to be in as good shape as possible. That means swimming 3-4 times a week, and going to the gym 1-3 times weekly. Or I fail. No excuses, no alternative.
Come January, though, what then? Goals to lift weights aren't very useful to me. I already swim for at least an hour and a half, non-stop. What next? Something attainable, achievable through diligence, beneficial. If I think of something, I'll let you know.
Tuesday, October 14, 2014
Some of the earliest advice given to me after the strokes* was to doubt received wisdom. I have found that advice to be good, for several reasons.
First, most people don't really get probability; that's why casinos work. When something is classified as "very unlikely," it is important that the possibility still obtains: "very unlikely" is NOT "impossible." Recovery is possible.
Second, doctors don't know everything about the brain, although they are usually in authoritative positions. As much as we would like to get answers about our brain damage, and as much as we expect doctors to have those answers, they don't. I'm not saying that they're not experts, but research into the fundamentals of the brain is still happening. They don't have all the answers; nobody does.
Third, the physical brain and the insubstantial mind are related. They are not separate nor separable things. Some brain damage causes changes in personally, beyond the behavioral changes that are an inevitable consequence of having brain damage.
Fourth, recovery takes a long damn time. A lot happens that doctors never see, and rarely perceive. They often have too many patients, and are not geared to detect the slow, steady improvements that are a feature of brain recovery. By and large, our changes are not going to appear in blood, urine or even spinal fluid samples. A specialist might see you once in the first six months and never see the small daily improvements, or the hard work that goes with them.
Thus far, it is not possible to deny anything I've said. That truth should be enough for anyone. I'll speculate: The thought that recovery is possible is necessary, but not sufficient, for recovery to occur.
Saturday, October 11, 2014
Thursday, October 9, 2014
Last night I watched the first few episodes of Marvel's Agents of S.H.I.E.L.D.. One of the characters, Fitz, has brain damage now, and it is, for me, one of the best written and acted rôles of the season.
He has frontal lobe damage that manifests as an inability to find words, and match words to ideas. For a character who is verbal, intelligent, and uses verbalization to trigger problem-solving, his affliction is crushing.
People around him treat him with kid gloves at best, and at worst as a fool only kept on out of charity. He is more frustrated than anyone at his own disabilities, but remains the intelligent person he was.
Perhaps I am projecting a little, but it is very well done, if y'ask me.
Wednesday, October 8, 2014
One of the aspects of brain damage is the propensity of corporations to seek out sick people and give them a good kicking while they are ailing.
It's not just the medical industry either. We all know how badly screwed that is, and how fortunate that only doctors worry about trivial things like the Hippocratic oath. No, it seems like every corporation is designed to find anyone with disabilities, and make life hard for us, because it isn't hard enough already.
The attitude of over-charging speculatively, because punters can either afford the charge or have time to research and challenge it, is unethical, lazy, and just plain wrong. I'm sure it profits shareholders, though.
Today's recipients of my rage, frustration and copious cursing (but not a nickel) are ConEd and Mt. Sinai. Screw them both.
Thursday, September 4, 2014
Being moderately polite and an Englishman in New York, I like to get out of the way of someone coming in my direction. That's not always possible these days, but the intent is still there. It has therefore been unsettling to swerve towards people I'm trying to dodge. And weird.
Years of urban living made me quite good at removing myself as an obstruction without reducing my own velocity nor ending up in anyone else's path. I never thought about how I moved, I just got out of the way and kept going. Walking with a stick and without full control has revealed some of that mechanism, and its unfortunate side effect.
To keep moving, I was shifting my center of gravity to one side, and moving my body to the other side, all timed to coincide with crossing paths with the oncoming person. The net motion was that my center of gravity didn't move a lot—and I could keep traveling forward—but my body moved to one side, so I was out of the way. Neat and efficient, when you can do it.
As I've got stronger, some of the automatic behaviors are returning, but certainly not all. In this case, I think I have been shifting my center of gravity, but can't move my body at the same time. The net result is that I lurch towards things that I am trying to avoid.
Now I understand what's going on, it's easier to prevent. It's yet another thing to think about while I am walking, but I am less likely to crash into things I don't intend to, so Progress!
Wednesday, September 3, 2014
Nearly three years on from the set of strokes that gave me brain damage, I don't know what I expected, but my life is not wonderful. Perhaps I thought I would have got better, faster but I haven't. I've been a lot more depressed, and consequently inert, than I thought I would be.
Looking back, I underestimated how debilitating the impairments I live with are. Individually, they don't seem that bad, but in combination they're frustrating. They are also binary: improvements are great and all, but the underlying problem still obtains. My vision has improved a little, but I still have double vision and oscillopsia, so my visual world is… bad.
Ataxia seems like it wouldn't be so terrible, but I can never just stand up, or just turn around, or even just walk down the street. I have to pay attention, I have to be conscious, and even then I can never be certain that my limbs won't betray me. Two and a half years ago, I thought I would be leaving my stick behind. I was wrong. It's an inconvenient necessity that is ever-present. The few times and please I leave it at the door are relished, but times of great care.
The tremor is laughable, but all-encompassing. Try only using your off hand for anything. Then imagine cutting an onion with a knife hand that shakes at random. It is quite tricky. I don't even bother thinking about the facial palsy, and speech impairment.
All of those things are improving, but it is taking such a long damn time that I find it quite tough, quite a lot of the time.
I seem to have no good news, although I am sure the slow, steady improvement is a good thing. From the inside it is exhaustingly slow, and utterly tedious.
So, if I shut up for a while, it's most likely because I am heartily fed up with being a shadow of my physical self, and just want to go play video games and not think about reality for the duration. I'll be back, probably just the same as before.
Friday, April 25, 2014
Monday, March 31, 2014
Soon after I had the strokes, I couldn't care less; that I could feed myself was enough. Now, though, I loathe the idea that I might be thought the sort of person that would leave the house dirty.
Tuesday, March 18, 2014
Tuesday, March 11, 2014
Thursday, February 27, 2014
Wednesday, February 26, 2014
Friday, February 21, 2014
The month or so before I had the strokes is gone. I have no memory of it at all. In fact, I have repeated almost verbatim discussions of great urgency that came to the same conclusion, and were thereby resolved, in the weeks before the strokes. I know because I have the email chains. Conversely, if you are expecting me to respond to email you sent in September or October 2011, good luck with that; you are going to be waiting for a long time.
The joke is on me, though. Two and a half years on, and I suspect that my memory has taken damage. It may just be that the relative monotony of my life at the moment makes things harder to remember, or that I am simply getting older, but I don't think so.
In some circles of friends, my memory is notorious for being poor. That's always been amusing but slightly unfair: it is the indexing that has failed me; once triggered, the memory itself is clear and thorough. This experience is different, though.
I've found to my surprise that there are events, places and even people that I have no memory of at all. I was quite comfortable with the idea of a lost month or so: there is no way to magically encode the events that are gone into long-term memory. The prospect of not recalling things apparently at random is unsettling.
Memory is unreliable. That's why I chose to record how I felt on 9th September 2001 that day (TL;DR: I was there). I knew that my impressions of the day would change in the years since, but they're still there. That is the novel sense for me: memory that is not necessarily merely unreliable, but wholly absent.
It would be much easier if only boring things were consigned to the mental black hole, but that doesn't seem to be the case. Interesting people, places or events are susceptible, too. It may be that I lose things when I'm tired, or when I'm paying particular attention to something else, I don't know.
The best I can manage is to be consistent in my behavior. Happily I am less fickle than ever, so when I think I wouldn't have done something that I don't recall, the chances are I didn't do it. Of course, those may be times that brain damage is making me behave erratically, but nobody has said anything yet, so I shall continue to assume that my mentality is essentially unaltered.
I'm still going to claim brain damage whenever I don't know your name, though.