Monday, October 27, 2014

Movie Sequel Delight

On Sunday, I saw How To Train Your Dragon 2 at the ever-excellent Museum of the Moving Image. The movie is good, even allowing for my brain damaged overreaction, and I want to call attention to an aspect of the story that I think is admirable*.

By this second movie, the protagonist, Hiccup, has lost a lower leg, and designed a fantastic prosthetic leg. His dragon is also disabled and is only able to fly with a prosthesis. Neither refers to their disability with anything but humor, and informationally.

There is a significant moment when Hiccup has just met Cate Blanchett**, and points out his "peg leg". There are obvious nerves there, but her character just carries on. The disability is part of Hiccup, but does not define him by any means.

So, I think that's pretty cool: the protagonist, the hero, is the disabled kid who is beloved by his village and his family, independently of his disability. The movie is not about the lost leg, the prostheses, positively or negatively, they're just there, like the sheep.

For me, that's not where the good ends, and although I may be stretching here, I think that they got something else right. (Spoilers ahead!) The villain of the story, Drago, is revealed in the last act to have a prosthetic arm. He lost his arm to a dragon as a child, and has lived since then to wreak revenge on all dragons. In most movies, that would be motivation enough, he lost a limb, of course he became a bitter and vicious murderous warlord, right?

Hiccup is having none of it, though, and calls him on his lie, saying words to the effect of: you're a bad person anyway, irrespective of your supposed justification, you like being a vicious, murderous warlord. The villain can't demur (and doesn't).

There, writ large, are choices that face those of us with disabilities, and those without: How do I approach the disability (which informs and is informed by everyone around me)? How do I approach my life?

Hiccup's choice, buoyed up by everyone around him, is the opposite of Drago's. He chooses to go forward, rather than justify bad behavior with a hidden and shameful disability. Hiccup doesn't hide, and is not ashamed.

It's not the core of the story. It isn't greatly highlighted. It is there, though, and having disability be part of the scenery and a small, significant part of the narrative, is a good thing, and progress.

* I do think it's a shame that Hiccup and Astrid weren't gender-flipped in the first movie, but that's life; perhaps DreamWorks Animation SKG will make a different choice in future.

** I'm trying not to spoil the story!

Friday, October 24, 2014

Fear is the Recovery Killer

For most of the last three years, since I first got brain damage, I have lived with fear. It's a fear that is not likely to go away in a hurry either.

It isn't the fear of having more strokes; I certainly don't want any more, but I am not afraid of more strokes, and they're pretty unlikely.

I'm not often afraid of my vulnerability, either. I am an easy target: I can't run away, and can't defend myself, except to flail with my walking stick, which is as risky for me as anyone else. I have been*, but tend to avoid any situation where I might be again, so it's not a constant issue for me.

Most of the time, I'm afraid of falling. Whenever I get up, walk, climb a stair, step over a leaf, turn around, carry anything or take almost any action, I'm afraid. It's hardly paralyzing, but it is always there. I can avoid it by swimming, or sitting and lying in one place. I do plenty of those things.

The fear is based in rational thought, too: I'm 5'8" and weigh over 180lb**, and if I fall poorly it is going to hurt, even if nothing gets broken. Small children with the same level of coordination as I have enjoy a much lower center of gravity, more padding, and less mass. Gits.

Poor me, right? Sod that. What's worse is that the fear inhibits me. I'm afraid that if I walk up a stair with nothing to hold on to, then I'll fall over, or be at risk of falling, so I hold a rail or touch the wall and don't take the risk.

As I get better, and my motor control improves, though, the danger is that I still take the safer path. That I take the lower risk path with compensatory motion, rather than the more challenging, but ultimately more rewarding, high risk path of recovering function.

I have definitely noticed a tendency to safety that sometimes exceeds my ability. To keep getting better, I have to keep pushing myself in awkward ways. I can't let the fear rule me, because it isn't going away in a hurry, and it shouldn't, but it's not the boss of me.

* I was threatened anonymously. The risk to me that the threat was real, no matter how risible, was too great. I had to remove myself. He won, by threatening violence.

** For now.

Monday, October 20, 2014

Leaps and Metaphorical Bounds

In an earlier screed, about the received wisdom of doctors, I promised some personal anecdotal evidence of recovery.

Six months after having strokes I was told by an eminent neuro-opthalmologist that it was very unlikely that there would ever be a change in my eyesight or balance, and thus my walking. Happily, I thought "bollocks," and carried on (perhaps I should make that a t-shirt).

Over the last three years, recovery has been slow and, on a daily basis, imperceptible to me. I can look back a month or six, and see improvement, but yesterday usually looks just as crappy as today is and tomorrow will be. There have been a couple of times when something has changed in a noticeable way.

One such change happened a few weeks ago, about a fortnight before the third anniversary of my strokes. Let me be clear that this is not an instance of my suddenly noticing a slow change, but rather a dramatic—for me—shift, where I had to figure out what had changed and why it made things better. Again, this happened three years after my brain was first damaged.

Until then, I realized, although I have worked to make my affected right leg function well, it was not able to bear weight. My center of gravity, therefore was shifted left, and hard to control. Since then, my right leg is able to take my weight some of the time, and as a result I have greater control of my center of gravity, and my body.

For me, this is a huge change, with substantial benefits (I walk better, turn more easily, stagger like a drunk less), and it is not muscular: my musculature hasn't changed. The change was in my brain. Pathways were permanently dedicated to this function, doing the work of brain matter destroyed by the strokes.

The net result is that my balance has improved, at least as far as the outside world is concerned. It's hard to tell whether my sense of balance has improved, I think it has, but my effective balance has indubitably improved. This doesn't contradict what the eminent physician said, but I do not think I am physiologically exceptional, nor do I think that recovery is unlikely. Hard? Yes. Slow? Hell, yes! Unlikely? No.

I am lucky: physical impairments are more simply overcome than cognitive ones. The damage was also to my brain, not severing any nerve fibers, which is a hell of a lot harder to fix. Nevertheless, my point is this: recovery is possible. It continues to occur, and occasionally, it takes sudden leaps, long after any damage first occurs.

Saturday, October 18, 2014

Swimming Angry

Several years ago, before I had any strokes, I was discussing life online with a friend, who is a prominent author and has a considerable online presence. She told me as a matter of course, that whenever a woman gets a sufficient online following, then she has to deal with a flood of misogynistic abuse that includes death threats. I was aghast, and incredulous.

I had worked for Google; I had been online for about 20 years: how did I not even know this happened? She cited the example of a woman who ran a knitting forum. Once it got about a hundred users, the abuse began, and continued until the site was closed, and the owner had been driven offline. A knitting forum.

I was astounded. I told friends and colleagues, but did nothing, and in that I failed. Subsequently I was a bit preoccupied with recovering from brain damage, and that's mostly what I have written about, until recently my inaction years ago bore its inevitable toxic fruit, and this time I must try to do more.

You may have heard about 'GamerGate' and maybe thought it was just a few gamers being bad people in their odd little corner of the Internet, or considered it someone else's problem, or felt powerless to do anything about it. I disagree. It is symptomatic of an endemic ill in our society that we have a responsibility to eradicate. The abuse of women online is an expression of misogyny in our civilization and it must end.

There may have been useful or interesting points in GamerGate, but the moment a rape or death threat was made, the argument was lost, and those points became irrelevant. Threats of violence and harm are not acceptable, ever. They are not acceptable face-to-face, they're not acceptable in an online discussion, they are simply not acceptable in this society. The threats have been, and continue to be, made. The argument is over, superseded by a more pressing problem: someone thinks that making those threats is acceptable. It is not.

That is where we have the power and responsibility to act. Parents, tell your children that this is unacceptable behavior. It is never OK to threaten violence. It is never required to tolerate threats of violence. They have no place in our society. Those of us who play online games likewise have a responsibility to reject misogynistic behavior or speech whenever it occurs. Preferably leave after kiting a huge train of mobs onto the fools, but leave anyway, and if you have the facility, say why. The short-term cost to you is worth it to fix civil society. We all share that responsibility, everywhere. Don't be silent, don't wait for someone else to fix this, act.

I don't know anyone in my circle that I think is capable of treating people that badly. If I do, they are not welcome. Anonymity is an essential feature of the online world, but to abuse the privilege of anonymity to perpetrate acts online that would be unacceptable offline (and quite probably illegal everywhere) is cowardly and shameful. If you do that, I have no interest in knowing you, go stand in the corner and wear a dunce hat, because I think you're a fool.

Women hold no special appeal nor place for me: I'm about as gay as you can get. I hope I have never treated any woman as anything but a person in her own right. This is unacceptable behavior to anyone, and by anyone. If I have in the past, I was wrong, and I am sorry. If I do in the future, call me on it: I want to know. 

I believe in a civil society. That comes with benefits and responsibilities: benefits like being able to walk down a street without being killed, roads, and garbage collection. Responsibilities like taxes, not killing people, and reinforcing social norms. Those norms change, society today is not the society I grew up in; that's often a good thing, and I fought for some of those changes. The corollary is an onus on us, the beneficiaries of that society to reinforce the behavior that is acceptable and to call out the behavior that is not.

It is not OK to threaten harm.

It is not OK to do harm.

It is not OK to treat anyone as less than human.

Wednesday, October 15, 2014

Scoring Goals

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

Received Wisdom of Doctors

Don't believe it.

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.

When we do not think recovery is possible, it is unlikely to occur. The brain evolved for efficiency: use as little energy as possible to perform tasks. Don't train both hands to be deft, stick with a dominant side, for example. This is antithetical to recovery** which requires that we do things poorly again, clumsily , slowly and awkwardly to learn how to do them competently and even well once more. When we don't think there's any point to doing things the hard way, then we don't and an opportunity for recovery, instead becomes further reinforcement for compensation. The thought that recovery is possible is necessary.

It is not enough, though, just to sit on your tush and think "I can recover!" to yourself. You have to do something about it. If you have brain damage, somebody, somewhere has said "use it or lose it" to you***. Recovery goes further than that, it requires that you force yourself to do things the difficult way, it is often tedious, and it mostly sucks. The alternative, inaction and stagnation, is worse. I'm lucky: the damage I have is not cognitive. I can fix physical things comparatively simply. I must do the work, though.  The thought that recovery is possible is not sufficient.

Medical professionals use phrases like 'very unlikely' with experience, compassion and precision. It was unlikely. Believe that very unlikely means impossible, and it will stay unlikely. I dare you, instead to give them the lie, be the exception, and change the statistics, because recovery is possible.

In an upcoming post, I'll give you more personal anecdotal evidence of recovery. It surprised me, three years on.

* By Nigel, who had had his stroke six years before. He'd left in-patient rehab (and been written off by insurance, therefore) able only to wriggle the toes of his afflicted side. He walked into my hospital room.

** Although it is consistent with compensation, the side of rehabilitation I largely reject.

*** If they haven't yet, they will.

Saturday, October 11, 2014

Three Years Not Dead

My first strokes were three years ago, today; it's time for an update. I'm not sure whether to lead with good or bad news, but here goes:

First, I'm not dead. I think that counts as good news. 

Then there's all the stuff that is still a problem: I have double vision, oscillopsia, weakness and a tremor on my right side, and a facial palsy. I may be forgetting something obvious to others, but regardless, that's some of the not-unexpected not-good news. 

A lot has improved. I walk better; I have to go outside with my stick, but I still walk better. I'm fitter: two and a half years ago I was hard pressed to swim 25m without a break. Yesterday I swam just under 3km without stopping. That's good.

Some things, it's hard to say either way. I've been very depressed at times over the last few years. Sometimes because I have been flat broke, more often because recovery is slow, unpredictable,and hard to measure without the right equipment (see: broke). Right now, though, I'm not depressed. I'm swimming and going to the gym, I'm getting out a bit more, and even going on some dates. 

Mostly, things are relatively good, for now.

I've been thinking recently about 3 years ago, and how bad I must have been. Bad enough that it's taken 3 years for some of the people who saw me right after the strokes to admit how terrible I looked. Bad enough that I signed a surgical release on the first day, because they were mooting surgery to stop the hemorrhage, and bad enough that I spent eight days in intensive care. I have bad enough brain damage that three years on, recovering from brain damage is my principal occupation. 

Oddly, I suppose, I don't think of the brain damage, and associated problems as health issues. Hypertension, which probably caused the strokes, is a health issue, and one I'm being medicated for, but the neurological damage just doesn't seem to fit in that box. If you set the brain aside, I'm healthier than I've been for ages. 

I'm used to being the guy with a stick. Used to having wretched balance, to avoiding crowds when I can, and to absenting myself when I must. The exhaustion that comes is not, I think, peculiar to stroke, but is instead a feature of the learning brain, and thus it is inevitable when your brain has been damaged and recovers. 

I care less about mores. Again, this is not an aspect of my particular damage, but rather behavioral: I don't talk as much as I want, so I talk more to strangers, I'm nosier, and I share my dubious wisdom liberally. Writing is hard, so I run my mouth, which is easier. Disabilities are a great cover for this new habit: strangers can safely assume that I'm funny in the head, and who would hit the crippled guy anyway?

I can't say that it's been a good year, but it has been about as good as it could have been. 

Thursday, October 9, 2014

S.H.I.E.L.D. has brain damage

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

Kick 'Em While They're Down

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

Walking Tough

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

Time Passes, Slowly

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

Two and a Half Years

It's been a little over two and a half years since I had a bunch of strokes. Time, then to take stock of how the brain damage affects me.

The first thing to recognize is that I have improved: the facial palsy is reduced, and I can smile on both sides; I walk alone, but need a stick; my eyes have got better, I don't have a squint, and the double vision has diminished; increased sensation creeps up my right hand.

This change is all good, and still happening.  There are aspects of the damage that have still not resolved yet. It is impossible to say what is worst. The problems are all pretty terrible, and many of them are binary: I can tell that my double vision has improved, but I still have double vision, which sucks. So, here's what I am living with:

Reading is very difficult. I have to obscure one eye, or double vision makes it impossible. Then, each eye oscillates (independently), so it is hard to see which word is on which line. The net effect is that it is much slower to read all text, even with the best workarounds. Since I have spent 40 odd years reading exceptionality quickly, this is awkward.

The motion of my eyes makes faces illegible in realtime, so I rely heavily on vocal cues, and people are unrecognizable in the street. This deficit is most evident in large groups: it becomes hard to follow a conversation. I avoid parties.

My balance has been damaged, which is now the primary reason I use a stick. I sway and stagger uncontrollably and at the most inconvenient times. Staying upright takes work, so I tire faster. Working on my endurance in the pool has helped a bit.

I tremble on my right side. I spill, drop and fumble all the time. This is slowly pecked out on my phone with my left hand. The tremor makes it harder and more frustrating to use my right side, but I must if it is ever to recover. I drop my keys less often, but when I accidentally use my left hand, I am reminded how far I have to go.

Through it all, I fight against futility. It takes so long, and is such hard work, and for what? Even if I can recover enough to work again, how can I transition to a job? How can I afford to? Remembering that the alternative is unacceptable, and that defaulting to the easy choice is in fact choosing the alternative, that is not something I always succeed at. But the alternative is unacceptable, so I have to go to the pool and the gym, and I have to keep trying to keep up with life.

Two and a half years is a long damn time, but I'm not even close to done, yet.

Monday, March 31, 2014

Food for Naught

I like eating, at least as much as I like food. Unfortunately I am not very good at it. I've got better, but it remains one of the things that frustrates me in daily life. Now I am one of the messiest eaters I know (although the messiest has no physical disabilities as an excuse).

The most obvious manifestation of this difficulty is when I have spilled something without knowing, and the dried stain marks my clothes thereafter. I didn't want to spill food in the first place, and now I have a badge of shame that I didn't even know about, and won't see unless someone points it out.

There stains are horrible. I don't so much care about the spill, it's just something else to go in the wash, but I hate going out oblivious to food accessories on my clothes. 

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.

That conflict between my capability (sometimes I spill food, and can't see it), and my self image (I would not go out stained with food), seems irreconcilable. I don't want to accommodate becoming someone else, so I just have to wait and work until I get back to the ability to eat without spilling food. In the meantime, if you see me wearing food, let me know: I haven't seen it.

Tuesday, March 18, 2014

More to say!

No surprise to anyone, but I have more to say on the topic I hinted at in my last post, about shaking hands. Sadly, it is taking all my effort to go to the pool and post this, so y'all will have to wait until the bleak has passed.

Tuesday, March 11, 2014

Shaking Hands (Pun Intended)

A handshake is a significant social construct. Learning to shake hands as a young man was a defining process. Too limp, and you are effete, ineffectual or passive aggressive; too firm, and you are thuggish, an oaf or a bully. If your hands are clammy, you are a lost cause, doubtless cohabiting with the nameless horrors of the deep.
It is quite probable that most people have thought about this less than I did, but it's sure to have crossed everyone's young mind (and if it didn't, it should have). How you shake hands is the first tangible impression that you give, and it makes a difference. It is perhaps as important as being a good kisser.
So, it has caused me some distress that I have lost a measure of control over my hand, and consequently over my handshake.
When I was first dealing with the brain damage, I had very little strength in my right side, so I was acutely conscious that shaking my hand was like expecting a robust response from a towel; and at that stage there was nothing I could do about it.
Now, my hand and wrist are stronger, so if I haven't just been to the gym, where my grip on a dumbbell is often the limiting factor in an exercise, then I am more capable of delivering a proper shake. Except that I tend to miss.
Whether doubled or one-eyed, my vision is such that I have a hard time judging distance. Even if I make a good stab at the distance, my whole right side is bad at following instructions accurately: some of the motor control of the right side got hit. So, I'm likely to grip just fingers or end up in some weird contortion that probably signifies my intent to buy narcotics or cap someone.
You would be well within your rights to ask why I care. After all, am I not capitulating to the privileged hegemony of the able-bodied? Yes, I am. I want to make the hale people I meet comfortable with my disability and that means doing what I can to conform to the invisible, unconscious social norms that pervade the world. Like shaking hands.

Thursday, February 27, 2014

Stick it where the sun...

I have been known to dream of walking: just strolling, unaided. Not a very exciting dream, but still something beyond reach, for now. When I first had the strokes, I was a falling risk. Then I graduated to a walking (Zimmer) frame, which was ghastly. After a brief period with a quad-stick (also ghastly), I got a walking stick of plain wood.

The stick came with license to walk without company, and serves two purposes: it helps me support weight on the brain damaged and then atrophied right side (which is why I sport the stick in my left hand), and second, it provides a steady point of reference for balance. The first function gets steadily less important as I exercise, my right side grows stronger, and my brain relearns control of the muscles.

Two years ago, when walking any distance was hard, my physical therapist set goals for walking to the pub. I wanted to set the goal of walking that far, sooner, and without the stick. She was sceptical. With some work, I was able to walk at least that far, and sooner. I've just bought a new stick, though. 

My old stick had a split, the new one is a lovely dark chestnut one, with some heft to it. To get a new stick I had to accept that the rate of recovery for the two main functions of the stick is different. I barely need the stick to support my weight any more, but I still need it to keep my balance. Acknowledging that compensating for my lack of balance required the stick, was not easy.

What makes it easier is knowing that although I am compensating now, I do not expect to do so forever. It may be slow to do so, but I will recover my balance eventually. In the meantime, my new stick is handsome (thanks to the excellent Stick Man), and the one I get in June will be excellent, handsome and rather fancy.

Wednesday, February 26, 2014

Rehab, recovery, compensation

When a brain is damaged on one side, as is often the case with stroke, there are two routes to rehabilitation: compensation and recovery. I'm trying to compensate as little as possible, and recover where I can.

In either case, the goal is essentially the same: for the person with the damage to regain some lost function. For example, I have a tremor on my right side, my right side is also weaker and less coordinated, and I am right side dominant: this makes writing difficult and slow. (Typing, too, since I've been touch-typing for over 20 years ) So one goal of rehabilitation is to be able to write swiftly and legibly again.

I could compensate by learning to write with my left hand. That would not help with typing, but in time I could probably make my left hand as adroit as my right was, despite its ingrained gaucheness. I don't want to do that at all, and not just because it is likely to be a huge pain, and learning to write the first time was boring enough.

The path of recovery that I've taken instead means getting my remaining brain to assume the functions that the damaged (dead) bits used to (a lot easier for neuromuscular issues than cognitive ones). Given how tedious it was to learn to write in the first place, and that I already know how*, recovering my hand and arm function by writing repeatedly would be dull and not very productive. Writing is a relatively fine motor skill. Not as fine as sculpture, say, but finer than I am capable of performing without trembling.

To eliminate the tremor, I need to train my brain to use new pathways that activate the muscles smoothly, rather than rely on existing neural pathways that try to use absent brain matter, and by overcompensating set up the tremor. That means doing things slowly, even for my right side, which is already visibly slower than the left. All of which comes down to doing exercises in the gym that work the muscles that correspond to missing brain tissue, and working slowly, with attention to the form more than the weight and to not trembling.

Happily, it is possible (though likely harder) to recover after many years of compensation. So it is hardly the end of the world when I decide to 'just do' something. It is, however, very easy to slip into a habit of compensation when recovery would be preferable. A change of scene, going out of any familiar environment, serves well to remind me when I am 'just doing' more than I thought.

One of the shortfalls in many approaches to rehabilitation is the desire to get patients to the next place as fast as possible, ultimately to get them home a.s.a.p., where we become someone else's problem. In my case, although I met (just) the physical requirements of being able to wash myself and to get upstairs, my balance was so poor that I could not be discharged from hospital, since I remained a falling risk. In the UK, the physical requirements include the ability to make a cup of tea, and then to carry it. In both cases, while physical and occupational therapists might want a patient to recover, compensation is so much faster and often easier, that is the only option in the time or budget available.

This approach sets up a number of inaccurate and unhelpful expectations in the person who has brain damage. I believe in an honest approach, no matter how uncomfortable. Too often, the reality of recovery is concealed: it is possible, but it takes work, and it is often imperceptibly slow. 

But recovery is possible.

* Not guaranteed after a stroke: I met someone who had spent much of her life teaching kids to read and write, then teaching others how to teach kids, who lost the knowledge of how to write. I can't imagine how appalling that must have been.

Friday, February 21, 2014

Eidetic Memory?

Since having the strokes, I have enjoyed joking about some of the aspects of brain damage. It has been amusing (to me, at least) to jest that I don't remember names because of my brain damage, rather than the truth that I have simply forgotten. The ironic humor for me is that most listeners don't know if I am lying or not. I could be telling the truth, after all.

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.

Tuesday, February 18, 2014

Mind Matters

Brains are meat. Complex meat, but ultimately they are made of cells, fed by oxygenated, glucose-rich blood and as susceptible to damage or training as many other cell types. For example, when you train a muscle to stretch further, more than simply training the muscle fibers to extend further, you are training the stretch reflex in the brain to allow a deeper stretch. If the brain doesn't adapt at the same time as the muscle then you behave as though the muscle is shorter.

The mind is, according to many, harder to pin down, but I think it irrefutable that the brain is the substrate for the mind. It is easier, when practicing psychotherapy, for example, to consider the mind independently of the brain, but brain damage and psychopharmacology draw us back to the physicality of the brain, and the effect that changes to the brain have upon the mind. I think the converse is also true.*

The state of a mind affects the brain's behavior, that much is clear. When we're distracted, worried, or stressed, typically seen as conditions of the mind, we perform certain tasks less well; our brains work less well.  I contend that the mind affects brain (re)development in concrete biological ways. I think I'm living evidence that this is so, as is anyone who recovers from brain damage, whether from stroke, concussion, shrapnel, gunshot or any other cause.

There is a difficult line for neurologists to tread. On the one hand, recovery is possible in most cases if and only if a patient's mind believes that it is possible. On the other, even the most optimistic patient still has to put in a lot of effort over a long time to see results. I have tried to remain resolute, but I had little idea two years ago just how long it would take to recover. I think I have a better idea now, and it's a long time. 

Perhaps it is particular to stroke, or maybe it is just any brain damage that involves older people, but there is an infectious attitude of defeat to overcome. Add to that the depression that is a common result of brain damage and slow recovery, and it is difficult to break out of the pernicious state of mind that inhibits recovery.

The good news is that minds can, with difficulty, be controlled. We are conscious. We can make choices. We can recognize that the default despair is counter-productive. Above all, we can 'fake it, until we make it.' By doing so, we use our minds to control our actions until our brains encode that behavior as automatic. Anyone can do this. Those of us with brain damage must do this. 

* There is no inconsistency here with the belief of many that the mind has something like extra going on, call it a soul, divine spark, or what you will. I don't believe in anything supernatural, but my belief on the matter doesn't preclude that possibility.

Thursday, February 13, 2014

Sore Eyes For Sight

I wrote a while ago with an illustrated guide to how the world looks to me. That has changed recently. Two and a half years after having the strokes, I'm not occluding my left eye. The change is more dramatic for observers than for me: it looks a lot better, but it doesn't by any means 'fix' my sight. 

One of the lingering effects of my brain damage has been diplopia, double vision. My problem is not in the visual cortex (where knocks to the noggin can cause double vision), but in the muscles around my left eye. My brain might want to have my eyes line up correctly, but the neurons that controlled eye movement are gone.

Worse, as other neurons take over the tasks of activation, the muscles themselves have atrophied. My left eyelids have not worked for over two years, and I can feel the difference: they are thinner. So, even as my brain recovers heretofore lost function, my body wants to make life difficult.
To make matters more fun, my double vision is diagonal; there is both horizontal and vertical displacement of the images from each eye. (This might make more sense when you know that three pairs of muscles control the movement of each eyeball, not two nor four.) Add in the oscillopsia in each eye, with independent period, and it's a laugh riot.
What has changed is that my eyes are now stable enough that it is now worth correcting the vertical displacement instead of occluding the left eye. I have double vision, still (and, honestly, that sucks harder than I can describe), but it is more-or-less level. It turns out that vertical displacement is a lot harder to manage than horizontal, a fact I would have been interested to learn two years ago.
Experiments have shown that most people cannot tolerate a vertical displacement of 1 but it takes a horizontal displacement of 12* to have the same effect. This helps me understand why the diagonal diplopia was so debilitating; the Fresnel lens I'm wearing corrects for 3 or 4. I don't remember which. The correction is not 1, it's taken over two years to get this far, and the prism lens will not change for another year at best, so whether it's 3 or 4 doesn't really matter.

The downside, since there has to be one, is that the muscles around my left eye are often working harder. That's a good thing! The headaches that ensue, however, are not.
My double vision is better, despite what the expert said, because I have worked on it every day. That is boring, difficult, and imperceptible day by day, but it is necessary. My vision is still objectively terrible, but it is improving.
* No, I don't know what units are being used, but the difference is an order of magnitude. 

Sunday, February 9, 2014

A Drop in the Economic Bucket

This will not make sense if you don't live in the USA, or are unaware of one of the most extraordinary features of American life. Drug stores (pharmacies) sell tobacco and beer. If you grew up in the USA, that last sentence is deeply weird in the rest of the world. It's all part of what makes the USA exceptional, I guess.

When I get back to the USA, I shall change drug stores. Rite Aid has the closest pharmacy to me, and I would have switched long ago, since it is the slowest pharmacy, and the slowest drug store in the universe.

The next closest drug store to me is an additional long block away. That might not seem like much, but walking one more long block each way is a lot of work for me. Walking, and staying balanced, is still substantially harder than swimming.

What's prompted this change is the fact that CVS, the competing drug store, has announced that it will stop selling tobacco. The company will lose about $2B, which is less than 2% of their profit, but they have decided, as they treat more and more consumers with heart disease, high blood pressure, and other diseases linked to tobacco use, that the right thing to do is, in fact, the right thing to do.

I know that small incremental changes add up to large, visible effects. There may well be cases where individual action is good for nothing (although I can't think of one), but this is certainly not one of those cases. In a way, as in neurology, so in economics: I shall be making my own small difference.

Wednesday, February 5, 2014

Small Changes, Big Difference

One of the difficulties of neural recovery is that it is excruciatingly slow. The moments of sudden or dramatic change are behind me, I suspect, although there's one area that could mean a big difference. On a day-to-day basis, though, and I have no choice but to live with myself daily, I see no change.

Of course, the reality is different: every day there are minuscule improvements in my brain, which means I'm slightly better at walking, or talking, using my right hand, or my left eye. Unfortunately, they're so tiny that they are practically immeasurable. I mean that specifically: it is not practical to measure the changes. I don't have an fMRI handy, and I don't want to spend time each day hooked up to one, thanks.

Being unable to see any progress (even when it's happening) is a bit of a downer. More often than not it is frustrating to the point of depression. That's when I'm most likely to disappear down a hole of video games and comic books, only to realize three months later that I've swelled by 40 lb. and it gains me little to have epic mastery of Mass Effect and fearsome skill at Dwarf Fortress. (It doesn't gain me nothing in recovery terms, but more on that anon.) I wish I were joking, but that's precisely what happens when I suddenly go quiet for a while. I have not run out of things to say, believe me.

What I have tried to do, instead, is measure things that are related to, and promote recovery, but whose results are not directly correlated with my brain working things out. Gym and pool exercise is measurable, and exercising regularly has other benefits, like living longer, and having your later years not be so miserable.

Nothing is as effective as time, though: a change of environment to somewhere I've been before, after months away, throws the changes in my ability into relief. It may be slow, but improvement has happened, and continues to happen. The trick to staying sane is remembering that change, however glacial, is constant, and that it's up to me to make sure it's change for the better.