Moving Pictures

Recently I've seen Hunger Games 2, Thor 2, Hobbit 2, Filth and last night, The Night of the Hunter. I'm lucky to live very close to the American Museum of the Moving Image, and a 10-screen cinema. The museum's website is shit for mobile and accessibility by the way, but the movies are good.

One of the features of my brain damage is that some level of critical faculty, or some intellectual processing is absent. So, I respond to things rapidly and honestly. This often means that I am easily manipulated by movies, but has another side effect: I can't rationalize a movie I'm finding dull with intellect.

As a case in point I was very engaged by Catching Fire, Thor and Filth least, perhaps the Thor movie, but Chris Hemsworth is yummy. I was so engaged by The Night of the Hunter, which has child actors who could be replaced by wooden blocks with little loss, that I am still thinking about it and its imagery today.

I thought the Hobbit was a bit dull. For all its flair, stellar effects and so on, I was bored. More Smaug, less New Zealand, and get a sodding move on.

Of them all, if you're looking for a good movie to take tweens and up to, then I would recommend The Hunger Games: Catching Fire. While you're there ask yourself who you are most like in real life. Snow's granddaughter? Effie? Senna? Be honest. I dare you.

The effect of the damage is interesting; it makes me a pretty cheap date: if a movie's well enough made, I will enjoy it regardless. It does have something of an emperor's new clothes effect though. You can't hide boring behind glitz. 

I don't hate the snow, really.

Snowfall is a sign that my world is about to close in. I can do about a block radius, if I'm lucky. I live on a good block, so I can get to the gym or Starbucks, the pool, and the American Museum of the Moving Image, or the cineplex, usually within a day of the snow's arrival.

The subway is harder to get to at two blocks, especially since those bastards at the Salvation Army have never, ever cleared the snow. Once I'm on the subway, I'm probably going to be fine if I'm headed to Manhattan.

Walking any distance is difficult, tedious, tiring and frustrating. I'm in the coffee shop right now because it would take so long to go the one block home that my coffee would get cold. I'm not sure I could keep my balance while holding a cup either.

There's little point in asking anyone what the snow is like, either. They don't see the same things that I have learned to. Light snowfall is trivial to most, but hobbles me even more than I already have been.

I don't hate the snow, I still think it can be lovely, still love the idea of it. I despise, instead, what it does to me. 'Tis the season to be stuck at home, making rare forays into the world, remembering winters past. How jolly.

Spin The Cripple

My balance is still terrible. It takes conscious thought and some effort to just stand still, which of course I can't do. So it should be no surprise that the problem of relearning equilibrium has vexed me; I am heartily sick of being unstable.

As children we are wired to learn things that are so automatic that we don't even notice them as adults. Things like being able to slot blocks into holes, looking up when we walk, and being able to stand. Unfortunately adults are not wired to find learning such simple things interesting or fun. Such is life.

One activity that children seem to delight in at a certain age, and then no longer, is spinning around until dizziness overwhelms them. They often then fall over, regain their balance, and do it all again.

I wonder if that isn't training the brain to process the signals from the inner ear, and thus developing balance. Perhaps the key to fixing my balance is spinning like a dervish until I fall over. Of course, children have a much lower center of gravity, so this is just another reason to get access to a rubber room.

Snow day

I used to love when it snowed. The added inconvenience was worth it for the feeling that adventure and mystery had brushed the world and left a snowscape.

Not so much, now. I'm reduced to a near crawl by even light snow, and I'm pretty fed up with being the slowest guy around. Today, I am sick of the effort, conscious effort, it takes to even stand up without falling over or holding on to something.

All around are the able, regular people who can just stand idly with no thought. After more than two years it is hard not to hate them all. Harder still not to hate myself for a brain that is damaged, a body that won't respond or the indolent life that lead to a slow death.

Perhaps it's just the time of year, and I should go live by a beach.

Two Years, Not Dead

It has been two years to the day since my first stroke. It should come as no surprise that my life has changed substantially since then. I spent a week or so in intensive care, over a month in an acute care ward, about six weeks in in-patient rehab (in the UK) and I've been recovering since then. Sometimes, I've had help, but much of the time, I've been on my own. If you can climb stairs and make a cup of tea you're alright, right?

Perhaps surprisingly to those who knew the younger me, I'm not at all bitter. Living with brain damage that left my cognition intact has made me a better Buddhist, a better person maybe. Life is harder than it was, but for all the frustration and inability, more joyful. I have had to re-evaluate many things, and make difficult choices about my priorities. 

One of the hard choices is between compensation and recovery: how much should I adapt and adapt my environment to make life easier, and how much should I persevere, trusting that I am slowly, imperceptibly improving. I have heavily favored recovery, but I am doubting that choice a bit. For example, I could have learned to write with my left hand by now, but have been adamant that the tremor on my right side will abate, and I will write 'normally' again. All things change, though, and as I enter the third year of my new, disabled life, I'm thinking about change.

To the details! As a reminder of the deficits: left side facial palsy, right side weakness, right side tremor, balance and vision. Here goes (with a bonus at the end):

Left side facial palsy

This is slowly lifting, although the corner of my mouth is stubborn. While my face is evidently afflicted, it's not as droopy as it was. I still can't close my left eye fully, but it's not a problem sleeping, nor keeping it lubricated. The latter is worst at a movie, because I have to roll the eye consciously to keep it moist. Acupuncture has been particularly good for stimulating my face.

Right side weakness 

My right side is still weaker than my left, and it's most obvious in the smaller, stabilizing muscles. They're hard to get at, and the pace at which they recover is governed by the neurology of the brain, not so much the effort at the gym. Gym time is sine qua non for recovery, but if it was all I needed, I would be fine by now. One of the signs that muscular control is returning is that my right foot thumps less. I don't quite have feline grace and poise, but it is arguable that I never did. 

Right side tremor 

I still have it. I don't know how to eliminate it. I'm trying to avoid things that reinforce it, but it is pernicious and persistent. It is also surprisingly debilitating and quite frustrating. The tremor is one of the things that really challenges my sense of being a whole person. 

Balance

This still sucks, but it is improving. I look a bit less squiffy walking down the street. It is, as I may have mentioned, hard to tell whether my equilibrium has improved at all, or whether my improving muscular control means that I manage the wobble better. I experience a fairly constant swaying backwards and forwards, which does lead to a few hairy moments now and then. This is another thing that I don't really know how to fix. I need to get my brain to acknowledge that it's not working correctly, first, and I think that's tricky for an adult brain. 

Vision

Well, this is fairly shitty. I tend to avoid thinking about how bad my eyesight has become because in familiar contexts, I'm smart enough for my vision (in the brain) to compensate. The double vision, which I think is in the oculo-motor muscles, remains, and although medical experts say that my vision won't change at all in the future, I think they are muscles. They can be worked. The work will lead to new neural connections, and eventually I will be able to see a single binocular image. It is possible that the tiny improvement I see is a delusion, but it is one I'm clinging to. 

Cognition (bonus!)

I'm coming to think this has been affected after all. Not in any huge way; I'm not a drooling imbecile, but in small ways. For one, I have forgotten things in the last two years in a new way. Then, there is the juvenile glee. Perhaps it is because I have let go of some things, perhaps it is brain damage, but many things fill me with excited happiness in a bigger way, and in a rather child-like way. As cognitive effects go, this one is pretty good. It does mean that I troll a bit more often, and more of my jokes are really only funny to me, but being laughed at for laughing with is not the end of the world.

So, two years on, that's where I'm at. There's been undeniable progress in the last year, but there is still a long road for me to travel, and the going is slow. I probably forgot stuff, so if there's anything you are curious about, ask away.

Reading For Pleasure

I learned to read when I was 2: my Mom was pregnant with my younger brother and bed-bound for much of the pregnancy. By the time I was 6, I could read a story-book upside-done, to the "little" kids, so they could still see the pictures. I read The Lord of the Rings when I was 10, after being told i was too young; I brought my Dad's volumes to school, since I couldn't take a copy out of the library. After that, I was allowed to read anything I wanted. 

In the same library, before I was 13, I was the first person to read the multiple volumes of the "Tales of 1,001 Arabian Nights" that had been gathering dust for about 80 years. I know, because I had to cut some of the pages (after I learned why some of the pages needed cutting, and why it was OK). 

By the time I was 17, I would re-read The Lord of the Rings in a weekend, though not sleeping much on the Friday and Saturday nights. I didn't know it then, but the escape that book offered was a coping mechanism of sorts. On a long train journey from Bangkok, I read War and Peace; I had to spend a few hours finishing it (and I skipped the second epilogue, which is too obvious if you read the book in one sitting). 

As an adult, I would read light fiction in an afternoon, anything more complex in no more than a week. Interrupting me while engrossed in a book was a good way to shorten my temper, if not make me lose it altogether. Books were a pleasure to be savor end and relished. I was almost never without one.

I've read Dickens, Chaucer and Milton, but not Joyce or Spencer; Tolstoy, Chekov, Solzhenitsyn and Dostoevsky, but not all of their great works; Rousseau, Diderot, and de Sade. I have read reams and reams of 'junk' some of it good, some of it utter crap, but I have stopped reading very few books in my lifetime. I own thousands of books, and have given away or left behind thousands more.

So, I think it is fair to say that reading has been a significant part of my life. 

That all changed when I had the strokes. I've written about and illustrated the visual deficits before, but never really detailed why they make reading so much harder. The diplopia doesn't make a lot of difference, since I'm occluding one eye. However, with One-and-a-half Syndrome it means that now I move my whole head more than just my eyes.

The biggest challenge comes from oscillopsia. Because my eyeballs move up and down rapidly, it has become very hard to read a longer line of text unaided. Larger text (available from libraries or eReaders) is less useful than greater leading (not usually an option), although it is a bit better. Small, dense print is effectively illegible.

Unfortunately, reading is now much harder work than it used to be.  Before, I might comfortably read a quarter of a book at night, now I'm lucky to read a chapter before becoming too tired. Audiobooks offer a solution for new books, but my pleasure has been in the reading itself, and hearing someone else's voice interpret text is no fun.

With either an eReader or an audiobook, there is also the problem of the thousands of books I already own, and can't afford to replace in other formats. Reading one of the books I've kept allows me to experience the world in a particular way, to enjoy a certain tasty idea or be thrilled by crunchy repulsion again, or just to find something new there that I hadn't perceived before.

The difficulty I have with reading is all about the physicality of the process. It will improve with time and practice. For the moment, though, it pretty much blows, and I've seen no way to restore what was lost. It's one of the areas where my stubborn insistence on recovery over compensation costs me most. TV isn't as good. 

Recovery Blues

About two weeks ago, I swam 4km, without pause, in just under a couple of hours. I was pleased with myself. Then a conflation of circumstance provided a good excuse not to go to the pool or gym for about two weeks, setting me on a vicious circle that I will try to illuminate. Our demons have less power over us in the light of day.

There seems to be no escaping the fact that recovery is so slow most of the time, that it feels as though I'm making no progress. Nearly two years after the strokes, I feel, if anything, in a worse place physically than a year ago. This is objectively false. A year ago, I could not swim for two solid hours. That doesn't alter how I feel about it though: my brain is pretty stupid and impatient. Unless I actively work to contradict this feeling, it reigns. 

Then there the deficits that are most debilitating, whose changes are so slow that I have to wonder whether I'm improving or delusional. Physical strength is relatively easy, wobbling eyeballs and shaking arms are hard. I have to sustain a high level of trust that these things are improving, and will continue to do so, although there's no way to verify that there is any change. 

So, I'm already facing a struggle up a slow hill. Add in the unfortunate reality that it takes about three days of rest before I have deteriorated enough physically to notice a reduction in function, and the struggle is Sisyhpean. The memory of how easy things used to be, the casual eptitude of the people around me is Tantalizing. To stretch this analogy, whenever I feel like I have accomplished something, the eagles of depression come and feast on the liver of my optimism. Prometheus-like, it regrows, but not overnight. 

When I take a longer rest from exercise, as little as a few days, I don't want to start again because my progress is so slow, and so easily reversible that it feels pointless. Worse, I know that starting again means never stopping. Not, at least for more years than I can effectively compass. There is no end state. I can tie my activity to other goals, but recovery itself is too elusive to have meaningful expectations. 

The only refuge, it seems, is to be bloody, bold and resolute. Rationally, I know that I am better now than I was a year ago, and so I must let Reason dominate while Emotion endures. Boo-hoo.

Connections

Twelve years ago, I heard the first plane hit the World Trade Center in New York with my own ears. I smelled pulverized steel and people with my own nose. I felt the street shake as if an earthquake had struck when the first tower came down with my own two feet. I was there, and it was a terrible day.

What has it to do with recovering from brain damage after a stroke, though?

In the hours and days following the attack, my horror and sorrow were tinged with optimism: the tragedy was an opportunity, a chance at introspection, a shock that had a chance to change a country's way of thought. A moment to ask why? and to make the connections that would preclude another such attack.

Since having a stroke, I have been happy to make connections that I might otherwise never have made. With the Eqyptian-American guy I know whose father has had a stroke, with devout Christian midwesterners that I have little in common with but brain damage and most of all with friends from my past that have turned out to be good friends still.

I've also connected briefly with other stroke and brain injury sufferers talking at (and participating in) the ASPIRE program, and I hope that this blog is useful or informative for those who've had a stroke, or their carers.

It's not enough, though; I want more. I want to be able to have a conversation with someone who has first-hand experience of brain injury. I want to share the stupid weirdnesses of not having a limb respond when you think it will with somebody who has empathy, not sympathy. I want someone who gets it to share war stories and bore stories with.

So if you're lurking, talk to me.

Also, all you other people, what do you want to know? If you're too shy to ask in public, I'm not too shy to answer and my email address is my first and last names @gmail.com.

After 9/11, I learned some Arabic, and after I had a stroke, I kept talking; but I want to converse. I don't love the sound of my own voice that much.

For the record, I wrote about my experiences on the day.

Sabotage!

On Tuesday, my roommate left for Gen Con, where he'll be showing off his excellent new game, Torchbearer, and hanging out with a load of people I would love to see. I'm a little jealous, but quite glad I am not there because right now I can live without the punishing schedule and lack of a gym. 

I have been exercising more again, after gaining a bunch of weight when depressed earlier this year, and fighting to remind myself that "good enough" is no such thing when it comes to my recovery. It gets easier to accept compromise and not recovery, so I have to actively remind myself first, that I want to recover physically as much as humanly possible, and second that such a recovery only happens if I take exercise. 

To build up my overall endurance, I swim laps of a pool that is miraculously on my block, but is a bit skeevy. Fellow New Yorkers will know how unusual it is to have a pool right there, so the skeeve is a minor hindrance. I go to the pool on weekdays, typically, and to the gym on the weekends. Since swimming in a straight line requires concentration, my vision is poor and the pool has enough chemicals in to be murky, those are the times I can go and hope for fewest other people to collide with.

Anyway, on the Tuesday, I was primed and ready to go to the pool, when Thor set off, and a naughty thought popped into my brain: I could stay at home, not go the pool, and nobody would ever know! Never mind that this is not true, because I log all my exercise on Fitocracy, and that it makes no appreciable difference to Thor whether I swim or not, there was the delicious temptation to get away with something.

It didn't matter that I would, in the long run, suffer for not going, nor that after the first half dozen or so lengths I settle into a pleasant rhythm; the opportunity to pull a fast one was almost irresistible. Almost, but not quite: I told my brain to go screw itself and went to the pool. 

Unfortunately, my brain had a few tricks lurking in the grey matter. When I got to the pool, I discovered that I had left my fancy new swimming watch behind. I went and got it. Back home, I was again tempted to be all huffy about being jerked around by my brain and just not go, but I quashed the temptation, and set off again. 

I got about two steps out of my front door, before realizing that my brain had made one last desperate attempt to skive off: I had left my walking stick behind. Happily this all had the reverse of the desired effect: I was more determined than ever to go swimming, and I did. 

My brain has had the last laugh, though. This morning, I took my time getting up, and faffed around on the Internet, until my brain gleefully remembered that I have an acupuncture appointment today. There's not enough time to go swimming and to make it to happy fun needle time. Bugger.  

Taking Fatigue In My Stride

Last week, I worked quite hard: I swam on the five weekdays, for a total of a hair under 10km, and then went to the gym at the weekend. I went to acupuncture twice, and managed a few social engagements as well. After each bout of exercise, I felt 'good' tired; my muscles felt like they had done some work, but not sore. I might be a bit achy the next day, but I hadn't overstressed anything.

I have to watch my overall level of tiredness as well as, though. If I do too much on one day, then I'm often much less effective the next day, sometimes to the point of being a total spud.

Having to watch my fatigue is often counterintuitive, because I'm gauging neurological tiredness, and we've evolved to be better judges of muscular states. Pumping a bunch more adrenaline out is not going to help me escape the hungry lion, if it's my brain that is not going; my legs are still going to flail about.

The problem with taking too much rest is figuring out how much is 'too much'. If I don't stress my system just the right amount, then it will take longer to recover. I am already comfortable with the notion that it will take years of work to get better, but if I can shave months off that time, I want to.

So, yesterday, on Monday, I had to decide whether to go swimming or not. It was a crappy rainy morning, which definitely influenced my mood, but rain often makes the pool less busy. Muscularly, I was a little sore, but I expected that after working out my upper body on Sunday. However, I felt tired yesterday morning, and decided not to go, full of misgiving that I was just being lazy and self-indulgent. I spent much of the day feeling itchy to go swimming, but tired enough to take a short nap.

It was the right call. I'm sore today from the Tui Na massage I had yesterday, but I just swam two and a half kilometers, and I feel 'good' tired again. Sore, but ready to go again tomorrow. It wasn't the first time I've had to make that call, it wasn't even the first time I made the right call, and it won't be the last. I'll be making those calls for years to come. I just hope that I get a little better at balancing efficient recovery with living a real life.

Teardrops Keep Falling

A single tear rolls down my still-slack cheek, and falls from my poorly shaven jaw. I wipe away the telltale track swiftly; it wouldn't do to be seen to weep in public.

Am I mourning the loss of mobility, of vision, of ability? Do I constantly cry inside at my infirmity, these single tears the only expression of a strangled emotion kept buried? Perhaps I lament the boy I was, the man I have been, and the shadow of humanity I have become, is that what these tears represent?

No. Both my eyes tear normally, but my left eyelids don't close fully yet, and so the natural lubricant of the eye—tears—accumulates on the left and sometimes rolls down my cheek. I make sure my left eye is moist enough, but other than that, these drops are a minor inconvenience at worst. That is all.

I may have regrets, but I am far from unhappy. Sure, there's a lot of hard work ahead, compounded, no doubt, by hideous bureaucracy, but life is working hard, and anyone who tells you otherwise is deluded or lying. 

Taking Advantage of the Stupid Brain–an Exercise Hack

A lot of recovery focuses on how amazing the brain is, how it is astoundingly good at picking up the slack left by damage, and how resilient it is. To be this way, the brain itself has to be stupid and lazy, at least when it comes to self-aware animals like us. If we're cunning, though we can use some of that stupidity and laziness to our advantage.

The brain is evolutionarily geared to prefer activity that takes least effort for greatest reward. Throughout our lives, it tries to make our actions, in particular, as efficient as possible. Not only do we use less energy that way, but we end up using fewer neurons for things that we do repeatedly, and have more brain left over for complex, abstract thought. If you have ever got to work but don't remember the coffee you drank on the way, you've felt this.

This process can be seen in children when they go through adolescence and prune an amazing number of neural pathways to leave optimal paths, and the clumsy duckling becomes an elegant swan. It's what is really going on when we talk about "muscle memory"—when a complex sequence of physical actions is neurally optimized as an atomic unit that, once initiated, completes without conscious intervention.

It's impossible to decide consciously which path is going to be optimized, and which is going to be discarded; repetition tends to be the key, at least for physical activity. How do we determine, though, what habits of mind we can form?

Although the impetus to exercise was clear to me, a year ago, it's not so clear now, not so immediate. Put another way, the small incremental gains I get in function are proportionately less significant, so I appear to be getting less reward for more effort. Put yet another way, it's gotten harder to go to the gym and pool.

So I tried a hack on my brain, to see if I could make going to the gym (and pool) easier. I've already made the going as efficient (and energetically cheap) as possible, so the idea was to front-load the reward. Typically the benefits of exercise that we can sense, and the brain can operate on, come too late for us to associate the action of going to exercise with the reward of having exercised. The hack was simple: any time I thought about the action of going to exercise, I would then say to myself, with a mental tone of glee, "ooh, goodie! I'm going swimming tomorrow!"

That was it. I didn't have to mean it, and I frequently didn't, I just had to think (or say) it, no matter how artificial. That was the totality of my experiment.

It worked.

I was far more likely to actually go to the pool or gym, after I had thought "yippee! gym tomorrow! and legs, I love legs!" (I don't), the night before. I'm hoping that in two or three years' time, I won't have to say my silly fake mantra, because my brain will have associated the benefits of the exercise with the (short and painless) drudgery of getting to the exercise. Until then, "Yay! Skeevy pool tomorrow!"

Fraudulent Brain Damage? No Such Thing.

When I was in England at the end of May, I went back to the ASPIRE group as the alum guest speaker. It was the day after I had flown in, but I didn't let the travel affect me, because I think the group is really good, does important work with people who've had strokes, and they gave me a chance to run my mouth, which is always welcome.

Before I started talking, though, one of the group's members, a woman about my age escorted by her mother, said that she felt "a bit of a fraud" attending the group. She had had her stroke quite recently (like many in the group) and had not been hit very badly: she suffered some left-side weakness, and that was it. The worst thing for her was that she got tired knitting, and could only wield the needles for short periods. Compared to the people in wheelchairs, she was fine and dandy, she thought.

Soon after I joined Fitocracy (and started the "stroke recovery" group there), I found a group for "people with disabilities" and even though I did not consider myself disabled, I joined it. Almost at once, I posted to the group that I felt like "a bit of a fraud" joining the group because I expected to recover. As if, somehow, the possibility that I might one day recover disqualified me. I was going to the gym regularly, after all. 

Over a year later, I don't have that problem any more. It is going to take me years to get better, and there are some things (vision, balance) that may never truly recover. In the meanwhile I am disabled. I am not making shit up. I am not a fraud. I worry that I say I can't work, but I write this blog, don't I? I make funny on the Internet, don't I? I can play games and read comics can't I?

Then I remember that it takes hours to write blog posts, and far longer than it once did, to read the context to make the funny. I recall that I read comics because I have to read and even novels are damnably hard work. When I play video games, there are whole classes of games I can't play, when I play tabletop games, I can't run them weekly, and I can barely sustainable length of a normal session. 

So, although I joke that I am a welfare queen, I am profoundly glad that the social safety net has not failed me, at least. Both because it will be several years before I take out what I put in, but more because it should not fail anyone. That's part of what it means to live in a civil society: we help each other out. Put baldly, it also makes economic sense to afford me the recovery time to become a productive member of society again. Maybe not everyone is fiscally worth it, but that's the cost of coming down from the trees and deciding to band together to build a society, instead of just flinging poo at each other. 

In the end, I told the knitter that she should not feel any kind of fraud: she had brain damage and it was affecting her life. Knitting was symptomatic, but useful as a metric: she should use it to measure how long she can now knit, each day, and celebrate as that time gets longer, gradually or in spurts. She may not be as badly affected as many who get brain damage from a stoke or otherwise, but it's a mistake to trivialize your own damaged brain; if you are to recover, you must be honest with yourself.

It is hard to be comfortable with the idea that I am damaged, perhaps permanently, and still sustain optimism that I will recover. It's harder still not to consider myself diminished, when in some respects I clearly am: trivially I couldn't run to save my life from zombies. One thing I am sure I am not, though, is a fraud. 

The Londoner is Falling Down, Falling Down, Falling Down.

A few weeks ago, I got the subway to the acupuncturist, as I usually do once or twice a week. (The fall I mentioned yesterday was two days ago; I still have the sore butt to prove it.)

I used to read on the subway; in fact I liked to read pretty much everywhere. Nowadays, though, reading is hard work and slow, and I find it too frustrating on a short trip. Longer trips, I often have a graphic novel or manga with me, because I find the small chunks of text are easier to read, and of course the pictures convey a lot of information.

Instead, though, I was solving a (British-style) cryptic crossword on my phone, switching between Crux and Chambers as I needed, and becoming thoroughly engrossed in the puzzle. I wasn't paying enough attention, because suddenly it was my stop, so of course I got up in a hurry and fell over immediately, limbs akimbo, stunned for a moment, then chuckling a little.

Someone helped me to my feet, someone else made sure the door didn't close—at my prompting; I'm a New Yorker after all—and while I hustled to hobble out onto the platform, I reassured everyone that I was just fine. I was fine, too; I had almost no bruises and was pretty amused by making such an ass of myself. 

There's a qualitative difference between my two recent falls: on the subway, I had been so engaged with my crossword that it did not occur to me that I couldn't just stand up without falling over; I forgot that I can't do that any more. In the gym, though, I failed at standing up and staying standing. I was trying to be able-bodied, and not succeeding.

I don't mind forgetting that I'm a bit crock now and then, but it's more shameful (for small amounts of actual shame, it should be noted) to fail in doing something that I can now do, but is difficult. My self-image is so tightly associated with being able that I feel some (absurd) shame about my disability. 

Maybe Pride, Definite Fall.

My walking improved over the last day or so. Not hugely, but enough for me to notice; some connection has been made in my brain between the balance part and the part that controls my right leg, hip and foot. As happens frequently when I've made any sort of progress, I promptly fell over. 

It was the first time I've fallen in the gym, and it was fairly spectacular. I was mere inches from sitting heavily and gracelessly on the bench, but instead hit the floor with two 30lb dumb bells in tow. My pride was far more hurt than I am, especially since there were people around (at 8am on a Saturday!), who helped me up and racked the weights. The help chafed but was welcome, because the surprise of falling on my ass was a bit of a shock. Later, I would be lifting heavier weights, but the amount of metal is less significant than my internal (im)balance. 

Strangely, it was a sort of relief. One of the criteria for my current inability to work is that I can't carry a (light) weight around regularly. I claim this and yet I go to the gym and lift weights; surely I'm lying? The fall was an accident, but an ample demonstration of what happens when I don't concentrate all the time that I'm carrying anything. Going to the gym is tiring both because I'm working out, but also because I have to pay attention all the time.

Happily, the rubber floor in the free weights section saved me from all but a bruised behind, and if I was a bit pleased with myself, that got put in perspective. 

A startling (re)discovery

Back in the UK, I was drinking a mug of tea (as you should, in the UK). Since the stroke, using my right hand with cups or mugs has been awkward, and I didn't really understand why except the old fallback of brain damage. "Brain damage" is useful: it explains a lot in a way that doesn't beg further questioning, but it can be counter-productive when it stops me examining deficits in detail.

As I picked up the mug with my right hand, slowly, controlling the motion to reduce the tremor (and get more tea in my mouth and less on the floor), I watched my hand and arm perform an action that has been automatic for about 40 years. That was when I noticed that I wasn't doing something that should have been automatic: I wasn't articulating my wrist at all. Try it: raising a mug without moving your wrist is awkward. Here was a key to being a bit less of a spaz in public. 

This offers me some more insight, or confirms what I thought, about the brain damage I have: as well as affecting some muscles directly, I've lost some of the learned components of complex movements, like picking things up, or walking. I suspect this is where the tremor originates. To simplify: one part of my brain has the intention to drink some tea, and devolves the task to other parts of the brain to make the movement happen. They, in turn, devolve further, and ultimately direct the muscles to move.

I've killed off some of those intermediate bits of brain that handle the automation of the complex muscle motion, so a higher layer of abstraction has to hustle to control the muscle directly, overcompensates and overcorrects in turn causing the tremor. If I concentrate on a deliberate quality of motion, I'm using other parts of the brain, engaging the musculature more actively, and have less of a tremor. 

Back in the U-U-UK

For the first time in a while, it's good to be back in the UK, where the weather is better than expected, the pool is a billion times less skeevy, and they know how to make sausages properly.

I have a ton of things to write about—traveling, ASPIRE, the gym, stem cell research, and so on—but that will have to wait: I've been to the gym and now I'm eating sausages. What I will say is that it's good to be back after 9 months, when the tiny daily improvements have added up. 

42

The meaning of life, the universe and everything still eludes me, but it is perhaps a cosmic joke that I had my strokes on the 11th, not on the 18th. If I had them a bit later, then I could tidily package a monthly update with this birthday one. Would it have killed me to wait a week? (Let me answer that: probably.)

It's weird to be turning 42 when I feel like I should be only 41. I remember my last birthday, and the first year of recovery, but perhaps because I spent almost a year somewhere other than my home, that year feels somehow unreal. Robert McCrum's book about his stroke is called "My Year Off," and I get it; it feels like that year didn't happen, while it so evidently did. There it is, though: I'm a year older, which makes me 42. 

Things continue to improve. It's slow, but really only to an adult mind. A friend had a son within a few weeks of my strokes; he's a toddler now. It's taken him this long to get his muscles sorted enough that he can sustain bipedal balance with his arms outstretched and occasionally falling over and bumping in to things. I'm at least on par with that, if not ahead. I recently met a 2-year-old, and he was clumsy with his food (and rather shy but with a delightfully impish mien), much as I am still.

One difference between me and infants is that we perceive time differently: I'm more aware of it (although that will change in a few years). Another is that children are driven to grow up by their biology. Consciously or not, they see what adult bodies are capable of, and work on being able to do the same things. They want to learn how to be dextrous enough to do buttons up easily.

For me, though, there's less of an implicit imperative. I have to want to improve as well as put in the hours of work or I'll will stay more or less the same. One of the terrors of the disability insurance process is that it says to the disabled person "this is what life is now". It becomes easy to forget but that it is possible and that it is necessary to recover.

Anyone reading this blog will know that I want to recover, but if I forget that, then I'm all right. I have an income. It is quite possible for me to be comfortable, and stay comfortable until I die if I do not improve. That is the trap. There is no counseling associations with disability insurance: nothing to encourage you to recover, merely a date for reassessment. It would be easiest not to work hard, not to improve substantially, to stay more or less the same, and in a year's time get paid again.

I am happy to say that once again I am rejecting the alternative. It has been a difficult start to this year, or even a difficult six months, but that will not stop me. I am going to get better. Since that means doing the hard work, I am going to do the hard work. The Social Security benefit I received gives me the opportunity to recover. An opportunity I would not have if I was trying and failing to work.

Inaccessible Websites Suck

Technology should be empowering. Particularly for people with disabilities, technology should be enabling access that was hitherto impossible or very difficult. Unsurprisingly, some technologists are dickheads, and wouldn't know an accessible websites if it slapped them in the face. More surprising is that some of the least accessible websites are ones that you would expect to have got this figured out. Like Rite Aid, for example.

I would expect Rite Aid to have a website that was easy to use for people with disabilities, particularly the visually impaired. It should be easy to indicate to the website that I have difficulty reading ability and small pieces of crap information selling me things. If there is one I haven't found it yet. Instead, renewing my prescriptions is a miserable chore. Perhaps it is too much to ask, that a drugstore should focus on getting prescriptions filled before it tries to sell you Halloween crap; evidently so.

Never mind that the workflow itself simply does not work. Their website is focused on selling you things that are not the drugs that doctors have prescribed for you. It is not sufficiently tested, and makes baffling choices and shows a mixture of incorrect and simply absent information. I used to find this irritating and inconvenient. Now, however, I find it infuriating and almost impossible to navigate. If the Rite Aid weren't extremely convenient — it is only a couple of blocks away — I would go to another pharmacy already.

In 2013 it is totally unacceptable to have websites that don't work and that don't at least have accessibility options clearly available. If you want to know whether your website works for people with visual difficulties, just ask and I will be happy to come and tell you what doesn't bloody work.

This Is What Taxes Are For

A year ago, I was thinking about retraining as a physical therapist. If the people around me knew how insane that idea was, they very kindly didn't say so. That was before I was able to even acknowledge, let alone accept the extent of the visual damage I suffer or that if my balance is going to improve substantially, then it is going to take a long time. The brutal reality is that I have great difficulty reading (these posts are off the top of my brain damaged head, never edited) and I fall over in my own home. I usually catch myself and have yet to hurt myself. but I do keel over.

Yesterday I got a deposit in my bank account that strongly suggests (I'll wait for a letter, thanks) that my application for Social Security Disability Insurance was accepted. This is undoubtedly a good thing on a practical level: I don't have to worry about my rent every month, or how to  pay for acupuncture; I can take the "Donate" button down, and I can pay for my own brunch on Sundays rather than accepting the great generosity of good friends. So, for sure, a Good Thing.

On the other hand though, it does mean that people whose job it is to filter out lazy scoundrels, which I was afraid of being, have agreed that yes, you can't do any work worth doing. That is a rather sobering thought for someone who always thought "at least I can get hired to do something, after all I've worked at Goldman Sachs and Google so somebody should want to hire me."

I am eligible for SSDI because I paid a bunch of SS contributions; mandatory taxes. Although I'm pretty shit at completing my taxes on time, and I complain mightily about the process, I have no complaints about actually paying tax. In fact, I believe in societal taxation. The world is chaotic and sometimes terrible things happen, and civilized societies have systems in place to mitigate the chaos and help the people to whom bad things have happened.

Perhaps my perspective is very European or socialist or whatever, but it will be something like ten years before I take out of the SS Insurance program more than I put in to it. I didn't complain then, and I'm grateful now. This, not guns, agribusiness subsidies, or Congressional fact-finding in the Cayman Islands is what taxation is for. Social security should be the last thing on the chopping block, always. At the very least because bad things can happen to you, too.

On a day-to-day basis this means I get to concentrate on getting better, and have less angst, so we all win.

Putting a Demon Down

Since the medical exam I have been wrestling with demons. Or one demon in particular: what use am I? This is not a new conunndrum for me, but my Disability Insurannce application has thrown it into relief. I am asserting that I am not fit to work at all, and that I'm particularly unfit to do the work that I used to do. In the eyes of the Social Security Administration I coulld be faking it, but I am not; I wish I were, but part of what has been so depressing is the sense that I am totally useless for gainful work.

It would be easier, perhaps if I believed in a God, Gods, an afterlife, resurrection, or reincarnation, but I do not. Instead I believe that the universe is random, chaotic, entropic and wholly without magic. Which is not to say that life cannot be magical; it can, but mistaking our brains' inclination to perceive patterns for the existence of the patterns themselves is foolishness at best. I also appreciate greatly the many people who do believe and have prayed on my behalf. To ask your deity for intercession on behalf of an unbeliever like me is a great kindness. However, there is no comfort for me in faith: I have thought long and hard about it, and I do not believe.

Many people set aside this existential angst by living for their partners or their children. Even if I weren't single and childless, I would know that this merely avoids the problem for a while, it doesn't answer the fundamental question: what are we good for? Procreation has never been an adequate answer for me. If our lives are singular and finite, unremarked by any supernatural entity, and if we serve no purpose be living, why not indulge in the cessation and simply die? It would be a lot easier.

When I was considering this problem some years ago, I heard an invitation for the "This, I Believe" segment on NPR that challenged listeners to state their beliefs in a positive way: it wasn't enough to say "I don't believe in this or that," to record a segment one had to believe in something. I found the challenge worthy; it wasn't enough for me to not-believe in things. The thinking I did then has helped me now that it is harder and harder to be lost in books, for example, or otherwise distracted from the rather unpleasant reality of my current situation.

I believe that the universe doesn't care one whit about me, you or anybdy else. I believe that I was just as likely to have died on the spot or been left a drooling imbecile as to have survived with brain damage. I believe that there was no reason for my strokes just as there there is no magical plan that I am unwittingly serving. I believe that what differentiates us from non-sapients is the capacity for choice: I choose to agree that murder and theft are bad things, but that is my choice, and I have made it consciously.

Finally, I believe that we have no purpose in life except that we choose one. I choose to smile and laugh, to amuse and entertain as much as I am able. I choose these things in spite of an uncaring universe. That is enough.

A Not-Unpleasant Center with A Hard Coating of Horrible

I'm not sure why I expected to make sense of that experience, but it was largely baffling, and on balance pretty miserable. Hot chocolate is succoring me.

The office was not lovely, the receptionist was surly and the whole thing--down to the crappiness of the doors--was unfriendly to disabilities. The American's with Disabilities Act may be a step in the right direction, but unlike the UK, the country has yet to take the idea of accessibility seriously.

The first thing I had to do was write on a clipboard. There was no table. A clipboard is irritating but manageable if you're able-bodied. For me, it's hard to use, and when it's used to fill in information that they already have, it is infuriating. I was irked with having to fill out forms full of data that could be pre-filled and printed with gaps to make changes or corrections before I had a stroke. Now that the physical act of writing is hard, it is maddening.

After filling in the largely redundant forms, I exchanged them for an appointment slip and the unwelcome information that, having got Judd to painstakingly record my current array of medication, bringing the pills along was unnecessary. What joy. They're not heavy, it's just stupid and inconvenient to have to schlepp along the bottles as well as regurgitating a list they already have.

I took a moment to look at the appointment slip, and was baffled: rather than a neurological or visual exam, which were options, I was scheduled for a regular internal medicine exam. So, I asked the surly reception guy WTF? He checked, but that was all I was due for. I should call the Social Security specialist to find out more. Of course, there is no cellphone reception in their office. More joy.

Eventually I was called by the medical assistant to take basic stats. He didn't have any clue why I would be doing a regular old exam, rather than a neuro- or visual one either. He did, however tell me that I should put myself in God's hands. When I suggested that God didn't seem to be in a hurry to pay my rent, he assured me that He could. I now know where to refer my landlord in future.

Then more waiting somewhere else. Throughout the process, I had no idea what would happen next, except what I pieced together from overhearing the assistant talk slowly and loudly to people he thought were idiots. Over the last 18 months I've learned the hard way not to make that particular assumption about anyone. (I'm pretty sure the guy with a cane that had no ferrule was faking it, though.  Without that handy bit of rubber, the stick would be useless to me.)

Finally I was ushered into an exam room, instructed to strip down to my underwear and put on a gown. To give you an idea how much slower everything is, I hadn't finished putting the gown on before the actual doctor arrived. She was very pleasant, seemed surprised that I had had many strokes, not just one, and thorough. Talking to a professional who behaved professionally and treated me like a real person was the high point of the whole process.

That was it. Now I'm left wondering when the Social Security specialist will return my call (or answer the phone), when I find out if I get assistance, and whether I have to go for further exams. I can't help but think of all the things I didn't tell the doctor because they have become ordinary obstacles. But I'm a lot less anxious than I was, and I expect I'll sleep well.

Eighteen Months

It's odd that my SSDI assessment is today, exactly 18 months since I had a series of strokes. I often play down the difficulties I have - I don't want to be a whiner - and I'm trying to concentrate on the ability part of disability, inspired by this year's Paralympics amongst other things.

Today, though, I have to look medical orthodoxy in the eye and believe its depressing conclusions: I won't get any better from here. I think that's not true, but I am aiming to give orthodoxy the finger by continuing to improve, and in the meanwhile it's better not to be deluded (as they might think). So, reality check update.

Mental
As I will repeat to anyone that will listen, there is no sign of cognitive impairment. I think there is some damage, though, but I was smart enough before the damage that it's not measurable afterwards. It isn't major, but I am just not as sharp as I was. Maybe that's just because my brain is busy. Depression has been more significant since the stroke. It's hard to see a future being this crocked. It will be somewhat easier if the SSDI is approved because then I can make getting better a full-time occupation.

Facial
The palsy is slowly lifting, but the left corner of my mouth remains stubbornly inert, which means lopsided smiling and I have to be careful laughing and eating. I suspect some friends try to make me laugh when my mouth is full, but I'm OK with that. Bastards. I can just barely close my left eye, at night my eyes roll up a bit to get darkness.

Visual
This is the worst area, with least improvement. Specialists think there will be none. I believe my double vision is getting better, but it is glacially slow, and I still have double vision. I also have One and a Half Syndrome, and that may never go away, especially the nystagmus in the right eye. Harder to see from the outside, but pretty obvious to me is the oscillopsia, which is best illustrated in my post on how the world looks to me. It still looks like that.

Balance
I wobble and stagger, and occasionally fall down. I wrote about falling outside, which was the first time I went arse over tit outside in New York City, but a couple of weeks ago I fell in my own apartment, and every day I stop myself falling through conscious acts. I sway forwards and back without any apparent rhyme or reason when I don't have anything anchored (a hand or my ever-present stick). Honestly I can't tell if my fundamental ataxia has improved or as I suspect, my ability to handle it..

Tremor
The dysmetria continues in my right side. You should see me try to pick up dice. Or a pencil. It's pretty funny. Except that it isn't; I still can't carry fluids in my right hand without spilling them, eating is an adventure, cooking is a challenge, and folding clothes is a punishment worthy of the ancient Greeks.

Weakness
There's no doubt that I've got stronger. When I did the standard neurological test of squeezing pairs of my doctor's fingers, my grip is pretty strong. But the test is useless at determining how strong I was before, particularly relative to the left side. That's where much of my problem lies with strength, that, the tremor and the fact that stabilization muscles have got weaker.

So, that's the month's round-up of woes. It doesn't cover where I think I've improved, and nothing really explains how tiny the incremental improvements are. But I don't recommend having a stroke to find out. I'm about to set off for this assessment; I will probably be very early, but I'm still pretty bad at estimating travel times, so I hope the waiting room is nice.

Anxious waiting

Silence has reigned while I wait anxiously first for a date, now for the appointment itself for my disability insurance assessment. Again I'm faced with the spectre of everything I can't do, only this time I have to hope that the extent of the damage is clear.

It worries me that the system seems geared towards people who've lost limbs in a combine harvester, fingers in an industrial press, or some other gory spectacle. My own rather mundane brain damage, and ever-increasing appearance of being my old self belies the difficulties I still have.

I find myself wondering if I could be trying harder, or better to return to being productive. The truth is that I can't think of of any job I have done where I would be hired now, or even capable of the work I used to do. It's pretty crushing being so useless and even more so that I have to be demonstrably useless next Thursday, 18 months to the day since I had the stroke.

What Video Games Taught Me About Brains

I used to play World of Warcraft. It's a long story and all Justine Larbalestier's fault but by the end I was raiding seriously four times a week, and casually a couple of times, too. I quit when I'd got a world ranking in a fight, but was bored and offended by Blizzard's content in the Cataclysm expansion.

I killed this guy. A lot. Took his stuff, too.

For my current purposes it doesn't matter why I quit, only that I played the game seriously, and I was good at it. I used a mouse that had 8 or so buttons, and combined with Shift, Ctrl, and Alt keys could cast spells and run commands with a combination of my left hand on the keyboard and my right on the mouse.

Long before I quit, I was not thinking "I should cast this spell, so I should click that button with my right thumb while holding down Ctrl with my left pinky." Instead, I was just thinking "cast this spell," and the rest was taken care of by muscle memory.

The idea of muscle memory is familiar to most people: musicians drill scales, dancers learn sequences of moves, gymnasts learn floor routines, and video gamers learn to do what the game asks of them with their controllers. Whether it's casting spells or driving cars, at some point players go from thinking "press X" to thinking "accelerate" because muscle memory takes over.

Driving a car is a good example of this process, whether in the virtual or physical worlds. Drivers' responses become automatic, eventually. You notice this in new drivers when you stop crapping your pants every time they get behind the wheel.

Of course "muscle memory" is utter bollocks. Your muscles don't remember anything. That's not how they're put together, not how they work, and not what they do. It's not the nerves activating the muscles that remember, either. It's your brain that's doing the magic, and it's a bit more involved than just remembering how to do something.

It turns out that there are several layers of intention and execution between thought and act. At a high level, the mind is thinking "reach for that glass" and that impulse is translated into arm and hand movements, and thence into the appropriate muscle contractions. If reaching for glasses is something you do often enough, then the whole process gets optimized by the brain. You really notice this in driving when not only have you optimized the various actions of driving, but you have travelled the same route so often that the whole journey is an automatic sequence that you don't remember carrying out.

Who cares? I do. Because as well as remembering keyboard fingerings from my teenage years (I'm sure I could still dock in a Dodec at full speed), my brain learned how to be very good at WoW in my late 30s. In other words, far from the idea that our brains are done with developing in late adolescence, they still go on adapting and making physical changes to optimize our performance against the outside world far into adulthood. A leopard may not be able to change his spots, but a human can change his brain.

This matters to me because it means that recovery is not only possible, but inevitable given the right conditions. My job at the moment is finding those conditions and ruthlessly pursuing them. Games are part of the solution, too: they are a compelling medium in which the player frequently repeats physical action intently, has to get them right, and has to pay attention to the action and the result.

Sadly, this is where my frustration with the video game industry and the medical industry lie: for opposite sides of the same coin. Recovery games are shit as games. They're boring. Normal games miss the opportunity to make their players interact in ways that make them more physically active in good ways.

I'm still not going to touch WoW again with a 10' pole, though.

How the world looks to me.

Normal vision

Since pictures substitute for words in many cases, I thought I would try to illustrate how I'm seeing at the moment. I'll build up separate images with each effect of the brain damage, so you can get an idea of how things look to me. I'll stick to the images that my eyes are sending back to my brain, which perceives the world slightly better, but works poorly with text.

First, here's the image I'm going to work from. Bear in mind that most of you would see this in 3D, but I don't. It's the cabinet in my living room that's full of games and game books. Notice that it's not hard to read Hoity Toity or Goa, and many of you will recognise Settlers of Catan.

Myopic version

I have been myopic (short-sighted) for over 30 years, so without glasses, the view would be blurred. I am very myopic so things are very fuzzy. Not so bad that my glasses look like the bottoms of milk bottles, but headed in that direction, for sure.

Of course I wear glasses, and used to wear contact lenses, so the world is not so blurry until bedtime, but since the strokes, I have had double vision (diplopia) which confuses things. I have diagonal diplopia, which is oddly more confusing than just horizontal or vertical displacement. Because my diplopia is rooted in the coordination and function of my oculomotor muscles, the muscles that move my eyeball, rather than in the visual cortex, the displacement is not fixed, it swims around.

Diplopia version

I also have 1.5 syndrome, which for our purposes here means that the displacement differs depending on where an object is in my field of vision. The syndrome has affected my left laterus rectus primarily, but some of the other muscles too, so the doubled image is both translated diagonally, and slightly rotated. The image to the right is a reasonable approximation to what I would see wearing glasses, almost. Read on for more wrinkles! It's not quite accurate because my image manipulation skills are not mad enough to convey the contention of the two images. You can clearly see the Goa there, but the picture doesn't give a sense of the other Goa wanting to be read first and foremost.

To manage the diplopia by reducing my visual signal to a single useful image, I have an occluding filter on the left lens of my glasses. Or, in English, I have a disc of translucent plastic that sticks to the inside of my left lens and makes it all blurry. Peripherally, my left eye has the benefit of my glasses without the filter, which should be of some use looking down, but because of the 1.5 syndrome, is not much cop on the left side. Dashing as a patch might make me, keeping my left eye essentially uncovered like this keeps it moving in (broken) concert with my right eye, and can only help with recovery. The effect of the filter is that I see something like the image below.

Occluded version

The irony of making one side of my vision so useless that my brain ignores its input is not lost on me. It's not always effective, either; sometimes, especially when I am tired, my brain seems more interested in the garbage coming from my left eye than the more useful stuff from my right.

The final, and frankly most debilitating visual deficit I have is oscillopsia; my right eyeball moves up and down a little, rapidly and regularly. As the size of the movement is usually at least a line of regular text at my comfortable reading distance, this makes reading difficult. It's also better or worse variably, but it's never better than below in terms of distance moved. The jitter is also quite a bit faster in my eye than in the animation.

Of course, it's not the eyes that do the seeing, it's the brain. What I've tried to illustrate is what  my eyes are sending on to the brain. What I actually perceive has changed over the last seventeen months, so I'm better at seeing a steady field of view, especially for rooms that are familiar. It's worth noting that I'm discarding the information from one eye completely, so I don't have binocular vision. I can't tell how far away things are, how fast they are moving, or how flat they are. Sidewalks are exciting! One of the notable effects is that the brain evidently retains a working model of the world, and uses that when there's no depth or distance information available: I can reach for a glass that I put down recently, but if you move it, I will miss.

Oscillopsia version

I seem to have learnt that the world is not constantly shaking, so the oscillopsia is usually (but not always) ignored in familiar spaces, but it is in full effect when I try to read. One trick I have used to read signage or subway advertising and the like is not to try to read a line of text from, say, a poster, but to allow the image of the text to be assembled coherently in my brain, and to read it from there. This trick is fiddly to execute!

One other thing I have learned from my ocular odyssey is that I infer a lot of the actual text in many novels; the word choices are so often obvious that I don't actually read them, but assume the word given the context. This is less easy with non-fiction, and I find any reading tiring regardless.

EDIT: Over on Google+ a friend was asking how I could even prepare these images given the way my eyesight is at the moment. I've had longer for my brain to get used to the way my eyes behave, I know what my eyes do, and I'm pretty familiar with my computer. The image manipulation is fairly simple. It still took more than a day, mostly because I was tired. Looking at unfamiliar things is most like the last image. 

Later, I likened it to looking at things from a very rattly moving vehicle. Distance stuff is easier and more solid, because the brain is used to the eye moving rapidly over near things and assembling a distant image. That image is not always correct, because the brain interpolates things (one of the reasons that a lot of eye-witness testimony is bollocks), and sometimes it fills in the gaps with things that should or might be there, but aren't.

Nearer stuff is impossible to perceive at a glance because I am having to do pretty much the same thing for near vision as the brain does for distance perception, and that's not instantaneous. It takes me enough time to check cross streets for oncoming traffic that I might as well just wait for the lights. I almost never jaywalk alone. Similarly, as I'm typing, I know what words should appear, and in what font, so my brain has an easier time of adding new words to a page of typing. Reading a previous paragraph, though, sets me back again. END OF EDIT

As usual, questions are welcome!

Spring 2013 Monthly Update

It's time for another monthly update, and I looked back at my first March update for an idea of how I've progressed. In one thing, my weight, I've taken a step backwards, since I'm heavier now than I was then, but my pants (trousers) still fit, and I'm pretty sure some of that weight is muscle mass, since I am stronger now than I was then: I have the record from the last ASPIRE session, and where I was doing a lat pulldown of about 35lb (it was all in kg), now I do them at 140lb. Also, I'm pretty sure I couldn't do two sets of eight pull-ups then, so by that simple measure things have improved.

A friend pointed out at a birthday party on Saturday that I seem to do much better on pull exercises than on push ones. Apart from the fact that we were talking about fitness at a pancake party, this makes a lot of sense: the push exercises I do are almost all dumbbell exercises that take more stabilization than the pull exercises which tend towards raw strength. If I can strengthen the stabilizing muscles with pull exercise, then I might be able to accelerate recovery of the pushing motions. The push is already improving though; a 20lb dumbbell bench press is now as stable as a 10lb once was, and a 30lb dumbbell press as stable as a 20 used to be (not very).

I used to be able to bench over 200lb, but barbell exercises tend to use more weight, anyway, and I went and had a bunch of strokes, so it's no great surprise that I'm just managing 30% of that weight with dumbbells. Another reminder that comparing my performance to that of 20 years ago is stupid, futile, and a sure way to be disheartened. Now, I just make sure I'm improving week on week.

When I wrote an update a year ago, it was before the neuro-ophthalmologist said my eyesight and balance wouldn't improve and I said that:

My guess is that the maculae will get lined up first, so I have binocular vision at the focal point, and then the eyes will work on twisting so they have the same horizon, and my hope is that somewhere in there, the oscillopsia will go away. Hope springs eternal.

I still think I am right and the neurologist wrong, because my balance has improved, and my diplopia is gradually improving, contradicting him. The diplopia is muscular, so I still see no reason why it shouldn't continue to get better. Unfortunately it's pretty binary, like the tremor: it can improve lots, but until it's gone, it's as wretched as ever. I'm going to try to post soon about how I see the world at the moment, which might explain why, although these posts seem cogent enough (I hope!), working is extremely hard. I wouldn't hire me!

The irritation with nomenclature must be seasonal, because it bugged me a year ago, too. I still think it matters, though: once you've established the cause of a stroke, and are treating it, the person concerned is left dealing with the brain damage, and that's the more significant long-term thing. It also means that we can recover. As I've said before, if I'm outpacing a baby born when I had the stroke, I'm happy.

I'm doing less physically than I was a year ago, on paper, but at the same time I'm trying to lead a regular New York City life. It turns out that my life back in Dorset relied very heavily on other people doing things for me, and a lot of sitting down recuperating. Here in NYC, I've found that I don't yet have the endurance to lead a full, busy existence, so I'm getting used to leaving early, caffeinating with care and exercising a bit less, while working a bit harder generally.

On the material plane, things are rough. I just heard it's going to be at least a month before I get any Disability Insurance loot, and even then it's not certain. That means its normal for the process to last nearly a year after an event. (Six months before you can apply, then four months processing, then at least a month handling, plus go-see-our-doctor trips.) This is insurance for people who can't work; I have no idea how anyone is expected to go a year without income. I've survived through the generosity and kindness of family and friends, I don't know how else one does it.

The wait puts me in a strange sort of Schrödinger's Cat state of being broke now, but potentially fine in a month or so, which is weird and uncomfortable. I hate not being able to get my metaphorical round in, but I have to accept my reality at the moment, just as I accept that I can't go out without a stick, my fight hand sends coffee flying, and my eyes are weird. For now!

Stroke Survivor? Victim? Sufferer? None of the above.

Within a week of having the first stroke, the nomenclature around it vexed me. "Stroke patient" worked while I was in hospital, but that was it, and the terms that replace it are rubbish.

I can't abide "stroke victim." The brain event I had didn't select me for victimisation, and I'm not now, nor have I ever been, a victim of any singularly malign force. I had the stroke because I was fat, lazy and have a genetic predisposition to high blood pressure that, coupled with my obesity and sedentary indolence made my head explode. No victimisation there.

Whenever I hear "stroke victim" I am reminded of a scene in the movie Addams Family Values, where Wednesday is trapped at summer camp and is enduring a swimming rescue lesson. She's shown on the end of a pier in a black Victorian bathing costume, next to her tween nemesis, the preppy, peppy, pretty bland and blond girl. The instructor asks for a volunteer to be the victim. The blond girl's hand shoots up and she squeals "me, me, me." The camera cuts to a close-up of Christina Ricci deadpanning "all your life."

The popular alternative is "stroke survivor." I reject this because it's tautological. I'm either a stroke survivor, or I'm dead, and if I were a corpse, you wouldn't be reading my writing. "Survivor" is way better than "victim" but it's  still rubbish, because it adds nothing to the conversation.

Until recently, I had settled on "stroke sufferer." There's certainly been some suffering involved; recovery isn't really that fun. The term is at least accurate, but a problem still obtains: the word "stroke." Having a stroke is significant, and it matters a lot when the underlying cause is strange and unusual. But seventeen months later, I find 'stroke' as a magic word troublesome. Sure, I will use it to my advantage whenever I can, because frankly, I need the help and consideration, but it implies that there is something particular and unusual about my condition, and I see that as more of a problem than a perquisite.

I'm not recovering from strokes, you see. They were what caused it, but what vexes me now is simply brain damage. Differentiating stroke from being shot in the head or getting your brain damage some other way serves only to make excuses for not recovering, and sod that.

So, I'm left without a snappy term, and default to "stroke sufferer" for the time being, until I  can think of a good way to encapsulate "ordinary guy recovering from brain damage."

Acupuncture and Stroke

Why I Pay To Have Over 50 Needles Shoved in Me Every Week

It works.

I go to the gym, go to the pool, and go to acupuncture, all things I have to pay for, and all things that involve varying degrees of discomfort, because they are all working, demonstrably, to hasten my recovery from brain damage.

To get why they are having a positive effect, I think it helps to understand what's going on with me. When I had the strokes, bits of my brain died. The bits that died mostly controlled motor function: the movement of muscles. In some cases, like the left side of  my face, although sensation remained, I lost all the brain matter that was sent signals to move the muscles. In other cases I lost sensation and control, like in part of my right butt; it felt like I was sitting on something in my back pocket, but in fact I was just sitting on my ass, and couldn't feel it (I can now, no need to kick me). In most cases, I lost some of the brain matter controlling some of the muscle, with the result of making almost every part of my right side below the neck weaker and less coordinated. The secondary problem, in some cases, is that of atrophy: it's been a long time since some muscles saw use. My right hand is visibly thinner than my left, and there are muscles in my face that can only be felt on the right side.

At this point, some seventeen months after the strokes, to recover, I have to get other parts of my brain to do the jobs that the dead bits used to do. This is a process that is similar to a baby learning to use its body, a process that takes many years, and is eventually optimized in adolescence, which is why teenagers can be great klutzes, but suddenly graceful by their late teens. I'm hoping it doesn't take me as long as a decade, but it might.

Using the brain's plasticity to get live bits to do the work of dead can only happen when there is stimulus in the brain in the live bits. That's why function now improves slowly, and improvement only happens in muscles whose controlling brain parts were adjacent to living brain tissue. Their signals were reaching still-living brain matter, but it has to learn not to ignore the signals as irrelevant, and take responsibility for new muscle.

Gym work both requires muscles to work, and the brain to control them, more often than not in the stabilisation; that's why I do mostly dumbbell work. In the pool, I'm requiring muscular control and coordination, and also parenthetically working on my endurance which is pretty low. The benefits are clearly noticeable: despite being tired after swimming, I walk better. So, what does acupuncture do?

Here's what an acupuncture session is like, if you've never had one. You take off varying amounts of clothing, sometimes  lie face up, sometimes face down, and the acupuncturist puts a bunch of needles in you. Then you rest for a while, often falling asleep. Finally the acupuncturist removes all the needles and you're done. Yes, some of the needles hurt some of the time, but usually for no more than a second or two. Also, I've had a lumbar puncture (a.k.a. spinal tap), and these are nothing in comparison.

Often, you're booked in for an hour's session, and the acupuncturist will come and wake you up so they can get the needles out and get you dressed before their next client. I've been going to a great place called Olo Acupuncture in New York, that practices community acupuncture: the treatment happens in a communal space with a bunch of table and chairs to lie in. Apart from the price, the best thing for me is that they let you rest (or snooze) for as long as the treatment takes. On a recent trip, when one of the needles was damn sore, I slept for over two hours, and it's not like I'm running a sleep deficit.

There's a lot about traditional Chinese medicine that is alien to my skeptical self, and as a result I find it useful to think of much of the approach as having a very good, but rather peculiar, working metaphor. Frankly, I don't care if a practitioner is balancing my chi, clearing wind from my trembling limb, or just poking me with needles: it works. I feel better afterwards, more even, more symmetrical.

What about the placebo effect? Perhaps it's just me thinking that acupuncture is going to work, and so it does. For many of the benefits I perceive that could be the case, and the mind is certainly significant in changing the brain, but not all. The left side of my face has gradually been moving thanks to acupuncture. I have no doubt about it. Before I had needles in my face and left orbit, my left side did not visibly move. It does now.

What I think is going on is that the needles are stimulating the atrophied muscles, or nerves into those muscles, and my brain is recognising that stimulation as requiring response. Perhaps it's as simple as the needle being fine enough to be an irritant without causing damage. Perhaps it's something else: acupuncture anesthesia seems to work on a different principle. No matter, I can't stimulate those muscles any other way; believe me, I've tried.

In the end, what matters to me, is that acupuncture is helping me to recover, and to recover faster from the brain damage caused by stroke. It works.

Sucky Progress Report

Several weeks of progress report obviously went missing largely because they sucked. I've gained a bit of weight (which I don't care about that much), and just not been to the gym or swam enough, let alone written enough, and so on.

Part of the problem was undoubtedly that I was off my depression meds for about two weeks, which was plenty long enough to start feeling the effects. It was all due to a preposterous series of cocks-up between my nearest pharmacy (the slowest Rite Aid in the world) and my doctor, and is at last sorted out. In the meantime I discovered that, even knowing that short-term discomfort or not-fun was better for me long-term than short-term pleasure intellectually, without the anti-depressants I made the wrong choice every time. With them, I make better choices.

On the other hand, I've noticed several small improvements that tell me that, slowly but surely, I am recovering. They are all attributable to some activity on my part, about which more anon, but they are still happening.

Valentine Update

I'm combining this month's update with last week's goal report, both of which are late. Saturday and Sunday the snow kept me housebound: there was a lot of it, and it wasn't cleared enough for me to walk on without too great a risk to limbs, ass, and dignity. Not that I give much of a damn about my dignity any more. 

Monday, I thought it would be clear enough to go all of two blocks to pick up yet more drugs from Rite Aid. This thought was a mistaken one. The two blocks there and back were so wretched in the rain with uncleared sidewalks, half-block detours, near calamity and general precipitation induced misery that I gave up on the whole day and wrote it off. So three days of playing XCOM ensued. Not a complete loss, though, because I have discovered that console games improve my right hand's dexterity and sensitivity. Good thing, too, since XCOM is so damned good. 

Today, Tuesday, I was back at the gym, and stronger, if unsteadier. Before I went, I could hear the start of that siren call to indolence, but quashed it easily. I did wonder if that was how the depressive slump could start though: obsessive interest in something distracting, initially with a good reason, but soon disregarding the flimsy pretext for being sedentary. 

To the update:

Vision hasn't changed noticeably, but my left eye is coming closer to closing. There are signs of life in the lower lid, which seems to be closing at night. It doesn't blink so well, and it's a son of a bitch to get moving, but I'm certain it's attributable to acupuncture. No change in the oscillopsia yet, nor obvious change in the diplopia, but I'm seeing an ophthalmologist soon, so who knows what that may bring. It turns out the video of my one-and-a-half syndrome is still on tape on the neuro-ophthalmologist's desk, but when it's digitized, expect a link!

My left facial palsy is gradually lifting, again thanks to acupuncture. It's a bit weird having all those needles shoved in my face, but it's working. I still only smile with the right side of my mouth, but I'm confident that the left will join in soon.

Toiling away in the gym and pool has been improving my strength and endurance, but the right side weakness still exists. It's really noticeable doing something like a dumbbell chest press, where my left hand lifts the weight smoothly and cleanly, but the right hand wobbles and the arm begins to struggle sooner.

Balance has definitely improved, most clearly visibly at the gym, again, where I can now actually do standing dumbbell calf raises without falling over (mostly). I seem to be swaying backwards and forwards, though, even when I have a steadying point under my hand. This swaying explains a lot of the apparently random pitching forward and stepping back that I've been doing, but I'm currently at a loss to correct it. 

The period of the sway does not match the period of the tremor, which I think is improving, again thanks to acupuncture. One of the needles in particular hurt like hell in time with the impulse to twitch, so maybe the needles are reconditioning my arm not to move in a bad way. Who knows? I still slept for two hours solidly, pain or no pain, so the needles were doing something!

The exciting new discovery is that I'm slightly deaf in my left ear. Not enough for me to have noticed before now, but my snoozing alarm increases in volume, and I realized that I could hear it first through my right ear, even when it was closer to my left. It's not a huge deal, so I'm not worried about it, but it is consistent with the theory that I have some left side vestibular damage.

All in all, not too bad, considering that a year ago I was just starting to add some weight machines into my gym routine, and leaving my stick behind in the gym was pretty scary.

I should thank the anonymous benefactors who got me hand grip strengtheners and a pull-up bar from my Amazon wish list; I have used both and they are doing me good! I haven't figured out how to find out who was that kind from the interface, so they are anonymous pro tem.. 

Finally, here's the week's progress report. Three days off mean a big fail on most of the goals, but snowpocalypse and I saved humanity from an alien invasion, so I think I'm allowed.

Weight Goal: 170lb. Last week: 198lb, this week: 197lb.

Exercise Goal: gym 3-4x, swim 2-3x - This week: M:swim, T: day off!, W: Swim, Th: Upper, F: Swim, Sat/Sun: snow

Meditation: M, T, W, Th, F

Tai Chi: M, T, W, Th, F

Stretching Goal: after every gym - Th,

Writing Goal: write at least one word a day on Project #1: M: 42, T: 0, W: 68, Th: 46, F: 117