Remembrance

After I had my strokes, I saw one of Louis Theroux' documentaries about how strokes and other traumatic brain injuries can cause dramatic changes in personality, but that the person with the injury is not aware of the change: they think they're just the same. It was moving, interesting and disconcerting: that could be me.

Troubled, I checked with someone who knew me before and after the strokes and asked whether they thought I was different. They said that I was essentially the same, but got angry much faster, something I consider bad, given that I can easily come across as irate when I think I'm just excited.

I've considered it a lot, and I think something different is going on. I'm as angry as I ever was, but as we grow from childhood through angry teen years to adulthood we recognise the physical changes in our body that show we're getting cross, and are able to insert our reason to moderate or mitigate that. We learn when it is appropriate to express our anger in public and when it isn't. Stubbing a toe, for example, makes us angry, but we learn not to scream, shout or punch the cat. I still hate cyclists and get lane rage in the pool, though.

If, when the brain is damaged, our brains no longer recognise the "getting" physical signs but a different (still living) part of the brain recognises the "got there" sensations, then we can go from 0-60 in no time flat. We don't get the opportunity to insert our reason into our emotional responses. We essentially act like small children, but as adults we just appear easily irascible or suddenly emotional.

I think this is what I experience and there's good evidence, particularly today on Remembrance Sunday, that that is the case. I laugh more readily and quickly and sometimes at things that are childish: I haven't lost my complex adult humour, but I also laugh at farts, and can't help doing so.

Today, I sob and cry easily and loudly. Whether I'm conditioned to respond in a certain way or deeply feel the wasteful loss of war is irrelevant: I'm loudly sobbing at poems on the radio.

The most easily recognised effect on me is that I am quick to anger,  but many other emotions have been affected as well, and they're far better to suffer. As a result, I try to avoid things that will make me respond inappropriately in public, or at least do so in the dark: I often respond wildly in the cinema, but nobody can see. It's also a relief that my momentary irritation expressed as angry passes quickly.

My sorrow today lasts longer.

Bloody Resolutions

For the first time, I've maintained a New Year's resolution for the whole year. I don't recall ever doing that before, certainly not for a resolution that was specific, rather than the "I will be a kinder person this year" type of vague promise that any lawyer could drive a truck through. No, for 2017 I resolved not to fall over, and I did it.

I've sat down quite heavily, but always on a chair and one I intended to occupy, if not so precipitously. My arm flies out often to help me keep my balance and I'm no stranger to the windmill flail of a gymnast trying to stick a landing, just with much less grace. Turning has meant some fancy footwork (from my left) when my right foot has decided to land in a very unhelpful spot, but for a whole year (and since then) I have not fallen.

This may not seem like a big deal, and for most, it isn't. Not falling is like breathing: something that we shouldn't have to think about in most circumstances; it's automatic. Over the last few years, however, gravity has taught me that I do need to concentrate, and for me, not falling will never again be automatic. Instead, the preparation and calculation when I stand up, turn or just walk must always happen, and that is on it's way to becoming automatic. It's faster now, but there will always be a delay when I get moving; I always have to think about it consciously.

"I am in blood stepped in so far that, should I wade no more, returning were as tedious as go oe'r." (Macbeth)

Making that mental preparation, rather than assuming that I can turn around without ending up on the ground, is boring. If moving can't be automatic again then the siren call of the sedentary response is even more alluring: if moving is a hassle, don't move. This has it's consequences, though. Brains develop by having to work, even with physical things (we just, mostly, get the boring repetitive stuff out of the way when we're little kids), so choosing not to move inherently limits healing. Also, doing nothing makes me fat and unhealthy. The very condition caused by having a stroke makes behaviours tempting that in turn increase the likelihood I'll have another. It's a trap!

A year ago, I had no expectation that I'd make it the whole year, just intentions. At some point, I'd gone so long without falling that merely having to start again would have been painful, as well as the physical discomfort of having fallen. By the last few days of the year, I was determined not to waste my efforts, although such 'waste' makes no objective sense. Now, a new year has begun, and I'm just as determined to maintain my resolve and not fall.

However, I've already made it a year, demonstrating to myself both that I am able to not fall for a whole year, and that I have the stubbornness to sustain a resolution. It would be foolish not to use the latter for further gain, especially to counteract pitfalls; resolving to eat a packet of biscuits (cookies) every week would easy, bad and delicious.

Last year was tough for me; I was depressed and news (local and international) has been appalling. I've found it hard to see anything ahead but doom and consequently had little motivation beyond the hedonistic. As a result, I find myself at the start of 2018 fat and unfit which is a downwards spiral, since exercise increases serotonin levels and makes one happier, as well as fitter and less likely to die.

So, for 2018, I've added to my resolution. I'm still adamant that I won't fall over, but in addition I've resolved to go to the gym at least three times a week and do some exercise. If I don't go three times and could have then my falling resolution is failed: I'm leveraging the tedium already spent to require further tedium. I am in blood so far stepped in... It helps to know that in a few months, going to the gym won't be a chore any more, but one of the ways I've failed before is when my routine has been disrupted; it's been trivial to routinely not go to the gym after a valid event to prevent me going. The resolution addendum, therefore, is not absolute: I know, for example, that I won't be able to go to the gym at the end of February because I'll be on a boat in Norway, but the addendum will require me to go back to the gym when I return.

This time next year we'll find out if my resolve is stronger than my indolence.

Back to NYC

Tomorrow, I'm flying to New York for a couple of weeks, with a long weekend in Chicago. My agenda is to see people (and eat a real bagel, have real pizza and a burrito), and I'm having to balance jamming in face time with the knowledge that if I overdo it, I'll pay for it, usually the next day.

As well as being unable to see all the people I would want to, it is a bittersweet visit. My first return to the city now that I no longer live there. I have so many memories of the place; I've had the best of times and the worst. I was there on 9/11, working on Wall St. There, my first tech talk at Google was when the International Space Station called. ("Where are you?" "Let me look out of the window... over Europe.") That's where I had my strokes. That's the city I went back to, and tried hard to live again.

It's a city I love, and I can't live there any more.

Normally, I don't regret that my life has changed. It's not like I can change it back, and change is part of life. I wasn't expecting such a big alteration, but, again, life is change. However, returning to NYC fills me with disquiet, I've realised. I'm reluctant to go, which is weird and a bit horrible. Even before I lived there, I enjoyed the prospect of traveling there.

It helps that I'm staying with wonderful friends and will have no trouble watching The Last Leg live from Rio while I'm visiting. If you haven't seen it, find it online at the Channel 4 website, it's great.

Anyway, I'm trying to get sorted for traveling tomorrow without thinking about the reality of it, because it hurts.

Vote, and vote for Hillary.

TL;DR: if you care about anyone disabled, then vote, and vote for Hillary.

I'm privileged that for 40 years I was able. Walking wasn't hard, conscious work, reading wasn't a difficult chore and balance was not a foreign concept to my body. I like to hope that I was a decent compassionate person and treated disabled people as full human beings with dignity and respect, but I can't be certain that - in my ignorance - I didn't slip up. I see unheeded mistakes and forgive them silently often enough.

Now, I'm doubly privileged to live with disabilities. Sure, they're a wretched pain in the neck, and nearly five years after my strokes I no longer remember what it was like not to struggle with simple things. Intellectually I know that I ran and jumped, read voraciously and could easily stand on one leg, but I can't imagine how. I say that I'm privileged to be disabled, because it's not that bad for me. It's terrible, but I've met people who have it worse, and now I know how lucky I was, without even realising.

It has made me pay more attention to how disabilities are portrayed and represented, and conscious of things that never registered before, and I'm glad because how we, as a society, show and interact with any minority speaks about what kind of society we live in. As with society as a whole, how individuals behave matters, especially when they are nominated for the US presidency.

This is how Donald J Trump publicly, openly mocked someone with disabilities.

Alone, I would consider that unacceptable. Even as a joke it's not OK, and there is no evidence that Trump was joking, nor that he can joke. He says what he means and he means what he says.

It's worse though because it reveals a horrible facet of Trump: he mocks because he thinks less of the other person, not for his ideas but simply because the reporter is disabled. He thinks that it is the norm to discount someone because they're disabled and is comfortable doing so.

Just to be clear: Donald J Trump thinks less of a disabled person because they are disabled.

If it was just disability, I would not be as ardent an advocate for ensuring he never gains the Presidency, but it's not, and he has shown that:

Trump thinks less of women.
Trump thinks less of people of colour.
Trump thinks less of LGBTQ+ people.
Trump thinks less of Muslims.
Trump thinks less of refugees.
Trump thinks less of immigrants.
Trump thinks less of PoWs.

All of those things disqualify him, and in sum, make him the antithesis of an American President. The President both represents and defines American society. In allowing Trump to become President, you would be acceding to his view of humanity and shaping US society; you are saying that you are OK with a worldview that sees the able as inherently superior to the disabled, men superior to women, whites superior to others, straight inherently superior to gay, and so on.

I think that is worth voting against. I'm sad that the US presidential race is still binary, but realistically, the only way to vote on November 8th is for Hillary Clinton, and you must vote.

Writing Myself Into A Corner

I'm right-side dominant and one of the strokes I had has affected my right side. For tedious reasons it is now too difficult for me to write and that makes life surprisingly challenging. That inability brings adult illiteracy into sharp relief as a terrible thing, but not my immediate problem.

A while ago, while watching the Antiques Roadshow, one of the punters brought a letter from Admiral Lord Nelson. The expert identified it immediately as one of his left-handed letters, since Nelson famously lost his right arm. I was stunned. Logic had failed me. It had taken four years and Sunday TV to realise that if one of my childhood heroes could learn to write with his off hand, so could I.

Thanks to a dear friend in America, I now have a copy of "Handwriting for Heroes" which aims to teach one to write cursive with the non-dominant hand after six weeks of daily exercises. The book is intended for military amputees and clearly has a soldierly bent, but I don't care: the fact that I haven't lost my right hand, let alone had it blown off is irrelevant; I still can't use it to write, and the book is written for adults. The latter is a great advantage: I fear little attention is paid to how wretchedly boring some therapies can be.

However, the book has been sitting in plain sight, with everything ready for me to use it, gathering dust for months. Why? I think I haven't used it for two main reasons: identity and defeat.

First, I am surprised at how integral my handedness is to my sense of self. I'm right-handed. That's part of who I am, like being 5'8" or a guy or my age. Unlike some of the things that can be altered or cheated on stage or screen, learning to write with my left hand seems like a fundamental change to me. I'd be different, somehow.

The second reason is worse: it feels like accepting defeat. By learning to write again with my left hand, which involves improving and developing its fine motor control, I am acknowledging that either the tremor in my right that is part of why writing is so hard will never get better, or that it will take so long to improve that I shouldn't hold my breath. In a way, it's worse that the book works on fine motor function, because that, if anything, would help my right hand.

Having figured out (probably) why I haven't yet started "Handwriting for Heroes" and come to the conclusion that my reasons are insufficient to actually stop me, and they're essentially bollocks, I need to have the intestinal fortitude to knuckle down and start using the bloody book. Continuing to dither and delay merely lends credence to the inadequate excuses I've been giving myself, and is no longer tenable, once I've done the figuring out part.

The reality is that I may never recover sufficient fine motor control of my right side to be able to write with it, but at this stage, four and a half years after I had the strokes, I'm certainly not going to recover it in the next six weeks, even if I do eventually can write, I'll be able to write with either hand (which is weird and cool), and the cost of not being able to write is too high.

In an odd way, it feels as though it would be easier to have lost the hand altogether. Then, I would have no alternative, real or imaginary, to fully using my left. As it is, though, I have the hope and hence the expectation, that my right hand will improve. Hope is not always as helpful as reality, and hope can be blinding.

Maybe That Got Better?

Sometimes, my leg gives way. I don't mean those times when my leg is a bit tired from too much exercise; that is expected, and quite easy to deal with (just don't think it will hold when it won't). I mean that every now and then, my right leg simply does not respond.

Time was when that would mean that I would promptly fall over, but that is now an exceptionally rare event, fortunately. Nowadays, I'm much more likely to be able to catch myself or to be positioned near something that can take my weight. It is still a rather negative event, and one that I would like to avoid, if possible, and understand. Naturally, I think I have an idea what is going on.

Periodically, I think my brain tries to route the command to my quadricep the way it did for 40 years. That chunk of brain is long since dead, of course, so the instruction fails and my leg buckles. This would seem like a pretty daft thing to do, but I don't think it is. One of the scenarios that causes things to fail in the brain is swelling. (I'm sure there are lots of others, too.) If all goes well, swelling goes down, and normal function can resume, as soon as the brain figures out that it can use the hitherto blocked pathway again. If it doesn't go well, you die.

So an algorithm that periodically checks an old, non-working pathway makes sense, because there may be no other way for the brain to establish that a path is working again. This would be much more useful to me if I didn't periodically buckle, but such is life!

Do No Harm

I just finished reading "Do No Harm,  Stories of Life, Death and Neurosurgery " by Henry Marsh. Autobiographical and enthralling. I read it in 2 days which used to be trivial but if you know me now, that's a testament to how good the book is.

As well as having very interesting subject matter, being candid, crotchety and compassionate in equal measure, it's well written, to add to the book's appeal.

If you're at all interested in the brain, neurosurgery or death, I don't think I can recommend this enough. Happily, I got this from my local library, and I expect you can too.

Several times he talks about "catastrophic strokes" and "wrecking" people in surgery, and I couldn't help but face the reality that I am profoundly disabled now, and quite likely to stay that way. It doesn't change my perspective, but it is quite stark.

Four Years On

Four years ago, exactly, I had a bunch of strokes, and I have been recovering ever since. I'm still at it, partly because it takes so damn long to recover, but mostly because I have nothing better to do. So, it's time for a status report, both physical and mental, and some cogitations.

Walking is still a challenge for me; I use a walking stick (cane), and can't walk very far. That's mostly because my balance is compromised, but my right side is still weaker, which is disappointing. My balance has certainly improved over the four years, I can turn corners a lot more easily than before, but my equilibrium is still very shaky. Swaying is my default, now. I still look drunk, but I care even less.

On my right side, as I mentioned, I'm still weaker by a long shot, and I have an intention tremor. This means that, when I intend to do something with it, my hand shakes. That makes writing with my right hand a challenge in particular (see below), puts typing back to hunt and peck (but see below), and means that moving any kind of fluid with that hand involved is a risky proposition: I prefer not to spill my beer. As well as the tremor, my arm and leg sometimes jerk at random and are more sensitive. The combination is spectacular.

Visually, there has been little change since this post, although my left eye (the most affected one) now moves a hair past the midline, which is progress. It's hard to see any movement on that front, because the changes are so small, but the difference in four years is undeniable. I still have diagonal double vision, which vies for most irksome visual defect with the oscillopsia, but have an exciting and dashing new strategy for my eyes. Until recently, I've been wearing a prism that corrected the vertical component of my diplopia. Now, however, I'm patching one eye. This new piratical approach deserves its own post, but I'll say this: the patch changes side.

When I first had strokes, my face was paralysed completely from the middle. It was like having a free botox treatment, but only on one side. Since then, a lot of motion has returned: I can smile with both sides of my mouth, but my face is very lopsided. My left eyelids don't close yet. In general, it seems as though activity returns from the middle, from my nose to my ear. I'm a bit concerned that my lips and mouth have not apparently changed, and I think that may be my fault: I haven't exercised them enough. So it goes.

The biggest change for me has undoubtably been moving back to the UK. There is so much I could say about moving back here from New York, but I'll just say that my life is physically better here, and leave it there for now.

Earlier, I mentioned that typing is hard: it is, with a regular keyboard. My typing speed is greatly reduced on a QWERTY keyboard, mostly because I can't tell which key my right hand is on, and it hits a random key often enough that I find the whole exercise deeply frustrating. Since it has been four years without perceptible change, I've switched to a one-handed chording keyboard, called the Twiddler. The whole of this post, including punctuation, was typed with only my left hand. Learning has been awkward, but it's more the slowness of learning to touch-type from scratch, and that is much easier to deal with. It's early days yet, but I like the device so far.

The other casualty of the tremor has been my ability to write with my dominant right hand. I'm luckier than some, I still know how to form letters, but my writing is horrible: inconsistent, jerky and slow. Recently I was reminded that Admiral Lord Nelson learned to write with his left hand after losing his right arm. Notwithstanding his brilliance, if he could learn how to do it, so can I.

So there you have it: in some ways nothing has changed in four years, but of course, a huge amount has improved, and life is really not bad at all.

Fifteen Years

It has been fifteen years to the day since I moved to New York. In 56 days I'm going back to England for good.

I thought I would be moving here forever. New York has been my home for a decade and a half: I was a few blocks away from the WTC  on 9/11, I missed the great blackout by accident, I was here for Sandy. Many of my good friends live here. I have lived, lived and lost in this great city.

Then I had some strokes here. I was hospitalized here, and managed not to die here.

Now, I can't afford to live here any more. Every visit to every doctor is another unexpected bill and this is an expensive city.

I could survive here, and I have, but the city is packed with all the things I can no longer do, or can't do without inevitably comparing the many joys I had of this place with the degraded experience I have now. Increasingly, I'm relying on my memories of the city, not on new ones.

This country is bonkers and gets increasingly insane with every day. It is so easy to ignore just how dangerous the prevailing mindsets are when you are affluent, white, male, able, and living in a big city, but not so easy when you can't work and are no longer comfortable.

I have no regrets that I lived here, but I have no tolerable future in this city. Such is life. One great decade and a few years that weren't so great are not too bad at all, by my reckoning.

I Have No Idea Who You Are

My eyesight has not improved perceptibly; the current strategy of bringing both fields of view into closer vertical alignment is better than nothing, but not as good as obscuring one eye, and a lot bigger pain in the neck. I'm going to change, but not until I'm back in the UK for good… I have too much to do before then.

One of the ways in which my vision sucks is the effective lag I have in forming a picture and passing it on for recognition. My eyeballs are fine. The muscles controlling my eyeballs are not. So the visual data I send to my brain is in constant motion. It's a lot like having a shaky cam on each eye and trying to make sense out of the picture when they're combined with built-in displacement and shaking inconsistently.

I can do it; I form an image. It's slow though: it takes me seconds, not milliseconds. In practice, that means I have no idea who I'm passing on the street until they are past me, unless there is some other input. To give you an idea how bad it can be, I didn't recognize my own father on the street until he spoke.

It's easier when people speak: there's nothing wrong with my hearing, nor with the recognition itself, just the basis for recognition. Context can make it easier, too: if I'm expecting to see a certain person in a given place, then I can more quickly fill in the visual gaps to confirm that I'm actually seeing that person not someone roughly similar.

Happily for everyone else, there is no need to cross the street to avoid me: I won't recognize you. Sadly, the pleasure of running into someone and chatting is lost to me: I can't see who you are, let alone pick up the subtle cues that tell me if you want to chat.

On balance, I think this has made me more gregarious. I'll talk to pretty much anyone, but it's probably because I have no idea who they are.

Don't Kid Yourself, Push Yourself

I just got back from the pool again, but instead of swimming for two hours, I only swam one. 2,100m in an hour, breast stroke, isn't too shabby for a brain damaged old fart like me, but I would rather have been swimming lengths for twice as long without pause.

Alas, it is a sunny day and right in the midst of resolution season, so at noon the pool filled up. I've mentioned before that I become extremely intolerant in the pool, and that does not seem to be something that is changing. I'm not trying to change it, either. I spent much of the hour I did manage to swim dodging the pair having a leisurely chat while ambling up and down the pool, mostly keeping out of the way of the guy who swam, turned and repeated (me).

In the middle of this, ungenerous thoughts filled my mind, often along the lines of "get out of my damn way," with a sprinkling of "your screw kick is horrible" for good measure. One thought is applicable to anyone gripped by resolution fervor but feeling the drudgery of slow progress, or the gradual sapping of their will, and it was exemplified by the slow pair in the pool: "stop kidding yourself!"

The duo were maintaining a steady and unfettered chat throughout their 'exercise.' They were not short of breath (they were nattering for England), and if they were warm at all, it was because the pool is too hot. They might as well have been having a cup of coffee instead. They certainly don't deserve any plaudits for working.

It's an easy trap to fall into: "it used to be difficult, but is easy now, it must be enough". Complacency is a surefire way to stop making any progress, though. If you have enough breath to maintain a conversation while swimming you are either phenomenally fit or you are deluded and doing it wrong.

As we get fitter, what was once hard becomes easier. Great! That means we have to work harder to get the same effect. It should never be trivial, it will always be hard work. Deal.

'Bad Luck' Math Fail

Most cancers are just bad luck, scream the headlines today, in typically irresponsible and ignorant fashion. The emphasis, of course, is on the entropic reality of genetics, and the implication is that you shouldn't care about the known bad things, because you might just be lucky (or unlucky) anyway.

This is bunk. It's stupid bunk, too, that preys on the human brain's aptitude for seeing patterns and reducing entropy.

We are all going to die*. We have very little control over what's going to kill us**. What we can control, if we survive long enough, is the extent to which life will suck as we get older. That suck includes, but is not limited to, cancers whose risks can be reduced, forms of diabetes, joint pain, difficulty walking, difficulty breathing and the sundry joys of an aging body.

Bad things happen. Bad things happen to good and bad people alike. Bad things happen anyway, no matter what. There is no way to prevent many bad things.

What you can do is reduce the risks of the bad things that you can prevent, and increase the odds of surviving the bad things you can't prevent. That's tricky, of course, because your mind's got to recognize the long term benefit to being healthier, and override the brain's desire for the shorter term benefit of spending less energy now.

You can choose not to get healthier, not to lose weight, not to stop smoking or whatever it is you're not doing, but for your own sake, and the sake of those around you, make a conscious choice. If you want to choose a miserable senescence or a terrible death, go for it. Don't kid yourself, however, that you're not choosing death when you are just taking the easy route.

At this time of year, resolutions abound. In a few weeks, resolve falters, and in a month or so, old habits prevail. Challenge yourself to choose to live longer, less painfully and more consciously, and when that resolve falters, remember why you made that resolution in the first place, and keep going.

* Probably.
** Excluding suicides.

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!

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.

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.

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.

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.

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.

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. 

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.