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.

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!

Food for Naught

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

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

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

Soon after I had the strokes, I couldn't care less; that I could feed myself was enough. Now, though, I loathe the idea that I might be thought the sort of person that would leave the house dirty.

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

Shaking Hands (Pun Intended)

A handshake is a significant social construct. Learning to shake hands as a young man was a defining process. Too limp, and you are effete, ineffectual or passive aggressive; too firm, and you are thuggish, an oaf or a bully. If your hands are clammy, you are a lost cause, doubtless cohabiting with the nameless horrors of the deep.

It is quite probable that most people have thought about this less than I did, but it's sure to have crossed everyone's young mind (and if it didn't, it should have). How you shake hands is the first tangible impression that you give, and it makes a difference. It is perhaps as important as being a good kisser.

So, it has caused me some distress that I have lost a measure of control over my hand, and consequently over my handshake.

When I was first dealing with the brain damage, I had very little strength in my right side, so I was acutely conscious that shaking my hand was like expecting a robust response from a towel; and at that stage there was nothing I could do about it.

Now, my hand and wrist are stronger, so if I haven't just been to the gym, where my grip on a dumbbell is often the limiting factor in an exercise, then I am more capable of delivering a proper shake. Except that I tend to miss.

Whether doubled or one-eyed, my vision is such that I have a hard time judging distance. Even if I make a good stab at the distance, my whole right side is bad at following instructions accurately: some of the motor control of the right side got hit. So, I'm likely to grip just fingers or end up in some weird contortion that probably signifies my intent to buy narcotics or cap someone.

You would be well within your rights to ask why I care. After all, am I not capitulating to the privileged hegemony of the able-bodied? Yes, I am. I want to make the hale people I meet comfortable with my disability and that means doing what I can to conform to the invisible, unconscious social norms that pervade the world. Like shaking hands.

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.

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. 

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. 

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.

A Reunion Tale

I went to the 6th Annual NY reunion of the GSMD, from which I graduated way back in 1997. It takes place when the school holds New York auditions, and it was fun to see my teacher, Martin, who was one of the only people I actually knew there. I think they have it at the same place every year, but I hadn't been since the first one, and asked one of the staff if the party was in the same room downstairs.

He behaved as though he thought I was a cretin, (and didn't know how to talk to cretins).

It doesn't bother me so much now, because I can't affect other people's perspectives, and there's no point in getting mad. I am vain, though, so I have been known to wear my fancy Keble College, Oxford sweatshirt (where I got my first degree), to try and forestall the assumption that facial paralysis automatically means retardation. It doesn't work.

Still, I got to sing the praises of the Acting program's training, without which I think I would have had a much harder time, and the food was tasty. 

Annual Update #1

As is typical, this update is a few days late, so instead of marking exactly a year since I first had a stroke, this is closer to a year since I had the last stroke. For those keeping score, or just catching up, I started with a big old haemorrhage of the pons (that would be a burst, blood vessel in the brain stem), and then over the next few days had a bunch of ischaemic attacks all over my frontal lobes (those would be clots), the largest of which was in my right frontal lobe, the rest dotted about the place.

None of the tiny ones was transient (small enough to go away before causing cell death), also known as TIAs or mini-strokes. However, they were small enough that their effects are likely too small to be noticeable, once the swelling (caused by the damage) went down. The best guess any doctor has had since is that my strokes were caused by high blood pressure. This seems reasonable, since it turned out that my blood pressure was easily high enough to cause my brain to pop. I am not lying when I say the paramedic in the ambulance said he "didn't know it went that high." Whence, my first bit of wisdom:

1. Check your blood pressure. If it's consistently over 140/90 then see your doctor and badger her or him until you figure out why and get some medication. If you're not already, start getting fit and staying that way: It will take at least a year before you get the beneficial effects reaching your blood pressure, but the other benefits come sooner.

They don't call hypertension (high blood pressure) "the silent killer" for nothing. If you read on to the rest of my progress report, think for a minute about the odds of any given bit of blood vessel in the brain bursting, and how a millimeter or two either way would have stopped my heart. I forget the numbers, but many people who have haemorrhagic strokes just die on the spot, and 37.5% die within 30 days (I remember those numbers).

Statistically, making it to a year is good going, although I did not feel the danger, and still don't. Perhaps because it's too terrible to contemplate having another stroke (they really do suck), or because I have focused my energies on being alive for another 40 years (I had the stroke at 40), but I simply don't entertain the possibility of another traumatic brain injury. That  doesn't mean, however, that I am not aware that I had a lot of help surviving the first year. Heck, I had help surviving the first hour. There is a Buddhist virtue of having the humility to accept charity, and I have learned a lot about that virtue through experience over the last year. Part of what I have learned is that you should:

2. Be generous in life. On one level, purely selfishly, generosity is a sort of insurance: if you have been generous, then should you get screwed by fate or misfortune, that generosity returns to you many times over. More than that, though, generosity and the compassion that feeds it, is rewarding in and of itself, because by practicing it (in the sense of doing it repeatedly), we become better people: We can like ourselves more.

One of the trickiest things to deal with is the label disabled and what it means to me now, as well as what it meant before I had a stroke. It has thrown some of my prejudices into rather sharp relief, before stamping them out (mostly). So much of my energy and attention is spent on "getting better" that it can be hard to step back and say 'actually, I'm physically kind of fucked, and may be that way for good.' I try to be honest with myself in these posts, but it leads to a discontinuity of perception that when I think and say, for example, "my balance has improved," that means that I've noticed a tiny improvement, but I still walk like a wretched drunk.

While I would be the first to say that I have been very lucky to have no detectable cognitive deficits (my mind is still fine), and that I have been very lucky that I am able enough to work out at the gym, and not be chair-bound or worse, it sometimes makes it harder. If you saw me, for example, waiting to cross the street, from the right side, I would not be surprised if you saw a buff, able-bodied guy, and would forgive you for wondering why I have a walking stick. I find myself thinking I don't carry this damn thing for fun, you know a lot, often while resisting the temptation to compare the durability of a tibia with that of 3/4" of willow. So, wisdom (or plea) cometh:

3. Make room for the guy with a stick. If only to protect your shins. Just as you have no idea why someone else is lifting that weight, that way in the gym, you have no idea why someone else is carrying a walking stick and may not even be obviously using it. What matters is only your response, and trust me, I am grateful to anyone who accommodates me and my disability.

I realise this has all been rather general, and is in danger of sounding a bit "poor me, my life is so saaaaaad nowwwwww!" but if it come across as whiny, you'll just have to suck it up as though you were watching Star Wars, and trust that by and large, I do not feel sorry for myself. Life is too damn short for pity parties. To specifics:

Vision
I still have one and a half syndrome, so my left eye does not track all the way to the left, and my right eye has a nystagmus when tracking right. (You're online, look it up.) This is not particularly debilitating, because I also have double vision (diplopia), which is debilitating. To have only a single image, I have an occluding filter on the left eye, which is just basically a cloudy filter stuck to my glasses. This lets me function, where double vision did not, but being monocular has its own drawbacks: sidewalks all look flat, I'm bad at judging distance, I have no idea how fast vehicles are travelling towards me, and so on.

Being monocular makes walking harder, but it's probably not as bad as the final piece of my visual problems, which is oscillopsia. That's just what it sounds like: my eyeballs oscillate.  It's not as crazy and fun as Mad-Eye Moody (I now have an intimate understanding of why he's nuts), but it is difficult. Because life should not have simple problems, my left eye seems to oscillate horizontally, while my right oscillates vertically. Also it's sometimes better, sometimes worse.

This all means that I read slower, and I read less, which is a considerable blow. When the oscillation is very bad, or text is relatively small, or I'm in a hurry, I can't read text directly: If I concentrate on a sentence or word, my eye skitters about. Instead, I have to allow the sentence to form in my mind, and read the words from a short term memory of the image. It's hard to describe, and hard to do.

The neurologists and ophthalmologists reckon that it's 'very unlikely' or just 'impossible' for any of these visual conditions to improve. I think that's bollocks, because since they first told me that, I've had independent (i.e. I'm not delusional) verification that they have improved. One thing I am sure of is that, if I believed the experts on this, then there would be no possibility of improvement. Instead I have learned to:

4. Be patient and persistent. My vision is not going to fix magically overnight; the days when brain swelling might subside and sudden improvement occur are over. If it's going to improve, and I have to persist in the belief that it will, then it will take years to improve. Just as it may be years before the hip flexor stretching I'm doing will be really obviously beneficial, and just as it took months for the exercise I've done to pay off. For the important things, patience starts at weeks.

Facial Palsy
Probably the most obvious sign of my stroke is the left-side facial paralysis (or palsy). A year ago, it was as though I had had Botox injected in exactly half of my face. Over the last 12 months, it has improved substantially, but I still have an obvious droop which affects my speech and is, frankly, ugly. I have never considered myself a particularly handsome adult, but until now, I have never made someone scream in shock and terror. (She was a dumb teenager, it was funny.)

The palsy extends to my left eyelids, and is, I suppose, one of the factors screwing up my left oculo-motor muscles (as described above; I should be clear that my field of vision is fine, and I think my visual cortex is fine, if a little stressed). The paralysis of my lower left eyelid in particular means that my left eye does not close properly, ever, although it tears just fine and is thus wet enough. 

So far, acupuncture has been the only treatment that seems to have had a concrete effect on the facial palsy. Again it is slow, and I now have the problem that the relevant muscles are well and truly atrophied, as well as not yet controlled by my brain, but it is working. So,

5. Do what works. Take effectiveness over expert opinion every time, whether it's diet, gym. gaming or health, if something is working for you, keep doing it. The natural corollary is to keep looking for what works. I have done this now with Acupuncture (shout out to Olo Acupuncture!) and I've done it with games: I don't play with people I don't like, and I don't play games I think are garbage. Which doesn't mean I think that the people I don't like, or the games I think are garbage are invalid or wrong. I'm just not in any hurry to take pills that have only marginal efficacy.

Right-side weakness
While the facial palsy is obvious, the right-side damage is less so. My bicep and quadriceps are above average now, and my body fat is well below average, but I am far weaker than I used to be. Worse, my right side is far less coordinated, which contributes to my poor balance. I can't, for example, stand on my right leg alone for any length of time (although I keep practicing). So I look pretty good (the six-pack is starting to show), but I have to or I fall over.

All the strength training, stretching, swimming, tai chi, Pilates and now yoga are aimed at making my right side more effectively functional. Almost all of my right side below the neck seems to have been affected, from muscles that lost all motor control in the brain, and in some cases, sensory input as well, to muscles that are working at a percentage of what they were, because some of the controlling brain matter was lost.

In essence, I am trying to accelerate the process of the brain learning to use muscle, a process that happens over many years of infancy and childhood, and is not optimized until adolescence. Of course it is tricky to do buttons up with my right hand; it takes a child four or five years to acquire the dexterity to do that. Again, I have to be patient (which I have never, I think, been known for), and persist with everything that human beings do, and at the same time,

6. Pick battles carefully and consciously. I think it is not OK to pick up the slack of my right hand's clumsiness with my left; in only five or six weeks, I am better at handling the bunch of keys to my apartment. It's still slow, and I still sometimes drop them, but that is a battle I am fighting and winning. I chose to fight it, though, because I am 41, not 81, and it is worth regaining full use of my right hand, even if it takes years to do so. Be conscious about whether fighting a battle is worth your time.

I say it is worth fighting these battles, and maintain that it is, but I am aware, and frankly scared, of the possibility that the tasks I have set myself may be Sisyphean. I may never consolidate any of the gains I have made. While I walk better, to walk well, I must pay attention to walking, down to the level of the muscles and bones involved. I find myself wondering if the childhood reality we forget is filled with the very boring job of learning to use our bodies and minds, and the idea that children are living the best years of our lives is total bullshit.

Maybe it's just that sometimes, I just want to walk casually up a street, chatting to my friends, and I can't do that yet. It doesn't really matter, I am under no illusion that life is or should be easy, or that the universe owes me anything; it doesn't. That makes it all the more important, though, to:

7. Celebrate your victories. All of them, especially the little ones. Remember to observe your victoriousness over entropy when you set foot in the gym, finish a set, rack a weight, walk up the stairs, do your shopping, do your laundry, even write a long update. 

Tremor
I have an intention tremor in my right side that is most obvious in my right arm and hand when I spill fluid or drop cutlery. It makes handwriting very slow and difficult, typing tricky, and is more of a nuisance than you would expect from a 'minor' ailment. I think it's getting better, but I'm not certain, and it's binary like the diplopia: big or small, it's just as debilitating. I don't think about it much, because I can't do anything about it, so why worry?

Balance
When you see me walking, it's like I'm really blasted. There is no danger of me passing any balance-based sobriety test any time soon. I believe this is mostly due to the weakness and lack of motor control in my right side, but it may also be vestibular (in the ear), which will be harder to correct for. I think this is improving, I think the tai chi particularly, but also Pilates and yoga will help keep it improving, but for now the ataxia is why I walk with a stick, and I am quite likely to be very, very sober.

Blood Pressure
A year and a few days ago, when I had just had a blood vessel in my brain go 'pop,' my blood pressure was measured at 250/160. If you halve that figure, you get to roughly human normal for my age. It would also have been decreasing since the actual stroke. Now, my blood pressure is under 130/80 consistently, but that's thanks to no fewer than four medications. I take a couple more that are more generally related to having a stroke, but four are just to keep my hypertension in check.

Finally, after many months of exercise, my cardiovascular system is showing some signs of one of the desired effects: my blood pressure is starting to come down. I still have no explanation of why it was so damn high, except "shit happens" and "genetics," but I do have an optimistic expectation that I will be able to reduce some of the pharmacological load on my system. A load that might have been substantially lower if I had understood that I had to:

8. Get fit and stay fit. Or die. In most cases, die younger, in more discomfort, and with greater indignity. Exercise correlates with a happier, longer life. Start now. Every time you choose to defer getting fit or losing weight if you need to, you are choosing to die sooner, and it is not worth it if you ask me. You may decide that being fat, or unfit, or smoking or binge drinking is worth doing, even if it cuts decades off your life, but make that decision consciously, and be aware that you are choosing pleasure now at the cost of years later. It's your choice to make, but I have lived side-by-side with people who had avoidable strokes, and had a largely avoidable stroke myself, and I would rather go to the gym.

That's it for the anniversary update. I may not have made it clear, but I welcome any questions you have. The anniversary party was good fun (even though I only had one mimsy bottle of beer)!

Balance

Balance has been on my mind a lot recently.

On an immediate and obvious level, my balance is very poor these days. Walking now is quite like walking while drunk off my ass; I stagger and weave and bump into things, especially if I'm not concentrating or I'm doing something extraordinary like talking. As an added bonus, I bruise easily, too (thanks, Aspirin!), so my upper arms are particularly beautiful. 

I can't tell why my balance is so poor (apart from the blindingly obvious because you have brain damage resulting from a stroke, dumbass). I maintain that my sense of balance is still good, that I know when I'm going over, but that it is muscular weakness on my right side and my brain still expecting dead bits to control my right side that fails to prevent the fall from happening. This is an optimistic view: it suggests that as I strengthen my right side and keep doing coordinated movement with it, my brain will gradually learn to use not-dead bits to control muscles that keep me upright, and maintaining balance will become less of a conscious activity.

This view might be wrong, and the neuroscience facts I learned 20-30 years ago would say that it is wrong. It's possible that I will always require conscious mental intervention to stay physically upright. Video game controls tend to give the lie to that thesis, though, if you've ever played a game obsessively enough.

Somewhere between the two is the possibility that it will take too long for an adult brain to sustain the level of intent attention that making balance automatic requires. In this view, I will reach a point where my walking is good enough for my brain to be satisfied, and it won't improve further. The trick to avoiding this seems to be to keep my mind dissatisfied and hope that it influences the brain to continue adapting. Same deal with my eyes: if ever I get too used to the double vision, the neurologists end up being right, and my vision stops improving.

All of which plays into another issue of balance: how much time do I spend on recover versus how much time do I spend just accomplishing the task at hand. I can stagger quickly, or walk more correctly slowly. This affects almost everything: when I use my right hand (for example typing this), am I doing so correctly or quickly? Correct doesn't become quick without time and effort, especially at 41. 

The intention tremor in my right arm and hand makes this choice even more pronounced: clearly, it's worth taking time to lift a glass or write with a fountain pen, concentrating on not having the tremor. Sometimes, though I'm just thirsty, or I just need to get a phone number down quickly and don't have a computer right there. That's when I have to compensate for the tremor, and hope that I'm not reinforcing it.

Furthermore, I think about work-life balance quite a lot. I am lucky to have the opportunity to focus on recovery, but soon I'll be looking for work (or student loans and work), and I wonder how I will ever have time to keep up the exercise I'm doing and sustain a paying job. Long before I had the stroke, I thought that American (and British) working practices were insane, and I think so even more now. Whatever work I do in the future must allow me enough time to return to full function.

Finally, I wonder about the balance to be struck between being disabled, and looking disabled. The facial palsy is a strange help here, as is the occlusion in one lens: I look as if I am disabled in the head somehow. That seems to be picked up on more than my walking stick, where although I look increasingly muscular and buff (huzzah!) I am actually more impaired by the physical than visual (probably; it's hard to quantify). The net result is that sometimes I do need help, but not necessarily where and when an observer might think. I'm new to the term and concept of invisible disability, and honestly never thought I'd be looking at it from this side. But then I never thought I was going to be disabled at all, more fool me!

9/11 Update

Monthly update time! It's 11 months since I had a stroke, and 11 years since I first wrote a piece called "Hello from a new New York" in the wake of the WTC destruction. The city is new again, but because my brain is damaged, not the city nor the psyche of the whole country.

I've written quite a lot about the progress I've been making in my effort to recover, and with the occasional exception, I hope I have been as positive as my recovery to date has merited. I return home to this city in a lot better shape than I left it, thanks in no small part to the friends and family who succoured me when I needed it most. But I realise that I have had a shorter-term goal over the last months: be well enough to return to New York.

That goal has been accomplished, but it has left a gap I didn't know had been filled until I felt the lack. I am not joking, nor lying when I say that I intend to walk on my hands again, but as a goal it is far more distant than I need, and although I can keep working towards it, it's not enough. Likewise get stronger, swim further, or walk better are too nebulous to be of much use. I'm working on all those things anyway, because I don't like the alternative.

I have an idea what the new goal should be, and it's almost orthogonal to recovery, but I suspect that if I fulfill that goal while doing all the other stuff I'm doing, then it will prove worthwhile. In the meantime, suggestions (facetious, fanciful or fantastic) on a postcard...

It's hard to judge my recovery compared to last month, since the context shift has been so huge. Not only, for example, have I had to deal with a new gym with weights in lb. not kg (arithmetic is hard!), but I have redesigned my workout to use more dumbbells,  which are more challenging to use anyway, go to Pilates three times a week with a much more fierce instructor, and make do with a murky, chemical-filled 22m pool. Who makes a 22m pool? People who hate, that's who.

Easier instead to look at some of the victories and challenges New York has had to offer in six days:
- I got around on the Subway, at first with a friend, but after the first day on my own. Victory! Some interchanges are hard (Canal St., 59th and Lex), and by and large people are even worse at offering me a seat than in London. I think I am not helped by the fact that I look in pretty good shape. Conversely the facial palsy helps here, as does the stick, but I find myself thinking "I'm not carrying this thing for fun, you know!" rather a lot. Perhaps I should get a t-shirt.
- I took my laundry in and collected it. Victory! The first non-food thing I purchased in NYC on my return was a laundry bag with shoulder straps, which I also used to pick up friends' CSA share. Both the veg and my laundry were bastard heavy. Much more so than a year ago. Manageable, but tough.
- I went shopping on my own to Pearl River, and got what I needed. Victory! I was so damned tired though, after Broadway and the Subway, and cooking myself dinner that I was in bed at 9:30pm, and asleep by 10pm. Not to mention the fact that I had had to resort to the Chinese emporium for white people because my vision was too poor to pick out a useful store when I had an hour to spend in Chinatown. That has a lot to do with the parlous state of my glasses (new ones arriving soon!) but the fact remains that my vision is pretty poor.
- I navigated a busy Brooklyn street in the dark and wet. Victory! I was with friends, and I nearly went over once, but caught myself before either face-planting or hitting anyone else. It was hard, and substantially harder after even one meagre glass of wine. I have become a very cheap date.

One of the things I have been wondering about has been prompted by the Paralympics, where there is a class for moderate impairment of the whole of one side. I have that. It remains to be seen whether I am sufficiently impaired to qualify for the actual Paralympics in RIo, and at 45 I shall likely be too old for any of the sports that interest me (i'll remain a spectator for the wheelchair rugby, thanks), but it has come as a surprise to me that I can work that hard. 

Qualification aside, what I have been wondering is essentially whether it gets any easier. When I walk, swim, or even sit upright I am consciously getting my right side to work. I am better at it, and am better at doing something else while spending some concentration on not falling over, but at a conscious level, I am working. This is visible in many ways, but two are most obvious: if I am distracted when walking, I look even more drunk than normal; when I'm eating, I tend to eat to the exclusion of all else: it is quite difficult to multitask when I'm cramming foodstuffs in my pie-hole. I don't yet know if any of the gains I have made so far will ever be automatic. I believe they will, but that it will take years, and I can't hide from the fact that I may be wrong.

This makes it occasionally galling to be in good shape. I have buffed up because I had to. If I hadn't, I would still be using a walking (Zimmer) frame, and labelled a falling risk. My legs look great because it takes a frankly ridiculous amount of effort to stand upright. Make no mistake: I am very happy to be in better shape than I have been for years, but to be in good shape and be disabled regardless challenges a lot of assumptions in the able-bodied, and I'm afraid that Americans, even New Yorkers, are pretty ignorant about disability, vide the almost complete lack of Paralymic coverage here..

So, New York is as challenging as I thought it would be. It's providing me with lots of opportunities to master my fears, both rational and irrational, as well as lots of opportunities to be humbled and grateful, both to strangers and to friends. Who could ask for anything more in life?

Home At Last

I arrived home in New York last night. Of course, there's no going home again, things were naturally more different in me than in my apartment and neighbourhood, but it felt great to be sitting at home, chilling on my couch with some Lebanese salad, chatting with Bret, almost as if the last eleven months hadn't happened.

That's a danger: slipping back in to the same patterns of living that ended up with me having a stroke (by which I do not mean chatting to Bret). Given how stark the consequences are when I don't exercise, and how within a day or two, my motor control gets worse and I start to walk worse, and so on, I don't think that's going to happen.

Negotiating JFK was interesting, if awkward, given that my bag was horribly heavy (so much so that I wasn't able to get it all the way up the stairs; another one I owe Bret). 

The best part of it, from my perspective, was immigration. Since I was out of the country more than six months, I could be considered to have abandoned my residency, and they might have taken my Green Card away. Since it took me over nine years to gain residency and I have every intention of becoming a citizen when I can, this would have been a very bad thing.

I was prepared, though:  I had medical statements and similar documentation, including a stellar letter from my NHS physio, to show that I had good reason to be out of the country so long. If necessary I had them to hand for the border agent (a veteran of the WTC rescue mission), and my friendly lawyer took a break from evicting grannies to find out that if they did seize my Green Card, I could get it back.

The whole thing should have been very worrying, and I was certainly concerned; I had prepared all the paperwork, after all. But it didn't really ever bother me right up until the moment of truth. I managed, instead, to identify whatever happened at the border, given that I had done the prep, was outside my control and beyond my ability to influence further, and so there was no point worrying about it. So I didn't.

When it came to it, the officer was friendly and helpful, and didn't want to see any of the evidence I had to hand. I'm still a legal permanent resident, on the long road to citizenship.

Subsequently, it has occurred to me first that my facial palsy and walking stick are fairly big signs that are rather hard to fake. Second, that the facial palsy in particular provokes all sorts of assumptions. Most often, and most irritating, is the assumption that because my face is partially impaired, I must be stupid. I say that it is the most irritating, because it really does not thrill me to be thought stupid, but it's also, sometimes, to my advantage and when that's the case, I make the most of it.

I'm not saying that I hammed up being a dummy for the agent, nor that he thought I was mentally impaired (we talked, after all, about working for Google), but to be perceived as less threatening because of a disability is sometimes quite useful, and you had better believe I'm going to use it, because there's quite enough of everything else that got harder.

Anyway, it's almost 7am in New York. It's going to be a hot day, and I'm off to sort my gym membership out.

July Update - Planning My Return

Well, holy crap, it's been nine months since I had the first stroke, so it's that time again. Before the thrilling status update, though, some news or announcements or whatever.

First, I'm aiming to be back in New York early September. There will be some fun times with immigration (they're likely to take away my green card and then give it back), but I'll be back in the city about 11 months after having the stroke, and less than ten since leaving the US for this stage of my recovery.  There are a lot of things I miss about NYC, not least all of you all (in New York), which brings me to:

Second, save the date: 10/11/12 the first anniversary of my brain events is as good a time as any to have a party, especially since it's such a nice date. That's October 11th for you heathens with a sensible date format. More details to follow, as I make them up.

Third, it seems that NYC thinks I am disabled forever, presumably because of the whole brain damage thing. I'm not sure how I feel about that, because although I am currently quite evidently impaired, That's not going to last forever; just a really long time. I guess I don't sit as comfortably with the 'disabled' tag as I thought. On the other hand, I paid a shedload of tax so if there are benefits, I'm the queen for them. I'm also enrolled in Medicaid, which is a good thing for when I get home. No more Mr. Uninsured for me, as I'll be making sure i'm covered for the rest of time.

Finally, I've been thinking hard about what I want to do for the next forty years, and how to make it possible to sustain the level of physical activity I now need. I've come to the conclusion that retraining as a physical therapist (physio in English English) is the way forward, specializing in neurology wherever possible. This is going to be tough, because my two undergraduate degrees are largely useless (except for statistics), so I will almost certainly have to fill a bunch of undergraduate credits before I can apply for the DPT programs sensibly. That's not such a bad thing, since I couldn't in good conscience say that I'm physically capable of the work required today, but a year or two of being an undergraduate would give me even more time to recover. Paying for it all remains an open question.

So, on to the stroke recovery round-up. I'm getting stronger, my walking is better, my face shows positive signs, I'm certain my double vision is improving, the tremor has decreased slightly, but it's still a giant pain, and I'm in much better spirits. Acupuncture continues to be beneficial, as do Pilates and Tai Chi. Perversely, realizing that as of today I couldn't physically do a DPT degree has made me more determined than ever to be fit and strong enough and to have the motor control I will need.