42

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

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

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

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

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

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

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

Eighteen Months

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

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

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

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

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

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

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

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

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

Spring 2013 Monthly Update

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

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

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

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

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

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

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

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

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

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

Valentine Update

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

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

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

To the update:

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

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

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

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

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

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

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

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

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

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

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

Meditation: M, T, W, Th, F

Tai Chi: M, T, W, Th, F

Stretching Goal: after every gym - Th,

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

Ça Continue

Monthly update time! Once again there's mixed news, although its less horrible than last month by far. The bad news is that, thanks to a couple of months of depression, I've put on a grotesque 9kg/20lb, and I've gotten weaker all over, which I guess is what happens when I don't to move anything but my jaw.

Time has been moving pretty strangely for me recently; I was reminded just how strangely last night when Bret mentioned that he'd been at his job for two years now. To me, it feels like a few months since he started, and not in the usual gosh, how time flies way. I will be 42 this year, but I feel like I just turned 40. In a way, this time of recovery feels unreal, the deficits I have feel somehow not me although I find it impossibly remote to recall what 'good' or 'proper' movement feels like.

As well as the oddity of having my (wonderful) sojourn in the UK feel like a dream, there has then been the months of depression. Again, I've been lucky in that it wasn't completely crippling, and I've had a lot of friends and acquaintances reaching out to support me. I hope they understand that, too often, it's been more than I could manage replying, but I will reply in the end.

For me depression has been like a sheer black veil, so fine that it's imperceptible. Each day another veil, with so little change from the day before that it's hard to tell that the world has gotten a little bit darker. Eventually, I am in a profound blackness that feels quite real, and impossible to break. It's shameful to discuss because it is so hopeless and so ridiculous. Each time someone contacts me, it's like a small hole in the veil; and if I reach out, the veils are insubstantial and I punch a hole in the darkness and let some light in. The veils keep drifting in, though, day by day, and sustaining an upbeat view on life is a Sisyphean task.

Happily, modern psychopharmacology is stopping the darkness from gathering, and gradually lifting the veils. I was reluctant to take SSRIs (or any mind-altering drug), because it feels like such a pathetic concession of defeat. My doctor pointed out, though, that I had chronic depression, I had good reason to be depressed, and over half of stroke patients have some form of depression. 30 days later, and I am glad to be taking the happy pills because I feel more like the person I was three months ago than the miserable sod of last month.

I know that long term I do not want to be taking anti-depressants, but I also know that I have to build far stronger habits of mind and body before I stop taking the nice little pills. They're a crutch, but one that I need right now, so I'll use the crutch, just as I walk with a stick.

The better news is many-fold: The improvement in my face has continued so although 15 months later I still can't smile with both sides of my face, I'm optimistic that eventually full control will return. I'm also sure that my double vision is slowly improving, but that's so slow that it feels more delusional than ever. Fortunately the idea of my vision being this wretched for all time is still untenable, so I'm resisting the idea that I am deluding myself.

Further, I think the right-hand side tremor / dysmetria is improving a bit. While it is still gainfully and painfully difficult to write, type, use keys and so on, I have noticed I am spilling less coffee while I walk up the street, which is a good thing.

That may, however, have been caused by the best improvement, which has been in gait. It's surprisingly hard to tell where the improvement came from: my hip is less loose, but my foot is more responsive, too, and I noticed on the cycle at the gym yesterday that my right knee's tendency to deviate to the left was almost gone. What was so striking was that the improvement came overnight, at a time I was feeling very low. I wonder if the anti-depressants had an effect, or it was just the right night for a brain connection to be made. Regardless it, once again, gives the lie to the idea that there's no significant recovery to be made after six months. That's just total horse shit.

I guess that's the moral of the month, especially if you're recovering from a brain injury: you may be depressed, that's OK, get help, and never doubt for a second that recovery continues: I had a step-function improvement that was clearly neurological, overnight, at 14 months. I am not extraordinary, most doctors are just wrong.

Tired

First things: some good news before the rest of this post depresses the crap out of everyone. There's now visible movement in my left cheek. It's not the whole cheek (or indeed the whole of my lips), but it's a good sign. I am also confident that my double vision continues to change; it seems to me that the displacement is slightly less diagonal and slightly more vertical. Given that I can now see what I have been feeling for a while in my left cheek, I don't think I'm deluded.

Now, the less-than-good: I've been profoundly depressed since late October. Medicaid got renewed (although their inncompetence is mind-boggling), so I have a prescription of happy pills to help turn me back into someone other than a moping ninny, but they sure as hell haven't kicked in yet.

The chronic depression is not unusual after a stroke, and even though I know that what I'm feeling is partly a biochemical thing, knowledge doesn't do anything to allay the sense of futility I have. Back in the UK, I was working towards coming home, but now I am here, I have to ask what now?

It would help, perhaps, to believe in anything other than entropy, but I don't, and having a stroke certainly hasn't changed that. Knowing that I have occasionally helped people, amused people now and then, and been liked, and even loved, is some solace, but that doesn't change the sense that had I died last year I would have been mourned and perhaps missed, but little if anything would change for anyone.

This is far from easy to write, both because I suspect my current rather bleak view on life is infectious, and because it's hard to admit how utterly useless I feel most of the time, but I always intended for these updates to be as honest as I could manage, and skipping is a coward's option. I've been working to smile to for over a year, and all I have to show for it is a twitch in my cheek. My balance is terrible, the tremor remains, and the worst is that it is now so hard to read. I'm not sure what's left to me, or of me.

Being with friends helps, because I have to sustain the front that I'm doing OK, that I am managing with everything, and if I practice being OK with how broken I am, maybe I will be. It is weird writing about how bad I feel, knowing that many of the people that I work so hard to convince that everything is going swimmingly will read this. The truth is that I need help and I am tired of not asking for help. I hate that I need help, I hate that I am so faulty, but I need convincing that life is worth living.

Before anyone panics, I am hardly about to go and top myself; that would be rude, stupid and awkward; it would cause unnecessary pain, and would be a shitty thing to do to whoever found me. I think it's very uncivilized that our society has no acceptable way of saying I think I'm done here, but it doesn't, so that's that.

(Not surprisingly this provoked a response from many people, and the reaction was universally helpful. I'm doing better now (Jan 2013), but can't deny that I was doing very poorly in November and December of last year.)

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)!

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?

August Update

Oops, the 10-month update is a bit late, but I promise there's no cause for alarm! Instead, with the prospect of the next update coming from back home in Queens, things are good, all things considered. Of course when "all things" includes brain damage, the devil is in the details.

Generally, I'm doing well; my Dad, stepmom and sister have been away for a few weeks, which has given me more of an opportunity to do things for myself that were once routine, but are no longer. It turns out, for example, that a tremor does not help with egg-beating, so I shan't be making chocolate souffle until I have some motor control back. Similarly, heavy shopping isheavy! And fresh fruit and veg are not light.

Even with my newly-invigorated drive to eat well, I get caught out by supermarket trickery, not sadly limited to the "2 for £3" variety either. I've been buying granola at the local health food shop, but when I saw Sainsbury's (a big chain here) own-brand kilo bag was half the price, I didn't think twice. How bad can granola be? It turns out that, relatively speaking, very bad. It may be half the price, but somehow they have managed to triple the amount of saturated fat, make it lots sweeter, and disappear the nuts. I'll be going back to the more expensive granola that won't give me diabetes, thanks.

Many things are still much slower than they were, and its been especially noticeable in the kitchen. I've avoided finding the whole process depressing by caring far less about some ingredients. Finely chopped onion? This is as fine as its getting until I can hold my knife hand still. I should cook smarter and prepare meals to eat tonight and reheat tomorrow, but I end up eating quite a lot, so that hasn't happened much. I'm also slowly losing weight, while eating what feels like a ton, which tells you perhaps how much exercise I'm getting.

Acupuncture continues to make me feel better, and is the major contributor to the improvements in my face. The paralysis thing anyway; the needles can't make me beautiful! I can feel, and just about see more muscle activity in my left face, so while it will be obvious I had a palsy for some time, I'm confident that eventually my phizog will be back to parity. I chatted with someone who'd had a stroke four years ago at 42, who had no obvious sign of the palsy he had once had, but it was soon obvious that his was due to brain swelling interrupting the nerve, rather than my case where the nerve is OK, but routes to tissue that is dead.

There's every sign that living brain tissue is taking over though, everywhere I've been affected. I'll have definitive proof that my double vision is improving when I go back for another eye exam. Either I'll need less of a prism, or I'm delusional. Unfortunately, the double vision is a binary kind of thing, like the tremor. They are both improving, but while they exist at all they make life interesting. I am a little tired of sidewalks appearing flat when they are not.

I think at this point, my brain is working to adapt itself to having a bit missing. At the same time as its putting in place new pathways to activate muscles from my right little toe to my neck, it still sends expectant impulses to brain matter that isn't there any more. I can know that I'm leaning to the right, and fully expect the neuro-muscular bit of me that learned to deal with that lean at the age of one+, but unless I do something consciously about it,  I will soon be on the floor.

Eventually, I won't have to think about it at all, but walking, for example, is still far from automatic. It's certainly smoother and faster, but I have to pay attention. Sadly this means I meander when walking and talking. Stagger would probably be more accurate. I do not chew gum.

All of which means its worth it going to the gym as much as I have been; it's been worth stretching for up to an hour six days a week. Going to Pilates class has been good for me, so has the ab workout, so has doing some Tai Chi every day. All of these things have made me work muscles in ways that they're supposed to be able to work, hard as that is sometimes, and as a consequence laid down neural paths that I will be reinforcing and one day optimizing for years to come. Getting quite buff at the same time doesn't suck, either.

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.