Tuesday, December 11, 2012


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.)

Friday, October 26, 2012

Morning Sickness

For a brief moment this morning, just as I woke up, I felt a pang of longing to awake for real and be normal. To see with my usual myopic single vision, particularly. But there is no going home again, so I stamped on that thought pretty quickly and went swimming. It hurt, though.

(Looking back, as I transfer these posts from Google+, the warning signs are very clear: I was just about to sink into a profound depression. At the time, it was not obvious.)

Wednesday, October 17, 2012

Starting Strength and Stroke

Lest you think I know what I'm talking about (or that anybody does when it comes to non-geriatric stroke recovery): This dude had a stroke with similar gross effects to mine, and has made similar gains using Starting Strength. In fact in some areas he's done better: his balance has improved more than mine. Probably because I am very bored by many of the balance exercises (which is why Tai Chi works well... not boring). Anyway, I was interested.

Tuesday, October 16, 2012

Exercise, Meditation and Brains

I've been wondering about this thing that we do; it's not just me, because I've heard others describe basically the same thing, so I'm going to go with it being universal. If it doesn't affect you at all then please say so. In my case, it applies most clearly to meditation and exercise, but other things too. Things that I like doing, even.

Both meditation and exercise make me feel better. I went to the gym this morning, worked hard, and feel better than before I worked out. Both things are work, though, or perceived as hard. As a result, I don't want to do them. Right up until the moment when I see myself as starting them, I'm looking for reasons not to do them. Despite the fact that I know I will feel better for doing them.

I want to crush this aversion (then bottle and sell the crushing formula for a gazillion moneys). So far, the best I can do is strategize to mitigate the effects, which is little more than hacking, and not a real solution. The  strategies I use most are:

* Trick my brain into starting before it knows what's going on. This only works about once a day, if I get up and am halfway to the gym before I have quite woken up.

* Trick my brain into perceiving the start time as sooner. The moment I start getting my gym kit, or touch my meditation stool, then I have started. I haven't quite managed to extend that forward.

I suspect there's some neat bit of neurological cruft left over from our evolution that doesn't reward deferred benefit adequately, so I have also been crudely trying to hack my brain while I'm at the gym: moving some heavy thing around is hard, but I am trying to concentrate on the good feeling in muscles immediately afterwards.

Perhaps I should also spend more time 'miring my guns.

(There was some good commentary on the original Google+ post.)

Sunday, October 14, 2012

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:

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. 

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?

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)!

Thursday, October 11, 2012

A Year Not Dead

A year to the day since I had my first stroke, and I'm not dead yet!  The odds were not great, but I was not one of the 37.5% who die within 30 days of having a brain haemorrhage, and I've beaten the odds on making  it 12 months. So sod you, statistics!

Tonight I'm celebrating with a party, and tomorrow I'll post a big update.

Monday, October 8, 2012

Anatomy of Movement

Recently arrived from Amazon, Anatomy of Movement, by Blandine Calais-Germain, and its companion volume of exercises. They're great books, lavishly illustrated, and both volumes are serving me well, in conjunction with all the other exercise I'm doing.

That the exercises are helpful is no surprise: they're well explained and well illustrated (with drawings and photos--terrible hair), cover stretching and strengthening, and have accurate correlations between exercise and specific muscles. There are plenty of muscles affected by the stroke that are not obvious in their failure, although the effect is pretty evident (I fall over), and the volume of "Exercises" helps target them where free weights, Pilates or yoga cannot.

Slightly surprising, though, is that gaining a better understanding of my own anatomy from the first volume has been useful by itself. I have mentioned in the past that every action involving my right side has a conscious component: I can't simply raise my leg, I must think about it. It turns out that knowing what the principal muscles involved and not involved are is useful, and seems to be helping my brain recover.

I'm pretty sure that the deep muscles of my spine are affected, for example, but my brain has not had to work on them for 40 years or more. Knowing what they are, and having tools to exercise them will help with getting them more brain time, which, I hope, means less falling over.

Standing Desk

I made my own with random bits of wood and old computer text books. It's taking a while to get used to, but the change was worth it.

Wired Science: Get a Standing Desk

Monday, October 1, 2012

Exercise Made Easy

Since +Terry Romero and +John Stavropoulos said they've been getting back to exercise with [my] swole kick ass workout, I think it only fair to come clean about what I'm doing, and the simple rules of thumb I've been using. Bear in mind that my goal has been to get fit and healthy, but I have to be patient with my post-stroke body, so I haven't set any time or weight targets.

If I can't do a set of 8 reps, with good form then the weight is too heavy.
If I can do a set of 12 reps with good form then the weight is too light.
If I hurt and thus can't function the next day, the weight is too heavy,
If I get the weight wrong but do a set anyway, i.e. the weight was too light, then that's the set I did that day. I know better for next time.
If I did better than the last time on at least one exercise, then that is progress, and that's all I ask for.
If I look at what anybody else is doing, then I'm an idiot: I have no idea if they even have a clue, nor what their goals are, nor what their history is.
If I am comfortable, rather than putting in a somewhat uncomfortable amount of work, then I am doing it wrong.
If I am not certain how to use a piece of equipment, then I ask. Not only are there people paid to tell me, but they are also glad to help.
If I weigh a pound or two more or less, I don't care. A 5-day moving average is a better measure. (Same with BP which I track more.)

The first two are really the core of what I have been doing when it comes to free weights. I'm doing an upper body/lower body split program, with each half twice a week and going to Pilates on the other days. I was swimming on the Pilates days, but my stuff got nicked; I'll be back either when I find my old goggles, or can afford new ones.

For a workout, I warm up for 5 minutes on a recumbent bike (the other kind hurts my ass), always following the rule about not getting comfortable. If you can read while doing anything at the gym, you are doing it wrong. Then I go straight in to the weights; I'm using dumbbells more than anything else, because that works my stability most. I do two sets to go for a low volume, high intensity program that is quite efficient. The first is a warm-up set at about 60% of the weight of the second set, and I'm aiming for muscle failure in the second. Then I add some cardio: rowing machine on lower body days. 

Finally, I stretch for about 40-60 minutes a day, covering all of the major muscle groups. This seems pretty essential for me, if I want my right side to function correctly, but unless you want a laughable range of motion, you will stretch, too.

Because I'm a big nerd, I want to be as efficient as possible, and to be measurable. Two sites in particular have been helpful: +Fitocracy, and ExRx. Fitocracy has been great for keeping me honest, but also for tracking what exercise I did at what weight, and allowing me to see clear improvement, week on week. The community is cool, and knowledgeable, and has something to offer pretty much every fitness goal. You can find me as Ironcinder.

ExRx is an equally valuable site that has imagery for almost every imaginable exercise. When I put together the program I use now, I went there. When it's time to change it up, I'll go back. Also useful was the /fitness sub-Reddit.

Allow months to pass before you feel the benefits. Avoid pain, concentrate on feeling good (because you should be), and don't be crazy: I loved my uncle, but I'm still mad at him for having a fatal coronary on an exercise bike. There is no excuse for not starting now. Your future self is more likely to be around to thank you.

Wednesday, September 26, 2012

Can Do vs. Can't Do

I focus a lot on what I can do, and try to stretch that every day. Interacting with officialdom, like trying to fill out a Social Security application for disability insurance makes me pay attention to the ways I can't do stuff that is ordinary. It's a disheartening process to acknowledge that, sure, I can lift a 50lb dumbbell the couple of yards it takes to get it to a bench and back, but I couldn't carry it downstairs for love or money. Nor stand for six hours. Nor can I read long detailed text with ease. That last is the hardest admission to make at the moment.

I suspect there's a missed opportunity in the way the social security net is structured here. To be clear, I only pass the first hurdle because I paid a lot of tax when I was working. But the insurance incentivizes staying disabled, instead of rewarding recovery. This seems medically and economically dumb.

Whatever. The conflict between thinking optimistically about my capabilities and thinking realistically about my capacities is raw today.

Monday, September 17, 2012


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!

Thursday, September 13, 2012

Tales from Stroke-Land: The Scream

I got screamed at on my way home today, by a precious little darling who attends the Frank Sinatra High School for the Performing Arts. I don't mean abusive yelling screamed at, I mean OMG there's a monster, run away! screamed at.

How did she know?

Tuesday, September 11, 2012

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?

Friday, September 7, 2012

First Full Day Back in New York

Yesterday was busier perhaps than I had planned, but a good first full day home. I re-awoke my gym membership from suspension, worked out for a bit, and checked out the pool on the other side of the block. It's not an ideal pool, but it will do the trick, and it's not insanely expensive if I pony up for a year. In fact, the gm and pool memberships combine to slightly less than what I was paying in Dorset. Sadly, the staff at the Sherborne Sports Center were a lot more awesome than much of the staff here, but the gym is friendly without being too full of scary scary muscle Marys. Except me.

Then onto lunch and a delicious Thali, and a little shopping to get a laundry bag that has two back straps. Essential for balance from now on, and I had a secondary task to do with it. Through al this, I had a sanely solicitous guide. The 59th St interchange can be hairy if you're able-bodied, so it was good to have someone with me for the journey. 

Home after that, and immediately on to pick up the CSA share that some other friends cant pick up this week (because they're in CA) using the aforementioned laundry bag. It was still bloody heavy, but quite manageable, and promises to be delicious. The apples already are. As soon as the next sign-up period rolls around I will be joining. There is no good reason not to.

Finally I was going to put my feet up and watch Murderball only to have a moment of sheer, unadulterated terror: I was not sure I could remember how to work the TV and attendant bits. The ignominy! It turns out I remembered just fine, Muderball isn't available streaming, it's at the top of my queue now. and I watched the School for Scoundrels instead, which was charming.

On balance a good, full first day back with exercise, friends and a final flop.

Thursday, September 6, 2012

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.