Thursday, January 31, 2013

I Have It Easy

My life has its moments, right now. Getting around is not automatic, my vision's terrible, and I can't think of a single thing that has not got harder since having a stroke; but I have it pretty easy, and there is no way I'm going to forget that.

It could certainly be easier: I might have died which would have been pretty straightforward (for me, at least) or I could have had TIAs, and already be much closer to my old level of function. I could also have been managing my blood pressure, fit and sleek, and not had a stroke at all, but that didn't happen.

Obviously I was lucky to have good friends and a supportive family; I was lucky Bret was around, and to be taken to Mount Sinai hospital, where I got great care. In fact I was, in the global scheme of things, very lucky to be eligible for the NHS* and then Medicaid, and to be living where I do. If I were in the majority of the 7 billion people in the world, I would be hosed. I'm also relatively fortunate to have had a stroke at 40, not 60 or 80, when it would be that much more difficult to recover.

When I think about what happened at an anatomical level, I definitely got lucky. Bearing in mind that at least two arteries ruptured, probably from the pressure, I was fortunate indeed that the damage wasn't to bits of the brain that control my heart, or lungs, none of which is very far away in the brain from the damage I did sustain.

I am able to walk now, and from the earliest days have been able to clean myself and use the bathroom unaided. My cognitive faculties are unimpaired, as far as is testable, and my memory seems uninjured. Each of those is significant to me; I'm confident that life would be intolerable for me if I knew that I was simple now, or had to have help wiping my arse. Arrogant, perhaps, but I would not want to live like that. Stroke makes you think of these things.

The cause of my stroke remains officially undetermined, but was most likely high blood pressure (check yours; if it's high get fit and get it treated. Now!), which was very high and is now under control. That's also lucky: hypertension is treatable, manageable and you can totally deal with it.

However I am reminded frequently of friends who don't have it so easy. People I met in recovery, or afterwards that have deficits that appall me. The teacher who spent much of her life showing kids how to read and write, and then taught other teachers, but lost the ability to write with her stroke. She spent a year having to re-learn how to write.

Then there's my friend whose strokes were the result of a rare form of a disease (one I was expensively tested for), sufficiently rare that it went undiagnosed until his third stroke. Each time he was recovering, he had another stroke, until the doctors figured out what was wrong with him. Then, to treat the underlying condition he had to take steroids that wasted his muscle. He couldn't make any physical progress.

My life has been challenging for a little while, but I have been able to look at the changes in my body and use them to keep my spirits up, even when they didn't directly relate to my recovery. I am lucky indeed that I can use my mind to fix my brain and get better.

Not everyone has it so easy.

* NHS: The UK's national health service which was fêted in the Olympic opening ceremony, but edited out by NBC; Too socialist or something.

Tuesday, January 29, 2013

Timor Tremoris Conturbat Me

I am not bothered by the prospect of death at all; the fear of it doesn't happen to me, let alone disturb me as it did the medieval Catholic poets. I've seen death close up, my own and others, and I know that I'm doing what I can to defer my demise as long as possible. What does bother me, is the tremor and fear of it.

My right hand and arm is the most obvious place that the tremor occurs. I have what is called an intention tremor, which, if you look at the linked Wikipedia page, is "very difficult" to treat. So there's the fear that it will never go away, and I will always write terribly with a pen, always spill drinks with my right hand, and so on. I'm afraid that the brain damage's effects will be permanently with me.

The fear is more extensive though because the tremor--or at least something like it--is more extensive. To start with, my right leg shakes. This is similar to the sort of shaking that happens with muscle fatigue, and usually goes away when I press down on my right heel. My concern, though, is that the tremor extends to my leg as well, but that genuine muscle fatigue is masking it.

This isn't as crazy as it sounds, when you consider what is perhaps the scariest trembling that I have, which is in my diaphragm. My breath shudders as I inhale, as though I am taking a series of gasping breaths, instead of one smooth inhalation. I notice it when I'm meditating (it's a distraction!) but it's obvious to observers when I inhale involuntarily after sighing.

The fear that my breath will always be juddering is horrible, and I have to try to ignore it. It was terrifying to realize in November 2011 how damaged my voice was, and it's scary now to contemplate the possibility that I will never attain the vocal facility that I once had.

The most effective treatment seems to be acupuncture, so far. Nothing else has worked. So thanks to the donors who've made more needles possible! I'll talk about the needles soon, I promise. 

Sunday, January 27, 2013


I met four out of five goals that I set myself this week. I lost 1lb, which is less than I'd like, but in the right direction, so it will do. I exercised every day this week, sat in meditation every day this week, and wrote some of Project #1 every day. I'm happy to have done all of those, but don't want to change them for next week, because although they are lowball goals, and I exceeded them, I would rather have a consistent, simple set of goals for several weeks running before making them any harder

The idea is to sustain what I'm doing, and sustaining these activities for a long time is more of a challenge to me than making them more challenging for the short term. In other words, I think I'm more likely to succeed over the long haul if I'm gentle to begin with.

Besides, there's the goal I didn't meet, which was to stretch after each gym session. I'm going to leave that where it is, and keep working towards it. I have an idea where the failure point is (it involves hot coffee and cold weather), and want to see if I can get back to making stretching regular.

UPDATE 1/28: I changed my mind. I'm going to add another lowball, easy target: do 5 minutes of Tai Chi every day. It's only 5 minutes, it's clearly beneficial, and I stopped doing it... why?

Weight Goal: 170lb. Last week: 197lb. This week: 196lb

Exercise Goal: gym 3-4x, swim 2-3x - This week: Monday: swim, Tuesday gym (upper body), Wednesday swim. Thursday gym (lower body), Friday: swim, Saturday: gym (upper body), Sunday: gym (lower body)

Meditation Goal: sit every day - Days sat: Every day this week!

Stretching Goal: after every gym - Tuesday

Writing Goal: write at least one word a day on Project #1 - Monday: 259, Tuesday: 297, Wednesday: 463, Thursday: 284, Friday: 303, Saturday: 14, Sunday:130. Total: 1750

Friday, January 25, 2013

A Reunion Tale

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

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

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

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

Thursday, January 24, 2013

Brain Experiment

As part of my effort to transform my life so it's not defined by brain damage, I'm trying a brain experiment.

People often waffle on about the 'power of positive thinking' and it seems to me to me to be so much superstitious magical thinking rubbish. By contrast, however, I am convinced of the brain's plasticity, and our ability to change the patterns of the brain--our habits--by the action of our conscious mind.

So here's the experiment: every time I think "Ugh. Gotta go to the gym (or pool)." I am going to stop myself at "Ugh" and change that into "Yay! Time to go to the gym (or pool)."

It's going to be easier with the gym than the pool, because although the gym tends to be more physically strenuous, the pool I go to is kind of sketchy: it is a stupid length (22m, I ask you), is cloudy with chemicals, and the changing room is frankly nasty. The pool is on my block though, which easily outweighs any flaws.

The brain doesn't change without repetition, attention and intention, though, so it won't be enough just to think the words. I'll have to focus on the after-effects of exercise before they've happened, to strengthen that association; the pleasant glow of used and tired muscles, and how good that can feel.

If it works at all, it will take a long time for the artificial to become automatic, especially in an adult brain, but if it does, I'll let you know.

Monday, January 21, 2013

Young Adulthood Is a Trap

As I look at my life and swing between feeling ancient (when I'm outpaced by geriatrics in the pool, or struggling to keep up with my walking stick) and between feeling the same age as I did in college (a surprising amount), I think the calorific bounty of our age lays a terrible trap for younger people; a trap that I walked right in to.

When I was in my teens I was strong, fit, lean and healthy. I also ate a frankly vast amount, and it didn't affect me much: I was growing enough and active enough that I could shovel great piles of junk food in my mouth and be little the worse for it.

College involved less food, but also less activity, and a lot more booze (lots of calories!). In my early twenties, I could still eat a bunch, drink plenty, and stay in reasonable shape with as little as 45 minutes of squash every week.

What I didn't realize, until it was too late, I was 40, and I'd had a stroke, was that I had encoded the idea that I could eat anything, do a little exercise, and be just fine, into my brain's world view. Because it seemed to be true. I made a habit of eating large amounts, and exercising only rarely.

Therein lies the trap: it is true, but only for the quarter to a fifth of your life (assuming you'll be 80-100 years old) when your brain is most malleable. The sad reality is that for the majority of your life, you will need to eat less and exercise more to stay healthy, all evidence to the contrary.

I guess it's one of the modern tests of adulthood: can you override your biology to account for our time of plenty, and thereby survive to old age? Not everyone is as lucky as I was and gets to retake a failing grade.

(Of course I'm aware that not everyone is living in a calorie glut; I hope this isn't obscene and offensive.)

Moving Goalposts

I think one of the factors contributing to my erstwhile depression was the lack of a goal. More concretely, I had accomplished all my goals, and was left with nothing immediate to reach for, and a resulting sense of futility.

When I was in the UK, I wanted to be well enough to make it on my own, and to survive back here in New York. On top of that, I wanted to host a party to celebrate not dying for a whole year. Finally I wanted to attend the Burning Convention and run a game that weekend. I achieved all three goals, and promptly plummeted.

So, I intend to set myself some goals, and track my progress towards them. I'm going to try not to ask a vast amount of myself because it's unrealistic, but here goes:

Weight - I weigh too much again. I want to be at (or under) 170lb, from this morning's 197lb. There's no time limit on this goal, so long as I'm trending in the right direction.

Exercise - Staying at the frequency I was at before is quite doable. I should be at the gym 3-4 times a week, and swimming 2-3 times a week.

Meditation - Like exercise, this is one of those stupid ones: I know meditation does me good, so I just have to hold myself accountable for doing some. Let's start with making it super easy: meditate every day this week; doesn't matter how long for.

Stretching - I haven't been doing the neat regimen of stretches that I was doing for the dumbest reason: the android app that was timing the stretches is broken. Dumb, dumb, dumb. Goal for this week: stretch after every gym session. Stretch goal: every day.

Writing - Apart from this blog, I write stuff. Except I haven't been. It's tiring, but it is possible. So: write some of Project #1 every day. For the first week, a word is enough (but more is better). I also have projects #2 and #3 which deserve dates, but not this week.

Sure, I have to face that I do have more limited resources than I used to have, that reading, writing or typing take longer, in some cases much longer, and that despite the sure and certain knowledge that all of the above are good for me, sometimes I just don't wanna. But I know that if a week goes by when I haven't met these goals, then something is wrong.

So look for a progress report next Sunday where I find out how realistic my short-term goals are.

Saturday, January 19, 2013

So Guilty

I feel hugely guilty that there's a backlog of email, commentary and Google+ private posting that I have to respond to, including kind friends and strangers whose generosity has gone quietly unobserved, those whose advice and support were personal and may have been agonizing to write, and those who offered no more than their love and empathy, which was more than I could have expected.

I read it all.

Every bit was helpful.

Writing to me no doubt was a costly endeavor in heart and soul, and I am truly grateful. It will take me some time to reply to everyone, because I don't want to be flip with any responses. Over the last couple of months I haven't had the emotional resources to reply as I think every message warrants, but that is changing.

Of course, there will be some who would pooh-pooh the idea of a reply, but they can STFU. They'll get one in the end. In the meantime, thank you!

Thursday, January 17, 2013

Twists and Turns

I just finished Matthew Mitcham's autobiography, Twists and Turns. He's the Australian diver who won the gold medal at the Beijing Olympics with the highest scoring dive in Olympic history, which remains one of the most astounding pieces of physical activity I have ever seen. He was also the only out gay man at that Olympics, which is a delight: he's so bubbly and personable, yet still an amazing athlete (you hit the water at about 60kph from the 10m platform). A great role model.

The book is well enough written, it carries his voice strongly and articulately, which more than makes up for the naif style. Where it shines, though, is in its bruising honesty. This is a young man who was best in the world at what he did, a physically difficult discipline requiring hours of training every day, and who was nevertheless dogged by low self-esteem, depression and addiction.

As someone who is coming to terms with my own depression and self-esteem problems, now exacerbated by having had a stroke, Twists and Turns was as clear a message as you can get that the causes of depression are independent of the feelings of depression, and that unless you treat depression, you are screwed.

It's a great read for a number of reasons (including the big line spacing which made it easier for me), and I would recommend it to anyone interested in elite athleticism, Olympians, depression, addiction or the benefits of living an honest life.

Tuesday, January 15, 2013

Taking a Tumble

I fell over on Sunday night.

I wasn't hurt at all, and it was probably far more exciting to see than to experience, but it served as a good reminder in the midst of improved mobility and balance. It's the first time I've fallen in New York, which is not bad (4 months!), but was inevitable, so it's good to have that out of the way.

It was late, dark, and at an intersection on Broadway in Queens. What I thought was level (or a ramp for wheelchairs or pushchairs) was in fact a 6" kerb, so over I went. Our normal impulse is to try to catch ourselves as we fall, but since I know that I don't have the strength in my right arm to do that, and it's a pretty terrible idea for an adult anyway, I now don't even try.

Instead, I let the little judo I learned 30 years ago, and the stage fall I learned 15 years ago take over, and collapse-rolled all my (substantial) potential energy into kinetic energy. While I'm sure it looked spectacular, as I said, I didn't hurt myself at all. I was lucky, though, to be falling onto a basically flat bit of sidewalk, without pillar, postbox or pole to break anything. Happily +Jared Sorensen was on hand to help me back up, and Joss was there to carry my pita bread, and all was well.

Before I moved back here, I had remembered New York sidewalks as being blissfully flat slabs of concrete, easily negotiable. I conveniently forgot that the sidewalks are far from flat, sloping from driveways, repeated parking, tree roots or just slightly sloping. They're studded with grates and basement hatches that are sometimes terrifying. But to my eye, they appear level and even until my foot has actually hit the ground. Or my ass does.

Friday, January 11, 2013

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 ridiculousEach 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.