Three Years Not Dead

My first strokes were three years ago, today; it's time for an update. I'm not sure whether to lead with good or bad news, but here goes:

First, I'm not dead. I think that counts as good news. 

Then there's all the stuff that is still a problem: I have double vision, oscillopsia, weakness and a tremor on my right side, and a facial palsy. I may be forgetting something obvious to others, but regardless, that's some of the not-unexpected not-good news. 

A lot has improved. I walk better; I have to go outside with my stick, but I still walk better. I'm fitter: two and a half years ago I was hard pressed to swim 25m without a break. Yesterday I swam just under 3km without stopping. That's good.

Some things, it's hard to say either way. I've been very depressed at times over the last few years. Sometimes because I have been flat broke, more often because recovery is slow, unpredictable,and hard to measure without the right equipment (see: broke). Right now, though, I'm not depressed. I'm swimming and going to the gym, I'm getting out a bit more, and even going on some dates. 

Mostly, things are relatively good, for now.

I've been thinking recently about 3 years ago, and how bad I must have been. Bad enough that it's taken 3 years for some of the people who saw me right after the strokes to admit how terrible I looked. Bad enough that I signed a surgical release on the first day, because they were mooting surgery to stop the hemorrhage, and bad enough that I spent eight days in intensive care. I have bad enough brain damage that three years on, recovering from brain damage is my principal occupation. 

Oddly, I suppose, I don't think of the brain damage, and associated problems as health issues. Hypertension, which probably caused the strokes, is a health issue, and one I'm being medicated for, but the neurological damage just doesn't seem to fit in that box. If you set the brain aside, I'm healthier than I've been for ages. 

I'm used to being the guy with a stick. Used to having wretched balance, to avoiding crowds when I can, and to absenting myself when I must. The exhaustion that comes is not, I think, peculiar to stroke, but is instead a feature of the learning brain, and thus it is inevitable when your brain has been damaged and recovers. 

I care less about mores. Again, this is not an aspect of my particular damage, but rather behavioral: I don't talk as much as I want, so I talk more to strangers, I'm nosier, and I share my dubious wisdom liberally. Writing is hard, so I run my mouth, which is easier. Disabilities are a great cover for this new habit: strangers can safely assume that I'm funny in the head, and who would hit the crippled guy anyway?

I can't say that it's been a good year, but it has been about as good as it could have been. 

Two Years, Not Dead

It has been two years to the day since my first stroke. It should come as no surprise that my life has changed substantially since then. I spent a week or so in intensive care, over a month in an acute care ward, about six weeks in in-patient rehab (in the UK) and I've been recovering since then. Sometimes, I've had help, but much of the time, I've been on my own. If you can climb stairs and make a cup of tea you're alright, right?

Perhaps surprisingly to those who knew the younger me, I'm not at all bitter. Living with brain damage that left my cognition intact has made me a better Buddhist, a better person maybe. Life is harder than it was, but for all the frustration and inability, more joyful. I have had to re-evaluate many things, and make difficult choices about my priorities. 

One of the hard choices is between compensation and recovery: how much should I adapt and adapt my environment to make life easier, and how much should I persevere, trusting that I am slowly, imperceptibly improving. I have heavily favored recovery, but I am doubting that choice a bit. For example, I could have learned to write with my left hand by now, but have been adamant that the tremor on my right side will abate, and I will write 'normally' again. All things change, though, and as I enter the third year of my new, disabled life, I'm thinking about change.

To the details! As a reminder of the deficits: left side facial palsy, right side weakness, right side tremor, balance and vision. Here goes (with a bonus at the end):

Left side facial palsy

This is slowly lifting, although the corner of my mouth is stubborn. While my face is evidently afflicted, it's not as droopy as it was. I still can't close my left eye fully, but it's not a problem sleeping, nor keeping it lubricated. The latter is worst at a movie, because I have to roll the eye consciously to keep it moist. Acupuncture has been particularly good for stimulating my face.

Right side weakness 

My right side is still weaker than my left, and it's most obvious in the smaller, stabilizing muscles. They're hard to get at, and the pace at which they recover is governed by the neurology of the brain, not so much the effort at the gym. Gym time is sine qua non for recovery, but if it was all I needed, I would be fine by now. One of the signs that muscular control is returning is that my right foot thumps less. I don't quite have feline grace and poise, but it is arguable that I never did. 

Right side tremor 

I still have it. I don't know how to eliminate it. I'm trying to avoid things that reinforce it, but it is pernicious and persistent. It is also surprisingly debilitating and quite frustrating. The tremor is one of the things that really challenges my sense of being a whole person. 

Balance

This still sucks, but it is improving. I look a bit less squiffy walking down the street. It is, as I may have mentioned, hard to tell whether my equilibrium has improved at all, or whether my improving muscular control means that I manage the wobble better. I experience a fairly constant swaying backwards and forwards, which does lead to a few hairy moments now and then. This is another thing that I don't really know how to fix. I need to get my brain to acknowledge that it's not working correctly, first, and I think that's tricky for an adult brain. 

Vision

Well, this is fairly shitty. I tend to avoid thinking about how bad my eyesight has become because in familiar contexts, I'm smart enough for my vision (in the brain) to compensate. The double vision, which I think is in the oculo-motor muscles, remains, and although medical experts say that my vision won't change at all in the future, I think they are muscles. They can be worked. The work will lead to new neural connections, and eventually I will be able to see a single binocular image. It is possible that the tiny improvement I see is a delusion, but it is one I'm clinging to. 

Cognition (bonus!)

I'm coming to think this has been affected after all. Not in any huge way; I'm not a drooling imbecile, but in small ways. For one, I have forgotten things in the last two years in a new way. Then, there is the juvenile glee. Perhaps it is because I have let go of some things, perhaps it is brain damage, but many things fill me with excited happiness in a bigger way, and in a rather child-like way. As cognitive effects go, this one is pretty good. It does mean that I troll a bit more often, and more of my jokes are really only funny to me, but being laughed at for laughing with is not the end of the world.

So, two years on, that's where I'm at. There's been undeniable progress in the last year, but there is still a long road for me to travel, and the going is slow. I probably forgot stuff, so if there's anything you are curious about, ask away.

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)!