Maybe That Got Better?

Sometimes, my leg gives way. I don't mean those times when my leg is a bit tired from too much exercise; that is expected, and quite easy to deal with (just don't think it will hold when it won't). I mean that every now and then, my right leg simply does not respond.

Time was when that would mean that I would promptly fall over, but that is now an exceptionally rare event, fortunately. Nowadays, I'm much more likely to be able to catch myself or to be positioned near something that can take my weight. It is still a rather negative event, and one that I would like to avoid, if possible, and understand. Naturally, I think I have an idea what is going on.

Periodically, I think my brain tries to route the command to my quadricep the way it did for 40 years. That chunk of brain is long since dead, of course, so the instruction fails and my leg buckles. This would seem like a pretty daft thing to do, but I don't think it is. One of the scenarios that causes things to fail in the brain is swelling. (I'm sure there are lots of others, too.) If all goes well, swelling goes down, and normal function can resume, as soon as the brain figures out that it can use the hitherto blocked pathway again. If it doesn't go well, you die.

So an algorithm that periodically checks an old, non-working pathway makes sense, because there may be no other way for the brain to establish that a path is working again. This would be much more useful to me if I didn't periodically buckle, but such is life!

Do No Harm

I just finished reading "Do No Harm,  Stories of Life, Death and Neurosurgery " by Henry Marsh. Autobiographical and enthralling. I read it in 2 days which used to be trivial but if you know me now, that's a testament to how good the book is.

As well as having very interesting subject matter, being candid, crotchety and compassionate in equal measure, it's well written, to add to the book's appeal.

If you're at all interested in the brain, neurosurgery or death, I don't think I can recommend this enough. Happily, I got this from my local library, and I expect you can too.

Several times he talks about "catastrophic strokes" and "wrecking" people in surgery, and I couldn't help but face the reality that I am profoundly disabled now, and quite likely to stay that way. It doesn't change my perspective, but it is quite stark.

Four Years On

Four years ago, exactly, I had a bunch of strokes, and I have been recovering ever since. I'm still at it, partly because it takes so damn long to recover, but mostly because I have nothing better to do. So, it's time for a status report, both physical and mental, and some cogitations.

Walking is still a challenge for me; I use a walking stick (cane), and can't walk very far. That's mostly because my balance is compromised, but my right side is still weaker, which is disappointing. My balance has certainly improved over the four years, I can turn corners a lot more easily than before, but my equilibrium is still very shaky. Swaying is my default, now. I still look drunk, but I care even less.

On my right side, as I mentioned, I'm still weaker by a long shot, and I have an intention tremor. This means that, when I intend to do something with it, my hand shakes. That makes writing with my right hand a challenge in particular (see below), puts typing back to hunt and peck (but see below), and means that moving any kind of fluid with that hand involved is a risky proposition: I prefer not to spill my beer. As well as the tremor, my arm and leg sometimes jerk at random and are more sensitive. The combination is spectacular.

Visually, there has been little change since this post, although my left eye (the most affected one) now moves a hair past the midline, which is progress. It's hard to see any movement on that front, because the changes are so small, but the difference in four years is undeniable. I still have diagonal double vision, which vies for most irksome visual defect with the oscillopsia, but have an exciting and dashing new strategy for my eyes. Until recently, I've been wearing a prism that corrected the vertical component of my diplopia. Now, however, I'm patching one eye. This new piratical approach deserves its own post, but I'll say this: the patch changes side.

When I first had strokes, my face was paralysed completely from the middle. It was like having a free botox treatment, but only on one side. Since then, a lot of motion has returned: I can smile with both sides of my mouth, but my face is very lopsided. My left eyelids don't close yet. In general, it seems as though activity returns from the middle, from my nose to my ear. I'm a bit concerned that my lips and mouth have not apparently changed, and I think that may be my fault: I haven't exercised them enough. So it goes.

The biggest change for me has undoubtably been moving back to the UK. There is so much I could say about moving back here from New York, but I'll just say that my life is physically better here, and leave it there for now.

Earlier, I mentioned that typing is hard: it is, with a regular keyboard. My typing speed is greatly reduced on a QWERTY keyboard, mostly because I can't tell which key my right hand is on, and it hits a random key often enough that I find the whole exercise deeply frustrating. Since it has been four years without perceptible change, I've switched to a one-handed chording keyboard, called the Twiddler. The whole of this post, including punctuation, was typed with only my left hand. Learning has been awkward, but it's more the slowness of learning to touch-type from scratch, and that is much easier to deal with. It's early days yet, but I like the device so far.

The other casualty of the tremor has been my ability to write with my dominant right hand. I'm luckier than some, I still know how to form letters, but my writing is horrible: inconsistent, jerky and slow. Recently I was reminded that Admiral Lord Nelson learned to write with his left hand after losing his right arm. Notwithstanding his brilliance, if he could learn how to do it, so can I.

So there you have it: in some ways nothing has changed in four years, but of course, a huge amount has improved, and life is really not bad at all.

Fifteen Years

It has been fifteen years to the day since I moved to New York. In 56 days I'm going back to England for good.

I thought I would be moving here forever. New York has been my home for a decade and a half: I was a few blocks away from the WTC  on 9/11, I missed the great blackout by accident, I was here for Sandy. Many of my good friends live here. I have lived, lived and lost in this great city.

Then I had some strokes here. I was hospitalized here, and managed not to die here.

Now, I can't afford to live here any more. Every visit to every doctor is another unexpected bill and this is an expensive city.

I could survive here, and I have, but the city is packed with all the things I can no longer do, or can't do without inevitably comparing the many joys I had of this place with the degraded experience I have now. Increasingly, I'm relying on my memories of the city, not on new ones.

This country is bonkers and gets increasingly insane with every day. It is so easy to ignore just how dangerous the prevailing mindsets are when you are affluent, white, male, able, and living in a big city, but not so easy when you can't work and are no longer comfortable.

I have no regrets that I lived here, but I have no tolerable future in this city. Such is life. One great decade and a few years that weren't so great are not too bad at all, by my reckoning.

I Have No Idea Who You Are

My eyesight has not improved perceptibly; the current strategy of bringing both fields of view into closer vertical alignment is better than nothing, but not as good as obscuring one eye, and a lot bigger pain in the neck. I'm going to change, but not until I'm back in the UK for good… I have too much to do before then.

One of the ways in which my vision sucks is the effective lag I have in forming a picture and passing it on for recognition. My eyeballs are fine. The muscles controlling my eyeballs are not. So the visual data I send to my brain is in constant motion. It's a lot like having a shaky cam on each eye and trying to make sense out of the picture when they're combined with built-in displacement and shaking inconsistently.

I can do it; I form an image. It's slow though: it takes me seconds, not milliseconds. In practice, that means I have no idea who I'm passing on the street until they are past me, unless there is some other input. To give you an idea how bad it can be, I didn't recognize my own father on the street until he spoke.

It's easier when people speak: there's nothing wrong with my hearing, nor with the recognition itself, just the basis for recognition. Context can make it easier, too: if I'm expecting to see a certain person in a given place, then I can more quickly fill in the visual gaps to confirm that I'm actually seeing that person not someone roughly similar.

Happily for everyone else, there is no need to cross the street to avoid me: I won't recognize you. Sadly, the pleasure of running into someone and chatting is lost to me: I can't see who you are, let alone pick up the subtle cues that tell me if you want to chat.

On balance, I think this has made me more gregarious. I'll talk to pretty much anyone, but it's probably because I have no idea who they are.

Don't Kid Yourself, Push Yourself

I just got back from the pool again, but instead of swimming for two hours, I only swam one. 2,100m in an hour, breast stroke, isn't too shabby for a brain damaged old fart like me, but I would rather have been swimming lengths for twice as long without pause.

Alas, it is a sunny day and right in the midst of resolution season, so at noon the pool filled up. I've mentioned before that I become extremely intolerant in the pool, and that does not seem to be something that is changing. I'm not trying to change it, either. I spent much of the hour I did manage to swim dodging the pair having a leisurely chat while ambling up and down the pool, mostly keeping out of the way of the guy who swam, turned and repeated (me).

In the middle of this, ungenerous thoughts filled my mind, often along the lines of "get out of my damn way," with a sprinkling of "your screw kick is horrible" for good measure. One thought is applicable to anyone gripped by resolution fervor but feeling the drudgery of slow progress, or the gradual sapping of their will, and it was exemplified by the slow pair in the pool: "stop kidding yourself!"

The duo were maintaining a steady and unfettered chat throughout their 'exercise.' They were not short of breath (they were nattering for England), and if they were warm at all, it was because the pool is too hot. They might as well have been having a cup of coffee instead. They certainly don't deserve any plaudits for working.

It's an easy trap to fall into: "it used to be difficult, but is easy now, it must be enough". Complacency is a surefire way to stop making any progress, though. If you have enough breath to maintain a conversation while swimming you are either phenomenally fit or you are deluded and doing it wrong.

As we get fitter, what was once hard becomes easier. Great! That means we have to work harder to get the same effect. It should never be trivial, it will always be hard work. Deal.

'Bad Luck' Math Fail

Most cancers are just bad luck, scream the headlines today, in typically irresponsible and ignorant fashion. The emphasis, of course, is on the entropic reality of genetics, and the implication is that you shouldn't care about the known bad things, because you might just be lucky (or unlucky) anyway.

This is bunk. It's stupid bunk, too, that preys on the human brain's aptitude for seeing patterns and reducing entropy.

We are all going to die*. We have very little control over what's going to kill us**. What we can control, if we survive long enough, is the extent to which life will suck as we get older. That suck includes, but is not limited to, cancers whose risks can be reduced, forms of diabetes, joint pain, difficulty walking, difficulty breathing and the sundry joys of an aging body.

Bad things happen. Bad things happen to good and bad people alike. Bad things happen anyway, no matter what. There is no way to prevent many bad things.

What you can do is reduce the risks of the bad things that you can prevent, and increase the odds of surviving the bad things you can't prevent. That's tricky, of course, because your mind's got to recognize the long term benefit to being healthier, and override the brain's desire for the shorter term benefit of spending less energy now.

You can choose not to get healthier, not to lose weight, not to stop smoking or whatever it is you're not doing, but for your own sake, and the sake of those around you, make a conscious choice. If you want to choose a miserable senescence or a terrible death, go for it. Don't kid yourself, however, that you're not choosing death when you are just taking the easy route.

At this time of year, resolutions abound. In a few weeks, resolve falters, and in a month or so, old habits prevail. Challenge yourself to choose to live longer, less painfully and more consciously, and when that resolve falters, remember why you made that resolution in the first place, and keep going.

* Probably.
** Excluding suicides.