Friday, October 11, 2013

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 tremo
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.