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. 

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. 

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.

Friday, October 4, 2013

Reading For Pleasure

I learned to read when I was 2: my Mom was pregnant with my younger brother and bed-bound for much of the pregnancy. By the time I was 6, I could read a story-book upside-done, to the "little" kids, so they could still see the pictures. I read The Lord of the Rings when I was 10, after being told i was too young; I brought my Dad's volumes to school, since I couldn't take a copy out of the library. After that, I was allowed to read anything I wanted. 

In the same library, before I was 13, I was the first person to read the multiple volumes of the "Tales of 1,001 Arabian Nights" that had been gathering dust for about 80 years. I know, because I had to cut some of the pages (after I learned why some of the pages needed cutting, and why it was OK). 

By the time I was 17, I would re-read The Lord of the Rings in a weekend, though not sleeping much on the Friday and Saturday nights. I didn't know it then, but the escape that book offered was a coping mechanism of sorts. On a long train journey from Bangkok, I read War and Peace; I had to spend a few hours finishing it (and I skipped the second epilogue, which is too obvious if you read the book in one sitting). 

As an adult, I would read light fiction in an afternoon, anything more complex in no more than a week. Interrupting me while engrossed in a book was a good way to shorten my temper, if not make me lose it altogether. Books were a pleasure to be savor end and relished. I was almost never without one.

I've read Dickens, Chaucer and Milton, but not Joyce or Spencer; Tolstoy, Chekov, Solzhenitsyn and Dostoevsky, but not all of their great works; Rousseau, Diderot, and de Sade. I have read reams and reams of 'junk' some of it good, some of it utter crap, but I have stopped reading very few books in my lifetime. I own thousands of books, and have given away or left behind thousands more.

So, I think it is fair to say that reading has been a significant part of my life. 

That all changed when I had the strokes. I've written about and illustrated the visual deficits before, but never really detailed why they make reading so much harder. The diplopia doesn't make a lot of difference, since I'm occluding one eye. However, with One-and-a-half Syndrome it means that now I move my whole head more than just my eyes.

The biggest challenge comes from oscillopsia. Because my eyeballs move up and down rapidly, it has become very hard to read a longer line of text unaided. Larger text (available from libraries or eReaders) is less useful than greater leading (not usually an option), although it is a bit better. Small, dense print is effectively illegible.

Unfortunately, reading is now much harder work than it used to be.  Before, I might comfortably read a quarter of a book at night, now I'm lucky to read a chapter before becoming too tired. Audiobooks offer a solution for new books, but my pleasure has been in the reading itself, and hearing someone else's voice interpret text is no fun.

With either an eReader or an audiobook, there is also the problem of the thousands of books I already own, and can't afford to replace in other formats. Reading one of the books I've kept allows me to experience the world in a particular way, to enjoy a certain tasty idea or be thrilled by crunchy repulsion again, or just to find something new there that I hadn't perceived before.

The difficulty I have with reading is all about the physicality of the process. It will improve with time and practice. For the moment, though, it pretty much blows, and I've seen no way to restore what was lost. It's one of the areas where my stubborn insistence on recovery over compensation costs me most. TV isn't as good. 

Thursday, October 3, 2013

Recovery Blues

About two weeks ago, I swam 4km, without pause, in just under a couple of hours. I was pleased with myself. Then a conflation of circumstance provided a good excuse not to go to the pool or gym for about two weeks, setting me on a vicious circle that I will try to illuminate. Our demons have less power over us in the light of day.

There seems to be no escaping the fact that recovery is so slow most of the time, that it feels as though I'm making no progress. Nearly two years after the strokes, I feel, if anything, in a worse place physically than a year ago. This is objectively false. A year ago, I could not swim for two solid hours. That doesn't alter how I feel about it though: my brain is pretty stupid and impatient. Unless I actively work to contradict this feeling, it reigns. 

Then there the deficits that are most debilitating, whose changes are so slow that I have to wonder whether I'm improving or delusional. Physical strength is relatively easy, wobbling eyeballs and shaking arms are hard. I have to sustain a high level of trust that these things are improving, and will continue to do so, although there's no way to verify that there is any change. 

So, I'm already facing a struggle up a slow hill. Add in the unfortunate reality that it takes about three days of rest before I have deteriorated enough physically to notice a reduction in function, and the struggle is Sisyhpean. The memory of how easy things used to be, the casual eptitude of the people around me is Tantalizing. To stretch this analogy, whenever I feel like I have accomplished something, the eagles of depression come and feast on the liver of my optimism. Prometheus-like, it regrows, but not overnight. 

When I take a longer rest from exercise, as little as a few days, I don't want to start again because my progress is so slow, and so easily reversible that it feels pointless. Worse, I know that starting again means never stopping. Not, at least for more years than I can effectively compass. There is no end state. I can tie my activity to other goals, but recovery itself is too elusive to have meaningful expectations. 

The only refuge, it seems, is to be bloody, bold and resolute. Rationally, I know that I am better now than I was a year ago, and so I must let Reason dominate while Emotion endures. Boo-hoo.