Hard to believe, but it's six months today since I began* the morning withBret, I would you mind calling an ambulance, I think I'm having a stroke. To his credit and, I think everyone's relief, he called the ambulance first before exchanging his bath towel for clothes. It's a strange thing to be that indebted to someone, but not a bad thing.
Since then, it's been a series of shocks and surprises, occasional dark clouds of depression, frequent silver linings, great warmth from friends, family and many acquaintances, but largely cold indifference from strangers and the universe at large. The uphill path of recovery, a slow road of repetitive result-less futility is punctuated with shining moments of success, and with each little victory I drag myself a little closer to rehabilitation.
It has made, and continues to make, a difference knowing that I have supporters on the way. From the friends who came by my hospital room at Mt. Sinai, or trekked out to the Median Road rehab unit, conveniently located in what cabbies called "Murder Row," to family who have moved mountains to see that I got treatment and rehab, even to those acquaintances or strangers who are just interested in reading about a stroke from my perspective. Just knowing you are all out there, even if you're bored by what I'm writing and too polite (or guilty) to get my drivel out of your stream, goes part of the way to getting me moving each day.
Ultimately, though, my recovery is my job; nobody else can make it happen but me. No known treatment will get my brain to handle the jobs once done by the few cc of neural matter I obliterated when I had my strokes: I have to make my brain do that. No doctor can give me a pill to make it all better, or cut the wrongness away: I have to make it better, and either accept the wrong, or work to make it right. No physiotherapist can improve my walking, or get my shoulder muscles to work: I have to do those exercises, I have to pay attention, and I have to repeat them it seems endlessly.
Poor me.
Well, bollocks to that. "Poor" nothing. That's life, and that's living for you.
I'm learning about my body, my brain, my mind all the time, and I'm growing. Until recently I had no real idea what it is like to have disabilities, and now I do, I don't like it, I'm working hard to get rid of my deficits, but some of them may be permanent, and I can never look at the able-bodied world in the same way again (you wouldn't believe some of the websites out there).
All of which is to say, I'm not done, yet. Before I had my strokes, I had noted from the movie Milk that Harvey Milk was forty before he moved to San Francisco. Everything he did to change the world didn't start until he was forty. I was optimistic that there was plenty of life still to left to live when I turned forty, and when I then had a bevy of strokes less than five months later, I made the choice to remain optimistic. I mean, what's the worst that could happen? Short of death, it already happened, and if I die, it's someone else's problem.
Six months on, I don't consciously remember what it was like to walk, read, write or type before I had the strokes, but the sense that my right side is not right is still strong, and I know that persistent use will bring function back. It's hard to not do things with my left hand, to stop myself compensating, to force my brain to rewire the right hand as it once was, but unless I do that, it will never recover. It's frustrating to tie my shoelaces slower, but it's worth it to me to take longer and make my right hand do what it used to, so that eventually it will be fast again.
Some good news: since Monday, I've had a sensation in my right leg akin to having rubbed Bengay (Deep Heat) into my calf and glute. This has come with an increase in control of the 10 degrees of motion as I extend my leg and lock my knee, if I concentrate and isolate it on a leg press. It has meant I'm a little bit more stable, and a little bit more able. This at the exact moment where many will tell a stroke sufferer that effective rehab is done, or that further gains are unlikely. Screw that.
If I wasn't wired for determination before this experience, I sure as hell will be when I'm done.
*OK, I'd been up for a couple of hours in a writing hangout with someone else, but that feels like before not the beginning.
Since then, it's been a series of shocks and surprises, occasional dark clouds of depression, frequent silver linings, great warmth from friends, family and many acquaintances, but largely cold indifference from strangers and the universe at large. The uphill path of recovery, a slow road of repetitive result-less futility is punctuated with shining moments of success, and with each little victory I drag myself a little closer to rehabilitation.
It has made, and continues to make, a difference knowing that I have supporters on the way. From the friends who came by my hospital room at Mt. Sinai, or trekked out to the Median Road rehab unit, conveniently located in what cabbies called "Murder Row," to family who have moved mountains to see that I got treatment and rehab, even to those acquaintances or strangers who are just interested in reading about a stroke from my perspective. Just knowing you are all out there, even if you're bored by what I'm writing and too polite (or guilty) to get my drivel out of your stream, goes part of the way to getting me moving each day.
Ultimately, though, my recovery is my job; nobody else can make it happen but me. No known treatment will get my brain to handle the jobs once done by the few cc of neural matter I obliterated when I had my strokes: I have to make my brain do that. No doctor can give me a pill to make it all better, or cut the wrongness away: I have to make it better, and either accept the wrong, or work to make it right. No physiotherapist can improve my walking, or get my shoulder muscles to work: I have to do those exercises, I have to pay attention, and I have to repeat them it seems endlessly.
Poor me.
Well, bollocks to that. "Poor" nothing. That's life, and that's living for you.
I'm learning about my body, my brain, my mind all the time, and I'm growing. Until recently I had no real idea what it is like to have disabilities, and now I do, I don't like it, I'm working hard to get rid of my deficits, but some of them may be permanent, and I can never look at the able-bodied world in the same way again (you wouldn't believe some of the websites out there).
All of which is to say, I'm not done, yet. Before I had my strokes, I had noted from the movie Milk that Harvey Milk was forty before he moved to San Francisco. Everything he did to change the world didn't start until he was forty. I was optimistic that there was plenty of life still to left to live when I turned forty, and when I then had a bevy of strokes less than five months later, I made the choice to remain optimistic. I mean, what's the worst that could happen? Short of death, it already happened, and if I die, it's someone else's problem.
Six months on, I don't consciously remember what it was like to walk, read, write or type before I had the strokes, but the sense that my right side is not right is still strong, and I know that persistent use will bring function back. It's hard to not do things with my left hand, to stop myself compensating, to force my brain to rewire the right hand as it once was, but unless I do that, it will never recover. It's frustrating to tie my shoelaces slower, but it's worth it to me to take longer and make my right hand do what it used to, so that eventually it will be fast again.
Some good news: since Monday, I've had a sensation in my right leg akin to having rubbed Bengay (Deep Heat) into my calf and glute. This has come with an increase in control of the 10 degrees of motion as I extend my leg and lock my knee, if I concentrate and isolate it on a leg press. It has meant I'm a little bit more stable, and a little bit more able. This at the exact moment where many will tell a stroke sufferer that effective rehab is done, or that further gains are unlikely. Screw that.
If I wasn't wired for determination before this experience, I sure as hell will be when I'm done.
*OK, I'd been up for a couple of hours in a writing hangout with someone else, but that feels like before not the beginning.
No comments:
Post a Comment
Please say what you're thinking, be excellent to each other, assume the best in other people, and just don't be a dick!