I am not bothered by the prospect of death at all; the fear of it doesn't happen to me, let alone disturb me as it did the medieval Catholic poets. I've seen death close up, my own and others, and I know that I'm doing what I can to defer my demise as long as possible. What does bother me, is the tremor and fear of it.
My right hand and arm is the most obvious place that the tremor occurs. I have what is called an intention tremor, which, if you look at the linked Wikipedia page, is "very difficult" to treat. So there's the fear that it will never go away, and I will always write terribly with a pen, always spill drinks with my right hand, and so on. I'm afraid that the brain damage's effects will be permanently with me.
The fear is more extensive though because the tremor--or at least something like it--is more extensive. To start with, my right leg shakes. This is similar to the sort of shaking that happens with muscle fatigue, and usually goes away when I press down on my right heel. My concern, though, is that the tremor extends to my leg as well, but that genuine muscle fatigue is masking it.
This isn't as crazy as it sounds, when you consider what is perhaps the scariest trembling that I have, which is in my diaphragm. My breath shudders as I inhale, as though I am taking a series of gasping breaths, instead of one smooth inhalation. I notice it when I'm meditating (it's a distraction!) but it's obvious to observers when I inhale involuntarily after sighing.
The fear that my breath will always be juddering is horrible, and I have to try to ignore it. It was terrifying to realize in November 2011 how damaged my voice was, and it's scary now to contemplate the possibility that I will never attain the vocal facility that I once had.
The most effective treatment seems to be acupuncture, so far. Nothing else has worked. So thanks to the donors who've made more needles possible! I'll talk about the needles soon, I promise.
My right hand and arm is the most obvious place that the tremor occurs. I have what is called an intention tremor, which, if you look at the linked Wikipedia page, is "very difficult" to treat. So there's the fear that it will never go away, and I will always write terribly with a pen, always spill drinks with my right hand, and so on. I'm afraid that the brain damage's effects will be permanently with me.
The fear is more extensive though because the tremor--or at least something like it--is more extensive. To start with, my right leg shakes. This is similar to the sort of shaking that happens with muscle fatigue, and usually goes away when I press down on my right heel. My concern, though, is that the tremor extends to my leg as well, but that genuine muscle fatigue is masking it.
This isn't as crazy as it sounds, when you consider what is perhaps the scariest trembling that I have, which is in my diaphragm. My breath shudders as I inhale, as though I am taking a series of gasping breaths, instead of one smooth inhalation. I notice it when I'm meditating (it's a distraction!) but it's obvious to observers when I inhale involuntarily after sighing.
The fear that my breath will always be juddering is horrible, and I have to try to ignore it. It was terrifying to realize in November 2011 how damaged my voice was, and it's scary now to contemplate the possibility that I will never attain the vocal facility that I once had.
The most effective treatment seems to be acupuncture, so far. Nothing else has worked. So thanks to the donors who've made more needles possible! I'll talk about the needles soon, I promise.
Well, you're a braver man than I am. There's never been one point when I was comfortable with the idea of dying - in fact, when I'm sick and miserable I always tell myself, "Well, this is loads better than being dead."
ReplyDeleteSomeone said once that life is interesting and death is peaceful - it's only the transition that's troublesome. Perhaps so, but I am alive now, I enjoy perceiving things, and I see that there's a point in future where I shan't be perceiving things, and that's difficult to take.
The intention tremor is an "interesting"(*) symptom. I note that cannabis has been helpful in treating it - a drug which might have some positive effects on your mood as well. The "tremor" (it's pretty slow for a tremor) seems to be caused by oversteer - your attempts to correct your hands position end up creating periodic motions in your hands.
I have seen some amazing recoveries from supposedly unrecoverable diseases.
The one that's most relevant to you is a friend of mine who was born with a condition where motor muscles continually fire at random - a "universal tremor" to coin a phrase (I don't remember the real term, I moved and have lost track of him). Usually people with this never make it out of a wheelchair. His grandfather, a doctor, spent thousands of hours working with him, helping him learn to to use his muscles. He worked out a crazy but very effective solution where his muscle pairs are constantly both in tension, even when he moves. As an adult, he's built like a tank, and makes an excellent living as a high-end mechanic for luxury cars. Once he told us this story, we got to touch his muscles - as predicted, each one is taut all the time. Wild!
And you can't see any tremor on him at all. He moves like a cat - or a powerful machine.
Just a data point....
(* - You never want your doctor to say how "interesting" some aspect of your health is...)
It should be "hands' position" - bah. Crave an edit function!
ReplyDeleteI think your friend has what is called an "essential tremor" which is a doctor way of saying "a tremor that you're stuck with." It's awesome to hear that he found a way to manage it. I have certainly noticed that I can move in a way that I think of as prowling, or very deliberately, or using a particular quality of motion, and that causes less of a tremor.
ReplyDeleteOf course, I wouldn't dream of doing anything that smacked of moral turpitude, like taking federally banned narcotics, but I do recall one of the Mt. Sinai medicos warning against cannabis. I'm buggered if I can recall why though.