Thursday, November 08, 2007


Brainhell’s Status

Hello has asked me to write an essay on his status. Like most of you, I suppose, I’m caught between allowing him to appear saintly and heroic (which, as those of you who have known him for quite a while will agree, we must never allow the bastard to do), and giving my true impressions of the man, with which we risk my making some truly horrifying, tasteless comments. Comments such as that Brainhell’s hiring a fellow to clear his saliva brings to my mind, every time I see it, the sketch in which Michael Palin of Monty Python, as Miles Cowperthwaite (“I don’t have a trade; but I can dance, and sing, and pick a nose as well as any man”) is hired to empty Dan Aykroyd of Saturday Night Live’s drool buckets, which he empties into the Drool Sluices, which lead to the Drool Reservoir. I’ll try not to make such comments, after I’m done pointing out that BH’s new facial hair also looks just like the beard that Frasier sported on a certain Cheers episode. I get the impression that having the beard bugs BH a little bit, but I’m not sure.
The salivating seems like one of the causes of misery. I seemed to notice BH straining at the buildup of saliva in his throat at some times. It reminded me of when I was a teen, doing hallucinogens; there would often come a clay feeling in the back of my throat because of the drugs. I didn’t know for sure whether everyone else felt the same thing (the people I asked were probably unfamiliar with the word “clammy”), but I could never wait for the feeling to go away. It seems to me that BH feels the same way.
The new fellow who is caring for BH seems a very nice guy, and seems to be doing a good job. As you probably know, BH has a board, on which are a mock keypad with letters and numbers, and many commonly used words, such as “which,” “where,” “what,” the names of his family members, and so forth. With the board, he has been able to communicate fairly well, at about half the speed at which one usually talks. However, on my last visit, I did find that BH’s pointing seems to have become less exact. I found myself unable to effectively hold the board, in such a way as to position it properly for his pointing. His caregiver had to do so for me, most often.
BH is being fed with a drip, which of course is the most alarming thing to see. I suppose they can keep a guy going indefinitely with such measures, but to a layman with no medical knowledge, the drip feeding, combined with the fact that BH has become extremely thin, seems to bode ominously. This word brings to mind another piece of psychological sleight-of-brain with which you all may be familiar: that, dear Lord, we can’t use or even think phrases like “bode ominously,” lest it magically call the worst into being, like a demon in a horror film. I just read a newspaper article discussing this; someone had discussed some awful possibility, and the other person said, “don’t even say that.” The columnist mocked them gently, because the phrase “don’t even say that” seemed to imply that mentioning the thing had the power to bring it into being. However, as you’re also aware, in the case of bodily wellness, the state of mind is very powerful. This doesn’t mean that our prayers, for which I think BH hasn’t lacked, will cause his ALS to reverse entirely, absent some almost miraculous new treatment, for which we hope that BH hangs on. It means, though, that we feel we want to be mindful of suggesting positive things such as love and wellbeing, with our words, tone of voice, and even our facial expressions, without plastering a fake smile on like Pollyanna. How do we do that? How do we think and act positively, without being Pollyanna? It’s one of those questions, just like, “how do I act assertively, without being abusive or aggressive?” The question answers itself: you act assertively, without being abusive. You act positively, without being Pollyanna. You know what it looks like. Or if you’ve never seen it modeled, take your best guess as to how a real person would look, walking the narrow path. For me, this has meant that I haven’t sighed in BH’s presence. Big deal—I often sigh, without it needing to mean anything more serious than, “wow, what a busy day it’s been!” But I don’t sigh in front of BH.
I have to be told that the drip is a PEG drip, not an IV drip, which I initially took it for. A PEG drip, so BH’s wife tells me, delivers the food formula directly to the stomach. All my life, I’ve enjoyed playing with jargon, dialects, and languages of every kind. Yet I’ve never felt comfortable becoming expert in medical terms, when a friend or loved one has been in the hospital. I don’t know why I feel that way. There’s something about the idea of laymen, friends and loved ones of someone in trouble, being called upon to learn, become familiar with, and airily and effortlessly reel off medical jargon, that just makes me really angry. I don’t quite understand why. It outrages me somehow. Maybe it’s the idea that, like the doctors and nurses, we’ll also be called upon to become blasé about how bad a break it all is, if we don’t look out, and to cease caring or feeling empathy. That we’ll forget that our role in this is not to make room for disease, or to welcome it breezily into our lives, to make it comfortable, to organize our lives around it, but to banish it, to sneer at it, to ridicule it bitterly, mercilessly, to hate it. That doesn’t seem enlightened to me, when I read it. An enlightened person would say, “This is in our lives. What is it here to teach us?” But that reminds me of a button I saw someone wearing once, which said: “Please God—Not another Learning Experience.” When my cousin’s daughter had Cystic Fibrosis, from which she eventually died, my cousin mentioned an anecdote: he was in a traffic jam, and becoming angry at the traffic. After he had really become steamed, his daughter finally said to him: “This is your CF, Dad!” A chronic annoyance. I suppose we shouldn’t hate the disease, or the inconvenience or suffering we see; but should we love it? That sounds as ridiculous as hating it. Do we always anthropomorphize it? Anthropomorphizing the disease, making it into a conscious enemy; we do this because we’re incapable of understanding anything like this unless we relate it to something else in a metaphor. This is why there are always metaphors and symbols in literature, or why we never see Jesus without his parables. But what is the right way to think of the disease, if not to anthropomorphize it? Can we rally ourselves, without an enemy? Do we need to feel angry at ALS, as if it will somehow feel ashamed and back off? Will BH summon his will against it, if he doesn’t? I feel my superstitions coming into play—I’m afraid to feel too much empathy, lest that somehow invite BH’s fate to come to me, as Christopher Reeve became wheelchair-bound after taking an interest in the wheelchair-bound (I know BH has addressed this choice of words, “wheelchair-bound”). It would chill me to the bone to consider ever living with something like this, because I know that my response would be, on far too many days: “Jesus Christ Almighty, is this ever so Fucking annoying.” I have no idea what BH really thinks about it all, blog or no blog, and I don’t really know how he rises to the challenge. I pray for his strength.
BH’s mind, of course, is as active and sharp as it has always been. It seemed to me that BH was more sensitive to heat. The temperature was only around 73 degrees, but he was apparently bothered by it. The impression it conveys is that his brain, without being able to express itself in gestures or speech, is overheating, much as your car overheats more readily when it’s idling in traffic, than when it’s allowed to move.
BH’s emotional state seems good. He has, of course, good people around him, like his wife and the two little angels. This has got to ease things for him. I have only watched friends and family members with acute or chronic illnesses, so I don’t know what it’s like to walk the path. But I think that the most important thing when facing something like this is not to have to fight your own bullshit at the same time. By “bullshit,” I mean the lies that people tell themselves to skate past and paper over the times when they’ve been weak, when they haven’t been there for other people, when they’ve abused people, when they just haven’t been authentic with people. If someone goes into this labyrinth with a bad conscience from memories of lying to themselves and everyone else, then it really must be hell. If someone doesn’t have a lifetime of such memories, then they can at least face it calmly and clearly. Here’s to you, BH.
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