Hovering [UPDATED AGAIN]
It would be absurd to say J is “hovering between life and death.” He’s still very much on the side of life.
But it’s as if he’s pondering whether it’s worth the effort to stay here. If he doesn’t have the strength or the desire to make the effort, he will slide.
I’m waiting to see what he decides. Waiting to follow his lead. Like dancing.
UPDATE: More and more I think he’s not coming out of this.
The hospice nurse on call Thursday night gave me “the talk” about how to stop swallowing means to start shutting down. “You may begin to see other changes . . .”
J is just somnolent. He wakes up and communicates lucidly for about one minute, maybe takes a few spoonfuls or sips of something, then the effort seems to exhaust him and he either loses consciousness with his eyes wide open — you can wave your hand in front of them, call his name and get no reaction — or his eyes roll up in his head and close again.
It’s brutally hard, maybe impossible, for me to take care of him in this state. I used to say when I had to turn or move him, “I don’t have anyone to help me but you,” and in fact only his cooperation, however minimal at times, made it possible for me to care for him (mostly) alone. I’d have him reach across himself to hold on to the bed railing while I tugged on a draw sheet under him to turn him on his side. Then when it came time to roll him to the other side, I’d have him bend his knees and just think about rolling onto his back; that alone would incline his body to go that way (a Feldenkrais insight). Then I’d have him raise his arms straight up toward the ceiling so that their weight, going in the same direction as his knees, would help me roll him over as a unit. I could pull him up towards the head of the bed, when he’d slid down too far, by tilting the bed head downward and tugging on the sheet while he lifted himself slightly using the “trapeze,” the triangle that hangs on a chain from a bar over the bed. He can’t do any of those things now; he’s completely inert, and I can barely budge him. Even if he understands and is willing for a moment, he passes out again before he can complete the thought.
I hate to put him back in the hospice inpatient facility, because it was probably his bad experience there while I was in Chicago that got him down enough to trigger the shingles (although it had to be something, sometime). But this may be impossible for me to handle without much more help. Maybe they’ll provide more home help. Or maybe the facility is better at taking care of a really sick person than one who’s conscious and just “parked.” Maybe he won’t know or care where he is. This apartment has never been “home” to him anyway. Those moments when he wakes up and sees me and the cats could be partially recreated in the facility. Family members can sleep there, and pets can visit. Buzzy, at least, would eat it up.
UPDATE 2: Well, I’m adapting, figuring out how to do some of these new things, or old things in new ways. Also, two friends met through karate — young parents in their 30s — read about our situation on Facebook and came over to see how they could help out, and are coming back tomorrow. That helped immeasurably. I had help laying J down and sliding him up the bed, and even better, I had the kind of company where you start pulling out books and Googling things and showing them to each other.
Who Painted This?
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Out of the Frying Pan . . .
I was just going through my usual “Who am I without J?” blackout phase, as described in the (originally handwritten) journal entry below, when I learned that he’s coming home tomorrow evening.
He’s even more helpless and crazier than usual from having been sick (I got a preview of coming attractions when I tried to help him brush his teeth, and at the rinse phase he sucked water into his mouth, sloshed it around, and then either forgot how or just decided not to spit, and held the toothpastey water in his mouth until he aspirated it into his windpipe, while I screamed and tore out my hair), and he’s starting to have prickly nerve pain, though he says it’s not bad pain. (He has a rather high standard for pain.) But he will be finished with his antiviral medication and not yet certified uncontagious enough to go to the hospice facility for interim care, so home he comes. I imagine them all saying to each other behind their hands, She can do it. Let her do it. Of course, they’ll help. Some.
Being home will be much better for him, of course. He’ll regain his strength and the remaining tatters of his sanity faster. I’ve been fretting about the deleterious effects on him of merely lying around in the hospital, or in the hospice facility, so this is good. But there are a few things I hoped to use this time get done that I haven’t had a chance to do (get the van inspected; apply for Social Security). Finding my footing alone isn’t even one of them.
But if I had typed up the following this morning I would have wryly titled it, “It’s All About Me.” I won’t have time for such vapors now. Having to think about J keeps me from having to think about myself, which is both good and bad. From the beginning of our bond, through all its permutations, I have always felt gallingly monopolized when J was around, and dreadfully diminished when he wasn’t. In our sum I suppose we are both more than we would be as parts — a condition hardly unique to us. But it is exaggerated in our case, because Jacques is naturally great, “the last of the titans” — it’s nothing he does, it’s just what he is — and I bridge him to the world of regular-sized people, and in the process just a little of it rubs off. But I can’t generate that life force by myself. It isn’t something you can learn. It’s something you are. Or aren’t. When he’s gone, I’m going to turn back into a pumpkin with a thud.
If I ever write a book about him, about us, the epigraph is going to be from Goethe: “Confronted with persons of superior merit, the only way of saving one’s ego is by love.”
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10/5 Had one of those attacks of existential whatchamacallit this morning, that I have always had, or passed through, in J’s absence, when I feel like a planet that’s lost its sun. [Hmm, I typed “son.”] Even the cats seemed to be shunning me. I thought, “I’m a parasite. I’m a pilotfish. I’m a disconnected firehose.” I felt as if I had no life force, no gift for life of my own. The paradox is that I depend not only on orbiting and serving J to give me location and purpose; I also depend on resisting him. Fighting off his pressure to keep clear and diamond-dense a small space of my own, a sense of myself as not-him, but brought into definition by him, has become my most comfortable way to exist. He lifts me out of mediocrity and sets boundaries that keep me from diffusing. As often used to happen, I got into playing “my” music and dancing last night, and while it resonated plangently with disused parts of myself — twanged emotional strings going back before I met him, to my adolescence — it quickly came to seem cloying and shallow.
I’m going to have to get over this. I fear how diminished I’ll be when I fall back to just being myself. (Sense of an atom’s quantum energy levels.) He’s somehow been a challenge big enough for me. I was ambitious to be great-souled? and fear that, on my own, I’m just not? Stretched on his capacious frame . . .
When I think of writing about him it’s out of the need to incorporate him, just a little bit of his natural grandeur and largesse. But when it’s gone, it cannot be recreated. That frightens me — my inadequacy to reconstitute his magnanimity (great-souledness), even a little bit. He is irreplaceable in so many people’s lives.
He is a star in the sense of gravitation. He bends space, making it comfortable and inviting — hospitable — to roll around in, around him. What I’m feeling and anticipating is the loss of gravitation.
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Should I post that online? Nah.
[Famous last words]
You Shoulda Seen the Other Guy. [UPDATED AGAIN]
J is beating shingles. You’d never know it to look at him.
Imagine before there was acyclovir!
As for me, I’m getting the vaccine.
UPDATE: This is his good side, but even his bad side is looking better day by day.
He had a rough day, with more fever and somnolence, but it was probably our fault for giving him ice cream, which is particularly easy to aspirate because it’s a solid that turns into a liquid in your mouth. Tonight he seemed to be mending again.
The mask and gown are hospital protocol. Pregnant women and chickenpox virgins are at risk, and those of us who have had chickenpox could in theory deliver it to them.
UPDATE 2: So this is progress. At least he’s got two eyes, now. And he’s home.
A Law of Life: [UPDATED]
It’s never what you expect. Ever notice that?
This is why worrying is a completely useless activity and a waste of life. You’re always worrying about the wrong thing. It’s always something else, something out of left field that blindsides you, that you never would have imagined in a million years.
Worrying is a futile attempt to control, to be prepared. It ends up with you experiencing two (or more) misfortunes — the one(s) you imagine in gory detail and the unimaginable one that then thumps you on the head. Mark Twain: “I have been through some terrible things in my life, some of which actually happened.”
“Expect the unexpected.” That and “Persevere.” That’s a good part of all the wisdom there is.
UPDATE: And the rest of it is: “Be awake.”
Ambiance 