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.”
* * * * *
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.
* * *
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.”
Cast the First Stone.
Elizabeth Scalia — The Anchoress — tells why she remains a Catholic in the face of the revelation of human, hidden, power-protected sins.
The darkness within my church is real, and it has too often gone unaddressed. The light within my church is also real, and has too often gone unappreciated. A small minority has sinned, gravely, against too many. Another minority has assisted or saved the lives of millions.
But then, my country is the most generous and compassionate nation on Earth; it is also the only country that has ever deployed nuclear weapons of mass destruction.
My government is founded upon a singular appreciation of personal liberty; some of those founders owned slaves.
My family was known for its neighborliness and its work ethic; its patriarch was a serial child molester.
The child molester was also a brilliant, generous, talented man — the only person who ever read me a bedtime story. I will love him forever for that, even when I wake up gasping and afraid.
I am a woman with very generous instincts, and I try to love everyone, but I am capable of corrosive scorn. Have I been much sinned against? Yes. So have you. Have I sinned against others? Oh, yes. So have you.
Damn, that’s breathtaking.
It Doesn’t Take a Telescope
Grand go the Years,
In the Crescent above them–
Worlds Scoop Their Arcs–
And Firmaments–row–
Diadems–drop–
And Doges–surrender–
Soundless as Dots,
On a Disc of Snow.
–Emily Dickinson
[Courtesy of new-old friend Arthur Boehm, on facebook]
There’s A Lot to Be Pissed Off About, But . . .
I’m worried that people like being pissed off much better than they like getting things done. And that’s one of the reasons why there’s so much to be pissed off about.
Being pissed off is an addictive drug, maybe literally. It’s exciting. It is sensation in a deadened and deadening world. It mobilizes adrenaline and fight-or-flight feelings that are primal and revitalizing. And it reinforces our feelings of being right and righteous. The feelings that drove small tribal wars in hunter-gatherer times, probably helping human groups compete and cohere. (Just read about how, say, the Lakota despised the Crow, traditional enmities that European colonists were able to exploit until it was too late for both and more.)
When one extreme gets in power, you have to go to the other extreme to push them out. Thus the Obamites and the Tea Party. I would vote for the latter even though they are too far right for me, because the Dems are too far left for me.
But the extremes push each other to extremes. Obama claimed to be willing to compromise (and indeed, some leftists see him as unacceptably centrist). Republicans claimed that was just lip service and the Dems were all about ramming their radical agenda through, so they refused them any bipartisan window dressing. Repubs say the Dems never really meant to listen and compromise. Dems say Repubs never gave them a chance. The whole picture is contaminated by power-seeking. If Repubs actually helped Dems accomplish something, the Dems might get credit for it and stay in power. Meanwhile, Dems think the way to stay in power is to paint the Repubs as total obstructionists, “the party of no.”
It’ll tell you something that my favorite politician (God, those words grate on my ear — oxymoron alert!!) is Lindsey Graham. Almost nobody can stand him: to Dems he’s a conservative, to conservatives he’s a RINO. But while there are wimpy, wishy-washy RINOs, I think Graham is a gutsy one. He seems willing to sacrifice getting reelected to do what he thinks is right, and what he thinks is right is to disagree where necessary and compromise where possible. He commits the cardinal sin of the day, which is to acknowledge that we (right and left) still live on the same planet, in the same country, and have a mutual stake in it. The metaphor of King Solomon and the baby often comes to mind. The real mother is the one who would rather give up the baby than even entertain the idea of it being cut in half.
If more pols on both sides of the aisle were like Lindsay Graham, maybe more would get done that actually worked in a both/and, neither/nor kind of way, and the country would be in better shape, and people would be less pissed off.
BUT PEOPLE LIKE BEING PISSED OFF . . .
Party Hearty
Rebecca, a former actress turned energy healer, has been our friend for 30 years. Visiting from Arizona after being out of touch for some years, she gave us energy treatments, cooked and filled our freezer with food. She says we fed her for 10 years in New York, and now it’s her turn. Rarely have we felt so cherished, or shall I say pampered?
Ambiance 