The Thing that Makes Me Quail
— you could almost call it an existential challenge — is the silent, empty days when friends are sealed off in their lives somewhere, busy and preoccupied, without the magnanimous excess it takes to attend to us; when none of the bustle and substitute social life of hospice is scheduled (the two aides who bathe J would normally come today, but rescheduled for tomorrow); when we two might as well be the only people on a deserted planet. There is no perspective, no matter how my mind tells me “This too shall pass,” “Tomorrow will be different.” (It will!) No, it is an eternal present, and it feels like the bedrock, the baseline, of our condition laid bare. Everything else is a temporary reprieve, a weekend pass from prison, a kind lie.
J has been a little bit sick — aspiration bronchitis, I guess you’d call it — well short of pneumonia, but labored, rapid breathing and a low fever. The hospice doctor agreed to an antibiotic, and he’s better. But such episodes (pretty rare for now) remind me how little time we have. Every day he’s weak and out of it like that, he loses double the ground from being unable to do the things that keep him going: sitting up in his chair, getting out of the apartment, doing a little bit of exercise, or going to the pool, for which he has to be strong enough to pull himself up by a grab bar while I hold him up by his waistband and two lifeguards quick swap the water wheelchair under him. It will be a week or two before I’m confident that he’s regained enough strength even to try. Too bad, because it’s the only thing worth taking him out for in this heat.
Hospice also convinced us to accept oxygen. I’ve been nervous about having it in the house after the fire. We do now have the whole nine yards, cylinders for portability and in case of a power outage, which is overkill since J can and mostly does live without it. But there’s also a machine that takes it right out of the air. When J’s breathing is compromised, he clearly doesn’t get quite enough oxygen to a brain that’s already in other kinds of deficit. So I’ve been giving him both a nebulizer mask with bronchodilating meds and a nasal cannula with oxygen, as much as he’ll tolerate gadgets on his face, which isn’t much. The oxygen gives him more mental energy, and that turns out not to be a particularly good thing. It doesn’t dispel his confusions and delusions, just kind of supercharges them. And today, it seemed to make him more aware of his boredom and purposelessness as I worked and swilled away at the engrossing social tit of the Internet while he sat there, propped up on the side of the bed. He is blessed to be rarely depressed, but today I was concerned enough to ask him if he was, and he admitted it.
What do I do then? Well, I go into overdrive. I get him washed, dressed, and up, acting as busy and jolly and silly as a barrel of monkeys while crying inside, for him (Ridi, Pagliacci!). I shut the computer and resolutely put it away even though this blog post is already forming in my head. I work out with him, doing my karate slowly while he, sitting in his chair, does the vestiges of his (often his left foot moves when he tries to send a message to his right one, or he can’t alternate left and right hands but uses both at once). I make him an old faithful favorite thing to eat (three fried eggs) and an attractive new thing to eat (avocado and orange salad, slices alternating like flower petals). I put jazz on the CD player. He was probably depressed in part because he was hungry, having declined breakfast. He is easily led back to enjoyment of the basic pleasures of life. He reminds me of his mother, whose mild martyr complex could always, always be dispelled by a good joke. Neither of them could ever resist an invitation to laugh.
Now he’s watching Silence of the Lambs, which I assure you will make him him very happy. I’m about to go finish my workout, which, along with coffee, floats my boat. And the day is over. Tomorrow will be different.
Ambiance 
david said,
July 7, 2010 at 7:32 pm
Want to leave a comment — a hug — even though I don’t know what else to say.
amba12 said,
July 7, 2010 at 7:43 pm
Don’t say nothin’ — come visit!
Ron said,
July 7, 2010 at 7:57 pm
You just break me up…I wish I could visit….but I’ll talk anytime.
wj said,
July 8, 2010 at 8:53 am
And any time you feel all alone in the world, just put something out here. We’ll all kick in comments, if only frivolous ones, to let you know we are still here and still care.
Eric Williams said,
July 8, 2010 at 9:13 am
I haven’t been following your blog lately. Sorry to hear J is doing poorly. *hugs*
amba12 said,
July 8, 2010 at 9:32 am
Thanks, friends. (Eric, I was devastated by that story you tweeted. Sirenomelia, shudder. Sent the link to a friend of mine who had been through much the same, and she commented.)
A said,
July 9, 2010 at 6:00 pm
I had somehow missed this post, so my expression of support is not very timely, and though I know you get through and get through and get through, timeliness matters. A very hard gig, and you have some major f*cking true grit. We can at least bear witness to that.
Peter Hoh said,
July 9, 2010 at 8:51 pm
Feeling alone myself this week. Had a nice visit with a friend today, and that helped. Wish I could pop by your house for a chat.
There’s a possible trip to NC in my future, but it may not happen until next year. Still, I’ll make every effort to visit.
amba12 said,
July 9, 2010 at 8:56 pm
I would love that, Peter!
Donna B. said,
July 11, 2010 at 12:56 am
Ahh… Amba. A virtual hug is all I have to offer.
Bill Rogers said,
July 12, 2010 at 8:12 am
Regularly, in my declining years, I read and admire your reflections. Over the past week, we drove from Charlotte to the OBX for a holiday, passing through your neck of the woods. Two thoughts for you:
You are not the “only people on a deserted planet.”
On Friday night, I spent several hours on the beach, positioned beyond light pollution issues with my “Google Sky Map” in hand. (We were attending a family reunion on the “OBX” Outer Banks of North Carolina.) To have lived long enough to view the night sky with the aid and instruction of this technology is beyond my imagining. The precision of labelling dispels the awakward guessing known by all amateur astronomers.
This Android app is the perfect addition to any mobile phone. It can turn a normal run-of-the-mill night into a night of beauty and expand celestial discovery. There is much to be discovered out in the wider universe and this app allows the owner of a cell phone it is installed upon to be part of the wonders of that discovery.
amba12 said,
July 12, 2010 at 9:38 am
Hello Bill, it’s good to hear from you!
This is the first suggestion I’ve had that makes me think it would be worthwhile to get one of them fancy-ass phones (just as watching the Macy’s fireworks made me fantasize for the first time about HDTV!). Mostly, I think such a phone would be a nuisance and a distraction. I spend far too much time staring at a glowing rectangle as it is.
One of my jobs as Natural History magazine’s copy editor and fact checker was to go over Joe Rao’s “Skylog” column every month. He’d flag interesting phenomena in the sky for that month. Of course there’s a LOT of light pollution here in the Triangle, but I could still spot some of the brightest players. I’d use Sky and Telescope Magazine’s “SkyChart Interactive” Java app to confirm positions and times (two months in advance). Since the magazine suspended publication in February, every time I notice the phase of the moon I feel sad. I’m hoping it will be able to start up again, for quite a few reasons. I’d have a job again, for one, but at least as important, I’d get back my ringside seat on the cosmos from the nanosphere to the Big Bang and everything in between.