Thursday, May 27, 2010

Hopscotching Through Good and Not Such Good News

            Actually, the good news came first, but you get the not-such-good news before it—the news about Brooke’s little incipient pneumonia, something confined to just the very lower part of the right lung.  It makes him feel terrible:  exhausted, weak, helpless, even despairing, with severe whole body pain.  There’s some good news: all his labs so far are good:  no evidence so far (though some bugs take longer to grow out) of any infection, and in particular no urinary tract infection, a frequent occurrence in institutions but one Brooke hasn’t had (knock on wood) for a long time.   The doctor has ordered his specialty cocktail of three big antibiotics, so we have occasion to discuss once again why it is that the insistent beep-beep-beep that an infusion pump emits when a drip is finished does its beep-beep-beeping next to the patient’s ear, instead of wherever the nurse is—that is, why alarms ring in the patient’s room instead of on a need-to-know basis, where there’s somebody who could do something about it.   (More on this topic sometime later.)

            There’s more to being sick.  You do feel terrible, weak, exhausted.  Brooke said yesterday that you know you’re really down when you start thinking about your own funeral, and he thought about it enough to decide that he wants the slow movement of Beethoven’s opus 127 quartet, and Marion Williams singing “It Is Well With My Soul” on Tony Heilbut’s DVD  How Sweet It Was.   He’s been so tired that he’s had to be back on the vent some of the time; at the moment, in the interest of extra lung volumes, he’s on both the vent and the pacer. 


            Even before he felt really sick, the day before, we’d been talking about helplessness.  Peggy, we’d just discovered, may need to have a minor hernia repair, for a little rupture probably associated with lifting heavy things and perhaps with moving Brooke’s shoulders in the bed without being adequately trained in how to do so (this apparently affects lots of new caregivers.)   We’d been writing this way:


            When Brooke heard about Peggy’s impending hernia operation, his first response, which was deeply visceral, was oh my god, I can’t be there to help her.  His feelings of helplessness almost overwhelmed him.  Ordinarily, if Peggy were having something like this, Brooke would be at her side, taking her to the hospital, waiting in the waiting room,  taking her back home, feeding her and nourishing her and being as present to her as possible, trying to comfort her as much as possible.  Hernia operations are notoriously deceptive; it’s often the case that an outpatient procedure like this, even if it involves a general anesthetic, is said to be minor, almost trivial, but in fact—Brooke’s own experience of some years ago and the experience of others we know who’ve had similar surgeries—can be anything but the case:  you don’t just pop out of bed the day afterwards or the day after that or maybe even the day after that and go right back to normal. It takes time to recuperate.  It tears Brooke’s heart that he can’t be there to help, that he’s paralyzed in his own bed at South Davis and he’s unable to do anything except offer love and encouragement.

            These feelings hit home very powerfully while he was talking to Peggy, during one of our ritual 8:30-in-the-morning telephone calls.  Suddenly it came to him that the feelings he was having of helplessness and sadness about his inability to help Peggy were extremely primitive, instinctual, primordial feelings.  To be cut off from the capacity to nourish someone you love deeply is an almost terrifying prospect.  It goes against something extremely deep in human nature and the nature of long-term loving relationships.  The love and desire to feed, to nurture, to protect, to aid—there it is, he said, and I can’t do anything about it.


But that was two days ago, and there’s been lots of distress in between: the pneumonia, problems with breathing, weakness, exhaustion, moments of despair, and sometimes awful whole body pain.  Peggy feels a corresponding (though of course minor in comparison) helplessness in not being able to do anything for Brooke, either during the period of her recuperation and for that matter during his pneumonia right now, so she understands at least a fragment of what he is feeling.  Helplessness for oneself is one thing; helplessness when you cannot aid someone else you love is in some ways even worse.


But we said that there’s good news and not-so-good news.   Fortunately there is really good news.    The really good news is that starting a week and a half ago, Brooke did 25 hours on the diaphragmatic pacer, then a tiny break, then 18 hours on the pacer, then a tiny break, then four entire 24-hour days nonstop on the pacer.   Then there were some terrible muscle cramps apparently due to the jolting of the pacer, but that was readjusted to minimize the jolts and Brooke did four more entire 24-hours days nonstop.   What’s especially fabulous is being able to be on the pacer all night—we’d originally thought he might have to retreat to the vent at night, but that’s obviously not going to be necessary—hooray.  He should be able to be entirely vent-free. That’s really  good news.


            Right at the moment, here at ten o’clock at night just as Brooke is about to go to sleep,  we’re having a discussion about whether the good news in this blog entry should come first and then the not-so-good news, or the other way around.  The triumphs on the pacer happened first, chronologically speaking, and the pneumonia is what’s going on right now.  Right now is definitely not so good, though the doctor says that it’s an “early catch”; after all, it’s getting immediate and aggressive treatment, and Brooke should be feeling better in 36-72 hours.  But this “right now” doesn’t last forever (except in a conceptual sense) and the next “right now” will be better.  The really good news is not just in the past but in the future (this is a little like Cortazar’s Hopscotch—you can read this entry in any order): we can see that the pacer really works, and furthermore that it can work all the time, not just in the day but also at night—and all the signs are that Brooke will really be able to get off the vent, once and for all.   He’s obviously not there right now and he isn’t feeling better right now, and he actually feels terrible right now, but there are better right nows coming in the future, good news indeed. 


Lorraine Seal said...

Your recent posts have taken me all over the emotional map, so much so that I have been unable to organise my thoughts and respond with the feelings they have inspired. Perhaps this morning the best thing to do is this: simply say I'm reading and am much moved by your reports, from the perspective of each of you.

I am affected particularly this morning by Brooke's realisation of the primordial need to be able to offer care and sustenance to those we love. Sure, we can offer love and support, send good wishes and light through our meditation or prayers, and sometimes that's all we can do. But what we want is to be there, caressing, soothing, helping, and sometimes that's denied us. It's very painful. Thank you for articulating that so clearly.

However, I'm glad you ended on the really good news, the terrific news in fact, and, knowing that these setbacks will pass, I celebrate Brooke's progress toward being off the vent entirely. Great news!

You both remain in my thoughts and prayers daily.


ed ranney said...

Hi Brooke and Peggy,

I'm hoping that after the weekend there's been some improvement, especially in Brooke's infection, that it was caught quickly enough so as not to be terribly bad and uncomfortable, and that Peggy's hernia also may be getting resolved. I'm sure the latter is different for everyone, but hopefully as for one very vigorous younger friend's experience, his biggest worry was being sure surgeons worked on the appropriate spot, so he marked the designated side with a felt tipped pen so he could rest assured during the procedure...they did get it right, and I know he's once again very vigorous...most important of course to really take your time in resisting any over-exertion from what I hear.
But that is such good news about the independence the pacer gives Brooke from the vent, even at night - sounds like a really important step forward, and a development that gives really great hopes for the future. great work.

That was such a wonderful earlier posting regarding the musings on eros, desire, sensual appreciation, etc, which I'm sure could bring up a whole host of different reactions from different readers. Touching and a delight to read - wonderful too to have an insightful posting of a female voice, which helps keep it all in the correct perspective.

On the broader spectrum we are all in a depressing situation - the gulf oil leak seeming to undermine all our hopes of careful control of our environmental incursions, clearly a long-term infraction that will color policy, politics, and sadly, our present leader's strength in leading us. Not a proud moment for any of us. Rats, damn it all.

Melanie's off for Scotland next week, her own first individual foray after recovering from sarcoidosis, so that's a reassuring note, with hopes of course that icelandic volcanos remain less active so that she can get back as planned! And technocrats claim to have gained control over nature, what a joke...on my end a prairie garden was planted over the weekend, now we'll see if gophers, hail, wind and whatever else there may be will allow some produce to materialize..

thinking of you both, love from all