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. 

Touching, Looking: Replies from Liz Kuhlman

Liz Kuhlman sent two "scribblings" as she calls them in reply to the previous blog posting on desire; they're such interesting little essays we thought you might like to read them too:

Touching

In the “before,” you were always both such attractive people. Handsome and smart, funny, interesting and interested, perhaps that most of all, genuinely, generously interested in other people in a way that made us feel noticed, appreciated, even chosen.

Everyone wanted to be with you. Once on a hike, the last hike we took together as a matter of fact, Dave said, “You are our best friends.” Well, I thought, but we are not their best friends. You were and are still close to so many people. How do you manage? Right after the accident, so many people were emphasizing their personal devastation by saying, “They are our closest friends.”

But among friends, particularly among close friends of the opposite sex, there are accords, meticulously scrupulous but unspoken, related to sex. Hand shakes, hugs, kisses on cheeks, pats on the back, are allowed. Direct, prolonged looks, touches that caress are not. Smoothing brows or stroking hair is out of line. As one who has violated these accords in the past and been pilloried for it, I am acutely aware of them.

The accident has invited us to transform the accords. A vivid memory from right after the accident: Brooke was still in intensive care. Both Dave and I were there. Dave was reading aloud, I think. Brooke was feeling panicky and asked me to stroke his forehead. I was on one side of the bed, Dave on the other. It was something I very much wanted to do, that had occurred to me to do before he asked, but that was, until the asking, forbidden. It was such a relief to pour through my hand all the tenderness and comforting I felt for which there were no adequate words. I stroked Brooke’s “brow” and hair until my arm got tired. He noticed my fatigue, and suggested that Dave and I change sides of the bed so I could use the other arm. I think we were all purring.

So many other tender exchanges followed. Feeding him. I never fail to think of communion. The intimacy of the mouth: tongue and teeth. Nine month old Nicholas sitting on my lap solemnly examining my teeth with his fingers before he reinserts them into his own mouth to sooth his enflamed gums. Putting lotion on Brooke’s feet. The Gospel of John substitutes foot washing for the bread and wine story. These sublime intimacies we ordinarily deny ourselves except with young children and lovers.

Taking sex out of the tangle of emotions between us helps. Health care professionals are given permission by their training, by their uniforms and name badges, to be physically tender in a way that is not to be interpreted as sexual. Some of them, sadly, can’t do it and touch coldly. Others, no doubt, are misinterpreted and sexual transgression happens.

Brooke’s frankness in asking to be touched is a facet of the courage so many comment on. It is a gift to be invited to touch him, to communicate, commune in this intimate way.

Looking

I found Brooke’s comments on the erotic potential of vision provocative. Not in the “in your face” political sense or the porn sense, but in that they called forth a flood of thoughts.

If you tell a health care provider that her breasts are beautiful, she might well write in her notes, “Patient has poor boundaries.” People with “healthy boundaries” know better than to think of health care professionals in that way. It is unconventional. But does it transgress?

I have done a lot of thinking about boundaries, personal and professional. There is a photographer named Jock Sturges who got arrested in the early 90’s for purveying child pornography. He photographs people in nudist (or naturalist) colonies in California and France. He has photographed the same people, people he has known well for years (he is one of them), from infancy to adulthood, across generations.

His photographs are arresting (if I may), but not because they are pornographic. I saw an exhibit of his work when I was intensely professionally involved in the problem of child sexual abuse, attending, as a matter of fact, a conference on violence against children. The exhibit was not connected to the conference, but it might have been. I walked among the images of naked children and adolescents pondering. Sturges’ studio had been raided by the FBI and all his negatives seized; he had been thrown in jail. Why, I asked myself, was I so certain that this was an injustice?

No court of law would accept my answer (it is now against federal law to use a model under the age of 18 in any image that shows his or her genital area). But I stand by this hard won personal understanding of this particular boundary. Sturges’ photos, his visions, ask nothing of their subjects. They look without demanding. They are innocent of exploitation.

Brooke’s observations (both the looking itself and his discussion of desire) are very far from pornographic, but they do raise a question: is it OK for him to take erotic pleasure from looking at this care takers? What about his female friends? What about, for example, me? Would I mind? I should be so lucky.

I find it deeply comforting that Brooke is able to take this kind of pleasure from looking. Comforting to know that he can see in this undemanding way. When I first moved to New York City, I had to stop wearing the hot pants and halter tops of the day because men on the street wouldn’t leave me alone. Uninvited demands. That time of my life is past; men generally don’t notice me and I have a fond nostalgia for wolf whistles. It would have been disquieting, though, to think Brooke looked at me this way before the accident. Dave occasionally tells women, out of the blue, that he finds them beautiful. They like it (I think), but I see them also being disquieted.

Now with Brooke, though, my reaction is “Thank God.” What a gift. Looking as an end in itself. This pleasure, given and taken, is partly Peggy’s generosity, partly, I hope, a reward for Brooke’s own keen self-awareness and his own deep generosity. Who knows, maybe it’s God’s generosity.

--Liz Kuhlman

Desire, Transformed

            Walking back to Athens from the festivals in Piraeus with his philosophical companions, Socrates comments on Sophocles’ remark that the loss of desire in old age and the ability to have sex is not a bad thing:  “I feel as if I’d escaped from a mad, cruel slave driver.”  Socrates adds that there is a “great and perfect peace from such things” in old age, agreeing that it’s a relief to be old, when one isn’t perturbed anymore by thoughts about sex.  We’re lying in Brooke’s extra-width bed together and have been talking about sex, as we do every once in a long while, not so much as a matter of regret for loss but as a way of looking clearly at some of the subtle changes that physical transformation brings. 

 

            Brooke is talking about what it’s like to admire the curve of a woman’s breasts when they lean over you to do things for you, like feeding or nursing cares or adjusting your trach.  You kind of appreciate the beauty of the flesh and the color of the flesh and the beauty of the shape, he says, and you sort of reach out with your desiring mind, but of course your desiring mind doesn’t connect up much at all with your arms or your genitalia, so your eyes do the looking.  Of course nurses wear scrubs that conceal almost everything, though not wholly successfully, and some of the young nurses and aides are so trained, or so medically trained, they have no idea of how to touch somebody.  But when some nurses massage your head or rub lotion on your face--that’s after all the part of you that you can feel--and around and behind your ears, on your cheek—even though it isn’t meant with sexual intent, it’s a very sensual experience.  After all, that’s what foreplay is all about:   touch.  But if you can’t use your genitalia or they don’t work, you still feel somebody’s affection in those gestures, as sexually chaste as they may be. 

 

Of course, talk about sex is sometimes talk about kissing earlobes and stuff like that, so this may not seem very original. It’s the kind of story we boys used to tell when we were fifteen, that a girl could get an orgasm if you kissed her earlobes really well.

But now it’s when kissing earlobes is all there is; there can’t be anything more or at least anything conventional more, that things become more interesting.  Even the penis becomes essentially a conduit, something cathed six times a day by either male or female nurses in a perfectly matter-of-fact way, for which the principal use is the delivery of a satisfactory quantity of good clear urine.

 

Peggy, when I see you, when I think about your body unclothed as I’ve seen it so often, it gives me more pleasure to think about it because I’m so familiar with it, the shape of your nipples, the shape of your breasts, are so deeply rooted in my psyche, from the first time I met you, the way you feel, the way you smell, so when I see other women in the way I’m talking about here it’s not quite the same.  I’m not just saying that to flatter you. But there’s still the extraordinary spectacle of looking –looking with a kind of transformed desire.

 

One of the male therapists, to take an example of ordinary looking, is always making jokes about sexy women, the kind of jokes that married men make, slightly misogynist jokes of a guy growing older:  “what a nice tight ass she has.”  “She’s the best-looking nurse around here.”  Etc.    But even though I also see tight asses and good-looking nurses I don’t see them that way anymore, but with this new view that uncouples admiration and even delight in the female form from desire for it.    It’s not “the male gaze” anymore, as least what people in English Departments mean when they talk about the sexually-infused way men look at women, but just the same it’s something deeply pleasurable.   I can see the female form in a new aesthetic way, like looking at a painting—Titian odalisques, for instance—something that I think almost no other men except maybe eunuchs or monks or very old men are able to do.  There’s some gain in this, even if there’s plenty of loss.    That’s the paradox of this whole experience, loss and gain—you can tally up a list of 900 losses but one sometimes overlooks the gains.   Socrates, like Sophocles, is after all one of the old men and thinks of old age as relief; but whether he is aware of gains in sexual-aesthetic perception is another question indeed, one neatly avoided in The Symposium about leaving the sexual realm of material bodies behind for the truer love of the abstract, immaterial Forms.

 

It’s sometimes said that if you lose one form of perception, others become more vivid:  if you lose your sight, for example, your hearing becomes sharper and your sensation of touch more discriminating.  I don’t know whether this is true in general, but it seems to me relevant here.  If I’ve lost my sense of feeling for the most part in my hands and legs and feet and also in my genitals, something else has come into play.   It’s an increase in visual sensation, if you can call it that, particularly with regard to faces, both male and female.  I’m usually lying in bed looking up at people whose faces are close to mine as they bend over me performing various tasks:  this leads to a new and very visually sensual perception, especially of women’s faces.  Here are four faces who bent over me today alone, though I won’t mention their names, just their initials.  This isn’t all the women’s faces I’ve seen today, and it’s just the younger ones; and I’m not even talking here about the men’s faces or the faces of older women, also wonderful.  But think about the four young women’s faces I’ve seen so far today.  I notice every detail:  J. coming in with lipstick and her hair arranged in a certain way; P., who’s from somewhere in South America, with her face, her hair back and a slight irregularity in her lip; or M., with the most winning smile you can imagine.  I think if I were say 28 I’d ask them out, but that’s an entirely different scenario with (as every man knows) a entirely different objective, and this way their faces are close to me and I can devour and delight in them without any ulterior motive.  I was amused by the way M. had her hair pulled back with a little braid of her own hair; she has an oval face with a brilliant smile; if you try to look at her right in the eyes she’ll hold it for a long time before looking away.   There’s the color of P.s skin, a creamy brown, with eyes with a certain niche near the tear ducts, beautifully made up with dark eyeliner, amazing eyelashes, deep dark eyes, a mouth with that wonderful irregularity; hair tied back in a way that just invites you to untie it, which I can do with my eyes though not of course in any other way.  She looks right into your eyes;  I’d thought earlier she was trying to seduce me (as if that were possible) but I realize that she’s extraordinarily caring and not afraid to be this close to a man she hardly knows: she puts her hands on you and kisses you.  M. had a shirt with a little flounce that partly covers the crevice between her breasts; it invites staring.   J: a very mobile face, with a little bit of hair coming down over her forehead, just a touch of boyishness,: the lipstick made her look more like a woman but couldn’t hide her extraordinary liveliness.   I think she’s quite flabbergasted that I notice these things, given my situation, but I tell her I notice them.  I want her to know.  It’s all caressing with the eyes, because the sensation of touch has left me, for the time being anyway. 

            And L., hanging her head over me with her long dark hair, doing deep breathing a la Marilyn Monroe, partly to help me practice keeping the voice vocalized far forward but obviously something far more:  love, the kind of emotional and at the same time bodily love one couldn’t express except in this physically liberated way.

 

            Is this just the same view that older men often have, lusting in the background after beautiful young women?  Sure, it must be partly that.  But it feels as if it is different—those aging men still often entertain hopes, even if they know those hopes are far-fetched—but for me, there aren’t any hopes at all.  No possibilities.  Nothing.  Nada.  And that’s part of what makes it somehow curiously beautiful, what makes possible not just the dwindling disappointedness of aging but a transformed view.

 

            It’s not just about women.  There’s been so much love spoken here recently. Here are men who’ve been here in the past couple of days or so:  DM, BK, PZ, BG, GD, CH, MM.  It would be way harder to say these things man to man, if everything were just normal in the normal physical way.   But RA bent over the bed, put his face very, very close to mine, said I love you Brooke, I love you Brooke, I love you Brooke.

 

             What you lose in a condition like mine might be something about sex; what you gain is a kind of still-physical love of faces and human bodies and indeed people that transcends physicality, a kind of Platonic love but not exactly, and certainly not Platonic love in the adolescent sense.    It isn’t just about the male gaze, or losing it; it’s also about a version of Plato’s vision of love where the love of beautiful human forms ascends from ordinary perception infused with desire, to something beyond but still real and still uncannily physical; it’s about the preserved deliciousness of sexuality in a new form, a new aesthetic form, that has its own real delights.

 

 

 

Long Overdue Praise for Trib Awards

Some of you may have read the Salt Lake Tribune’s three print accounts of Brooke’s accident and its aftermath for both of us, as well as seen the two multimedia essays, essentially one of Peggy, then one of Brooke. This is long overdue praise, but we thought you’d like to know that both Peggy Fletcher Stack, the writer, and Leah Hogsten, the photographer, have won awards:

Top of the Rockies Award:

News Feature, First Place:

Peggy Fletcher Stack

“Love and theory collide”

Salt Lake Tribune

Judge's comment: Heartbreaking, fascinating story, beautifully written, a pleasure to read. So human and lovely.”

Utah Press Association

Best news or features series, First Place

Peggy Fletcher Stack

“Love and theory collide”

Salt Lake Tribune

The Best of Photojournalism 2010 (national contest)

Feature Audio Slideshow, Third Place

Leah Hogsten

“Metamorphosis”

Salt Lake Tribune

Here's the link:

http://bop.nppa.org/2010/web_sites/winners/index.php?cat=FAS&smc=UNDE&place=3rd

Brooke (and I) are very proud of both Peggy and Leah, with whom, needless to say, we've spent a good deal of time over the last year and a half while they were working on these stories—we keep saying we wouldn’t have wanted to talk to any other reporters, but we think they’ve been amazingly sensitive to our situation and phenomenally careful and responsible in their reporting.

Pacer Update

            Two weeks after our last account of the diaphragmatic pacer, Brooke is now on the pacer for about eight hours a day, usually three hours or so in the morning and five in the afternoon.  He is able to be hoyered into his wheelchair and to go downstairs to the rehab gym while the pacer is in action, and he can talk quite well indeed—at low volumes, higher volumes, and in sentences with as many as fifteen syllables. This has happened in just two weeks—rocket time, it seems.  He can recite poetry, and he’s working with the speech therapist at making his voice less gravelly and more fluent, to try to prepare it for everyday life and using his voice activated computer again (which he hasn’t used for some time). The psychological breakthrough occurred sometime in the middle of last week, he says, when he broke through his resistance and fears about being physically lifted into the chair with the external pacer battery-pack attached in a fanny-pack around the belly,  and decided, what the hell, I have to do it sometime, so let’s do it now.  

Oddly, though, we don’t have anything particularly profound to say about any of this, except that it’s uncanny to be approaching “normal” breathing.    Life in this room has become a very practical affair; alas, no more deep spiritual experiences in controlling breathing, just breathing while listening to books on tape and sometimes almost sleeping during a session while the books-on-tape voice drones on in the background.    The photograph of the Buddha is still on top of the armoire that holds the television, but I don’t relate to it as I have in the past; I’m just working hard at this point to strengthen the diaphragm and push as hard as I can to get to the point when I can be on the pacer for not just 12 hours at a stretch, but 24.  The doctor even says that it may be possible to experiment with taking the pacer away for a period of time, to see if the diaphragm has become strong enough to allow me to breathe entirely on my own for a longer period of time.   We’ll see. 

            What happened to that communication with the Buddha image?   When I was doing trach mask, I was really conscious of breathing out, breathing in, voluntarily and deliberately, but now the pacer breathes for me.  I take deep breaths, at the advice of the speech therapist, but it’s not quite the same.   The pacer breathes for me 14 times a minute, no matter what.  Of course, I knew this would be different, but while it still requires endurance it takes away some of the beauty of that earlier effort at breathing.  Actually, now that I think about it, it’s also peaceful to lie here calmly while the pacer is working, observing inhalation and exhalation, rather that trying to do it:  just letting it happen.   

I’m also learning how to speak on the exhalation.  Poetry seems to sound better somehow on the pacer, perhaps because one has to deliberately pause because of the pacer’s rhythm, and that can give emphasis to the rhythmic complexity of various lines, like the opening line of Keats’ To Autumn:  “Season of mists and mellow fruitfulness…”      Peggy was sitting in the green chair grading papers (it’s the end of the semester) and I was reciting these lines; they sound pretty good.  The speech therapist is trying to get me to talk not with my larynx but also with my face, lips, cheeks, so I’m to speak in an exaggeratedly mellifluent way:  SEAson of MISTS and MELlow FRUIT-ful-ness….     We’ve been listening to Tony Heilbut’s new DVD How Sweet It Was of the great era of gospel singing in the 1950’s—now there’s mellifluent articulation, indeed sweet it is. 

            But none of this leads to deep questions of the meaning of life or the whys and wherefores of accidents, or why the nights should be so filled with spinal-cord pain and sensations of burning or freezing, but just to the goal of being able to breathe and speak normally enough to come home, to teach a class in the fall (which I’m planning to do through OSHER: the topic is Thoreau’s Walden, which needs to be read very deliberately, carefully, perceptively—but that’s another story, for the class).    Peggy’s still working on modifying the house, and a wonderful neighbor came this morning and planted pansies in the empty pots sitting on ledge in the front porch, and the early-May snowstorms seem to be over and things are looking pretty good.    Eight hours on the pacer.  Modern technology.  Wow.