Monday, April 27, 2009

On Regression

Brooke writes (with Peggy taking dictation):

Regression. It comes from the Latin regressus, “to go back.” Regression is used in psychoanalytic parlance to mean a return to childhood, perhaps under conditions made possible through psychoanalytic work. Of course there are many other ways we use the word regression, but mostly people who speak psychoanalytic parlance use it in this way: “he is regressing to an early childhood state,” “she is regressing as a result of transference with her analyst to traumatic experiences she had as a child,” and so on.
It occurred to Brooke the other morning at about 5:00 a.m., when he was waking up, being turned on his side, and having a suppository inserted in his rectum, as it is for bowel care every morning (the good news, from the standpoint of spinal cord recovery, is that he can feel this)—he had the sense that what he is experiencing is in many ways a regression: almost everything about his condition and treatment involves what we would ordinarily call regression, although not a traumatic one. He is painfully learning how to breathe again. (Actually, babies don’t have to learn breathing, except perhaps when they’re spanked at birth.) He is fed by someone else, a nurse, an aide, a friend. His orifices function the way an infant’s do—what the nursing profession calls “bowel care” is much the same as what a parent does in cleaning up a baby’s poop. He sometimes wets the bed; his sheets are changed. He has to be picked up and moved from the bed to a conveyance—a shower chair, a wheelchair—in order to go anywhere. He has to be bathed by others, mostly women (there are fewer male nurses here than at the university rehab unit). He is put to bed in the same way, by someone else, and often with the same care that an infant is put to bed—his diaper checked, his covers arranged, and he is scrutinized for anything about his condition that might be amiss. And, no doubt like an infant. he sometimes has fears: of abandonment, of being treated roughly, of being shouted at when he cannot shout back, all stemming from physical helplessness.

This is what the word regression, to go back, signifies, if it signifies anything; anyone who has been seriously ill or spent a lengthy time in a hospital knows this. This is especially poignant for Brooke, since as an infant he had a nurse who took care of him. Her name was Nelly, and she came from Hungary, from the Austro-Hungarian empire; she must have come to the United States sometime after the first world war. Sometimes, when Brooke is in his regressed state, he remembers some of the gentleness and kindness of Nelly; sometimes when he is being treated roughly (like a sack of potatoes, he calls it), the nurses seems like witches, though this doesn’t happen very often. Mothering figures are often shattered into fragments during the regressive episodes: Good mothers, bad mothers, good nurses, bad nurses, everything in between. He has fears, although some of his worst fears about the vent-weaning trials are waning.

Vent weaning takes willpower and hard work, something infants don’t have, so Brooke is not fully regressing. He is something between an infant, a child, and a fully functioning adult. One thing about this regression is that Brooke will have to speed up his growth into a very short space of time, say, three years or so, by which time he will have learned to use a voice recognition computer, will have learned to write, will have written part or perhaps all of the book he has in mind, will have learned to send e-mails, to order things from the library; he will also have learned how to move himself, either by walking (hopefully) or by using a sophisticated machine which can open doors and turn on stereos and so on and so forth. Since he is now 67 (which doesn’t seem particularly old to him), his target date for full maturity at this point is 70, which also doesn’t seem particularly old to him. Age has taken on a whole new dimension as a result of this spinal cord injury; it is regressing into infancy and re-maturing over the distance of a whole lifetime in the space of just a few years.

Friday, April 24, 2009

The Feeding Program

Here’s the most recent development: after five months, Brooke’s feeding tube has finally been clamped off, the night feedings he’s been getting discontinued. This is something many of you have had a hand in: so many wonderful people have been bringing him so much wonderful food (and wine) that he doesn’t need supplements anymore. He eats everything (except turnips, he says), and he eats like a horse. Right now, we’re eating lunch: potato chicken soup, deli sandwiches, cold tortellini salad, garden salad, tiramsu, all from Granatos, courtesy of some friends from the university. Last night, it was a chicken curry. The night before, something equally tasty, and the night before that too. You’d think lying in bed much of the day would mean that he doesn’t need much to eat, but in fact he works hard—the breathing trials, the physical therapy, and all the talking, not to mention rebuilding muscle—that he seems to need lots of food. Besides, he enjoys good food tremendously—so thanks, many thanks. It’s not only the progress that having the tube feeding discontinued represents that we want to celebrate, but the friendship it represents as well.

Peggy (and Brooke)

Sunday, April 12, 2009

Celebrating Easter

So here we are having Easter dinner—leftovers of a delicious lunch brought by wonderful friends—salads from Trio, a local restaurant that’s a favorite with the university crowd. These leftovers have been in the fridge down the hall from Brooke’s room, stored away in their doggie-bag take-out boxes, but they’re almost as good as they were at noon. Then there are two glasses of red wine, left over from a much earlier occasion but still enjoyed. It’s a richer Easter dinner for us than any we can imagine—no big ham, no sweet potatoes, no painted eggs, but still wonderful. We would have liked to be at Obama's seder, but here at South Davis, it's Easter.
This may be painting too rosy a picture. Yesterday, the day between Good Friday and Easter, both of us descended into our own private hells, after having had little sleep the night before, and having undergone a rough trach mask trial. It was in the early afternoon. Peggy, exhausted after getting back from her first trip out of town, to a philosophy conference in Vancouver, hadn’t slept, she thinks, because it signaled a return from the everyday world outside to the rarified existence we have here. Brooke hadn’t slept for all the usual reasons: anyone who has ever been in a hospital knows about all the nursing interruptions, though he usually sleeps right through them now. So by midafternoon we were both quite low, and for the first time Brooke felt, he said, that he didn’t want to go on breathing—that is, trying to breathe. It is such hard work. We’re told this feeling is common among people undergoing vent weaning, but that doesn’t mitigate its extraordinary power. Brooke says he didn’t consciously want to die; he just didn’t want to try to be breathing any longer, it was such hard, hard work. And Peggy—having had a first taste of the outside world, an elegant city, out of the country, vibrant in the sunshine, seemed tempted by ordinary life, far away from these troubles.
But by an hour later, after we’d each slept a little, things changed. Brooke said, We have to be strong. And, after a few more tears, we were. Then Brooke had a much stronger session on the trach trials—40 minutes this time—and then Peggy did a little range-of-motion exercises (learned from the pros around here) with his limbs in the bed. Left hand: thumb, forefinger, pinching together the thumb and forefinger, thumb and middle finger, thumb and ring finger, and almost thumb and pinky. These all represent different dermatomes, nerves at different locations on the spinal cord. The left hand can move voluntarily back and forth. No upper arm stuff yet. Meanwhile, the right hand is catching up, slowly, but catching up. And the left leg moves: back and forth, knee up and down, and while the right leg isn’t as active, the right toes move. And he can move his shoulders and some trunk muscles. And when he does this all at the same time, it’s as if he were coming alive again, after these long five months—especially the early months when his entire body, below the tops of his shoulders, was completely inert. Neither of us is particularly religious, but the sense of resurrection is uncannily real—from a body that seemed so completely dead to any sensation or activity, so utterly motionless, so totally paralyzed, to one in which there are stirrings of life. He is still of course nearly completely paralyzed and without any effective function, and there are still terribly difficult moments, but things are nevertheless improving, even if very, very, very slowly.

We had a lovely dinner together that night, leftovers from a wonderful dinner with friends the night before—Morroccan tagine, couscous, beet salad, a spectacular apple tart. We talked, talked. And kissed. And today, Easter, we’re again eating leftovers, but even more fully imbued with this remarkable secular sense of resurrection.

Brooke and Peggy

Saturday, April 11, 2009

More Strange Coincidences in the Canyon

Some of you may have missed this, since it was posted as a comment to the blog (March 30), but those of you who want to help me fit the pieces of the account of my accident together will find this interesting, especially in view of all the other remarkable coincidences that occurred that day in City Creek Canyon. Talita says it’s fine to post this again for you.

Dear Brooke,
I am so glad that I found your blog. I was very worried about you and what happened. I was on a walk in the Canyon, the day of the accident, with a good friend, the person who gave you mouth to mouth. I am the one who helped the flight nurse turn you over and I searched your clothes for your ID.
I had no idea who you were at the time of the accident, simply did not recognize you. You know why that is so strange? Because Spring 2007, I taught right after you in the same class room and we always talked. I was in a different department but of course I had seen you many times in the hall, and after we were "class room buddies" we always talked for a few minutes in between our classes.
None of us knew how serious your injuries were but you did not look good. I saw the accident on the news that night but since they failed to identify the victim, I still did not know who you were. Then, a few weeks later I saw a report on the internet and realized it was you, Brooke. I am so sorry you are hurt but delighted beyond words that you made it.
I just found your blog and I finally have a way to contact you. I hope you will continue to be in good spirits. You are an amazing person!!!
Love, Talita, your former class room buddy
P.S. BTW, happy belated birthday, just saw the blog entry, hope that you felt much loved on your special day!

Monday, April 6, 2009

The Virtual Birthday, in Pictures

Brooke's virtual birthday party was wonderful, with floods of cards, e-mails, wonderful little notes on scraps of paper, everything. (As before, we're still opening them!) Here's a particularly elegant one, a log of a third of a century of adventuring with Gale Dick:

To Brooke on his birthday 2009

Dear Brooke,

You have been the best of friends, an indomitable traveling companion and stimulating colleague through the years. You are even dearer now as you work your way back to health and mobility. Scores of people rejoice at every step forward, not the least of them me.

I’m thankful for the many hours and miles we have enjoyed together.

Where all have we been together? First of all there have been the ski tours and hikes in the Wasatch, including those special tours from Little Water Peak over the ridge to the top of that wonderful powder run down what Roger and Jane call Nord’s Hill. Maybird, Gobbler’s Knob, Red Pine, White Pine. Then the treks to the Wind Rivers including one to the beautiful and remote Cook Lakes from which we climbed a pass to the northwest and wandered back to Elkhart Park. The one where we climbed Fremont and your sister Lisa injured herself. And then the dramatic and stormy stay at the high camp above the New Fork Lakes where you and I and Ann hunkered in one tent and, earlier on, we had a long vexing struggle with a plugged up camp stove.

We went with Bill and Kip and Bob Plummer up in the North Cascades on an attempt to climb Glacier Peak. We never even saw it and endured hours and hours of rain. On the way out we drank champagne that Bob had cached at a hot spring and limped into the parking lot sodden and footsore. We saw Viet Nam before it started to boom and were baffled by the quickness with which the fell American presence there had seemingly been forgotten. We went to Yunnan, via Guilin, visited that “Shangri-la” town near the Tibet border, heard Tang dynasty music and met a Nature Conservancy guy in Kunming who inquired about the activity of Louise Liston, Garfield County commissioner. Great trip to Kashgar on that highway along the southern edge of the Takla Makan desert – the Magao Caves. We stayed in that wonderful converted farmhouse near Pitiglano in Tuscany. Jon, Lise and and I played music and we ate and drank well with Jon and Cristina Lindsay, Lise Brunhart, David Wertz. It’s a good part of the world.

We need to add to these geographical adventures our strenuous intellectual voyage through super ITW – nearly two years of reading, thinking, learning and interacting with one another and with students. It was fun. It was laborious. I loved it.

We skied the Selkirks from a hut we reached by helicopter along with Chauncy and Emily, Kip Wallace and Howie Garber. Sang to a guitar, ate well, wore ourselves out climbing and skiing.

And then there was Venezuela with the trekking along the crest of the northern extreme of the Andes. Tough going for me, but even El Viejo de los Andes made it. We saw condors and heard the story of the deeply depressed porter (or was he a donkey driver) who had taken up with young girl – likened to a man looking down a cliff being tempted to jump – who had been put in prison and was bailed out by his mother who had to sell the family land to get him out. Gorgeous country full of Easter revelers.

At the top of the Mèrida Tram that goes up to Pico Bolivar 
(was that the name of the mountain?)

There have been wonderful times around Torrey working out from your and Peggy’s house. You’ve given much happiness with your generosity in the enjoyment of that place.

Can’t begin to count those times – the one where we both skied on Boulder Mountain and hiked to the Great Panel in Horse Canyon. The hike out to the Red Breaks with its exceptionally important conversation. The attempt to climb a peak in the Henrys where we met snow banks. Repairing and painting the deck. Trying to seal the west end off from the woodpeckers.

There was the trip down Grand Gulch and out Bullet Canyon. The three weeks running the Colorado from Lee’s Ferry to Lake Mead. … We’ll think of more.

As good as these places and these exertions have been, the best part has always been the companionship and the conversation. I love to hike, I think, because of the opportunities to talk with surrounding beauty as the only distraction.

We talked last summer about going to Timbuktu. Let’s do it.

The past has been great, the present is hard, but there is a future and I intend to share it with you.

Love from your friend,


Wednesday, April 1, 2009

Birthday and Breathing

Brooke came to the long-term skilled nursing facility at South Davis for vent weaning—that’s the immediate goal here, and this is a facility that specializes in vent weaning. He’s been here almost exactly a month now. But vent weaning has been a long, rocky road, the last weekend in particular. There had been some promising developments earlier on—at one point, he had managed 53 minutes off the vent, but that had seesawed down to 20 minutes, then up again but down to10, then down to 5. It was about then that the Tinker-Bell call for the Virtual Birthday Party went out—help keep that light brightly alive. Send cards, e-mails, scribbled notes, I’d urged, anything. The vent-weaning stuff had gotten pretty discouraging, despite all the positive messages the respiratory staff kept sending—but the numbers weren’t there. Brooke said he was confused by the various strategies—go for long times, go for deep breaths and high volumes, etc.—and finally after some consultation a uniform program was put together. Train the way you do for a marathon: don’t start out by trying to run all 26 miles as once, but work up to it in short pieces. But it was still hard, and still discouraging, to still be on the vent after four long months.

The new program has involved doing 15, then 20, then 25 minute sessions off the vent, twice a day, just with a mask over the trach opening to supply humidified, warmed air (this is what the nasal passages normally do, but it doesn’t happen if your air comes in through a hole in your throat), with a little extra oxygen. Even these relatively short sessions have been very, very arduous.

But this morning, he says, was qualitatively different from all the other mornings. From the beginning, he says (and now I’m taking dictation from him), he knew he was feeling a new strength, partly because he could visualize his diaphragm for the first time (thanks to a quick anatomy lesson from Mike during a brief visit here) and what inhalation and exhalation were actually doing, how they were affecting the diaphragm. At a certain point, about midway through the 30 minutes, he began to feel that his breathing was not only stronger, but that every breath had become a joy, and that he had suddenly realized that the pleasure of breathing was something that was an end in itself, and that he needed nothing else. For the first time in his life, he says, he experienced what he had always been looking for in Buddhist meditation, but had never actually found: the full life of breath. By the time the 30 minutes were over, he says, he had attained a serenity beyond anything he ever expected to experience in his life.

If you want confirmation of this, ask Pat Zwick—who saw it on Brooke’s face when Pat arrived, shortly after Brooke woke up from his nap following the morning session of trach trials. Pat told me about it on the phone: he said he’d never seen an expression like it.

By this evening, Brooke and I have been enjoying a lavish Chinese dinner, take-out, a present from an old student of his who now lives in Washington DC, and a bottle of beer (Brooke’s first, another symptom of return to the world). But breathing is another matter again: now it’s the work of the vent, and life returns to hospital-normal. We’re still reading the hundred cards that came in to celebrate the virtual birthday—wonderful, absolutely wonderful—and it tempting to think that the Tinker Bell phenomenon has actually played a role.

There are still many more steps in vent-weaning to go. Brooke has been initiating his own breaths for quite some time and has been meeting the first goal: CPAP (continuous positive airway pressure) all through the day, though back on pressure support at night. The trick now is to strengthen the diaphragm. But there will be many many more trach mask trials, until he can do trach mask all day long, with CPAP at night. Then comes trach mask 24/7 for 10 days, and they take the vent out of the room (though, of course, this is a hospital, and it’ll be just down the hall). Somewhere in there comes a speaking valve, and full-time cuff deflation (when incidentally he can talk all the time), then a cap on the trach, then still more steps involving secretion control, and then the whole thing is done. This will take weeks and weeks, maybe months. And there still aren’t any guarantees. But it is looking better now, and easier (thank god) for him—it has been a very difficult business.

Brooke has done a lot of meditation over the years, meditation that focuses on breathing, but the experience of this morning was something that he never expected to attain. And in a hospital, at that, mostly paralyzed, with a respiratory therapist watching numbers on a monitor and bells going off everywhere. Maybe that’s the point—experiences like this come when you least expect them and in settings that would seem as unconducive as one could imagine. They’re something at which you can’t aim and which you can’t plan, but astonishing, ecstatic, when they happen.