Saturday, May 30, 2009

News Flash: The Tribune's story

You wouldn’t ordinarily want a reporter and a news photographer hanging around in your personal life, especially in pretty difficult and intimate times, but that’s just what we’ve had: The Salt Lake Tribune’s award-winning religion reporter, Peggy Fletcher Stack, and the astonishingly gifted photographer Leah Hogsten. They’ve been following not just our lives, Brooke’s and mine, but also talking to our family members and friends, everyone around. They’ve hung around with me in the house (you can see an embarrassing picture of my rather messy study, though this won’t surprise many of you) and with Brooke in the hospital, both in the previous Rehab unit at the university and now in the long-term care facility at South Davis (you can see Brooke’s life, close up). And you can see some of the many nurses, aides, occupational, physical, and respiratory therapists who are with him every day.

The link below will get you to the story and the accompanying multimedia presentation Peggy and Leah have put together. Brooke and I have just been reading and watching it, and we agree: these pieces capture both what life has been like for the past six months (the brilliantly juxtaposed portraits of Brooke, suffering and smiling), and also what a profound challenge Brooke’s accident has posed to me and the work on end-of-life issues I’ve been doing throughout my whole academic career. We both think Peggy and Leah have got things exactly right, so we want you to know we think it’s been both a privilege and a pleasure to have them around.

There’s more to come: this only the first piece in a series of three. The second one, focusing especially on Brooke, is scheduled to appear in August, and the third will be a one-year followup, scheduled for November.

Here’s the site for the print story:

And for the multimedia presentation:

And there’s a button for commenting on the stories directly to the Trib, which, of course, we hope you’ll do.

Peggy (& Brooke)

Tuesday, May 19, 2009

Continuing the narrative: From the SICU to an important moment in the IMCU

(Written between April 16 and May 19, 2009)

This account, which follows the earlier account of Brooke’s stay in the SICU, the surgical intensive care unit where Brooke was first admitted after the accident, to the intermediate care unit, the IMCU. He writes:
The transition occurred very suddenly, at some time of the day that neither one of can remember: suddenly I was told that I was going to be moved. All this took place very rapidly. As I was wheeled upstairs from the 2nd floor, where the SICU is, to the 5th floor, where the IMCU is, it seemed very exciting to all of us. It’s a step-down unit, a step up so to speak, up out of the chaotic, acute world of the ICU, to a more sedate surrounding with less intensive monitoring, less intrusive care, an area that serves to ensure that patients are stable enough as they come out of the ICU to move on elsewhere—in my case, to Rehab. But just as I arrived at my new room at the IMCU, however, I coded: my heart stopped, and I was in full arrest.
Others will give an account of this episode. All I remember is that I simply lay on my bed, aware—because of the chaos of shouting around me—that something terrible was happening. Exactly what, I didn’t fully understand. I do remember faces and lots of movement of bodies. I remember in particular my son Michael shouting at Peggy, “Mom, you have to get out of here,” a command she did not appear to follow, since she seemed to stick with me through the whole episode. I don’t remember any pounding on my chest, just a haze of movement and then being wheeled quickly back to the SICU. Needless to say, when I slowly came to a state of full consciousness, I was shocked to discover that I was back where I had started, just a handful of minutes before, and that I would have to stay in the SICU for an even longer period of time, as it turned out, three or four days more. I’d like to be able to say I had an out-of-body experience or that I saw a light at the end of a long tunnel, or heard singing, or something to that effect, but actually the experience of coding out, while not an ordinary one, was certainly not transcendent and did not leave me feeling that I had a glimpse into another world.

The next day, I was told that the doctors had conferred with one another and had decided that they didn’t want any more episodes like this happening again, and that they would insert a pacemaker to regulate my heartbeat if it should fail again. The pacemaker has been a source of security ever since. There have been no further coding episodes in the past four and a half months. The rest of the ICU experience followed the pattern of what I’ve previously described, except that I got better and better at talking around my trach, and I got better and better at getting the nursing staff to tell me their stories, stories that have made my life in these hospital units infinitely richer.
Later, Liz Kuhlman told me that one of the things I seemed to have was a capacity for making others feel as if they belonged, as if they were really important. I was able, she said, to give them my full attention—aides, nurses, respiratory therapists, even the janitors if they were not too shy or overworked to stay around. Those words that Liz spoke to me then sunk deeply into my heart and their tone as well as their content has been something that has sustained me over this whole period.
Over time, I came to realize the nature of reciprocal relationships between patient and caregiver, the way in which the care you receive is somehow connected to what you are able to give to the person who is caring for you, especially an interest in their lives.

Three or four days passed before I was finally transported to the IMCU, expecting to be moved to Rehab within a day or two. As it turned out, I spent about a week in the IMCU waiting for space to open up in Rehab. Nearly every day we would be informed that it would be only a few days before I would be transported, but day followed day until I thought I would stay in the IMCU indefinitely.

Four things stand out in my memory about the IMCU, a chapter of this experience: the visit of a Tibetan lama, whom I knew only slightly from four visits to his temple, at the invitation of Joe Metz; Peggy’s spending three or four nights on a hideabed in my room; emotionally intense relationships with various nurses and aides; and finally some profound conversations I had with my stepson Michael during one night in the IMCU.

The lama swept into my room one afternoon in his full robes: deep maroon, with saffron—the colors of Tibetan Buddhism. He is an imposing figure—tall, erect, with luminous brown skin and a way of moving that must arrest the attention of anyone who encounters him. In the room at that point were three or four white-coated doctors, including our close friend Kirtly Jones, discussing medical matters, but they stopped at once, struck by the enormous presence of the lama. At no other moment in my life have I seen the contrast between western medical science and “eastern” spiritual tradition more vividly embodied, as in the contrast between the three or four sober-looking doctors and this towering figure.
Lama Thupten Dorje Gyaltsen was originally named Jerry Gardner, and still uses this name in his professional life. He is from New York; in his day job he teaches movement in the Theater Department at the University of Utah. The rest of the time he presides over an authentic Tibetan Buddhist temple, located in a former LDS wardhouse on 3rd West, between 7th and 8th South in Salt Lake City, the Urgyen Samten Ling Gonpa. Lama Thupten studied at Chöling Samten in India, and at Nagi Gompa in Nepal, over a period of about thirty-seven years. In Tibetan Buddhism, one’s lineage is central: Lama Thupten’s lineage is of the Nyingma School, in the Longchen Nyingthig lineage, and his teachers were Tulku Urgyen Rinpoche and Khenpo Konchok Monlam Rinpoche. But as he swept into room, even without my knowing his lineage, I could feel the silence his presence produced in those in the room, especially the white-coated doctors: silence, astonishment, awe. Lama Thupten was absolutely polite and made it clear that he did not want to disturb what was going on medically, but it was already profoundly disturbed: it was so to speak overshadowed, utterly overwhelmed by the enormous presence of the lama and the immensity of the tradition he was bringing with him. Medical science, of which I’d been the recipient of so much and which had saved my life more than once, seemed almost shriveled, dwarfed by his presence and the resonant spirituality of his being; it seemed as deep and luminous as the rich deep-red color of his robes.
The doctors left, the nurse left, Peggy left; the lama was with me alone in the room. He filled every crevice of it. He chanted in Tibetan for five huge minutes—it was almost as if I could understand the language of his chant, at least the rhythm of it, which came through to me in an almost visceral way. Then he leaned over from the chair in which he was sitting and put his forehead on mine; he chanted more; it was as if his brain and mine connected on some deep level. Then he began to speak in English, in words that seemed one with the ancient universal wisdom they expressed.
The first thing he did was to sweep his hand away from himself in a consummately dismissive gesture, saying at the same time, and to my surprise, “the body is nothing; it is ephemeral; the mind is everything.” I did not understand this at first and I was shocked by this combination of gesture and the words that came from the lama’s mouth at the same time, as he gave his dismissive gesture.
Only later did I understand fully what the lama had said at that moment, when at South Davis I saw my body in a mirror for the time, my whole body, as I was being wheeled into the shower. I thought to myself then ‘I could be very depressed by what I see—a body that has become extremely emaciated by long months of inactivity, a body I had been so proud of, even in my late 60s.’ Suddenly I told myself that I could either be depressed or I could celebrate the fact within myself that I still had a magnificent and ever-expanding mind. The lama’s words at that moment came back to me, came back with their full force, and I understood them for the first time, and my depression and my potential depression lifted.

The next moment that stands out in the lama’s lesson is that he advised me not to ask why my accident had occurred; rather, he said, just accept the fact that it has occurred and move on from there into the present moment, however painful this moment might be. It is what it is, he said. This was the second part of his lesson: that one should live in the moment, not look back to what has been in the past, or ahead to what might be in the future; the past and the future have no reality, and the only thing that is real is right now. In the context of this spinal cord injury and the paralysis that it has produced, this lesson is of particularly acute importance: it means don’t look back to your previous robust and active life and grieve over the things you can no longer do, and don’t look forward to an unknown, changed and potentially limited future and consume oneself with worry about what the future might bring. Regret has no place; fear of the future has no place either.

The third part of his message was that my accident and my suffering has and will produce compassion, even deep happiness, in many many people who know me and even those who do not. If the immense outpouring of love and new bonds of friendship are any indication of this, the lama’s words have turned out to be true. Members of our immediate family have grown to know one another and to love one another in ways that would have been inconceivable had this seeming disaster not occurred; friends who have never really known one another have established bonds of affection that again have produced a deeper compassion, and out of that compassion has arisen I believe a kind of happiness beyond the way that term is usually used. Friends who were casual or social acquaintances have become friends in a much deeper way--dear, dear friends--and they have made real sacrifices in order to be with me and help me. Strangely, a paradoxical sort of happiness has grown out of this; it makes people happy to achieve these connections even in the face of what seems to be tragedy, bonds that are deeper than the usual superficial social links that people develop. As this blog attests, people from far-flung places, not just Salt Lake, have come to meet one another, read one another’s words, and establish a new kind of community, one based in part on a common response to one person’s plight. For example, there were multiple comments on a recent blog entry, the one about regression, including one from Washington DC, one from Virginia, one from New Mexico, one from Madison, Wisconsin, one from Ireland, and one from somebody we can’t identify from their blogname, somewhere out there in the world. These people don’t know each other, but they are reading what each other wrote, forming a kind of community. Of course modern technology aids in this, but there’s something more here than the ordinary listserve or chatroom, more than twitters or any of the other new stuff that comes along. In many of the blog entries people have contributed, the sense of self-disclosure, self-revelation, and connection-making is astonishing.

One of the essential foundational tenets of Buddhism is that all of human life involves suffering; it also involves the compassion that arises from it. We will all get sick, grieve, die; all of us have and will suffer. The essential role of empathic participation in suffering is a deep Buddhist insight, as it is in many religions, but broader in scope than that of other traditions. Christianity invites you to participate in Jesus’ suffering and recognize one’s culpability for it; Buddhism’s notion of suffering is far more generalized, in that suffering characterizes all of human life and is seen as its basic mode, not simply the one signal sacrifice made by one extraordinary man. One of the major lessons that Brooke’s experience is bringing to us is to open our eyes to the suffering of people all around us: a woman has lost her grown son; a husband has lost his wife; an old friend has spent five years battling a rare cancer only to have a common form crop up as well; someone has lost a child to heart disease; two friends have been diagnosed with breast cancer; someone has had something like twenty-three operations on one eye; someone’s wife has profound dementia, somebody’s brother-in-law has cancer; somebody’s brother was killed in a motorcycle accident; and so many more it is impossible to catalogue them all.

Thinking of Buddhism as a tradition that uniquely captures human experience as suffering might seem to shortchange Christianity. After all, Jesus’s suffering on the cross was suffering for all humanity, not just himself. But because we were both exposed to the Christian tradition at much earlier ages, the new perceptions that Buddhism brings have been particularly meaningful to us. Brooke has been interested in Buddhist meditative practice and sometimes calls himself a Buddhist; Peggy hasn’t been and doesn’t think of herself this way (she was brought up as a Quaker), though Brooke insists that she’s a “natural Buddhist.” Whether it’s a matter of practice or not, our ways of responding to what might seem to be tragedy have both been very much shaped by Buddhism.

Brooke was out of town when Peggy heard the Dalai Lama speak years ago: his central message was that life is suffering. She says, I can remember my inner sense of disagreement when I heard him say that. My own perception of life, she says, isn’t that at all, life is a pleasure, not suffering. My, indeed our life, Brooke’s and mine together, still isn’t all suffering. But we do realize how much suffering one overlooks—we look away from it, we fail to see it, we shield ourselves from people who are wounded or maimed or diseased, or different in some way; we marginalize them or even worse, barely see them at all. This changes when you spend a lot of time in hospitals, and see both the suffering undergone by numerous patients, some of whom are much worse off than Brooke, and also the extraordinary love and care given by nurses and aides who work in the hospitals, but many of whom have also had experiences of real and sustained pain.

Brooke’s accident is not unique in producing suffering. It isn’t really possible to compare the kinds of physical suffering he’s been through and still has some of (though less) with the kinds of physical suffering others have endured, not to mention the emotional suffering that outweighs it, but what is important to realize, and what we have failed to recognize for most of our lives, is the huge range of pain and anguish and suffering that is around us all the time. Of course, neither the Buddha nor the Dalai Lama think that life is unmitigated suffering, but they offer practice, both meditation and acts of compassion, as a way out of suffering; this can give true happiness and is possible now, not just in some afterlife that may not even be attainable, as some versions of Christianity seem to suggest. Brooke says he thinks Buddhism can be the most optimistic of all the world’s major religions, if it can even be categorized as a religion in the conventional theistic sense, and attributes some of his own optimism, not only with respect to his injury but in other areas of his life like teaching, to augmenting the Catholicism he was raised with with these new Buddhist insights and practices.

After the lama left Brooke’s room, he met with Peggy in a little conference room down the hall, a bare room with a small conference table and a few schoolroom chairs. He described for her the main points he had made in his hour alone with Brooke, and she took them down in detail on her laptop. She volunteered to send the lama her text—a discussion of religious elements in Brooke’s situation but focusing especially on the lama’s lesson--but in trying to post this little essay on the blog lost it. Lost it! But the lesson from the lama was fresh enough so that she could say to herself, oh well, it doesn’t matter that it’s gone, it’s simply gone, no need to anguish about it, to give it the illusory permanence that recovering it and posting it would seem to give it. Just understand: it’s gone.
(But here we are, trying to recreate it, five months later.)

Our friend Kirtly Jones, who is one of the white-coated doctors in appearance but not so constrained in spirit, stayed a few moments with Brooke after Peggy had left to escort the lama out. Kirtly said she’d been overwhelmed by the presence of the lama in that setting, and that in fact she had retreated to a corner of the room away from anybody’s sight and cried.

That was in December. Now it is May. After we’d put together this recollected and remembered account of the lama’s first visit, we e-mailed it to him to make sure we’d gotten the facts straight. Then he called on the phone, from the East Coast, and Peggy answered. He said, more or less: “What Brooke and you have written is one perception of that moment. It’s an important perception, and I wouldn’t change anything. But there’s another perception of that moment as well; we have to be open to the dance among perceptions. This other perception is that we are the ones who are blessed by Brooke’s presence, and his allowing us to engage in inner reflection; it’s he who has strength, compassion, a luminous nature. His light; his smile; it’s he who filled the room; in nonmovement there is great movement.” And in closing, thinking again about the dance of perceptions, he called himself a “spiritual fool” (a wonderful allusion for a professor of theatre, clearly familiar with Shakespeare), who has come to “bring some laughter” as well as insight into the Buddha nature.

Thursday, May 14, 2009


Somebody reminded me this morning: it's six months to the day since Brooke's accident. And then somebody this evening asked me, how's your husband? The short answer is: he's still in the hospital, still on a ventilator, still nearly totally paralyzed. But the long answer (and it is a much longer answer) is that he's still himself and still deeply happy to be alive.

Tuesday, May 5, 2009

On the "Bipolar" Character of the Days

(Written by Brooke and Peggy together)

Brooke’s been at South Davis since the 3rd of March, two months now. All the days seem the same, with the seemingly tiniest variations: they all involve turning every 2 hours, straight-cathing 5 times as day, 3 doses of medications (with the sleeping pill sometimes a bit delayed), one suppository and one event of bowel care, 4 episodes of CoughAssist respiratory hygiene, and 2 periods of vent-free breathing exercise. Mondays Wednesdays Fridays, add a shower. Tuesdays and Thursday, physical therapy in the bed; MWF in the chair or on the mats. The doctor is supposed to come on Tuesdays and Thursdays, but he’s more free-spirited than that, and could turn up at almost any hour. The nurses and the aides and the lady who takes the food orders and the folks who collect the trash (at least 4 times a day) all come in and out of the room with predictable frequency.
This pattern might seem monotonous. But there are rhythms in it that might not be apparent to outside observers, rhythms of good days and bad days, cycling along behind each other in a larger forward movement in the process of weaning off the vent and seeking regained function and mobility. The good days are days in which Brooke extends the amount of time he can breathe off the vent: two weeks ago it was almost an hour, then last week an hour and fifteen minutes; today he hit a new record for a single session: 90 minutes in a row, followed by another 30 minutes in the late afternoon, for a total vent-free time of two hours today. This is splendid! But the pattern of progress plays off against frequent failures (though one never hears this word spoken here), when the most he can manage is 30 minutes, 20 minutes, sometimes just 7 or 5 or maybe none at all. The good days are exhiliarating but the bad days, psychologically speaking at any rate, feel he says much like the depressions he used to suffer from for years. Physically these bad days are often characterized by terrible spasms, especially over the last several weeks the severe, vise-like spasms that grip him around the chest, plus a sense of physical exhaustion that is difficult to bear over the course of a day. Of course, the physical and the mental distress are inseparable from one another, and when one of these days occurs it is very hard to hold on to the knowledge that a bad day like this will be followed by a good day, in which energy returns and the world looks beautiful and hopeful. Others have told us about this phenomenon, most notably Brooke’s mentor and friend Dale Hull, but no matter how many times advice is given it never mitigates the enervating feelings created by the spasms and the terrible chest muscle contractions that make him almost rigid, like a board. Depression always accompanies these physical symptoms.
In an earlier entry on this blog, Brooke said, I don’t feel depression, and I can’t afford to be depressed. But the pattern that has emerged over the past two months has made me modify my over-confident assertion. Just the same, I think the fact that I now experience depression is in a way a kind of gain: then, it was true, when my sheer survival was less certain and nothing at all could be predicted about my future, I really couldn’t afford to be depressed; now, as my physical condition is more stable and I have some return of sensation and movement, I am beginning to be able to afford to be depressed. It’s a biological sort of depression associated with spasms and pain, not so much anxiety about the future or grief over the past, and as I said it comes in rhythm patterns—good days, bad days, good days again. But now it is possible to recognize depression, and while I am not so strong as to be able to embrace it, at least I can look it in the face. It’s here, no doubt about it; but so are the good days too.
In the bipolar disorder that I’ve suffered from for about fifty years of my life (now dramatically reduced by wonderful help in trying to understand its developmental roots and also by great psychotherapeutic drugs), depression lasted months, followed by mania that lasted about the same amount of time, but was always accompanied by the gnawing feeling that there would be a terrible payback once the mania disappeared. Here, the pattern is on an almost day-to-day basis, and the days of this physical and mental depletion are the result of exhaustion from the hard work of the day before: breathing, having one’s limbs manipulated, standing at a 30 degree angle on a tilt table in order to strengthen his bones and his cardiovascular function, and so on. You could say that there is progress in bipolar disorder if one decides to learn from it and to make something out of it; but here, progress is much more palpable. The goal is to wean from the vent, and every day—at least, every other day, every alternating day, brings us closer to this goal.
Peggy and I sat on the little balcony of this hospital this evening, I in my wheelchair and she feeding me Mexican food, washed down with beer, to celebrate Cinco de Mayo. The balcony faces west, looking out over the Great Salt Lake and the island in the middle of it, Antelope Island. The sun lowered gradually, reflected so brightly in the shallow waters of the lake that it seemed to make a second sun; it tinged little clouds with luminous edges, and after it sank behind a large dark cloud for some minutes, it reappeared just above the ridgeline of Antelope Island, glowing bright yellow-orange, before it disappeared for good. That ridgeline is one where we have hiked often, one of our favorites hikes; but it’s not missing this that’s the focus of depression but only the physiological bipolarity of these days.