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.


Michael said...

Brooke and Peggy:

As a Buddhist practitioner, and teacher, it is inspiring to see the profound comfort you experienced from the lama's visit. There is an old Zen saying: "Every day is a good day". Every day.



ed ranney said...

Hi Brooke and Peggy,

There's so much in this last posting to mull over, thank you, it is a gift, truly touching so many issues of consciousness and maintaining a meaningful presence in life. I had been discouraged that there hadn't been word from you, but clearly the wheels were more than turning, and you, the lama, and all, have given us this major slice of history, reflection, and insight which has such substance. I love the way your recounting of last six months leads us into such personal realms of understanding, and reaffirms the present moment for us as well as you. Wonderful work. I have just read, I think in a recent New Yorker article regarding development of children's brains, and self-discipline, a thought that compares this curious, complex development of the internet, and the interconnections it provides, to the complexity of the human brain, how so much is available, and can be processed from so many different sources and angles. Not unlike what you just mentioned, with the different input from so many individuals around the world, putting thoughts, concerns out, with no previous connection, except of course, that it would not happen without you, and your contributions to our own awarenesses, and growth...a wonderous thing.

Thinking of you Brooke, love and thanks from all in NM
big hug

Steve Adams said...

Dear Brooke,

I wish I could be with you this weekend, with Nick, visiting you. Mom had a high fever last Sunday and was expected to live only two days. We notified the funeral home. The family gathered. But she has rallied, and once again asks after you.

The account of the lama reminded me of Dave Rounds, who once told me about the aura radiating from a Buddhist monk who was pivotal in converting him to Buddhism in 1968. David has dedicated his life to translating Buddhist texts into english, and is editor of a religious journal. I will tell him about your blog.

I have been reading a biography of Ronald Knox. Clever fellow: taught at Shrewsbury, as did Charles Darwin. Neither stayed more than a year or two.

Much love to you and Peggy.


Lorraine Seal said...

Thank you, Brooke and Peggy, for this moving and insightful post. I can see now that the book is going to be remarkable.

You’ve opened up a number of avenues for discussion and triggered many memories and emotions. To begin, when I opened this page to read the post, I had been thinking about what to say in response to your previous post about the six-month anniversary of Brooke’s accident. You wrote, Peggy, that the short answer is that Brooke is alive and very grateful that he is. And I think this much longer post illuminates that gratitude beautifully.

I had been thinking about a similar response in my friend R, about whom I’ve written before. He surprised me one day a couple of months after his brain injury by saying, out of the blue, “Thank god I’m alive!” It was not the sentiment that one would expect to hear from a once independent and articulate man –- to an extreme -– now coping with dementia and living among others similarly disabled. In fact, his life was so apparently limited that many of his friends simply gave up, believing he would not wish to continue to live in the circumstances. Yet over the following months, he repeated, in one form or another, that assertion: “Thank god I’m alive!”

Among the things I learned from his odyssey and am now learning from yours has to do with our willingness to embrace life in whatever form chance or fate gives us. It turns on its head the belief that one would not want to live “like that.” We see now that it’s impossible to know how resilient and grateful for life we would be under drastically altered circumstances.

The tragedy consists not in the altered circumstances but in the inability of many to see across the divide to accept what is in the moment. That became a source of frustration for me as I saw how others’ blindness to the person who remained after my friend’s injury. Some expressed regret that he had been resuscitated at all, saying that he should not have lived. Indeed, those charged with making essential decisions were so sure that their friend would not want to live “like this” that they may have been unable to share in the exchange of compassion you describe.

It was, of course, difficult to perceive at times. Your injury has left you clear headed though immobile and wracked by muscle contractions and nerve pain. His left him confused and restless, generally unable to control his thoughts, memory and perception. His former fluency of language evaporated, so he expressed himself with difficulty. It seemed at times as though his mind contained a kaleidoscope of images that constantly shifted, breaking apart and reconfiguring memories of people and events, creating new narratives out of his past experiences. Because of that, one couldn’t be certain when he would try to physically escape from the danger he felt was imminent. To control that, he was sedated, which exaggerated the vacancy of his eyes and vagueness of his expression.

However, in spite of this, there shone through a sense of humour and compassion that seemed the distillation of humanity. Indeed, it’s possible to think that his humanity was more apparent during his dementia than it was when his mind was whole. For then, pride demanded of him that vulnerability be renounced at all cost. When he could no longer deny human vulnerability, he willingly accepted others’ compassion for him and demonstrated his compassion for others.

[end of first part]

Lorraine Seal said...

[continued from first part]

My friend, like you, had embraced Buddhism and prior to his dementia had often written to me that life is Dhukka – suffering. He struggled to reconcile the pain of his existence with compassionate detachment, an effort that resulted in frequent withdrawals into existential agony. Yet he could write dispassionately about it. As I sat with my mother in her protracted death struggle, he wrote me:

“I have no advice to give; no secrets to reveal other than this: Life, the Buddha tells us, is by its very nature pain incarnate, Dhukka. Now you are living out the pain and when you get a chance, perhaps you can somehow transcend it and find something, some wry truth, to hide away to a secret recess of your life; something which will somehow get you through the day.”

And there’s an intersection of what you’ve shared with us and the experiences I shared with him. We take from the pain what we can. We shape narratives that give sense to suffering. It may be compassion that draws us closer to others. It may be compassion for oneself as one comes to value strengths in ourselves we have disregarded before. My friend suffered greatly in his dementia, and I and his friends suffered to see him like that. Yet one narrative I cherish is that, painful as it was, the dementia peeled back his defenses so that he and others could experience vulnerability and expression of compassion within that had not been accessible before. He gave up a great deal, of course, in the process, and not all would call the exchange worthwhile. I choose to believe there was value in the experience that transcends the suffering.

For a brief period of my adult life, I was a practicing Catholic. The priest who received me into the church was a dear family friend, an Irishman with a depth of understanding not all priests share. He spoke simply, drawing on everyday language and experience to make his points. While he was instructing me, I objected to one of the prayers used in the rosary, “Hail, Holy Queen: To thee do we cry, poor banished children of Eve, to thee do we send up our sighs, mourning and weeping in this vale of tears.”

I couldn’t articulate my objection to the florid language, I suppose, but I did tell him that it wasn’t how I wanted to see life. “We should embrace joy, not dwell on the negative,” I told him, betraying my formation in Mormonism.

I can still hear his distinctive drawl as he said, “If you follow the postman around one day, you’ll find there’s an awful lot of trouble in his bag. Someone is sick, someone lost his job, someone else has died.”

As you can guess, I don’t these days turn to Catholicism and its promise of heaven for comfort, but his parable has stuck with me. Life comprises suffering as well as joy, and we must find a way to embrace that reality. And I agree with you, Brooke, that Buddhism offers a path to that end that is ultimately and fundamentally optimistic.

These days, joy is difficult for me to achieve; some days it’s all I can do to muster compassion for myself when I fail to meet the goals I’ve set out, when I allow to consider how swiftly my own time is running out. The morning I read your post, in fact, I was beating myself up for failing, again, to accomplish what I’d like. I drew some strength then from reading the reminder that we should live in the moment, not looking back, not anticipating, but being whole in the moment.

“Live each day like a little life,” my friend often told me. I don’t succeed at that, but it’s worth recalling.

Keep on keeping on, both of you.


Steve Adams said...

Dear Brooke,

I just (Tues, May 26) had a long conversation with Nick, who said he had a wonderful visit with you. Mom continues to do well.

More later, my very best, Steve

Steve Adams said...


I just noted the prayer to Mary mentioned by Lorraine: "to thee do we cry, poor banished children of eve". The story behind the author of the prayer is edifying. I only remember it in vague outline, but I believe he was a monk in a Swiss monastery in the 16th century. He had a very sunny disposition, was extremely bright, and an expert in the astronomical science of his day. He was also a gifted musician and was loved by all of his fellow monks. He was left at the monastery as an infant born without hands or feet and was a hunchback. His life was an extraordinary story of overcoming handicaps.


Brenda Cowley said...

Well, well, Brooke and Peggy...
I just finished up reading the latest blog and the following responses -- I wonder how many times on this blog I have resorted to the one word in the English language to sum up my feelings: Wow. My vocabulary may be limited, but my feelings and thoughts about this latest post are not.
I think it's possible that ten years or so from now, I will somehow think I was in the room when you received that visit. The description of the experience was so profoundly detailed and moving, that it is now MY experience -- if that makes sense -- and everyone's who is following this blog.

The questions that come to mind are too many to address -- (I have forgotten about Peggy's upbringing)-- having departed from my Nazarene Upbringing some years ago, I find myself in a sort of perpetual "search," -- accepting things that seem to work for me, discarding things if they don't. I, like Peggy struggle somewhat with "accepting Suffering" as a way of life, and at the same time understand the concept: Making the step to "Accept" my problem with anxiety and panic was a step I never thought I would willingly take -- but once I took it...once I accepted it as part of my life...it began to be less present. Or required less of my focus, I should say.

Suffice it to say, that every comment on this latest blog could probably go on for months. Because now -- NOW, my friends - people have even MORE to think about.

Thank you for continuing the narrative.

I love you both and know that while my theological and intellectual beliefs are all over the map - my utter belief in the Two of You has not once wavered.

Brenda Cowley

JanVan said...

This message is long overdue and directed to the Two of You. I thank Brenda Crowley for that perfect phrase. I too believe in the Two of You. Secretly, out here in the rural eastern part of North Carolina, I have a photo of the Two of You on the wall next to my office desk. In it Brooke is in bed with his contraptions looking angelically up at Peggy who in turn smiles down at Brooke. Until this latest post about the lama visit, when looked at it daily I always thought about the older post from Peggy in which she talked about how earlier the value of life was sort of measured in stuff, and then it was very much in travel experiences, and now it is in the presence of friends. (See, Peggy, you ARE a natural Buddhist.) I draw strength from that photo, and from your posts, and now there is this magnificent new one with the lessons from the lama. I mean "with" the lama. To coin a brand new phrase, it takes two to tango (I used to think it was "tangle," which is good, too), as the lama pointed out when he said it is Brooke's nature that allowed the experience with the lama to be as it was.

My heart is so full with what you write and imagining the Two of You and feeling so unimaginally greatful that you share yourselves with us.

Jan VanRiper

Sherri said...

Hi Brooke and Peggy,

Thank you for writing this. Your take on suffering--and the grace evidenced in it--is something I'll have to chew on for awhile. Of course, "grace" is a Christian word, something from the belief I cling to, but your description of the optimism of Buddhism has opened my eyes. I'm one of the hundreds (no, probably thousands) of students whose lives have been enriched by your mind, your words, your presence. And in this circumstance, you're teaching new things.

Thank you also for allowing the reporter and photographer to shadow your lives. I read the profile this morning and while I was deeply saddened to read about what happened and what you're going through, it was great to see your lovely face.

Sherri Vance