Cemetery

 

            In the South Davis transport van on the way to University Hospital two weeks ago, when Brooke was on his way to have the procedure for implanting the diaphragm pacer, he was driven past familiar landmarks in the Avenues, where we live.  His thought unaccountably rambled in the direction of the Salt Lake City cemetery, which is only a block away from our house, and this led him to reflect for the first time in any serious way since the accident on what to do with his remains.   We’d talked about our preferences concerning body disposal from time to time beginning many years ago, when it was our habit to go walking in the graveyard—quiet, green, peaceful, and over the years increasingly familiar. We’d walk around the graveyard after dinner in the summer, when it was still light, often with the kids, teaching them addition and subtraction by figuring out how old the deceased had been.  We’d walk from one end of the graveyard to the other by various routes, and we’d come to know some of the notable graves, like  John Taylor, who was President of the LDS Church before it renounced polygamy-- his multiple wives are buried there too, including twins.  There’s Hrini Whaanga, a Maori chieftain converted to Mormonism in the 19^th century.  And there’s the one we called Felix Rossiter, a spectre supposed to scare the kids (it didn’t).   Even after we discovered the hiking trails in the foothills and so didn’t walk in the graveyard much anymore, we’d still walk there when we had various illnesses—a cold, a sprained ankle, or maybe just a night without much sleep.    In those early days, Peggy once even inquired into grave plots, with no particular seriousness, just because we were so familiar with the graveyard, it seemed like part of home. Just the same, we’d mostly assumed we’d want cremation and the scattering of ashes in some significant natural place.

            What led up to Brooke’s reflections on burial was that Peggy had been walking there while nursing her little pneumonia recently, and she had told him about her new sense of the suffering that would have preceded many of the deaths represented there.    I started to realize, Brooke said, that I hadn’t given much thought to what I’d want done with my body, not for years, which is totally irresponsible.  I’d sort of always assumed that I’d have my ashes scattered by loyal friends from the top of Deseret Peak, in the Stansbury Mountains, or Mt. Ellen in the Henrys, or some other often-hiked, beloved mountain.  Then more recently, we talked about the magical hollow on our usual short hiking route in the foothills above Terrace Hills Drive, five minutes from our house but completely out of sight of civilization.  It’s just above the spot in City Creek Canyon where Brooke’s bicycle accident occurred.

Everyone must think these thoughts but it’s a little like sex, Brooke says, no one talks about it.  Then suddenly, riding in the van, I just had this idea, clear, for the first time, that I wanted my body to be buried and wanted a headstone to be over it, and if I’m not mistaken that was about the same time that you started thinking about this too.  I mentioned it to you, Peggy, and you said, well I’ve been reflecting on the same thing, since I’ve been taking these walks in the graveyard while I have pneumonia; I get out of breath too easily to take a real hike.  When I shared my thoughts with you, Brooke says, saying I thought you’d be horrified, you said instead that you’d had some of the same thoughts yourself.

            I thought about a headstone, Brooke said.  One standing up, not just flat in the ground, with my name, my dates, and a little epitaph from Keats or Wordsworth or I think Henry Adams.   Something that would capture the sense of teaching, perhaps the most essential element of my life.   And Peggy said, yes, she’d been thinking about it too, she’s always assumed she’d want cremation and perhaps still does, but there’s something about an old stone in a old cemetery that has a kind of permanence—not permanent permanence, but still substantial—that is somehow comforting.

            We confessed these things to each other, many days after the surgery was completed and very successfully so.   Peggy fished the cemetery’s price list off the web—remarkably modest, at least for residents.  And then as she was driving to the university campus and was going past the gravestone shop that’s on the way—something we’d each driven past nearly daily for thirty years or so—she saw an OPEN sign, stopped and went in.

            It’s like stepping back maybe fifty years, a small shop with old wooden cabinets.  The man behind the counter could clearly detect that this prospective customer wasn’t “in need”; after all, she was smiling, even lighthearted.  “We’ve lived in the neighborhood for thirty years,” she said, “I thought it was time to stop in.  There’s no urgency about this.”

            “We’ve been here one hundred and twenty-eight years,” the proprietor replied, and that seemed just fine, a place that seemed to as if it couldn’t have changed much in that time, exactly the kind of place you’d trust for something like this. 

 

            We’ve been having debates about whether these reflections on the disposal of one’s remains are too personal for the blog.  Talking about burial and cremation and remains and death is somehow unseemly, not polite, not proper fare for public consumption.  Besides, there seems to be no immediate need: Brooke’s health has been improving over the last year and getting off the vent will improve it still further.  And  Peggy recovered easily from her pneumonia, not a serious case after all—but always sobering in an older person.  Death could of course happen to either of us, any time, with or without much warning.  But what we’d like to show is how easy this was to think about, how natural, even though you’d think it would be most threatening of all.  After all, Brooke has hovered near death several times since his accident; he has already outlived the expected lifespan after spinal cord injury like his (60% mortality in the first year, we were flatly told, right up front), and our intimates keep subtly reminding us of the risks.  We know the risks; but these reflections don’t seem to be related to them.

 

Thinking about this, Brooke says, has given me a great deal of peace.  For the first time I’ve thought about what a grave marker gives other people, especially one with an epitaph like the one I’m thinking about at the moment, a line from Henry Adams, about teaching, which I think of as my life, A teacher affects eternity; he can never tell where his influence stops.  Having a gravestone with an epitaph can be sort of egocentric, but it gives others a chance to remember in a kind of creative way, to mourn, but to mourn usefully, in a positive way, to reintegrate one’s life.  Somebody might just stumble across the grave without knowing who this person was, but be moved by the epitaph, just the way we’ve come across graves when we walk in the cemetery that really move us—like John Taylor or Hrini Whaanga, though not the imaginary Felix Rossiter.

What name? Roger Brooke Hopkins, or more accurately Roger Brooke Hopkins III, or more simply Brooke Hopkins?  The first one creates an honor to my father, and creates some continuity.  The second seems grandiose, even if it is my actual name, but ever since my college days I haven’t been able to tolerate those numbers tacked on behind.  The third, simple one is sort of defiant, as if you could invent yourself by chopping off part of your father’s name. 

Names are a problem for Peggy, too.  What name?  Margaret Pabst Battin?  Margaret ("Peggy") Battin?  Peggy Hopkins? 

But whatever the name, there have to be dates too.   For Brooke:   Born: Baltimore, March 25, 1942.   Died: Salt Lake City,  then the date (which each of us will have but none of us knows). Then an epigraph, for family members and friends to ponder, for strangers to discover.  Just thinking about it makes me feel very peaceful.    It’s a kind of alternative to thinking about an afterlife; this is one way in which one’s presence continues. 

 

Even later, we were talking about it late at night.    

Brooke: (on the phone)  I like the idea of lying together.  (Peggy cries and cries.)

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The Diaphragm in Action

            By now most of you know in theory something about the diaphragmatic pacer that Brooke had implanted April 12, and something about the nature of the laparascopic procedure and why Brooke was such a good candidate for this pacer—and, of course, about the fact that it was the first implantation in Utah of a motor point diaphragm pacer, even though, as has been pointed out, phrenic nerve pacers and other technologies have been in use here for some twenty years.   This pacer is a great thing, and Brooke is enormously lucky to get it.   But now let’s talk a little about his actual experiences of breathing with the pacer—it’s not exactly what we expected.

            For one thing, there was the subconscious and utterly unrealistic expectation that the moment the pacer was plugged in, Brooke would be freed from the vent immediately.   Intellectually we knew that wasn’t so, and that the pacer would be serving to strengthen the diaphragm, a longer process.  But as always, hopes and desires outrun rational considerations. 

The first moments on the pacer, the afternoon after the surgery, were something of a shock—literally, indeed.  We could see the abdomen move-- amazingly exciting--when the pacer delivered a tiny current to the electrodes implanted on the underside of each half of the diaphragm. With the initial pacing there’s some expectable pain, felt not just in the diaphragm but also in the shoulders.   Brooke joked that it was like being in a prison in Argentina during the reign of the generals; somebody else joked about the technology of tazers.  In fact, the shock at its highest setting is no stronger than a carpet shock, said the surgeon from Cleveland, but it isn’t set anywhere near that high now.

I’ve settled into a kind of rhythm, Brooke says, but what surprises me is that it looks like it’s going to be a long time before the diaphragm is strengthened enough so that I can get off the ventilator.  I can barely speak through the Passey-Muir speaking valve; I feel like I’m partly starting over, though it’s different from starting with the trach mask.  If I relax, I can do 45 minutes without any trouble, but just the same it seems like it’s going to be a long time before the much-anticipated freedom from the ventilator and clearly articulated, normal-volume speaking.    It was only in the last session today that I totally relaxed and realized that I could go on beyond the allotted 45 minutes; nevertheless, the verdict is still out about how long this will still take.

No one here knows.  The doctor doesn’t know; the head respiratory therapist doesn’t know; we are all in uncharted territory, at least locally (though there’ve been 350 previous implants of this pacer around the globe).  Brooke says, I feel as if I’m the center of this uncharted territory in which explorers are tracking around, looking for clues about what will happen, a little like looking for polar bear tracks in the frozen tundra.  We’re all in this together, and all we have is the phenomenology of breathing.  Everyone here is involved in an experiment.  Sure, Dr. Onders tells us it’s all easy, but perhaps we should listen:  Onders after all developed this; and he’s the one with the most experience in implanting and using it.

 

What I think will be most difficult in this whole process is learning how to coordinate my speaking voice with the rhythm of the pacer—that, and eating while on the pacer remain still to be achieved.

 

 

 

Here’s what a session is like.  There’s an initial shock in the abdomen, and immediate pain felt in the shoulders, though not severe.  Gradually the shocks, the electrical pulses, become almost imperceptible, and soon after the beginning of the session I’m comfortable letting the pacer breathe for me--14 jolts per minute, 14 inhalations and exhalations.

   Up to the last session today, however, I’ve been unable to hold back my anxiety, and by halfway through I’ve felt I had to breathe through my mouth—this actually made the experience more exhausting.  In any case, in most of the sessions these shocks to the abdomen are hardly felt at all, especially if I’m listening to the Goldberg Variations played on the guitar.   This afternoon I was even able to settle into a 40 minute session with almost no anxiety, letting the pacer breathe for me for almost the entire session, and I felt I could have gone on much longer than the 45 minutes currently allotted by the doctor as the maximum I should go at this point. (Ed.’s note: it isn’t that the pacer is breathing for him; it’s that he’s breathing “normally” at a rhythm and intensity set by the pacer.)   This is a very hopeful sign, but we’re still all in exploratory mode here.

Now I’m dictating this silently while actually on the pacer.  There’s a lot going on:  the furniture in my room has been moved around; I’ve just been cathed; I’m getting trach care and the inner cannula changed, and the respiratory therapist has just plugged in the pacer.  A pair of OT/PT therapists are on their way here.  This is a lot to digest in one moment, but fortunately the Goldberg Variations are playing in the background and I have a new, clearer view out the window.   I’ve been looking at a poster made from time-elapse photograph made by my niece; and now I’m really talking while on the pacer for the first time, so I can tell you what it’s like to have all my familiar stuff in the room moved around.   It’s taking some pretty deep breaths to get words out—Wow! Wow! Wow!  Ah! Progress! Om—but my voice is rather crackly.  Does it sound like my regular voice? (not exactly, but getting better by the moment).   I can feel a little pain in my shoulders, not more, just the same, not too much, but the talking is the big thing.  And just now the phone has run, via skype, and we’re having a phone conversation.  At noon Brooke couldn’t talk while on the pacer, but now he can, all the way to Seattle.  So here is it from ringside, in real time—another step on the way.   It’s the diaphragm, in action.

 

Post-Post-Op

 

            In the opening pages of Proust’s Remembrance of Things Past, the young Marcel describes waking up in a series of different rooms from the one he is used to sleeping in,  trying to fit together the objects which seem so strange to him into something he can comprehend.  That is what it was like for Brooke when he woke in the middle of the night in his hospital room after his operation, having slept for 13 months in a very different room at South Davis, one that we described in a blog not long ago.  The hospital room in the medical intensive care unit here at University Hospital seems utterly bizarre to him in the middle of the night, he says: a television attached high on the wall stares down like a gigantic surveillance camera, and the room is illuminated in a way completely different from his usual room: light filters in through blinds at the nurses’ station..  The sounds are different too: the alarms on the heaters in the ventilators, for instance, beep at South Davis, but here are set to make a kind of jingle, as if a malfunction should be amusing.   This room is much smaller, a kind of cube, but it has more in the way of medical supplies—not unexpected for a room in an intensive care unit, rather than a skilled nursing facility.  There’s a window to the outside, but it faces onto a blank wall; there’s no view, even though we’re on the fourth floor, except a tiny fragment of sky.  There are various signs: “Today: April 14, 2010” (though it was off by a day until Peggy changed it); “Frequent Oral Care Is Important” (with an indecipherable picture of an open mouth, perhaps with a cracked tooth, and with the oral-care policies in both English and Spanish); then there’s a high, empty shelf used for stacking pillows; and a magic-marker board with the date, the name of the nurse (as if Brooke would forget), the aide, even the housekeeper—names which are erased and changed every shift.  There’s a red plastic receptacle for sharps and a dispenser for gloves, blue ones in three sizes.  There’s a picture of a waterfall, but it’s hung so high on the wall that you can’t quite see any of the details, except the heavy fake-Spanish frame.  On the other side there’s the window that looks out through blinds to the nurses’ station.  Behind, there’s a wall with various apparatuses, which because Brooke hasn’t been out of bed since he’s been here he hasn’t seen directly, but which he can see reflected in the surface of the television screen: the vital-signs monitor displaying his heart rate, his respirations, his oxygen-saturation levels; panels with more equipment inside; the ventilator itself; and at the bottom of the screen his own face with the trach hoses at his throat.  Since the television screen is not flat but curved, everything reflected in it is distorted. 

 

            We are writing this at one of the few quiet moments in this room. During the days, it’s almost incessantly filled with people: nurses, aides, respiratory therapists, doing cathing, suctioning, turning, changing sheets, giving cough assist, and presiding over the controls for the newly-implanted diaphragmatic pacer.  Then there are the doctors, medical students, and other curious onlookers among the medical personnel interested in this new medical device, constantly pulling up Brooke’s gown to examine his incisions—(since the implantation was done laparscopically, there’s not much to see in the way of incisions except small bits of tape covering the four poke-holes for the electrodes) and especially the port where the connecting wires come out from his chest.  This is all there is to see of it, except for the external battery pack that gets plugged into the port and the slight jump in his abdomen when it fires each new breath; just the same, the medical personnel all seem very impressed by it.  They call him things like “hero” and “champ,” and tell him that he has made medical history in Utah. 

           

Unlike Brooke’s room in South Davis, where he’s spent over 13 months, this is a room you could easily go crazy in, he says, after about a week.  It’s better than many, many hospital rooms, and far more luxurious and well-equipped than hospital rooms in many countries around the world, and the nurses and aides and therapists are uniformly wonderful, but with the blank curved mirror of the TV staring down at him—which, after all, he can’t move to avoid; he can only stare straight at it—he thinks he could last maybe two more days before they’d need to ship him to the psych unit.

      --except that the prognosis for getting off the vent is very, very good, and that makes everything alright. Tomorrow, it’s back to South Davis for the next stages of vent-weaning, starting as he already has with 20 minutes on the pacer out of every two hours, and working up from there.   Sound familiar?  There's clearly more work for Brooke to do. 

 

From the Salt Lake Tribune: Breathing easier, aiming higher

Brooke Hopkins: Breathing easier, aiming higher

Implant » Historic surgery gives paralyzed former U. professor new hope.

By Peggy Fletcher Stack

The Salt Lake Tribune

Updated: 04/12/2010 08:13:59 PM MDT

Related

• Brooke Hopkins: Learning to live again
• Nov 13:
• Brooke Hopkins: A year after paralyzing accident, setbacks set in
• Sep 4:
• Learning to live again: Brooke Hopkins struggles through rehab after bicycling accident
• Learning to live again: How a new device may help Brooke breathe
• Jun 2:
• Tragic metamorphosis: Ethical debates turn personal for U. professor

Brooke Hopkins got a new way to breathe Monday, when doctors at University Hospital implanted a device that will rhythmically stimulate his diaphragm.

The retired University of Utah English professor, paralyzed in November 2008 after a bike accident, was the first patient to have the surgery in the Beehive State.

And the results delighted doctors.

"It's slick," exulted Daniel Vargo, the U. surgeon who implanted the diaphragmatic pacemaker. "You just fire it up and it works."

This has been a long time coming for Hopkins, who has been working strenuously for more than a year to build up his ability to breathe off a respirator. When he first arrived at South Davis Community Hospital in March 2009, the

spinal cord patient could barely breathe for 15 or 20 minutes on his own. Mustering all his physical and mental energy, Hopkins pushed himself for longer periods each week. He started to visualize his diaphragm and what inhaling and exhaling looked like.

During his first breathing breakthrough last April, Hopkins began to feel that "his breathing was not only stronger, but that every breath had become a joy," he wrote on a joint blog with his wife, nationally recognized ethicist Peggy Battin. "For the first time in his life he experienced what he had always been looking for in Buddhist meditation but had never actually found: the full life of breath."

He continued improving -- to one hour, two, three. By this year, he could sometimes spend up to seven hours a day off the respirator.

But, inevitably, there were setbacks.

From December through February, Hopkins suffered several infections that kept him bed-bound and inert. He grew frustrated and occasionally despaired that he never would be able to breathe on his own.

Before him always, though, loomed the prospect of the diaphragm pacer. No doctor in Utah was yet trained to implant it, and it wasn't certain that insurance would cover it. But it did hold out hope.

About the time of his 68th birthday last month, all the approvals and preparations were in place.

Raymond Onders, the Cleveland surgeon who pioneered the device, agreed to come to the Beehive State to oversee the first implantation, and the insurance company approved it.

Finally, the elusive dream Hopkins barely had hoped would materialize became reality.

At 9:30 a.m., he arrived at the U. from the Bountiful rehab facility, upbeat and excited.

"It's great to be here and doing something new," he said, while being prepped for surgery.

With Battin's help, he showed off some of his latest improvements -- separately lifting his left and right hand, a feat he couldn't do six months ago but which took every muscle to accomplish. The return of some sensation to his arms and legs has buoyed Hopkins, too.

"Optimism is central to his care," Battin said. "And I am feeling extraordinarily optimistic."

So were the doctors.

After the hour-and-a-half operation, Onders grinned at his patient and said, "You've got a great-looking diaphragm."

And, he added, nodding at Vargo, "you've got a great team of doctors here."

These were clearly moments of triumph for the amiable surgeon from Cleveland.

Onders helped launch the pacer, implanting the second one ever produced in Christopher "Superman" Reeve, who was paralyzed in a horseback riding accident, in 2003. Reeve died a year later of infection, but not because of the device's failure.

Four years ago, Roy resident Braden Howe flew to Cleveland to get his own diaphragm pacer as part of a clinical trial. Howe was in a bike-auto accident as a 13-year-old in 1996 and was on a respirator until the surgery. With the pacer, he was able to go off the ventilator for about 10 hours a day and completed his undergraduate business degree from Weber State University in Ogden.

In 2008, the Food and Drug Administration approved the diaphragm pacer -- manufactured by Synapse Biomedical Inc. in Oberlin, Ohio -- and, since then, Onders has implanted it in about 350 patients worldwide. Now 25 leading medical centers have the go-ahead to offer this treatment.

Onders believes this tool could transform the care for those who suffer spinal cord injuries. He has begun to put it in patients within a week of their accident, avoiding any long-term respirator dependence. It may have other uses in the future, particularly to aid patients suffering from ALS (commonly known as Lou Gehrig's disease) when their lungs stop working.

"It is healthier, safer and more natural than the ventilator," Onders said. "The irony is, a ventilator keeps you alive, but it damages your lungs in the process."

The cost savings -- around $13,000 a month -- are impressive, too.

"It should free you up quite a bit," he said, alluding to the hope that the device will allow Hopkins to breathe on his own. The team will further weak the device's programming today and train a team of South Davis' respiratory therapists.

This is karma, Mike Battin told his stepdad. "It's payback for working at a goal for a very, very long time."

Next stop for Hopkins? Returning to his Avenues home -- possibly within weeks -- to craft a new life from the remnants of the old.

pstack@sltrib.com

In his own words

"I told the respiratory therapist I seem to be getting better and better at this breathing control, talking through the speaking valve with a deep, resonant voice. And today I read a page and a half-long paragraph from Proust's Swann's Way. I'm going to miss all this breathing work, frankly. Contrast this with the blogs from last year at this time, when 20 minutes was a triumph, and having an ecstatic experience during five minutes of a 20-minute period was immense, but only the beginning. I really felt wistful yesterday, a very strong feeling. ... We start over again with something artificial, something that will control my breathing, that will produce regulated breaths, the timing not under my own control. Of course, this is a giant advance over being on a full ventilator, but just the same, it makes me nostalgic for what I imagine will seem like the good old days (as awful as the early trach-masking was). I've been waiting for this implant for at least seven months and am extremely eager to have it, but just the same with a tinge of regret.

Source: www.brookeandpeggy.blogspot.com on April 8

Post-Op

Brooke is out of surgery and doing well! The surgery went as planned, the pacemaker is in place and will be programmed/fine-tuned over the next few days. More updates to come...

- Greg

Pre-Op

Brooke’s procedure for implanting the diaphragmatic pacer is scheduled for this coming Monday, April 12. We’re in pre-op mode, beginning to wind down from the intensive trach-masking exercises that he’s been doing for the past 13 months vent-weaning here at South Davis, winding down in preparation for the surgery that, we hope, will make it possible to get off the ventilator, at least during the day and perhaps altogether. The idea now is lots of rest, relaxation, calm. There’s nap-taking, mental preparation, and even a sense of preliminary saying good-bye to South Davis, even though he’ll be coming back here after spending two or three nights at the University hospital after the surgery.

Brooke says that for him, it’s impossible not to envision the whole procedure. I can see myself being wheeled into the operating room, being given the first anaesthesia, all the doctors standing around, then waking up after the procedure with doctors and residents hovering around, waiting to see if the thing works. Our own doctor says that he really doesn’t know what things will be like after the operation; after all, it hasn’t been done in Utah before and he only knows about it second-hand, though he seems to be as excited as we are—and we are indeed excited.

But that’s forward-looking; at the moment we’re glancing back. Brooke says he had a episode of nostalgic feeling yesterday afternoon. I’m really enjoying this, he said to himself; I was able to do the chant for five seconds per word, and recite Wordsworth’s “A slumber did my spirit seal” line by line while on the speaking valve—I could go through a trimeter or even tetrameter line with enough breath-force to put real stress on the last word, which I’ve been unable to do before: “A slumber did my spirit seal; I had no human fears...” . I can be hoyered from the chair to the bed or the other way around without the acrobatics of having to switch the vent all around—I just go cold turkey, off the vent for those minutes, just breathing dry, unwarmed room air. I told the respiratory therapist I seem to be getting better and better at this breathing control, talking through the speaking valve with a deep, resonant voice. And today I read a page and a half-long paragraph from Proust’s Swann’s Way. I’m going to miss all this breathing work, frankly. Contrast this with the blogs from last year at this time, when twenty minutes was a triumph, and having an ecstatic experience during five minutes of a twenty-minute period was immense, but only the beginning. I really felt wistful yesterday, a very strong feeling.

Pre-op. This isn’t about the risks and benefits of a surgery in the conventional medical sense, though of course we’ve thought through those. This about something that is clearly a benefit but feels as though it involves a loss, though not one measurable in the usual medical terms. We start over again with something artificial, something that will control my breathing, that will produce regulated breaths, the timing not under my own control although the breaths will be my own, in the sense that it will be my own diaphragm producing them. Of course this is a giant advance over being on a full ventilator, but just the same, it makes me nostalgic for what I imagine will seem like the good old days (as awful as the early trach-masking was). I’ve been waiting for this implant for at least seven months and am extremely eager to have it, but just the same with a tinge of regret.

In the meantime there are three days left to enjoy this breathing process as it is, chanting, reciting poetry, reading prose aloud. We don’t really know what’s coming—who knows, maybe being able to recite a heroic couplet or a series of enjambed iambic lines, or speaking aloud even longer and longer paragraphs of Proust. And then there’s just plain talking, the way regular people do.

A Room of One's Own

Now that Brooke’s time at South Davis is, we hope, drawing to a close, as the surgery for the diaphragmatic pacer that may make it possible for him to get off the vent approaches, we thought it might be interesting to describe the room in which he has spent the past 13 months—virtually his entire 68^th year. Part of the time of his stay in this facility he has spent 22 hours a day in this room, except for a few excursions, trips to the University hospital, and wheelchair rides around the block last summer, and for at least two and a half months last fall he spent 24 hours a day in it, in bed. Needless to say, the room and the objects in it have become extremely familiar to him.

The room is on the southeast corner of the hospital building, on the second floor—it’s the last room down a long corridor, but there’s an outside staircase right beyond his door that makes it easy to reach him. The room has a window that faces onto an extremely banal street, with one-story brick houses and apartment buildings across the way, inhabited by ordinary citizens of Bountiful, Utah. When Brooke was doing trach masks in his chair, many months ago, he used to sit staring out at this view, watching the human activities on the other side of the street—people picking up mail out of their mailboxes, schoolchildren walking home with backpacks slung on their shoulders, and so on. But from his bed, he can only catch a side-glance view of the outside world, watching the seasons pass, as the days grew longer last spring, then shorter in the fall, and now longer again, Usually he catches his most concerted glimpse out this window in the early morning, when, if he is turned on his side, he sees the tops of the trees in the near distance.

That’s it for the outside world, for most of Brooke’s day.

The most striking thing about the room when we first entered it was the color of the walls, a kind of light chocolate brown called “mocha” that is extremely pleasing to the eye, especially when the light from the window or from the lamps inside changes. Like the other rooms along this end of the corridor, Brooke’s room had obviously been newly redecorated when he arrived. The other aspect that struck us was the furniture: clearly some effort had been made to turn this hospital room into something more like a hotel room. There’s a (pseudo)mahogany armoire which conceals the television (rarely watched); there are three or four upholstered chairs, there’s a matching mahogany side table with a lamp like you’d find in a genuine living room, and a large green fold-back chair in which, if it were just a little more comfortable, a visitor could spend the night. There are two matching dressers: one with packets of catheter tubes and pads and trach supplies; the other with Brooke’s clothes and an entire drawer of greeting cards from last year’s Christmas and virtual birthday. There’s a sink, with various dispensers of hand-sterilizing liquid. There’s a dispenser for latex-free gloves in three sizes, small, medium, large, which every aide or nurse who is going to touch him puts on when they come into the room. Then there’s the bigger stuff we’ve brought in from the outside: a CD player and an ipod player (wonderful gifts); 3 wooden barstools (garage sale, $10) great for sitting by the bed; a bar-height chair (garage sale, $12) even better for sitting by the bed, and drawings everywhere by granddaughter Sydney, some made when she was still four, some when she was five, and the most recent ones now that she’s about to turn six. Oh, yes, and the medical equipment: the ventilator, of course, a big machine that sits next to the head of Brooke’s bed, with its elaborate array of hoses: blue ones for air going in, white for air returning out. There a suction device, and the much appreciated CoughAssist that clears secretions out of the airway. There’s the giant wheelchair, parked as nearly in the corner as you can get it to be. There are examination lights overhead—we put in broad-spectrum flourescent bulbs--though for the most part we keep the lights pretty low, like the ambience of a living room. And, of course, the bed, this enormous, bariatric-width low airflow bed that has been so effective in preventing bedsores.

Central in my focus, though, says Brooke, is a landscape painting—two canvases, separated by about a foot of wall space—depicting a pastoral scene in autumn: a meandering brook in the foreground, various trees in the near view, and a woods in the background, all in muted colors complementing the wall. I used to stare at this painting obsessively in my early months in this room, partly because the two sides of the painting don’t quite match—an effect clearly intended by the artist, who invites you to imagine the part of the landscape that isn’t depicted, but falls in between. For some months, however, I have hardly looked at this painting, as if it were like a CD played too many times that you come to know too well. To the right of the painting, now, are some signs taped to the wall: one of them contains an odd collection of runic sayings: Keep moving all the time. Om mane padme om (in bold letters). Easy on the water after 7 pm. And om-ah-hung. I use the saying in bold letters, which is in Sanskrit and means something like “After the sacred syllable om, the jewel in the lotus” as a chant that I can repeat over and over again when I’m using the speaking valve during trach mask, to try to get the sounds to come out naturally—not from the throat, which makes them raspy, but a little higher up, in the mouth. Below this sign is another my own handwriting, if you can call it that, done with the help of one of our occupational therapists: it reads Take refuge in the Teacher, in the Way, and in the Sanga. On the dresser to the left of these signs, now filled with flowers from my birthday, is a set of drawings that I’ve made over the past few months, including a rocket ship going to the moon, an igloo, and a house. On the top of the armoire are various CDs and books, the remaining three wineglasses (we keep breaking them), the photograph of a Buddha figure I took in Myanmar, which we talked about some time ago, and another Buddha image given to me by the Lama on a visit a while back, and a Big Man’s hat from Papua New Guinea, given to me by our anthropologist friend who does research there. And, of course, there are numerous sticky notes, some with phone numbers, some with reminders, and some with hearts that say Love.

Over the past thirteen months, I’ve lain in bed in this room taking hundreds of thousands of deliberate deep breaths, sometimes listening to books on tape, sometimes to music—especially Bach. It may sound confined, but I don’t think I’ve ever been bored in this room. In the daytime, I’m concentrating on breathing, or on the nursing staff and what they do for me, or on the friends who bring me good meals and read or talk with me, or try to envision this blog as a whole; when I’m awake at night I’m peering into the reflection of the ventilator light on the mahogany surface of the armoire in front of me. For some reason, this is not boring to me; it’s just part of the life I’ve been living in this room. My Room. After all, this is, in an only somewhat stretched analogy, really a Room of One’s Own, my own. Virginia Woolf’s notion of the room of one’s own was to have a space for doing what one wanted most—for her, to write; for me, at the moment, it’s more elemental: to breathe. It seems amazing to me, now that I may be about to leave, that I’ve lain here for over a year working on breathing, now up to between four and seven hours a day just breathing, taking deliberate breaths, attending to each one, in and out.

In a way, it’s not so different from her commitment to writing: I’ve been using this room to do what—given my circumstances—I’ve wanted most, to achieve the simple capacity to breathe on one’s own. (Perhaps that’s why I haven’t been bored, not for more than a year.)