The Dark Side of the Moon (Again)

            Inevitably (but you’ve heard all this before, and you’ll undoubtedly hear it again in these pages), the payback comes.   Seven hours off the vent yesterday, a new high, followed by four this morning, brings exhaustion.   CO2 levels rise, respiratory rate increases, SATs go down, and the feeling of exhaustion overwhelms, bringing depression and leading ultimately to the wish that this were all over.   That’s the way it’s been this afternoon, just a day after Thanksgiving, when we had such a good time eating the traditional turkey feast with close friends. 

Why doesn’t one learn from past experience?  This pattern has happened over and over again:  the euphoria blinds one to what is coming.  The euphoria involved in breathing is all-consuming; when it’s happening, there’s nothing quite like it--even though it not only doesn’t last, but gives way to something as dark as the euphoria is luminous.  You can imagine just how dark that is.  That’s where things have been this afternoon—even though we can remember the triumph of yesterday, seven hours off the vent.

 But we do learn from past experience, once the worst of it is over.  This pattern is actually recommended by some experts in trach-weaning: push, push, push, then collapse. Then do it over again.  Despite the overwhelming interval of despair, Brooke is really on a roll. 

Thanksgiving, Friendship, Trout

We ate turkey for Thanksgiving dinner at South Davis, the traditional meal, but trout came to be an important part of it. Not part of the dinner itself—no, this was a classic Thanksgiving feast, cooked by two couples of very close friends, with a third dropping in to say hello. You know how a dinner like this goes: turkey, stuffing, potatoes, gravy, yams, sweet potatoes with oranges and figs, turnips, spinach, and an astonishing cranberry sauce. A nice light red wine. And two pies, apple and pumpkin nut, made by still other friends. We talked about friendship, or, rather, we lived friendship, understanding what it means in these extraordinary circumstances. We wished others could have been there too, family, other friends, people with whom closeness is growing. We’re well aware of the changes in friendship patterns that occur with any major life event, especially the traumatic ones, whether it’s divorce or losing a job or breaking your neck—some old friends shy away, too embarrassed about what to say or too busy with the trauma in their own lives; others come into much clearer focus. But somehow this injury has been a friendship magnifier—Brooke and I both say, we had no idea..

In any case, this was a wonderful Thanksgiving. There was a lot of talking, but also a brief reading. Just the day before, Liz had found a slip of paper with a handwritten poem she composed last spring—something that captures the hard thing all Brooke’s friends and mine are having to do, come to terms with increasingly apparent fact that Brooke’s paralysis is looking more permanent, part of the long-term future. Here’s Liz’s poem—(could it be called “Brooke Trout”?):

At first, right after the accident, I was wishing on stars, even on starless nights, wishes that would have had you leaping tall buildings in a single bound by this time. Now I dream of fish. They rise up out of sleep like trout Peggy and I once watched in a swift stream on Boulder Mountain. Fish that hold themselves steady in the current with almost imperceptible movements of fins and tail.

Lucky fish. Schools of perfect bodies with one single mind. A simple mind. Poor fish.

The almost imperceptible flickers of your fingers and toes as your mind moves back into your body. Poor, imperfect body. But what a mind! The entire Pacific Ocean of a mind.

Liz Kuhlman

Spring 2009

P. S. Just the same, Brooke’s poor imperfect body is still making progress. He did a total of seven hours off the vent today, yet another new record, and said it wasn’t hard at all.

The Brighter Side of a Difficult Situation, Cont'd.

Continuing from earlier efforts, we’re looking at the brighter side of a difficult situation--but yes, there are brighter sides. Brooke achieved several milestones over the past twenty-four hours. For one thing, yesterday afternoon, in his second trach mask trial of the day, he reached a tidal volume of 682 cc.—way, way beyond the 100’s and 200’s he was drawing when he was first here, and even beyond the 300’s and 400’s of recent days. His tidal volumes have normed somewhere between the higher 400’s and 500’s. His 682 seems to have impressed even the most hardboiled of respiratory therapists, especially the ones who once thought he was never going anywhere.

Then today, Brooke spent six and a quarter hours altogether off the vent. The afternoon was a particularly sublime experience. After “releasing impure thoughts from his mind” by meditating on what he calls the “Great Sea of Tranquility,” beneath which the kelp of his earlier imagery waves gently in the currents, with a single fish gliding through it, sometimes he sees the Buddha in his sitting position, floating above the Sea of Tranquility, meditating upon it. This image, when it comes into his consciousness, he says, immediately purges impure thoughts.

Impure thoughts? Anger, resentment, disillusionment. You don’t have to use weird Buddhist language to recognize these things; they’re always around But during this afternoon’s trach mask, Brooke says he could visualize and actually feel his own chest wall moving back and forth, in and out, in and out, in and out, as he inhaled air through his nose and expelled it through his mouth. The visualization helps to concentrate the mind, he says, when it wanders away, as in any form of meditation, in random thoughts about the past or the future. He says he can pull his mind back into the immediate experience of feeling his chest wall move back and forth, and sometimes he can visualize his diaphragm ballooning out and then contracting, over and over again. This afternoon he was on the trach mask for two and a quarter hours—after four this morning—and didn’t want to stop at all. He says this made him think that in some odd way this whole nine months has been leading up to these moments, as day after day, day after day, twice a day on a regular basis, he has tried to push himself to gain strength. The pattern is so predictable: there are periods in which his strength dips, almost inevitably, followed by rest periods in which his mind and body gain strength and then push toward new heights of breathing ability. This is what he asked: How many people have been given this crazy opportunity to recover breathing, over such a long period?

When he is trach-masking, Brooke’s room takes on the air of a monastic cell. He is confined here, in effect, since he still has to be tethered to the warmed and humidified air supply, even if he is breathing this air on his own. He only rarely gets glimpses of the outside world, especially since he has to remain in bed, not in the wheelchair, as the surgical wound from his abscess heals. Not until 8:30 in the morning, when his morning trach mask begins, does the sun even penetrate his room, and it remains at a low, dim angle all day.

Brooke says he always wanted to go on a year-long Buddhist retreat. Now here I am doing it, he says, and somehow my earlier meditative practices are bearing fruit. They were often painful and frustrating, especially during the early parts of a ten-day sit, but they were of tremendous importance to me as well. Of course they were different from my present breathing trials: for one thing, during those ten-day sits I didn’t have Bach cantatas playing in the background, as they are now, or Julian Bream’s guitar—you wouldn’t find these in a Buddhist monastery. But so what; Bach penetrates the mind on a deep level, making profound, almost organic meditation possible. My room feels like a monastic cell—larger, perhaps, and more cluttered, and if my eyes were open I would see boxes and paintings and a looming TV set that is almost never on, but it bears sticky notes with love-hearts and cupid’s-arrows and stars. You wouldn’t find these in a monastic cell either, but in spite of the fact that this same room is open to a regular procession of nurses and aides and respiratory therapists, as well as visitors, it can still feel like a monastic cell when I am in my deepest mode of breathing. I like it. I love it.

All this is to look on the bright side of a difficult experience. (We certainly know there’s a darker side, of course, much darker.) Not always, but sometimes, these breathing exercises give me enormous joy as they are occurring, and I now actually look forward to these sessions, instead of anticipating them with the stark terror they once held. I look forward to them in the same sort of way I looked forward to the last several days of meditation during my Vipassana courses—that meant just sitting, and running the mind up and down the body, feeling the sensations. Here, in my trach-masking, the meditation is partly Zen-like in that it especially focuses on breathing, not just physical sensations. How many breaths of my own can I have taken over the past nine months here at South Davis?—who knows, hundreds of thousands, I suppose--and now, all that breathing, all that anxiety, seems to be passing away as the trach trials become something I actually look forward to, especially when the therapists are empathic and respond to what is going on with enthusiasm, and especially with Peggy in the room, grading her papers and sometimes dozing off in the big green reclining chair that is part of the furniture of this room. You wouldn’t find a chair like that in a monastic cell either, or your wife, but I’m glad they’re here.

What can one say if all this stuff about organic meditation and monastic cells sounds curious, or bizarrely religious, or just weird and strange? That’s fine. Life is sometimes extremely curious, and offers gifts when you least expect them and under circumstances that from the outside would appear desperate and impossible.

There are hundreds of poems and prose works built around the topos of the prison—think of Coleridge’s “This Lime Tree Bower My Prison” or Winnicott’s paper on imprisonment. The paradox of the prison is that it can hold the body in confinement—in my case, not just confinement but paralysis—and yet liberate the spirit. My monastic cell—when it’s not serving as a hospital room or a living room for receiving friends and family and guests—is like that kind of prison, confining and yet sometimes strangely liberating when I breathe.

Remodeling and Renewal

             A few nights ago, Peggy went to a gathering hosted by our friends Dave and Liz to celebrate Brooke’s progress so far, precisely a year after the accident. As it happens, Dave and Liz had just remodeled their kitchen, with quite spectacular results, and Peggy was seeing it for the first time.   She was astonished by how much a simple renovation can do for a living space like a kitchen—or rather, something that that was already a living space but has become so much more so.  When she got home, she took a fresh look at our own kitchen, and realized that it would take some doing to make our fairly compact kitchen available to Brooke in his wheelchair, but that by making use of a dining area that had come to serve largely as a repository for piles of magainzes, bills waiting to be paid, and infestations of sticky notes, the area could be opened up.    There is after all a new front door that enables Brooke to get into the house—that’s already one change.  And there are new French doors leading out onto the deck, so that now Brooke can now get out of the back of the house—that’s another change.  These are both changes we’d never have thought of if we weren’t forced into it by needing to accommodate the enormous wheelchair, but it applies to the kitchen too.

In fact the accident has forced us to think about our whole house in entirely new ways.  There are some obvious changes coming:  it will have to be far less cluttered, have less furniture, have no carpet or  area rugs, and in general be opened up to make space.  The same sort of thing is true for the garden—to make it accessible to Brooke, it needs to be completely revised.

When Peggy got home from Liz and Dave’s, she got out a tape measure and a piece of paper to draw a little sketch, and it led us to start reflecting on the kinds of possibilities that Brooke’s injury and the change in our ways of living will necessitate—or, rather, invite.  It would be easy to see all of this in a wholly negative light, to dwell on the inconveniences, the disruptions, the expense, the losses and limitations that Brooke’s accident has brought in its wake.  The list of losses—loss of ability to be spontaneous, to spend lots of time out of doors, to go to lectures easily, to travel, even just to go to the movies, is of course long--but as we looked at Peggy’s drawing we started to notice some of the opportunities that this misfortune has placed in front of us.  It’s difficult to capture the spirit of a conversation that goes on between two dear, dear friends between 11 and 12 o’clock at night, when both of them should be in bed, but that conversation tried to capture the spirit of possibilities that might unfold, and there are many of those.   This blog is only one—it would never have been written, obviously enough, if Brooke hadn’t suffered his injury, and it wouldn’t have been written if the injury hadn’t been so serious.  We’ve tried to make something truthful, even sometimes beautiful, out of the suffering of the past year.  But this is true also for the more concrete, ordinary-seeming matter of remodeling one’s house.  Now, we have to think more carefully about how a house functions, what purposes it serves, how it is or isn’t accommodating both for the people who live in it and whether it welcomes people who come to it.   Lots of people remodel their kitchens, but that is sometimes just matter of trendiness or glamour; for us, it requires a complete rethinking of how we can live together in the future, not only with each other but with Brooke’s medical caregivers and with our friends and family.  We have to rethink cooking and eating from the ground up.               About cooking:  Brooke used to be the cook in the house, and he was happy to cook in a relatively modest kitchen—no granite countertops, no warming drawers, no hanging racks of copper-bottomed Italian saucepans—but now he’ll be cooking by administrative fiat—that is, we imagine, reading recipes on his voice-activated computer, telling the rest of us what to stir, what to chop, how much spice to fold in, tasting sauces as they simmer.   But this can be an opportunity too:  we imagine that people will come to cook with Brooke—a joint project, where he offers a bit of culinary experience and sensitive taste buds, and they provide their own culinary experience but also the hands to do the actual work.  The product is a joint one.   (The same goes for working in the garden.)  Already, one of the unexpected benefits of our situation is discovering what our friends eat—they bring wonderful and varied stuff, stuff we didn’t know they made.  Now,  maybe, they will sometimes actually cook it at our house.

 And about eating:   We also recognize that eating, that principal focus of many social occasions, with be transformed too—not only does Brooke have to have food lifted to his mouth by someone else as long as his arms aren’t yet functional, but we can’t go to the homes of friends for dinner because they all have stairs—it’s as simple an obstacle as that.  But while that might be seen as wholly negative, it can be viewed as an opportunity as well—now friends, we hope, will come to us, cook with us, eat with us, in a way that is more communal and close.   We can’t really just invite people for dinner in the conventional way—Peggy alone couldn’t possibly cook it all, and in any case inviting people “for dinner” conveys a somehow more formal message—but we can welcome people for cooking together and then eating what we cook.

The same goes for music.   Brooke won’t be able to go to concerts very easily,  at least at first,  but we hope music will come to us—just as people have been playing music for him in his hospital room—cello and guitar; blues bands; violin duets; classical guitar; harmonicas, and more, we hope they’ll come to us.  We often treated our house as a staging place for jumping off into exotic foreign travel; now home will become, we think, much more of a home, a place music happens, a place much more central in our lives.

It’s impossible to see the future, as we all know, though you can see that we are beginning to think about what’s involved in Brooke’s coming home.  As we are both painfully aware, it is easy to slip into depression under some circumstances, especially anxiety about a radically changed future; depression is a constant temptation.  But it is also possible to put on different mental and emotional spectacles and try to see the rich possibilities that may open up if one can only hold onto a spirit of optimistic open-endedness, and be willing to rethink some of the most basic things about how one lives—including, for instance, something as seemingly obvious as how one lives in one’s house.  

 

 

None of this is to imply that at the present moment Brooke’s physical situation is not continuingly difficult—sometimes he’s blazingly hot, sometimes freezing cold, a matter of impaired temperature regulation.  Relentless days of hard work on trach-mask trials breathing off the vent (5 hours and 20 minutes yesterday, most of it blissfully easy) are followed by a predictable day or two of collapse (only an hour today, every minute of which was a struggle to stay afloat and to stave off panic). Sometimes there’s whole-body pain, though fortunately not too often.  He’s still confined to bed while the wound from his abscess heals, perhaps a week or more to go, and longing to be able to get up into the wheelchair and move around.  Yet we can still imagine a future in which these difficulties subside at least partly and a new era of living well together opens out to include Brooke and everyone who cares about him.   The trick is how to remodel an ordinary home into one that is a source of renewal, not just for its occupants but for everyone who comes into it.  We have been talking about a more “home-based” life; but are only beginning to think through what “home” can mean.  

Setback, then forward

In case the account of Brooke's recent transport to the U hospital for surgery on an abscess seemed alarming, please know that he's back at South Davis now, "resting comfortably" as they say. It's true that he has to stay in bed, not sit up in the wheelchair, until the incision heals. But it's not entirely true that he's resting--he's back at work on upping his off-the-vent times (he's up to six hours a day again, on good days at least) and has a new motorized pedal exerciser for the legs. He says he feels much better--indeed, yesterday he said he felt "great."

(Hooray for big antibiotics and for very attentive care.)

Salt Lake Trib story, text of Part III

Brooke Hopkins: A year after paralyzing accident, setbacks set in

Health » Retired U. professor making progress, but it comes slowly and painfully.

By Peggy Fletcher Stack The Salt Lake Tribune Salt Lake Tribune

Updated:11/13/2009 07:18:23 PM MST

Nearly one year after a bike accident paralyzed him, Brooke Hopkins found himself once again being rushed by ambulance to University Hospital. This time Hopkins was coming from the Bountiful rehabilitation center he has called home for the past nine months. A spreading infection was ravaging his body, sapping his strength and prompting bouts of depression. He had trouble pushing through the breathing exercises he had mastered and, for the first time, even fantasized about starving himself to death. In an emergency procedure near midnight Tuesday, University of Utah doctors cleaned out a tangerine-sized abscess in his scrotum and poured antibiotics into his system. Then they returned him to the hospital floor where he had spent weeks in 2008. Surrounded by familiar and friendly faces, Hopkins felt like he was back where he began -- sleep deprived in a hospital unit that is always active, brightly lit, with endless intrusions and the constant beeping of monitors. Today marks one year since that terrible Nov. 14, 2008, afternoon, when he and another biker collided in City Creek Canyon near downtown Salt Lake City, leaving Hopkins with a broken neck and almost no movement. Much has happened in 12 months. After strenuous physical therapy and practice, the retired U. English professor now can talk and eat, move a few fingers and toes, breathe on his own for hours at a time and drive his wheelchair with a joystick. He dictates his writing with a voice-activated computer program and takes calls from friends on a voice-activated phone. Still, progress is excruciatingly slow and painfully frustrating for Hopkins, a once lively teacher and outdoorsman, as well as for his family. "We've been forced into running a marathon, and we've just completed the first 500 meters," says stepson Mike Battin, who owns a medical-software company in Seattle. "We get closer by inches to the finish line every day." To some skeptics, the one-year anniversary is the finish line. Traditionally, doctors believed patients with spinal cord injuries would see all their potential recovery in the first year. After that, it was nothing but a plateau. Dale Hull doesn't buy it. Neither did Christopher Reeve. With unlimited resources and determination, Hollywood's "Superman" displayed unprecedented movement some seven years after he broke his neck during an equestrian competition in 1995. He died in 2004 of complications from an infection caused by a bedsore. Hull, an obstetrics and gynecology doctor in Utah, suffered a spinal cord injury while jumping on a trampoline in 1999, rendering him a quadriplegic. At the one-year mark, he saw no reason why he couldn't continue to improve. By researching the medical data, he noted that most patients didn't receive any more therapy after a year. Thus, he says, the plateau became a self-fulfilling prophecy. Hull felt liberated by that discovery. After 2½ years of intense therapy, he carried the Olympic torch for 2002 Winter Games in Salt Lake City. Today, he runs Neuroworx, which provides rehab as well as physical and aquatic therapy for spinal cord patients. "The central nervous system does heal," Hull says, emphatically, "but at a different pace and mechanism than we are accustomed to seeing with other parts of the body." Will insurance companies be that patient, though? Peggy Battin, Hopkins' wife of 23 years and a nationally recognized medical ethicist, estimates that so far her husband's recovery has cost more than $250,000. University Hospital charged $147,163.24, for his three months there, but settled with the insurance carrier for $35,178. The South Davis Rehabilitation Center billed an estimated $46,000 a month and settled instead on $11,000. The couple are insured by the U., where Battin still works, and by Medicare, because Hopkins is 67. Together the two policies cover most procedures, with a lifetime ceiling of $2 million. They have case managers at the rehab center and at the insurance company who scrutinize every item of care. So does Sheila Steiner. Vice president of business development for World Trade Center Utah and a longtime friend, Steiner was among the first to show up at the hospital after the accident. Sitting outside Hopkins' room, Steiner had one recurring thought, "This could be me -- either in the bed or in the waiting room. " Not good at casseroles, cleaning or lawn care, the detail-oriented Steiner offered the one thing she could do: organize the bills. So every week from that day to this, she has picked up and tracked the piles of notices from various providers. She has met with hospital representatives, insurance case managers and billing staff. She has spotted errors and worked to correct them. "I have a giant loose-leaf binder, all organized by provider," Steiner says. "Honestly, my agenda is to fight for every penny because there may come a time when there aren't any more pennies." Unfortunately, the couple's insurance case manager was among those let go this week because of downsizing, leaving them without a strong advocate while the company decides whether Hopkins' progress meets the criteria for continued therapy, or whether his support should be reduced to mere maintenance. This has been "the most extraordinary year of our lives with the highest highs and lowest lows," Battin says. "We have come to a greater realism, balancing the tension between outrageous optimism and the risk of resignation." For his part, Hopkins is exhausted but free of infection and back to the rigors of rehab. On Friday, he spent two hours breathing off the respirator. "I'm not gleeful at the moment," he says. "But I don't see any reason why I couldn't continue to improve." After all, he says, one lives on hope. pstack@sltrib.com Continuing coverage A year ago today, Brooke Hopkins, a retired University of Utah English professor, was paralyzed after a bike collision in City Creek Canyon. The Salt Lake Tribune has been chronicling his rehab as well as the accident's effect on his wife, Peggy Battin, a nationally recognized medical ethicist.

Salt Lake Tribune story, Part II

The Salt Lake Tribune has published yet another front-page story about Brooke, this one rather bittersweet. Here's the link:

http://www.sltrib.com/ci_13784011?source=most_viewed

What We've Learned

It’s been a long, impossibly difficult year since the accident.  We’ve thinking about what we’ve learned.  

Friendship.  The first thing that comes to our minds is the value of love and true friendship.  This might sound sappy, but it’s a little like that experience that occurs when you get new eyeglasses for the first time—you suddenly discover that there’s a whole lot of fine detail out there in the world that you’d been missing, that you just hadn’t seen, but that you weren’t aware of missing.  Sometimes friendship, love, has come from unexpected places, from people we hardly knew before the accident, and emerged with a depth of affection and generosity that we could never could have hoped for.  It has come from family, from friends we know well, friends we’ve known since childhood, colleagues, people who’ve come to visit from distant places, caregivers.  This remarkable, extraordinary generosity and affection has sustained us through the rigors of the past year. 

 

Patience, infinite patience.  What you think will happen in two days often takes a week or more.  And what you think will take two weeks sometimes takes two months.  This is the way the process of neural recovery we have been going through works.    When I asked one of my most trusted respiratory therapists what the key was to all of this, he said, time is the key.    Time is the key.  It takes many months of weaning off the vent to really fully realize this, and when we have been able to be genuinely patient, progress (if you want to call it that) has occurred much more quickly.  A friend of ours, a sleep doctor, says that rest is almost as good as sleep; in this process you have to learn how to rest, and patience is the key to that.  If you let it happen, it will happen at its own pace, and if you let sleep happen without trying to force it, it will come to you, folding you into the arms of Morpheus.

Without relapsing too much into religious vocabulary, we’ve learned that there is such a thing as faith, that there is a spiritual dimension to this, which I’ve somewhat lost sight of.   That’s what the lama reminds us of when he visits.   When the lama said that the body is insignificant, the mind is everything, we didn’t believe or understand at that point exactly what he meant.  We also didn’t understand at that time the nature of the compassion that he said would flow from the accident and along with it the happiness that this accident and the so-called suffering it produced would yield.  Of course there’s been real suffering and real anguish.  Of course there have been times when we have lapsed back into comparing the present with the past and the future—these moments only produce hurt, and reduce potential for real mindfulness and concentration on the moment, however difficult it might be.  But still the underlying lesson has been that there are in fact “invisible powers” that are there for you, if you will allow yourself to have faith in them, although we don’t mean this is any conventional religious way.   Surely this is related to the love and true friendship we’ve mentioned above, and it’s also related to patience; both are invisible in a sense but also have power.  But there’s something more to it than that, to use the cliché,  something that “cannot be expressed in words” because it is beyond words.  To employ the lama’s mystical discourse, it’s as natural as the rising sun and the flowing rivers and the snow that may be falling soon outside, and that’s why it is sometimes so hard to perceive, like the fine detail you see when you first get new eyeglasses.  Our minds get in the way of us,  Our minds block us from it, as they block us from understanding  the naturalness of the rising sun and the flowing rivers.   In all this, raw experience has been our teacher, experience of a sort that we never in a million years thought we would go through—indeed, we never though about the possibility of paralysis at all.   It seems odd to be thankful for it, but that is the way we feel, at this moment, anyway, not thankful for the paralysis itself but for what it has brought us over the past year.  

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Almost Exactly a Year Ago: Back to the Hospital Again

            Almost exactly one year ago, on November 14, Brooke had his accident.  Ironically, in the past two days, he has found himself back at the same hospital where he’d been taken after the accident, the University hospital, and on the same unit, the IMCU, where he’d spent two weeks after his initial stay in intensive care but before going to rehab.  He was there this time because of an infection that had been growing silently for perhaps weeks, involving a number of stages—a break in the skin, a pustule that developed, then more rapidly larger areas of inflammation and eventually an abscess in the scrotal area, an abscess the size of a golf ball, perhaps as large as a tangerine.   As the infection hadnprogressed, and perhaps because of it, he was less and less able to do the trach masks, and found himself more and more depressed.  He described it as a black pit, in which he wondered to himself almost for the first time whether any of this mental and physical pain was worth it.   He had fantasies of starving himself.

            On Tuesday evening, when the abscess became fully evident, he was transported by ambulance to the University hospital—our son Mike, himself a paramedic, rode with them—to be admitted through the emergency room.  There occurred the first of multiple encounters with people Brooke had known from his stay in that hospital almost exactly a year ago, a nurse who’d taken care of him in the ICU, recognizing him after all this time.   We met the new urologist he’d been sent to see:  an impressive new faculty member, informative, thoughtful, straightforward, and we both like him very much.  Brooke was whisked off to surgery almost on the spot, easy at that late hour—almost midnight-- when things were not so crowded.  

            Ironically, this was supposed to be the day of Brooke’s first full home visit—to survey the modifications that have been done to the house, to explore how he and his mighty wheelchair will fit in the various spaces of the living areas, and to see, more painfully, what it will be like to live again in his same home in such changed condition—for worse, but also for better.  But here he was, back in the hospital.

            After the surgery—it went quickly and well, the abscess incised, cleaned out, packed, and various more serious contributing factors ruled out—he spent the first of two nights in the IMCU.  Lo and behold, practically the first face he would see in the IMCU was that of one of his most favorite nurses of all time (though there have been many others)—he wrote about her in a much earlier blog, without mentioning her name—and there she was again, just as radiant, just as positive, and utterly welcoming—and if it weren’t such a bizarre situation, back in the same hospital a year later, as if all that had happened in between had just dropped out of sight, it’d be like coming home.  He recognized many other people he’d know earlier too, from the senior attending physician to the nurses’ aides, and that was the good part.   Of course, there were less good parts:  a hospital unit like this is always active, brightly lit, with endless intrusions, and every piece of equipment in the room, from the ventilator on down, has an alarm system that beeps or chirps or nearly screams.  What initially seemed almost like a vacation away from home in a new hotel room, a welcome change of scenery and the company of old friends, turned out to mean nearly continuous sleep deprivation and eventually near collapse.  There were further traumas over transport mechanisms for the return and, worse still, insurance challenges over readmission to South Davis.

            The ambulance ride back home was rather traumatic, but South Davis, when Brooke finally reached it, warm, quiet, gentle, even more welcoming.  He was folded back into bed, changed, cleaned, cared for, comforted.  He slept, woke and ate a bit, and is now back asleep again.    He’ll be in bed for some time until the incision heals and he’ll have a picc line in his arm for infusing the two big antibiotics he’ll have on board for the next two weeks, but he’s on the mend.  And he’ll get back soon to where he was, working away from what happened almost exactly a year ago.  

PRACTICAL UPDATE (and Apa Sherpa benefit event for Crossroads Urban Center)

 

            Early on, we wrote a lot about house modifications and other practical matters in preparation for Brooke’s eventual homecoming.   We still don’t know when that will be—sometime after the surgery to implant the diaphragmatic pacer, we assume—but just the same we’ve been preparing.   Here’s what’s new:

 

 

DOORS.

        You can’t get into a house in a 350-pound wheelchair through a narrow ordinary door; you need something more splendid.  We have it: a fine new front door, located, remarkably, in the front of the house.  Now the house has two front doors, the splendid new one and a narrower ancillary one way over to the side of the house,  relegated to secondary status and shades of former glory.   But that’s not all: there wasn’t any door Brooke could get through at the back of the house either, so now there’s an absolutely lovely French door opening out to the garden.  This way he has two routes out into the outside world and needn’t feel so trapped.  Doing this is thanks to our wonderful friend and longtime contractor, Peter Tartaro, making it possible to keep on loving our house.

 

 

THE LIFT.

            You’ve heard a lot about the hoyer here at South Davis, the movable rig that lifts Brooke up out of bed and into the wheelchair or the shower chair.  It’s a bit of a clever contrivance:  it has long legs on the floor that splay out to fit around the base of the wheelchair and an electric hoist that picks Brooke up in a sling, cocooned within the sling in something approaching a fetal position but with his lower legs dangling down.   It isn’t exactly dignified, and it isn’t even comfortable.  But at home we’ll have a ceiling-mounted lift: this is said to be far more comfortable, reliable, easy to operate.  It isn’t installed yet and you might not think it looks safe to hang by such a comparatively slender thread, but the guy who provided the estimate for installation says he always tries it out on himself.

 

THE BATHROOM

            Bathrooms come in as many designs as there are various kinds of disabilities: roll-under counters, roll-into showers, etc. etc.  We have in mind to run the same ceiling-lift system right into the bathroom, where it can deposit Brooke onto a shower chair or maybe, with luck, right into our jacuzzi-jet-equipped tub.   Think of as a kind of home spa, not just hygiene.

 

 

THE GARDEN

            No doubt you’re still waiting for the outcome of the Get-Brooke-Into-His-Garden Contest staged last spring.   Actually, there will be quite a lot of winners,  since many of the suggestions have been so good and will no doubt be incorporated into whatever proves the final design.  At the moment, though, the garden is an autumnal landscape of old dried stalks and withered flowers and piles of leaves, with the leaves on the huge grapevine the most vibrant red.  The upshot?  The contest is postponed until spring, but we’ll be thinking about it all winter long.  Keep sending suggestions!

 

THE MOUNTAINS

And you may even be waiting to hear about the CarryChair, designed to make it

possible for a group of sturdy friends to carry Brooke into the mountains.     This project got (literally) off the ground this fall—you may have seen it portrayed in the second Tribune article—but is undergoing design modifications over the winter to be ready for spring.   In the meantime, though, for those of you in the area who’ve been helping with this project or are just generally interested in it, Terrell Pool, mastermind of the CarryChair, announces a benefit for the Crossroads Urban Center next Sunday, November 15, featuring a remarkable person who’s been involved in CarryChair design and testing:  Apa Sherpa, World Record Holder for the Most Summits of Mt. Everest (19, including 4 without supplemental oxygen).  The benefit is to be held at Acme Burger Company, 275 South 200 West, 4:30-7:00 pm; tickets are $50.  For reservations, call (801) 364-7765 (Jim at ext. 132 or Glenn at ext. 126).    Apa will give a little talk and show some astonishing slides at 5:15.    For those of you who’ve been involved in the CarryChair with Apa you’ll know that it’s a great pleasure to be around him; for those who haven’t met him yet, come and do so for this extremely worthy cause.  See you there!