PS to media note

In the previous entry about today's TV interview with Ted Capener (5:30 this afternoon, Ch. 7, KUED), I didn't mean to suggest that Brooke is thinking about physician-assisted suicide (at least not in any way beyond reflections on whether life in his situation is so difficult that it would be better not to be alive at all), but only that it's a topic I've been writing about professionally for years. That's what the interview is about. Oh, the irony.

Peggy

Quick media note: Ted Capener interview, Channel 7, Sunday Dec. 26, 5:30pm.

Brooke’s been home for three weeks now and we’ve been trying to compose something about what this amazing transformation is like, but it’s so challenging that we’ve only managed a paragraph or two.

In the meantime, you might like to know that KUED, Channel 7 in Salt Lake, will be broadcasting Ted Capener’s half-hour interview with Peggy about Brooke and the issue of physician-assisted suicide, 5:30pm Sunday Dec. 26. You see her convictions and watch her unease.

Adapting to Home Life: The Carolers

 

Everyone told us that the first month or so at home after discharge from the hospital after such a long time would be the most difficult period of the whole experience.  They were wrong.  Of course, this isn’t to say it’s been easy—indeed, there’ve been some pretty dicey moments—but only that there’ve been plenty of really difficult moments in the past.

 

Of course coming home was difficult at first—no matter how diligently we’d prepared, there were still plenty of things we hadn’t anticipated.  There were constant fires to put out, about staff, about supplies, about insurance, about virtually everything.   But there are also positive things we hadn’t anticipated.   People had for instance told us that patients often do better at home because they’re not exposed to the really hardcore germs that inhabit hospitals; indeed, knock on wood,  they’ve been right so far:  Brooke hasn’t had any kind of infection since he’s been home.   And he’s making much more progress in physical therapy occupational therapy than we imagined possible for a long time.

 

We’ve been moving pictures around, from one wall to another.  The bedroom now has a collection of etchings from Brooke’s family, beautiful old etchings; this isn’t anything like a hospital room or a jail or a suffocating, claustrophobic room, but one with real aesthetic pleasure, if you know where to look.    It’s also possible to sit in part of the house we call the “nose,” a room that projects out into the garden and is filled with light; this is new, too.   Light.  Sunlight.  We’d had broad-spectrum fluorescent tubes put in the ceiling of Brooke’s room at South Davis, but they never really managed to make the place seem like a room filled with sunlight; now we have that, without tubes.

 

And there are pleasures that might seem trivial or utterly ordinary, but are just the same real.   L. filled an old birdfeeder with fresh birdseed; within the hour, the backyard was full of finches and junkos and chickadees. They have their winter coloration, L. explained about the finches,  and they feed energetically on a mild day like this, just before a storm.    You wouldn’t think that watching ordinary birds outside a window would constitute a major pleasure, but it does.

 

 

            Tonight, which just happens to be the two-week mark since Brooke came home, we were visited by a group of young people coming in from the traditional hayride that goes around the local LDS ward every Christmas—we assume it visits people with disabilities, people with difficulties, shut-ins, singing carols, though perhaps they just came to sing to us.   There were maybe twenty of them, junior high and high school age, with all the half-veiled curiosity that characterizes kids of this age.  They sang We wish you a merry Christmas;  then Rudolph the Red-nosed Reindeer; then Silent Night, with one utterly beautiful soft but perfectly clear soprano voice singing somewhat shyly in their midst.     To be on the other end of this was extraordinarily weird.  Weird.  Extraordinarily weird.    Neither of us ever, ever thought we’d be on the other side of that barrier, to be the person that well-meaning kids were wonderfully kindly singing Christmas carols to.  It’s a moment that in a way crystalizes the entire experience, especially coming home where this kind of thing can happen, the way one’s whole identity has changed, at least in the eyes of other people and to some extent one’s own eyes.  It’s like reaching old age in 15 minutes.  It’s like being in a nursing home and having people come in and give away presents to the old guys.    What does it do for your sense of your own dignity?    There’s Brooke in his wheelchair, pausing in the living room as the carolers pour in the door and at a signal, begin to sing and the voice of the beautiful soprano lifts above the group; there’s Peggy standing beside Brooke, her arm around his shoulders at the back of the wheelchair, smiling.  What is it like now, when you populate the scene that is an object of embarrassed pity by these young people?  Of course, some of them will be in your own same spot in the future, but they don’t know that now, and we don’t know that, and of course we would all hope it never happens. 

 

            Peggy can remember scenes like this from her childhood.  She can remember going with a school group every Christmas to sing at the Washington Home for Incurables (now of course renamed).  Brooke can remember visiting their former house-man/chauffeur in south Baltimore; there he was with his diabetes, in a darkened room in a Baltimore tenement house, both legs amputated.  Peggy can remember being taken to visit a woman who was in an iron lung, encased forever in a huge metal cylinder with only her head sticking out, there in the living room of her home just a few blocks up the street from where Peggy lived as a child. 

 

I just have to learn to enjoy being dependent on other people, Brooke says, and I do, mostly.  But did you ever think you’d have to have your bowels probed every morning, have to be hoisted out of and back into bed in a sling, need two people to give you a simple shower, that twenty neighborhood kids would come to sing Christmas carols to you as a good deed?

 

You see yourself from the outside, Brooke says, you see this emblematic scene, but instead of somebody else’s being in the wheelchair, you’re the one who’s in the wheelchair.  And it isn’t a dream.    How often we forget, forget, forget.  Oh my god.  Oh my god, Peggy. 

 

 

            Everyone on earth will be there some day, in some hard place like this, unless they die earlier.  But of course at 66, when I had the accident, I didn’t think I was young, I didn’t think I was old, I sort of always thought I was 33 or something.  I never thought anything like this could happen.  You don’t want young people to stop caroling for people with disabilities, people with difficulties, shut-ins.   You don’t want them to do it, either.  

Actually what you don’t want is to be on the receiving end of it.  And more broadly you don’t want disabilities, difficulties, shut-in-ness to happen to anyone, but they do.

 

 

 

You Can Go Home Again

BrookeBlogCANGOHOME12-6-10.doc  [posted 12-7-10]

 

 

 

 

 

 

 

            You can go home again—but sometimes it’s not as easy as that sounds.   The move from South Davis back to our home on M Street has been a mixture of elation and challenge.  Three or four episodes stand out in the middle of six sometimes calm, sometimes chaotic days, though we couldn’t narrate them all here; suffice it to say that things are, uh, getting better.   Home is sweet and there are many friends, but also many other folks: from the home care agency, from the durable-medical-equipment company, from the air company that supplies oxygen, not to mention our own staff, cobbled together from a curious range of folks who are turning out to work as a coherent team—though, we must admit, a fully functioning well-oiled care machine is still a good ways in the future.  It has been very, very lively, to put continuous commotion in its most positive light.

 

            But there are some surprises.   Our house has been inspected for adequate disability adaptedness no fewer than four times, three by the various hospitals that Brooke has been in and once by an independent nonprofit that specializes in accessibility issues.  We’ve also received impressive amounts of expensive, high-tech equipment—a fancy ventilator, a suction machine, an oxygen concentrator, a nebulizer, a humidifier, etc. etc.  They’re all in the bedroom, ready for whatever respiratory needs might come up.  But, despite all the various inspections and our own long experience with this house, no one seems to have thought about the electrical outlets we’d be trying to plug these items into.  Turns out they’re two-prong, ungrounded outlets, and there are only a couple of them in the bedroom.  Imagine the tangle of outlet multipliers and extension cords, stuffed down by the baseboards where you wouldn’t necessarily notice them—until one sharp eye did.  Fortunately, we found an electrician who came within 20 minutes (!), and by today we’ve come all the way up to code.

 

            On the darker side, Brooke had a dream yesterday morning that also speaks to coming home.   He’s had many, many dreams over the past two years; the vast majority have had to do with some kind of movement of the legs—skiing, skating, walking, running. In nearly all of these dreams, the objects associated with the leg movements have been defective—the skis are broken, the skates are warped, or he has had some kind of limp making him walk way out of balance, and so on.   In all these dreams, however, he has never fallen, and even in the most precarious situations he has managed to stay upright.    These dreams are an obvious reflection of his paralyzed condition, but a condition still seen as only partial.  A few other dreams have involved blissful swimming, or diving off a platform 74 feet high and landing like an Olympic diver in the water below; these dreams don’t involve limitation at all.   Both kinds are surely compensatory dreams, reflecting the wish to be whole again, and not broken.  

Yesterday morning, however, Brooke had a dream that he says was truly strange and frightening, perhaps reflecting not only a kind of farewell to his previous hospital experience but the terror of coming home, even though he’s been aiming for home for so long.  Perhaps emerging from the deepest layers of his subconscious, he dreamt that he was a female tigress confined to an extremely claustrophobic room on some kind of death row, along with many other tigers and tigresses, waiting to be executed for reasons he could not understand.  (Shades of Kafka, someone remarked.)  The room was stiflingly hot, and at one point his jailor or perhaps his hospital attendant came into the room, and he pleaded with her to open the tiny window behind him to give him some air. A slight breeze entered the room, but that alleviated the suffocation he felt only to a minor degree.  He could envision the rooms and their other condemnees stretching down the long corridors of this death row.   He began to emerge from the dream, but was still in it, and he called out to the respiratory therapist working that night, help help, help.  Only gradually did her actual features begin to form in his eyes.  She asked questions like, what’s the day of the week?  Do you know what your name is?  Where are you?   But he was still trapped in his dream and could not escape from its grip.  Only gradually did his own room—the bedroom he had slept in for the past thirty-three years--become recognizable, and then only very, very slowly.    During this whole concluding part of this dream/wake experience he kept slipping back from external to internal reality, a subjective reality that appeared no less real than the world, so to speak, outside himself.    

 

We’ve played with interpretations of this dream.  Brooke says he doesn’t want to go into it—let the dream speak for itself, but it’s clearly a dream about confinement, limitation, what it’s like to be paralyzed in a home in which one once ranged freely about, and of course the fear of impending death.   Peggy’s reading:  it’s about a tigress, a figure of major, elemental power.    This is a dream about coming back into power, part of what coming home involves.  

 

What’s it like to be at home, after two years and two weeks away?  There are losses: there never seems to be any time to listen to all those enormous books on tape the way there was in the hospital, in between interruptions for vital signs, cough assist, cathing, and so on:  everyone who works for us here is here just for Brooke, the only patient, and always has time for him.  Of course, these longer interactions are a gain.  There are losses in efficiency: we have to check and doublecheck everything that’s done for Brooke, and train each other as we go. But there are gains:  training visits from the home care company; they also send an absolutely wonderful physical therapist who rolls Brooke around on the mats, doing trunk work never imagined earlier, and a great occupational therapist and a bath aide who, to our amazement, actually admires our homemade shower chair:  instead of plumping for the $2800+ conventional medical shower chair we didn’t think would be covered and is furthermore bulky, ugly, difficult to store, and institutional-looking, we’d fashioned our own out of a reclining lawn chair fitted out with four casters on the bottom ($100 for the lawn chair at REI, and $50 for the high class casters).  (There’s a tiny part of the larger story here about the high cost of health care, something we’ve been learning a lot about.) 

 

There are even new realities in social life.  Friends have been dropping in, sometimes bringing food, and it is wonderful to see them and to have it be so much easier for them to visit here than to trek up to South Davis, though they recognize that exhaustion can set in pretty quickly.  Just the same, we all recognize the progress that comes with being home and the respiratory and physical progress that is still occurring: no longer having to conform to a hospital schedule; being able to be up in the chair for many more hours a day, doing quite demanding physical therapy, to be able to look out the window into the garden, and, most Brooke-like of all, being able to converse with all sorts of people almost all day.  It might sound limited, but it’s really pretty good.

 

It’s late at night as we write this.  He’s falling asleep, but he says, wryly, adieu, dear audience, we bid you adieu temporarily, while we catch our breaths. 

We’re catching our breaths, in more good ways than one.

 

 

Home

Home, at last.

Details when we have time to breathe, but look in Thursday's Salt Lake Tribune. Brooke says he doesn't want to be a media star--but the simple act of coming home, after two years and two weeks in the hospital, really is news.