Turning Points

             Coming home involves a sense of loss, but also a sense of gain.  First, and most obviously, it is a remarkable achievement for someone with Brooke’s severity of injury to come home at all.   In exploring home-care companies some time ago, talking with maybe half a dozen different ones, Peggy was at one point flatly told, “Well, people with injuries like that don’t usually go home.  Mostly they just put ‘em in long term care.”   Peggy remembers thinking, but that’s a person, that’s Brooke, he doesn’t want to spend the rest of his life in long term care.

           

            In fact, many things are going really well.   Brooke’s just about to begin teaching another OSHER class, this one on The Winter’s Tale: there’ll be fifteen students in our living room, once a week, and the text of the play and scenes from the Royal Shakespeare Company production can be flashed on our big new TV screen.   We’re planning to give a talk this Friday for the board of the Utah Humanities Council—the idea is to explore the role of the humanities, especially philosophy and literature, but also of the great texts of the intellectual tradition, in the way we’ve been responding to our new situation.  We each taught a section of the same general-education/Honors course, Intellectual Traditions of the West, when we each first arrived in Utah—that was fall, 1975—and our ongoing absorption in these texts has made a great deal of difference to us.  There’s other good stuff: our wonderful staff has  smoothed itself out, not that there aren’t occasional lapses, and there’s a real sense of common purpose—this dozen people call themselves TeamBrooke and work that way.  Meanwhile, we’ve acquired five new bird feeders that are placed strategically right outside our big living room windows, and we are seeing junkos, finches, house sparrows, chickadees, goldfinches, and a redheaded downy woodpecker who is working singlehandedly through a big hunk of suet.   We’ve  been adopted by a big, sleek, gray cat, who comes to sit on the railing of the deck near the birdfeeders but as far as we know is still emptyhanded.   Brooke is graduating from the home care company’s therapists and moving on to outpatient treatment, in particular physical therapy at Neuroworx and occupational therapy at the University of Utah—both excellent programs.  (He’s going for intake evaluations this week.)  There are little delights: our trusted auto mechanics at our local gas station, who’ve serviced our ancient Honda and Isuzu for many years, are also game to take on our giant accessible van, even though it can barely squeeze into their service bays.   We went to a blues concert a week ago, held in a Unitarian church; we knew all the players in the band, Better With the Blues, including our pediatrician friend who played Amazing Grace for Brooke on his first outside excursion when he was still in the IMCU at University Hospital—there’s a picture of Lou with his harmonica and Brooke in the Cadillac chair, in the parking lot of the hospital, two years ago, only a couple of weeks after the accident.   There’s been talk of a documentary about Brooke.    A group of Honors students is coming to have a class with him.  Physically and psychologically he is improving steadily—almost no more anxiety, depression just in very short episodes, less disorientation and confusion, increasing intellectual alertness, and a much greater sense of wellbeing and direction—plus continuing physical gains, including muscle activity in both legs and both arms, even both hands and both feet.  There’s some muscle activity virtually everywhere, though it wouldn’t count as function yet, but it does give one a sense of purpose and involvement.   He’s moved from the 16 breaths-per-minute pacer to one with an 18 bpmsetting for most of the day.  He can carry on longer and longer conversations, virtually all day.   We haven’t been focusing on breathing off the pacer, but he can do it, and did it for a casual hour just yesterday—while doing his speech exercises, demanding enough in themselves.   A good friend is teaching him Dragon Naturally Speaking, going about it in the most thorough of possible ways—researching whether the PC version or the Mac version is better, what all the shortcuts are and what the underlying architecture is.    After two years of being unable to read anything on his own, he can now scroll through a play like the Winter’s Tale at his own speed, pausing over Shakespeare’s extraordinarily difficult language.   Meanwhile, there’s way better bladder control.    Brooke is even starting to cook again, at least in the sense that he’ll roll into the kitchen and direct folks in how to make whatever’s in his mind—there are a lot of willing sous-chefs whose hands do the work while Brooke does the culinary thinking.    (By the way, we hope you’ll come and cook with Brooke—just bring whatever you like to make and make it together with Brooke while you’re here--)  Of course there are sharp points of anguish:  pain, of course, from time to time.  The sharp-shinned hawk that swooped down on a terrorized finch at the feeder the other day, and tore it to shreds as Brooke and his caregiver watched.  More painfully, Roger, our friend with ALS who visited us frequently while Brooke was still at South Davis, has died: he suffered through many similar stages of paralysis and loss of function as Brooke, but he was going downhill, Brooke slowly up.  We miss Roger tremendously, and it is hard, when your own life is difficult, to see someone for whom it is worse.

            But Roger’s pain is over now, and Brooke’s is improving.  Brooke’s gaining strength both physically and mentally, and though we have also been exploring the darker sides of loss, being at home is good.   Besides, he lifted his left leg at the knee a full three inches off the bed today—that’s against gravity—and has done as many as 200 arm pulls on the railing at the side of bed.    We’ve always known that progress was slow, but this is progress again, even after all this time. 

           

 

 

 

Mourning

Loss.   It’s quite a difficult period, coming home, and even though I’ve been home over a month, it’s still difficult.   It makes you reflect on loss, and the hope of gain.  Think of things like Matthew:  you have to lose yourself in order to find God.  Or The Winter’s Tale:  there’s Perdita, the lost daughter, found, or the ending of The Tempest, Gonzalo’s speech on losing and finding.  Or Thoreau, in the Walden chapter “The Village,” it’s not until we are lost, that is to say, turned around, that we discover ourselves and the infinite extent of our relations.  They’re all about loss.   Of course I’ve gained a lot in coming home, but the sense of pervasive loss is still acutely real. I’m mourning, you might say.

 

            From Laplanche and Pontalis, The Language of Psychoanalysis, entry “The Work of Mourning”:  Intrapsychic process, occurring after the loss of a loved object, whereby the subject gradually manages to detach himself from this object.

 

Freud’s thesis in Mourning and Melancholia is that the work of mourning involves detachment, a decathexis, a severing, from the object that is gone, the person who has left or died.  That’s a very painful process: it involves remembering; it involves periods of depression.  But in that healthy work of mourning you do eventually detach yourself and find another attachment, another person or another work in life.   Think about people who are losing their jobs, or having their homes taken away in foreclosure, or are alienated from their kids, or who are enduring losses in so many other multitudinous ways.  There’s loss everywhere, and mourning, too, though many people who are mourning loss will eventually begin to detach themselves from what they’ve lost and go on to something else. 

 

Of course, there are many warm, welcoming, even exciting things about coming home.  I’ve been making very real progress in breathing, in coughing (extremely important for respiratory health!), physical therapy, arm and hand function, speech, bladder control, and more.  It’s extremely energizing and hopeful.   Peggy and my various caregivers are always devising new exercises, like flexing what I can of my forearm muscles when I’m being turned in bed. I have a fabulous PT homecare person who is doing work with my trunk muscles (where earlier PTs had said I’d never have any trunk strength at all), and who devises very clever ways of getting the most strength from my legs as well.  The OT works relentlessly with my hands, and is preparing me to be able to use an iPad, at least to turn the pages of a book—this way I could read a book, instead of having it read to me.  But alongside all this excitement about my much more rapid progress now that I’m home, there’s still the underlying sense of loss and the everpresence of continuing mourning. 

That’s one of the reasons it’s hard to come home.  For someone who has lost function as I have, and there are millions of us, it involves something similar to but not quite the same as mourning for a lost object, a dead object, but here the lost object in the case of someone who has lost function is an important part of his or her self—or at least the illusion of his or her self, an illusion of selfhood that of course sustains you.   Returning to one’s home involves multiple, multiple, multiple reminders of what one has lost.  The ability to cook.  The ability to get out of bed and walk around.  The ability to turn lights on or off.  The ability to clean up the garden.  The ability to hug someone.  The ability to do almost everything that involves physical activity.  This is why a wheelchair like mine is such a blessing, even if it looks so forbidding to the rest of you, because it makes at least some of these things possible—moving around, at least.  The ability to go for a walk—at least I can motor around through the graveyard near our home.    Just the same, I no longer have the ability to do almost all ordinary activities.  Our friend D., who also had a spinal cord injury, told a story of driving with his wife and seeing someone mowing a lawn: he burst into tears.  According to D., his wife’s consternation, why are you crying? was so obvious, but so was his answer, I’ll never be able to do that again.  

According to Freud, that crying would be therapeutic, part of the process of working through what it meant to have a spinal cord injury. There’s grief underneath the surface.  There’s got to be grief for you, my friends and family, too; part of me has died.    It’s just hitting home, though we’ve been talking about it before; that’s partly why I’m so confused and anxious; I realize now how much of my self I’ve lost.   Of course that’s seemed obvious for the past two years; but it’s really hitting home now. 

            On the one hand, Freud says, there is healthy or natural mourning, that involves the full experience of grief for the lost object, especially bringing up memories of the lost object.    I have many, many memories now of the times when my body functioned; they’re around me all the time now that I’m at home—replacing a light bulb or cleaning up the garden or pruning our big grapevine, which we’ve always done during the January thaw.   There’s always mourning, even though I’m also elated in trying to get some physical sensation and motor function back, recognizing that you can get things back, even this long after the injury. What’s curious is that you can have two seemingly incompatible experiences at the same time, an intense, driving will to live on and keep working for physical as well as emotional and social-contact improvement, and a deep, inconsolable mourning for what’s gone.

 Freud also recognizes pathological mourning, which he says occurs when the subject holds himself responsible for the death that has occurred, or denies it, or believes that he is influenced or possessed by the dead person, and so on.  Here’s where the Lama’s advice is so important, don’t ask why the accident happened; otherwise you get all tied up in self-blame.  It would be easy to be crazy about this, pathological:  did I do something to deserve this fate? Why me, God?  Job’s comforters, as we mentioned earlier, had lots of these answers:  we’re all sinners; you deserved it; you must have done something wrong.  But once you go down that road you never get out of that box, the retreat to self-blame.   

The more central issue is why exactly one finds oneself crying, either inside or outside, for all the things that home reminds you of—of course you’re crying about the lost object, that part of yourself that is gone, essentially much of what you were, if what one is is partly a function of what one is able to do.   That partly explains why you cry, and also what antidotes there are—that’s in part the role of teaching for me, it’s a way of somehow doing something constructive with what you’ve got left, which may, in fact, if you work through the mourning process, involve a finding of oneself in a different way.  There are new connections, for instance:  Certainly I would not have said there are millions of us until I became one of us, and that’s why a place like Neuroworx, a genuinely forward-thinking outpatient rehab facility, is so important for people, because those people are discovering others they knew nothing about.  Who among able-bodied people has disabled people much on their radar screen?  Only a few, I think.

            Freud also differentiates normal mourning and pathological mourning from melancholia, where the ego identifies with the lost object.  But this is in a way the biggest challenge in my situation:  after all, what’s lost was me, my body and my capacities for activity;  why wouldn’t the ego identify with these things?  So is it possible to do normal mourning, “healthy” mourning, when after all you can’t really separate yourself from the lost object: that lost object is (was) after all you.

Here’s where the advice of the Lama has been so relevant, when he came to visit me in the hospital not long after the accident: the body is nothing; the mind is everything.   As you may remember, it was tremendously consoling at the time.  If I could still believe it fully, mourning and melancholia wouldn’t be a problem.  I try; but it is hard to lose one’s body, even if you still have your mind. 

 

Meanwhile, Peggy has been facing loss too, over these last two years and of course continuing on now.  She says she’d been looking idly while staring at her computer at the Nature Conservancy’s website of Best Nature Photos of 2010; almost all of them are taken in kinds of places we’ve been, but won’t be going to again.  And she confesses that she has a secret stash of some of the many travel and trek brochures that come in through the mail: glossy brochures with photos of mountain ranges in Chile, Buddhist temples in Cambodia, picturesque medieval villages in France and Italy.

Is this about loss?  Is this about the anguish of not being able to go there anymore, at least not as the couple we once were?  We can’t; that’s a simple fact, and if we were to try to do so it would be so encumbered with equipment and backup precautions it would hardly be worth the effort, and in any case we would have lost the spontaneity we once enjoyed.  After all, I think we narrated earlier, when we first knew each other we’d sometimes just put our sleeping bags and backpacking gear in the car and drive out to the main highway, and then  decide whether to turn left or right, south or north, then west or east after that.  There are wonderful mountain ranges in every direction from Salt Lake City, so it didn’t make any difference which way we went.  The deliciousness of complete spontaneity was always part of the pleasure.

We can’t do that anymore.  So what, Peggy says.  Someone whose wisdom she’s come to admire said awhile ago, about all those places like mountain ranges in Chile, Buddhist temples in Cambodia, and medieval villages in France,  well, after all, you’ve already done that. You’ve already been there.

It takes a long time for this to sink in.  You can’t do it in the future; but you’ve done it in the past, when you were whole.  Do these somehow cancel out?  Does the fact that you can’t do it in the future anymore somehow weigh more than your past experience, no matter how pleasurable and intense that was?  That’s after all over, gone.  Or is it that we should value what we’ve done in the past more than what we might do in the future, given that we never really know what the future will bring and given also that past experience lives longer with us than future experience will, since future experience occurs closer to our own deaths.  Or should we weigh them equally, our pasts and our futures?  Traditional philosophical puzzles like this become much more real in a situation like losing your body, but of course they’re also part of ordinary aging, of living through time.  So we’re not alone at all in confronting issues like this; they just seem more acute when you realize not just that you can’t do much of anything anymore but that you can’t recover from mourning for your lost self in any of the usual, healthy ways, by detaching from that and going on to something else.

Peggy says she doesn’t keep the secret stash of travel brochures because she wants to go there, but to remind her of what it’s like not minding not being able to go there, the positive side of not needing to anymore. 

 

 

 

 

 

 

 

 

From Institution to Home

We’ve been home now for nearly a month, and it might be worth relating some of the details of life here, since we’ve finally settled down so to speak to a kind of daily rhythm—or at least are beginning to settle down to a life which involves daily care for 24 hours a day, 7 days a week. We’ve rounded up a pretty remarkable staff of people who work shifts, 7 am to 3 pm, or 3 pm to 11 pm, or 11 through the whole night until 7 am—sometimes two at a time, sometimes solo. At the moment, Peggy is here much of the time, though this will change a little when the academic semester begins in January. This staff—about a dozen people, most of them young, includes people we’ve trained, people with backgrounds in nursing, people with training in respiratory therapy, and miscellaneous others, like a philosophy graduate student, a former drywaller, former students of Brooke’s, and other assorted amazing types. The schedule fluctuates from week to week, at least at the moment, stretched across the day from 5:15 in the morning until 10 at night, and of course there are various procedures to be done in the middle of the night as well. What a wonderful collection of people—for the most part, entirely engaged in the project of caring well for Brooke. Of course, we’re aware that this is partly due to the terrible economic conditions in the country, and that some of these people—including those with brand new respiratory-therapist degrees—aren’t finding other jobs. We’re also aware that many of the other entry-level jobs out there or jobs at megafirms and big box stores are pretty inhumane—long hours or more frequently too-short shifts, required standby days without pay, firms unsympathetic to illness, and of course low wages and no benefits. Some of our folks are single parents, or people with educations but no jobs, or people in industries like computers or trades like construction that are collapsing. We don’t want to profit from other people’s miseries but we’re aware that working with Brooke, as strenuous and physically demanding as that might be, can be a haven of genuine human concern in an often bleak economic world.

Brooke’s schedule is for the most part much like that at South Davis, except that he is in the wheelchair, rather than in bed, for as much as twelve hours instead of just two or three hours a day—this is very good for circulation, breathing, and overall health. At this point, we have a home care company which temporarily supplies a nurse and three therapists—a physical therapist, an occupational therapist, and a speech therapist, not to mention the shower aide, who come to the house at various intervals during the day. They’re part of the great network of home health care workers who drive huge distances all over the valley, living much of their lives in their cars, another indication of the economic challenges of the times and the poor infrastructure of our health care system that provides home care largely on a temporary, intermittent basis as well as the sprawling nature of American life.

At last, Brooke's at home; that’s the important thing, even though this too has enormous financial impact: we’ll need to personally employ the equivalent of between four and seven fulltime workers to get single and often double coverage 24/7. But it’s time that’s really the issue: time for Brooke’s own interests, time for Peggy’s projects, time for both of us together. At first, we thought we’d have longer blocks of time together, but so far it isn’t working quite that way. At South Davis, Brooke regularly had long stretches of time by himself, in between procedures and checks by the nursing staff—those checks were always done quite efficiently and, unfortunately, without much relaxed time for chatting and talking. Now, it’s quite the other way around—our staff seems relaxed, at home, glad to be working together, but it involves way more time, way more talking, way more at-homeness than the efficiencies required by a cost-conscious hospital environment. So far Brooke’s days have been filled with therapy sessions and the usual routines of cough assist, cathing, bathing, medications, and so on that have to be done on a crushingly regular basis, and Peggy’s days have been filled with the demands of organizing the staff, the supplies, the vendors of equipment and services, the social calendar, and making sure that things run as smoothly as possible, easier said than done. At South Davis, Brooke, who spent about 20 to 22 hours a day in bed, was able to listen to thirty or forty books on tape (nearly all of them books about various periods of history—European, American, Chinese, Native American, Russian, and so on, trying to put the dots together, as he says); now, he’s lucky if he is able to squeeze in an hour or so of listening, a great deprivation. Those books on tape provided a good deal of his intellectual stimulation—that and his various visitors—but a day without them now is way less full, even if stuffed with medical care and staff interactions of all sorts. Yesterday, however, with a little time before dinner, he started to watch his second film—that is, only the second one he’s had time for in a whole month. If you’ve been imagining that his day is spent parked in front of the TV because there isn’t anything else he can do, you’re wrong. A huge amount of his time is spent in nursing care—though we’re gradually getting more proficient in this.

The house itself has finally attained some degree of normalcy. Brooke’s bedroom has some of his favorite etchings on the wall facing his bed, and two beautiful woven hangings on other walls, not to mention that photograph of the Buddha he took at a temple in Myanmar about five years ago, which we mentioned in an earlier blog—the photograph that got him through so much of the really hard times during his vent-weaning periods. The living room has been rearranged to open it up and make room for Brooke’s massive powerchair; he can turn on a dime in it and park facing out into the garden, even driving around the Christmas tree, left from when our daughter Sara and her family visited over the holidays. The renovations that were made while Brooke was at South Davis now somehow seem a natural part of the house: the new front door, widened for the wheelchair; the kitchen remodeled to accommodate the wheelchair; the carpet replaced with one with lower pile so that the wheelchair could drive well on it; the French doors wide enough for the wheelchair to go out onto the deck; the new, enlarged, sturdier deck itself that had to be raised to allow the wheelchair to drive out onto it; the windows replaced in the room next to the bedroom so that there’d be more light; the microoffice converted from a closet that provides a place for attending to the financial aspects of Brooke’s care and other bills and records; the ceiling lift in the bedroom; the decking in the shower for the shower chair, the one fashioned out of a lawn chair and casters; the upstairs room that is Peggy’s retreat; the “green room” as we’re calling it that is intended for Brooke’s caregivers to hang out in so that they’re not underfoot when he’s got other guests or just needs some privacy and tranquility; the modified sidewalk and front porch that allows Brooke to drive up to the house in the wheelchair; the driveway pan that allows us to park the van with room for the lift to function; and more. Despite all this, it’s still home—but with a little touch of memory from South Davis: the kitchen, the microoffice, the green room, and Peggy’s upstairs lair are all partly painted in the same mocha color that was in Brooke’s room at South Davis, a color he lived with for almost two years and never got tired of.

We always assumed that Brooke’s stay at South Davis would come to an end—that he’d leave there at some point, and that, we hoped, he’d come home. What is so scary to him, he said several days ago, is that he is at home, and what that involves. It’s about what the future will bring. It’s all scary to me, he said. I’m frightened, he said. Daily living is hard. Having people around 24 hours a day is hard. It’s the reality of home life that will demand a whole new relationship between Peggy and me, or rather a different kind of relationship. I’m very scared that I won’t be able to bring it off somehow. I mean, this will come to an end too. Well, he said, this is not Buddhist at all. “Living from moment to moment”--I’ve lost that somehow. I’m scared of the imaginary future and what will happen to us, and what it will be like for the two of us to live together in this situation. For example, we’re separated at night—I’m downstairs in my hospital bed, which more or less fills the bedroom, and Peggy has to sleep upstairs in the room she’s prepared for herself. Of course, we’re just beginning; we haven’t really gotten into any kind of fully satisfactory rhythm yet. Everyone said the first couple of months would be the hardest—here we are at one month, just about, and things are getting easier, but they’re far from easy altogether.

But there are positive moments: for example, I decided to come out of my room in the wheelchair yesterday morning and do one-on-one, off pacer, because I thought, this is a good positive start for the day. Then we had a wonderful dinner together, just the two of us, while the care person was in the back room, the “green room,” allowing us some privacy. This was the first dinner like this we’ve had, just the two of us. Just the same, I worried, you have to feed me—how will it sort itself out? I know I’m just being neurotic about this, he said, this life at home will have an end, either in my death or yours, or I may end up in an institution again—a lot of the kind of heroic life I imagined for myself hasn’t happened yet. Instead, we squabbled a bit over stupid little things, just the way couples do; perhaps this is also part of coming home. Now, in my anxiety, it seems we won’t have the time or energy to do anything constructive, only just to get through the health-care stuff. It’s so hard to be disabled like this, in this state, in this chair; I know I’m wrongheaded about it, but it’s also hard to know exactly what I’m wrongheaded about. Even though we’re beginning a urinary-control program, for example, I still feel that enormous dependency, even in trying to achieve something as elementary as taking a voluntary pee, and the feeling of total helplessness is sometimes utterly overwhelming.

Anyway, I’m scared. You know, Peggy, you’re the primary caregiver, that’s because, as someone said, you’re here all the time. Will you resent that in the end? Will my condition really be something that holds you back? I don’t know what I’m going to do. So at the moment home life to me seems fraught with difficulties, despite the fact that our caregiving team is coming together and starting to work really well. When I’m with B. and D. and L. and you, for example, talking about Sir Gawain and the Green Knight, I can’t keep up my end of the conversation very well. Is it the physical distance the big powerchair imposes? Is it the weird sound of my voice? Is it the slowness with which I speak, partly a function of what the diaphragm pacer allows, that gets in the way? It’s hard to talk fast on the pacer, and it’s hard to be quickwitted when you can’t talk fast. Is it just that my mind works more slowly, or is it that my body works more slowly and can’t express what my mind wants to say? My sister used a good analogy: when she was with her husband in France and he was just learning French almost from scratch, though she was already fluent, he always felt he couldn’t keep up at dinner parties. He couldn’t tell jokes. He always went home in despair, that his thoughts were going faster than his mouth could express them. It’s the sense of humor and the appreciation and expression of humor that is most lost. I still haven’t gotten used to being in this physical situation fully and the way it affects communication; mentally, I’m the person I always was, but the two things don’t connect so easily.

Other people relate to me differently too, or I interpret what they say differently or misinterpret their looks. I’m comfortable with the people who’ve been around a lot over the last two years, and for them the wheelchair and the paralysis is just normal now, but for some other people I’m aware that these things make them uncomfortable. I'm sorry; I wish I could make it easier for them, easier for them to come to our home. It’s so different from what I imagined it would be like.

That was last week. We’ve been trying to write this blog for a long time, but in the comparative chaos of reentry into home, we just haven’t managed. Now it’s:

New Year’s Eve: We’ve decided what we want to give each other for an anniversary present—it’s our 25^th anniversary tomorrow, January 1, 2011. Brooke still requires a hospital bed, but we want to get a wider one. Of course, the insurance will only pay for a narrow, single width bed, albeit longer, but because he doesn’t weigh more than a normal-weight person, they won’t provide a bariatric one. So we’ll just get one—this is about marital intimacy, even if that means something different in the context of near total paralysis, proximity is still of paramount importance. And as the song goes, a kiss is still a kiss, even as time goes by.

New Year’s Day: Here it is, a new year, a new decade, and also our anniversary. Imagine, 25 years, plus the 10 years we lived together before that. In total, that’s more than a third of a century. In the wedding ceremony we wrote when we got married, we never made any of the conventional promises, like love, honor, obey: love didn’t need to be promised, since it was already there, and in any case can’t be promised for the future; obedience on the other hand was out of the question. Nor did we recite that traditional line about “in sickness and in health.” Brooke’s injury is you could say a form of non-health, but we’re still here together, whether we promised it or not.

We’ve been making New Year’s resolutions: Brooke, for instance, resolves to learn how to embrace pain. Peggy resolves to learn how to relax with having a lot of people around all the time; she’s starting to enjoy it. She also resolves (though she does this almost every year) to get rid of all the piles of papers and other stuff that’s around the house, since that is now so much more in Brooke’s way. He’d said, When I first got here, for awhile the place was reasonably empty and that made me happy, but now there are chairs and stuff everywhere and I can’t move around among them—I wish you’d resolve to do something with them. I can’t move them; I’m helpless, and I can’t move them. So she resolves to keep the place cleaned up and really spare, and furthermore to welcome being nagged about this. Brooke meanwhile talks about further adapting to the situation we’re in—this might seem like a pretty abstract New Year’s resolution, but it has many details. And there are many positives of being at home: The sense of freedom is much much greater—we can manipulate the schedule, pare down the medications, experiment with off-pacer time and physical therapy, cook our own foods, choose our own bath times, bed times, cath times, etc. and in general design our own lives, even despite the realities of Brooke’s physical needs. And the improvement in Brooke’s condition since he’s been home is so great—better breathing, better movement when he’s doing physical therapy, more sensation, better voice, less pain, decreasing anxiety, better general health. And he spent over an hour today off the diaphragm pacer, just breathing as his normal self.

Must be that the initial terror of being at home is starting to turn around—for all of us.

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.