Thursday, March 31, 2011

Recovery in a House of Love

Brooke returned from University Hospital in the middle of the afternoon a week ago—a relief to get out, he said, although he also said at the end of his stay that it had been by far the best place to be.  The next day was his 69th birthday, and although his sister had knit him an elegant scarf, it was a birthday we could only celebrate in the most minimal way.  Too much respiratory challenge; too much working with the home IV antibiotics; even too much oxygen around the house to have any birthday candles.  Our daughter Sara was here, a wonderful support, but even with her and her calming presence recovery from pneumonia (which is what Brooke’s problem turned out to be) is agonizingly slow.   Your need a lot of rest to recover from pneumonia, and Brooke hadn’t been getting it over the weekend; it was too exciting to be home again. 


            On the roughest of the days after he was home, Brooke was extraordinarily short of breath and could hardly sit up to eat.  He had to go back on oxygen during the day, not just at night.  In addition, he’d been still seriously troubled with a painful leg, pain that moves between his hip and his knee, apparently due to a muscle that knots on the backside of his thigh and old trigger-points and injuries that reactivate as his leg muscles become more active.  We don’t mean to be complaining here about how difficult and slow recovery can be, since after all it is recovery.   Pneumonia for someone with Brooke’s challenges is a real risk, something we have to take seriously.  Part of recovery involves understanding how important it is to rest, but more than that it’s about  treating one’s own body in a way that balances the need for rest against the need for activity. 


But today, he’s feeling better: he needs less oxygen; he’s obviously stronger, and he can eat in the normal, sitting-up way.  To be sure, he’s got a huge amount of pain going on, but he’s often able to ignore this, so much experience has he had over the past two years with pain.  But perhaps the most difficult part is the psychological pain of setback: he’d come so far at Neuroworx, working on trunk strength and in the pool, but after this period of inactivity it seems that he has slipped back many steps in the process of getting stronger.   Of course, he’s had pneumonia before, twice in fact since the pacer was installed, and one of those times very severe, much worse than this one.  It is sometimes hard to remember that one has gone through the same pattern of experience  before; doing well, sailing along, then blam! blam! Blam! Pneumonia again.  Not to be melodramatic, but it’s blam, and it seems, at death’s door. 


            But now it’s the beginning of April, the barely observed birthday is over, it’s spring, and things are beginning to look up.  Crocuses are coming up in the yard. Ironically, it’s the leg pain, unrelated to everything else except perhaps positioning in the wheelchair, that is the most agonizing—and it is agonizing, though it doesn’t occur every day. Then there’s discovering and holding onto the notion that there’s some pattern—you go through something like pneumonia, but each time, you go through a very long period of recovery, longer than the disease itself; but recognizing the pattern actually helps.   There is one huge compensation, however, and that is that we now live in a house full of love.


            A house full of love?  This phrase just slipped out on that worst of days after Brooke had come home when he was talking with his psychiatrist friend; they were talking about home life, and this phrase just formed in Brooke’s mind he said and slipped out before he even could think about it.    But consider: we have twelve people helping us, our various employees; they work in shifts of greater or lesser extent; they’re here around the clock, 24/7.  Some of them have known one another in different contexts—they’ve been classmates in respiratory therapy school, or classmates in nursing school, or in high school, or are friends of friends, and some are folks we just chanced to meet in some inexplicably random but fortuitous way.   But they’ve been coming together as a team, and even though they aren’t all here at the same time, they overlap in shifts or do double shifts or trade off with one another, and the night people meet the daytime people when they change shifts at 7 am.   They also meet each other at the all-staff inservices we have every six weeks or so to consolidate the training the staff has in all the aspects of Brooke’s care.  They’ve come to know each other; they help each other; some cook together; sometimes they bring their dogs; they begin to care about each other; and not only does one of them already live just across the street but another is moving into a house she’s renting just two doors up.   The little frictions that sometimes form among all these people with their different ways of doing things, which emerged after the honeymoon when Brooke was first home was over, have been dissipating, and they now form a sort of community, a kind of extended family, a sort of village one might say, engaged in care for Brooke.   They support each other in their growing affection—that’s the only thing you can call it—for Brooke.



With this pneumonia, Brooke’s been pretty sick.  The irony is that the harder things are for Brooke, the more palpable this sense of love among the caretakers becomes.  And it’s not just the caretakers, Brooke says, but all the friends who come to talk, or read, or just sit.   Some have done so for the past two-plus years.  Some come to work on computers, or to help with e-mail.   Some come to read poetry, or plant flowers, or help me think about my upcoming course on the Iliad.   This reinforcement really helps to keep one alive. 


What would happen if I were this sick and there weren’t such reinforcement, asks Peggy.  (She’s always asking these probing questions.)  I don’t know, says Brooke, I have no idea, maybe I would have to try to starve myself, though they’d try to keep me alive; but I know I couldn’t stand it without this reinforcement.  I couldn’t stand it.    But then I couldn’t have gotten this far without all the support I’ve gotten over the past two and a half years—I feel obligated to keep living, in a way, aside from the will to live.    I don’t honestly believe that that will would be strong enough to counter the pain, if there weren’t such support.    The loneliness would be overpowering; I’d have to have a level of religious belief or something like that to survive, if I didn’t have these real people and their love with me; I’d have to have some kind of religious belief to go it alone, because the pain is sometimes really unbearable. I’d need more than what I’ve got, if I didn’t have these caregivers and these friends and my wife and family too. 


A day later, Brooke continues, I’ve been having a few thoughts about what it would be like to go through this absolutely alone, as many people in fact do.   To be really alone doing this, you’d have to be in a hospital in Moscow, say, or some very distant and alien place where you couldn’t speak the language.  But I think I’d have to believe in Heaven or some other dimension of reality, where I didn’t have any right to let go of my life if I couldn’t stand it anymore; not being even able to do that would be the negative part.  You’d have to believe in some place where going through this would be rewarded in some way.  Because not to have people around who really cared about you you’d have to dig so deep, it’s hard to imagine how that would be possible.   Of course, there are people who live in solitary confinement for years, like Robbin Island or Insein Prison or hellholes everywhere in the world, where they’re beaten and tortured every day with no hope of escape; these people are genuine heroes, and it’s beyond my capacity to imagine what they go through.  Compared to their existence, mine seems rich.  After all,   what’s actually going on here, though I’ve been for the most part confined to the house while I’m still recovering,  is a pretty extraordinary phenomenon, and it does compensate in some measure for the paralysis and pain that I experience on a daily basis. I see so much growth and change in the people around me who form our staff, much of it from contact with each other as well as from contact with somebody in a compromised situation like me--all of it for the better.  I find them all interesting; I care about them too.  Imagine, a house full of love.  How many ordinary people live in houses like this, where you can almost feel it in the walls?   Of course it isn’t like this all the time, sometimes it’s just ordinary everyday, and working here taking care of me is just a job, but especially right now while I’m still recovering from this pneumonia I can really feel what this ubiquitous care, this emerging love, does for me and for us all.







Wednesday, March 23, 2011

Homeward Bound: A Moment of Radiance

  Three nights of extremely vivid dreaming, about walking, bicycling, rowing, swimming underwater, sculling; I saw some people and behind them was a magnificent shooting star, absolutely unbelievable, it came out right behind them.  I’ve had sex dreams.  I’ve had dreams about going back to Harvard.  I’ve been thinking about Jesus, about the miracle of getting the paralyzed man to stand up and walk.   So despite our rather dour communication of a few days ago, talking about confinement in an institution, this hospital stay has been very therapeutic, especially now that my pneumonia is under control.  One of the characteristics of the therapy has been these three nights of vivid, vivid dreaming.

            Did they give me any special drugs?  Apparently not.  Maybe being on the ventilator at night is responsible, I don’t know; or maybe it’s just a matter of further development in dealing with my condition.

            In the first dream, I was a character in a Thomas Hardy novel, dreaming in color, like Tess of the D’Urbervilles, four people being exploited by having to pick corn; all the colors were muted reds and browns, and then in the same dream I was getting ready for my freshman year at Harvard, free of all my adolescent neuroses, free of all neurotic romantic attachments; but then I started to wake up and realize I was paralyzed and I didn’t know how to register for my courses; and then I awoke fully into my paralyzed state, which is always something of a downer—though I’m smiling at the moment, even laughing, as I narrate this dream.    There were many other aspects to this dream, like finding paths near lakes and finding new ways of getting into the mountains on your own, and then showing them to other people.  All the grass was high and green.  (This is an example of what Freud called secondary revision, revision that goes on when you tell your dreams.   They’re not what you saw, and they’re not what you experienced in the dream itself, which nevertheless still remains vivid in your consciousness but can’t be put into words.)  In the second dream, the next night, I dreamt that I had found myself in a resort on the Chesapeake Bay (of course, I don’t know whether there are any resorts on the Chesapeake Bay, we only know scruffy half-forgotten places like Smith Island that are nevertheless wonderful) that had a terrific boathouse full of  beautiful single sculls.  I took one out on the bay, which was completely placid, and I rowed rhythmically and flawlessly through this placid water.  Then I was on a sailboat, and had to discover where the anchor was, so I swam without any scuba equipment under the water and looked up at the sky above. I thought to myself, if I had to die, I’d be happy to die in this calm place, under the water.   This is another example of secondary revision, since the dream had many more elements than that and I’ve only selectively remembered some; it included being with a woman who had the most beautiful legs I’ve ever seen, and I watched her shave them.    Then the third night I had other dreams about rowing and also about bicycling.  All these I was able to do by myself; I wasn’t paralyzed at all.   In that dream, I saw a couple in the distance at night, standing against the dark sky, and then suddenly a shooting star burst in the sky and went sailing down until it finally disappeared.   There were many other aspects to this dream as well which I can’t recall now, but were equally vivid.   I kept thinking afterwards that there must be something in the atmosphere of this hospital room that was inducing these dreams.  I also found myself reflecting on the miracle told in the New Testament about Jesus, who says to the paralyzed man, something to the effect of Rise up and walk.    And the man rises up and walks.   I also dreamt about giving a sermon based on this text at the Unitarian Church, but I don’t know where Jesus is right now.  I wish he were here, although I know the dream, or rather the miracle, the story in the New Testament, needs to be interpreted as something about having faith and that the rising up is really a spiritual rising up rather than a physical one.  But there must have been eyewitnesses to this; I want to believe this miracle, that I really can rise up and walk, despite the fact that I can’t feel either of my feet very much.  Maybe I’ll be able to do it some day, if I have enough faith and perseverance.    I’d love to be able show that it can be done.  This is a mood of optimism, some kind of deep creative optimism, the mind, the psyche, the unconscious, pushing pushing pushing, trying trying trying to blossom.  Open up.  To awaken the body.  To put it back together again.  All of these thoughts I’m having right now, as I dictate this to Peggy; it’s a happy moment, a moment I’d like to hold onto for a long time.  The happiest moment I’ve experienced in the last two and a half years, although Peggy says she doesn’t know about that.   I would say that if people could see me now, they’d see that my eyes are bright with joy.  Oddly, it’s the conjecture about the possibility of rising up, rather than any actuality, that’s bringing me joy.  And all this just two days before my birthday, my 69th birthday—how could I possibly be 69?  I can see my hair reflected in the window and it’s gray.    Amazing, isn’t it, how the mind can be independent of the body; maybe this is an example of how you can speak yourself into joy if you let the inhibitions go, the repressions, that part of you that won’t really let joy express itself. 


            Is it crazy to have dreams like this, fantasies like this, thoughts about miracles, and maybe even crazier to tell them to people?  Is it evidence that I haven’t “adjusted” to my paralysis?  I don’t think so; I think it’s just the other way around, that the fact that I can have these dreams and can acknowledge them as part of my new emotional life is a healthy thing.  I’m dreaming about events in my past life, embellished of course, just the way ordinary people dream about embellished versions of stuff that’s happened in their own lives too.   William Blake has an idea that we have a “shadow” in us, in our psyche, that battles against this visionary gift, and that the shadow must be seen as just what the word implies, a shadow which only exists if you believe it exists.  In these visionary moments, the shadow is defeated, it’s blown away by the wind of the visionary imagination.  That’s a powerful thing; it’s what I’ve been trying to describe here.


                                                            *   *   *


            We started our conversation this evening with my saying that there are sounds in this room, the sounds of little alarms and the whisper of the compressor for the airbed and background noise from the corridor outside my room that if you’re in the proper mood aren’t irritating at all, but can be enjoyed in the way that John Cage invites you to enjoy the random beauty of the sounds around you that make a kind of natural symphony.   If you are calm enough, this place is not confining at all.

            I’m being discharged to home in the morning.

Monday, March 21, 2011

The Paralysis of Being in an Institution

            Last Friday one of our home respiratory therapists reported that Brooke had diminished breath sounds on the left side of his lungs; this followed a particularly rough night—lots of secretions, lots of suctioning, difficulty breathing, and during the night he went back on the ventilator—for the first time in at least five months.   So off we went to the University Hospital for a chest x-ray and then down to the spinal cord clinic to see the doctor.   The x-ray seemed to show a small pneumonia, and then the issue was whether to try to treat it at home or to be admitted as an inpatient. 


The back-and-forth nature of the way we made the decision about whether to go to the hospital is instructive, especially about the roles of autonomy, paternalism, and population-based information in modern medicine.   As the first doctor framed it, speaking softly, it’s your choice: either go home or be in the hospital, and he explained something about what was involved either way: there are pros and cons to each, and it’s possible to run the antibiotics at home but of course more support is available at the hospital.  The second doctor, speaking far more loudly and observing that Brooke didn’t look very well, warned almost coercively about the horrifying risks of not being in the hospital: you could have a plug.  You could have a clot.  Your blood pressure could drop; you could die.  The third person, a nurse, said the thing that made the biggest difference: quads go down faster than other people. 


            So, after considerable delays while a bed in an ICU was being located, Brooke spent a first night in the Neuro Critical Care Unit, and then the next day was transferred back to familiar territory—the IMCU, the intermediate care unit Brooke was in the last time he was hospitalized.  We’re seeing some familiar faces among the nurses and respiratory therapists, but also remembering the rather traumatic time he had the last time he was here, in late November or December, with a quite serious pneumonia.


            So what’s the diagnosis this time?  Pneumonia again?  Or could it be that the diaphragmatic pacer isn’t working right, and that’s why there are inactive areas in the lower left lobe of the lungs?  It is astonishing to transition from what we realize is the comparative quiet of home to a high-tech hospital:  in his room there are multiple sources of noise, from the loud and constant whirr of the compressor for the low-air-loss mattress on the bed to the sharp, intermittent beeps of the infusion pumps when one or another of the three antibiotics that are hanging runs out.  It’s also astonishing to remember how many people are involved in his care at the hospital, and while our home staff of a dozen seems like a lot, it hardly compares with inpatient medicine.  But more than anything it’s the sense of being in an institution again, with its protocols, its procedures, its received ways of doing things.  Brooke keeps saying, this doesn’t seem quite real.    Sometimes he says that when his degree of alertness is fluctuating with oxygen levels, and sometimes he says it when he’s completely rational and observing every little thing: still, it doesn’t seem quite real.


            It’s not an irrelevant observation.   Ongoing institutional life (on Medicaid) is the lot of most people with an injury like Brooke’s; most families don’t begin to have the resources, financial or emotional, to provide 24/7 skilled care at home.  Brooke is talking now about the relative freedom of home, even if it is of course far more limited than his earlier life at home, and he is saying that he absolutely would not want to die in a hospital.   It’s too noisy, he says, I’d want to die in a quieter place.   It’s too impersonal, he adds, thinking about the professional demeanor so many caregivers adopt—though not all.  Are you thinking about dying? asks the extraordinarily sensitive nurse, alert to any symptom that might suggest trouble is brewing, but Brooke says no, he was just thinking about the difference between hospital and home, the choice we were making just two days about whether to try to face this pneumonia in one place or the other, and the way one of those clinicians had said you could die, something that’s not often said aloud in hospitals.  When it is said in this environment, Brooke acknowledges, it hits you like a bombshell. 


            Fortunately, talk of dying doesn’t seem relevant now.  Brooke was pretty sick yesterday, but today he’s alert again and comfortable, enjoying visitors, and listening to The Iliad on books on tape, preparing for the course he’ll teach this spring.   But he’s tired of lying in bed, and tired of not being able to keep to his own schedule.  One thing that is so terrifying about being in the hospital again, Brooke says, is the way it induces passivity.  Once you’re here, it’s easy to let the institution take you over and make all your choices for you; in fact, it’s almost impossible to resist this.  One of the best things about being at home is that although your movements and general life are severely constricted, you at least have a range of choices and abilities to carry them out, like getting out of bed, moving around in the wheelchair, getting in the van, going places, and so on and so forth.   Having a limited series of choices is by no means ideal, to say the least, but at least you’re your own person.   In the hospital everything is designed in ways that have the no doubt unintended effect of wearing you down, not so far at the moment as what’s been called ICU psychosis, but nevertheless to paralyze you in additional ways, mentally as well as physically.  This is partly due to the way a huge institution like a hospital actually works; it works very slowly, it is beset with regulations and restrictions, and nobody in it seems willing to challenge the system very much.  This is actually quite a good hospital with many wonderful people, and much has been made of the fact that it’s currently ranked first in the nation.  But it’s still an enormous institution, and I’m caught so it seems in the bowels of it.   In part, working on this blog is almost the only way I have of asserting my autonomy here; if it weren’t for this I’d be lying here just watching the television, even more completely passive and unable to do anything at all.


Brooke says he’s already planning his escape from the hospital, hopefully tomorrow or the next day.  He'd do the rest of the antibiotics at home.   This means we can go back to the more usual forms of paralysis that are everyday at home, not just the physical quadriplegia but also paralysis in the face of political and social issues like climate change, energy policy, immigration issues, global health and injustice, and everything else that can keep you awake at night but that it seems almost impossible to reform.




Tuesday, March 8, 2011

Blank Spaces

We’ve tried to end this blog at least twice over the past three months, since Brooke has been home.  We never seemed to get to it.  It took too much time.  We didn’t have anything to say.   Surely you’ve noticed that there’ve been many fewer postings; if you were a reader of something like this, wouldn’t you take two weeks of silence as the end of it, as if the authors had given up?  But that’s not the case--for a whole set of complex reasons we’ve been unable to bow out.  But we’ve tried.  For example, we wrote:

            We keep thinking that it’s an ending.  Perhaps it’s time now to end our work on this blog.  In many ways also this is a sad moment for us, since we have loved writing it, and we are deeply grateful for your participation in it, whether you’re written responses or not  (of course, we loved those).  In fact, we have had to have an audience like you in order to go on writing what we have over the past two years.  But the time has come to have some closure.  Life will go on.  Both of us will continue to develop and hopefully mature in this as Brooke’s recovery to whatever is his “new normal” continues.  But we can’t go on forever with this.


            But we couldn’t do it.  We just couldn’t quit.   Just the same, there’ve been long pauses, gaps, silences.  In a way these gaps represent the difficulty in our getting started in this new life.   There’ve been some high-spirited postings recently, like the visit of Peggy’s nephew and son on the same lively evening, or an account of why eating at home with friends is better than eating at restaurants, but they don’t convey the complexity of what’s really been going on.  It’s about coming home under completely changed circumstances, when coming home was supposed to be the culmination of two years’ seemingly superhuman effort.


Poems have blank spaces.   Think of Wordsworth’s “A slumber did my spirit seal”—they speak.  Usually they are strophic, they take things to another level, another emotional level, you know, like the Ode on Immortality—the voice stops, that’s the way the poem progresses.  That’s the way this piece of writing, this blog, needs to progress, it needs to confess its pain.  


            Brooke says, you’d think when you had a scrotal abcess like the one I had a year or so ago that would really be pain, and it was, but that’s nothing compared to this challenge.  This is a time for a deep emotional sounding, an exploration of the abyss that may lie below the surface.


We both recognize that the hard part is now beginning.  We wanted to end this blog, but couldn’t end it, because something really huge hadn’t been confronted yet.    The strains this whole thing, my accident, my being home, puts on a marriage are unbelievable—even a happy marriage—and digs up stuff one could otherwise live and entire lifetime without ever having to recognize. All of the courage and optimism and determination is somehow undercut by opposites, by terror, by anger, by despair.  This is the shadow that counterbalances the optimism, the shadow that’s been casting itself over our new life, now that we’re finally at home.


This subsurface current of psychic pain has emerged from the shadows in a conversation with two close friends, L. and D..   They just came and brought dinner basically to try to relieve Peggy from all the stress of running what’s essentially a one-bed hospital and let her go to the symphony that was playing that night, but she never went.  They’d written a letter they wanted to post to the blog about how fragile Peggy seemed, how much help she might need to seek, and how perhaps friends could think of bringing by some food now and then so she wouldn’t have to think about the cooking all the time.   But that was two weeks ago, and much has changed since then, both in shadows revealing themselves and in increasing fortitude in facing them.


            It took a conversation with these two friends of very long standing, who’ve been seeing things from the beginning, to get us to open up about what we find really painful to write,, what has surfaced since Brooke has been home.  We started to talk honestly, and even before we got to dinner Brooke had gone into the bedroom to get cathed.   He came back from bedroom and said that while he was being cathed he’d had a really painful breakthrough; he was shaken.  He’d been thinking about people and their lonely marriages.  He said we have a serious, deep problem that we need to confront; we’re in a situation in which we’re lonely together, in the house.  I know, said Peggy.  I want to talk, Brooke said, and I poured out this stuff about being alone together.  That kind of opened up the emotional floodgates.


            But it began more easily:

            How does an outsider deal with your pain? D. had asked.  Presence, Brooke answered.   You weren’t mentioned by name, but you’ve been present at three or four occasions when I had extreme pain.  Even trying to recapture those moments, if you’re not the one suffering that pain—the assumption is that you’ll get through it, there’ll be an end to it, that pain. You stayed and stayed and stayed, There’s a huge amount of love in that, absolutely overwhelming.   Then Brooke remembered something still earlier, when he was first in the hospital and couldn’t talk because he was intubated and then trached but without a speaking valve, he had spelled out something with the alphabet board, to D.; it said I love you.


            Our talking with D. and L. started from there, spun out from there.  We needed them the way you need a therapist, someone you’re close to who understands you and who understands the situation.    That was the setting for our conversation.  Everything grew from that.   We kept saying that the blog will not be beautiful and true, if it can be, unless we try to plumb this abyss, about the coming-home sense of unexpected aloneness.  We suspect it happens to every close couple where one of them has been in a hospital for years and they’ve developed a different way of being together, but they’re both now back where they started—though, of course, in a very different way.


            We tried to explore what ending the blog meant, and we came to recognize that that has been our joint project, our mutual work, the thing we can do together, really together.  Dropping it, even for a couple of weeks, has made us lonely and isolated in ourselves.   It’s as if we couldn’t talk anymore.


Sometimes people write to each other, and write at a very deep, personal level.  There are some legendary correspondences—Keats’ letters to his friends and his family, for example—and some modern practices that make use of the written letter, rather than in-person exchange, to explore deeper feelings and commitment: think of Marriage Encounter, for instance.  But those things involve one person writing to another, and that other person writing back to this one.  But in this blog we haven’t so much been writing to each other; we’ve been writing together, forming what has sometimes been an intertwined duet and sometimes a single voice that speaks out to other people.  It’s been our way of talking.


Though we don’t look backwards much, we remembered a moment when we were reminiscing about the things we used to love to do together, like hiking together and talking.  We always said, let’s go hiking.  We never said, let’s go talking, although the talking part was at least as important as the hiking part.   So while we’ve recognized that we can’t go hiking anymore, we have thought that we could still do talking.  Indeed, talking together was part of almost everything we used to do—so, we said, we haven’t lost all of it. 


            Or at least that’s the way it seemed.  But losing the blog seemed to be losing not just the kind of talking we used to do hiking, but what not only talking together but writing together has made us see.  That isn’t always happy—more on this shortly, the shadow-side of dependency—but just the same important to see.


            Over dinner, D. said, I’ve been thinking about your trying to end the blog, but perhaps there was something artificial about this, the anxiety of ending.  Termination.  Finality.  But this is an ongoing story.   For the space of a quiet dinner at home with these friends, writing together became a four-part voice, itself a new thing.


            D’s right; it is an ongoing story.  We’re not finished.  There’s still stuff we still need to be honest about.   Stuff we don’t have the courage to write down, or, more accurately, stuff we haven’t had the courage to recognize.  This is hard; homecoming was such a goal, something that was the aim for over two years, and while it is wonderful in many respects it is really coming home that makes us face the hardest things, about what a catastrophic injury and radically changed circumstances can mean.


                                                            *   *   *

But. oddly enough, writing this has brought us much closer together again.   Much closer, as if we’d weathered the storm that in fact everyone had said would be on the horizon.

            Perhaps we need this blog for ourselves, as much as we thought we were doing it for you.


Thursday, March 3, 2011

On (Not) Going to Restaurants

Somebody remarked some time ago that maybe Brooke would like to be going out more, for example, to restaurants.  We’ve liked going to restaurants in the past, though usually in other more elegant cities or in exotic foreign places.  We’ve always loved long, talkative meals, good food (at any social level, from street food to fancy establishments), and of course good company.

But we can’t realistically go to restaurants at the moment. Can you imagine not just the enormous gaze-attracting wheelchair rolling into a restaurant with someone who needs to be fed by hand, who may aspirate at any moment and require that the very noisy suction machine be turned on, who has to recline the wheelchair every twenty minutes, and for whom—let’s be realistic—the consternation of the maitre d’ not to mention the other diners would be enormous.  At the very least, we’d be seated in the back somewhere, out of the way, where we wouldn’t disturb anything.   We know this.  Brooke says he’s thought about it a hundred times.

But, fortunately, we can get restaurants to come to us.  Or better.  We can get takeout--for instance, from our local Thai place, pretty good, and there are plenty of others. 

We cook stuff at home:  Peggy operates the hands now, but Brooke is the director.  In all our lives together, Brooke’s been the principal cook.  A really pretty good cook.  Peggy’s been the sous-chef or maybe sometimes just the lucky person on whose plate this fabulous meal would appear.  Brooke cooked Italian food, wonderful pastas (though never French food--too hard to do right); he cooked Indian food; and he went through a several-year-long phase of cooking Chinese food: he started by following trustworthy recipes extremely assiduously, and then only after a couple of years of self-training did he begin to improvise in the matter of Chinese food.  Marvelous.  He knew what he was doing.  He cooked Mexican; he cooked risottos; he cooked pork loin in milk sauce from Marcella Hasan’s great Italian cookbook.

            But he can’t do the physical part of cooking now.  But the physical part isn’t the only part.  He can drive his wheelchair into the kitchen (that’s why we had it remodeled this way) and supervise while Peggy does the cooking.  Tonight, it’s scallops with pasta and a spinach-and mushroom sauté.  But it’s clear that this is going to be a long haul and that Brooke’s expertise is perhaps more needed than ever.  Fortunately, some of our twelve-person staff are pretty good cooks, and like to do it, so we eat well (and nutritiously) all the time.

            But that’s the home cooking.  Getting restaurants to make take-out stuff for you is one thing; having really wonderful cooking come to you is even better, better than even the best commercial establishments can do.  A couple of nights ago, for example, some Iranian friends brought Persian food (cooked by the husband, it’s important to note!)—spectacular food, something we’d never had before--and, recognizing that Brooke was having a bit of a hard time, they didn’t even stay to eat it with us, though we ate it later with enthusiasm.   Then the next night some friends brought German pork loin, the tenderest imaginable, and like the previous night also good company.  We’d had a delectable salmon a few nights before, with a truly amazing conversation.  It would be impossible to chronicle the remarkable meals people have brought over the last few years, both at South Davis and now at home, but even more impossible to chronicle what it’s like to have people do this for us. 

            It’s really about a new way of life.  Restaurants?  Who needs them.  We’re having better food and far deeper conversations, because it’s a private space without a lot of waiters bustling around and other diners gawking at you; we’re beginning to recognize it as a new stage in our social lives, the only thing that’s really possible right now.  We wouldn’t wish the reason for this on anyone, but now that Brooke is home and we’re discovering what’s possible (and what isn’t) in our so-called new lives, we want to recognize what’s good.   Dinners with friends (and family) are good, especially when they do the cooking.

            And if everybody else is phoning ahead for reservations and studying the menu and figuring out which wine to order while they talk about what a good restaurant they’re in, well, that’s okay with us.  We’re just not ready for that quite yet and may never need to be.