Saturday, April 30, 2011

Progress Report


            We know that our last entry was somewhat disturbing to some people, the part about hate as the shadow side of dependency and therefore as part of a marriage in our new circumstances.  Actually, that account was begun over two months ago, after Brooke had come home from South Davis and the initial honeymoon of novelty and gratitude that he was able to come home—as stressful medically as that time was—had evolved into a more realistic facing of the situation that arriving back to one’s home in such drastically altered condition involves.   It’s just that we couldn’t finish that account in all these months since then, try as we did, but we still wanted to do so in order to give you a fuller, more honest picture of what this experience involves—even if it means probing into areas that are disturbing, not just for us but for many people—witness the comments made to that entry in this blog.  


            It’s Easter weekend now, at least it was when we started this new set of remarks (though now it’s a week later), and we want to report to you on all the good things that have happened over the past four and a half months that Brooke’s been home.


            First, there’s the physical stuff.  Brooke’s been doing heroic workouts at the outpatient spinal cord rehab clinic at the other end of the valley, Neuroworx, and not only is he much much stronger in the physical therapy he gets there, but even the half-hour van ride on the freeway to get there isn’t as much of an endurance trial as it used to be.  He can do leg pushes with both legs, snow angels, much much more—that is, much much more for someone who is still functionally speaking almost entirely paralyzed.  He does two days a week on land as they call it and one day a week in the therapy pool—this is the hardest, best workout and one he has to do off the pacer, so it is a huge challenge but also a huge thrill. He’s working another two days a week on occupational therapy at the U—also a challenge and a thrill.  (When he arrived home a few days ago, Brooke told Peggy that they’d given him a humungous workout on his biceps and triceps—“but I asked them to,” he said.)  He’s working on hand motion too.  He’s still got much more going on the left side of his body than the right, but there’s action on the right too.   Most important, he’s got far greater trunk strength; he can sit almost fully upright on his own, unaided, for a considerable length of time.  

But while we’re celebrating these gains certain painful memories intrude: among them, Brooke remembers, an OT at South Davis when I was first there told me I had no trunk strength and would never have any.  To cement his point he read something out of a book; I guess I believed it.  But now we know better: what he was reading is true for people with high-level cervical injuries that are complete, but my injury is incomplete—that’s what makes any return possible at all.  We’ve wasted a good bit of time with therapists who didn’t appear to recognize the difference between complete and incomplete injuries, and who didn’t understand that to get any return at all, you have to keep working and working for it.   Now, not only does Brooke have vastly increased trunk strength, but he has enough to spend as much as a half an hour in what’s called a standing frame, something that you begin by sitting on as a sort of chair, but that cranks you into an upright position and holds you there for as long as you want, enhancing bone strength and the cardiovascular system, and perhaps preparing what might turn out to be later developments in function.   Still somewhat of a beginner at this, he can already stand as much as half an hour even without medication to keep his blood pressure up, and longer with it.

            Seeing Brooke standing is an overwhelming experience, at least for me, Peggy says.  There’s something about the magic of being upright.  And he’s so tall—I know he’s 6’5”, but I’d forgotten how tall 6’5” seems.  He can stand with his elbows propped on the Lucite tray table—and a few days ago when he did it we spent much of the time watching a documentary on the TV screen—a documentary on dirt. 



Next, there’s respiratory progress—lots. Brooke’s cough is developing, a little more almost every day, so that it’s gone from being entirely absent to being deep, almost gutteral, and most important, productive in bringing up secretions and effective in clearing the airway.  All this is crucially important in the next step in respiratory rehab: getting control of one’s respiratory secretions, so that you no longer need the trach for suctioning or anything else.  Brooke’s set his sights high: that’s to have the trach, an upside-down L-shaped piece of plastic pipe that goes straight in through a hole in the throat but angles down into the windpipe, replaced by something called an Olympic button:  a little plastic plug that keeps the stoma open but doesn’t block the airway at all.   You have to have a good cough to do this, and good airway clearance, and you have to be prepared to be suctioned in a trickier way, but just the same it would be real progress.  That’s where he’s headed now, working to reactivate the upper airway by doing his CoughAssist therapies through a mask over the nose and mouth instead of through the trach, starting to move secretions out through his mouth and even nose.  He can spit now.   His ability to bring up secretions and also aspirated food has improved dramatically; earlier, he says, if something got stuck in my throat it would previously have led to near collapse; now, I cough it up.   That’s certainly not easy and it doesn’t always work, but it’s way way better than it has been. One thing that’s contributed a lot to better respiratory function and better general health is using CPAP at night, just like other folks with sleep apnea, only Brooke can do it with the backup ventilator through his trach—but this ordinary therapy has made a huge overall difference in his general health, especially since he now sleeps really well at night.  And even though this isn’t Brooke’s highest rehabilitation priority at the moment, he’s also been breathing off the pacer—a couple of hours in the morning, almost every morning, and sometimes in the evening; three and three quarters hours today total.  It’s beginning to feel normal, he says.



            Then there’s progress in communication.  Thanks to our great friend Pat Zwick, who’s spent countless hours (and sleepless nights) working on voice-activated computer stuff, Brooke can now check into his email ( and, using Dragon Naturally Speaking, dictate replies just by speaking into a little microphone: he talks, and written text comes up on the screen.  We gather that these voice-activated programs are being used by doctors, lawyers, anybody who has to do a lot of dictation, even novelists and writers of all sorts, but it’s a godsend for someone in Brooke’s situation, who has a lot to say but for whom something like Dragon makes it possible to say it in a natural way, just talking about stuff that’s important.  We’re still having trouble finding a cellphone arrangement that works (although there’s a new lead as of today), since you normally have to push a button on before your cellphone’s voice activation starts, and then push again off so as not to use up the battery.   It may not seem like rocket science to find a way to circumvent this obstacle, but so far we haven’t found it.


            There’s pill progress too, that is to say, getting rid of some of the medications Brooke absolutely needed at the beginning but which have of course side effects and risks, which you don’t want to take unless you need them.  For example, we’re celebrating getting off the last of the backlofen, the drug used for controlling spasms.  Brooke had huge spasms early on—vice-like grips around the entire chest, for example, and his legs jumping off the bed—these are the product of nerve impulses so to speak ricocheting back and forth in the lower body when they can’t get through to the brain. Brooke’s been tapering down on this drug for some time now—he started at 40mg four times a  day, 40-40-40-40, then a couple of months ago went down to 40-30-40-40, then 40-30-30-40, then eventually 10-10-10-10, then, a couple of nights ago 0-0-0-10 and finally down to 0-0-0-0, period.  This is a drug that has cognitive side effects, and so something we’re delighted to be entirely rid of, but of course that it was utterly necessary in the maximum doses right after the accident and can be entirely dispensed with now, even if the decrease has been so slow, is one among other signs of progress.



And there’s progress with, or rather, against pain.  One of the side effects of being as immobile as Brooke is is that one’s muscles atrophy.  In particular, the muscles of the buttocks, like everything else, atrophy, and the downstream consequence is that the wheelchair which had been proportioned to him originally had become a source of agony, since his buttocks sit lower in the chair, the knees higher, plus many other displacements.  The changed position irritates the muscle called the piriformis, the source of what’s known as deep hip pain and knee pain as well.  But now, after months of pain, Brooke finally has new leg rests that are long enough to accommodate his lower legs without pressure—he describes it as “liberation,” from pain and from anxiety about the onset of pain.   That acquiring these should have taken four months from the time the Seating and Positioning Clinic at the U hospital identified the source of his leg pain is a story in itself, but at least they’re here—and he is enjoying sweet relief. 



            And finally, there’s progress with some things that may seem like really small potatoes.  There was an old skin tear on his ischial sit-bone on one side that had remained open for almost eleven months at South Davis; it has completely healed.  We still watch it and everything else about skin integrity, always a serious problem in quadriplegia, like hawks.  But even in this long list of things in which progress is being made, it is actually big potatoes that this long-term lesion has healed; healing is itself actually a function of the fact that he’s healthier and so much other progress is being made.



            In addition to the physical stuff there’s Brooke’s teaching; he’s always said it was his lifeblood.  He’s teaching his third OSHER course of the year, this one on Homer’s Iliad.  Last fall, in his first course, teaching Walden, he was still on the ventilator, talking with considerable difficulty; he’d spent weeks training with a speech therapist to be able to talk in full sentences and with enough volume to actually teach a class.  Then he taught  The Winter’s Tale; that went much better, and he missed no classes, unlike the first time.  Now, his voice is fluid and large, resonant, so that even though the class size is still limited to 15 students and he still teaches at home, with the students packed into our living room, he can actually make himself heard and conduct a back-and-forth discussion with students.  The Iliad is not an easy text to teach, especially when you can’t riffle through the pages of a 600 page text, and a number of people were amazed that Brooke had chosen to teach it, including, he says, himself in the weeks prior to the beginning of the course.  But the text has unfolded nicely over the past weeks, and he’s looking forward to the final two sessions.   Not only hasn’t Brooke missed a class, knock on wood, but neither have any of the students except they might have brought infectious stuff into the house—they all seem fully involved with this course.  It’s a mighty text, and it takes a mighty effort to grasp it, but both Brooke and the students are doing it—that’s what makes a great course.   Already, he’s planning to teach a course on the Odyssey in the fall, and maybe after that Virgil’s Aeneid, Dante’s Divine Comedy, and who knows what after that.  In the meantime, because the summer stretches out in front and there are no OSHER courses offered in the summer, he’s thinking about conducting an informal reading group, possibly on Romantic poetry, maybe once a week—(if you might be interested please let him know; our living room still only holds 15).



Strength is returning every day and so is confidence.  Peggy is not as afraid of leaving Brooke and Brooke is not as afraid of being left.  Over the last couple of months she’s been to London, Belgium, Wisconsin, Portland and Seattle, a fraction of her former travel but only what she wants to do.  Brooke says he has greater emotional happiness.  It’s still not any fun to be quadriplegic, with pain, spasm, hot and cold flashes, and 900 things that one misses, but just the same it’s extremely encouraging to experience this progress, and he says he has the sense that all the pushing that’s been going on has been moving in the right direction. He speaks of increased selfconfidence and pride in what he’s been able to do. He talks of a general sense of optimism despite all the losses, a sense that both of our efforts have been rewarded.  And he can concentrate now on things other than his own physical situation; he’s been watching Marcel Ophuls’ The Sorrow and the Pity with our friend Dave Mickelsen, four hours of intense focus on the French resistance, and while nobody could watch it all at once and it will require at least four nice dinners as well as viewing sessions, this is something well outside one’s own inward sufferings.



What’s the bottom line in a progress report?  It’s about progress, however slow, and the continuing awareness of how much the physical and the mental are intertwined.  The new surge of physical progress, clearly a product of the extensive physical therapy Brooke’s been getting at Neuroworx and also the occupational therapy at the U’s outpatient rehab department, has enormous benefits for his mental condition.   It’s like restoring the mind/body relationship to what it normally is, or some approximation of it.   Did Descartes get it wrong, to take the mind and body to be entirely separate, connected only by the tenuous fiction of the pineal gland?  Well, in a sense, yes, and in a sense, no.   Right after the accident Brooke was fully paralyzed, during that spinal storm period, with no motion and no sensation at all in his body below the level of the injury: he was only head, and had no body that he could use or be aware of.  Then some things started to come back, but slowly; then there were long setbacks and backsliding from inadequate therapy; now things are moving forward again.  Of course this means pain and frustration, and sometimes the edge of despair.  But for the most part it is a climate of energy and optimism, with small but significant amounts of new function and sensation appearing nearly every day.  It’s exciting again—even though we’ve learned that one can survive without connecting with one’s body at all, as if the pineal gland had withered away—because being able to work on one’s body, to get it to move however slightly, to discover new sensation that it feels, is after all a source of real pleasure in itself.


Brooke had a dream last night about walking—he found himself, to his amazement, able to feel his limbs and make them move, and by the end of the dream he was looking for somebody to go backcountry skiing.  While walking, let along skiing, may seem extraordinarily farfetched, his previous walking and motion dreams all involved impairments—broken skis,  uneven legs, always about to fall down.  This dream is more optimistic in its subconscious wish-projections than any of the previous ones.  Of course there are still bleak moments, sometimes very bleak, but not nearly as many as some time ago.  He’s actually better, healthier, happier, even despite everything.  And that’s not just because spring is finally on the way.





Wednesday, April 13, 2011

The Shadow Side of Dependency

            Dinner with L. and D., it seems like just a couple of weeks ago, but was actually about two months ago.  We made some notes at the time, and we’re still thinking about it.  In the middle of that dinner, Brooke turned to L. and said, I want to tell you something that I’ve only told Peggy and no one else.  This happened back in Rehab.    Peggy, you were just sitting on the side of the bed, we were just talking about something, not anything very important, but it just came into my head, a clear voice, I hate you.  It’s come back now. The fact that it’s come into my head two years later, says something. 


            The voice that says I hate you is the voice of an infant.  I am that infant, at least some of the time.  Peggy and I used to talk about my physical state two years ago when it was just beginning to show some signs of returning motor function breaking through the paralysis; we said that I was in some ways like an infant—learning to speak, to breathe. Now I recognize that at least some of the time my psychological state has been that of an infant too.  


In talking with my psychiatrist friend K., I’m reminded of a book by Melanie Klein called Love, Hate, and Reparation.  She doesn’t dismiss hate, but sees it as an emotion like many emotions, one that should be not shied away from, but admitted, because only when you feel guilt for the hate can you start the reparative process that leads to all forms of creativity and love.  Awful as that moment was to me when I heard that voice inside me say I hate you to my wife, whom I’d always thought I loved, the shadow side came out of dependence and revealed itself, revealed its darkness.  Somebody, one of K’s teachers I think, said, there’s gold in that hatred, in the shadow side.    If you can talk with it, K. was saying, envision it as anything but a person—an object, say, or a stone, even a horse or a bull, you can recognize it and deal with it constructively.


According to Kleinian theory, infants hate their caregivers as much as they love them, and when they hate them they feel guilt about that, if they’re going to go on the journey of life—they need to feel guilt, because the hate isn’t deserved.  The love of the caregiver, whether the mother or someone else, for the infant is deep and real, and when the infant gets to the stages of reparation it wants to give back.     Maybe I was at the beginning of this stage when I said I love you to D., though I hadn’t hated him or L., only Peggy.


Did I say that in my head, that I hated Peggy?  I indubitably did.  Nothing could take that away.  I felt terrible.  But I lay there, only a couple of months after the accident, still comparatively recently paralyzed, and tried to figure it out, why do I hate her so?   It was a sharp, stinging emotion that got covered over.    But now, two years later, despite our many expressions of love, we’re trying to bring what hasn’t been fully acknowledged out into the open, and a repeated tinge of hatred has reawakened that is helping to bring that out of the shadow. 


            The shadow is something you cast over it to obscure it.  The second shadow is all those things we’ve been having to recognize, like finding that after all this suffering and effort to come home, after all these pages of love story, we find ourselves at least for some time alone together.  Alone.  We have to wrestle with our psyches; we have to be aware of the dozen caregivers’ psyches; we have to wrestle with intrafamilial tensions, we have to wrestle with all these emotions--but the minute you stop being afraid of them they lose their power over you.  They evanesce. 


They should evanesce.    Something that hasn’t been achieved by me, says Brooke, is a kind of love that goes beyond all these binary emotions, love/hate primary among them.  In the cave at Dunhuang, at the beginning of the Silk Road in western China,  where Buddhist pilgrims stayed and worshipped, there are many many paintings, done over centuries.  The one I was most struck by was one of the Buddha undergoing his last temptations from the Satan-equivalent, Maya.   Maya sends all these dragon-creatures at the Buddha, and the dragon-figure is a central theme in the painting, but you see how the Buddha’s love and compassion, and his equanimity, make it impossible for these forces of hate and anger to corrode his heart.    He sits safely in that space, on the right-hand wall of the cave, and has sat there so to speak for hundreds of years.



These may seem to be just the ravings of a castaway, Brooke said, but there may be some truth to them, and the truth is that there’s a tighter, more subtle relationship between love and hate than the usual dichotomy we recognize.



                                                *           *            *


This discussion began a couple of months ago, as we’ve just said, when D. and L. came over, bringing dinner, and it was we think part of the adjustment that is involved in coming home.   We talked about hate and love, and about how honest the subconscious could be, when a sentence like that could seem to come out of nowhere, I hate you.  It was a little bit like a moment in Torrey when we were standing on the porch of our cabin, and there were two boys with a gun in the field down below, and some deer, and my subsconcious said, shoot it, like some aboriginal moment that goes back 60,000 years to the most primitive hunting instincts of prehominid beings.  Did I mean it?  I thought it, though I’d have been horrified if they did it. 


Yes, I’m amazed at how honest the subconscious can be, the shadow of the shadow-side of dependence.  This feels like so much a part of the texture of genuine human emotion.  So much of our lives are artificial, or culturally shaped, that they don’t seem entirely real, that unbearable lightness, insubstantiality of being.   But this raw stuff cuts right through; it feels entirely, completely, even overly real. 


When you said goodnight at South Davis, Peggy, or when you come downstairs in the mornings here at home, which has also become a ritual, often I love you, sometimes I hate you.


Question: how does one accommodate hate, or partial hate, or concurrent hate, without trying to obliterate it and without undercutting the amazing love that also surrounds it?   Does one just keep this painful kernel buried inside of some pleasant, soft exterior, or does one recognize it as a full partner in the emotions? After all, hate is entwined in even ordinary loving relationships; it brings us back to the past and the deep strata of our psyche, not just the little wounds and resentments but to deep gulfs of understanding.  Imagine that somebody stands in your way; imagine feeling that you’ve got to get out of the house; imagine someone whose very being shapes you in ways that aren’t your own.   Imagine all the husbands and wives who tamp down the feelings of I hate you until it explodes in rage or violence;  it’s much better to acknowledge what’s there and that it’s in some sense normal, that I hate you that’s part of everyday love.


For me of course, it’s more so, given how dependent I am.  But this will happen to many others of us.  Remember my father, Peggy, or your father, each of them dying of cancer, remember how dependent they each were in their bedridden state at the end?  Did they hate us, in their dependence, even when we were clinging to them so strongly, and with so much love, as they died?


            Maybe so.  Maybe hate just is the shadow side of dependence, unavoidable but  bearable in the end, especially when you come to see how tightly intertwined it is with love.   After all, I hadn’t really focused on that I hate you for almost two years, though I’d revisited it from time to time and it’s still really there, and will no doubt be there as long as I’m still dependent on you in ways I cannot control.