At the Igreja de São Roque, Lisbon

This is Peggy writing, again. This blog that Brooke and I keep is meant to be about Brooke, not me, and in general my experiences over the last year and a third, since his accident, while often painful and also sometimes luminous, don’t begin to be as painful or luminous as his. But sometimes the only way it is possible to tell you what it is like for Brooke is to tell you about something that has happened to me, and so let me tell you about something that just happened to me in Lisbon.

I went to Lisbon for just a couple of days, to give a pair of talks for a bioethics Masters course at the medical school there. It was a bit strange to be in somebody else’s hospital, after spending so much of the past year at the U. hospital here and at South Davis, and to be reminded once again that there are sick and injured and dying people everywhere, but I gave the talks—enhanced versions of the death-and-dying issues talks I’ve given many times in many places, about the backgrounds of these issues, why they are coming to the fore right now, and the intricacies of the overall argument for and against legalization of physician aid in dying.

A few times, when I’ve given talks recently, I’ve talked about Brooke: about right-to-die issues and how I’m forced to see them differently, about what it would be like if he were to want this (he doesn’t, at least not right now), and about “objective” measures of Quality of Life. In fact, I’ve even been writing about this, about how low he would score on almost any quantitative scale designed to measure of quality of life—pain, functionality, etc. etc.--and yet, such instruments don’t seem to capture just what his life is like. It’s way better in some ways, and also in some ways way worse. All of you who visit him or have talked on the phone with him or maybe even viewed the two multimedia presentations the Salt Lake Tribune did last year know this. He’s still Brooke, and that makes his quality of life despite everything pretty good.

When I gave these talks in Lisbon, though, I didn’t mention Brooke—I didn’t know the audience very well, I didn’t know how familiar they might be with right-to-die issues, I didn’t know the medical culture in Portugal, and, well, to be honest, this was something of a vacation. A vacation, yes, much needed, from the routine of arranging Brooke’s schedule and therapy matters, of trips to South Davis, of overseeing household modifications, and especially from the still-frequent crises, especially respiratory ones, that Brooke so often suffers. It is hard to watch things be so hard for him, so often, even just in the everyday run of things. It was also a vacation from a specific institutional setting, even if South Davis is a good one, and even more importantly from the self-control (never fully achieved) of learning to exercise infinite patience in watching the very very tiny increments, and long pauses in between, in the return of sensation or motion. After all, Brooke has been in the hospital for well over a year, and is still almost entirely paralyzed: he needs to be turned, positioned in bed, hoisted out of bed, fed, cleaned, bathed, and have every element of his care done for him. We celebrate the gains—today he is able to move his entire left foot, just slightly of course, but it’s for the first time--but we also have to recognize that he is still almost completely paralyzed from his neck on down.

The talks in Lisbon seemed to have gone quite well, and my hosts were extraordinarily gracious. They took me to superb restaurants; they showed me some of the sights of Lisbon; they took me walking along the Atlantic-coast beaches north of the city, and they even took me to an extraordinary artists’-enclave of wonderful inventiveness and extraordinary support for the arts, run by, of all things, a philosopher.

But I also walked around the city alone, a wonderful city of bracing hills, narrow alleyways, elegant shops, spectacular churches. There are palm trees in the parks and many people strolling outside in the early spring. It’s a city with a painful history, from the devastating earthquake of 1755, when something like a fifth of the city’s population died, to the facist dictatorship of Salazar. Just the same, it’s an utterly charming European city with a touch of Mediterranean flavor, wonderfully hospitable and interesting. Indeed, Brooke and I had had a trip planned there for early December 2008; his accident occurred just a couple of weeks before we’d been due to leave. But I see now that it isn’t what you’d call an accessible city for someone in a big heavy wheelchair, and taking that long-anticipated trip is another one of those things we have to recognize is likely not ever to happen. But then there are many things that were part of our past—not just travel, but hiking, swimming, biking, and exploring remote Utah ranges where wild horses are still to be found, or finding hot springs in open fields—these are all not likely to happen again, and going to Lisbon is just one among them.

But there I was, walking through the streets of Lisbon, seeing the distinctive cobblestones, the red tile roofs, and in a few places, laundry hanging out over the streets, like Naples. I came upon a church, the Igreja de São Roque, originally built in the 16^th century in what was then a cemetery for victims of the plague. The church is plain on the outside because it had been stripped of its ornamentation by the earthquake, but, unlike most of Lisbon’s churches, it had survived. As in all of the old European churches, you enter through heavy wooden doors, to the right or the left, then as you come around to face forward your eyes adjust to the darkness and you can see the altar, the transept, the nave, the soaring arches, the side altars each with its crucifix, its steps for kneeling, perhaps votive candles fluttering in the dim light. There are a few tourists looking at the art, but it is quiet, a huge space of heavy weight.

I’m not Catholic. But I found my fingers dipping into the holy water at the entrance and tracing the sign of the cross across my chest; I’ve never done this before, and it almost startled me, it was so nearly natural. I sat for a long time, weeping openly for Brooke, but then I finally rose to look at the art in the church. It’s a particularly lavish church, encrusted with the additions of centuries, and famous for what is said to be for its size the most opulent chapel in Christendom, constructed in Rome to gratify the pope but disassembled and shipped at outrageous cost to Lisbon. I saw the azulejo tiles and the multicolored marble and the Baroque painted ceiling, but then in one of the side altars there was a sculpture of a sort you can see in many European and Central or South American churches, but as far as I know not in America, a representation of Jesus after the deposition, after he has been crucified and then taken down from the cross. It’s a glass case, and in it is a marble or ceramic or plaster figure of the dead Christ—lying on his back, usually on a cushion, the body fully exposed except for a wisp of cloth across the loins. The glass case is otherwise empty; it’s just the body, life-sized, dead. The Christ in this church is from the 18^th century, but is the same figure as always—the perfect body, not muscularly exaggerated but of perfect human proportion and grace, represented by the artist with a pallor just pale enough to suggest death but still vivid enough to remind us of life, and marked of course with the traditional iconography of wounds. Christ’s head falls to the side, his eyes closed, the pallor evident in his face, but with his lips parted enough to suggest not only last words but the recency of pain. The overwhelming effect is of the perfection and yet motionlessness, the utter deadness of this body.

That’s what happened to me in Lisbon. I could see it, feel it, what has been the utter deadness of Brooke’s body, evoked by the passion-figure in this glass case. Deadness, what has been complete deadness, but with this difference: that Brooke’s head is still alive and in fact he is still very much alive, but alive to witness the deadness of this body we have both always loved.

Perhaps that’s why every little gain, like even a slight motion in the left foot, makes such a difference. His body is much less dead now than in the “spinal storm” period right after the accident, when nothing moved at all, but even with some sensation and movement in his feet and legs and shoulders and arms, the Christ-figure in the glass box in the church of São Roque spoke then and still speaks to me of what he endures.

We Have a Date

News flash: We've been given a tentative date of April 12 for Brooke's diaphragmatic pacer surgery! Of course, we know what "tentative" means, but just the same we're thrilled.

Prosody and its Future Prospects

 

            Every morning during his trach mask session, Brooke works with his speech therapist on intonation and breath control by reading aloud while off the vent and on the speaking valve—the exercise here involves using the diaphragm to produce variations in intonation and emphasis, and learning how to pause while one is speaking.  The therapist calls this prosody—a label that of course has a familiar ring to an English professor.  The two texts that Brooke has been working on over the past month have been Wordsworth’s short lyric “A Slumber Did My Spirit Seal” and the Overture to Proust’s Swann’s Way.   

The Wordsworth involves metrical considerations and the ability to complete a tetrameter line in one breath:

A slumber did my spirit seal:

   I had no human fears.

She seem’d a thing that could not feel

   The touch of earthly years.

 

No motion has she now, no force;

   She neither hears nor sees,

Roll’d round in earth’s diurnal course

   With rocks, and stones, and trees.

 

What the speech therapist praised him for the last time was the passion he managed to put into it—you’ll recognize Brooke in this—and managing to do it with his own real voice.

 

The Proust contains sentences of enormous length and complexity, the articulation of which is a test of endurance more than anything else.  The most recent reading involved a paragraph of about five sentences that’s over a page and a half long; the idea is to read in one sitting, as it were, the whole long paragraph as one coherent, sustained expression. 

 

All this work is in preparation for the implantation of the diaphragmatic pacer, about which we’ve been talking a lot in this blog.  The work on intonation and articulation contributes to strengthening the diaphragm and achieving voluntary control.  The curious thing, and something we don’t quite understand fully about the pacer is the relationship between the training Brooke is doing now and what the effect of the pacer will be.  After all, the pacer paces.  It paces at regular intervals, which can be programmed at various speeds, but as we understand it the pacing pulses will be at regular intervals, not the long and short patterns of ordinary speech, the variations in speed and depth of inhalation and exhalation, and many other real-life features.  The fact of the matter is that we just don’t know what will happen after the operation, in the weeks that Brooke will spend back again at South Davis, completing we hope his weaning from the vent—what his breathing and voice will be like on the pacer.  Will the delights of practice in prosody still be possible?  Indeed, like everything else in medicine, nobody can predict exactly what the pacer will make possible—after all, this will be the first surgery for this particular model of pacer in Utah—so everyone here is entering somewhat uncharted territory.  Of course, the device has been approved and has already been used in over 150 patients, but it will be the first time an implantation has taken place in this state.

It will be the first time in Utah, but not the last: the implantation, to be performed by a specialist from Cleveland, will also involve training a local surgeon to implant the pacer—not just for people with high-level spinal cord injuries, but, potentially of great significance, for people with ALS or Lou Gehrig’s Disease, to make it possible to stave off needing the vent for an additional year or more.  So part of what’s involved in looking ahead to this operation is the sense of contributing to keeping life better for other people, including a close friend of ours, in a way that wouldn’t have seemed possible not so long ago. 

Brooke says, it’s a tremendous adventure, and I feel tremendous excitement about heading into this territory. I just can’t wait, he says.  Of course this makes it frustrating that a date hasn’t been pinned down yet, though we’re hearing rumors that it’ll happen sometime during the first two weeks of April.    It feels like a cure, in a way, a cure for having been tethered to the vent for over a year, and while the vent of course has been life-sustaining, it seems time to move beyond it.   Whether this will be possible we don’t of course know, and one is always aware of the missteps that can happen, but at the moment it seems, as Brooke says, like a tremendous adventure, a tremendous, optimistic, eagerly awaited adventure. 

 

Oh, and speaking of cures, Peggy’s pneumonia seems to have disappeared.

 

           

 

 

Lying in Bed

This is Peggy writing. I’m not exactly sure how I managed to contract pneumonia—first a cold, then warning signals ignored, then relentless hiking in the icy cold, or maybe just general stress and in any case plenty of denial, but here it is. Pneumonia! It’s the not-so-bad kind, what used to be called “walking pneumonia,” but it does require a little attention.

Like staying in bed. This isn’t easy. Normally, when I finally make it to bed after all the stuff that has to be taken care of I’m more or less instantly asleep, so I don’t really know what it’s like to lie in bed awake. And not just for awhile, but for hours. It could be days. You lie there with your eyes open, and pretty soon you’re aware of a little discomfort, so you adjust a bit. You move your leg to the side, or twist your trunk around slightly. Then not much later, you do it again, maybe the other leg, or slide the trunk just a little in the other direction. Sometimes you turn on your side, just for a little relief; then back on your back. Then maybe the other side, or all the way over on your tummy. But it’s always about keeping just a little ahead of the discomfort that comes with lying too still in just one position, especially if the position isn’t quite perfect.

Brooke can’t make any of these moves by himself. He gets turned every two hours by the aides in order to prevent bedsores, day and night. He can ask to be repositioned, but of course has to be considerate of the staff and not ask too often. He’s up in the wheelchair for a couple of hours, but otherwise he’s in bed. And when he’s in bed, he can’t do all the little incremental readjustment every few minutes that goes with lying in bed. If there’s one lesson in a little touch of pneumonia (besides the obvious one about how important the lungs are), it’s about what it must be like for him to lie there, more and more aware of sensation all the time but still not able to move enough to do anything about it.

South Davis One-Year Anniversary, Continued: Good and Bad

Yesterday’s post was written on the eve of our one-year anniversary at South Davis; today is the actual anniversary day. But today we can celebrate again—at last report this evening, Brooke had spent almost seven hours off the vent, all of it on the speaking valve, and when I talked to him on the phone he said he was going back for more. He’d just had a bath given by the aide and our nursing student Julia, a delicious bath complete with head massage, body lotions, the whole nine yards (“like being at a spa,” he’d once said of these baths). He sounded as relaxed tonight as he was tortured last night. And they were playing Clifton Chenier’s bayou music in the background, the first lively music he’s wanted practically since he was back in inpatient rehab exactly one year ago, listening to Bob Marley every morning. This is good!!!

I’d been hiking this afternoon with a new friend whose husband is also a spinal-cord patient at South Davis, two doors down the hall. He’s a rancher, thrown from a horse—and this after a lifetime of riding horses, much as Brooke had been riding bicycles for years and years with never so much as a scrape. The new friend and I were comparing notes about expectations and prognostications and how we’d never succeeded in realizing what would be coming in the future, and in particular how quickly things could go from good to bad, unraveling practically in front of your eyes. We mused briefly on how medical practitioners at all levels might conceivably facilitate deeper-level understanding by patients of what lies ahead in difficult, hard-to-predict cases, where setbacks can be so sudden and frequent, and to what extent that is compatible with “maintaining hope.” We decided that maybe it wasn’t; if we’d had any realistic idea of what lay ahead for our respective men over the next year, we’d have been in utter despair. (Who knows what it would have been like for them.)

But that’s of course about foreseeing the seriously negative stuff. If there’s any way you could realistically foresee the remarkably positive stuff, well, this whole thing might be different. After all, things can go from bad to good just as quickly as from good to bad—to wit, Brooke’s evening at the South Davis Spa with the aide, Julia, and Clifton Chenier.

And, of course, they can flip back to bad again without any warning. If there’s a lesson we’ve been learning (besides all the lessons about patience, stamina, and, like yawning, how to cover your mouth so to speak when you’re gritting your teeth), it’s about not assuming that good will stay good or, more important, that bad will stay bad.

South Davis: One-Year Anniversary

Tomorrow, March 3, 2010, will be the first anniversary of our stay at South Davis. We’ve been reading over the blog for February 2009, leading up to the transfer from the University inpatient rehab unit to this skilled nursing facility at South Davis, and we discover that we expected to stay at South Davis for “a month, maybe two.” We thought Brooke would be weaned from the vent in that time and we’d be on our way home.

Obviously, this did not turn out to be the case. Not even nearly. He’s been at South Davis for one entire year, a long-timer, though not nearly as long-timer as some of the residents there.

In many ways, Brooke says, this is the saddest night of our whole time at South Davis. We’re talking about hard things; it’s not a kind of candlelight and roses anniversary. His nerve pain has flared up. He’s having respiratory troubles—probably a cold, requiring lots of extra suctioning. He’s got continuing return of sensation and movement, but it’s pretty modest and doesn’t translate into real function. He’s got MRSA boils in various places, including his scalp. He didn’t have pain for a long time; now he’s got pain everywhere. There seems to be no end to the various troubles in sight. And perhaps most difficult, Brooke says, we still have no word on a date for the surgery for the diaphragm pacer—something first mentioned to him as a possibility way back last summer, and infinitely postponed.

Part of what’s astonishing is our own naiveté. Optimism is part of the culprit here, but another part is the institutional way in which patient misconceptions aren’t corrected—a sort of shadow side, one might say, of informed consent. The patient is supposed to have the right to be told the truth, but apparently not the right to be corrected if he gets the truth wrong. Right after the accident, we thought—and said aloud, in front of many hospital personnel—that Brooke would be discharged February 3, 2009—after all, that was the discharge date listed on all the paperwork. Then it advanced to March 3, 2009—but those dates, we later realized, simply marked termini in insurance coverage. No one corrected our misconceptions. Then it was intimated, we thought, that Brooke would have the pacer and be home by the end of the summer, then by early winter, and so on. Some of the delays were certainly understandable—for example, it was remarkable how dedicated the doctor and his staff were in preparing really thorough and persuasive information for the insurance company—something I’ve been told appreciated by the company itself as well. I respect that thoroughness, says Brooke, but it is still frustrating not to know anything about what arrangements are—or are not—being made. As it is, we were told to start getting ready to go home three or four weeks ago, and indeed we’ve speeded up household preparations, but still nothing is happening, or at least nothing that we’re aware of. This state of prognostic limbo produces, as you might guess, depression.

Meanwhile, Brooke says, people will come and talk about rosy things, trying to cheer me up. It doesn’t work in depression (though it’s wonderful at other times). It’s not their fault, and I am grateful for their concern; it is hard for them to see what is sometimes the case. Of course there are wonderful moments, but this isn’t one of them; it’s the saddest night. Besides, it’s partly our fault: reading back over the blogs from a year ago, when we were just on the way to the South Davis, we can see that we always tried to find a way to say positive things on the blog, pointing to every little gain, letting our gaze glance away from the really difficult stuff. It makes me sick to my stomach, says Brooke. It’s the two sides of my personality, he says, the rational and the irrational; they’re at war with each other when things are tough.

After all, there really are positive things to say, both about South Davis and about Brooke’s situation in general—lots of them. Lots of them. Right at the moment he’s being cared for by one of the kindest and gentlest (and strongest) aides in the entire place, even if many are kind, gentle, and strong, and by repositioning Brooke and with a small amount of pharmaceutical help, Brooke is finally out of pain, comfortable. Now Brooke is thanking the aide, the same man he’s been coaching in English pronunciation, thanking him genuinely and profusely. And now they are talking about how difficult it is to say I love you to others—the aide tells a story about how difficult it was as a child to say this to his grandmother, even though it was perfectly true. So here’s it is only a few moments beyond what we wrote earlier, Brooke and the aide talking about how to express love, something they are obviously both doing. It is wonderful to hear. But it is something only possible I think here in the seclusion of our year (so far) at South Davis; it wouldn’t be part of ordinary institutional life.

And now we’re thinking again, as we did earlier in this blog, of Coleridge’s poem known as Ode to Dejection—a poem that takes the reader through the process of beginning in despair and ending in some kind of cathartic emotional release. Less than an hour ago Brooke was howling I can’t do this anymore, this is too hard, I’d put a knife through my heart if I could, and Peggy was saying it would be like putting a knife through her heart too--hyperbolic talk, perhaps, but expressing real pain. But now we are talking about love at a deeper level—including the kind of love just shown Brooke by the kind and gentle aide, how it in itself alleviates some of the pain and suffering that has been such a part of this year. Brooke had said, I wish I could tell you how much I appreciate what you’ve done for me, and he said, You did.

Maybe this isn’t the saddest night after all. Maybe it’s just a miniature example of the kinds of emotional swings and wars within ourselves we all go through all the time. Life is hard in lots of ways, and for lots of us, but fortunately it isn’t hard all the time.