Tuesday, March 23, 2010

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 16th 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 18th 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.


Lorraine Seal said...

Peggy, this is for you, specifically. I remember several weeks or months ago you writing about Kubler-Ross’s stages of grief and how they might, or might not, be applicable to the experience you and Brooke are sharing. I don’t know her model well enough, nor am I close enough to your shared swings between agony and transcendence, to comment on that.

But something you wrote quite recently, what I can’t recall exactly, put me in mind of something I was unable to say to you at the beginning of this ordeal. It has to do with the gradual shift # I thought likely you would experience. I mean a shift of mood, of expectation, of, I suppose one can say, of acceptance. The emotional lens through which you view your life slowly, gradually, altering. It has to do with the whole gestalt: initial shock and diagnosis, the ever-present enormity of the change, the inability to see accurately into the future, peaks of hope and sloughs of discouragement, dealing with myriad different staff, medical and non-medical, the nights spent in chairs and folding beds in institutional rooms – so much I can’t go on enumerating, but you know all too well all I’m leaving out.

All this plus the carrying your grief and while trying to manage it and stay positive, your default attitude, I realise, yet an attitude that must be daily, hourly, minute by minute, challenged. While biting your lip, while managing your frustrations, while tamping down your impatience with the slowness of change..

I said earlier the emotional lens changes. It’s more than that; it’s like the scent of one’s life changes, something entirely visceral that you can no more articulate it than you can ignore it. It’s like the shift of light between one season and another, seen, felt, but inexpressible. And that’s what I’ve sensed in your recent posts. One day I felt it, that shift in you I thought might one day come but had been unable to express.

If I’m not misreading you, you understand what I’m writing and recognise the hard truth of the shift and know, more importantly, the strength it brings to carry on. It whittles something inessential away as you carry on doing what you’re doing for Brooke because it’s the most important thing in the world.

Because he’s Brooke, and because you’re you, you’ll both go on finding the luminous in life. In fact, your continued astonishment in the beauty of the world and embrace of life’s pleasures come through in this post. I can hear these in your voice as you write as I would if we were in the same room. We can also feel your grief as we picture you weeping in that dimly lit church, contemplating the lifeless statue. That will stay with you too, of course. You’ll with courage let go of what is unlikely to happen and contain your sorrow in Brooke’s paralysis. Just as the awfulness of his pain and loss of mobility hits you at odd times, sneaking up on you and whacking you again just when you think you’ve come to terms with it, so you’ll continue to find the transcendent in his courage and in his hold on life and in your love for each other.

Thank you for sharing with honesty and beauty the truth of your life now.

My love to both of you,

Anonymous said...

You may be only one person in the world, but you may also be the world to one person.............................................

Nikol said...

You don’t know me. I was a student in several of Professor Hopkin’s classes in 2006. I have followed his story with great interest over the past months. I did not know about the accident until quite a while after it occurred. From time to time I have occasion to reflect on people who have touched my life and lent a part of themselves to my human experience. Today that happened and I decided utilize Google to see if there were any updates. To my surprise and delight, I stumbled across your blog. I have spent the afternoon reading all of your posts and catching up on everything I have missed that has been happening in your lives. Several of your recent posts immediately brought to mind one of the most amazing lectures that I ever heard Professor Hopkin’s give. It was a lecture about poetry. I cannot recall the particular passage, but what I do remember is Professor Hopkins (in his usual passionate way) reading a love poem to the class aloud. He had set the scene by describing the love of his life (you) and then he began reading the passage. I still remember how the hair on the back of my neck stood up. It was as if the poem had somehow come to life and was floating through the air to find you. I have been married for 15 years to the love of my life—I have never heard poetry like that! I want to thank you for sharing the intimate details of your world. For those of us who have been so profoundly impacted by Brooke (even though he may never know how much) it is wonderful to be able to be a small part of his life, his passion and his recovery.

Annie said...

Brooke, you are a wonderful man! We are always amazed and left with a lingering happiness when we read of some new development in your recovery. We know it is thanks to your spirit and love of life that you persevere and win! David and I send our best thoughts to you and to Peggy, as well! Ann and David George
P.S. In the foothills, the dogtooth violets are blooming!