Masks

I have had a week in which I have often found myself looking into other people's faces.

I have been reminded of what masks our faces are or can be, of how that mask is what remains when that which has made it a face begins to fade, to withdraw and eventually go away.

There was this man who was quite withdrawn from his face when I met him, his eyes half-lidded behind his expensive sunglasses (yes, you may ask, as I did, why was he wearing sunglasses?; surely not because the light bothered his eyes...), and his mouth agape in that relaxed yearning of the dying, a mouth grown comfortable with its openness, and thus feeling no need to close. This was not the way this man, during his span of living, would have wanted to be seen-- not, as it were, "caught dead" looking this way-- and yet, he would be, within hours after I saw him last. Perhaps his sunglasses were to protect his eyes from our seeing eyes, in the vain hope we would notice nothing amiss. He also wore headphones, tuned to his favorite radio station, filling his ears with Mozart. Maybe he was taking that music with him as he went? In any case, he gave every appearance of a person not paying attention to this world outside of him, but perhaps totally engrossed (except for the Mozart) with what was going on where he was going. His physical eyes were not seeing us; his other-eyes, the eyes of what one could call his soul, were perhaps seeing grander visions. In any case, what remained was the mask of him: gaped mouth, sunglasses and headphones.

Then there was the woman net yet where the man was, who would have three visages: one closed-eyed, and relaxed, like sleeping, only with less light in her face; another open-eyed, but eyes not seeing, like one of those faces you catch on the tv as you change channels and the digital picture pauses during changing, until the new picture appears; and then the one that was some shadow of her former self, the one in which she pushed herself forward into her face, as if to show she still could, that she still was that much alive. Around her, around her room, were pictures of herself, from various times in her life. In all of them, she was different than in any of the three faces she was showing me that day. She was, well, less mask-like... Comely, vital, engaged. Present, even, or at least, less ambivalent about being present. She wanted to be known, in those pictures. They said, "I was here!" Her face on the day I saw her evidenced the vain struggle to summon the energy in herself to be present.

And there was the young mother whose body had been wasted by cancer, and who worried whether her life was wasted as well, whether she had lived long enough to have a positive and lasting influence on her children. Fear bulged her eyes, and clenched her mouth. Through a sheer act of will she would live one more day, a victory over The Inevitable, one more evidence to her that she might have mattered. The mask of her face revealed as much as it hid: the sheer power of her will against inexorable forces. Her face was pressed up against the glass of this side of life, and she would hold it there as longs as she could.

Finally (for now), there was the man who'd decided to die. As the days went by his face became puffy, his eyes sliding behind slits, his mouth becoming mis-shapen, like a man who'd been too long in the boxing ring, in a fight of countless rounds. Day after day, he answered the bell, and greeted me, his internal battle still going on, until that last day I saw him, spread with a knock-out punch on the canvas of his bed, the count, the endless count, ticking like a loud clock. Would he rise once more, to face The Vanquisher? I was told maybe he did... But of course, all along he'd hoped only to rest, to lay his body down at last, and rest.

Over the weekend I did a retreat of sorts with other chaplains, some of us in hospice, some not, all of us professionals. As part of the day's activities we were asked by our workshop leader to choose someone we did not know, and sit opposite each other. This man from OC and I found ourselves face to face. The exercise was to be in listening, in speaking and being heard, but there were times of silence in between, and we found ourselves simply looking into each other's faces. It is an extraordinarily difficult thing to do, really, to sit opposite another human being and look into their face-- and let them look into yours! I found I had to work to keep myself in my face, in my eyes, so I could see and be seen. I kept wondering what he saw. I had to work not to avert my gaze, not to be frightened, to be relaxed and OK with whatever it was he was seeing in me-- and whatever it was I was seeing in him, for I saw him working to stay with his face, too! His eyes would dart, go away and come back, and his facial expressions would change, becoming worried or tense and then relaxing, as I suppose mine did as well. How hard it is for us to stay in our faces, I thought, to keep our faces, especially when looked at. How easy for our faces to become our masks, which we can change with the occasion, as suits our comfort level or need for protection.

Perhaps the dying show us something about the difference between face and mask-- the masks we all have; the face we only can be when we are our truest selves. Perhaps the living show us something of this difference as well...

Hospitality

Paths I travel in my work lead me to people's homes. More often than not, I meet people where they live. There is nothing like going to someone's home to experience how well they practice the virtue of hospitality.

Here are samplings of my experiences lately:

I went to this man's home to deliver some medications for his wife who was dying there. He had indicated to our nurse that he had no religion, and I had some sense going there that I probably would not have been welcome if I were just stopping by, but delivering the meds gave me a practical purpose to be there. He greeted me at the door with his hands still wet from washing dishes, and I shook the wet hand he offered. He led me in to meet his wife, but she was non-responsive. I tried to engage him in conversation about what this was and had been like for him, caring for his wife of many years as she died. His answers were cordial ans short. He shrugged off my empathy. Soon he led me from the room, back to the front door. After another exchange of cordialities, I was gone. I felt about the whole experience that it was as if I were walking around the outside of the house, looking in the windows. I never experienced "getting in," let alone being made welcome.

The next day I went to see a woman who is Pacific Islander. "Mahalo" said her welcome mat, and indeed Mahalo was her whole demeanor. She invited me in; a grand-daughter brought a glass of soda; she insisted I move my chair closer to hers; she spoke easily about her life, her illness, her expectations and her hopes; and she even asked me to stay and listen to a cd of a gospel song, recorded in her native language! Even as I was leaving, she tried to teach me how to say "hello" and "good-bye" in her tongue. I felt not only welcomed, but made to feel at home-- in the best sense!

Later I went to see a woman who was unresponsive and alone at the time in a skilled facility (a nursing home). I greeted her, thanked her for letting me be with her for a little while, and I pulled up a chair, presuming upon her hospitality and making myself comfortable. I spoke with her gently when I did, and otherwise spent silent minutes with her, listening to her breathing, listening for her thoughts. I tried to be a good guest, and not disturb her too much. I let her know that I realized that this was her space I knew I was intruding upon. When I offered a prayer at the end of my visit, I begged her pardon if this were not something she would have wanted for herself. I thanked her for letting me spend some time with her.

On another occasion, I went to the home of an Asian man, whose wife greeted me at the door. She welcomed me, led me to his bedside and pointed me to a chair she had set up there. The distance among us was respectful, formal. We talked in that same way-- distanced, respectfully, and formally-- about their experiences, her fatigue with providing care, his with simply making the effort to live. We acknowledged among us some things about their lives and their life together, and we recognized that perhaps very soon there would be coming a change, and their paths would part. My offer to pray was accepted, all in the same tone, and the blessing and encouragement to each in their prospective parting, all just the same-- heartfelt, and formal. As I was leaving, I did something I had not done before. I bent over the man, and gave him a special blessing. We looked into each other's eyes, and the formality evaporated just a little. He teared, and nodded. I nodded back, as if we'd reached a silent agreement. On the way out, I was given a small gift by his wife. She expressed her gratitude for my visit. He died a couple of days later, finally, after a decline of many months.

Hospitality is a hospice virtue, something we notice, something we try to provide and encourage. But we also know something about the hospitality we encounter in our patients and their caregivers. We know their hospitality has already been presumed upon. Long before we get there, they have already been forced to entertain an Uninvited Guest: Death. Often, how they have been doing in being hospitable to Death is reflected in how they behave toward us. Sometimes they realize that we come on Death's coattails, through the door left ajar when Death arrived. I wonder sometimes why our patients and families are ever happy to see us! Yet the variety of human experience is reflected in the variety of hospitalities shown to us in hospice. And I think, if patients and their families can find ways to be welcoming of us, then perhaps they can adjust to the prior intrusion Death has brought to their lives-- and in the end, be better for it.

Autonomy

Recently, a person came on our service who chose to die.

I know that this could sound like a Big Issue, what with the Physician Assisted Suicide statute in Oregon receiving continual scrutiny, and in general the association in the public mind of the words "choosing to die" with the word "suicide," with all of the attendant stigmas. But this instance was different. All this person had to do was decide for himself (I'll use the male pronoun here generically) that he no longer wanted to pursue the medical treatments that had been keeping him alive.

Sometimes, being kept alive is far from the same as simply living.

So, he did. He came to this place in himself, in his days, when the realization of this difference had dawned, and then, after awhile, before a "day" in the eyes of God had passed, he decided not to be kept alive any longer. Thus, he came onto our hospice service, by his own choice, to die. And now he passes his time with us in God's dusk.

This does not mean this was an easy choice on his part, nor one that was made lightly, certainly not one that was made quickly. It was, at heart, just a momentous choice. It was, we could say, an ultimate exercise of human autonomy.

Autonomy is a high value in hospice. We extol its virtue; we do, we say, what we can in order to protect and promote our patients' autonomy; and we have even devised a survey tool to gather information from out patients' survivors about whether or not we have succeeded in our aim. To a great extent, an autonomous death is a "good" death to us.

In this way, perhaps, we are a little out of step with our culture, a little behind the times. Autonomy as an ethical value is so yesterday-- a "modern" concept in a "post-modern" world. If one were to articulate a post-modern ethic for end of life care, it would have as one of its cornerstones pragmatism; and as another, relativism; and as a third, pluralism; and as a fourth, perhaps a recognition that there are no over-arching principles to guide our decisions. Certainly the idealism, and norms, and faith in the individual to do what is fitting for himself, and thus the support of autonomy, would not in themselves enter into the picture.

Thus it is that our patient comes, in his now waning days, to embody our values, and at the same time to highlight both why we continue to hold them, and how difficult they are to uphold.

For instance, this person has his own spiritual beliefs, well-developed for a person his age and life experience. I would say they do not fit easily into the concepts of any particular religion. Yet, in these his final days, he finds himself in the hands of friends and neighbors, most of whom are driven by their own religious convictions to come forward to help him, but at the same time, who also feel quite content in foisting their religion upon our patient. It is not as if our patient is unfamiliar with this religion; it is, more, in his vulnerable state, he can scarcely afford to jeapardize the support and company he is receiving from these well-meaning but passive aggressive and possibly religiously abusive people.

Ah, the power and limits of autonomy: he may have found it in himself to choose to die, but he could not find it in himself to be able to protect himself from those who mean well, but do not know how to good without doing "unto...". These benevolent persons have little sense that they are not, in fact upholding this person's autonomy, for they are driven by a still more ancient code of ethics, that classical sense that tells them they are to be moral agents promulgating a moral order!

It is apparent to me that our patient has, in choosing to cease treatment, in effect flung himself on the mercies of the conflicting ethics of our time. Thus everyone involved in his care is doing good by him, in their own minds anyway. The real question is, is Good being done?

I feel for him. I told him I admire the courage it took him to say, "enough is enough." But this is the modern person I am.

I feel sad that he has, in the course of his life, not developed a sufficient "community" around himself, so that here, at his last, he has to place himself in the hands of strangers, either from hospice, or his neighborhood (his neighbors, to be clear, know him; they just don't know how to know his values or maybe just how to respect his values, and thus are "strangers" to him), or the people at the skilled facility where he will die. But this is the post-modern person I am.

And, I feel a kind of indentification with him: I am helpless as he is helpless. I watch his slow descent in the Abyss. I know he would want that descent to be more rapid, but it must be only what it is. Each of us die only at our own pace. More, I realize as he goes, and as I do what I can to witness his going, that there is Something that transcends any of our ethics: a Light that shines in each of us only in the way It does. And when It is extinguished, the world is in that way, darker.