Brooke’s moved beyond using a one-way speaking valve on his trach to having it capped at part of the time: this means he breathes through his nose and mouth both on the inhale and exhale, just the way we all do. Or rather, it’s just the way we all do, but he still has a something like a piece of white PVC pipe, the trach, in his throat that he has to breathe around or through—but capping it is another big step forward. He hasn’t used the vent in over a week and it’s turned off again, a big awkward but thankfully silent reminder of earlier harder times. The pacer is really working.
CORROSIVE THOUGHTS: ENVY AND OTHER PEOPLE'S TRIPS
This past week, Peggy was at a bioethics conference in Key West. When she got back and told Brooke about it, she realized she was trying to keep the details of the sunshine and the ocean breeze and the blue waves sparkling along the beaches to a minimum, stressing rather that the conference involved many long hours of sessions in closed, heavily air-conditioned rooms, away from the sunshine, and the fact that the weather was in the 90’s much of the time and humid, and that the reef where you go snorkeling is at least at first sight drab compared say to the Caribbean and only interesting after you stop wishing you were seeing schools of brightly colored fishes.
Just the same, it’s hard not to tell Brooke the truth about it. It was delightful, delightful. That’s the trouble.
Other people tell Brooke about their trips too—short intense trips, long leisurely ones, local daytrips, distant Bildungsreise sojourns. Sometimes they bring pictures of European towns or Mexican beaches or remote places in Asia. They give vivid descriptions of architectural treasures and opulent museums and especially of meals at outdoor cafes or 3-star restaurants or little family places specializing in local delicacies. But of course there’s always this tension about whether to talk about such things at all, given that Brooke can’t realistically go any of these places ever again.
So we’re talking about it. It’s about envy, he says. They get to go on trips; I don’t.
Here’s what he says about envy:
Envy corrodes the soul—whatever you mean by “soul,” it’s at least the moral part of one’s being. There’s self-pity, there’s self-blame, there’s shame, all related to envy; and most centrally there’s envy of other people, envy of who they are, what they have, and what they are doing, the kinds of lives they are leading, and the good fortune they are currently enjoying. I want to try to clear the path to a more peaceful, less restless, purer state of soul, Brooke says, that is, that the moral part of one’s being is less corroded by these forms of envy.
On self-pity: I feel it very strongly when other people tell me about their trips. I hate the situation I’m in; I’m not getting any younger, and I’ll be trapped in this broken body depending more and more, and more and more, on other people, while others are out seeing the world, experiencing things, actively doing things I’ll never be able to do. That’s the self-pity part.
It’s so easy to give in to self-pity, Brooke says. I don’t usually play that trick, he says, but sometimes it happens: saying things like “why would I want to travel to Key West, if it’s so hot and humid and filled with tourists and tourist traps and if the reef is so drab compared to the Caribbean?” There are lots of games like this, he says, “why would you want be at the beach at all—you just overhear people engaging in empty chatter or chasing around after a volleyball”-- that doesn’t work, you can’t really fool yourself. You don’t want to go to extremes by insisting that people are frittering their lives away by just traveling, that’s another way of corroding yourself, corroding your soul, trying to fool yourself out of reality. It’s as self-deluding as trying to say, I’m better than they are because I’m suffering more. But you really do wish you could travel and you know it would be interesting, exciting, wonderful, just even the sheer pleasure of walking down a street or getting up in the morning and fixing a cup of coffee, even in a carafe in a dumpy hotel, all the mundane things that “regular” people take for granted, as of course we both did before the accident.
On self-blame: Blaming myself for the accident—was I going too fast? Was I rounding a blind curve too widely? Was it my fault? We’ve written about these things before, but didn’t think of it as related to envy. Was self-blame compounded by the fact that I’d just bought new equipment early in my retirement—new mountaineering skis, a state-of-the-art road bike—in what must have been an attempt to recapture my youth, and I was blissfully unaware of the dangers that a sleeker, faster bike would involve. To relieve myself from self-blame, I’d really like to believe that the accident was the other biker’s fault, that he crossed my path as we both swerved; in fact, I have vivid visual recollections of this, but I can’t be sure they’re really true. In any case, focusing on who caused the accident is in essence self-blame, utterly corrosive, whether I think he caused it or I did. It gets one nowhere, and it makes no difference who actually caused it, if either; it happened, either way. Neither of us can know who was actually to blame, and there weren’t any independent witnesses; but I know my personal sense of what my own role in the accident was fluctuates with how I feel at the moment.
On shame: Shame is somewhat different, but I get these flashes of feeling: how are other people going to regard me, driving around in this wheelchair? It’s an especially painful feeling when I think of other people who knew me before the accident as a strong, outdoors, always-active, vigorous, and (some said) handsome kind of a guy: now what they will see is a paralytic (notice, I didn’t even say “person”), dependent on an elaborate wheelchair for mobility, completely contained in this mechanized thing. I can only move it with my head or with my left hand; I can’t do anything else. I suspect that others don’t even see the person very much, just the chair. Think about people who’ve been badly burned, or who have some deformity; they no doubt have the same painful experiences. I’ve often looked away from quads I see on the street; I know people will do the same to me. It’s just a fact of life, of my new life. But the shame communicates itself to you just the same.
In my sane moments, I recognize that these things don’t matter. What matters is that your mind gets attached to thoughts about them (to use Buddhist language in thinking about a form of envy, a Christian sin, that “corrodes”); you spend your time shamed by what other people think of you, not what you think of yourself. So what do I think of myself? That’s not easy to answer; when I pass a mirror in the hall and see my own reflection, there’s an opening for shame, even though it’s just me looking at me. Of course, no one who is a patient in this facility or who works here has these thoughts, since there are wheelchairs everywhere, and so far I’ve been pretty well insulated from the outside world, but I think I know what lies ahead. Leaving this protected environment won’t be entirely easy, after all.
On envy in general: I’ve had to struggle with envy all my life, as well as self-pity, self-blame, shame, and many similar challenges. I don’t think I’m alone; I think it’s part of the human condition, but one that is particularly salient in my circumstances now, as it is for others with severe conditions like me. Envy I suppose arises in childhood when we learn to make comparisons between ourselves and others, but this is phony in adulthood, we are who we are. Making comparisons between ourselves now and ourselves in the past or in an imaginary future is also problematic, and a particularly corrosive thing for me is remembering my previous life—who I was vs. what I’ve become—very corrosive, when the new me envies the old one.
We talk on the phone with friends who are sitting on the deck at their cabin in Maine. They’re describing the loons swimming in the lake out in front, the blue heron that has just swept up into the air from its fishing-place on the shore, the little wind in the trees, the way their little city-dog is exploring the red squirrels that tease him out by the shed. Brooke is remembering his visit to them two years ago, only a couple of months before the accident: I used to swim across that lake every day.
The worst form of envy is when you wish that other people suffered misfortunes—they don’t have to be just misfortunes like your own, but seriously unfortunate nevertheless. Sometimes you envy people with lesser misfortunes—when you ride up and down the hall in this hospital and see other people who are only paraplegic, or who can walk even if they have obvious other problems, you want to be like them. But often envy takes the form of wishing someone else’s life were miserable so that you could feel good—these are emotions that one needs to acknowledge in oneself. I’d call that something like a sin, and if I were still a Catholic I’d feel obliged to confess it. “Well, we had a miserable time on our vacation,” somebody says, and I’m lying here in bed thinking good, they had a miserable time, I’m having a miserable time too—these are medieval sins.
One needs to sweep past these forms of envy to a purer, more selfless state of soul, less restive mind, less self-delusionary. Of course none of these emotions or moral feelings are unusual or evil in themselves—they are intensely human, part of the fabric of ordinary life, and anyone in my situation would feel them as strongly as I do, I think. The problem is letting them consume oneself, or corrode one’s heart, making it impossible to enjoy the presence of others and the enjoyments they may be experiencing.
After all, people do come to visit and find themselves talking about their trips. When I’m most whole, this is wonderful for me: I not only experience through their eyes what they’ve experienced, but I also understand how wonderful it has been for them, and that gives me real pleasure. I get two benefits: their vision, and my vision of them.
What I keep forgetting in all this is that from certain perspectives, my situation is most enviable: I’m alive, my brain works, I’m surrounded by loving and caring people, I live in a place for the time being that is not only professional but human, where I’ve made many friends among the staff and experienced genuine compassion and love from them. Compared to many people in the world, who are suffering dreadful diseases or enormous pain or who’ve been essentially abandoned in a facility like this by their family, my situation would seem like bliss. This is very humbling, and only adds another dimension to these moral dilemmas. How can I envy others? How can I feel self-pity and self-blame and shame when others, who exist for most of us out of sight, are in far more terrible conditions than I am?
We heard some time ago from someone we don’t even know, a woman on a disability list who described her frustration and challenges in not even having a wheelchair; she lives in a single room, and it’s only the internet that makes her life tolerable. That seems far more terrible than what I’ve got; I need to remember what it is that makes my life so worth living.
In the bathroom in our little cabin in Torrey, where we haven’t been for over a year and a half and may never be able to go again, there’s a little shelf with stuff to read while you’re sitting on the john. The wisest among these things is the Handbook of Epictetus, translated by our friend and colleague, Nick White, a copy phenomenally rumpled from being read so many times. Here’s paragraph 43, capturing the image of Greek two-handled vases:
Everything has two handles, one by which it may be carried and the other not. If your brother acts unjustly toward you, do not take hold of it by this side, that he has acted unjustly (since this is the handle by which it may not be carried), but instead by this side, that he is your brother and was brought up with you, and you will be taking hold of it in the way that it can be carried.
So I think about think about how people visit me and talk about their trips. If I hold it by one handle, it’s like this: “people visit me and talk about their trips.” If I hold it by the other handle, the one by which it can be carried, it’s like this: “people visit me and talk about their trips.”
The great thing is that they come.