I am in the process of renewing my passport, so I can get a REAL ID (like next year when the lines at DMV are less than six hours long), and went to Walgreens to have a photo taken. I could not believe how terrible I looked in this picture. If I could find four other people of similar appearance, we could start a band called The Peevish Cadavers.
Recently I sat with a patient in the emergency department at County Hospital, consciously leaving plenty of silence. She told me that earlier that day, she had felt short of breath, so she had come to the hospital. We fell into a rhythm of silence, another detail or two emerging, then more silence. Suddenly she said, “They found a mass on my lung. I may have cancer.” I’m not sure she would shared that if there had not been plenty of space in the room.
I have noticed that in some visits, I can fall into helping to fill every moment with words, even if that means having a social conversation (“Did you hear The Peevish Cadavers are playing at Cow Palace soon?”). I am sure this is due to some discomfort of my own that I can’t tolerate, maybe even just the discomfort associated with silence. Wishing to change my own state, I talk, and maybe the person does not end up telling me about the mass in her lung or the recent loss of a loved one.
Very often, a patient will describe her situation to me and then say, “But I’m grateful! I’m getting good care, and others have it much worse than I do.” I increasingly find this poignant. While I appreciate and even applaud the impulse to practice gratitude even at the grimmest of moments, and while it is likely factually true that others have more serious prognoses, I think the patient is saying, “I don’t deserve your care and love, and I am ashamed to be seen asking for these things.”
I appreciated this in Reb Anderson’s book Being Upright: Zen Meditation and the Bodhisattva Precepts: “We must be careful not to use the immense suffering of others as an excuse to avoid awareness of our own pain. In fact, if we refuse to listen to our own suffering, we will not really be able to listen to the pain of others.” I would like to find skillful ways of introducing this perspective when I hear a patient say that others are the ones truly deserving of tenderness.
I called Emily in hospice late in June and ended up feeling kind of distressed after she described various difficulties she is having. She said that she is woken up each day at 6 a.m. so her diaper can be checked; getting up so early makes the days very long. A few hours later, she is bathed, which she said causes a good deal of physical discomfort. She is down to zero limbs that are free of pain, but when she expresses this to the aides who are bathing her, they say they have to do it that way or risk injury to themselves. Emily said she doesn’t want anyone else to suffer, either, so she tries not to complain too forcefully. I wonder if a sponge bath every other day would be sufficient, since she is not exactly working up a big sweat on a regular basis.
She said that when she was out on the back deck—a lovely place, as I recall—another patient asked if it would be all right if she smoked. Emily didn’t want to say no; she said she understands what it’s like to crave a cigarette. The smoking patient was joined by a smoking staff member, with the result that Emily found herself craving a cigarette, too. I have mixed feelings about that one. She is proud of having quit smoking a few months ago (because she couldn’t smoke in the hospital), but at this point, it probably doesn’t really matter that much if she smokes.
Finally, she said that workers at the hospice, when they see her crying, tell her, “Don’t cry!” I asked if they seem to mean well, or if they are just being unkind. She said it seems like the latter. This made me angry. Why is it bad to cry when you feel sad? Emily said, “Maybe they have difficulty with their own feelings.” That would be my exact analysis. She begged me not to mention any of this to the staff. She doesn’t want to be perceived as a troublemaker.
I felt bad for her after we hung up, and also chagrined that I had inadvertently told her a lie when I said that hospice was a nice place. It is not proving to be very hospitable from her perspective.