What Is It Like to Be Dying?
Every now and then, the advice that the singer-songwriter Warren Zevon issued to the living, while he was dying, pops into my head: Enjoy every sandwich. Most often this happens when I am enjoying a literal sandwich. But his larger point also holds: savor the good things in life while you can. That the good things in life may be savored even by the dying is, in American culture, a quietly subversive idea. It is also one of the themes of Documenting Death, a new, short documentary directed and produced by The New Yorkers Sara Joe Wolansky. The film tells the story of Kim Acquaviva and her wife, Kathy Brandt, who died of cancer in 2019, at the age of fifty-four. Brandt was a palliative-care nurse and an outspoken proponent of hospice and palliative care; when she received her diagnosis, she and Acquaviva, a professor of nursing at the University of Virginia and an expert in end-of-life issues for L.G.B.T.Q. individuals and their families, decided to document Brandts decline, and their familys last days together, through frank and frequent social-media posts. The New Yorker Documentary View the latest or submit your own film. Many of the posts deal matter-of-factly with Brandts experience of inhabiting a dying body. (Its like, for me, at least, theres nothing there, she tells Acquaviva, on camera.) The couples radical openness extended to a post, the day before Brandts death, in which Acquaviva says, Im sharing this for nonmedical people whove never heard the beginnings of a death rattle. The death rattle is Kathy Brandts. . . . The video is dark and jumpy, but the sound is decent. The next day, Acquaviva posted a picture of her wifes face, taken shortly after her death. Some will find the couples documentation unsettlingit is certainly a breach of the usual boundaries between public and private. That is by design. In a culture where we dont share almost anything around illness and death, Acquaviva says in the film, the only way to counter that is for some people to share a little bit more than is probably appropriate. The goal, she says, was to push back against the stigma associated with death and dying. Though the experiences of dying, and of end-of-life care, touch everyone, they happen behind closed doors, often away from even close loved ones. Acquaviva and Brandt saw it as an extension of their professional work to bring their private moments into the open. But they also had another, more personal goal, which was to enjoy what little time they had left, with each other and with their young-adult son. About a week before Brandt died, Acquaviva posted a picture of her, with the caption Shes still smiling when she wakes up and sees me. Life is good. That emphasisthat life could still be good, even when it was endingis part of what drew Wolansky to the couples story. Acquaviva recounted for Wolansky a conversation she had had years earlier with her mother, who was dying of cancer but nevertheless had a question about sex, one that her doctor wasnt answering. Her mothers sense, Acquaviva said, was that it was petty or indulgent for someone who was terminally ill to be concerned with matters of pleasure. In my conversations with Kim, Wolansky told me, she said that, when youre dying, theres often guilt about enjoying the things that make life wonderful, because you should be focussing on trying not to die.  Which is not the same thing as focussing on living. Toward the end of my own mothers struggle with cancer, one of her treatments turned her stomach against coffee. Isnt that sad? she said to mealmost the only complaint I heard from her during her three-year illness. And it was sad. She had so loved her cups of black coffee, loved the pleasures that accompanied them: good conversation, or a book, or maybe a chance to sit and watch the sunlight move across the room. As a dying person, she had other things to be sad about, too, but there was this very specific sadness about coffee. The loss seemed to me a sign of a life well lived. She had enjoyed every cup.