Columba Quigley
London, United Kingdom

The episode occurred some few years ago, when I was working in palliative medicine, caring for those with advanced and often incurable disease. As I walked onto the ward early one morning, a woman whom I had been seeing on a daily basis for symptom control started screaming at me. Only as I approached her bedside did I fully understand what she was saying. “Save me from the black hole! Save me from the black hole!” she shouted again and again. I was unprepared for her distress. The previous day, despite her advanced disease, she had appeared calm. I sat down beside her and waited silently. After a little while, she shared with me a dream she had had the night before. In it, she was being sucked into a huge black hole. She felt powerless and terrified. Even on waking, she could not shake off her terror. I listened, but her words seemed outside and beyond anything I could fully understand. I felt powerless, unsure how to lessen her fears and make it all a little more bearable. As a member of a multidisciplinary team, I called on one of my colleagues who was much more experienced in dealing with those facing imminent death. He spent some time with her that day. She died later that week.

Susan Sontag viewed the world as one sharply divided into two kingdoms, that of the sick and that of the well. At times, particularly in serious illness, the gap between both kingdoms can seem vast and insurmountable, even though in reality the dividing line is very thin. Now, as I think back to the event described above, beyond the woman’s terror about her imminent death, I wonder if an awareness of the enormity of the gap between her world and mine heightened her distress, as I stood impotent and silent, depleted of words that might reach out, console, and reassure. I have reflected much on the language of medicine since this episode and left clinical medicine not long afterwards, in part because my own need to understand the experience of illness for the sufferer. Returning to academia, I focused on the arts, essentially to see if the sufferer’s experience of illness can be shared and understood beyond the confines of clinical medicine. I went in search of a new language; and I found it. I found it in poetry, described by Miroslav Holub as “almost the instinct against death crystallised,” where poets such as John Berryman express what the ill cannot share with the clinician. From Berryman’s Dream Song 207:

-How are you? – Fine, fine. (I have tears unshed,
There is here near the bottom of my chest
a lump of cold, on the right.
A thing hurts somewhere up left in my head.
I have a gang of old sins unconfessed.
I shovel out of sight a many-ills else…)

In Marin Sorescu’s Pure Pain, the poet’s experience is expressed in few words that convey what he is going through, extending far beyond the capacity of a traditional medical pain inventory:

I don’t feel ill in order to feel better,
I feel ill in order to feel worse.
Like the sea with its green, treacherous waves,
You cannot sound the bottom of pain.
I dive into pure pain,
Essence of scream and despair,
And I return to the surface blue and pale,
Like a diver who lost His oxygen tank.

I also found it in the works and words of Christopher Hitchens, who described the language of his new “sick country” as a “lingua franca that manages to be both dull and difficult”; of Robert McCrum who shares his experience of being a “prisoner of ill-health, but I had yet to discover the terms and length of my sentence”; and of Philip Gould in his poignant memoir When I Die: Lessons from the Death Zone. Visual art is also well suited to convey the invisible geography of suffering, as epitomized by the works of Frida Kahlo. It is difficult to find an artist more affected by illness, and more willing to share her sick, bleeding, and broken body (Fig 1).

In the contemporary art world, the artist Bobby Baker experienced severe mental illness lasting over ten years. She recorded her experience using over 700 watercolors, all depicting her torment: “I was, in my view, distressed beyond anything I imagined it possible for a human being to be and remain alive.” Baker’s vivid images depict someone in deep distress. Reminiscent of Kahlo’s work, many pages in the diary appear drenched in blood and suffering, as if she herself were bleeding onto the page (Fig 2). I also found it where the verbal and the visual combine to create the unique language of comic books. In Marisa Acocella Marchetto’s memoir of the experience of breast cancer, Cancer Vixen, death is constantly seen throughout as an omnipresence hovering in the shadows. Elizabeth Swados shares her experience of illness in My Depression: A Picture Book. When depressed, she lives on the edge of a black hole and in constant fear of being sucked in. Black holes feature repeatedly throughout the book, as that of which she is most terrified. In one image in the book Swados sketches a black hole, which she labels as such and which consumes the entire page. We see no faces, but many hands extend upwards from the cavern’s brim. In the accompanying text, Swados writes: “It’s not any consolation, but I know I’m far from alone. Too many of us communicate from down here.” (Fig 3) In her most recent book, The Faraway Nearby, Rebecca Solnit considers: “The real story of your life is always all the way from birth to death, and the medical experts appear like oracles to interpret and guide even as they turn you from you familiar self, a dealer in stories, into mute meat, breathing or approaching last breaths.” Perhaps my misgivings merely reflect that innate need to solve all problems and always get it right, as I continue to listen to the stories of those who suffer and learn their language, so that I might ultimately truly hear, listen, and understand.

Bibliography

1. Baker, Bobby. Diary Drawings. London: Profile Books, 2010.
2. Berryman, John. In: Lavinia Greenlaw (ed), Signs and humours: the poetry of medicine. Calouste Gulbenkian Foundation, 2007, p.24.
3. Gould, Philip. When I Die: Lessons from the Death Zone. London: Little, Brown, 2012. Hitchens, Christopher. Mortality. London: Atlantic Books, 2013.
4. Holub, Miroslav. In: Neil Astley (ed), Staying Alive: real poems for unreal times. Northumberland: Bloodaxe Books, 2002, p.367. Marchetto, Marisa Acocella. Cancer Vixen. London: Fourth Estate, 2007. McCrum, Robert. My Year Off. London: Picador, 2010.
5. Sontag, Susan. In: David Rieff, Swimming in a sea of death: a son’s memoir. London: Granta Books, 2008, p.37. Sorescu, Marin. In: Lavinia Greenlaw (ed), Signs and humours: the poetry of medicine. London: Calouste Gulbenkian Foundation, 2007, p.97.
6. Swados, Elizabeth. My Depression: A Picture Book. New York: Hyperion, 2005.