Self-portraits of illness: the gift of the gaze

“Oh my! I look like a little old grandmother!” she laughed when she brought the pictures out for us to look at. “I never was the most bashful person; I used to run naked as a child.”

Figure. Emptying the colostomy bag.

Figure. A camomile bath.

We sat together in comfortable silence for several moments before she spoke again. “Bathing is soothing. I put sachets of camomile in my bath; it's good for the stoma.”

She carefully placed the photograph face down on the table and went on to another, saying as she did so, “But you know, I thought it would help others, let them know they are not alone.”

This last statement provides us with her motivation. We never had the opportunity to discuss her own experience of loneliness in illness, but we know that she spoke strongly about the crucial role of support. She recounted that before her surgery she had tried to find a photograph of a person with a stoma: not a photograph that isolated a piece of the body, but that showed a whole being. It was a fruitless task. But the thought of letting others know they were not alone refused to leave her.

Why is there a lack of this type of “medical” photograph? A range of responses is elicited in the viewing, some of them more difficult than others. James Elkins suggests that certain pictures of the body do not exist because the body can be problematic to look at. It can provoke unwanted corporeal and cognitive responses; it touches us even at a distance.1

Here we have been given the gift of the gaze. This woman invites us to look, to learn. Look closely at her self-portrait in the bath and note what is elicited. We see the marks on her body: the stoma, a scar bisecting her abdomen, the appearance of bruising on her knees. We have a visceral response to it; our stomachs tighten. At the same time we feel a flutter of delight at her courage. Her head is not visible, and we are reminded of classical statuary that becomes changed over time. We also reflect on the Cartesian split that continues to haunt fundamental aspects of health care relationships: body/mind, doctor/patient, control/possibility. Her need is to show or reveal and at the same time to conceal and be anonymous. The photographs document a delicate balance between rival demands. There is always potential for this (or any other) photograph to be taken out of context, for its meaning to be subverted. These self-portraits serve to trouble our notions of how and with whom we construct categories of meaning in health care.

Her reason for creating these photographs was to show others that they were not alone. But alone in what? In having cancer, in having a stoma, in aging? It is now a question that we must ponder on our own, for this lively woman is no longer here to explain.

The photographs that she left push the boundaries of the clinical representation of the body in medical texts. Neither are they the ideal depictions we see in the popular media or in art galleries. The photographs create a place for images of being and the body that are not concordant with the dominant discourses of medicine, society and culture. In this era of “patient-centred care” it is striking that a woman undergoing a profound shift in her bodily sense of self should feel so alone in her experience, so unable to find a representation that reassured her.

Of course, our academic discourse may lead us away from her intent, which related to her search, before her surgery, for images of a person with a stoma. She wanted to see what she might look like, what new mark would be on her body. Because she had been unable to find anything, after her discharge from hospital she took pictures of herself in the bath, assisted by her loving partner. (Courage is often not achieved alone but in relationship.)

The marks of the surgery are visible: the camomile tea bags float in the tub, and she is central in the photographs. She is at home, not in a hospital bed. She is a woman living with a colostomy; she refuses the passivity implied by the role of “patient.” As we look at the photograph in which she is emptying her colostomy bag over the toilet, we perceive her need to reveal herself, her body, her experience, as whole. Through her decision to represent herself in a series of photographs, this woman revealed a rich arena where the personal and social aspects of a complex illness and its treatment can be articulated. In a digital sense, she has donated her body to science, opening new avenues for exploration and discovery in the information age. Her legacy includes these bold and powerful photographs. Through them she provides tangible evidence to people undergoing treatment for colorectal cancer that others have also survived these profound physical changes and have lived successfully with them on a daily basis. Awed by her courage and generosity, we feel deeply grateful to her.

Nancy Davis Halifax Ross Gray Alejandro R. Jadad