Yewande Okuleye reflects on the exhibition Close to the Bone: Patient Journeys Through Sarcoma at the Hunterian Museum, London.
In the world of medicine, where the body is frequently reduced to a series of signs, symptoms, diagnosis, and prognosis, there lies a profound need to reclaim the human experience that shapes every patient encounter. Close to the Bone: Patient Journeys Through Sarcoma—an exhibition currently on display at the Hunterian Museum—does precisely this. It invites us to explore the intimate, often unseen, intersection of art, medicine, and patient experience, challenging our perceptions of illness and the way it is represented. Sarcoma, a rare and aggressive cancer that targets the bones and soft tissues, affecting approximately 5,300 individuals annually in the UK, takes centre stage in this medical narrative. Far from being a single disease, sarcoma encompasses more than 100 distinct types, each of which ravages not just the body but also the spirit, forcing patients into a battle that is both physical and deeply emotional.
The emotional power of photography in medical narratives
Photography in a medical context is often seen primarily as a clinical tool—used for documentation, diagnosis, or research. However, within the medical humanities, photography transcends its clinical utility, becoming a powerful narrative device that bridges the visible and invisible aspects of illness. Susan Sontag, in her seminal work On Photography (Sontag 1977), discusses the evocative power of photographs, suggesting that they are more than mere records of reality; they are potent symbols capable of eliciting deep emotional responses from viewers. The emotional impact of a photograph, Sontag argues, stems from its ability to freeze a moment in time, capturing details and expressions that might otherwise go unnoticed. This ability to arrest time imbues photographs with a sense of immediacy and intimacy, drawing viewers into the scene and prompting them to engage emotionally with the subject matter. Although Caroline Seymour’s black and white photographs in the Close to the Bone exhibition trace the trajectory of Gabor, Vincent, Jessica, and Christine through diagnosis, surgery, and recovery, given the graphic nature of surgical imagery and copyright limitations, images from the exhibition were not included in this essay.
Despite the absence of the actual images, their significance remains integral to understanding the individuals behind the medical journey. The portraits give us a glimpse into their personalities and states of mind. This reminds us that they are more than patients—they are people with multifaceted identities: husband, wife, mother, father, partner and professional. These portraits not only reveal their humanity but also set the stage for understanding the complexities and depth of the medical journey they are on.
Photographs of the surgical intervention not only emphasise the physicality of the surgical experience but also invite viewers to witness the precision and care that go into each surgical intervention—decisions that require immense skill, experience, and empathy.
Seymour’s artistic choices of selective framing call our attention to the intensity of the physicality and vulnerability of the body. The mundane becomes profound as the controlled contrast, texture, and tonal range afforded by black-and-white film processing invite us to discern and feel a range of emotions. Our intimate proximity to the images in the gallery space invites us to reflect on our own physicality and the potential for our bodies to undergo similar experiences. Seymour’s photography makes us think about our bodies and vulnerability by stripping away the barriers that usually shield us from the stark realities of medical intervention, exposing the delicate, often hidden relationship between the body, health, and survival. Acting as both observer and witness, Seymour captures moments rarely seen. As Professor Tom Cosker, sarcoma surgeon, notes in the exhibition catalogue: “The photographs she has taken inside the operating theatre are unique. In my experience, I have never seen the procedures we undertake shown in this way” (Seymour 2024, 3). Trust is central to the relationship between the photographer and the patients. Unlike traditional portrait photography, where subjects are often active participants in their representation, sarcoma patients, especially during surgery, place an immense amount of trust in the photographer. This trust is not just about allowing the photographer into their most vulnerable moments but also about trusting that their stories will be told with respect and integrity.
Illness narratives: reclaiming agency through storytelling
In The Wounded Storyteller (Frank 1995), Arthur Frank emphasises the importance of illness narratives in helping patients reclaim agency over their experiences. When diagnosed with an illness, individuals often face a narrative crisis, where their personal stories are disrupted by the disease. Frank categorises illness narratives into three main types: restitution, chaos, and quest. Each represents a different way for individuals to come to terms with their illness and integrate it into their life stories. In Close to the Bone, patient narratives—captured through interviews—resonate with Frank’s concept of the quest narrative. The patients, confronting the invasive and life-altering reality of sarcoma, embark on a quest not only for physical survival but also for meaning, understanding, and a sense of agency over their lives. These narratives do not shy away from the chaos and uncertainty of a cancer diagnosis; instead, they embrace the complexity of the experience, acknowledging both the suffering and resilience that define the patient’s journey. Jessica, for instance, reminds us that life goes on in conversation with cancer: “In October, after my first treatment, when we planned to get married—and it was my birthday—I decided I wanted to get married before I lost my hair,” she says, referring to her second cycle of chemotherapy (Seymour 2024, 51).
The 69-page catalogue details the dramatic twists and turns, as well as the mundane and profound events, in the lives of the four sarcoma patients and their families. By including their voices, Close to the Bone challenges the traditional view of patients as passive subjects of medical observation, instead portraying them as active participants in their own stories. The patient narratives further enrich the visual representations, offering insights into the emotional and psychological impact of their diagnosis and treatment. These stories challenge the heroic metaphors often associated with cancer, presenting a more nuanced portrayal of the patient experience—one that acknowledges fear, uncertainty, and the complexities of living with a life-threatening illness.
The role of art in medicine: from documentation to empathy
Art has long played a role in medicine, from anatomical illustrations and medical photography to therapeutic practices like art therapy. However, its role continues to evolve, shifting from mere documentation to a more human-centred approach that fosters empathy and understanding. Caroline Seymour’s photographs in Close to the Bone exemplify this transformation by inviting viewers to engage with the human side of surgical procedures—an aspect often overlooked in clinical settings. This approach echoes Mark Gilbert’s Saving Faces series, produced in 1999, where Gilbert painted portraits of patients disfigured by cancer, trauma, or congenital conditions undergoing surgery. Both projects aim to humanise the clinical experience, offering patients a way to see themselves reflected in a medium that values their individuality and humanity.
Transforming perceptions through the confluence of art, medicine, and humanity
Close to the Bone is not merely an exhibition; it is a transformative experience that challenges viewers to confront the precarity of illness, surgery, and survival. Through the interplay of evocative photography and deeply personal narratives, the exhibition bridges the gap between the visible and the invisible, the clinical and the emotional. It invites us to see beyond the surface of medical procedures, urging us to engage with the human stories that lie beneath. Like the incisions we see in the photographs, Close to the Bone opens and holds space for art and medicine to intersect, reminding us that behind every surgical incision is a person with a story—one of fear, resilience, hope. Even unexpected emotions like laughter, and joy. As we move forward in the field of medical humanities, exhibitions like Close to the Bone will continue to play a vital role in shaping how we problematise and broaden our conceptions about the patient experience. Art in medicine interrogations will challenge us to rethink the narratives we construct around illness and to recognise the power of art in fostering empathy, understanding, and, ultimately, healing. By documenting the entire journey of sarcoma patients and engaging with the ethical implications of representation, Close to the Bone offers a narrative that is as much about the ethics of storytelling as it is about the story itself.
The patient is not a stranger within a frame on the wall. The surgical incision with exposed muscle being washed with saline solution is not the abject body. Patient bodies stand in for all bodies—those of friends, family, and colleagues. We are all potential patients, sharing in the vulnerability and inevitability of illness. This exhibition challenges us to transcend the clinical gaze, urging us to recognise and connect with the shared human experience that lies at the heart of what it means to be alive. It is a call to empathy, to remember that in the end, we all belong to the same fragile and interconnected community.
Close to the Bone, Hunterian Museum at the Royal College of Surgeons, England, is a free exhibition open to the public until September 14, 2024. It runs from Tuesday to Saturday, 10 am to 5 pm, with the last recommended entry at 4 pm.
About the author
Dr. Yewande Okuleye is a polymath at heart, with an academic background that spans disciplines as diverse as science, fine art, the history of medicine, literature, and health humanities. She also serves as a Trustee of the Hunterian Museum. She is on Twitter @yewandeslondon.
References
Frank, Arthur W. 2013. The Wounded Storyteller: Body, Illness, and Ethics. 2nd ed. Chicago: University of Chicago Press.
Seymour, Caroline. 2024. Close to the Bone: Patient Journeys Through Sarcoma. Exhibition Catalogue. London: Hunterian Museum.
Sontag, Susan. 1977. On Photography. New York: Farrar, Straus and Giroux.
