Today’s Friday Fiction features the work of Sharon Dempsey, a journalist and author who facilitates writing workshops for those affected by illness. In her work today, she shares how writing becomes an act of patient empowerment, fiction serving as a voice and a means of controlling and absorbing the chaos of illness.
medhum Fiction|Guest Post By Sharon Dempsey
Medicine, in essence, is a transaction of stories. The patient’s telling of symptoms, the interpretation of evidence and investigation on the part of medic, is the basis of the diagnosis process.
To seek expression out of illness is a natural reaction, yet the power of story is not fully harnessed in medicine. Health and disease are concerned with life and death, and are closely connected to the physical, social, psychological and spiritual nature of humans. So often we have focused on cure over care. Narrative medicine seeks to redress this imbalance.
My personal interest lies in the the relationship between story and medicine: to look at how we use narrative in illness and to how we might use creative writing and literature as an effective means of communicating, to help voice the concerns of the patient, and to help the physician to understand the impact of lived experience of illness. When patients take ownership of their illness narrative and are active in seeking the information they need, they gain greater insight into how they can best make decisions regarding their treatment. In short, to understand and speak about their illness experience is to be empowered in the face of illness and mortality. Research has shown that writing about traumatic, stressful or emotional events can be beneficial for both physical and psychological health, in non-clinical and clinical settings. To tell a story is a most human transaction.
My awareness of this relationship between literature and writing to illness and medicine came through personal experience: in caring for my son Owen who was diagnosed with an ependymoma brain tumor at the age of two. Despite surgery, chemotherapy and radiotherapy, Owen died when he was six. I found solace in writing and reading. My experience of grief and bereavement led me to see a direct correlation between my ability to cope with what I was reading and how I was able to express my grief through writing.
Part of my work now, twelve years after Owen’s death, involves designing and facilitating therapeutic creative writing workshops for patients affected by cancer. Delivering the workshops has reaffirmed my belief that writing and reading literature generates a sense of well-being and helps the participants to deal with the emotional repercussions of cancer.
Being part of a creative writing group has many benefits. Through writing, participants can take control of their illness and process the changes that the illness and treatment has made to their lives. This is what the illness narrative is about: the writer can find expression for emotions and feelings, and this in turn allows them to feel validated, to be understood and to gain self awareness, while providing a platform to share with other like-minded people.
Gary Hunter, a participant of our workshops, states that they enable him, “to articulate feelings that might otherwise remain unexpressed”–
“In a way, writing gives me back a modicum of control over my situation and helps me deal with my diagnosis and the effects of living with cancer. I have a creative outlet for my frustration, uncertainty and anger,” he said.
After a workshop, Gary felt “a sense of achievement, especially when [his] work has been enjoyed and praised”; Moreover, the workshops provided him “an excellent and welcome forum for expressing one’s feelings and concerns in a secure, confidential and non-judgmental environment, in the company of people who understand the cancer experience.” Through his fiction and memoir writing, Gary has explored cancer’s impact on relationships, self-image, faith and even the loss of faith. Other participants have shared that the workshops offer healing, empathy, release, inspiration, validation and empowerment.
The monthly workshops that I facilitate are run by a charity called Cancer Focus Northern Ireland, and provide an opportunity to reflect on personal experience in a safe, supportive environment. We state that no previous writing experience is required, and the workshops are open to relatives and carers of those affected by cancer, too. Illness never affects only the patient, even though illness narrative is often the expression of the patient’s lived experience of illness. Through communicating illness, the patient (and their families and perhaps even their doctors) gains a sense of control, finds comfort in expression and consolation in being heard. This sense of seeking clarity and meaning through writing is present in my creative writing workshops, even though cancer is not the primary focus of our writing. We have explored memoir, flash fiction, poetry, script writing, journal writing, and nature writing and we are about to embark on a genre series starting with crime writing. The act of creating and writing is more important than the subject, yet themes and set exercises provide a structure to conduct the writing. Our work is a means to an end in itself – our creative self- expression. Yet I can see there is much to be gained for physicians and carers, too, as they witness the power of storytelling in action.
As writers, the patients can bring order to their world. They can employ creativity, punctuation, grammar, structure and format to a world of confusion, emotional turmoil and often sadness. Twelve years after my son’s death, I still write for him and about him. It’s my treatment. In facilitating and participating workshops, I have recognized the value of humanizing the medical experience, and honoring the shared story.
ABOUT THE AUTHOR
Sharon Dempsey is a journalist, health writer and creative writing facilitator based in Belfast, Northern Ireland. Follow @