The Literary Remedy: Therapeutic Creative Writing

fictionreboot2Today’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.

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Cancer Focus Workshop

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 @svjdempz

 

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For the LOVE of Medical History

DailyDose_PosterOn today’s MedHum Monday, we present a post from the Dittrick Museum of Medical History. The original post (by Catherine Osborn) first appeared as part of the #MuseumWeek posts, and it demonstrates beautifully the importance of history and other humanities to the study of medicine. We provide part of this work here, but see the site for brilliant images that further illustrate the medhum intersection.


It’s not uncommon for the Dittrick Medical History Center to be referred to a bit like a cabinet of curiosities,  a niche museum, or perhaps more kindly, a “hidden treasure.” Although we’ve always worked to make collections accessible and major public engagement efforts are underway, we still often have to make the case for the (sometimes not so) implicit question “Why should I care about medical history?”

The answer tends to go a little like this:

Medical history is the history of how we come into the world. Our Re-conceiving Birth gallery is not only about doctors, nurses, and midwives — it examines the experiences of women and babies from the 18th century to the 1940s. Beyond the particular questions of labor position, pregnancy diet, and types of forceps, this gallery calls visitors’ attention to larger, still pertinent questions: Is birth a normal or pathological event? Who’s experiences and knowledge are important during labor? Should birth hurt? How are difficult decisions made when both the mother and infant are at risk?

The progression of pregnancy. Spratt, 1848.
One of several images posted on Dittrick Museum’s blog–see the original for more [For the love of Med…]
By framing these questions through history, we hope to add to modern debates that these are not new concerns and that “traditional” approaches are not singular or homogenous.

Medical history is the history of how we change and respond to our environments. Humans have faced a range of emerging health concerns through travel to new places, movement into cities, changing diets, and exposure to industrial hazards. Many of the museum’s exhibits examine both the impact of these shifts, such as crowded city-dwelling facilitating the transmission of infectious diseases, and how we respond to these novel health environments. For example, Cleveland was racked by a deadly and disfiguring smallpox epidemic in 1901 and 1902, which was halted through a coordination of efforts to develop and widely distribute a safe vaccine.

These stories speak to the dynamic relationship between humans and their environment and cautions against assumptions that medical progress has eliminated any risk of new health challenges [read more]

Public Access, Outreach, and Health

DailyDose_PosterMedicine is not practiced in a vacuum; cultural and geographical context matter, and the community shapes both innovation and practice. Cleveland’s history reveals the remarkable collaboration of medical institutions and the public—it does not rest only in the hands of physicians or with distant hospital systems. Now, as then, health is everyone’s concern. But how do we engage the public? And how can we make it plain that the public has rights–and power–to shape medicine? Historically, individuals had a greater share in shaping their care out of necessity. The Dittrick Museum’s collection of herbals and medical remedies is a testament to just how much people took health into their own hands. Dr. Culpepper’s Last Legacy (1655) contains prescriptions for do-it-yourself potions [from our instagram]: Untitled-1Obviously, we are not mixing witches’ brew these days, and certainly no doctor or pharmaceutical company is going to publish recipes for homemade medicine. Then again, a resurgence in homeopathy and plenty of websites that promote home-remedies suggest that there is an audience…And a quick scan reveals plenty of misinformation, too. How can an interested public find good information about their health and health choices? Whose responsibility is it to make access to care, and even information about care, easier and more intuitive? The patient often does not feel like an empowered part of the medical process. A few years ago, The Atlantic published a piece called “Power to the Patients” that took issue with the traditional doctor knows best mantra: “it is only by empowering patients – entrusting them with greater responsibility and putting opportunities for self-directed care into their hands – that health care can be made significantly more efficient and effective.” [1] But, the article goes on to admit, sorting out how you can be empowered in the midst of a health crisis is probably too late. Let’s take it a step further: do healthy people feel empowered about their health? Do they understand that they are stake-holders? Possibly not. The New York Academy of Medicine is taking a community approach to this problem. They have a renewed dedication to “urban health,” and seek to address the broader determinants of health, and “the importance of interdisciplinary approaches to care.” Their new logo sports the phrase: Healthy Cities. Better Lives. It’s not a new idea. It’s a return to an old idea–one that thrived in cities of the 19th and early 20th centuries. Cleveland, Ohio, is one brilliant example. Polio hit urban centers hard,  leaving debilitated children in its wake. The iron lung could keep people alive, but the world needed a vaccine, and then a systematic way of implementing vaccination protocols. A combined effort of doctors, philanthropists, the media, and everyday people led to record-breaking changes. Salk’s vaccine dropped cases by 90% by 1962 in Cleveland, and led to the eradication of the disease in the rest of the US. Public awareness and empowerment did what laboratory medicine could never hope to achieve on  its own. Community engagement, public empowerment, and (key in the polio crisis) access to care and information wins the day. And that returns us to the first question. How do we engage and educate the public? Whose job is it?

The short answer: it’s everyone’s job. But I want to take a moment and focus on the power of history.  Museums and libraries–and institutions generally–have an important role to play. To address misunderstandings about medicine, and crucially about who controls or drives innovation, the Dittrick has developed an interactive, digital exhibit and attendant programming called How Medicine Became Modern. The exhibit will be a free-standing digital touch-screen wall, 10ft x 4ft, in the main gallery, providing the story of our shared medical past and cultivating means of seeing the relationships among culture, society, and health. But we have also begun two types of public outreach as well–“conversations” that begin with the history, then allow panels and round tables to discuss medicine today. The story of polio and others like it remind us: we are part of this story. History records more than the names of famous doctors. It demonstrates the innovation, the boldness, the concern, and the action of every day citizens. Medical humanities, or health and humanities, is all about the human story at the core. Let’s work together to bring that story out, and to be part of it. [1] Clayton M. Christensen and Jason Hwang. “Power to the Patients” The Atlantic 2009