The Birth of a Student Researcher

“Healing begins in the imagination,” Dawn Thompson, a program coordinator for Write Around Portland, said this to me in a meeting last Thursday morning. I love this statement. It ripples with meaning and holds some intuitive truth.

Dawn and I were meeting to discuss curriculum design for a pilot study being developed by a group of researchers at the Helfgott Research Institute. The project proposes to examine “writing in community” as a means of transformative change for people diagnosed with Fibromyalgia and Chronic Fatigue Syndrome.

Why Writing?

Excellent question. And, I will add one, what does “writing in community,” mean? The idea for the study came from an experience I had before moving to Portland, Oregon. I was then practicing massage in a small rural community that was a Petri dish of sorts. I saw my clients at the grocery store, the café, and out in the mountains. In a sense we lived together. But the community didn’t come together for many things. I created the Mt. Shasta Writers Series and invited regional poets, whose work related to rural living, to come to town and give readings. People turned out in droves, sixty to eighty folks to a poetry reading. Out of that grew a monthly poetry open-mic. Somewhat unintentionally, we had fomented a cultural movement. People from different walks of life were gathering to hear live culture born from their home ground. I like to think this strengthened the weave of our connection with one another. One client’s case in particular stuck out. She was working hard towards change but was stuck. I came to work one day after a reading and open-mic and there was a long message on my voice mail. The event had catalyzed a change in her perception of her situation. From that moment she began initiating changes in her circumstances.

If healing begins in the imagination, how can this be delivered to people feeling decidedly unimaginative and stuck, like my client? Writing is particularly well suited to answer this question. However, most often we consider writing to be a solitary activity, the pensive writer alone with a cup of coffee or tea, gazing forlornly out as streaks of rain run down the fogged window. There’s nothing wrong with this picture – sometimes that’s me and I relish the time to be there like that with my thoughts.

It has been well documented just what social creatures we humans are. Before we gathered at cafes or bars to hear the latest news we were gathering around the campfire. In pre-history it was around the fire that stories were told and these stories were essential to continuing the fabric of the tribe. I think we are hardwired to like to tell and hear stories. Something changes when a story moves from words on the page to words in the air – somebody hears you. Things change.

And this is what I wanted to research when I approached the staff at Helfgott – not just writing, but sharing writing out loud, listening to one another’s stories. Using the inherent power in this medium to allow people to catalyze change in their lives.

What Next?

Thus began my odessey as a student researcher. It’s not all fun. There are hours at the computer reading dry and densely written research studies with impenetrable layers of statistics and conclusions. It was another language. This process, called the literature review actually bore fruit. I began to learn the language for one (though am still hopelessly poor at understanding all the statistical numbers). More important, two threads emerged. There was existing research on what is called “expressive writing” though none on a community-writing model. Second, I came to understand something of the struggles encountered by people with Chronic Fatigue Syndrome and Fibromyalgia (and the struggles of the medical community attempting to help them).

Anecdotes abound when it comes to the power of writing but anecdotes don’t generate NIH funding. Nor do they pave the way to real understanding at how well something like this might work and what exactly will it offer people.

Interesting Background Research

There is a history of research on writing in a medical setting. It is generally termed “expressive writing.” The pioneer of this work is James Pennebaker from the University of Texas. His model involves short periods of solitary writing about a specific traumatic event, repeated over a few days. The results were favorable and studies have corroborated his findings. The other interesting bit of research done on the writing process has examined the effects of writing poetry on medical students. It was found to help them become more empathic towards their patients and be better listeners. Poetry writing has become a mainstay in many medical school programs.

Just last week I came across an article on the New York Times website citing a study conducted by the Lombardi Comprehensive Cancer Center in Washington, D.C. They were using a writing model based on Pennebaker’s research. Patients were asked to write in the waiting room of a cancer care clinic. The researchers concluded that their research “provide(s) support for future efforts to move beyond efficacy studies of expressive writing into community- and clinic-based effectiveness trials.” This study was published in the February issue of “The Oncologist” and can be read online. Strangely enough writing has yet to break out of these two models. That’s where we hope to come in!

Why People with Chronic Fatigue Syndrome and Fibromyalgia?

The short answer is because that’s what Dr. Heather Zwickey, Director of the Helfgott Research Center, said. I think the real answer is longer than that – she just wanted me to discover it for myself. I think I’m getting there. I could bore you now with those impenetrable layers of statistics, but I wont. Quite simply the available and effective care for people suffering from these diseases is limited. There are: medications, cognitive behavioral therapy (CBT) and support groups, exercise programs and, alternative medicine interventions such as acupuncture and/or naturopathy. Most patients end up trying some mixture of these with the goal often being managing their symptoms and trying to improve their quality of life. Success is varied if it comes at all. This is not to say that people don’t get better, some do. The quote below was taken from the NIH website discussing the challenges facing people with these diseases.

“Providing social support and education about one’s disease or disorder has been shown to be an effective means for improving the health care status of individuals with chronic diseases. Studies are currently underway focusing on patients with fibromyalgia to advance understanding of how social support and education interventions may be helpful to these patients as well. (Source: excerpt from Fibromyalgia Research Challenges and Opportunities: NIAMS)”

There is a lot of interest on figuring out effective ways to work with these diseases. We are hoping to add something meaningful to the discussion.

The Model is the Key…

I mean the curriculum model that we use. Now this part of the process has been fun!