Our Heart Speaks Gives a Voice to People with a New Disability

The process of telling our stories has therapeutic value for the writer and the reader.

Jun 21, 2019

Storytelling is one of the oldest ways of communicating. But storytelling isn't just for repeating fairy tales and legends, and it isn't reserved for the nursery or around a campfire. Storytelling is how we understand and make sense of the world around us. And, storytelling orally or by the written word is also therapeutic and can heal emotional trauma and stress.

Giving a voice, a way to tell their story, to people who are experiencing a new medical condition or disability is the purpose of the nonprofit Our Heart Speaks that was founded in 2015 by Dr. Keith W. L. Rafal and supports an international patient stories project.

The organization's primary mission is for people who have been successful finding meaning and purpose despite their disabilities to share their stories (written word, poetry, art, or music) as a way of healing themselves and the people who read them.

Rafal, currently an assistant clinical professor at Brown University and adjunct faculty member in the Department of PM&R at Tufts University School of Medicine, is a rehabilitation specialist. He has considerable experience working with people with chronic disabilities from stroke, brain injury, spinal cord injury, and chronic pain.

What really gets me interested is that we do a pretty decent job working with people in terms of saving lives and doing the medical care, and even doing some of the day to day rehabilitation which is getting people moving and getting them back into the community,” Rafal said in an interview with Hand in Hand Show (part of Strokefocus).

"But what has been lacking is really getting to the essence of who we are. What happens to us when we've had a stroke, a brain injury, a spinal cord injury, or other kind of acquired disability? And looking at ways that we can assess that."

He explained that the patient stories project said that the impact on the listener or reader is a very important component. “Can others learn from this? Can they be inspired? Can this make a difference in their lives?”

Rafal calls this the “culture of possibility” and explained that this is something that is not understood or observed by the medical community. The focus is on medications and physical rehabilitation, but it misses how the patient is impacted and what they are feeling. Rafal hopes that patient stories can be a blueprint so that people who provide patient care can begin to see what is possible. He credits the work of Austrian neurologist and psychiatrist Viktor Frankl's work as the inspiration for his project.

The stories on Our Heart Speaks are inspirational. Janine Shepherd was rendered a paraplegic in a cycling accident when she was a cross-country skier training for the Winter Olympics. Her doctors never expected her to live and when she survived, they told her she would never walk again.

Her turning point came when she was watching small planes flying overhead. She told herself, “If I can’t walk, I’ll fly.” She began taking flying lessons while still in a full body cast and had to be lifted into the aircraft. She had her private pilot's license within a year and later earned her commercial license and instructors rating.

Shepherd is a patron of the Australian Spinal Research Trust that is working to find a cure for spinal cord injury, and she speaks publicly to people who are learning to cope with physical injuries. She is now able to walk and had children even though she was told she couldn't.  Shepherd is a pilot, aerobics instructor, and the author of five motivational books.

Bill Hrncir, another participant, wrote Recovery: it's not a sprint – it's a marathon and is a 12-year stroke survivor. He said. "I was an athlete, a super dad, a loving husband, but overnight I became the poster child for stroke. I was running when I had a knock me down, take my voice away, throw me into a wheelchair stroke." He has personally experienced “hemiparesis (or partial paralysis), spasticity (stiffness), depression (though I jog and bike to combat it), and aphasia (wordlessness).”

Hrncir said he is still a work in progress, but his expectations didn't always equal reality when it came to recovery.  “I honestly thought I would be out and about in no time. My right arm and leg are coming along at a snail’s pace; nonetheless, I am improving. My brain still holds my words hostage from time to time. My improvements become progressively smaller nowadays, but I won’t give up!”

Hrncir and his wife Deedee co-founded the Laredo Stroke Support group. It began five years ago with five survivors, now, they have monthly meetings where 40 t0 50 people attend and they offer services and resources for stroke survivors and their families.

The hardest thing Hrnci has said he had to do was to speak in public after his stroke. He wrote: “Despite barely being able to correctly write and spell a word, I did just that! I spoke in front of civic organizations, college groups, and elementary schools. Over the past four years, I have given 59 speeches.”

Rafal hopes that when there are enough motivational  personal stories and feedback from readers, his team will be able to figure out what was helpful or inspirational. That information can be used by the organization to reach out and help more people whose lives were changed by sudden disabilities.

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BONNIE RIVA RAS, EDITOR & WRITER
Bonnie Riva Ras has dedicated her life to promoting social justice. She loves to write about empowering women, helping children, educational innovations, and advocating for the environment & sustainability.