"I MERELY TOOK THE ENERGY IT TAKES TO POUT AND WROTE SOME BLUES." - DUKE ELLINGTON
Spit it Out, an award-winning documentary codirected by Jeff Shames and Jonathan Skurnik, follows the poignant journey of Jeff Shames in his efforts to find self-acceptance as a stutterer.
In one of the delightful opening scenes, Shames is attending a workshop at a conference held by Friends, a support organization for children who stutter and their families. The children are outdoors ready with their speech monsters in hand, an art exercise depicting their struggles with stuttering. “We need to show them who is the boss of our talking!” says the group leader. “Put your speech monster inside the rocket!” The kids crumple up their speech monsters, dump them into a rocket, and blast it off into space, giving back the power to the children.
Each day, we humans participate in a common activity—the ancient craft of storytelling. Reading the daily paper, watching movies, or catching up with friends—sharing or listening to stories is at the heart of our nature. But can telling your story have benefits for your health? “Yes, most definitely,” says Paul Browde, actor, psychiatrist, and narrative therapist, “it made all the difference to my health and life."
Sharing the healing power of storytelling is a narrative exercise that Browde and his fellow actor Murray Nossel, an academy-nominated documentary filmmaker, have engaged audiences in for the last 14 years through Two Men Talking, a live unscripted performance that has been showcased to acclaim in New York, London, and South Africa. On stage, the two men explore a variety of stories: growing up white, Jewish, and gay under apartheid in South Africa; homophobia; racism; AIDS; and most importantly, their friendship and the passage of time.
Each October, Post-Polio Health International hosts the We’re still here! campaign, to raise public awareness of both the successes and the current health needs of polio survivors. In the spring of 2009, I attended the New York premiere of The Polio Crusade, a PBS documentary directed by Sara Colt for the American Experience. If you are from that generation, the story of polio is not an unfamiliar one. The film catalogs the race for a cure and the public health campaign that resulted, inspired by Franklin. D Roosevelt. Watching the footage of the beginnings of polio history was compelling, but the film also highlighted what is less known to the wider public—the story of polio survivors estimated at 750,000 in the U.S. today.
Each year in the U.S., 765,000 American youths, about one every 40 seconds, visit an emergency room for a traumatic brain injury (TBI). Compounding this complex diagnosis, families have to navigate an
often-frustrating maze to access health care or discover the lack thereof. “Whether you are prince or a pauper, you face the same struggle across the U.S.,” says Patrick Donohue, founder of The Sarah Jane Brain Project (SJBP).
Donahue knows the challenges parents face firsthand. The Sara Jane Brain Project is named after his daughter, Sarah Jane, who at 5 days old was shaken by her baby nurse, breaking four ribs and both collarbones and resulting in severe pediatric acquired brain injury (PABI). From the outset, Donahue became harshly aware of what families of children with brain injuries contend with—an uncoordinated system of care, a medical issue with minimal research dollars, and haphazard treatment options.
How people cope and subsequently learn to live well while dealing with a progressive medical condition is a central theme in my health
advocacy writing. Later this year, I will be interviewing Deshae Lott, PhD, a prolific writer and health care advocate. She has written widely on subjects related to ventilator dependent living, spirituality, and health care access for persons with disabilities.
In the following essay, "No Way Out But In: Responding to Chaos Positively with Forgiveness and Grief", Deshae walks the reader through the challenges of a week in her life of living with Limb Girdle Muscular Dystrophy. In this piece, Deshae shares her own acquired model of coping, “Whether much is going awry or right, I restore my inner serenity and well-being each day by using prayer and meditation, and processing grief and forgiving.
No day seems to pass without my using these mental resources,” she states. Her mission is to offer encouragement to those who struggle with the emotional stresses of complex health concerns.
Janne Kouri, President and Founder of NextStep Fitness, a state-of-the-art specialized gym facility in Lawndale, California, is an advocate with a focused dream: “…to expand NextStep Fitness in communities of
need throughout the U.S., so people living with paralysis or disability would have access to community-based fitness options. This is a nationwide problem, and it needs to be addressed,” he says.
This mission is inspired by Kouri’s own journey. In 2006, while playing beach volleyball with friends, Kouri took a break and dove into the water to cool off; he hit his head on a sandbar and was instantly paralyzed from the neck down. He then began a challenging rehabilitation for his spinal cord injury at Fraizer Rehab Institute in Louisville, Kentucky. His background as an avid exerciser and former college football athlete at Georgetown University equipped him with a unique sensibility for tackling the demands of his recovery.
One of the most memorable people I've interviewed in my travels is Ken Kunken, Deputy Bureau Chief of the Nassau County District Attorney's office. Over 30 years ago, Kunken suffered a spinal cord injury at age 20 while playing football at Cornell University, paralyzing him from the neck down. Despite his life-altering injury, Kunken's gifted intellect and perseverance afforded him an impressive string of academic and professional achievements. Ken would be the first to say these pale in comparison to becoming a Dad. "Being a father is my proudest accomplishment", says Kunken. When Kunken and his wife, Anna, decided to have a family, they sought help from The Miami Project- an organization specializing in fertility issues for paralyzed males.
An interview with Brooke Ellison, March 2010:
What is the role of hope in medical care? It is a complex and vital one, and it will soon be the focus of a six week elective course, The Ethics of Hope. The course will be taught to second year medical students at Stony Brook University Medical center this coming March.
The instructors are Brooke Ellison, 31, a doctoral candidate in sociology, and Steven G. Post, Director of Medical Humanities and Compassionate Care at Stony Brook University. They make a strong case for examining the role of hope in medical care, a perspective that is not commonly a part of the training for medical students. “I want to take the subject of hope out of the philosophical realm and provide students a structured way of thinking about it,” Ellison states.
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