Wednesday, June 29, 2011

Genetics Alliance Conference Presentation

I thought I would share my experience of presenting this past weekend at the Genetic Alliance on storytelling. My initial response to the request to speak about story to an organization involved in genetic disease was panic. My interest in genetics and how to encourage gene expression to foster healing of mind, body and soul through story was (and is) an important part of my personal study but I never considered myself as having an expertise. As I met the other presenters I learned that the focus of their use of story was to inform, advocate and provide support for those facing the challenge of genetic disease. They were intrigued by my understanding of the genomics of storytelling and healing. The focus of my presentation was to suggest that an understanding and study of the processes of gene expression, the creation and telling of story, and the ultradian cycles of learning, creativity, and activity/rest could suggest more effective approaches to foster healing of mind, body and soul.

I shared my own experiences with individuals facing the challenges of chronic and acute illness and with training counselors dealing with war and torture trauma in Liberia and Thailand. I also cited research on psycho/social genomics and the role of the arts. Finally, I presented the positive results of a study on Narrative Exposure Therapy that uses a storytelling process. In the NET study brain scans showed that the hippocampus of those who were suffering PTSD increased in activity and size after participating in four to eight sessions. (PSTD suffers' hippocampus are usually smaller than control groups.) This would indicate that NET story approach actually fostered neurogenesis on the molecular level.

Finally, throughout the session I shared stories but the one with the greatest response was the story of my experience with a tribal doctor in the Alaska. When asked if she still had visions, dreams and stories. She said "No." When asked "Is it because you living your vision, dreams and story?" She said, "No" again. After a pause she leaned forward and said, "I am my vision, I am my dream and I am my story." I also mentioned my experience in Liberia in which they added "We are our family story, we are communities story, and we are our clans story." I shared how stories are not products outside of ourselves but are actually who we are. This is a concept that from a genetic and epigenetic perspective is understood and affirmed in discussions by advocates to scientist. By the end of the conference I felt more confident and affirmed in my understanding and knowledge of the role of genomics in fostering healing. A humbling experience to say the least. I learned so much from so many good people.

After the session a teenager came up to me and asked if I would help her tell her story. I said, "Yes." I found that she had a metabolic genetic disease from birth that usually leads to death within a few days of birth. She spoke of what it is like knowing that she could die at any moment and actually has been in danger so many times that she could not count. As I helped her with her story I was touched and more than a few times brought to tears. In fact several times during the conference I was brought to tears. Not, much more to say about this but we will continue to work together on her story.

As usual talk of collaborations took place and two possibilities are all ready in the works. I know that the staff spoke of adding a greater focus on healing using the arts and storytelling. We will see what is next.

Below is the mission statement of the Genetics Alliance and a website

Genetic Alliance Mission Statement
Our mission is to promote awareness and understanding of genetic disorders so that high quality services for people affected by genetic conditions are developed and made available to all who need them.

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