From the December 9, 2022 Genetic Counseling Issue of the Transformational Times
The Power of Story--When We Truly Listen
By Jenny Geurts, MS
Jenny Geurts, who is the inaugural program director of the Master of Science in Genetic Counseling (MSGC) training program at MCW, reflects on her community engagement experiences and the impact volunteer work has on learners.
This year, our genetic counseling program had the pleasure of engaging with the Sisters Network SE WI Chapter which is doing amazing work in the Black/African American community to increase access to resources and information, advocate for change, and provide supportive sisterhood. While the invitation was for us to provide information about genetics to their group of cancer survivors and thrivers, I found myself on the receiving end of the knowledge….
So many of our community members reported stories of never being told about genetic counseling for hereditary cancer prevention and early detection. And worse, several were told they couldn’t have genetic testing, even when they were asking for it, never being referred to genetic counseling to assess their risk. What use is all our advances in genetic technology, when it is being kept from those in our community who need it the most?
The persisting health disparities in hereditary cancer faced by the Black/African-American population is the topic of a recent review article by Ambreen Khan, et al published in the Oncologist.
Our community members have so much to teach us, if only we are willing to listen.
The topic of my presentation at the 2022 Wisconsin Cancer Summit this year “Genetic Risk and Family History: How Sharing Stories Can Save Lives”, where it was heartwarming to see many members of the Sisters Network in person. The Summit theme this year was “The Power of Story,” and brought together patients, advocates, care providers, public health workers, scientists, administrators and more. I can attest that the mission of the Summit was met: Together, we learned how storytelling can be used to improve cancer health outcomes, empower patients and providers, and help us connect, transform, learn, and heal.
Sherri’s Story
Due to the generous spirit of one our clinic patients, I was able to tell Sherri's story at this year’s Summit.
A story where listening meant life or death….
For years her doctors didn’t listen, which resulted in Sherri being faced with death.
“...my father he was only 26 when he was diagnosed, his mother, brother, sister and my cousin, they all had it young…”
“I know this is not my normal — waking up tired, all day tired,”
“…no, it’s not just about me getting older, it’s more than that…”
The power of family history for cancer prevention was lost on Sherri, she would become a statistic in the widening health disparities seen in genetics and cancer care.
However, because of her resolve, determination, and faith, she persisted…. until finally someone did listen.
And this time listening resulted in the power of additional life to live, importantly a ~quality~ of life.
Sherri graciously allows us to amplify her voice, how her life was saved when someone listened, because of genetic testing and immunotherapy.
If your curiosity is peaked and you’d like to learn more, I’d encourage you to check out the Summit Recap to access recorded presentations, view slide content and learn more about the Cancer Stories Performance, which is a powerful stage production from the Wisconsin Story Project that honors the personal stories of people affected by cancer. The end result is profound, candid, and deeply human.
Narrative Reflection Exercises
We ended the two-day Summit event with a narrative medicine activity, led by Dr. Toby Campbell from the University of Wisconsin/Madison, where we attempted to capture the feelings about our experiences during the Summit with a six-word narrative. I’d like to share my reflection with the Transformational Times readers:
“Witnessed stories heal them….and me?”
This experience allowed me to deepen the impact of the Summit experience and forge the patient stories into my consciousness, helping me make meaning of the toll cancer takes on so many families. I hope that the Transformational Times readers will consider the situations where their patients have been generous with them, in the stories they shared, and trust they instilled. If only we are compassionate and humble enough to truly listen.
As part of our Genetic Counseling Seminar course in the MSGC program, learners participate in community engagement volunteering to promote a deeper understanding of the patient experience. Having just learned about another narrative exercise (the 55-word essay) at the Summit, I thought asking the students to try this activity might also help them further process their experiences in the community. In this exercise the writer must choose exactly 55 words for their narrative, resulting in the need to be extremely intentional about their word choice. The power of the 55-word essay was not only impactful for them, but also for me, as it was a whole new way for me to have a transcendent vicarious experience through reading their reflections. Several of my learners wrote 55 word reflections after participation in volunteer community events, and are highlighted within the Poetry Corner of this Transformational Times issue.
Creating a MSGC Mission Statement
When our program development started in early 2020, we were asked to create a mission statement, it was something we were obligated to do and at first felt very “corporate.” I certainly couldn’t recall the mission statement of the school I attended, and I didn’t understand the relevance of it, other than “checking the box” of requirements. But when we brought the team together to start working on it, that is when it really came alive to me.
The several months of developing the mission statement were painstaking. However, the considerations we took, and process we went through to land on these twenty-one intentional words, was so rewarding to us. We are delighted with our mission statement as we feel it truly represents what we are here to do.
Words matter.
This narrative exercise of creating a mission statement also really helped me understand the power of our words.
We hope this mission statement resonates with you as well, as either a provider, an educator, a learner, and/or a member of the community.
Acknowledgements
Special shout out to the dedicated work of Dr. Sandra Underwood, Debra Nevels, Raul Romo, Sharon Brown, Stephanie Newsome, Gigi Sanchez, Dr. Melinda Stolley, Dr. Charles Rogers, and others who cultivate relationships to ensure the success of community outreach activities.
Jenny Geurts is an Assistant Professor in the Institute of Health & Equity and serves as the Associate Director of Genetic Counseling in the Genomic Science and Precision Medicine Center at MCW. She has been in practice for over fifteen years and has specialized in a variety of genetic conditions including oncology, cardiology, neurology, gastroenterology, and endocrinology. She most recently has provided clinical care with an emphasis on inherited cancer conditions at Froedtert and the Medical College of Wisconsin Clinical Cancer Center. She is board certified by the American Board of Genetic Counseling.
