The Power of Story--When We Truly Listen

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. 

Bike vs. Auto

 From the October 21, 2022 issue of the Transformational Times

Guest Director’s Corner 

Bike vs. Auto 

 By Cassie Ferguson, MD 

Dr. Ferguson discusses how empathy can lead to a deeper connection with patients… 

Two weeks ago, I got a call that no parent is truly ever prepared to get, even those of us who spend much of our lives “dress rehearsing tragedy” (Brené Brown, Dare to Lead). I was driving home from a shift in the Children’s emergency department (ED) when an unfamiliar number popped up on my phone. I immediately got a sinking feeling in my gut and answered quickly. It was my oldest son, Ben. 

“Mom, I got hit by a car but I’m okay. I just kind of hurt my leg.” 

Breathless, I paused and tried to find the next right thing to say. 

“Where are you, Benny? Who is with you?” 

“The police are here. Do you want to talk to them?” 

The police?? Suddenly the image I had in my mind of a minor accident was replaced by one that included lights, sirens, and caution tape and I could feel myself getting pulled into the mode I naturally revert to when I’m running a code: gather information quickly, prepare for the worstcase scenario, plan the next steps. I cleared my throat and spoke with the officer who explained what had happened in far more detail than my brain—now fully in flight or fight mode—was ready to hear. 

When I think back to that day, it is that retelling of exactly how my son was hit, how he rolled up onto the hood of the car, and how he was thrown back down to the ground, that still undoes me. It is hearing from Ben that he was riding his bike home from school and decided to turn to get a chocolate chip cookie from the neighborhood bakery just before he was hit that brings me to my knees. 

That night as my son and I sat in my own ED getting films and waiting to hear about the next steps, I thought about all the mothers whose injured children I’d cared for—children far more seriously injured than Ben. Children whose lives were forever changed by their injuries. Children who had died. I thought of all the exquisitely painful details those mothers had to hear and then live with for the days, weeks, and years that followed. And it struck me how little we do to prepare them for what it will feel like to live with those details. How little we prepare them for the searing anger that will suddenly take hold of you when you see your child wince in pain; for the welling up of sadness when you’re reminded of what your child will miss out on because of their injury; for the intense terror that will grab you when you drive by the scene of the accident. 

We have had so many people reach out to us since Ben was hurt, and the love that has surrounded him and our family has been incredible. I’ve observed that in these encounters the two words I hear the most from those intending to comfort and lift up are “at least.” At least he was wearing his helmet. At least he was not more badly injured. At least the driver stopped. At least… And that is all true. I am extraordinarily grateful that Ben is okay, and that his leg will heal. And I say those same words frequently in the ED intending to support my patients’ families after close calls with tragedy. I believe that while it is not necessarily in our nature, our culture prompts us to seek and point out the positive. As caregivers we are taught to be useful and provide hope—as a profession, we value optimism, grit, and resilience and these values are passed onto our patients. 

With some reflection, however, I can see that this approach is also a way to create separation between me and the person for whom I am caring; a way to put a safe distance between myself or my children and a similar, imagined tragedy. And yet empathy requires we get up close. It requires that we connect with something inside of ourselves that knows what it feels like to be them. This is not a knowing that comes from our own experiences or imagining what it would feel like to “walk in their shoes.” This is a deeper knowing that arises from vulnerability; from a willingness to be open to our own suffering, and to know our own darkness such that our care arises not from pity but from a shared sense of what it really is to be human. 

Up close we can just sit and let our presence be a signal that we are there and that we are paying attention. Up close we can use the sacred gift of touch to heal. Up close we can ask questions like, “What does it feel like to experience this as a mother?” If you asked me that question right now, I would tell you that I feel angry and sad and afraid. I would tell you that during the last two weeks I’ve experienced guilt, overwhelm, and anxiety. 

And we might notice, the two of us, that just by asking and answering that question, we can find some kind of relief, some sense of rest in the knowledge that we are not alone. 

Cassie Ferguson, MD, is an Associate Professor of Pediatrics (Emergency Medicine) at MCW and the Associate Director of the Robert D. and Patricia E. Kern Institute for the Transformation of Medical Education.

Mentorship is a Partnership

December 1, 2022

From the December 2, 2022 Global Health Issue of the Transformational Times

Perspective/Opinion 

Mentorship is a Partnership 

By Laura D. Cassidy, MS, PhD  

Dr. Cassidy, the Associate Dean of Global Health, has been a long-term mentor for the Dr. Elaine Kohler Summer Academy of Global Health Research program.   

Being flexible and resilient are important and unexpected skills that medical students develop as they embark upon global health research. Unlike a highly structured medical school experience, students learn to adapt when things do not go according to plans. They pause, engage in the culture, and practice patience and kindness. 

I learned as much from my medical students as they did from me—if not more.  I have enjoyed mentoring many PhD students and, in 2018, I had the wonderful opportunity to mentor my first medical students in the Dr. Elaine Kohler Summer Academy of Global Health Research Program. We traveled to Kigali, Rwanda to meet with my partners and then to Kampala, Uganda where Sarah Benett (M1) and Brittany Fickau (M1) participated in a research project with my colleagues at the Child and Family Youth Foundation. They learned many important and expected research skills, from how to design an international study, to working with clinicians, to administering the Malawi Developmental Assessment Tool (MDAT) in young children, to analyzing data, and to preparing a manuscript. 

I learned about the pressure that medical students impose upon themselves—their perception of needing to work twelve-hour days to being highly productive—and it was difficult for them to slow down and engage at African speed. An important unexpected skill that they developed was to pause and observe the culture.  In this crowded city in a low- to middle-income country (LMIC), being “punctual” takes on a new meaning. Someone can plan to be early for a meeting or clinic but if there is a bad traffic jam, they may sit for hours in traffic. The meeting may happen three hours later or not at all.  

At first, there was stress because of their internal pressure to be productive and, yet, they were dependent on a system and culture that they could not control. They learned to work with women and children in a clinic that served residents of informal settlements.  They did not speak the same language.  They were dependent on clinic staff and interpreters.  They learned to form meaningful relationships and to network.  There were reflections on how to be efficient with very limited resources and the importance of listening…even when you don’t speak the same language. One of the most import skills we all cultivated was flexibility. When things don’t go according to plan- pivot and be resilient. 

All these experiences became even more important in 2020 when the pandemic hit.  The next two M1 mentees, Lauren Tostrud and Hannah Racicot, were planning to do their summer research program in Rwanda. We did the best we could to zoom there frequently, and they worked diligently with our partners on important literature reviews about the effects of the Hutu genocide against the Tutsis. We stayed in our homes and watched movies about sub-Saharan Africa and the culture and discussed them.  Throughout the pandemic, they never complained, they remained excited about their work, and I learned about the ways they implemented the skills they acquired into their medical school training. 

I am honored to serve as a mentor to these bright and dedicated students and this role does not end after a semester or graduation. Together we learn, we support each other, and we thrive. 

Laura D. Cassidy, MS, PhD, is the Associate Dean of Global Health, Professor and Director of the Epidemiology & Social Sciences Division, and Founding Director of the Master of Science Program in Global Health Equity at MCW. 

Gratitude – Who’s Got Time for Gratitude?

November 18, 2022 Thanksgiving Issue

Editor’s Corner 

Gratitude – Who’s Got Time for Gratitude?  

(AND A RECIPE FOR DATE-FILLED SUGAR COOKIES!)  

By Jeff Fritz, PhD 

As we all head into this season of Thanksgiving, Dr. Fritz celebrates the wonderful benefits of being grateful and offers some ideas for developing habits of gratitude ... 

I hate to admit that I suffer from a strong case of what can be termed as negativity bias. Put simply, I tend to overly focus on the negative and use remembering negative information as a protective habit to avoid pain in the future. It’s a cognitive bias and amplifies the power of losses compared to the power of pleasure obtained from gains. Maybe it is why some coaches over time will state that the losses hurt more than the wins, even when the wins are many and the losses few.  

My negativity bias tends to shine when I’m overly busy and plays out in my impatience with interruptions. Yet as an educator, life is all about stepping into and welcoming many interruptions as an opportunity to teach and learn. Someone stating, "I have a question,” can be viewed as either an interruption or an opportunity to engage. 

Thankfully, one of my mentors suggested I try to flip this recording in my brain by focusing on gratitude and developing practices of gratitude. My mentor started the conversation by challenging me with, “What have you got to lose?” 

Looking back on it, that was a smart move! It forced me to use my negativity bias against myself and challenged me to practice gratitude.  

I encourage you to explore the research on the under-appreciated power of gratitude to transform our lives and our health. I explore three habits that could be practiced to develop gratitude:  

• A gratitude journal 
• Three gratitudes daily 
• Random acts of kindness 

A gratitude journal was not a huge success for me, but the practice of sharing with someone three things I was grateful for on a daily basis worked well around the house. Personally, I found random acts of kindness a big help. Little things like holding a door for someone, serving in the moment to fill an easy need, or just saying thanks became a way to add a boost throughout my day.  

Over time, I have begun to view interruptions in a more favorable light. While this may sound strange, I sort of look forward to interruptions as ways to explore new opportunities or deepen friendships. I was reminded by a dear friend to never let a good crisis go to waste. What an amazing way to transform a major interruption into an opportunity to practice gratitude and service! 

Another reminder that recently came my way was that gratitude is a way we can show we care for others. 

My three gratitudes for today:  

• Fire Alarms 
• The trust of the students I’ve been given the opportunity to serve as an instructor 
• The staff support team at MCW-CW – they have repeatedly made me look so much better than I am, and I thank them for their initiative and energy to help us create team wins. 

Grandma’s Date-Filled Sugar Cookies  

Soft and Chewy Date-Filled Sugar Cookies - Oh My! Sugar High  

I was also asked to share a favorite holiday recipe. Another difficult ask as I’m more frequently the recipient of the recipe than the person following the recipe to produce something amazing. I should have mentioned that I’m really grateful for all those amazing people daily transforming ingredients into outstanding meals. Regardless, one of the holiday favorites that took a while to grow on me but I now look forward to each year around this time is Date Filled Sugar Cookies.  It was my grandmother’s signature dessert that she only made during this season. While she refused to share her exact recipe this one comes close:  

For further reading: 

Vaish A, Grossmann T, Woodward A, Not all emotions are created equal: The negativity bias in social-emotional development, Psychol Bull 2008; 134:383-403. https://psycnet.apa.org/doiLanding?doi=10.1037%2F0033-2909.134.3.383  

Hamlin JK, Baron AS, Agency Attribution in Infancy: Evidence for a Negativity Bias, PLoS One 2014; 9(5):e96112  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4011708/    

 

Jeff Fritz, PhD, is an Associate Professor in the Department of Cell Biology, Neurobiology and Anatomy and the Department of Regional Campuses, Central Wisconsin Campus. He serves as the Director of the Kern Scholars Program and is a member of the Student Pillar, Curriculum Pillar, Faculty Pillar and the Philosophies of Medical Education Transformation Lab of the Robert D. and Patricia E. Kern Institute for the Transformation of Medical Education.