Portraits of Resilience: How Patients and Caregivers Cope through the COVID Pandemic

By Richard Tsai

The word “storytelling” invokes a pleasant image of listeners around a campfire, listeners from any era and any culture. It could, however, just as accurately evoke an image of brain chemistry that creates direct experience and even changes behavior: I originally discussed this concept in an earlier post, “Why Storytelling Builds Brands.”¹ Research shows that people remember stories better than mere facts and that the brain can store more information and retrieve it more easily when it is in story form.² Storytelling is scientifically important because stories convey both information and stimulus.

What is needed now are stories of resilience in the face of challenges during the COVID pandemic, because such stories literally help us keep going. Inspire and Health Story Collaborative will host a live virtual story session, Portraits of Resilience, on Feb. 11 to celebrate — and invoke — resilience in the face of illness.

This free event will feature two patient advocate storytellers, Estela Lugo and Christopher Anselmo, and explore images on the theme of resilience submitted to Inspire’s “Inspired by You” photo contest (be sure to watch through some of the “portraits” in the video below from the contest). Both Lugo and Anselmo’s lives changed when they started sharing their patient journeys.

“The stories that Estela and Chris are telling will certainly resonate with patients and caregivers,” said John Novack, Inspire’s head of patient engagement, “but moreover, these are insights important for stakeholders across healthcare to hear.”

About the speakers

Chris Anselmo is the author of the blog, Sidewalks and Stairwells, where he writes about his experience living with an adult-onset muscle disease. As he describes in a video on the Sidewalks and Stairwells website, his feelings about his abilities changed when he began writing a blog for the MDA.

In [writing publicly], I got to meet other patients [and read] other people’s stories… It helped to open doors for me. I got to attend the MDA clinical conference in 2014 where I met a couple of researchers who connected me with other researchers — and the next thing I know, I’m involved in fundraisers and speaking engagements.

He says that revealing his truth enabled him to ask directly for help, which led to new freedoms, and ultimately, to his taking on an MBA. He is now a Market Intelligence Manager at the Muscular Dystrophy Association. He says,

For better or worse, I’ve accumulated a lot of wisdom for someone my age, mainly because I have been forced to see the world from a different perspective. It is through interactions with others that my life has meaning, and I find strength in battling this debilitating disease.

Estela Lugo was a “restless” product designer and a new mother when she came across a trailer for a documentary about a woman with her disease, Charcot-Marie-Tooth, a hereditary progressive neuropathic condition. As Lugo says in her 2019 TEDx talk, “RePurpose Your Pain”, seeing the documentary “changed my inner whisper from ‘is that all there is?’ to ‘YES! I want to be brave like that.’” After volunteering for eight years, she joined the Hereditary Neuropathy Foundation full-time in 2018 and now works as its Program Development Manager. (The Hereditary Neuropathy Foundation sponsors the Charcot-Marie-Tooth support group and discussion community on Inspire.) Describing how vital storytelling is to resilience and recovery, Lugo said:

One person can choose to be brave and truly show themselves to the world — no script, no filter, just their raw pain and warrior spirit. And when they do, they become a lighthouse for others to find their way out of the dark.

Featuring portraits of resilience from the Inspire 2020 photo contest

Thousands of people from around the world participated in the contest last year, and many of whom were patients and caregivers with cancer, rare, and other chronic diseases. Each photo submitted was also accompanied by a short description to describe the photo. One of my favorite photo portraits is a caregiver alongside a child with Wilson disease, a rare, inherited disorder characterized by accumulation of copper the liver, brain and other vital organs. Without treatment, it is debilitating and fatal. (Inspire with the Wilson’s Disease Association has a large and vital support community for patients with Wilson Disease and caregivers.)

Both speakers and the photos make clear that the path out of their own darkness was neither simple nor direct; the important message is that connecting with others sparked their resilience. Storytelling changes minds, behaviors, and lives. Please join us on February 11.