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Lived-Experience Perspectives on Building Resilience

Huda Akil reflected on an earlier conversation with Indida Birto, who was a researcher at Emory University Rollins School of Public Health and a service plan coordinator at Here’s to Life, Inc. at the time of the workshop. Birto shared with Akil her personal concept of resilience through the Japanese art of Kintsugi—where imperfections are embraced and transformed into strength (see Figure 2-1). “That is another way of looking at resilience,” said Akil, emphasizing how lived experience can provide a different lens through which to examine resilience. This chapter explores the journeys of individuals who have built resilience through their lived experiences, enriched by a cultivated social support system and advancements in science.

A SPARK IN THE DARKNESS: ELECTRICITY AS MEDICINE

The journey of Jon Nelson—member of the board of directors of the American Brain Coalition, a lived-experience council of One Mind, a director of lived experience for Motif Neurotech, and Chief Pulverize Officer at Pulverize the Stigma—is a testament to the complexities of living with treatment‐resistant major depressive disorder and the resilience that can emerge from the darkest moments. A self-described “serious mental illness livedexperience activist,” Nelson has dedicated his life not only to overcoming his own struggles but also to voicing the challenges faced by countless individuals battling the relentless grip of depression.

In 2012 Nelson was diagnosed with major depressive disorder, a condition that swiftly escalated into a relentless treatment-resistant battle lasting nearly a decade. During those years, his only constant was a deep, pervasive desire to die—a sentiment he described with stark candor. Despite trying every available medical intervention, he found himself descending into what he plainly calls “hell.” It was this despair that eventually drove him to participate in a clinical trial at Mount Sinai Hospital under the care of Helen Mayberg. The procedure required an intense, eight-hour neurosurgical intervention to install a device that delivers 22.5 million electrical pulses per day to his brain.

Almost immediately after the surgery, Nelson experienced what he calls a “bonus life.” The profound change was “unmistakable,” he noted: The constant suicidal ideation evaporated, and he found himself liberated from the disease that had long warped his perception of life. “Electricity is my medicine,” he later reflected, underscoring the transformative impact of deep brain stimulation. Yet this newfound relief was coupled with an unforeseen challenge—the reawakening of genuine emotion. In the early days following his recovery, he relished small moments of normalcy—walking his dog, enjoying lunch with friends—but about six weeks postsurgery, the resurgence of familiar feelings of sadness, stress, and even anger forced him to confront a new reality. “I have

up every single day,” he asserted—a motto that frames his ongoing struggle. His resilience is expressed not only through his personal transformation but also in his commitment to forming peer support networks and pushing for change. Even as he battles uncertainties about medication adjustments and the possibility of relapse, his unwavering determination to transform anger into actionable advocacy stands as a powerful beacon for others.

His account is not solely about the marvels of biomedical intervention or the triumph of modern neurosurgery. It is, at its core, a candid exploration of the human spirit—a call to recognize that even in the face of overwhelming darkness, the act of simply rising each morning constitutes an extraordinary form of resilience.

MENDING LIFE’S FRACTURES WITH GOLDEN STRENGTH

Indida Birto shared her personal journey with resilience—a path defined not by innate strength but by the ongoing work of overcoming adversity. Drawing on her extensive background in recovery, HIV care, case management, and research, Birto’s narrative weaves together a story of hardship and emerging purpose. Birto focused on the metaphor of Kintsugi (mentioned previously by Akil), explaining that when someone navigates life’s challenges and mends the metaphorical cracks with gold, they become even more valuable (see Figure 2-1).

Birto’s story begins with a candid reflection on her early years—a time marked by intergenerational family struggles. Growing up in an immigrant family burdened by substance use disorder and behavioral health challenges, she recalled a childhood shadowed by insurmountable difficulties and trapped by circumstances beyond her control. In an environment where understanding and support were limited, her early life set the stage for a gradual yet profound transformation.

A turning point in her narrative was the gradual reframing of adversity. Birto vividly recalled a period when every setback seemed difficult to overcome, yet over time, she began to reimagine her hardships as a service to others. In a resonant moment, she stated, “each of us is a testament to the miracle of resilience. You are a miracle.” This declaration underscored a pivotal shift: understanding that the very experiences that once seemed to define her limitations were, in fact, the building blocks of a renewed self. By viewing each challenge as an opportunity for growth, Birto illustrated how the process of resilience involves continual adaptation and learning from each stumble along the way.

Central to her message is the importance of community and self-compassion. Throughout her journey, Birto embraced support systems ranging from crisis counselors to peer networks, emphasizing that even the smallest gestures