‘It’s about love’: Battling a brain tumor, a man finds resilience through storytelling

It was mid-October in St. Joseph, Mo., and Michael Bischoff, 46 and rail thin with dark wispy hair and a faintly visible scar behind his right ear, stood before nursing home residents and their family members, to tell a story of generations.

The community room smelled like hamburgers and potatoes. At Bischoff’s side sat his father, Donald, 75, head down and silent as usual, in a wheelchair, a decades-old scar arcing his scalp.

Their brain tumors had struck 70 years apart. Donald’s was successfully treated when he was a toddler, but he developed a brain condition that ultimately left him depressed and physically debilitated; his wife and three children did their best to help carry that.

Michael’s cancer is a glioblastoma, which he has treated with surgery, chemotherapy, radiation, experimental vaccine therapy, and electronic stimulation caps that look like they were torn from the pages of a sci-fi novel. Diagnosed in September 2015, he has already lived longer than most with the disease.

A year ago doctors told him they’d exhausted treatment options, but Bischoff maintains his own regimen: frequent time on the couch with his wife, Jennifer Larson, and their two children. Daily walks through the Mississippi River Gorge near his home in Minneapolis. Perhaps most unconventionally, public storytelling.

Which brought him to the room in St. Joseph, and his hardest gig.

Bischoff does not come easily to public speaking. He was intensely shy as a child and as a young man, and only slightly less so as an adult. Now he was in a room filled with people who struggle to hear well.

He put his hand on his father’s shoulder and told his story of a 100-year family history — most notably, he told the story of his father’s resilience after the trauma, and how his dad never got to fully enjoy the benefits of life after that, but how his children and extended family have been given their own opportunities.

“I get to continue receiving gifts of resilience and miracles,” he said.

And he thanked his father for that.

“I don’t know how much my dad took it in,” Bischoff said afterward. “But just that he was there with me meant a lot.”

In telling his story, as he has in multiple settings now, Bischoff has been watched and coached by researchers who are studying an unusual medical question — namely, can the act of storytelling improve a person’s health?

One of those researchers believes the answer is yes. Jonathan Adler, a psychology professor at Olin College of Engineering, associate editor of the Journal of Personality and chief academic officer of the Health Story Collaborative, calls the dynamic “living into the story.”

Patients’ mental health, he said, can measurably improve when they tell their own story in such a way that it recognizes their resilience, even when — or perhaps especially when — they may not have previously believed themselves to be resilient. Narratives that emphasize nurturing community connections also help, he said.

The intimacy of sharing one’s story in person can build such connections. Bischoff knows this from experience.

“When I found out about my diagnosis, I thought, ‘I don’t want to do this in isolation only,’” he said. “I know what that’s like from experience as a child, and I want to be intentionally reaching out and trying to connect from the beginning. But I know it’s hard for me, and for many people.”

Not long after his diagnosis, a friend organized an event where Bischoff decided to tell his story for the first time. While preparing, he realized he didn’t want to focus his days exclusively on ridding himself of his cancer.

“It got much clearer to me that how long I live — the number of days — is not what’s most important to me. What’s more important is how fully I’m loving my family and friends, and how true I’m being to my purpose, and how much I’m receiving the love of my friends and family.

“Having people gather and listen in a loving way to my story helped me understand that. It’s about purpose; it’s about love. And I need to keep doing that over and over again to reorient myself away from the anxious grasping, and toward the love and purpose.”

Sometimes that has meant telling his story to a room full of doctors, or alongside his own doctor. (That’s one approach being studied by Adler’s Health Story Collaborative.) Other times it means telling his story to someone who is learning how to do the same.

Other times, it’s telling his story to his dad.

The morning after the event, father and son were together again at the nursing home, and this time Michael sat close to his dad.

He told him how, last year, when his chemotherapy had diminished his white blood cell count, Michael told his children that it was painful to have to repeatedly nag them about washing their hands, given the risk of infections. Soon after, he overheard his son explaining to his daughter how to be more compassionate toward their dad.

Later that day, Bischoff was in bed recalling what he’d heard, and he grew so overwhelmed with love for his son that he wept. His son happened to walk by and asked why he was crying.

“I said, ‘I’m crying about how much I love you.’ And instead of running away, like I’d guess a teenage boy would do, he came up to me in my bed and grabbed my hands and squeezed them tight, and of course then I cried more. And as I tried to eventually let him let go of my hands and let him be free of this dad having a meltdown, he just squeezed them tighter. And pulled closer. And it just melted me and was a highlight of my life.

“To know and feel so directly my son’s love for me was the highlight of my life.”

When Bischoff told his dad that story, he said, he reached over and took his father’s hands in his, and squeezed them.

“I want that for you,” he told him. “I want you to know and feel how much your son loves you.”

His father didn’t say anything, Bischoff said. But he didn’t pull away. He looked in his son’s eyes. And he nodded.