Better than the lottery

When I was 15 my brother died of a cancer no one had seen before. He was 21 and a midshipman at the US Naval Academy. He was at the peak of health until an unknown cancer exploded inside his body. His doctors at the National Navel Medical Center sent his slides around the world, searching for answers. No one could fix it. No one even really knew what it was. He died in only three weeks. It was May 13th, 1979—Mother’s Day

This past April, thirty-six years later, I met a young man who unintentionally shook my heart and opened again the mystery of my brother’s death. Our brief encounter has made me think about the profound intersections of our lives and the gifts that can emerge even in tragedy.

I became an actor, then a teacher and now my life has turned an unexpected corner. I work with researchers and doctors on effective ways to speak to the public at the Alan Alda Center for Communicating Science. I was introduced to John Schell, an MD/PhD from the University of Utah, who was one of the winners of the iBiology Young Scientist Seminar, a video contest that features the research of emerging scientists. Winners were chosen based on their research innovations, but their communication for a web broadcast needed attention. John and the other winners were flown to work on their talks with us before being filmed in a professional TV studio and posted to the iBiology website.

In our training we begin with improvisation, which is not about humor or entertainment – but about heightening awareness, improving listening, finding a deeper connection with the material and with the audience. Improv is often the most feared, but ultimately the most profound part of our program. After Improv, we Distill the Message: minimizing jargon, speaking vividly and conversationally and answering the “so what” question. Why do we care?

In our work together John began with a pretty dry lecture about a discovery he had made about a mechanism inside a human cell. I knew he had hit upon something significant with this discovery; he wouldn’t have won the contest otherwise. However as a theater person, I had no idea what he was talking about. He began with distance and jargon, describing the “transporter for the pyruvate in the cell.” Oy. Very confusing!  I asked, “Why does this matter so much? Who was the cell attached to?”

Eventually he acknowedged that the cell was attached to a patient. Good, we’re getting somewhere. I persisted, “Who was the patient? Why do you care?” After a few hours, the world broke open and John dove in and told me the story of “the little girl.” She died before the age of two from a mysterious disease. John had never met her; he didn’t know her name or what had become of her family. But the little girl’s preserved cells helped him and his colleagues break open a mystery that has had cell biologists arguing for 40 years: the precise identity of a molecule that our cells need to get energy from the food we eat.

John described the evening he cracked it. Everyone had gone home. He was alone, poring over the data that had just come back from the lab when he suddenly spotted it – a mutation in a gene that he and his colleagues had suspected was the culprit. This was a critical piece of the evidence – the molecule, as John describes it, “that puts gas in the engine” of our cells. It was too late for the little girl – she had died a decade before – but unlocking the key to this cellular puzzle was a profound moment in John’s life. It could, finally, explain the little girl’s death; maybe in time to save others with the same rare condition.

“For me as an MD/PhD, “ he said, ”identifying this human disease was the single most salient thing I’ve ever done in my life... If someone offered me the chance to win the lottery or do this experiment, I’d rather do this experiment.”

When he finished telling the story, I delved deeper. “Did you contact the family? Did you let them know? This news could radically change the path of their grief.” He was concerned about sharing the story. Was it too personal? Did he have the right to even talk about the little girl, a child he had known only on the cellular level?

And so I told him my story. Surely since 1979 some researchers have spent time poring over my brother’s slides. Maybe there is a “John” in the world who has uncovered the answer to his disease. Maybe his cells have changed someone else’s life – a researcher, a doctor – maybe another 15-year-old’s big brother. So my urgency for John to find the little girl’s family was powerfully rooted in my own history.

My answer to John was “No. It’s not too personal. You do have the right. Make it your business to tell this story.” John left us saying he wished he could redo every talk he’d ever given. Bringing his own humanity back into the message had both improved the talk and reminded him of the way he felt about his work.

What I have learned after five years of teaching and coaching hundreds of scientists is that they all have deep, personal forces driving them but the necessity to distance themselves from their research is profound. Emotional connection shouldn’t influence data, after all – so scientists must tuck away what they want to happen and focus instead on what is happening. That critical distance is imperative to successful research and of benefit to us all.

But when it comes to communication, scientists need to close that gap and reduce the distance. The public needs to hear the human story, the passion that has kept them working long hours, often alone in the lab, when no one is around to notice. We need to hear of the little girls and the midshipmen whose cells haunt them. They are too close to recognize the “so what” in their own work. They know why they are doing it, but the rest of us don’t.

Shrouding science communication in distance and jargon is like throwing in the towel on public engagement. The public desperately needs to understand; our future depends on it. Bringing the story back into the message of science can help build a bridge and balance the scales of the opposition. There is too much to lose without it.

And if there is another “John” out there, a “John” whose life has been changed by my brother’s cells, I would love to know. Stephen C. Lantz was my hero Finding out the cause of his disease would for me be far better than winning the lottery.

To see an example of the effects of the coaching done at the Alan Alda Center, take a look at the before/after video below. The “before” segment was done via skype, with poor video quality. The “after” segment was produced in a TV studio with professional equipment. There are obvious differences in video quality, but our focus is in how the communication has changed. The Alda Center doesn’t offer tips, but works with scientists to think about ways of transforming their skills and their perspective. Here is one example, where John shifts his lecture about his research into a much more conversational mode that includes story and his own excitement.   

Using Story from Alan Alda Center on Vimeo.

Valeri Lantz-Gefroh is the Improvisation Program Director at the Alan Alda Center for Communicating Science, at the Stony Brook University School of Journalism