I thought about Nobukazu Kuriki today. His story seemed a fitting meditation for members of the rare disease community as we finish one year and prepare to start the next.

A brief profile of Kuriki appeared in The New York Times today in The Lives They Lived 2018, an end of year tribute to artists, innovators, and thinkers who died during the past year. Kuriki’s greatest triumph, as described by The Times, was his failure to reach the summit of Everest “again and again.”

There’s something in Kuriki’s story that speaks to me as someone who spends a good part of his time writing about the pursuit of lofty goals and the invariable failure that goes with that. Drug development is a process often defined by failure. Rare disease drug development has the added dimension of often being for patients whose lifespans too often are shorter than the time it would take to discover, develop, and win approval for a new treatment.

I have always found failure more interesting than success. As a kid growing up in New York, I rooted for the Mets, not the Yankees. I can admire talent, appreciate flawless execution, and even skills that seem to stretch the limits of human abilities, but that can grow tiresome. It lacks imagination, errs on the side of what is safe, and makes failure intolerable.

Kuriki had been an aimless youth who found purpose in mountain climbing. He stood at the tops of the tallest peaks in every continent except Asia. “He made an art of hardship, transforming the heroically difficult into the near impossible,” Daniel Fromsom wrote in the Times.

The paper suggest he probably could have succeeded reaching the top of Everest if not for his unusual approach. He rejected the standard routes climbers use to reach the top of Everest and instead focused on alternatives that accounted for just 3 percent of successful ascents and about 28 percent of deaths on the mountain. If that wasn’t risky enough, he preferred to climb without oxygen, alone or with limited support, and during the fall, when crowds were gone but the weather is unpredictable.

“People feared failure too much, he said, and as a result they discouraged one another from pursuing their dreams. Kuriki dreamed of a world in which people supported one another as much as possible,” wrote Fromson. “Filming and streaming and posting and tweeting, he shared the same lesson, over and over: Risks could be accepted because failure could be accepted.”

Kuriki’ first attempt to scale Everest came in 2009. He would try seven more times. On his fourth attempt, frostbite led to the amputation of nine fingers at the middle joint. Weather stopped him again and again.

On his final climb on May 21, he felt ill and told his team he was descending. They lost contact with him and his body was discovered later that day. He had fallen more than 100 meters.

Embracing failure and striving for failure are two separate things. You may think Kuriki foolish, reckless, or crazy. I don’t believe failure should be a goal and I don’t think it was for Kuriki. What I do love and respect is the fearless pursuit of a goal against all odds.

As we think about the new year, let Kuriki’s lesson be a mantra: Risks can be accepted because failure can be accepted. Have a happy, healthy, and fearless 2019.

 

December 28, 2018
Photo: Nobukazu Kuriki