Note from host/producer David Freudberg:

This episode of Humankind presented some unusual production challenges and, ultimately, proved to be one of the most moving programs I’ve ever worked on!

The prime subject is Tucker Stilley, a remarkable spirit who, in his early forties, was diagnosed with ALS (known as Lou Gehrig’s disease), a degenerative condition that leads to paralysis and frequently claims the patient’s life. In the case of Tucker, a super-creative media producer and music composer, at the time of this recording he was no longer able to walk, eat or speak. But he could send amazing email notes, so we conducted our interview in a series of Q and As in written text, then used a narrator to bring his words to life. By that point Tucker could not use his limbs, but he had mastered his computer and could compose text (and actually edit videos and make music) all through a technique using his eyes! It was all the more heroic and fascinating. You’ll hear all that in the program. And we have the voices of a large community of loved ones who rallied to help and support Tucker. The family members you hear include his wife (film editor Lindsay Mofford), who reached a level of emotional honesty I have rarely encountered in my years of recording interviews. In the words of Tucker: “It’s a challenge, but you mustn’t despair. I love you all—see you next time!” On August 18, 2021, we lost Tucker Stilley at age 58.

Perhaps I’m not interested in despair. I have had previous experience with despair—it’s a bore. Maybe I want a universe where I am brave. I’m not facing anything that all of you won’t eventually face and that everyone hasn’t always faced. That might seem like cold comfort, but when I consider all those that went before, I see how I can go on, how I can do it. I’ll tell you one thing, you can’t fight despair—you have to let it pass through you. Plus one of my super-powers is denial.”

—Tucker Stilley, Video editor, music composer, artist, person with life-threatening diagnosis of ALS

I’m the kind of person who’s working on a job, but thinking about where we’re going to go on vacation. And this immediately put a halt to that. When you’re sitting there, and a doctor tells you that your husband has three to five years to live, it’s like, I realized that the only way to survive through that shock is to—to stop, and to look around, and say, “Well, we have today.” And, in a strange way, after so much time together, it’s really—it’s really—you could almost say it’s become more beautiful.”

—Lindsay Mofford, film editor, wife of Tucker Stilley