Describe your ideal reading experience (when, where, what, how).
I have always loved to read, and I read nearly anywhere. Journalists used to get a kick out of the fact that in the midst of the chaotic joy of the [New Orleans] Saints locker room, I would lie on the floor reading books.
These days, while I’m not so good at flipping pages, I still tear through books. I listen on Audible, or read on Kindle, and for the books I’d like to pass on, I buy the book for the shelves in our house.
The ideal reading experience? For me, there is nothing more glorious than sitting outside under the shade of an oak tree with my wife, Michel, or our 12-year-old son, Rivers, listening on Audible or hearing them read the hard copy. (Rivers and I just finished the young readers adaptation of “The Boys in the Boat,” by Daniel James Brown.) Our 5-year-old daughter, Gray, is just learning to read, so I look forward to continuing this tradition in nature, my sanctuary, for many years.
What book do you turn to during hard times?
Viktor Frankl’s “Man’s Search for Meaning.” There were a couple years, as I was losing the ability to move, talk and breathe, that I felt so lonely, ashamed and weary that I was ready to give up and die. His words helped me choose life.
What did it take to write a nearly 300-page book?
In a word … everything. I type with my eyes, letter by letter, so to write this, it took a physical toll to write for several hours each day for two years. It took patience and discipline. People often talk about “writer’s block,” but I think I experienced something of the opposite thousands of times over the past couple years. Ordinary writers may have a wonderful idea to get on the page, then they quickly write it down. But I type so slowly that the wonderful idea that was so vivid and clear eventually slipped into the fog as I trudged and typed.
It also took an emotional toll. To relive the most lacerating and vulnerable times of my life, then to share those experiences in a raw, truthful human way, rather than a heroic way, took an extraordinary amount of trust. It’s clear to me that sharing our shortcomings and weaknesses with each other is our greatest strength. Our salvation.
Why do you describe yourself as afraid to finish it?
There were multiple reasons. Unlike most authors, I’m not able to quickly scroll through a chapter to revise or edit. I have bragged on social media, “I get more done in one day than most people get done in 15 minutes!” So, during the end of the writing process, there was fear that I would lose the input I needed to tell our story fully and truthfully.
Michel and I took some enormous risks in openly and transparently sharing our journey as a couple enduring the dark traumas of life with A.L.S. When you read the searing experience that we have been through, you may feel kind of like you’re overhearing conversations that you shouldn’t be hearing. But these difficult, truthful and compassionate conversations were our redemption, and our healing. I also took some personal risks in sharing my fairly unconventional views on religion and spirituality.
I think the most frightening aspect may be that once published, my life story would become solid, static and fixed. That is so crazy to me, because, as a lifelong explorer, my perspectives, philosophical outlooks, and beliefs are dynamic and fluid.
Galleys for your book opened with a quote from Shakespeare, “Tears water our growth.” How did you come across it? Why that quote?
I know this will come as a shock, but not everything I read on the internet is true! While this quote was attributed to Shakespeare, we did a little digging and there is no record of him ever saying or writing this, even though it’s constantly attributed to him. Although, in “As You Like It,” he does write: “Sweet are the uses of adversity. …” [The quote is now attributed to Author Unknown.]
What kind of reader were you as a child? Do any childhood books and authors stick with you?
My mom was a language arts teacher, so she would read to me nearly every night and I was a voracious reader growing up. The book that stands out from my youth is “Ender’s Game,” a novel by Orson Scott Card. In sixth grade I found this book in the Bookmobile, a big yellow van that I remember with great nostalgia. I can’t say exactly why, but I also read it a couple years after I was diagnosed with A.L.S.
I sense that in both my adolescence and the crazy unknowns of life where I was losing the ability to move, talk and breathe, I resonated with two themes in “Ender’s Game” — feeling isolation, and working to discover my own identity.
I’m reminded of a profound truth in a quote from Ender: “In the moment when I truly understand my enemy, understand him well enough to defeat him, then in that very moment I also love him.” In embracing this paradox, I find strength and compassion in the midst of adversity.
What book has had the greatest impact on you?
Wow, this is an impossible question to answer, but I enjoy dancing with the impossible. It would be “21 Lessons for the 21st Century,” by Yuval Noah Harari. I read this in early 2019, my ninth season with A.L.S. In “21 Lessons,” Harari explores the profound challenges facing humanity, including technological disruption, political polarization and existential risks. With such rapid change, life will become ever more chaotic.
Harari mentions multiple times that the realest thing in the world is suffering. He goes on to say that suffering is a product of patterns in our own minds, and offers a tool that has helped him alleviate suffering and be more resilient — meditation. I now train my mind in meditation for two to three hours a day. I didn’t realize it then, but as I started meditation, I was embarking on a practice of a lifetime.
What’s the last great book you read?
When I was diagnosed, one of the first questions I asked in a journal entry was, “Can I discover peace of mind, even if this disease destroys my body?” That inquiry has been a guiding light for me the past 13 years. “The Good Life: Lessons From the World’s Longest Scientific Study of Happiness,” by Robert Waldinger and Marc Schulz, has real-life stories I could relate to, providing insights which have helped illuminate the path for me to live longer, and be grateful and content.
The last book that made you cry?
“I Wish for You,” by David Wax and illustrated by Brett Blumenthal. During spring break, as our daughter nestled beside me in bed, our caregiver, Jenni, read from the book. It lists about a dozen of the most important character traits and values that I aspire to embody and instill in our kids. Witnessing Gray following along with her tiny finger, I was overwhelmed by the miraculousness of the moment. Despite being 10 years past my expiration date, here I was, sharing a cherished reading experience.
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