Interview: Steve Gleason, the author of the A.L.S. memoir ‘A Life Impossible’

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.