Steve Gleason is a former NFL safety and special-teams player who now devotes his (non-family) time to making life easier and fun for others living with ALS. This essay was adapted from his new memoir, A Life Impossible, out now.
I'VE NEVER HUGGED my kids. Ever.
I learned that my wife, Michel, was pregnant a few weeks after I was diagnosed with ALS on January 5, 2011, and ever since, the condition has prevented me from enjoying some of the things that ordinary people might take for granted. Like, say, hugging.
But our children, Gray and Rivers, motivate me to continue. Being an active and involved parent has been the most important commitment in my life, but in addition to providing enormous joy and inspiration, it can be a deep source of pain. One of my mantras is Be passionately committed and completely unattached.
Whenever I try to interact with my wife or our children, it can take so long to communicate that the moment passes before they are engaged. I type with my eyes, letter by letter, using eye tracker technology because I can no longer move, talk, or breathe on my own. Multiple times a day, I’ll be typing something to say to one of them, but they’re out of the room by the time I’m finished. I still say what I typed up, just to release it.
The effort it takes for me to connect with my people can be difficult and exhausting—unimaginably fucking exhausting. And so often the effort is unsuccessful, or because there’s no inflection in my synthetic voice, it completely backfires. Accepting these moments and leaving them behind can feel impossible. But it’s no one’s fault.
At times there can be a sense of fear that I am not a good enough dad, that I am somehow unworthy. The wanting and attachment to do something—to prove my value—has been a theme in my life, even before ALS.
Social scientist Arthur Brooks, Ph.D., calls this the “striver’s curse.” It’s almost universal that people think they have to accomplish more and more to gain the approval of others in order to be happy and feel valued. This is a futile approach.
Yet rather than escape, I’m learning to explore acceptance. As Siddhartha Gautama—the Buddha—said, “Whatever has the nature of arising has the nature of ceasing.” And I know this. I’ve learned that emotions such as the feeling of uselessness are transitory.
Therefore I can accept them, without attachment to how I think life should be. This wisdom is simple to understand, but it ain’t easy to live. It’s the practice of a lifetime.
A version of this article originally appeared in the May/June 2024 issue of Men's Health.
