I am Teri Dillion

living with ALS

Colorado


Yet even though I haven’t found a miraculous physical recovery, this illness--along with the support of my husband, family, and community--has taught me how to be strong and persevere, and challenged me to cultivate gratitude in simple joys I once took for granted.

At 35 and newly married, enjoying my flourishing career as a psychotherapist and comforting path as a Buddhist practitioner, I thought I had arrived at the satisfied life I’d long wished for. But once diagnosed with ALS and told to get my affairs in order before facing total paralysis, I found myself pertly booted off all lofty perches of personal achievement and easy equanimity. In the months that follow, with my husband by my side, I set out in dizzying pursuit of an unlikely cure, traveling deeper into the byzantine landscapes of modern medicine and questionable promises of alternative healing. Grounded by skepticism as my disability grew, I attempted to court an elusive faith in a miraculous recovery while knocking ever-louder at the door of my own knowing. I won’t lie; my journey with ALS has been harrowing. I never imagined becoming trapped in my own body in this way, and especially with a condition that Western medicine seems to have scant interest in actively battling. Yet even though I haven’t found a miraculous physical recovery, this illness–along with the support of my husband, family, and community–has taught me how to be strong and persevere, and challenged me to cultivate gratitude in simple joys I once took for granted. What’s more, having to retire at 36 allowed me time to reunite with my love for writing, a practice I had largely given up once I finished graduate school. In 2019 I began writing a memoir on finding resilience. Since I was largely paralyzed when I began, I ended up writing 90% of it with my eyes with the help of my eyegaze computer. It feels like a huge accomplishment to have completed the project within two years, and as of November 2020, No Pressure, No Diamonds: Mining for Gifts in Illness and Loss is published and widely available. https://www.teridillion.com/book.html

In the story I tell, I reclaim the mysteries of grace while gently reminding readers of the fragile blessings of embodiment. I explore whether the most brilliant jewels of healing and meaning can be found not in conventional narratives of triumphant recovery, but in what we painstakingly and lovingly carve for ourselves out of life’s roughest blows. It’s been such a delight to already have people throughout the US and beyond, with ALS or never having heard of ALS, track me down to tell me how much the book has helped them.

Another unexpected joy of this incredible challenge I’ve been entrusted with. I’d like nothing more than to raise public awareness of ALS. This wicked illness has remained underaddressed and underfunded for too long. For the sake of everyone who’s already been devastated by it, and everyone who could someday be touched by it–which is, frankly, anyone–we can’t move fast enough in finding answers. I’m so heartened by the good work of I Am ALS and similar initiatives working to ensure the eventual restoration of health and independence so many of us long for.


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