by Ady Barkan
To resolve this tension, I often return to Reinhold Niebuhr’s Serenity Prayer, which asks for the serenity to accept what I cannot change, the courage to change what I can, and the wisdom to know the difference. I am no longer ruffled by quotidian nonsense, or even by the onset of new symptoms, which have arrived nearly every week this year. I have come to accept that my ALS is progressing faster than average, that my body is wasting away quickly, and that what I have today will soon be gone.
This year has borne witness to the potency of hopeful organizing. Indeed, every year since I started paying attention, I have witnessed the joy and strength and liberation and change that emerges from acts of collective struggle. One can hope. And then organize. And sometimes that effort will pay off.
Sometimes, though, our struggle is not enough. ALS destroys my body, no matter how many medicines I take or exercises I do. Sometimes, oftentimes, white supremacy, violent misogyny, and rapacious capitalism rip apart our families and destroy lives, regardless of how well we organize. And sometimes, oftentimes, our stories are not powerful enough.
Yet it is in these moments of defeat that hopeful, collective struggle retains its greatest power. I can transcend my dying body by hitching my future to yours. We can transcend the darkness of this moment by joining the struggles of past and future freedom fighters. That is how, when we reach the end of our lives and look back on these heady moments, we will find peace in the knowledge that we did our best.
There is a paradox embedded in the third part of Niebuhr’s prayer, because the wisdom to know the difference between what we can and cannot change can only be earned through struggle. Neuroscientists seek a cure for ALS because they do not accept its inevitability. Organizers rage against the machines of capitalism with that same determination. It is only by refusing to accept the complacency of previous generations that the impossible becomes reality. For me, Niebuhr’s prayer is most true if rearranged: collective courage must come first, wisdom second, and serenity only at the very end.
ACKNOWLEDGMENTS
I hope that the preceding pages have conveyed my abiding faith in the promise of collective action and my deep gratitude to the many people who have guided, supported, and collaborated with me over the years. I will not recapitulate those sentiments here. But I owe to three groups of people an additional credit and thanks.
It was at Claremont High School that I acquired the essential tools for marshaling political theater and human narrative in pursuit of popular democracy. I remain indebted to the teachers who dedicated their evenings and weekends and lives to enriching ours: Dave Chamberlain and Lorna Korber, who nurtured and sustained the speech and debate team; Krista Elhai, whose theater program has been a home to generations of thespians; and Becca Feeney, whose principled commitment to student journalism was for me a powerful model of civic virtue. And I am so glad that my American history teacher, Mike Callahan, introduced me to the notion of left-wing politics.
My friends were similarly influential. Chris Bruner forced me to reconsider my priors and justify my wild assertions. Bryan Collinsworth was with me each step of the circuitous route from preposterous adolescence to house-trained adulthood. And Daniel Clemens, more than anyone else, taught me to stop complaining and do the hard work necessary to win.
Second are the people who have brought this memoir to fruition. I am grateful to Rachel Sussman, my agent, who told me that I had a story worth telling; imagined with me the scope and structure that it could take; and guided me into a brand-new world with confidence and skill. Rakesh Satyal, my editor at Atria Books, believed in me and in this project at a moment when many others did not. This book was shaped by his reminder that on the page, just as in the bedroom and the halls of Congress, the personal is political. Loan Le helped me through the publishing process with enthusiasm and care. And Brad Lander provided invaluable feedback on my first draft, drawing connections and extracting insights that I fully intend to take credit for.
I am deeply honored to call Alexandria Ocasio-Cortez comrade. She is the leader that our movement and our country deserve. And I am thoroughly tickled that Bradley Whitford has lent me his mellifluous voice for the book’s audio version.
My hands permitted me to type only two of the chapters of this book. The rest are the product of dictation and careful listening by Aiyana Sage. On a daily basis, she accompanied me down memory lane, understanding my words long after others no longer could. Her emotional intelligence and constant compassion have been a blessing.
Aiyana also fits in the third group: the people who have cared for my body and my family over the past two years, making it possible for me to participate in our movement’s struggle and to write this memoir. Poppy Jewett, Laura Davis, Mario Diaz, Robert Martinez, and Norma Paz have been saviors. I am incredibly lucky to have found them all. Nate Smith’s friendship and sacrifice have been profoundly moving and also indispensable.
Our community in Santa Barbara has stepped up with generosity and grace. Bridget Queenan, Jeannine DeLombard, Brian Donnelly and Heather Blurton, Mona Damluji and Jia-Ching Chen, and Jamie and Jason File have provided innumerable dinners and baths, carpools and sleepovers and laughs. Carmen Rhodes has been a dear friend and co-conspirator. And Mike Champion and Mark Collier have bravely signed up to join this struggle, helping Carl and me bond on adventures to the motorcycle store, playground, and beyond.
Our families’ love has shone through the darkness of these years just as it did in the brightness of previous ones.
And Rachael King has carried the burdens of ALS with strength and stoicism. Carl and I feel her love and dedication every hour of every day. I am so grateful that she sat next to me in Music Hum. And that she has stayed by my side ever since.
ABOUT THE AUTHOR
ADY BARKAN, called “America’s most powerful activist” by Politico, has dedicated his career to fighting for racial, economic, and social justice. He graduated from Yale Law School and Columbia College. He lives with his wife, Rachael, and their young son, Carl, in Santa Barbara, California. Eyes to the Wind is his first book.
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Interior design by Alexis Minieri
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Library of Congress Cataloging-in-Publication Data
Names: Barkan, Ady. Title: Eyes to the wind : a memoir of love and de
ath, hope and resistance / by Ady Barkan. Description: New York : Atria Books, [2019] Identifiers: LCCN 2019019264 (print) | LCCN 2019020632 (ebook) | ISBN 9781982111564 (ebook) | ISBN 9781982111540 (hardcover) | ISBN 9781982111557 (pbk.) Subjects: LCSH: Barkan, Ady. | Amyotrophic lateral sclerosis—Patients—California—Biography. | Amyotrophic lateral sclerosis—Patients—United States—Biography. | Neuromuscular diseases—Patients—Biography. Classification: LCC RC406.A24 (ebook) | LCC RC406.A24 B37 2019 (print) | DDC 616.8/390092 [B] —dc23
LC record available at https://lccn.loc.gov/2019019264
ISBN 978-1-9821-1154-0
ISBN 978-1-9821-1156-4 (ebook)
Lyrics from “Eyes to the Wind,” written by Adam Granduciel, published by Rough Trade Publishing, reprinted by permission.