Barkan - Eyes to the wind: a memoir of love and death, hope, and resistance

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Copyright 2019 by Ady Barkan

All rights reserved, including the right to reproduce this book or portions thereof in any form whatsoever. For information, address Atria Books Subsidiary Rights Department, 1230 Avenue of the Americas, New York, NY 10020.

First Atria Books hardcover edition September 2019

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Interior design by Alexis Minieri

Jacket design by Milan Bozic

Jacket photograph Getty Images; Shutterstock

Author photograph by Michael Nigro

Library of Congress Cataloging-in-Publication Data

Names: Barkan, Ady. Title: Eyes to the wind : a memoir of love and death, 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 sclerosisPatientsCaliforniaBiography. | Amyotrophic lateral sclerosisPatientsUnited StatesBiography. | Neuromuscular diseasesPatientsBiography. 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.

For Rachael and our children and theirs

Like a train in reverse down a dark road

Carrying the whole load

Just rattling the whole way home

....

Ill set my eyes to the wind

But it wont be easy

To leave it all again

Just a bit run down here on the sea

Theres just a stranger

Living in me

THE WAR ON DRUGS, EYES TO THE WIND

Ady and I met on two separate occasions, roughly one year apart. The first instance was in a hot, sweaty Bronx church in the summer of 2018. It was shortly after I had won my primary election, and in the overwhelming shock of sudden attention, our way of dealing with it was to continue organizing as we had been. That day, that meant a labor town hall with local labor unions in the Bronx, rallying around the issues that held the most promise for transforming our communitys life: among them letter carriers rallying for postal banking, sanitation workers demanding protections in the wake of several deaths, and of coursenurses advocating for single-payer Medicare for All.

A day or two before the rally, we had learned that Ady wanted to stop by and join the workers fight during his New York leg of the Be a Hero campaign. I was stunned(You mean the Ady Barkan?)yes, the Ady Barkan, who had been putting his body on the line to save the ACA, fight for Medicare for All, and advance the causes of working people across the United States, wanted to come to our humble rally in a sweaty church with spotty A/V equipment oft-used for progressive organizing.

There were scrambles to make it workthe day of, we learned there werent sufficient ramps in the pre-ADA constructed church to be accessible enough for Adys motorized chair. This launched volunteers on a wild-goose chase. We needed to procure a ramp from somewhere , same day, to make it work. Their resourcefulness prevailed, and a few hours later, Ady arrived with his devoted wife, Rachael, to meet me in the grassy backyard of St. Pauls Evangelical Lutheran Church.

The prevailing emotion I recall upon meeting Ady for the first time can be summed up as: Peace. It was the kind of overwhelming peace that accompanies the eye of the storm, where chaos and rallying and cheers and swarms of cameras orbited the perimeter, but for that one moment, we met to assert a sense of grounding and a desire to connect on a most human level. I thanked him and Rachael for coming. They told me that they used to live in the Congressional district. His father came. We talked about the travel; their little baby, Carl; the larger progressive movement. And then we filed into the church with everyone else.

We listened to service workers, Teamsters, CWA members, and everyday people in the community. We rallied and organized campaigns on health care and a living wage. After about an hour or two, we got up. By that point, Ady could still speak, but he couldnt hold his microphone, so I held it for him. It would be the first and last time Id hear his voice offer remarks in public.

His words were stirring. It was clear that the added difficulty in speaking forced a profound clarity in how Ady communicates with others. He did not have the luxury of wasting breath on half-thoughts. He, along with so many others for so many reasons, is asking us to act now.

The urgency is real. However, it is not oppressivewhat Ady tells us is that we are not being asked to save the world in a day. We are simply being asked to Do Something, today. There is no something too small. Because when we all do something, we will change the world as a matter of course.

A few months after that initial meeting, I encountered Ady again. This time, it was in my congressional office in the Cannon Building of the Capitol. The walls were still bareI was still moving inand the room was crammed with activists, staffers, and journalists. Ady had just testified in front of the first-ever congressional hearing for Medicare for All. It was a momentous daythe hearing was in front of the Rules Committee, a small but important step, and we had to fight a great deal to get Ady a seat at the table and prevent lobbyists from settling all the terms. It worked, and that day demonstrated the power of personal testimony. Even through his vocalizer, Adys powerful words forced an urgency and moral clarity that members could not look away from or ignore. I saw their discomfort at issuing the usual excuses, and Ady also would not tolerate themeven with many physical capacities gone. He was the strongest person in that room that day. And he prevailed: in no small part due to Adys role, Medicare for All was offered a second hearing before the powerful Ways and Means Committee, with powerful jurisdiction that set a high precedent to legitimize and advance the legislation.