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Dying Activist Ady Barkan’s Memoir About ALS Is A Crucial Guide To Life

On the first page of his memoir, Ady Barkan and his wife Rachael King arrive at a hotel for their first night away from their new baby and — despite their nearing dinner reservation — decide to have sex. Days later, Barkan is diagnosed with ALS.

Amyotrophic lateral sclerosis, sometimes known as Lou Gehrig’s disease, has a life expectancy of two-to-five years. Barkan was diagnosed in 2016, when he was 32. Over the course of the book, we watch him lose the use of his left hand, then his ability to run, then to hold his son. He goes for his last walk, he gives his last speech, he loses control of his bowels. And he wants us to know every excruciating detail. In his new memoir “Eyes To The Wind: A Memoir Of Love And Death, Hope And Resistance,” Barkan explains how and why he has turned his death into a public protest.

This death-as-political-theater begins the moment Barkan ceases to be a healthy person and becomes a patient. After explaining the diagnosis, the doctor asks Barkan and King if they want time alone. “I said no,” he writes. “I wanted her there, sharing our sorrow…I wanted her recognition that my case was tragic and shocking and unreasonable…I wanted her to cry, too.”

A paragraph later, the doctor is in tears.

Thus begins what Barkan calls his “working theory of how to handle my decline and death,” the thing that turns him into a scrappy personification of the famous Hillel quote (“If I am not for myself, who will be for me? If I am only for myself, what am I? And if not now, when?”) To Barkan — a lawyer and activist by way of the Ivy League, and the product of two Israeli-American academics — the slow and painful death of a young person is unjust. And there is nothing dignified or respectful, he believes, in concealing evidence of injustice.

Barkan was a social activist long before his illness, leading headline-grabbing campaigns with The Center For Popular Democracy — but his diagnosis charged his activism with unbearable urgency, and linked him with marginalized Americans. “A more complete and satisfactory answer to the question ‘Why me’ is ‘Because the world is unjust,’” he argues.

And, as Barkan cheerfully explains, dying is great for an activist-lawyer’s agenda. He creates optics so intense that varsity-level suffering deniers are forced to hear him out or appear monstrous. It’s no coincidence that practically every bleeding heart with a Twitter feed — Elizabeth Warren, Bernie Sanders, Kamala Harris, Cory Booker, Julian Castro, Adam Schiff, Joe Kennedy III, Ilhan Omar — has endorsed his work or partnered with him. (Presented, undoubtedly, with the entire progressive glitterati, it’s interesting that he selected Congresswoman Alexandria Ocasio-Cortez to write the book’s foreward.)

Barkan has turned the last three years of his life into a giant political Make A Wish. And in his book, which will make you weep so hard you will be left with a handful of pulp in shiny binding — he explains how he did it.

First, he ate. “Crispy and aromatic pizza,” “chili lamb and cold noodles,” “warm burkes,” “a giant bowl of umami-rich pork broth ramen overflowing with wide, chewy hand-pulled noodles.” Knowing his days eating solid foods are limited, he goes to Italy, where he crams decades of life into days, eating at least three types of pasta at every meal, then crying. It is in these passages — perhaps more than when he describes his run-ins with Janet Yellen or rising cheerfully at dawn for a protest — that Barkan is the most relatable. Who hasn’t cried after eating too much pasta?

But mostly, his secret is being loved by good people. His father cries with him, his step-mother runs with him, his brother uses his voice, Moses-and-Aaron-style, when Barkan’s becomes too weak. His best friend puts his life on hold to care for him full time. And then there’s his wife Rachael King, whose memoir often seems like the one we should really be reading — we see her succeed in academia, win the family’s house in a bidding war, care for her husband and their toddler, and choose to walk a mile to the hospital just before giving birth.

And still, the load on Barkan is heavy. “When we moved to California in 1989 when I was five years old,” he writes, “My father planted an avocado sapling in our backyard and tried to grow another from a pit suspended in water.” Barkan and King later replicate the trick at their home in Santa Barbara. “Will I live to eat its fruits?” he wonders. It’s a nearly point-for-point retelling of the first-century Jewish story by Honi the Circle-Maker of an elderly man planting a carob tree, which doesn’t produce fruit for seventy years. And though Barkan’s main religious affiliation is to democracy, his “mantra” is almost verbatim a line from the Mishna: “Do what you can, while you can.”

This mantra became “Be A Hero” — a six week tour of the country during the summer of 2017, consisting of 90 events spreading Barkan’s “Do what you can, while you can” gospel. He riled up rallies with talk of debt free education and job guarantees, bolstered midterm candidates, and, with great satisfaction, left rooms full of millionaires in tears.

“Maybe this whole thing is an elaborate vanity project to make me feel better about myself before I die,” he writes. But then, as Be A Hero came to an end, Barkan launched a new project — a fund of donations set to go to Maine senator Suzanne Collins, should she vote against Brett Kavanaugh’s confirmation, or else to her opponent. Millions poured in.

The final pages of Barkan’s book describes the lengths activists went to sway Congress members during the Kavanaugh/Christine Blasey Ford hearings. He describes the eleventh-hour scene in which a pair of activists — Barkan’s colleague Ana Maria Archila and a first-time activist named Maria Gallagher — cornered Arizona Senator Jeff Flake in an elevator and beseeched him to hear the stories of their rapes. When you watched it on TV or on YouTube, you probably didn’t hear that Maria Archila started her testimony by naming Ady Barkan. But you saw his thesis. “Look at me when I’m talking to you,” Gallagher shouts at Flake. “Don’t look away from me.”

Of course, Flake voted in Brett Kavanaugh, and the protesters’ battle was lost, and Barkan found himself bereft, eating Indian food, not just crying but “full-bodied wailing.” But not hopeless.

“It is in these moments of defeat that hopeful, collective struggle retains its greatest power,” he writes. “I can transcend my dying body by hitching my future to yours.”

In other words — look at me when I’m speaking. Don’t look away from me.

You can purchase “Eyes To The Wind: A Memoir Of Love And Death, Hope And Resistance,” here.

Jenny Singer is the deputy life/features editor for the Forward. You can reach her at [email protected] or on Twitter @jeanvaljenny

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