The sicker Ady Barkan gets, the more famous he becomes.
“That’s the paradox of my situation,” he said this week. “As my voice has gotten weaker, more people have heard my message. As I lost the ability to walk, more people have followed in my footsteps.”
Three years after a diagnosis of amyotrophic lateral sclerosis, or ALS, a disease that slowly takes away nearly every physical function while keeping the mind intact, Barkan, at 35, is essentially paralyzed from the neck down. A few remaining abilities — to mumble or grunt to get a point across, to eat some soft foods like yogurt or soup — went away this week, after surgery to install a breathing tube to counteract his slowly paralyzing diaphragm.
“I guess I should have a Last Supper tonight,” he said the day before the surgery, on a bright afternoon at his cozy, light-filled cottage in Santa Barbara, California. His wife, Rachael King, a professor of English literature who is pregnant with a daughter, was at his side, and their 3-year-old son, Carl, was at day care.
“Yogurt with rib-eye flavoring,” he joked.
Before ALS, Barkan was an energetic but relatively anonymous foot soldier for progressive causes like rights for immigrants and workers, ending mass incarceration and reforming the Federal Reserve. After getting sick, he became a hero of the left: Politico has called him “the most powerful activist in America,” and he is a social media star and host of presidential candidates. In April, the last time he traveled to Washington, he testified before Congress in support of Medicare for All, a cause he has become more passionate about after fighting with his insurance company to cover the thousands of dollars a month it costs to manage ALS. And this month, he published a memoir.
“Even through his vocalizer, Ady’s powerful words forced an urgency and moral clarity that members could not look away from or ignore,” Rep. Alexandria Ocasio-Cortez, D-N.Y., wrote in the prologue, referring to his testimony. “I saw their discomfort at issuing the usual excuses, and Ady also would not tolerate them — even with many physical capacities gone.”
Barkan’s memoir, “Eyes to the Wind,” was named for a song by the War on Drugs, an indie rock band. It joins several titles in recent years by 30-something authors facing a grim diagnosis and early death, and to which his book has been compared: “When Breath Becomes Air,” by Paul Kalanithi, a neurosurgeon who learned he had metastatic lung cancer at 36; “The Bright Hour,” by Nina Riggs, who died at 39 of breast cancer; and “The Unwinding of the Miracle,” by Julie Yip-Williams, a lawyer who received a terminal colon cancer diagnosis at 37.
The difference is that those books were published posthumously, while Barkan could live for many more years. Typically, sufferers of ALS live three to five years after diagnosis. But others live longer. Stephen Hawking, the physicist, lived for more than 50 years with the disease.
“A long time, for sure,” he said, when asked how long his surgery could prolong his life. “Some folks live for a decade or more. ALS is a death sentence, but no one gives you an expiration date. Which is scary.”
It was in a villa in Italy, where he and King were on vacation in late 2017 and when he could still walk and type, where Barkan started writing his book. He typed the first two chapters himself, dictated the rest and worked on edits with the same technology he now uses to communicate — by using his eyes to hover over letters and words like a cursor on a Microsoft tablet. (To interview Barkan requires submitting questions in advance so he can consider his responses and upload the answers, which are read by a computerized voice.)
The book, as much as anything, he said, is an inheritance for his son, Carl, and his daughter who is due in November.
“I hope someday Carl and his sister read it and feel proud of me,” he said. “In large part, I wrote it for them to remember me by.”
Before getting sick, Barkan was skilled in the art of garnering publicity for an issue. He came to national attention in 2014 by bringing a group of activists to Jackson Hole, Wyoming, where Federal Reserve governors were holding their annual gathering. Since then, he has very deliberately decided to use his disease to attract attention to his progressive causes. He has turned to civil disobedience, and was arrested several times at protests in Washington the past few years.
One early confrontation was with Flake, in December 2017, over the Republican tax bill, which Barkan was speaking out against because he believed it could lead to steep cuts in social services like health care. “You can save my life,” Barkan told Flake, who was then an Arizona senator. “Remember this conversation.” (Flake voted for the bill, but the episode, on video, became a sensation.)
“The way that I have tried to make meaning out of my ALS is to turn it into a weapon for struggle, so that it becomes more than merely tragedy,” he said. “More than merely loss.”
Barkan grew up in California, in Claremont and Pasadena, the son of Israeli immigrants who became history professors. After reading “To Kill a Mockingbird” as a boy, he decided he wanted to be a lawyer. But while clerking for a federal judge in New York after law school, he was drawn to the Occupy Wall Street protests in Lower Manhattan and decided to become a full-time activist, joining a Brooklyn-based organization called the Center for Popular Democracy.
He said he was still guided in many ways by the guilt of white privilege, of the many opportunities he says his solidly middle-class upbringing afforded him: an Ivy League education at Columbia University and Yale Law School.
“One of my professors said that I should hold on to the discomfort and use it as a spur to action,” he said.
In the first days and weeks after his diagnosis, he turned to spiritual thinkers, like Buddhist writer Pema Chodron, and secular works, like Kalanithi’s book, for solace. He developed a meditation practice, which he discussed with Sen. Cory Booker of New Jersey, who is running for president, in their conversation for his video series with candidates called “Uncovered,” part of his political action committee Be a Hero.
As the disease progressed, that fell away. “I actually don’t meditate anymore.”
He added: “The activism is my practice. When ALS gets me down I focus my anger at racism and capitalism.”
As Barkan lives with his disease, there are two conflicting impulses he wrestles with — the “radical acceptance,” in his words, that his disease demands, and the refusal to accept things as they are that is at the core of political organizing.
He can no longer hold Carl, but technology has allowed them to share books and videos. Each day he and King are sure to “carve out some quiet moments.”
“A lot of this is about compensating for not being the father and husband I want to be,” he said, of his activism.
Barkan is clearly pleased with how he has helped shape the debate on health care during the Democratic presidential primary race. He has not endorsed anyone, other than saying he hopes the nominee is “someone other than Biden,” the only candidate who has not agreed to meet him. He praised Sens. Elizabeth Warren of Massachusetts and Bernie Sanders of Vermont for their support for Medicare for All, and said of Booker, “I was more impressed than I expected to be.”
In a presidential debate in July, Warren referred to Barkan, saying he “has ALS and it’s killing him. Ady has health insurance, good health insurance, and it’s not nearly enough.”
She continued, “this is somebody who has health insurance and is dying. And every month he has about $9,000 in medical bills that his insurance company won’t cover.” (After his tracheotomy, King said that figure could be $15,000 to $20,000 per month because he will need round-the-clock care.)
So has he learned anything about living and dying that he wants people to know?
“Well, I don’t want to give away the secrets that are in the book,” he says. “Folks should pony up if they want some dying-man wisdom.”
This article originally appeared in
.