It’s a typically perfect day in Santa Barbara, endless blue sky above the mountains and warm sun on the skin. Ady Barkan’s house, set off one of those quaint California streets where the power lines weave themselves around the palm trees, looks like a perfect place for a young family to live. It radiates happiness, a place of contentment and a peaceful life; hummingbirds can be spotted flitting about, drinking the nectar of purple flowers. The street is still and empty in the middle of the day, but it’s easy to imagine the neighborhood kids taking over as the afternoon arrives—the little front yards filling up with the rowdy laughter of the young, freed from adult restrictions for a time. One of those children lives at this house: Barkan’s toddler, Carl. But Carl’s father cannot join in the fun, or even hold him in his arms. Barkan was diagnosed with ALS just four months into Carl’s life. The disease is killing him.

Over the past three years, Barkan has lost control of his body—struggling to run, then struggling to walk, then confined to a wheelchair, finally unable to move his arms. In September, Barkan had a tracheostomy, a surgical procedure that inserted a tube into his windpipe, which allowed him to breathe using a ventilator, and thus stay alive longer. There was a cost, however: The procedure robbed him of his ability to eat or speak. He now speaks using a computer that tracks his eye movements. ALS, he told me during our interview last week, is “the story of things becoming impossible.” The surgery has only delayed the inevitable; ALS is a relentless disease with no cure.

Barkan is the silent, steady center of an ever-spinning swirl of noisy activism. “Seriously, it’s like Grand Central Terminal in here,” he said of his often-busy living room. While I was there, I also met two of his caregivers, his assistant Aiyana, his wife Rachael, and a documentary filmmaker with the Democracy Alliance, who filmed Barkan reading a statement to camera. This was apparently a typically busy day in his household. I asked him if it was difficult to manage such a full schedule of activism while also living with his disease; he said it “doesn’t always feel that way.” That activism, he said, “has given me a real sense of purpose, and has me focused on things I still can impact and control.” He nevertheless noted he has an “entire team” of helpers at the Be a Hero PAC, the organization he founded last year to defeat Republicans, like senators Susan Collins and Mitch McConnell, at the ballot box. He credits his five “exceptional” caregivers, to whom he is “totally dependent and indebted,” for keeping him “alive and comfortable, and able to work.”



If you ever want to feel humbled, have a guy who can’t speak, who’s in the clutches of a deadly ailment, ask you how your migraine is.

I sent Barkan’s team my questions in advance, to allow him the time to write out his answers. Had I asked them on the spot, it would have taken all day for him to type them out with his eye movements. But even deprived of his ability to speak, he still sought out moments for spontaneous conversation, at one point inquiring of me what I thought UK Labour leader Jeremy Corbyn should be doing differently. The night before our meeting, I had told his team that I would have to miss an event they’d planned at the University of California at Santa Barbara because of a tenacious migraine. Barkan made a point at our meeting of asking me how I was doing. If you ever want to feel humbled, have a guy who can’t speak, who’s in the clutches of a deadly ailment, ask you how your migraine is.



Barkan’s house is full of painful reminders of the life he and his family should have lived, a future stolen from them by this disease: travel guidebooks on the bookshelves; stacks of toys and books for his toddler. The most visceral reminder of all is his wife, Rachael King, who is due to give birth to their second child soon. It feels maudlin, almost obscene, to write or even think about a stranger’s death in such a way, but Barkan has never been shy about talking about his death. He puts his illness—which he wrote about in his memoir, Eyes To The Wind—and the awful fact of what’s to come, to good use, advocating for Medicare for All. In an interview with The New York Times last month, Barkan told the paper: “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.”

