Dad & Activist Can't Hold His Son Anymore Because of ALS — but He's Not Going to Stop Fighting Yet
"A hundred times every day, I despair at my inability to tickle and chase Carl," the author tells PEOPLE about his 3-year-old son
How do you keep living when your life has an expiration date?
What do you say to your young son when you won’t see him grow up?
These are the painful questions activist Ady Barkan, who was diagnosed with ALS in 2016, addresses in his new book, Eyes to the Wind: A Memoir of Love and Death, Hope and Resistance — which he wrote in part so his 3-year-old son, Carl, will be able to remember him after he dies.
Because of ALS, which is terminal and is slowly shutting down his body, that end will come far too soon.
“Every day since my diagnosis, I have struggled to know what to accept and what to resist. Such radical acceptance is in tension with my identity as a movement builder,” writes Barkan, 35, whose political activism in support of causes such as universal health care has brought him to national attention and into the same circles as Congresswoman Alexandria Ocasio-Cortez (who wrote the book’s foreword) and Sen. Bernie Sanders.
Only 32 when he was diagnosed, Barkan opens up in his memoir about his painful journey to find meaning as he transitioned from a social justice lawyer to an activist who continues to speak out, even as he’s lost control of his body.
He also writes about how greatly his relationship with his wife, Rachael, and their son has changed.
Now completely paralyzed, Barkan edited the book with his eye movements, using Eye Gaze technology.
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“We were the happiest and luckiest people we knew,” Barkan writes of the time before his diagnosis. He and Rachael married in the fall of 2015 after a decade together, and they welcomed son Carl in 2016, just about four months before his body showed signs of its destruction.
ALS is an incurable nervous system disease that weakens nerve cells in the brain and spinal cord, eventually killing them off. The prognosis is grim, though it depends on the person: The average survival time post-diagnosis is three years, but 20 percent of patients will live to five years, 10 percent of others will live another 10 years and 5 percent more will live 20 years or longer.
In Eyes to the Wind, Barkan recalls the last time he held his son. He knew it was the last day, because he fell with Carl in his arms. (The boy was uninjured.)
“I cried and cried, apologizing to him and bemoaning my lot in life,” Barkan writes. “I knew that this would be the last time I could carry Carl in my arms. ALS was destroying my ability to be a good father.”
Barkan, even if slowed down by his health, has not been stopped: He continues his social justice work and used the spotlight of his own condition as a way to advocate for the Affordable Care Act and “Medicare for all.”
In his memoir’s foreword, Ocasio-Cortez remembers her first meeting with Barkan in the summer of 2018, after he decided to attend one of her rallies in the Bronx.
“The prevailing emotion I recall upon meeting Ady for the first time can be summed up as: Peace,” she writes. “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.”
The congresswoman was deeply moved by Barkan’s speech at the rally, as well as his previous testimony at the first congressional hearing for Medicare for all, she writes. (Though he had to rely on a vocalizer, Barkan “was the strongest person in that room,” according to Ocasio-Cortez.)
“Ady’s example is for all of us to follow,” she writes. “There is no act too small, no person too powerless, no moment too late to make a difference. The revolution rests in each of us.”
PEOPLE recently spoke with Barkan about his memoir, fatherhood, his joys and facing the “impossible.”
You write about trying to accept your diagnosis, even as you experienced anger and despair. Are you able to find some joy or is that too difficult?
Joy is tough to come by these days. A hundred times every day, I despair at my inability to tickle and chase Carl, as I could have done just a few short years ago. I’ve lost the ability to go for hikes, or have cocktails on the beach, to give hugs or to turn the pages of a book. A lot of the things that made me happy are things I can’t do anymore. It still makes me happy to spend time with Rachael and Carl and our friends and family. And it gives me a sense of purpose to fight for political change. Joy is rare, but it is there. Mostly, I’m just shooting for some sense of peace amidst the sadness.
Your symptoms are progressing at such a fast rate. How does that impact your sense of the future? What are the biggest daily challenges you face?
The progression is actually pretty average for ALS. Which is, indeed, way too fast. The hard part is just not being able to do things I used to do so easily, and having to rely on other people for everything. It’s hard to communicate. I sleep very few hours a night. I am uncomfortable most of the time. Worst of all, not being able to play with Carl pains me every single day. The thing I’ve tried to learn how to do, though I’m not always successful, is to accept those feelings, instead of fight them.
What do you want the average person to know about the health insurance industry and the changes you’ve campaigned for?
I want people to know that it doesn’t have to be this way. Right now, millions of people are uninsured, even more get necessary care denied every year by their insurance companies, and too many people are cutting their pills in half because they can’t afford the cost of prescriptions. Endless hours on hold, fighting with insurance industry representatives who have a built-in profit motive to try and deny coverage to people. That system works great if you’re an insurance or pharmaceutical industry executive, but it doesn’t work for anyone else, and it just doesn’t need to be this way. Other countries have figured this out, and they pay far less for health care even as they ensure that every single citizen gets guaranteed care as a birth right. We can have a better system that’s built for people instead of profits, it just means each of us needs to step up and demand that change from those in power.
What have you most enjoyed about your relationship with Rep. Ocasio-Cortez?
She is truly such an extraordinary leader. I had really high hopes for her coming into office, and it’s safe to say she’s blown them out of the water. Her voice is strident and true in its simple, moral clarity and she’s already had such an extraordinary impact on what we imagine as possible in our politics. Perhaps most remarkably, I’ve personally experienced her to be an exceptionally kind, warm and caring person even as she catapults to her new role as a national moral leader.
Can you tell me more about why losing your voice was one of the most devastating developments? How are you emotionally coping with that change?
ALS is the story of things becoming impossible. Things I used to take for granted, like going for a run, are simply not possible. The hardest part, by far, has been not being able to speak for myself. Having to type things out one letter at a time means there are hundreds of things I want to say every day that I just can’t get out there, phone calls I want to jump in and say things on, and things I want to say to the people closest to me that it’s just too much time and effort to articulate. It’s truly horrendous. And yet, I am so grateful for the technology that does allow me to communicate. It is a lifesaver.
Eyes to the Wind is on sale now.