ALS Stole My Ability to Speak, But I Still Have So Much to Tell My Son
Activist Ady Barkan can no longer speak due to his ALS diagnosis, but that does not stop him from fighting for medicare for all and reading with his 3-year-old son. Here’s his story in his own words.
Activist Ady Barkan became a viral sensation this spring when he testified in favor of Medicare-for-All to a Congressional committee. Barkan, 35, was diagnosed with the terminal neurodegenerative disease ALS in 2016 and traveled cross-country from California to Washington D.C. to testify. Because he can no longer speak, he addressed the House Rules Committee using a computer trackpad that sensed his eye movements to form his words. He still has a voice and continues to use it to advocate for "a more rational, fair, efficient, and effective" healthcare system. Only now, a computer is 'speaking' for him.
His memoir, Eyes to the Wind: A Memoir of Love and Death, Hope and Resistance, tells of his relationship with his wife Rachael and 3-year-old son Carl—and also of Barkan's early career as a progressive activist, organizing for issues like workers' rights, international access to medicine, and criminal justice reform. But a few years ago, when Politico (who called him "the most powerful activist in America" in a recent feature) asked him what his favorite book of the year was, he didn't respond with anything political. He named Goodnight Moon, the classic children's book, because it was what he read most to Carl.
Here, in his own words, Ady Barker shares about his new book, his love of Goodnight Moon, and the importance of reading to your children.
Reading to Carl was one of my life's greatest pleasures. At the end of the day, sitting with my little man on my lap focusing together on the colors and shapes and sounds of each page, watching them flip over to reveal a new vista, I was fulfilled and at peace. I had everything I needed, right there in that armchair.
Rachael and I were always very committed to a regular evening routine for Carl, and reading to him as a baby was an important part of that. Dinner at 6 p.m., bath at 6:30, stories at 6:45, songs and lights out at 7 p.m. I believe the routine was invaluable for helping him be an excellent sleeper. I hope that the reading also helped him develop his strong language skills. And I hope it made him feel loved. I am also confident that, in his life, he will always love books and reading. His mother is an English professor, after all. It's in his blood.
The reason why I named Goodnight Moon as my favorite book that year was that I loved the rhythm and the calm and the bright colors and the sense of home. It was reassuring to end every day with the same message. 'Good night, room. Good night, moon. Good night, cow jumping over the moon. Good night, light and the red balloon.' And I loved reading a book that I had grown up with.
Because of the progression of my ALS, I had to stop reading to Carl alone when he was about 1 or 1 ½ because I was no longer able to hold him and the book at the same time. At that point, Rachael would hold him and I would read, or sometimes I would hold him and read while Rachael held the book. I stopped reading to him altogether in late 2018, when he was about 2 ½ because I could no longer speak intelligibly.
Losing my ability to speak has been by far the worst part of having ALS—far harder than losing the ability to walk or eat or use my hands. And there is nobody I want to talk with as much as I want to talk with Carl. I have so many things I want to share with him. So many conversations I wish we could have.
Now I talk using eye gaze technology and a synthetic computer voice. Carl and I definitely still communicate and have a relationship, but it takes me a long time to speak and he is a toddler who moves very fast. But he is learning to be patient with me. And almost every evening, he sits on my lap and we watch storybooks read aloud online. There are thousands of great ones to choose from.
I have a feeling there may be parents—especially in these times—who are feeling too tired or too burned-out to read to their kids. People have busy and demanding lives, and I don't want to shame anyone for failing to be the perfect parent. But I think it always helps to be reminded about how quickly the years pass by and how important it is to be thoughtful and intentional about how we use our precious time on this earth. To that end, I dedicated my memoir to Rachael and our children, and theirs. This book is my gift to them.
As for the future, life surprises you—we are expecting a baby girl in November! And, as I mention in Eyes To The Wind, Carl will soon get to the age at which he will begin making life-long memories. I want to be there with him when he does. I also wonder if I could try writing a few children's books as well? We'll see what the future holds.