Three years ago, Ady Barkan, leader of the Fed Up campaign pushing for policies that would encourage full employment and higher wages, discovered he has amyotrophic lateral sclerosis (ALS).
The neurodegenerative disease has an average survival rate of three years. Barkan, 35, is in a wheelchair and can no longer speak on his own. But he remains an organizer for the Center for Popular Democracy after co-founding the Be A Hero Project. Barkan, whose memoir, “Eyes to the Wind,” was published Sept. 10, spoke assisted by a computer with Dr. Lucy Kalanithi, an internist at the Stanford University School of Medicine and widow of neurosurgeon Paul Kalanithi, who wrote the memoir “When Breath Becomes Air.” Here is an excerpt:
Q: You have built this whole career defined around resistance and resisting injustice, and then you suddenly become a person for whom acceptance is this big priority, and the resistance part has to recede. How did you get there?
A: The first was intellectual : acknowledging that the disease is no joke and no bad dream, that it will almost certainly kill me and that the long future we had planned for was not going to happen.
That intellectual acceptance happened very quickly. … Knowing what others have gone through made me feel less disbelieving that this could happen to me. But I think when we talk about acceptance, we mean something deeper, like finding peace in the new reality.
Finding that peace is an ongoing endeavor. I learned to meditate with the help of a video from Jon Kabat-Zinn. Pema Chodron’s book, “When Things Fall Apart,” was very useful. But my main method of working through these issues was to spend a lot of time talking with my friends and family.
Q: When you get married, you’re signing up for an unknown path together — loving somebody and all the ways they change.
A: Well, her silver streaks [in her hair] are easy to love. It’s much harder to love my drooling mouth or my limp hand or my weak bladder. … ALS imposes enormous strains on both of us and on our relationship. We can’t have the same partnership we used to. We see a couple’s therapist through a local hospice and we try to ease the burdens on one another, but it is a fierce, overpowering disease and we struggle every day to be our best selves for one another.
Q: Do you think about marriage any differently from how you used to?
A: Before my diagnosis, we really were the happiest and luckiest people we knew. … I remember that the week before, the biggest stressor on my mind was that grass kept growing in my succulent garden. Now we have bigger challenges. But we focus on this moment, we are grateful for what we have.
Q: What has it meant to you to return to being an activist?
A: Activism is liberating me from ALS because it brings me out of my body and into communal space; it ties my future to yours. It even lets me live on past my death in the memories and struggles and dreams of my comrades. It has power greater than death.
Q: Tell me about your son, Carl, and what you hope for him.
A: I have very simple and cliched hopes for him. I want him to be happy. I want him to find purpose and meaning. … We’ve decided to try to give him a sibling so Rachael is now pregnant with a girl.
Q: How did you come to the decision to have another child?
A: Rachael and I started from a baseline that we had expected, when I was healthy, to have more than one child. We were scared about what it would mean for me to be totally paralyzed with an infant. Part of the calculation was about these coming few years, and how enjoyable and meaningful and difficult it will be to have a second child. An even bigger part was thinking about what it would mean for Rachael and Carl to have another family member. … We decided that the joy and happiness and laughter and meaning would be well worth the difficulty and the sadness.
Q: Love is big, right?