Three years ago, Ady Barkan, a longtime activist and a leader of the Fed Up campaign pushing for policies that would encourage full employment and higher wages, was diagnosed with amyotrophic lateral sclerosis (ALS).
The neurodegenerative disease, which paralyzes the body and has an average survival rate of three years, has put Barkan, now 35, in a wheelchair. He can no longer speak on his own. But he remains an organizer for the Center for Popular Democracy, now focusing on health care after co-founding the Be A Hero Project, and in April came to Washington from his home in California to testify for the Democrats' Medicare-for-all bill. He spoke assisted by a computer.
Barkan's memoir, "Eyes to the Wind," is being published Sept. 10. He was interviewed recently by Lucy Kalanithi, host of a forthcoming podcast about hardship. She is an internist on the faculty 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 from their conversation, edited for clarity and length:
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: There were, perhaps, two different components to my acceptance. 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. It was informed by my awareness of my tremendous privilege compared to most of the world's 7 billion people and the others who came before us. 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: I wanted to ask your thoughts about marriage or partnership, because obviously parenthood and illness can both affect a marriage. First, I'll ask you what you love about your wife, Rachael.
A: I love her independence and her drive. I love her sense of responsibility and integrity. I love when she shakes and tears up with full-body laughter. I love her memory and her patience. I love her bright orange hair and I really love the streaks of silver that have been spreading throughout it in recent years.
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 are easy to love. It's much harder to love my drooling mouth or my limp hand or my weak bladder that makes a huge mess for her to clean up. 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.
What was the experience of caregiving like for you?
Q: My overwhelming experience of it, frankly, was ferocity. A ferocious version of love. There were so many things that I couldn't protect [my late husband] Paul from. Dying of cancer being the biggest one. But I was crazy devoted to trying to mitigate the things I could.
One of the things I thought about a lot was that when you are sick - when your life is shortened, when your abilities go away - you can start to feel like an object instead of a subject in charge of your own life. It's a weird feeling, and for Paul, as a neurosurgeon . . . he was pretty used to being in charge of everything.
So, how could I support him in remaining an agent? And then, in our own lives, he remained such an agent to me in many ways. We had a new baby at the time, like you do - our daughter was 8 months old when Paul died. But all through that last year when she was a baby and he was really sick, I was having the catastrophic thoughts of new motherhood. And I remember at one time, when we were sleep-training [our daughter] Cady, I was like, "This is going to scar her for life!" And he said, "You know, if she needs therapy later, it's not going to be because of sleep training." It was such a fortifying comment. He was able to support me. I carry a lot of things that he said forward.
A: Sleep training is the best. We did it the week of my diagnosis because we just shut the door and were crying with each other and with our family on the phone.
Q: That's a lot of crying!
A: We did it out of desperation, but [our son Carl] made it easy.
Q: How do you find connection with Rachael these days?
A: Now, as I have become more disabled, one of the central tensions is that we either need to have a caretaker in the house with us, or Rachael needs to be in a caretaking role when we are alone.
We try to carve out a few times a week when we can just sit and talk or watch some TV. We bond over and with Carl [who is now 3], who is ridiculous and hilarious. We have a constant stream of friends and family visiting.
I think the key is to maintain a generosity of spirit towards ourselves and each other and to keep the communication that we've always had.
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. We felt very much in control of our lives. 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. I think that is how we proceed.
Q: What has it meant to you to return to being an activist since your diagnosis?
A: Returning to activism has been a salvation for me. It has helped me form deep bonds of solidarity. It's given me a sense of agency and power despite the disintegration of my body. 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: He's rambunctious and outgoing and hilarious. He's stubborn like a mule. He's delicate and sometimes cautious. He's provocative and silly and disobedient. Sometimes he's empathetic and often he's callous. He's inquisitive and he's chunky and he is full of life.
I have very simple and cliched hopes for him. I want him to be happy. I want him to find purpose and meaning. In terms of what we are doing to pursue that, the biggest thing is that we've decided to try to give him a sibling so Rachael is now pregnant with a girl.
Q: Congratulations! Wow! 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 for years and decades to come. 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?