by Ady Barkan
Throughout my clerkship year I was witness to top-notch litigating, both by $1,000-an-hour corporate partners and by civil rights attorneys dedicating themselves to the movement. These lawyers, from organizations like the New York Civil Liberties Union, designed wide-ranging impact litigation that sought to push back against some of our government’s most egregious injustices. They did impeccable research, marshaled drawers full of evidence, wrote succinct and powerful briefs, and displayed tremendous skill in the courtroom. But I knew that they were also toiling away in tedious obscurity for much of their year: buried in document review, having exhausting and endless disputes over interrogatories and requests for admission, waiting months and even years for courts to issue opinions that might let their litigation continue. And, as in the Chinese restaurant case, they might wait for many years before ever delivering a modicum of justice to their clients.
The alternative? To become a full-time activist, wearing jeans to work and spending my time in the streets outside of City Hall and the hallways of Congress, rather than in the courtroom. Progressive organizations and coalitions are always in need of lawyers with a good head for public policy and the ability to identify politically viable solutions.
Legal research and writing were intellectually stimulating: sitting with the evidence and the law and crafting a powerful argument was like fitting together the pieces of a vibrant multifaceted puzzle. I could lose myself for hours in the work, and each new case or law review article could provoke and stimulate my mind. But my heart was elsewhere. Arguing about public policy, organizing protests, convincing a reporter that my cause was worthy of front-page coverage—these were the activities that got my blood pumping. This was not the usual work for Yale-trained lawyers who had clerked in the Southern District of New York. But it was the work that called to me.
So, as my clerkship came to an end and I told Judge Scheindlin that I was turning down an offer to go work at a civil rights law firm across the street in favor of a position with a new organization called the Center for Popular Democracy, whose offices were located in some hard-to-reach corner of Brooklyn, she was skeptical and perplexed. But she wished me well and insisted that I stay in touch. I promised her that I would.
In the evenings that fall, I often found myself walking back to Zuccotti Park, sometimes bringing along a friend or visitor who had heard about the would-be revolutionaries and wanted to witness them for herself. One late evening comfortably back home, I received an emergency text message. The Bloomberg administration was planning to clear the park and destroy the encampment. The only way to stop them was by filling the adjacent streets with thousands of protesters, making it logistically and politically impossible for the police to invade.
I got back on the subway and headed downtown. When I arrived at Zuccotti Park, there were a couple thousand people milling about. I found Joe Dinkin, a friend from college who had spent every day since graduation at the Working Families Party, trying to move New York politics to the left. It was Joe’s mass text message that had brought me to the park that night. We traded gossip and rumors and reflected on the unexpected revival of radical political action in the city.
The Working Families Party, founded at the turn of the century, aspired to organize progressive labor unions and community groups into a potent force by supporting left-wing candidates in Democratic primaries and pushing an ambitious city and state policy agenda. Through hard work and creativity, it had become the organizational home for left-wing politics in New York State, electing real champions to office and winning important policy victories like the repeal of the Rockefeller Drug Laws and an increase in the state minimum wage.
But Occupy Wall Street was a different beast. Its ideology was fiercely anti-organization. Its rhetoric fiercely anti-compromise. It was a movement with no clear leaders, no IRS employer identification number, and certainly no five-year strategic plan.
Joe and I talked big-picture strategy about what the Working Families Party should have been doing in that moment. We wanted more than anything to help the Occupy Wall Street movement translate raw energy into immediate impact and lasting political power, but we were worried that the party’s help would not be welcomed by the activists in the park—or, conversely, that too much organizational interference might squelch the energy of the movement.
Nelini Stamp was the Working Families Party staffer assigned to Zuccotti during those weeks, and she knew that the party had to try to thread the needle properly. Popular political energy sparked too rarely. And the arrival of those sparks—when mass numbers of people were suddenly alerted to the injustices around them and inspired by a vision for an alternate future—was a precious, fleeting opportunity. If those sparks were to transform the world around them, if they were to grow into a roaring blaze that swept away even some of the structural forces or ideological detritus that constrained our freedom to thrive, then they had to be nourished by kindling and fuel sufficient to overcome the establishment’s fire hoses and helicopter drops. Strong organizations with resources, relationships, and capacity, Nelini and Joe and I believed, needed to provide that kindling and that fuel to ensure that a bright moment of energy would not dissipate upon contact with the first firefighter.
Suddenly a wave of enthusiasm spread through the crowd. The NYPD had announced that it would not be clearing the park that night: the prospect of violently arresting thousands of energetic protesters was too frightening even for bellicose Mayor Michael Bloomberg and Police Commissioner Ray Kelly. We hooted and hollered, delirious with the momentary sense that our popular revolt could defeat the money of Wall Street and the guns of America’s militarized-policing industrial complex.
Within two months those police officers returned, dismantling the Occupy Wall Street encampment with the ferocity of victorious counterrevolutionaries. What remained was a newfound political awareness—both in my mind and in the mind of the nation. New concepts became entrenched truths of American political discourse: that the 1 percent have too much wealth, corporations too much political power, and elected officials too little accountability to the public.
That newfound political awareness became a potent force in American politics—potent enough to bring a democratic socialist within striking distance of the presidency—yet too impotent to prevent the ruling class from reasserting its dominance over national politics and enacting a legislative agenda that exacerbates economic inequality and political disenfranchisement. Our kindling proved too meager, their fire hoses too overwhelming.
Six years later, my body wrecked by ALS and my political optimism shattered by Donald Trump’s victory, I sat in a wheelchair in the halls of Congress and tried to bring back the spark of Occupy Wall Street, tried to once again light a fire under the political imagination of our nation. After a whirlwind day of meetings with senators and interviews with reporters, a few dozen protesters and I rolled into the majestic rotunda of the Russell Senate Office Building. Accompanied by a solitary guitarist, we sang along to that most radical piece of Americana, Woody Guthrie’s “This Land Is Your Land.”
When we were done, I called out for a mic check: “Mic check. Mic check.” The Capitol police encircled us and began closing in. “Can I get a mic check?
Mic check?
Mic check?
The mic check comes to us
From Zuccotti Park.
From a movement called
Occupy Wall Street.
And from a belief
That a better world is possible.
That greed is not good.
That corporations are not people.
That democracy is not
A spectator sport.
We are using a mic check today
Because we believe that it is time
For the voices of the American people
To be heard by the leaders
Of the American government.
We are using a mic check today
Because we believe that it is time
For the needs of the American people
To be addressed by the laws
Of the American state.
We are using a mic check today
Because we believe that it is time
For the American people
To take back our government
To preserve our democracy
To rebuild our economy
To save our planet.
The obstacles in our way
Are enormous.
Our opponents are so powerful.
They have the money.
They control the White House
And the courts
And the Congress.
But I believe
That we are more powerful.
Because on our side
Are the people.
Speaking alone,
My voice is weak.
But when we come together,
Our voices echo so loud.
Echo through the halls of Congress.
Echo out to those nine justices.
Echo up Pennsylvania Ave.
Echo all the way to Wall Street
And echo out
To every corner of this land.
Can you hear us, America?
We are here to fight
For this country
That we love.
That is why
We use a mic check.
And that is also why
We come together.
In the streets
In our houses of worship
In our community organizations
In our unions
On our campuses
In the halls of Congress
And at the voting booth.
We come together
Because we are stronger together
We are braver together
We are louder together.
We come together
Because when we do
Their money
Is no match
For our people power.
People power.
People power.
Power to the people.
CHAPTER FOUR
IN SEARCH OF PEACE
Rachael and I had moved to Santa Barbara in the summer of 2014. It was our very own slice of paradise. I loved working from home, pacing around the backyard and sitting on the deck, talking on the phone with coworkers for hours every day. She was proud to be teaching at a public university, where many students were the first in their families to go to college, and found fulfillment and pleasure in her research. My days started early, because of the time zone, which often left the late afternoons and evenings free for walks through the neighborhood or by the shoreline, delicious home-cooked dinners, and movies on our projector screen. We went to bed happy almost every night; we were living a great life, and we knew it. When Carl was born in the summer of 2016, we had everything we could ask for. Our world was complete.
Being diagnosed with ALS removed the ground from under our feet. It destroyed the stable life that Rachael and I had built. It washed away, with one enormous and unexpected wave, the decades of a future that we thought we would have together. Now I had only three to four years left to live. And most of those would be spent struggling with increasing levels of disability. The clock was ticking: I had only months or even weeks of solid physical health left. I therefore felt enormous pressure to enjoy the limited time that remained to me, to seize the days that I had rather than bemoan the days that I had lost.
But how could I enjoy life in the shadow of my shocking new tragedy? In the days and weeks after my diagnosis, an endless loop of outrage, anger, and disbelief ran through my mind. I had a visceral urge to rage against the disease—to be so angry that it would go away. But I quickly learned that the more time I spent thinking about ALS, the more miserable I was. If I could focus on something else just for a few minutes, the knot in my stomach began to dissipate. But directing my attention elsewhere was incredibly difficult. How could I train my mind to focus on something other than the disease?
I recognized that my predicament was not unique, only extreme: most people feel like there aren’t enough hours in the day; many also struggle with depression or a general proclivity to focus on bad or troubling facets of their lives. But I wanted a way out. So I looked for answers in meditation and Buddhist philosophy. A couple of weeks after my diagnosis I was cycling through a series of panic attacks, my mind swirling down rabbit holes of anger and distress. I picked up my phone and called a friend, Dash, for advice. I had been introduced to him by my college buddy Carlo; they had been in medical school together. At Carlo’s wedding on the pristine beaches of the Turks and Caicos Islands the previous year, Dash had told me about his dissertation on the use of meditation in the West and how he hoped to integrate it into his psychiatry practice. And then I tried to keep up with him as we led the wedding party on a boisterous run down the beach. Caribbean waters had a way of soothing the soul.
Dash picked up the phone immediately. Carlo had broken the news to him so I wouldn’t have to, and he was expecting my call. I paced around the room maniacally. I bemoaned my fate. I told him I didn’t know what to do. Suddenly I heard a loud bump. I turned around to see Baby Carl on the floor next to the sofa, screaming uncontrollably. Apparently he had learned to roll over and had tumbled off. I hung up with Dash immediately and threw myself into comforting Carl. The necessity of being a father had pulled me out of my mental spiral.
After Carl calmed down, Rachael and I decided to walk over to the home of her Kiwi colleague, Brian, for some Halloween pumpkin carving. I scarfed down the cured meat and cheeses that he laid out in front of me, but I couldn’t focus on the festivities. I walked out into the parking lot and called Dash back.
“I don’t know what’s wrong with me,” I told him. “I can’t focus on anything besides ALS.”
Dash told me not to be self-critical: “I know exactly what’s wrong with you,” he said. “You’ve just been given a horrible diagnosis.”
Okay, so I wasn’t to blame for my distress. But how could I escape it?
Dash asked me what, specifically, was upsetting me the most. I told him that I was overwhelmed thinking about the years and decades of wonderful moments with Carl that I was losing. This loss felt too enormous and overpowering to fathom. He asked me if I had lost those moments yet or if I was only distressed by the prospect of losing them in the future. I had lost nothing yet, I acknowledged. Nor was the future hurting me right now, we agreed. What was painful was thinking about the future. The pain went away when I redirected my attention from the future to the present. I needed to not guilt myself over the fact that I was distressed about the future; instead, he advised, I should acknowledge my distress and then let it pass.
“Think about your emotions like clouds in the sky,” he said. “Watch as they arrive, acknowledge them, and then let them pass.” The goal was not to repress my emotions or scold myself for having them; it was simply to see them, accept them, and then redirect my attention to the present. Because the present was filled with Cambozola and salami and pumpkins. The present was still good.
“Okay,” I told Dash, “I’ll go home and I’ll try to focus on something other than ALS for the rest of the evening.” He told me to pare back my ambitions. “Shoot for ten minutes instead,” he said. That would be accomplishment enough.
Dash also gave me a reading recommendation: Pema Chödrön’s When Things Fall Apart: Heart Advice for Difficult Times. The secret to dealing with pain and tragedy, Chödrön says, is not to escape or ignore these difficulties. Rather, it is to become comfortable and accepting of them. When the ground is pulled out from under your feet, she writes—when you find yourself in free fall—it is a mistake to flail wildly in search of a handhold; instead, you can find peace by accepting your velocity and the fundamental instability, unpredictability, and impermanence of our world. Everything falls apart. That is the nature of things. Enlightenment requires us to accept this anicca—this i
mpermanence—rather than rage against it.
A couple of weeks later a former coworker, Nisha Agarwal, reached out to tell me that she, too, had fallen on hard times. She had an incurable brain cancer. She told me that she was finding solace in her daily routine: in washing the dishes, walking in the park, staying in this moment. She recommended that I practice my mind control with the help of Jon Kabat-Zinn and sent me a link to his body scan meditation on YouTube. I lay on my bed with my phone on my chest, his soothing voice methodically guiding my awareness from my left foot up to my torso and head. In breath. Out breath. Holding my whole body in my awareness.
Meditation, Kabat-Zinn explained, was an opportunity to move out of the mode of doing and into the mode of being—to move away from our incessant desire to make things better and toward an acceptance of things just the way they are. Accepting the pain rather than running away from it. “As long as you are breathing,” his voice intoned, “there is more right with you than wrong.” I tried not to dwell on the fact that I would soon lose the strength to breathe.
Dash’s clouds, Pema’s weightlessness, and Jon’s mode of being became touchstones for me, helping me get through difficult hours and days. I wanted the techniques to solve my problems, make the sadness and the tragedy go away. But of course that was exactly the author’s point: the problems wouldn’t go away, my tragedy of ALS was not a joke and not a bad dream, and sadness was inevitable. The key to enjoying the time that I had left would be to accept life’s impermanence, accept the tragedy, and find comfort even when there was no ground under my feet.
The contradiction I had to reconcile, however, was that my career, my daily work at the Center for Popular Democracy, and my entire self-identity were built around what Kabat-Zinn described as the “mode of doing,” of molding the world to our wishes. Activism and politics were precisely about not accepting the tragedies of the world, about insisting that we could reduce pain and prolong life. Social justice meant creating a stable floor beneath our feet and then putting a safety net under that, to catch us if it suddenly vanished: universal health insurance, affordable housing, unemployment benefits (or, even better, a guaranteed good job) . . . Being part of a progressive political movement was precisely about fighting back and building toward a better future. Accepting was not part of our vocabulary.