by Ady Barkan
The theologian Reinhold Niebuhr—whose most famous disciple, Dr. Martin Luther King Jr., would become the patron saint of American organizers—sought to resolve this tension in his Serenity Prayer: asking for the serenity to accept what cannot be changed, the courage to change what can be, and the wisdom to know the difference. I tried to embrace this philosophy by living in two different mental worlds. When the Federal Reserve issued a bad decision, I embraced my outrage and worked with my comrades to craft a response to try to prevent it from happening again. But when ALS imposed on me a new symptom, I tried to be comfortable in my new reality, to accept my body as it was, not as I wanted it to be. My challenge—like that of everyone who has ever faced adversity or tried to create change—was in knowing what to resist and what to accept. Was it worth trying to slow down my ALS? Which experimental interventions were worthwhile and which would only cause more heartache? I didn’t know where to turn for the wisdom these questions required.
Rachael was grappling with these questions and others. When I looked years in the future, I saw Rachael and Carl living a beautiful life that I would not get to share. But when she looked in the same direction, she saw uncertainty. Would she and Carl be lonely? Would they be able to craft a happy life? While we were sitting on the sofa together one evening watching TV, I let out a robust plume of gas. “For my next husband, I’m definitely going to insist on no farts,” she said with a smile in her voice. I laughed but then started crying.
How quickly would my ALS progress? How many intense medical interventions would I want to keep me alive, and for how long, and what kinds of burdens would that impose on her? How miserable would life have to become before we decided to pull the plug? How old would she be when she was finally widowed, and what would her options be at that point? We talked about some of these questions but commiserated about others telepathically instead.
A month after my diagnosis, we invited all of our Santa Barbara friends over for an election night party. It was going to be a joyous occasion. A Hillary Clinton presidency would solidify the gains made under President Obama, finally establish a progressive majority on the Supreme Court, and repudiate the racism and misogyny of Donald Trump. Republicans would soon be cannibalizing themselves for their failure to nominate a more reasonable candidate and bemoaning their third straight presidential loss.
Crucially, a Clinton presidency would also help me find purpose in my final years. Over the course of the campaign I had built strong relationships with her policy team and pushed them to come out with a strong position on the Federal Reserve. In May, my efforts paid off when the campaign released a statement saying that Clinton believed it was high time for reforms that would make the Fed more accountable to the public and less beholden to Wall Street. I was eager to build off that statement and work with allies in Congress and the new administration to craft a comprehensive reform bill in the new year.
My father had flown in from New York, as had Shawn Sebastian, my deputy on the Fed Up campaign. Local friends started arriving in the early evening. One brought a Donald Trump piñata, which we hung from a tree on the back deck. Everyone who came had heard about my diagnosis, and it was my first time seeing some of them. Most people didn’t mention ALS, opting instead to give me a meaningful hug and talk about the election instead.
Folks spread out through the house, enjoying drinks and finger food. I was disappointed when the early results came in from Florida and North Carolina: there would be no landslide victory. Panic set in about an hour later when it became clear that the Midwest was favoring Trump as well. I bumped into my father in the hallway. We held each other’s arms and looked at each other, silent and bewildered.
I texted my contact in the Clinton campaign. I asked him whether there was a huge swath of votes yet to come in from Wayne County, Michigan, where Detroit should have delivered Clinton a major cushion. He had no inside knowledge and was refreshing the New York Times web page along with everyone else. By eight thirty p.m. in California, our hope had run out. “World turned upside down, first for me, then for everybody,” I texted him. “Not sure how to survive this . . . So many lives will be destroyed. I dunno. Maybe we move to India and find solace in a different universe . . .
“I’m gonna die under President Trump?” I asked him.
“I think you’re gonna beat the odds for a long time to come. We’ll fight again together another day yet,” he replied. I tried to believe him.
By then, all but a few people had trickled home. The Trump piñata hung undisturbed. Somebody opened a bottle of champagne and poured out glasses. We mumbled some words about fighting back, about resistance. It was good to be with close friends. But my world had already fallen apart, and I wasn’t sure how I would tolerate this second blow. With Donald Trump as president, neither change nor acceptance seemed possible.
A few days later Rachael and I packed up and took Carl on his first trip to the East Coast. She was scheduled to attend a weeklong workshop at the University of Virginia, and we figured there was no point in canceling just to stay home and sulk. It would also be a good opportunity to stay with two old friends from Yale Law School who now lived in Charlottesville. After we had put all the children to sleep, the four of us sat down for a calm dinner. Somebody mentioned the future, when the boys would all be older. I broke down instantaneously, weeping uncontrollably. Rachael came over to hug me, and Dan and Geri could do nothing but look on with pity. Later, sitting in the den, Dan told me that his sister had died of cancer in her early twenties. He had somehow managed to remain boisterous and playful. He and Geri opened up their songbooks, and we sang tunes by Dylan and the Grateful Dead. I reached for his guitar hopefully. But it was no use. My left fingers simply could not stretch or apply enough force to the strings. They were already noticeably weaker than when Dr. DaSilva had given me my diagnosis just five weeks earlier.
Ten days later we were up in Boston for Thanksgiving with the extended family. Everybody cooed over Baby Carl, and during dessert eleven people surrounded him and watched intently as he was fed pecan and cherry pie. When Rachael and I bundled him up to leave, the whole family stood in line to give us hugs and express their love.
Throughout the early weeks and months, most friends and family struggled to know what to say or ask. They were afraid to say the wrong thing. They didn’t want to bring up ALS if I preferred to talk about something else. At one particularly excruciating playdate with Rachael’s colleague and her family just after my diagnosis, we sat and made small talk for two hours without referencing the elephant in the room. I left feeling exhausted and infuriated. The pit in my stomach was the size of a watermelon, and nobody had offered to share its weight. Much more helpful was the approach taken by Henrietta and Anne, friends of my mother who were visiting from Holland. Five minutes after sitting down in our living room, they told us that they were terribly sorry about my disease and asked how we were holding up. “We don’t have to talk about it if you don’t want to,” Henrietta said, “but I don’t want to just pretend like nothing is wrong.” She said that her sister had died in her thirties after a long battle with illness, so she had some sense of what we were going through.
My aunt Deb was also familiar with this terrain. Over the years, she had treated hundreds of patients with pancreatic and colon cancer and had counseled their families through their shock and grief. On the phone with me in the early days, she had given me hope—not hope for a cure, or even the promise of a return to happiness, but the optimism that I would “make meaning” from my journey. Brad Lander, the New York city council member with whom I had built Local Progress, shared with me a similar sentiment: that if I spent my remaining days purposefully, I would “find peace.” These thoughts buoyed me in my darkest hours. They acknowledged the enormity of my personal tragedy while reminding me that I still had good reasons to live, important goals to pursue. “I know that you will guide us through this,” my stepmother had said in an early-morning phone call the day after my diagnosis. “
Just like you always do.” I appreciated the vote of confidence, and I wanted to make it true.
A few days after Thanksgiving, Rachael and I went to Massachusetts General Hospital to meet with Dr. Merit Cudkowicz, one of the leading ALS doctors in the country. Her last name is pronounced nothing like it looks, so everyone just calls her Dr. Merit. My aunt Deb had gotten the appointment for me. The neurology department waiting room was jam-packed with patients, most of whom were much older than me. Merit met us in a small examination room but didn’t do any examination. She had my records from Santa Barbara and Cedars-Sinai in Los Angeles, and felt no need to revisit the diagnosis. Instead she jumped right into a discussion of treatment options.
First was riluzole, which was the only drug approved by the FDA to treat ALS. That approval was based on studies that had shown that riluzole slowed down the progression of the disease slightly, extending life expectancy by a few months. Back in Santa Barbara, Dr. DaSilva had put me on a standard two-pill-a-day regimen; Merit suggested that I double my dose. Should I also take vitamin E, vitamin D, the coenzyme Q10, and alpha-lipoic acid, as a family member had recommended to me? Sure, she said. None of that would hurt and it might even help.
Next she suggested that I inject myself with an enormous quantity of vitamin B12. There was some evidence that this, too, slowed the progression of the disease. It wasn’t an FDA-approved treatment, so my insurance would not cover it. But for $300 a month I could get a compounding pharmacy in New Jersey to ship me refrigerated boxes of shots, which I could inject relatively painlessly into my butt. Merit failed to tell me that the most immediate and noticeable impact of the B12 shots would be to turn my urine bright red.
Merit continued to lay out a dizzying array of different potential treatment options, jotting them down on a blank sheet of paper. None of these had been proven to help, but there was reason to be optimistic about each of them. Masitinib was currently being sold in Europe to treat dog cancer; preliminary studies showed that it might also be effective against ALS. NP001 was being tested in a new clinical trial; I was welcome to enroll in it, either at Mass General or closer to home, at UC Irvine. Merit had recently completed a phase 2 trial of tirasemtiv, which had actually led to an increase in muscle strength among the patients who had been able to persevere through the intense nausea that the drug produced. One particularly exciting option was edaravone, a powerful antioxidant that was administered intravenously ten to fifteen days a month. It had been approved for ALS in Japan a couple years ago, and the company that manufactured it was waiting on approval from the FDA as well. But Merit knew a doctor in Tokyo who treated international patients, and she could put me in touch if I was interested. Finally, there was the promise of stem cell treatment. Taken either from the patient’s own bone marrow or a fetal line, these stem cells might either replace my dying motor neurons or help clean their environment so they could live longer. Merit had recently collaborated on a phase 2 trial with an Israeli company called BrainStorm Cell Therapeutics, and she hoped to soon begin a phase 3 trial as well.
I was bewildered by the scope of different options that she had described, and I didn’t even try to follow her simplified explanation of the mechanisms by which these drugs might treat my ALS. Rachael did a better job of keeping everything straight. Mainly I was surprised by how hopeful and proactive Merit seemed. Back in Los Angeles, Dr. Baloh had told me that there were no good treatment options; not even riluzole, which the FDA had approved, would do much to help me. By contrast, Merit told me to double my dose of riluzole and offered five to eight other possibilities that were worth exploring. Her assistant took a blood sample from me to see if I would qualify for the NP001 trial, and I headed out into the cold Boston rain with a new bounce in my step. That night, driving down I-95 to New York City with Rachael and Carl and my cousin, I turned up the volume on Mumford & Sons and drummed on the steering wheel as their banjo tap-danced off the walls. If each of these interventions slowed down the pace of my decline by 10 or 20 percent and those benefits were cumulative, then I could buy real time—maybe even enough time to live to see a cure.
A couple of nights later the excitement of our visit with Dr. Merit had worn off, but the permanence of ALS remained. I sat, nearly comatose with depression, in the living room of my father’s Upper West Side apartment with Rachael, my college buddy Carlo, and his wife, Dorothy, who was a child psychiatrist. Six weeks earlier, in a late night FaceTime consult, Dorothy had urged me to be gentle with myself, to permit myself to be distraught, infuriated, and dysfunctional. But now she took a different approach. It was time for me to get back to living. I needed to exercise the mind control that Pema Chödrön and Dash and Jon Kabat-Zinn had taught me. And I could start by focusing on concrete, physical tasks. I shouldn’t leave all the housework to Rachael, thinking I need not spend my remaining time doing dishes; instead I should see that work as an opportunity to focus on something other than myself, other than ALS.
Dorothy’s tough-love pep talk was a landmark for me. For seven weeks I had cycled through bouts of despair, insight, and meta-despair: despair at my diagnosis, insight about the need for mindful redirection, and meta-despair at my inability to fill that prescription. Dorothy told me it was time to end that cycle. Time to do what I knew needed to be done.
Halfway through dinner, Carlo noted that I suddenly seemed like my old healthy self: cracking vulgar jokes, asking insightful questions, and rudely telling people why their political opinions were wrong. I told him that his wife was a good doctor.
The following afternoon I jogged into Central Park with my stepmother, Pamela, and headed for the reservoir. There were many brown leaves on the ground and a few remaining in the trees; the paths were filled with righteous New Yorkers burning off their turkey and stuffing. My left foot was misbehaving, and I had to work hard to keep up even a moderate jog. After rounding the reservoir, we stopped on the north side to catch our breath and stretch. We looked down at the crisp skyline on Central Park South. We walked west. Squirrels scampered up and down the trees. The smell of roasted nuts wafted through the air.
“Thanks for the good run,” I said.
“Thank you,” Pamela replied.
Neither of us knew it would be my last one, ever.
In the weeks after my diagnosis, I asked myself a question that everyone struck by misfortune asks: “Why me”? My world had been overturned while all around me life proceeded apace. Among the various texts I turned to to help me process my new reality was When Breath Becomes Air, Paul Kalanithi’s beautiful meditation about dying from cancer at age thirty-six. In it, Paul wrote that the correct answer to the question “Why me?” is “Why not me?” And that certainly was a compelling and succinct response. But to me it was incomplete.
Many of my undergraduate classmates from Columbia went to work on Wall Street, executing schemes like the packaging and selling of fraudulent mortgage-backed securities that brought down the economy, costing millions of people their jobs and homes. Others became consultants to the oil and gas industry, which is destroying our planet and displacing millions of farmers and city dwellers from Brazil to Mali to Bangladesh. And they have been paid handsomely for their labor.
Likewise, most of my law school classmates—even at a place like Yale, which prides itself on its students’ commitment to public service—have gone on to work for fancy corporate law firms, where they help multinational companies lower their tax burdens (cue Paul Ryan saying we can’t afford to expand Medicaid for poor children because of the budget deficit) or eliminate the competition via mergers (watch as your cable company jacks up its rates for monopoly-sized profits) or advise major employers on how to develop “union avoidance strategies” (watch as Latino immigrants get fired for speaking up about health and safety conditions on the job, and American inequality skyrockets as unions lose their power to raise wages for working people). For their labors, my classmates have been earning hundreds of thousands of dollars a year; as they start making partner, in their m
id-thirties, it will be closer to a million.
(Of course, many of my schoolmates have used their training for incredible ends: Emily Washington is suing to improve conditions in the most horrendous prisons of the Deep South and protect civilians from police misconduct; Justin Cox works every day to prevent the deportation of children and parents back to countries where they will be impoverished and persecuted; Becca Heller rushed to John F. Kennedy International Airport and then into federal court to stop the Trump administration’s “Muslim ban”; Amanda Shanor helped Florida farmworkers win historic wage increases that have transformed their lives . . . The list goes on and on.)
I was no saint. No martyr. I was compensated generously for my work and derived psychological satisfaction from it. But I also dedicated my entire career to the public interest—to promoting justice and equity for people who deserved it and did not have it. In the past decade, I’ve helped improve the lives of millions of people by coauthoring the law that guaranteed paid sick days to all workers in New York City; by helping end the abuse of stop-and-frisk against millions of black and Latinx New Yorkers; and by moving the Federal Reserve to adopt policies that prioritize job creation and wage growth for the American public. And I thought I had forty more years ahead of me to try to do it again and again. I realize I might come across as a self-important blowhard for saying this, but I honestly think that my work is more valuable than that of many of the privileged elite with whom I studied. Is it offensive to say, therefore, that my life is more valuable, too? Offensive but, perhaps, accurate.