by Ady Barkan
In the two years before Carl was born, Rachael and I had delighted in taking weekend excursions to the nearby garden centers, from which we assembled our own collection of drought-resistant plants. I had spent half a dozen happy weekends digging up the grass in our front yard and replacing it with an elaborate mix of yuccas, agaves, echeverias, salvias, and an olive sapling for good measure. At Santa Barbara Stone, I loaded up the trunk of our Civic with large crimson sandstone tablets. I chiseled them into stepping-stones and arranged them into two pathways leading through the garden, blissfully unaware that the small succulents and ground covering that I placed nearby would completely conceal them within a couple years. Sweat dripping off my forehead, dirt coating my forearms, I took unadulterated pride and pleasure at this improvement of my land—a pleasure that was only enhanced by the refreshing shower and indulgent afternoon snacks that followed.
Now, walking with my father only eighteen months later, I was in no shape for gardening. On my left I wore a brace to help mitigate my foot drop. On my right I carried a hiking pole from REI that helped me keep my balance. I had fallen about a dozen times over the preceding year, doing varying degrees of damage. I planted the cane in sync with my left foot—every other step at times, or every fourth step if I was trying to move quickly. My father and I passed the local elementary school (cue the cloud overhead, asking if I would live to see Carl play in that yard, and watch that cloud pass by) and began to ascend a long hill. It wound left and then right; after a mile the sidewalk ended, and we walked in the street until we got to a dead end and a chain-link fence. This had been the turnaround point on my regular quick-and-easy 2.5-mile runs, which I had favored when I didn’t have the time or energy to drive to the shoreline for a more ambitious excursion. The climb had tired me out, but I told my father we should push ahead past the fence and into a hilltop park. I repeated our mantra: Do what you can, while you can. For the final ascent—a thirty-yard, very steep pitch—my father held my left hand and we marched up together, one deliberate step at a time.
At the top of the hill, we sat on a bench admiring the 180 degrees of Pacific blue beyond the golden surrounding hills. Catching our breath, we reflected on how much had changed since we had first started coming here only two years before. We both knew that this was the last time I would muster the strength to walk up to this plateau. The sun was setting on a gorgeous day, and on my life as well.
On the steep descent, my father grasped my arm with both hands, determined not to let me tumble down. There he was, a sixty-three-year-old man, watching his son’s body decay every month in front of his eyes.
On July 17, I got in our Civic and drove to the UCSB Children’s Center to pick Carl up. He was the biggest and oldest in his class of ten students, and I usually found him playing outside with various push-along toys or in the dirt patch that his teachers let him turn into a mud pit. He had started walking at ten months, in March. Now, four months later, he was gaining speed and confidence, while my walk was slowing down and becoming wobbly. I grabbed a plastic bag with his lunch and dirty clothes, picked him up, and walked out to the car. With Carl on my hip, I pressed the remote unlock button, opened the rear passenger door, and stepped off the curb to put him in his seat.
Suddenly I was falling backward, and then I was on the ground. My butt was sore and Carl was crying, but both my arms were wrapped around him, and I knew he hadn’t been injured. Two strangers walked up to help. One put Carl in his seat; the other helped me to my feet. I buckled him in and kissed him and told him we would drive home. Pulling out of the parking lot, I cried and cried, apologizing to him and bemoaning my lot in life.
At home, Rachael tried to comfort me, but she knew there was no good way to reduce the sting. Via text, a friend tried to commiserate by telling me that she, too, had once fallen while carrying her child. But the comparison was meaningless. I knew that this would be the last time I could carry Carl in my arms. ALS was destroying my ability to be a good father.
That summer marked the end of our attempt to return to a “normal” life like the one we had before my diagnosis. Within a few weeks of my fall, I no longer felt safe picking Carl up out of his crib or putting him onto his changing pad. As my left hand became weaker and weaker, and as Carl became more interested in performing impromptu backflips, Rachael took over 100 percent of the diaper changes as well. Every task that I could not do was one more task for her. I was in charge of bath time, until I could no longer safely pick Carl up out of the tub; we muddled through for a couple more months, Rachael putting him in and taking him out, until I could no longer get myself up off the floor without help, at which point I resigned myself to observer status. Sitting on a chair in the bathroom, teaching Carl the words to “Yellow Submarine” while Rachael washed and dried him, was certainly a version of fatherhood—but it was less than he deserved, and far less than I had planned to provide.
Rachael remained upbeat and hopeful. Yes, I was disabled. Yes, our lives were a bit harder. But she could pick up my slack. We had each other and we could, at least for now, make our days enjoyable. Focus on right now, she would remind me. Best to leave the future blurry.
That summer, Republicans in Congress tried to make good on their long-standing promise to repeal Obamacare. Across the country, countless activists showed up at the offices and town halls of their members of Congress, beseeching them not to gut the regulations that protect people with preexisting conditions or the funding that makes Medicaid available to millions of families. In Congress, the wheelchair-bound members of ADAPT, a disability rights organization, disrupted business as usual, occupying members’ offices and preventing hearings from proceeding. Time and again, Senate Majority Leader Mitch McConnell and House Speaker Paul Ryan announced that they had sufficient support to pass their legislation; time and again they delayed the vote when it became clear that their claims had been premature.
I watched the proceedings with trepidation and more than a little regret that I was not helping the resistance; it was particularly discordant for me to sit out a battle over health care. Instead, I continued working on Fed Up and Local Progress, the two projects that I had founded years earlier. My comrades and I had grappled with the question of whether and how to continue the work in the face of the new political landscape in Washington. Trump’s attacks—on Muslims and immigrants and health care and the environment and on and on—were fierce and unrelenting. We certainly understood and shared the desire to fight back. (Local Progress did help dozens of cities and counties around the country adopt “sanctuary” policies to protect immigrants, and local elected officials rushed to the airports along with activists on the day the Muslim ban was announced.) But we also knew that there was a cost to getting distracted. The American economy had become radically unequal in recent decades precisely because progressives had ignored the Federal Reserve and let the 1 percent write the rules. Municipal governments from coast to coast were dominated by corporate interests and machine politicians precisely because progressives had failed to do the organizing necessary to take power in the bluest parts of America. Fed Up and Local Progress were beginning to effectively address these needs, and Shawn and Sarah and I were loath to shift our attention away from them.
On Wednesday, July 26, I traveled to sweltering Austin, Texas, for the sixth annual Local Progress national convening. Tarsi Dunlop, Sarah, and the rest of the team had done all the work to prepare for a great conference; I had helped to plan a panel or two but had largely eased into my role as an éminence (prematurely) grise. I marched around the conference with my REI trekking pole, putting on a good face for the 150 local elected officials who had arrived from around the country. My voice cracked during my introduction of our keynote speaker, former congresswoman Donna Edwards—who had recently been diagnosed with multiple sclerosis, a cousin of ALS—but the gathering was mainly filled with hope.
But it also felt like a bit of a sideshow, because back in Washington, D.C., the Senate was finally about to pass a T
rumpcare bill that had already passed the House. On Friday night, after filling up on Texas barbecue and saying goodbye to my compatriots, I retired to my room, where I turned on C-Span. Republican senators Susan Collins and Lisa Murkowski had announced that they would not support the Republican bill, but we needed to find one more no vote. All eyes were on John McCain, who was now battling brain cancer after spending years battling the two men—Mitch McConnell and Donald Trump—who would benefit the most from his yes vote. Early in the morning, my screen glowing in the dark, I watched McCain stride onto the Senate floor and turn his thumb toward the ground. It was the latest in a series of unexpected last-minute victories that had preserved Obamacare. Supreme Court chief justice John Roberts had been the unlikely savior five years earlier; now it was McCain’s turn. The next morning, as we closed out the conference in Austin, our collection of activists and local elected officials were ebullient, suddenly optimistic that our national resistance might yet see us out of this dark era.
Three weeks later, it was time for my second major event of the year: the fourth annual Fed Up protest-cum-conference in Jackson Hole, Wyoming. Once again, others on the Fed Up team did all the heavy lifting, and I joined them there, with my cane and leg brace, mainly to be a pretty face.
This year the Federal Reserve symposium was infused with much more politics than it had been in a long time. Janet Yellen’s four-year term as chair was coming to an end, and everyone was speculating about whom Donald Trump would pick to be the next chair. We were hoping that Trump would nominate Yellen for another term, which would accord with tradition—each of the last three Fed chairs had been renominated by presidents of the opposite party (Ronald Reagan renominated Jimmy Carter’s pick of Paul Volcker, Bill Clinton and George W. Bush both renominated Reagan’s pick of Alan Greenspan, and Barack Obama renominated Bush’s pick of Ben Bernanke). Yellen indubitably deserved a second term. She had entered her chairship as the most qualified official ever to assume the post, and her four years had been wildly successful: the labor market had continuously gotten better, inflation was stable and low, and Yellen had made no blunders that spooked financial markets. Under any normal president, her renomination would have been a virtual certainty, not least because her successful stewardship of the economy would be incredibly helpful to the president’s reelection prospects.
But Donald Trump was no normal president, and neither tradition nor basic managerial principles nor even rational self-interest seemed to guide his decision-making process. As he would later tell Lou Dobbs, Trump—like a hyperactive mutt who pisses on every tree—was primarily interested in leaving his mark on the Fed. The rumored favorite was his chief economic adviser, Gary Cohn, the Wall Street banker. We weren’t sure what Cohn’s approach would be to monetary policy, but we were pretty confident that he would work hard to roll back regulations on the financial sector, putting the American economy at risk.
So we developed a strategy to oppose Cohn in the hope that if we defeated him, Trump might select Yellen instead. Recent news had been dominated by the white supremacy rally that had taken place in Charlottesville two weeks earlier, featuring Nazi flags and deadly violence. Trump had refused to condemn the event, saying instead—with Cohn standing right behind him—that there were some “very fine people” involved. Reporting indicated that the Jewish Cohn was unhappy with Trump’s comments, and we worked to drive a wedge between them. We issued press releases saying that if Cohn did not have enough integrity to criticize Trump’s tolerance of Nazis, then he would not make for an independent Fed chair. On Friday, just as we were preparing for our press conference, Cohn issued a statement saying that the Trump administration “can and must do better in consistently and unequivocally condemning” white supremacists, neo-Nazis, and the Ku Klux Klan. Our ploy had worked. Trump resented being criticized by his underling, and within a couple weeks Cohn was out of the running for Fed chair.
During our trip to Jackson Hole, I mainly played the role of senior adviser. I was proud to see the rest of the Fed Up team run an effective workshop for our members and a playful and smart press conference about the self-dealing and corruption inside the highest echelons of the Trump administration. I walked around the Jackson Lake Lodge gingerly, making small talk with Fed officials and reporters and accepting their warm wishes with a smile on my face.
The world, and my life, were so much worse than they had been twelve months before.
In September, Rachael and I dropped Carl off with his grandparents on the East Coast and flew to Italy for a ten-day vacation. My favorite cuisines were Italian and Indian, but our trip to Japan had set a high bar. I was eager to dig in. We began in Umbria, where a friend of Rachael’s mother let us use his vacation home. A local cook arrived to prepare our first dinner: runny scrambled eggs baked with shaved truffles; cacio e pepe pappardelle with more truffles; veal scallopini accompanied by aromatic eggplant Parmesan; rounded out by a rich tiramisu. We were off to a great start.
We spent five days traipsing around the scenic towns of Umbria. My legs were strong enough to carry me down the cobblestone streets of Spoleto and Gubbio, past the medieval stone buildings with their low doorways and colorful facades. But they were too weak for me to climb staircases with no handrail, so I waited in the plazas while Rachael visited inside the museums and palazzos. In the evenings, I ordered pasta for both my primi and secondi; since Rachael was kind enough to give me bites of hers, that meant I could try at least three varieties every meal.
Back at the villa, I sat at a desk overlooking the lush hillscape, opened my laptop, and began writing this memoir. Since shortly after my diagnosis, Rachael and I had talked about what I would leave behind for Carl, how he would get to know his father. I also wanted to leave something behind for the progressive movement: some lessons, some reflections, some strategies—something. But did I have a story or insights worth sharing? I didn’t know if anyone would want to publish my reflections, let alone read them. But Rachael told me to worry less about my audience and more about myself: the important question was whether I would enjoy writing. And there was only one way to find out.
The next morning we continued our tour. The cathedral at Orvieto was jarringly ornate. We sat with the other sightseers and admired the facade, overflowing with biblical narrative in bronze and gold and stone and glass. Inside, our eyes were pulled upward—past the black and white stripes of basalt and travertine, past the glowing semitranslucent alabaster and the colorful glass—to the heavens. In the chapel, we chuckled at the frescoes of fire and brimstone on the ceiling and then indulged in chocolate and pistachio gelato from the adjacent shop.
In Assisi, I struggled to walk up the hill to the magnificent basilica, built in the thirteenth century to honor the recently deceased, widely beloved Saint Francis. Step by slow step we went, letting all the other pilgrims overtake us. No, there was no elevator to the Upper Basilica, we were told. So I grabbed the wooden railing with both hands, pulling myself up the stairs glacially and sideways. Moments later, inside the nave, my droopy tired foot caught a small lip on the floor. Without the strength or coordination to adjust my footing, I went speeding down a wooden ramp, tumbling onto the smooth marble floor below. I had to calm the well-intentioned onlookers who rushed to quickly hoist me on my feet. After I caught my breath, we walked around the room carefully, admiring the frescoes depicting the life of Saint Francis, thinking about the centuries of pilgrims, both crippled and not, who had come before us. We tried desperately not to let the fall ruin our day, not to let my progression ruin our trip, not to let ALS ruin our lives.
In Rome, we took a golf cart tour of the city’s highlights; in an earlier life, visiting Mexico City and Edinburgh, Marrakech and Shanghai, Rachael and I had always walked as much as possible. Each stop was more crowded than I had remembered from my last visit fifteen years before. But the al dente spaghetti carbonara made me cry, the richly bitter cappuccino made me feel alive, and on our final evening, when we sliced into an enormous ball of bu
ffalo mozzarella and its milk came flowing out, I knew that I was spending my final years just right.
CHAPTER EIGHT
LIFTOFF
I spent most of November 2017 sitting in the living room in a $2,000 leather power recliner that my father and I had recently bought so that I could breathe more easily while I slept propped up. My supervisors at the Center for Popular Democracy had happily granted my request to take the last two months of the year off in order to make progress on my memoir. But then I discovered the ten-minute matches on Chess.com and indulgently lost myself for the entire month in international competition against similarly mediocre players. I would begin to play when Rachael retired to the bedroom around nine thirty, and then, suddenly realizing it was three a.m., I understood why all of my opponents were from India. By Thanksgiving, I had developed proficiency with the Scotch opening, thrusting both of my center pawns into the middle of the board and hopefully ending up, five moves later, up a pawn or dominating the center with my queen. But by then I had also sated my appetite for hedonistic frivolity; it was time to get back to work.
But I could not focus on my writing. It seemed irresponsible to reminisce about the simpler times of years past while Donald Trump and his Republican Party were burning down Washington, D.C. I had largely avoided resistance work over the past year, opting to keep my focus on the Federal Reserve and municipal policy making, but I could avoid it no longer. The stakes for our country were too high and my time remaining was too short; if I wanted to contribute to the defense of American democracy, then I had to join the battle that was raging. “This is our moment in history,” Senator Elizabeth Warren said in a video that I had produced with Local Progress earlier in the year. “Not the moment we wanted, but the moment we are called to.” I decided to take her advice.