Eyes to the Wind

by Ady Barkan

  Kavanaugh began his testimony doing his best impression of Al Pacino in Scarface, guns blazing furiously, self-righteous indignation erupting out of every pore. The Republican senators, reclaiming their time from the inadequately partisan prosecutor, followed Kavanaugh’s lead, decrying the witch hunt that they claimed was besmirching a good man’s reputation. Never before had the chasm between them and us seemed so wide to me. Never before had their immoral mendacity seemed so vivid.

  I rolled out of Harris’s office to shoot a video fund-raising for Senator Chuck Grassley’s future opponent, in the hope of tapping into the rage that progressives around the country were feeling toward the deeply offensive apologia for sexual violence that he was orchestrating. I exchanged words of solidarity and sympathy with Ai-jen Poo of the National Domestic Workers Alliance and Mary Kay Henry of the Service Employees International Union, two of the most important and respected labor leaders in the country. (Henry had provided crucial sustained support to Local Progress over the years.) My law school clinic partner Will, with whom I had spent so many late nights litigating on behalf of those Chinese kitchen workers, left his public defender office and brought along another classmate to say hi and assure me that Carl would grow up proud of his old man. (My tears came quickly.)

  And then, when the circus was over and the Hart Senate Office Building became quiet, my uncle Yochai arrived to take Nate and me out to an Indian restaurant for dinner. He was ten years younger than my father and twenty years older than I. When I was an infant in Boston, he had visited from Israel and promptly fallen in love with my babysitter, Deb. They’ve been married for over thirty years, and their origin story has always created a special relationship between the three of us. When I was a young child, Yochai and I bonded by wrestling; when I was in high school, we spent weekends on the phone, talking through the policy arguments that I would make in my next speech-and-debate tournament. He was a legal academic with stellar credentials (top of his class at Harvard Law, Supreme Court clerkship, etc.), a love for history and politics, and an incredibly rigorous analytical mind. When Rachael and I told him and Deb that we would celebrate ten years of partnership by getting married, I wept because it was their partnership, more than any other, that I hoped to emulate; his career, as a lawyer with a political conscience, that had been my first model and guide.

  Yochai and Nate sat with me in the restaurant, taking turns feeding me chicken makhani, saag paneer, and biryani. The moment was so heavy. Although the restaurant was nearly empty, its acoustics were bad and I was exhausted, so I needed my amplifier to be understood at all, even by these two men who had known me for so long. The Kavanaugh nomination seemed likely to pass out of committee the next morning, which left us despondent about the coming decades of American public policy. And my body was continuing its inexorable decline, leaving us despondent about the coming years for Rachael and Carl and me. After four days of arrests and speeches and chanting and scheming, I was spent: spent from putting a good face on a shitty situation; tired of inspiring others to hope when I had so little of it myself. And yet these past days had also been so filled with courage and sisterhood and solidarity; the ugliness of Donald Trump and Brett Kavanaugh had birthed so much beauty and love and power; my impending death, over this epic year and this tumultuous week, had brought me so much closer to so many people—had brought me so much respect and power, so much perspective and wisdom. I had been emptied and rejuvenated at the very same time; paralyzed and empowered by the very same disease.

  These interwoven dichotomies, I told Yochai and Nate—this beauty out of horror and tragedy embedded in triumph—this was the lived meaning of the word “poignancy.” Through my labored speech, I told them about Being Mortal: Medicine and What Matters in the End, Atul Gawande’s meditation on dying. The book had moved me for many reasons, including his powerful insight that poignancy is the simultaneous experiencing of beauty and tragedy, joy and sadness. When I watch Carl and Rachael tickle each other silly but cannot join in the fun; when I hear him ask her to teach him the alphabet night after night after night; when I see how much he enjoys goofing off with my male friends, and yearn to replace them just once; when I witness his charisma, at this early age, and know that it will blossom into a rare magnetism in the decades to come, and that I will not be here to cherish it—that is poignancy. The purpose of life is not the maximization of happiness and the minimization of pain, Atul and Paul Kalanithi conclude. Because the most meaningful moments, the most beautiful ones, the most important ones, the ones that shape our character and our worldview—the ones that we remember as our lives come to a close—these are sometimes moments of pure happiness but are, more often perhaps, moments of poignancy. Three times during that Indian dinner, contemplating our movement’s monumental battle against Kavanaugh and my personal battle against ALS, I broke down crying. Not quiet tears accompanied by smiles, but the full-bodied wailing that comes when I let my guard completely down and permit myself to be completely aware of the full scope of what Carl and Rachael and I are losing. Yochai held my head against his chest, as he had done countless times before, and I felt safe.

  That night, back at the Capitol Skyline Hotel, Nate and I had a decision to make: Should we wake up early and head to the airport for our return flight to California, or should we remain in the trenches as the Senate Judiciary Committee and then the full Senate voted on Kavanaugh’s nomination? We were so tired. We had done so much. There were many others doing the work. We decided to return home, to his sister and to Rachael and Carl, and to continue rallying the troops via social media. We turned off the lights. I listened to a few tracks from Bob Dylan’s Nashville Skyline and then I handed my phone to Nate to plug in.

  “Ben Wikler is texting you,” Nate said. “He says that word on Capitol Hill is that the vote is a total toss-up but that Murkowski, Flake, Collins, Donnelly, and Manchin are all going to vote as a block, and that they’re probably all going to follow Collins’s lead.” Nate and I digested the intel. Wikler had said we still had a chance to win and that Collins was the deciding vote. Over the past week, our fund-raiser for her opponent—which would only trigger should she choose to vote for Kavanaugh—had reached nearly $2 million. Many articles had been written about our fund, and I was prominent in stories about her vote. “Seems hard to leave if she’s the key vote,” Nate said. “She’s kinda your defensive assignment.”

  “Yeah,” I said, then extended the sports metaphor further: “Going home now would kind of be like walking off the court with two minutes left to play.” We’d push through our exhaustion, draw strength from the sisterhood that was leading the fight.

  In the morning we headed back to the Hart Building. The Senate Judiciary Committee hearing was scheduled for nine thirty. Jen Flynn had already dispatched the troops to ride up and down the elevators.

  “Okay, but what are we doing in them?” asked Ana Maria.

  “Bird-dogging,” said Jen—particularly the committee’s Republicans as they headed for the hearing room. Ana Maria knew how to do that. She was partnered randomly with a young first-time protester named Maria Gallagher. After riding with no luck for a while, Ana decided she should be a good role model for Maria, so instead of going to check email, she suggested they go wait outside Senator Flake’s office. About five minutes before the hearing was set to begin, as they were standing there in the hallway, along with a handful of reporters and videographers, they got a devastating alert on their phones: Flake had announced that he would vote in favor of the nomination, giving Kavanaugh just enough support to make it to the Senate floor. Only moments later, as if it had been scripted in Hollywood, they saw Senator Flake exit through a side door and walk briskly in the other direction toward the elevators. Ana Maria, Maria, and a coworker named Daniel immediately sprinted after the senator, reporters in tow, catching up to him just as he and his staffer entered the elevator.

  Daniel, approximately six-foot-six, already had his phone in hand and hit “record” immediately, c
apturing the whole scene clearly. Maria had the brilliant instinct to block the shiny golden door with her foot as it began to close. And Ana Maria, filled with adrenaline from the sprint; filled with two decades of experience using human stories to speak truth to power; filled with fury at the prospect that Kavanaugh might soon have jurisdiction over her queer immigrant radical family and the full breadth of this nation; filled with the pain of her own sexual assault and the pressure it had built up inside her for thirty years; filled with the unspeakable anguish that she had witnessed dozens of women nevertheless vocalize in recent days; filled with the knowledge that this kind of kismet was too precious to waste; filled with righteous anger that the man in front of her would dare perpetrate such an offense against the people of this country; and perhaps holding in her breast just the tiniest kernel of hope that she might still be able to shame him into behaving decently for once, Ana Maria bellowed out at Jeff Flake a plea:

  “On Monday, I stood in front of your office with Ady Barkan. I told the story of my sexual assault. I told it because I recognized in Dr. Ford’s story that she is telling the truth. What you are doing is allowing someone who actually violated a woman to sit on the Supreme Court. This is not tolerable. You have children in your family. Think about them. I have two children and cannot imagine that for the next fifty years they will have to have someone in the Supreme Court who has been accused of violating a young girl. What are you doing, sir?”

  Flake said nothing, and by now Maria had taken a crash course in bird-dogging. So she spoke up. “I was sexually assaulted and nobody believed me. I didn’t tell anyone, and you’re telling all women that they don’t matter, that they should just stay quiet, because if they tell you what happened to them you are going to ignore them.” She repeated her argument. He looked down at the floor. “Look at me when I’m talking to you,” she commanded, brilliantly inverting their power dynamic. She repeated her message a third time, fury pouring out louder each time. Flake was too ashamed to do anything but look at the floor again. “Don’t look away from me!”

  For five and a half grueling minutes this went on, with Flake trapped in the elevator, refusing to engage. CNN aired the confrontation live, and all the news channels showed it on endless repeat through the day because of the unbelievable events that unfolded next. After Flake finally extracted himself from the elevator, he went to the committee room and sat, stone-faced, as the chairman began the proceedings. A short while later Flake stood up, walked over to tap Democratic senator Chris Coons on the shoulder, and retreated with him to the privacy of a closed-door meeting room.

  Downstairs in the Hart Building atrium, activists were enthusiastically sharing the video of the elevator confrontation. After a while Ana appeared, to boisterous applause. She and I embraced and marveled together at the good fortune that would make Jeff Flake an even more captive audience of hers than he had been of mine on that plane nine long months before. “And maybe you’ll actually change his mind,” I said hopefully. Suddenly I realized she hadn’t yet heard the news. The hearing was on hold while Jeff Flake conferred privately with a handful of Democrats!

  By evening Flake had announced that he would demand a one-week investigation into the allegations against Kavanaugh, President Trump had ordered said investigation, Mitch McConnell had delayed the vote on his confirmation, Flake had acknowledged to CNN that Ana’s and Maria’s pleas—along with all the others from throughout the week—had moved him to change his perspective, Ana was the lead guest on Anderson Cooper’s prime-time show, and the entire progressive movement was brimming with hope that our efforts might pay off.

  After leaving the studio, Ana and her towering videographer Daniel came over to our suite at the Capitol Skyline Hotel, where Nate, Tracey, Aiyana, and I rewarded their heroic efforts with Thai delivery. Nate and Aiyana took turns shoveling noodles and eggplant and rice into my mouth with flimsy plastic utensils as we reflected upon the day’s amazing developments. It was, I told Ana, the single most impressive and important piece of activism I had ever witnessed. She had flipped his vote with her fury. Ana insisted that she was only one blade of straw sitting atop an enormous pile built by millions of women, with Christine Blasey Ford and Anita Hill at the very foundation. She had an early-morning appearance on network television, so we ended the festivities before midnight and said goodbye.

  The next day Nate and Aiyana and I finally flew home. Aiyana sat next to me, propping up my increasingly floppy head with a neck pillow, cushioning my seat with a blanket, distracting me from the pressure on my lower back with episodes of The Great British Baking Show, and calling Nate over to pull me up whenever I had slid too far. The two-to-one caregiver-patient ratio was luxurious.

  It was so good to be home. So good to watch Rachael build elaborate track courses for Carl’s magnetic wooden trains, to rest my nose on his curly head as we watched Daniel Tiger, to join them both for bedtime stories and hear him demand that Rachael then intone the nightly repertoire of “Twinkle, Twinkle, Little Star,” “Baa, Baa, Black Sheep,” “What a Wonderful World,” and “Somewhere over the Rainbow,” in that order. But being home also made vivid the reality that my disease was erecting new barriers between Carl and me as it continued its destructive work: Carl could no longer understand everything I said, and although he occasionally sought clarification, more often he just ignored me.

  The disease was also erecting new barriers between me and Rachael. Many parents of young children struggle to find the space and energy to maintain the relationship they had previously; the one-on-one time just gets eviscerated. My advancing ALS exacerbated that dynamic. Conversation became slow and required enough quiet for Rachael to hear me, which Carl did not always permit. That meant that our interactions were primarily logistical or, more often still, limited to my requesting and her providing care: “Could you wipe the sweat off my forehead?” “Sorry to interrupt, but could you please move my arm onto my armrest?” “Apologies, I know you just sat down [after two hours of caring for Carl], but I’ve been holding it in and really need to pee.” And anytime the three of us were alone, Rachael faced an intense one-to-two staffing ratio, taking care of both of us. Meanwhile, we watched with envy as most other parents in our social circle had a dramatically easier two-to-one or two-to-two ratio, permitting them a very different hour-by-hour experience of family time.

  In the fall, it simply became impossible for me to feed myself. The tray and the bib and the enlarged utensil handles had bought me time, but they couldn’t overcome my AWOL biceps. And despite her heroic efforts, there was no way for Rachael to feed me and herself while giving Carl enough attention to prevent a dump-the-plate declaration that dinner was over. In a bygone era, when Rachael and I talked about what it would be like to build a family together, dinnertime was particularly appealing: we both liked to cook and talk, and dreamt of a home where we could embrace that as a loving, nurturing routine. ALS made other arrangements for us. (Of course, few families can ever have peaceful dinners with toddlers, but we don’t have the luxury of looking forward.) Rather than hire an aide for dinnertime, I organized our friends to bring and eat a meal with us each weekday, which was a viable solution for the moment, although it further reduced our alone time.

  We moved my recliner back to the bedroom, and so, after feeding, bathing, and bedding Carl, Rachael would turn her attention to me. Clear a path for Ady to the bedroom. Push the recliner forward. Spread Ady’s legs. Place the walker in front of him. Lean him forward. Raise the wheelchair. Place his hands on the walker. And one-two-three: Push him up and forward onto his feet. Hold him while he gets his balance. Adjust walker location and his grip. Steer the wheelchair backward. Remove his sweater and T-shirt, head first, left arm, right arm. Put on his nightgown, left arm, right arm, and over the head. Pull his pants and underwear down. Now guide him to the edge of the recliner and . . . down . . . he . . . goes. Phew. Step one complete. Remove his shoes and socks and pants and underwear. Run the hot water. Soak his frigid feet in a
tub. Now make a protein shake so Ady can swallow five, ten, twelve pills, each one with deliberation and difficulty. Now wash his face. Now brush his teeth. Now, oh, what? Oh, he needs to pee. Get the urinal, move his hand, lift the nightgown, jam the little guy in there, wait, wait, wait, wait, wait, empty the urinal, rinse the urinal, lower his nightgown, move his hands. Blanket. Cell phone. Bottle of water. “What else do you need?” Oh, my God, now he tells me he needs to poop!

  ALS imposes such massive burdens that even a Herculean effort cannot bear its weight. Because, despite her diligence and loyalty and sacrifice, Rachael sometimes mistakenly took my shirt off using the Carl technique, which hurt my arms; she sometimes failed to plant my feet properly or lean me forward at just the right moment, which put me at risk of falling; she sometimes didn’t know that my progression meant that today we had to make a new adjustment. So I told her, sometimes with kindness and gratitude, sometimes with frustration and anger. One hundred times a day, Rachael performed a task for me, and if she was 90 perfect perfect, that meant that ten times every day her husband would tell her she was helping him incorrectly. And if 90 percent of the time Rachael performed those tasks with grace and no visible annoyance, that meant that ten times every day I felt like I was a burden and a pain in the neck.

  Finally we relented. My previous morning aide Laura put us in touch with a conscientious, loving, hardworking father of three named Robert, who quickly learned (and improved) our evening routine, giving Rachael an hour mainly to herself after Carl was put to bed. But then at night she was back in the hot seat, because my sleeping had worsened considerably in the fall. Six or ten or sometimes even fifteen times a night, I needed her to get up to replace my fallen blanket, help me pee, move my left arm, put on my ventilator, take off my ventilator, give me a drink of water, boost me up in my chair. We weren’t yet ready to hire or recruit overnight help, despite our couples counselor’s encouragement. So we muddled through, tired and sad, trying this adjustment and that sleeping pill. Trying to find joy despite the struggle, affection despite the exhaustion, hope in the dark.