by Ady Barkan
I talked it over with Nate and Aiyana. We decided we were too tired, and home was too comfortable, to return to D.C. for the Kavanaugh denouement; East Coasters would have to carry the load.
Within days it became clear that the Trump White House was severely limiting the scope and depth of the FBI investigation and, even more consequentially, that Senators Flake and Collins were interested only in the appearance of open-mindedness, not the thing itself. On the day that Susan Collins delivered a speech filled with partisan talking points to justify her vote in favor of the nominee, thousands of enraged people donated to our fund for her future opponent, raising over $1 million. It was the most depressing grand slam I ever hit. Brett Kavanaugh was confirmed, and I fear he will still be doing damage to America and its people when Carl is my age.
In the final weeks before the midterm elections, I watched as my coworkers from the Center for Popular Democracy volunteered on campaigns around the country and Liz coordinated with various Democratic political action committees to use my story and our footage in their closing arguments to voters. We partnered on major media buys in four swing House races, winning them all, and other groups ran online ads with the Be a Hero message in one hundred districts. I published a magazine article and tweets urging progressives to volunteer as much as possible, but my work on the midterms was largely complete. I just had to wait for the results.
In the early afternoon the day before Halloween, Aiyana and I sat in the sunny dining room and shared lunch with Jia-Ching, a Santa Barbara friend who we had met through Carl. We got to talking about our plans for the holiday, and Aiyana said she would be doing a personal ritual at home. That piqued my interest and led to the revelation that she self-identifies as a witch. Aiyana explained that witchcraft and the casting of spells was about getting in touch with her desires and wishes—for herself, for others, for the world. It was a way of working intentionally at the intersection of the personal and the divine for a higher purpose; of identifying and vocalizing gratitude, sadness, fear, hope. It was prayer, not so different from the prayer that Nate had shared with me in the RV on that quiet night. Not so different from the type of self-aware mindfulness that had gotten me through those early months.
“What about you, Ady?” Jia-Ching asked. “Where do you find your spirituality and your deeper truths?” I thought for a while, and then started to cry. The election was a week away. Democracy, I realized. That was where I found my first principles. The notion that we should order our world based on decisions that we make together; that our fate as individuals is tied inexorably to the fate of others; that political struggle is timeless, essential, and liberating. This, I realized, was my religious conviction. This was my secular faith. As I struggled to convey my answer to Aiyana and Jia-Ching intelligibly, I realized how much of my life and how many of my choices this answer explained. More than anything else, I had spent my career in pursuit of a more just and equitable democracy, because, I understood now, it was what I believed in most deeply.
A few days after the election, Rachael got our winter coats out of the closet, packed up my urinal and Carl’s beloved stuffed bear, Bear, and all our other essentials, and drove us to LAX. Nate met us at short-term parking and we wound our way past security, past the Christmas displays, and all the way to New York. It was frigid waiting in the partially covered line at JFK for a wheelchair-accessible van and the capacious potholes on the Brooklyn–Queens Expressway were no fun for my ever-weaker neck, but we soaked my feet in hot water when we got to my father’s apartment and I started to feel better. Dinner was delivered: the Szechuan dumplings were soft and slippery and the curry lamb set my mouth ablaze, and I was glad to be back.
Up at Yale Law School, in the beautiful crisp air that had enveloped so much of our East Coast decade together, Rachael and I returned to the embraces of old professors and classmates. Mike Wishnie, my clinical professor, regaled me with stories about the field of veterans’ law, which he and his students were literally renovating by forcing the courts and the Veterans Administration to finally respect the rights of vets to medical care, significant financial support, and other services.
To an overcapacity auditorium of students, my old comrade from the access-to-medicine movement, Amy Kapczynski, showed two short videos about my career on an enormous projection screen. Carl sat on his knees in the front row, leaning forward on his arms, captivated by the images of himself and his parents above him. Rachael sat next to him, crying, because the video of my time at Fed Up showed a vibrant man with a quick tongue whose hands punctuated every sentence—not the shriveled, motionless husband who now sat, head askew and mouth agape, twenty feet in front of her.
After Amy’s introduction, it was time for my lecture (our ostensible reason for returning to the school): “Resistance and Power: Reflections on 2018 and Where the Progressive Movement Goes from Here.” My voice was too weak to deliver it myself, so my schoolmate Amanda Shanor—whose tardy arrival at the Capitol Skyline Hotel and reckless driving to DCA had a year earlier delivered me to the boarding line just in time to overhear and meet Liz Jaff—read it for me. After twenty years of delivering my own impassioned and self-righteous orations, it was time to rely on the cadence and pitch and timbre of others. By delivering the House of Representatives to the Democrats, I argued in Amanda’s voice, the previous week’s election had stopped America’s slide toward fascism. But if we were going to build a country we could be proud of, we had much hard work ahead of us.
During the question-and-answer section, one woman asked about our special privilege as Yale Law School students, and just how random our luck seemed to be, in a world filled with refugees and war and infant mortality. “I would encourage you to hold on to that discomfort,” answered Muneer Ahmad, the gentle professor who had supervised my work with the Chinese cooks. “Let that discomfort drive you to do good work.” One final question came from a student worried that in such a big bad world, our individual efforts could do little good. With Nate sitting by my side and translating each sentence, I tried to give her reason for hope, promising that if she worked her butt off, she would have a life-altering impact for her clients, would be part of a broader movement that would save the world from fascism and climate change, and would through her struggle find personal liberation and fulfillment in the knowledge that she had done her best.
Later that evening, driving back to New York City, Rachael and I, always aware of the loud rapid ticking of the clock above my shoulder, dared to confide in one another: in a different life, it’d be a pretty sweet gig for me to go back to that vibrant school and teach advocacy to the next generation of activist lawyers. We heard that there was a good English department there as well.
For the annual benefit celebration for Make the Road New York two days later, where I was presented with an award, I had dictated a speech reflecting on my time at the organization and the lessons it had offered me. I asked two of our movement’s brightest lights, Ana Maria Archila and Congresswoman-elect Alexandria Ocasio-Cortez, to read it for me, in both Spanish and English. Alex did me the honor of flying up from her congressional orientation just for the occasion, and was welcomed like a conquering hero by hundreds of New York progressives giddy about their newfound power in Albany and Washington, D.C.
I ended the trip by convening some of the best organizers I had ever worked with for a full-day meeting reflecting on our first two years of resistance and scheming about the years and decades to follow. Where had we succeeded and where had we failed and what kind of a movement would we have to build to get where we wanted to go? Each participant took away their own insights. I, for one, decided that if I had ten more years to spend, I would try to help rebuild the American labor movement. It is hard to picture the left winning sustained power if we don’t have organized workers at the vanguard of our struggle. But, sitting in a big circle in the picturesque Picnic House in Prospect Park, surrounded by three dozen people who had shaped my worldview and identity, looking out over the peacef
ul fresh snow and barren trees, I tried to focus on the beauty of the solidarity that we had for one another, rather than dwell on the question of how many more such meetings I would ever attend.
And then it was time to go home. Time to enjoy cranberry sauce and creamed leeks and mashed sweet potatoes and to struggle with each delicious bite of turkey and Brussels sprouts. Time to purchase gifts and watch Aiyana wrap them. Time to take Carl to pick out a tree and then tell him over and over again not to pull the ornaments off it. Time to watch some best-picture contenders. Time to sit in my wheelchair and look out the window as the rainy season finally descends upon Santa Barbara, covering my succulents with a cool coat of water, and reflect upon this vivid and poignant year. Time to widen my lens and look back a bit further, to finish my memoir about this vivid and poignant decade and about the decades to come.
EPILOGUE
It is December 31, 2018, and I am sitting in my bedroom. There is phlegm stuck in my throat because I do not have the strength to clear it. I have been coughing incessantly for the past few weeks, and it has gotten worse today, perhaps because we lit a smoky fire in the fireplace, or perhaps because I’ve been hitting my pipe a lot this week. I feel particularly short of breath, perhaps for the same reasons and perhaps because I have ALS and my diaphragm is disintegrating. Over the past month I have lost the strength to take even one step, which means that transferring me from my wheelchair into my recliner and back has become more complicated, although Rachael and Mario and Robert are finding workable solutions. My left arm is completely useless, and I need to use my right hand to move it—or, more often each week, I need to ask someone else to move it. My right hand is also withering away, and so it has begun to be difficult to steer and adjust my wheelchair. I filled out an online questionnaire the other day that concluded that my ALS is progressing faster than that of 75 percent of my peers, which is a meaningful change from a year ago, when I was in the 50th percentile.
But all of these symptoms pale in comparison to the loss of my voice, which has been happening for eighteen months and is now reaching its conclusion. If my friends pay close attention, think proactively about context, and ask me to repeat myself, then we can usually reach mutual comprehension—although not in the evening, when I am weary. My parents and others of their generation have an even harder time, because their hearing is on the decline. Carl can sometimes understand me, but only if he pays close attention (and he is a toddler, so patience is not his strong suit). If I’m lucky, he will care enough about what I have to say to ask Rachael “What bid Abba said?” Usually, however, Rachael is more proactive and simply translates my mumbles unsolicited. Only she and Aiyana and Nate can understand more than 50 percent of what I say without asking me to repeat myself. Right now I am wearing my amplifier so that Aiyana, who is four feet away, can make out what I am saying and take down these words. I believe that I am entering my final weeks of speech.
If the year were 2011 or earlier, I think that this state of affairs would make me suicidal. Indeed, I think that I would have spent much of the past year in a deep depression, unable to do the things or think the thoughts that have given me so much hope and joy this year. The inability to communicate would have been too debilitating, too isolating, too inhuman to tolerate.
But the miracles of science have in the past seven years intervened to save me from that dark end, at least for now. Attached to my wheelchair is a steel arm, and mounted on the arm is a Microsoft tablet computer, and secured to the bottom of the tablet is a thin seven-inch-long device called the EyeMobile Plus that uses infrared light to track precisely the location of my pupils. The device tracks exactly where I am looking on the screen, permitting me to use a cursor, type on a keyboard, scroll, double-click, zoom in and out, and, if I’m lucky, highlight blocks of text. The tablet came installed with very good artificial intelligence software that is learning to predict my vocabulary and diction and, with the help of a strong speaker and a synthetic voice, allows me to vocalize the words that I write with my eyes. Eighteen months ago I recorded myself reading thousands of sentences, and a nonprofit organization recently took that data and created a digital voice made to sound like a healthy me. But I recoil at its slow cadence and imperfect mimicry: it suffers from an audio version of the uncanny valley. I prefer to use the voice named “Microsoft David Desktop—English (United States),” or sometimes “Saul” or “Rosa” if I’m in a good mood. Rachael doesn’t like Saul. But he sounds pretty crazy, and I wonder if Carl would get a kick out of him.
It is an exceptionally slow way to communicate, perhaps one-twentieth or one-fiftieth the pace that I used to talk or type. The software is buggy and finicky and I often need able-fingered people to help me. But the difference between frustratingly slow and nothing is everything.
The technology works in the dark, and we have a second arm that fits over my recliner, which means that even while Rachael is sleeping, I have the entire breadth of human knowledge at my pupil-tips. I need not strain to imagine myself one year from today, sitting in my recliner, hooked up to a ventilator that is breathing for me and a gastrointestinal tube that is feeding and hydrating me and a third tube taking care of my outputs, seamlessly gliding to every corner of the Internet to explore an infinite supply of film and music, poetry and prose, history and news, cooking shows and cat videos. It is not the life I had planned for myself, but to be honest, it doesn’t sound so bad.
An American company recently announced plans to offer an interface that will even allow me to drive my wheelchair with my eyes, opening up a whole different world for me to explore. I cannot imagine a better place to live an infirm life than Santa Barbara, California. I have lost so much, and yet I still have so much for which to be grateful.
But this lifesaving miracle depends on one poorly understood quirk of ALS, which is that the motor neurons controlling the eyeballs do not die at nearly the pace of all their cousins. Even with my above-average pace of decline, I may well have many years of functional eye movement left. But I may not. From what I understand, the eyeball motor neurons eventually die off as well. I have not yet felt any decline in the speed or accuracy with which I move my eyes. But the day I do, there will be a pit the size of a watermelon in my belly, and I will know that my end is near.
But I am here now; tomorrow begins a new year. And I need to decide how I’m going to spend it. Democrats have won control of the House of Representatives, which will hopefully stop the slide toward American fascism. A legion of Democratic politicians is competing for their party’s presidential nomination, and doing so primarily by trying to prove their progressive bona fides. A movement of brilliant young people has laid out a vision for a Green New Deal, including a job guarantee, that can save our planet and end poverty in America, and they are moving it into the center of our nation’s political discourse with astounding speed. Tomorrow, I will email my editor a link to the first draft of my memoir manuscript. The work that I set out to do this past year is largely complete.
There is, for the first time in my memory, a blank page in front of me. My implements for making marks upon that page are both more powerful and radically more feeble than the implements I possessed on New Year’s Day three years ago. And, most important of all, there is now a new author by my side. His vocabulary is growing every week, as is his love for crayons and finger painting. There is a stack of white paper in front of him, which I expect will take him many decades to fill. But he has already begun to write and paint, and one hundred times every day I despair at my inability to help him lift a pencil, to compliment him on his doodle, to help him depict in full color the richness of his life. One hundred times every day I despair at my inability to tickle and chase him, to help him build towers and train tracks, to bellow and head bang alongside him, to make messes together and then clean them up, to read stories and tell jokes, to comfort him in the middle of the night, and to scold him when he dumps his dinner plate for the fifth night in a row. And these are only the pages on which he i
s making marks right now. I cannot bear to imagine in detail the many pages that he will fill in the future, because their beauty is so overwhelming that merely glancing at their edges, stacked one on top of another, makes me sob.
Carl will soon get to the age at which he will begin making lifelong memories. I want to be there with him when he does. And, sitting in my wheelchair today, I can soothe my wrenching soul with the knowledge that modern science and ancient human solidarity will likely make that possible. This year I have depended upon a large assembly of comrades in order to do the political work that has allowed me to make meaning out of my premature death. Next year I hope to enlist a smaller yet equally potent flock to help me build a deep relationship with my son that will outlast my earthly body. Rather than focusing on the single blank page in front of me, I plan to set my eyes upon his creations. That will yield a different kind of meaning, a different kind of legacy.
Every day since my diagnosis, I have struggled to know what to accept and what to resist. The Buddhist philosophers who got me through those devastating first months taught me to leave the mode of doing and enter the mode of being—to accept things as they are, rather than yearning for them to be otherwise.
Such radical acceptance is in tension with my identity as a movement builder. Activism is precisely about not accepting the tragedies of this world but rather insisting that we can reduce pain and prolong life. Social justice means creating a stable floor beneath our feet and then putting a safety net under that, to catch us if it suddenly vanishes: universal health insurance, affordable housing, a guaranteed good job. Being part of a progressive political movement is about fighting back and building toward a better future. “Acceptance” is not part of our vocabulary.