by Ady Barkan
Like it has a thousand times before, the cannabis is relaxing my muscles and sharpening my analysis. And like an astronomer gazing at the constellations above, I can now draw connections that give meaning to my day, uncovering the truths that have been hiding in plain sight. I begin to write an essay, or perhaps a speech, in my mind. My fingers will not let me jot down notes on paper or my phone, so I must try to remember my drug-induced insights until the morning.
In nearly every congressional district, voters tell me that their top concern is health care. The high cost, the lack of access, the bureaucratic headaches—I hear these complaints in small towns, big cities, and suburbs from coast to coast. But these complaints, I realize, are symptomatic of a much more profound problem: our democracy is broken, and it seems that we have lost the ability to solve our collective challenges. Everywhere we go, we are meeting voters who have been disabused of the notion that our elected representatives are pursuing the public good, disabused of the quaint idea that our government is of the people, by the people, and for the people.
And yet, throughout our travels, this cynicism is being overcome by a different emotion. Hope. All around the country, we are meeting people who can see beyond this dark moment into the bright light of another world. For the first time in many decades, our national politics are being shaped not only by fear and hatred but also by our dreams for a better world. Each month more organizers, activists, candidates, and elected officials are talking about reshaping American society in a radically humane way. This vision encompasses both negative and positive rights: freedom from unjust incarceration, racist policing, inhumane immigration enforcement, economic exploitation, sexual violence, and political disenfranchisement; and a set of public policies that gives us the freedom to thrive—debt-free education from pre-K through college, decent housing, the guarantee of a good job, clean energy, resilient and sustainable cities to call home, retirement security, and free and robust Medicare for all.
Focusing on the moment and immersing myself in the task at hand has been my salvation over the past two years. Peering into the future has been too dispiriting and too overwhelming. But there is so much to embrace in this very moment—so much work right here in front of us.
This is the message that I settled on somewhere between the cornfields of the Great Plains and the glistening waters of the Great Lakes: the notion that the cure to what ails American democracy is more American democracy; that our problems are created by people and that we can solve them only with people power; and that, as Rebecca Solnit teaches us, hope is not a lottery ticket that can deliver us out of despair, but a hammer for us to use in this national emergency—to break the glass, sound the alarm, and sprint into action.
What action? Voting is not nearly enough. This moment calls on us all to become organizers. To be heroes for our communities and future generations. To talk to our less political friends, neighbors, classmates, and coworkers and to enlist them in this experiment we call American democracy. This is our Congress, our country, and our future for the making.
I stretch out my right hand and place my thumb on my iPhone’s home button. With deliberation, I push down. Three thirty-eight a.m. Nate will be awake in less than three hours. I need at least a little sleep. I try to secure my musings in a safe container so I can retrieve them tomorrow, but I must shut the lid so that they will not keep me awake any longer. We’ll see what remains when I return, but for now I must close my mind.
Midnight, July 28, 2018
River Forest Park Campground, outside of Weedsport, New York
For the final time on this trip, we are in the country and I can smell the fields of grass. We blasted Sinatra and Jay-Z as we drove into the campground at sunset, although this was not the New York that those men had in mind when they were writing their paeans. In the evening, our bellies still sated from the Puerto Rican mofongo we ate for lunch, our entire fourteen-person entourage crammed into our RV. Our boss, Jen Epps-Addison, rolled two enormous blunts, somebody turned on the speaker, and we were off to the races.
Nate had tried to stop me from bringing my box of weed on the trip, not because he doesn’t love the sticky icky, but because he’s a pansy who’s afraid of breaking the rules. I tried to explain to him that if the police arrested a man dying of ALS for possessing marijuana, it would be the best publicity we could ever wish for. He was unmoved, so I had to get our vegan cinematographer to sneak the goods out of Santa Barbara for me. It was a very wise decision.
Tonight, however, I had trouble inhaling enough smoke to get high. It’s already been a year since my hands were strong enough to light my own pipe, but now my diaphragm is creating new problems. Edibles are too hard to dose, and there is no fun in their delayed gratification. Only a mouthful of smoke can make me grin from ear to ear.
Midmorning, August 2, 2018
Capitol Skyline Hotel, Washington, D.C.
The last four days have been a whirlwind.
On Monday morning, as the sun danced its way through the trees onto stone Quaker houses and the fierce smell of sploshing wastewater wafted through the RV into our sleepy noses, Nate and I took picturesque winding roads out of the Pennsylvania forests into the urban political machine of Trenton, New Jersey, where I joined the state’s congressional representatives, its indicted senior senator, and a small battalion of political reporters in an ornate Capitol conference room to celebrate the anniversary of Medicare and Medicaid and warn the public about the dangers of continued Republican governance.
On Tuesday, snarled in Philadelphia’s downtown rush-hour traffic and horrified at the prospect of keeping my heroes waiting long, I asked Liz to pull over, rolled out of the Big Red Truck, and zoomed recklessly down the crowded sidewalks toward City Hall, my homie Jeremy—on the last of his 3,000 days living in Philly—gleefully running by my side and a portly stringer cinematographer, further weighed down by his heavy equipment, struggling to keep pace. We wove our way past the hundred people who stood outside angrily digesting the news that our event was at capacity, but then waited an interminable fifteen minutes more to be given a security sticker and access to the elevator. When we arrived, the grand room was comically overflowing, with young radicals filling every square foot. We were there to celebrate and scheme about the revolutionary experiment being conducted by the City of Brotherly Love to unwind its system of mass incarceration. The activists Larry Krasner and Helen Gym had seized the reins of governmental power and were now the city’s district attorney and council member at large, respectively. (Helen is also the vice chair of Local Progress.) They were letting people out of jail, refusing to prosecute, decriminalizing, investing in enrichment rather than pipelines to prison, and doing it all with a robust social movement by their side—a movement that was filling the room we were in. Sitting next to them was Shaun King, a journalist-activist who is trying to take the Philadelphia model national by helping to elect Krasnerite prosecutors wherever possible. For an hour we bantered and mused, basking in the warm confidence that despite Donald Trump’s best efforts, the movement for real justice will transform this country. Not soon enough, but soon.
Wednesday morning, we woke up in D.C. and headed for the west side of the Capitol, where the city’s institutional left was holding a Stop Kavanaugh rally. It was dispiritingly small. My friend Ben Wikler was emceeing, doing his best to keep the energy high despite the sense—my sense, at least—that if we could bring no more than two hundred people out for a rally, we were bound to lose this fight. I was slotted to speak near the end, so I bided my time in the shade of a tree fifty yards away. And then, from the direction of the House office buildings, we saw our reinforcements marching and chanting with a fierce new enthusiasm. Jen Flynn had brought her bird dog army and they were all wearing Be a Hero T-shirts. They climbed over walls, stared down the Capitol Police, doubled the size of our gathering, and stood behind me as I took the stage. Suddenly we had some hope. Then into the Senate we went, disturbing their quiet August workday and laying d
own a marker, an opening salvo promising that this nomination would not proceed smoothly. “Kavanaugh’s disgusting, and that’s why we’re disrupting!” I could no longer speak quickly enough to lead chants, but I could still come up with a good one and could still enjoy a couple of hours in lockup with my comrades.
It’s Thursday now, and I’m going to meet with Senator Elizabeth Warren in a couple of hours. I’m going to urge her to run for president and offer my support. I wonder what she’ll say.
Late night, August 2, 2018
Capitol Skyline Hotel, Washington, D.C.
A second lightning bolt from the sky. But this time the shock is familiar, the burn is less intense, and the pain affirms our knowledge that the world is cruel. Nate and I are sitting in our usual room at our usual hotel, in the city where so much of this tumultuous momentous righteous year has played out for us. And he calmly tells me that he just received a phone call from home informing him that his twenty-nine-year-old sister has blurry vision and the ophthalmologist thinks he sees cancerous lesions behind her pupils.
In my mind’s eye, I look out to the horizon and a long, smooth, bright path ahead crumbles, replaced by a much shorter one with potholes, detritus, detours, and then nothing. There are still tests to be run, medicines to try, battles to fight. But I have the immediate sense that I know how this story ends.
Nate moves into triage mode, finding a replacement for the final week of RV driving, enlisting my parents to come take care of me, booking flights, and telling his girlfriend that there will be no relaxing return road trip back to California. He’s coming home pronto.
Jesus and his disciples were tortured and killed for their faith, Nate tells me. His Christianity does not promise him wealth or health or happiness. He is promised pain. And salvation. We were pimply saplings in Algebra 2. But our bark has grown thick and our roots now run deep. We are both steady in this storm, leaning against each other, waiting and expecting to soon be felled. This trip will not end in joyous celebration. Nate will not move out to Santa Barbara in September. We’re carrying a heavy load. A bit run-down here at the moment. So we’ll set our eyes to the wind. Rattling the whole way home.
Dinner, August 7, 2018
The Bronx, New York
A hot summer rain has drenched the city’s streets, but we are safe inside a Caribbean restaurant and are in high spirits. Rachael and Carl have rejoined our tour for its final stretch, which feels like a real homecoming. We’ve just met the political world’s rookie of the year and she is even more brilliant and bold and generous than advertised. Even my father has put away his cynicism and fallen for Alexandria Ocasio-Cortez, the twenty-nine-year-old radical who will soon be the congresswoman representing my old Astoria hood and this cantina.
I was just the guest of honor at Alex’s first community town hall. In a sweltering church auditorium overflowing with New York lefties, she and I sat listening to a string of labor leaders describe their struggles du jour before taking the mic ourselves and urging the audience to pour their labor into these final three months of campaigning. Alex is warm and earnest with everyone she meets; she brings an organizer’s perspective to the work, along with the crazy hope that we might build a different world. I can’t wait to see what she does in Congress.
Yesterday was equally exciting. City Council member Brad Lander and I organized a pep rally in his Brooklyn brownstone neighborhood featuring the Working Families Party’s insurgent candidates for governor and lieutenant governor. None of us think that Cynthia Nixon will defeat Governor Andrew Cuomo in the upcoming Democratic primary, although we have some hope that Jumaane Williams may prevail in his race. But the real prize is the state senate, where a crew of pretend Democrats have for many years partnered with Republicans to stymie progressive priorities. If we can defeat them in the primary, we can effect a political revolution in the state, finally aligning public policy with the preferences of the people of New York, making big progress on voting rights and campaign finance reform, reproductive health care, criminal justice policy, and tenants rights. Winning the state senate is the number one priority of the WFP, which is now led by a brilliant Black Lives Matter organizer named Maurice Mitchell. He emceed last night’s proceedings and is giving me hope that the party may soon become a powerful national force for racial and economic justice.
In between standing ovations last night, Brad gave me a heartfelt introduction that included various generous statements, but one in particular that stood out to me. Brad said I was using my death as an organizing opportunity. He is clearly right, and lying in my recliner last night I began to wonder why. Why have I chosen to spend this year putting my decline and death on public display? I can think of three reasons:
1. Most obviously, I’m doing it because this world is pretty fucked-up, I am doing what I can to make it better, and I take seriously the insight of the labor leader and civil rights icon Dolores Huerta that “every moment is an organizing opportunity, every person a potential activist, every minute a chance to change the world.” ALS is constraining my ability to do just about everything, including speaking. But what I realized on that fateful December trip to D.C. and flight back with Jeff Flake is that my having ALS forces people to listen to me with newfound attentiveness. Organizing is about using the resources at your disposal to build the power you need to accomplish your goals, and ALS is unfortunately very much at my disposal.
2. I want my death to be something more than tragedy. It will certainly be that, particularly for my family, but I don’t want it to be so one-dimensional. I also don’t want to die in isolation, bitter and angry and jealous. By making my death a communal affair, by inviting my friends and comrades to witness and participate in my decline and disappearance, I am trying to share the burden and lighten the load for me and Rachael. We are spending these final years with joy and triumph (in addition to despair and loss), and that would not be possible if I weren’t open and honest about what is happening to me every month.
3. The people who know me best know that I have always harbored visions of grandeur. But I decided long ago that sating my ambition and inflated ego via the pursuit of raw power would be immoral. Much better to use my drive in the service of collective liberation and siphon off some accolades and authority along the way. After my body expires, I will go on living in the minds of others. How will I be remembered? By whom? And for how long? As is true of any good egomaniac, these questions of legacy have danced around in my head since I was young. ALS cut very short my opportunity to answer them satisfactorily. If Carl is going to grow up without a living father, I at least want to make sure that he has some attractive facsimiles lying around.
I think that is why I’m doing all this.
Sunset, August 10, 2018
Somewhere between Bristol and Bennington, Vermont
We’re driving the length of Vermont for the third time in twenty-four hours and the sun is setting over the green hills and it’s ridiculously beautiful. I can’t help but think that the sun is also setting on our tour and my life, and that they have been pretty beautiful as well. My colleague Sarah Johnson has joined us for these final few days, and we are traipsing around Vermont alongside its eight-hundred-pound gorilla, the bespectacled Jewish Democratic Socialist who is technically running for reelection to the U.S. Senate but is actually looking farther ahead to a national campaign. Bernie would win his reelection by a landslide without lifting a pinkie, so I ask him why he is taxing his septuagenarian body with twelve-hour days in the middle of August. He says it’s a matter of respect for his constituents. They deserve to see him work hard for their votes.
Ana Maria Archila is also on this final leg with me, and we began the day in picturesque Burlington with a big breakfast at an organic supermarket, followed by a rally in the old-timey theater across the street. I know that these are the final public speeches I will ever give, and so I’m taking my time with them, reflecting not only on this moment in our democracy but on my son and wife who are standing in
the audience, and our lives. I try to make my audience cry without coming to pieces myself. It’s a hard trick to pull off, but I have some success. I wrap up with an enthusiastic introduction of the man who needs no introduction, and he pays me the great compliment of beginning his remarks by complaining that I just delivered his speech for him.
Before our second rally of the day, I had an appointment at a physical therapy office in a residential neighborhood in the tiny town of Bristol. Two attractive male doctors opened their clinic on a Friday just for me, and as soon as I roll into their high-tech facility, they begin double-teaming me, one applying a massive vibrating wand onto my incredibly tight inner thighs (technically called my adductors), and the other stretching out my arms this way and that. I cannot tell whether they are enjoying or oblivious to the homoerotic nature of our activities, but I really don’t care, because it feels insanely good. When they’re done, I tell them it was the best session of my entire road trip and invite them to come hear me and Bernie intone the virtues of socialized health insurance. They gleefully accept, and my love for this tiny state grows ever larger when I realize that even its well-to-do medical professionals are raging lefties.
We’re heading for our third and final stop now, where I’m expecting to see for the first time in three years a dear friend from law school who is even more radical and vulgar than I am. He has done what I never had the courage to do: become a public defender and fight mass incarceration one human life at a time. We haven’t even spoken since my diagnosis and I’m pretty sure I’ll break down crying when I have to show him my withered bony corpus.
Midafternoon, August 12, 2018
Portland, Maine
That’s it. We’re done. Six epic weeks, ninety events! Each day chock-full of adventure. I find it fitting that I led my final rally with poop in my underwear. My morning coffee had begun to do its work as soon as I met Liz in the hotel lobby, and there was no time to go through the twenty-step toileting process that my outrageous body now necessitates. I had hoped that one good fart would offer me enough relief to get through the morning’s events, but it was not to be. It is not my first accident of the trip.