by Ady Barkan
Our college friends Sim and Davida were visiting the weekend that a pulmonary therapist brought over the ventilator and showed us how to use it. My doctor friends pelted her with difficult questions, and I tried to get used to having a machine rhythmically blowing air into my mouth. Sim assembled a shower chair for me, because the suction grab bars that I had installed a few months earlier were no longer sufficient to keep me safe.
Around the same time, a different medical device provider came over to deliver a power wheelchair. It was an incredible machine, with an incredible price tag of $35,000. Luckily, we had navigated the insurance bureaucracy and it didn’t cost me a dime. The wheelchair had a very comfy seat and back, which would prove crucial once I started sitting in it for twelve or more hours a day. It tilted back and elevated up and moved in all sorts of creative directions to allow me to stretch or stand up or hang upside down if I needed to. But I wasn’t yet ready to become a person who uses a wheelchair, so I put the device in the garage and tried to appreciate my final months of walking around.
The worst news of the month came from my neurologist, Bob Baloh at Cedars-Sinai. He was investigating an early-stage stem cell treatment that might slow down the pace of ALS progression. He had also come up with an innovative clinical trial: rather than treating some patients and leaving others with placebos, he was injecting his fetal stem cell concoction into the spinal cords of all the patients in the study, but only in locations that would impact one leg for each patient. He planned to assess the differential between the two legs in order to determine whether the treatment was working. For a year I had held off on enrolling in his study in the hopes that Dr. Baloh might eventually agree to give me a more comprehensive solution. I wanted him to work his magic throughout my spinal cord, including in the upper regions that control breathing functions. We could apply for permission to conduct a single-patient clinical trial, I would find a way to raise the money, and I would marshal my political contacts to help get the FDA’s permission, I told him. During late 2017, he expressed some openness to the idea, saying only that he needed a bit more time to do pre-clinical work and get his colleagues on board. I was optimistic. But in January, Dr. Baloh burst my bubble, telling me that he wouldn’t be able to move forward before September at the earliest, and that my breathing would likely not be strong enough to tolerate spinal cord surgery at that point.
This news was a particularly hard blow because it was the last medical intervention that I believed had a chance to arrest my ALS. The edaravone that I had brought home from Japan had clearly not done the trick, and neither had the various supplements or vitamin shots. Also useless were the drugs in clinical trials that the Boston doctor Merit Cudkowicz had spoken about hopefully: masitinib, tirasemtiv, and NP001. These were all failing their studies. If Baloh was unable to move forward quickly with a full-body stem cell treatment, then I was surely headed for complete paralysis. Maybe future generations of ALS patients would benefit from meaningful medical advances, but they would come too late for me. On this front, acceptance was turning out to be a wiser course than hope.
In between DACA machinations, breathing-machine disputes, and depressingly glacial scientific progress, I at least had good news on my book project. Two literary agents had reached out to me during the tax fight to see if I had ever considered writing a memoir. Yes, I gleefully replied; I even had a sample chapter for their review. After some interviews and reference checks, I signed with Ms. Rachel Sussman of New York City, and we landed on a working title.
By the end of January, I had a ventilator to help me breathe, a wheelchair to move me around, a home health aide to take care of me, no more hope of a medical breakthrough that might help me, a literary agent to sell my book, and a national platform from which to bloviate and organize. Life and death were both moving quickly, and my daily existence was very different from what it had been only two months before.
My health insurance company denied a claim of mine for the second time, telling me that I was too ill to benefit from edaravone, the Japanese drug, which had recently been approved by the FDA. This time I decided not to get outraged on Twitter. Instead, I would take my complaint to their doorstep. I wrote up a series of ten questions for Health Net—Why was my claim denied? What process was used to evaluate it? How many claims have you denied this year because they sought “experimental” treatment? How many times have people appealed your denial? How many times have you reversed your decision?, etc.—and printed out a hundred copies. Brian, my cheery friend from UCSB, drove me down to Health Net’s corporate headquarters in the suburbs of Los Angeles, where we were met by my mother, my protest comrade Jen Flynn Walker, and a two-person film crew from the online news outlet NowThis.
We walked/rolled around the Health Net offices, handing out my list of questions and asking employees if they could help us get answers. Finally a public relations representative came out to speak with us. We sat down in an empty conference room and started going through my questions. He couldn’t—or wouldn’t—answer a single one. Two days later, NowThis released a three-minute video documenting my fruitless excursion that got over 8 million views. I published an op-ed in the Nation describing my experience and arguing that it was time to dispense with our wasteful, inefficient, infuriating for-profit health insurance system in favor of a single-payer Medicare-for-all program. Health Net again reversed its decision, but by then it was too late. They had messed with the wrong dying activist one too many times. A consumer rights lawyer reached out to me, and within a couple days we had made plans to file a class action lawsuit against the company.
The political battle over DACA was also heating up, and I was eager to get back to Washington, D.C., and throw my support behind the brave undocumented youth who were risking deportation by engaging in creative and transgressive acts of civil disobedience. (Eight years earlier, in law school, I had written an unorthodox paper about the immigrant rights movement that theorized about the First Amendment rights of undocumented immigrants to do precisely this—make their political claims more powerful by announcing their status at protests—so I was eager to witness these acts of democratic constitutionalism firsthand.) Donald Trump and his white nationalist movement were seeking to expel as many brown people as possible from America. White people like me have a particular moral obligation to resist his agenda, and I was excited that Cristina Jiménez and her crew at United We Dream wanted me to join their fight.
But I could no longer travel alone. I needed a chaperone. So I called up Nate Smith. He and I had met twenty years earlier in Algebra II during the fall of freshman year of high school. Neither of us had known anybody, so we had started eating lunch together. He was quiet and intelligent, far less willing than I to break rules or challenge authority, much better read, and a good bit more disillusioned with the consumerist McMansion society we were growing up in. I listened to the Beatles, he listened to the Ramones, we listened to Dylan together. I ran the 400, he threw shot put. I fell asleep almost every morning in AP Chemistry, he stayed awake and set the curve on the exam. When we went to see High Fidelity in the theater, he had to explain to me both meanings of the title’s double entendre, and most of the film’s musical references. By senior year we had shed our adolescent awkwardness. He was elected class president on the strength of his hilariously sarcastic campaign video (promising to expand the lunch options so vegetarians would no longer have to eat their textbooks, etc.), and I was only slightly offended that he hadn’t asked me to be his campaign manager. When he and I “established” the Middle Aged Motor Association (MAMA) student group (which had a membership of two), our friends over at the yearbook happily played along and dedicated a half-page spread to photos of us splayed out provocatively on the hoods of his puke-brown 1984 Toyota Camry (“El Tigre”) and my navy-blue 1988 Cadillac Sedan DeVille. God, I loved that boat.
After getting his BA from Harvard, Nate took a predictably counterculture path and became a fancy Los Angeles cook. But that road offered offensi
vely low pay and long hours, and in 2018 he was preparing to change careers by getting a master’s in software engineering. But all his classes were online, so when I called him to see if he would like to accompany me on an excursion back to our nation’s capital, he didn’t hesitate.
We spent our first night together at a hotel outside of LAX, where he helped me get undressed, adjusted and readjusted the many pillows that we used to prop me up in bed, and fiddled endlessly with the masks on my ventilator. He schlepped my bags, helped me walk down the airplane aisle when I had to pee, and delivered me safely to my new home away from home, the Capitol Skyline Hotel. I introduced him to my many comrades at the Center for Popular Democracy and the charismatic leaders of the Women’s March. He had majored in government and was up-to-date on the day’s political news, but he had never seen the sausage-making from up close. He liked many of the people he was meeting but was a bit surprised by the ad hoc nature of our work. Neither of us knew just how much ad hoc politicking lay in store for him.
At a church near the Capitol, Nate helped me up onto the stage, where I sat with immigrant leaders and members of Congress. A thousand activists from across the eastern seaboard jammed into every corner of the nave. All of the other speakers delivered their remarks from the podium, but when it was my turn, I sat next to it in my uncomfortable manual wheelchair. Holding the microphone up to my mouth was too tiring, so I depended entirely on the strength of the audience’s voice, repeating each of my mic-checked lines in booming unison. When our program was done, we marched ten blocks in the light drizzle. Then the United We Dream students filled the halls of Congress with their bright orange knit beanies and their T-shirts demanding a “Clean Dream Act Now!” They marched from office to office, pouring out their humanity, challenging the members of Congress to justify their callous cruelty. At the end of a long day we congregated back in the Russell Building rotunda, where dozens of immigrant youth strapped enormous bright cardboard butterfly wings to their backs and others unfurled gorgeous artwork from the balcony. Their choreographed dances and songs, worthy of any stage, gave voice to their desperation and their dreams. Nate wrapped an orange bandanna around my forehead and we joined them in a tight circle, where I pounded my cane on the ground to the rhythm of their clapping. Once again the police took us away. Once again our pleas failed to move the Republican leadership. Trump, McConnell, and Ryan were unwilling to permit an up-or-down vote on DACA. If the undocumented youth were to receive some stability and peace of mind, then other immigrants and border communities would have to pay a steep price. We flew home, inspired and dejected at the same time.
In March we would try one last time. Trump had announced that the DACA program would terminate on the fifth, so hundreds of us gathered on the National Mall. Muslim and Jewish religious leaders locked arms with Latinx youth; Nate pushed my wheelchair, and once again I held Cristina’s hand. At the intersection between Congress and the House office buildings, one hundred protesters sat down and blocked traffic. I went inside with the imams and rabbis. I stood up out of my wheelchair. Two of the most prominent Muslim leaders in America took my arms. Step by careful step, Omar Suleiman, Nihad Awad, and I walked down the corridor, toward the pack of flashing and rolling and live-streaming cameras. When we got to Paul Ryan’s office door, I lifted my cane and knocked—quietly at first, but louder and louder as it became clear that his staff would not even face our delegation. “If you do not disperse,” the police bullhorn blared, “you will be subject to arrest.” It was the first time in memory that Muslim-American religious leaders had engaged in civil disobedience, a testament to Linda Sarsour’s hard, careful organizing and her commitment to multiracial solidarity.
Although our pleas again fell on deaf ears, the courts stepped in and declared that the Trump decision to end DACA was arbitrary and capricious. The urgency to find a legislative solution dissipated, and with it the little hope we had of winning for the immigrant youth citizenship. Late at night on a phone call debriefing the struggle, Cristina Jiménez told me and Ana Maria Archila and others that it was time to turn our attention to the elections. Only a new balance of power could make life more secure for her people.
From D.C., Nate and I headed north to Baltimore, where we met up with Liz Jaff to figure out how we could help deliver that new balance of power. Of the 197 Democrats in the House of Representatives, about 90 belonged to the Congressional Progressive Caucus. I was slated to receive the caucus’s “Activist of the Year” award at its annual conference, where many movement progressives would gather to scheme about the election and make plans for its aftermath. Liz and I sat in a lounge outside the main auditorium, batting around ideas for how we might help flip the House to Democratic control. If we raised enough money, maybe we could run ads about the importance of health care and the threat posed by Republicans to families like mine. Or maybe we could raise money for voter registration and mobilization by community-based organizations like those in the Center for Popular Democracy network. Someone told us about an upcoming special election for a House seat in Arizona. It was a heavily Republican district, but the Democratic candidate was strong, and—who knows? we thought—maybe anti-Trump sentiment was fierce enough to make an upset possible. We decided to take a field trip to Phoenix. As the conference came to a close, Representative Keith Ellison of Minneapolis presented me with my award. I mic-checked a twenty-minute speech, condemning the cruelty of the Trump administration and the cowardice of the corporate Democrats who had run the party for far too long. As I rattled off the long list of Progressive Caucus members who would chair House committees under a Democratic majority—Maxine Waters on Financial Services! Jerry Nadler on Judiciary!—I wondered what path America would take in November. The polls were looking pretty good, but, of course, they had looked good in 2016, too. And it didn’t seem like luck was something I could be counting on.
Back home in Santa Barbara, Nate and I began making arrangements for our April excursion. We would spend a few days in Arizona trying to influence the media narrative and excite the Democratic base; then we would travel to Atlanta and Athens, Georgia, to support two bold candidates who were running in Democratic primaries and schmooze with high-dollar donors at the Democracy Alliance conference; and then we would wrap up at CPD’s quaint farmhouse in New York for the organization’s quarterly staff meeting. The logistics would be extra complicated this trip, because we decided it was time for me to start using my power wheelchair. At each stop, we would need to rent a wheelchair-accessible van, along with the usual recliner and an accessible hotel room.
Special elections matter in large part because they are bellwethers for the national mood. Donald Trump and the Republicans in Congress were exceptionally unpopular. But would that translate into electoral victories for the Democrats? The special election in Arizona’s Eighth Congressional District would tell us a lot about what would be coming in November. Surprisingly, however, national Democrats were not investing heavily in the race. They probably thought it was unwinnable because its voters had chosen Trump by over 20 percentage points and its former Republican congressman by an even larger margin.
Liz Jaff and I had competing theories for how we might impact the midterms. I believed that the key would be getting more Democrats to actually come out and vote. Midterm elections are famously low-turnout affairs; many people (especially young, black, and brown people) who vote for Democrats in presidential elections fail to show up for the midterms. If we could motivate more of them to take this election seriously, then we could win back the House and maybe even the Senate. Liz looked at things differently. She knew that one of the key reasons Trump had won was that suburban and working-class white people had flipped from voting for Obama in 2012 to voting for Trump in 2016. Our goal, Liz thought, should be to convince these voters that the Republicans were hurting their families. To make the case, there was no example more powerful than health care and no messenger better than me. And Arizona’s Eighth Congressional District was the perfe
ct laboratory to test her hypothesis: it was home to one of America’s first planned retirement communities, Sun City, and had enormous numbers of senior citizens. Senior citizens who vote. Senior citizens who depend on Medicare every day. The candidates in the race fit our narrative perfectly. Our opponent was a standard-issue Republican troglodyte with bleached-blond hair and an avowed commitment to repealing Obamacare, regardless of how many people that would hurt. The Democrat, Hiral Tipirneni, was a charismatic public health doctor who knew how to talk about public policy in simple language that resonated with voters’ lived experience. And, of course, Phoenix was the one place where I actually had some name recognition, at least among political reporters—the Arizona Republic had published a play-by-play of my entire eleven-minute conversation with Jeff Flake—so my upcoming campaign excursion might actually generate some local headlines. That, at least, was our theory.
Nate drove up to Santa Barbara and we headed to our picturesque airport. Rachael gamely agreed to join us for the Arizona portion of our trip, and she took Carl out of day care for a few days so he could come, too. Liz met us in Phoenix, bringing along a scrappy film crew from People’s Television, a production company based out of SoHo founded by a radical named Nicholas Bruckman. Nick and his team would follow us around for a few days and then produce some hard-hitting thirty-second ads that Liz would try to get up on television in the crucial final days before the election.