by Ady Barkan
So when I asked “Why me?” I was also asking the rather mean-spirited question “Why not them?” Why is ALS destroying my life, which has so often been focused on improving the lives of others? Why not destroy the life of somebody who has enriched himself at the expense of others? As Rachael said to me, lying in bed a mere month after my diagnosis, “You get ALS and fucking Donald Trump gets to be president.”
And so, for me, a more complete and satisfactory answer to the question “Why me?” is “Because the world is unjust.”
People with less privilege than I know this and live this reality every day. When an immigrant nail salon worker in Queens is told by her boss that she’s not going to be paid this week, she’s outraged but not surprised: the world has never treated her fairly or justly. When a black man sees a promotion go to his incompetent white coworker, or feels the aggressive hands of a police officer on his body during an unjustified stop-and-frisk, his dignity is under assault in a familiar way: for black people in America, racial discrimination is a fact of daily life.
And, of course, I, too, knew that the world is unjust: I had read about and witnessed and fought against the injustices of poverty and oppression and hatred. But until my diagnosis, the world had not visited its injustice upon my shoulders; I had seen its effects but had not yet felt them myself. As it has for other middle- and upper-class people of my race, global capitalism and America’s commitment to white supremacy have redounded to my benefit. And, indeed, I have built a successful career and a proud self-identity upon confronting those injustices. In that strange way, I have benefited from them doubly.
The injustice of ALS was, of course, different. It hurt worse than wage theft and job discrimination. But it was also not the fault of greedy employers or racist politicians. Scientists may eventually discover some of the environmental factors that contributed to my ALS. Perhaps polluting multinationals are to blame. But we don’t know, and that level of culpability is surely less direct.
Unlike the victims of lung cancer or heart disease, I probably couldn’t blame deceptive cigarette and fast food companies for my illness. And unlike the victims of the HIV epidemic, I couldn’t blame the religious fundamentalists who outlawed sex education and needle exchanges and who for decades forced queer Americans into the closet, or even the rapacious pharmaceutical companies who charged such exorbitant prices for medicine that people in most of the world couldn’t afford them. Who was the villain in my story?
Perhaps I could blame the politicians and the weapons manufacturers who connived to spend our public dollars on bombs instead of on scientific and medical research. Perhaps I could blame the billionaires who used their power in pursuit of a lower tax rate, or the ideologues who tried to shrink the American government to such a small size that it could be “drowned in a bathtub.” Maybe I could even blame the religious fundamentalists’ opposition to fetal stem cell research, which delayed new therapies by years or decades. But these were generic villains, their liability for my ALS attenuated at best.
My villain, I came to realize, was older than they were, as old as humanity itself: for thirty-two years, Lady Luck was on my side; she bestowed upon me nearly everything that I wanted. And then she changed her mind.
By early January, Rachael and I had decided that it was worth trying to push back on Lady Luck and demand that she repair some of the destruction she had wrought. We decided, that is, to explore the experimental medicines that Dr. Merit had told us about. In the middle of the night I logged into Skype and started calling Japan in search of Dr. Hiide Yoshino. After a few tries, I reached his clinic and was told to call back the next day when he would be available to speak with me. By the end of the week Rachael and I had plane tickets and an Airbnb reservation on the east side of the sprawling Tokyo metropolis. Neither the medicine nor Yoshino’s services would be very expensive. Best-case scenario, we slowed down my ALS; worst-case scenario, we had a fun trip to an amazing new place.
We left Carl with my mother and drove to LAX. One flight, two trains, a bus, and a short walk later brought us to the Yoshino Neurology Clinic. The waiting room was filled with frail elderly folks; we immediately made eye contact and smiled at a middle-aged black couple who stood out just as much as we did. They were from Wyoming. Roscoe had been diagnosed two years earlier; his arm was totally useless and his torso was weak, but he still spoke and walked easily. He was the first person living with ALS I had ever met.
Dr. Yoshino performed a standard examination on me to get a baseline. A nurse took some blood; then I was hooked up to an IV bag from which transparent saline and mystical edaravone dripped into my arm for forty-five minutes. Dr. Yoshino had authored two of the earliest studies on the use of edaravone to treat ALS and had more clinical experience with the drug than anyone else in the world. He told me that he had seen it slow the progression of ALS in many of his patients. One young patient from the United States had witnessed the twitching in his arm disappear only hours after his first infusion. Yoshino was giving me real reason for hope.
For five days that week, Rachael and I settled into a wonderful routine: we woke up around seven a.m. and took the crowded commuter train east; we disembarked and then enjoyed a pastry and coffee at the Francophile bakery in the train station; then we took a bus fifteen minutes to Dr. Yoshino’s clinic, where I received an infusion and we compared ALS notes with Roscoe and his wife. By eleven Rachael and I were free to gallivant around the city. Rachael took responsibility for all the planning, but I can’t blame that traditional, gendered distribution of labor on my ALS, since it had been going on for a decade.
The endless urban vistas from the Tokyo Skytree lattice tower; the controlled mayhem of the Shibuya crossing, where gazillions of pedestrians converged and then dissipated with each new “walk” light; the ostentatious materialism of the Harajuku shopping district, nearly indistinguishable from Rodeo Drive or Fifth Avenue, except for the orderly line of two hundred young people waiting on the sidewalk to go into a nondescript building; the surprisingly deserted and tranquil paths lined with towering oak and camphor trees, leading up to the Meiji Shrine, where one of the hundreds of wooden ema plaques jumped out at me, praying as it did to “END ALS”; there was so much to see and even more to eat.
Vegetable tempura washed down with easy-to-drink Japanese lager; toro, the fatty part of tuna, at a bustling shop on the outskirts of the famed gargantuan Tsukiji fish market; a two-inch-thick pork chop, breaded and deep-fried rare, just the way I love it, at the smooth oak bar of a dimly lit, silent tavern; a giant bowl of umami-rich pork broth ramen overflowing with wide, chewy hand-pulled noodles, worth every painful second of the hour-long wait in the freezing cold that the hip Japanese youth had charged us for the privilege of sharing their favorite spot. We had never eaten so well in our lives. There’s something deeply discordant about fatal-disease tourism, like a cruel and compressed version of 1,000 Places to See Before You Die. But I was working hard to savor every bite and every moment.
On Friday, Dr. Yoshino and his staff gave us a six-month supply of edaravone, which we stuffed into an oversized suitcase, and a prescription letter to wave in self-defense in case we got stopped by U.S. Customs and Border Protection. We gave him a box of chocolates in appreciation for his care, and we wished Roscoe good luck. Then we boarded a train out of town, heading for the healing hot springs of Hakone, in Kanagawa Prefecture.
With each passing hour, I felt more and more like Hans Castorp, the chronically ill protagonist of Thomas Mann’s The Magic Mountain, whose search for health took him to the alpine air and water. We transferred from our modern train to a much smaller and older variety, which slowly wound its way up steep mountain slopes and deposited us at the foot of an even steeper funicular, which we rode ever higher. At the top, we rolled our suitcases down a quiet snowy road—my steps deliberate and cautious, like those of an old man who is no longer sure of his balance—and turned left into our onsen (hot spring) hotel.
We immediately traded our
shoes for slippers and were shown upstairs to our room, where mattresses were unrolled on the floor. In the evening Rachael helped me maneuver my legs under the low table and propped me up with some pillows; the staff then delivered a string of courses, each more elaborate and colorful than the one before, with countless small bowls of fish and vegetables, steamed and smoked, pickled and braised. I delighted over the presentation, even though the flavors could not compete with Tokyo’s offerings.
After dinner we each headed for the indoor hot springs on the floor above, separated by gender. Mine was deserted, dimly lit, and warm. The sulfuric, opaque steaming water was piped up from the natural springs below. I disrobed, rinsed off, and climbed in. In breath. Out breath. The condensation on the glass. The sound of trickling water. The minerals on my wrinkled fingertips. I stepped outside, where two white bathtubs sat overflowing with water piped into them by bamboo tubes; snowflakes danced their way out of the sky and past my balcony. In breath. Out breath. This moment, I told myself. Right here. Right now.
I turned the pampering knob up to 11 and called for a masseuse to come to our room. She pounded and pulled on my limbs and left me a gelatinous pile on the floor, sleeping peacefully.
The next day we joined the stream of tourists traipsing through the sights of Hakone, aided by the multimodal transportation network: an antique cruise ship across the lake, a bus up the mountain for a closeup view of Mount Fuji, a ropeway gondola soaring above the winter landscape. And then back to the train station, where we headed for the final destination on our trip.
Kamakura was the twelfth-century feudal capital of Japan, and it has the shrines to prove it. We started at the Daibutsu, a forty-foot bronze Buddha that had been sitting for eight hundred years. He had survived so many wars and earthquakes and fires. My life was a blink of his eye. The next shrine had incredible flora, even though we were too early for the famed cherry blossoms. But after the third one, nestled in a towering bamboo forest, my left leg revolted. Walking was suddenly painful. My body was decaying. No amount of denial or mindfulness could change that reality. And if a week of treatment was any indication, edaravone couldn’t, either. My twitching, unlike that of Dr. Yoshino’s earlier American patient, was still going strong.
When we got back to Santa Barbara, I turned my attention to the task of designing a system for administering my new drug. No licensed medical professional in the United States would be comfortable giving me the drug on a regular basis, since it wasn’t approved by the FDA. Rachael was up to the challenge, but she needed training, equipment, and a plan. Nurses at Yoshino’s clinic had connected the IV to a vein in my arm, pricking me each day anew. I worried that this wouldn’t work for me and Rachael: it would be tricky, painful, and damaging to my veins over the medium term. Instead, my aunt Deb found me a local oncologist—much closer to the end of his career than the beginning—who was willing to order the placement of a PICC line in my arm and teach Rachael how to access it. From then on I walked around with a thin plastic tube hanging out of my biceps, secured with a short white fishnet stocking. To shower or swim, I slipped on a rubber sleeve and suctioned out the air with a small rubber pump. And fifteen evenings per month, after a day of teaching and research and an evening of cooking, cleaning, and child care, Rachael became my infusion nurse and went through an elaborate, regimented recipe: Put on gloves, break the ampule, fill the syringe, inject into the saline, hook up the secondary IV line, clean the PICC line, attach the two tubes, open the line. . . and then pray that the dripping begins. I was responsible for sourcing our contraband paraphernalia, including the saline, the price of which was being artificially inflated by the duopoly that controlled its manufacture in the United States.
Having a PICC line led to plenty of curious glances and dispiriting conversations, so I was glad to eventually trade it in for a port—shaped like a Ping-Pong ball cut in half—implanted just under the skin in my right peck. The kind oncologist gave us a prescription for Huber needles, and Rachael learned to stab confidently until the tip of the needle met the small metal plate in the back of the port. Things got simpler in the fall of 2017, after the FDA approved edaravone and a visiting-nurse agency provided us with all the equipment and medicine we needed. Our costs went down, but the costs to the American public skyrocketed, because the brand-name price was fifty times more than I had been paying to my generic distributor in India.
For a few precious months in the spring of 2017, we managed to settle into a rhythm that approximated our pre-diagnosis life. I returned to working on both Fed Up and Local Progress, albeit at a less ambitious pace. I dedicated real time to my health, swimming at the local YMCA, going to physical and occupational therapy for stretching and light exercise, seeing a kind and thoughtful psychotherapist each week to help me work through the difficulties, and doing my calf exercises during conference calls. I also returned to a basic role as a father and husband, picking Carl up from school, cooking dinner, bathing him and putting him to sleep, and doing the dishes—deliberately, with as much focus and calm as I could muster. We had not returned to parity—Rachael was still doing much more of the housework and child care—but I was no longer depressed, and we had a real partnership again.
Alas. It could not last.
CHAPTER FIVE
LOCAL PROGRESS
I kissed Rachael and gave a goodbye head rub to each of our beloved gray-and-white cats, Francesca and her litter-mate big brother, Dante. Then I left our Astoria apartment and joined the stream of commuters heading down into the subway. On the humid platform I was happy that the dress code at my new job encouraged jeans and a T-shirt. After three stops on the M train, I followed the underground signs pointing me toward a mythical creature about which I had only ever heard urban legends. The G train was subject to frequent derision and mockery. “Does it really exist?” Manhattanites asked with a grin. “Nobody has ever actually seen it,” came the condescending reply. I stood on the platform at its northern Queens terminus, peering down the dark track, looking for evidence of its potential arrival. The other dozen people waiting with me seemed unconcerned, so I, too, scrolled through my phone.
Eventually two white lights emerged from the darkness and ushered the four-car train into the station. We shuffled on and spread out in the cool, air-conditioned car, each occupying a different segment, keenly aware that our compatriots around the city were jammed together like sardines. The train reversed directions, slowly chugging its way south toward Brooklyn.
I exited six stops later onto Flushing Avenue. I pulled out my phone, which told me to walk twelve minutes west. I passed rows of dreary beige-brick apartment buildings with bars on the windows and trash cans parked out front. There were no trees on the narrow sidewalks, which were littered with detritus. On the south side of the street, a few black men were playing basketball on a court inside the Marcy Houses projects; across the street, Hasidic women with long black skirts and headscarves pushed strollers and ushered along large posses of children. I passed kosher groceries and a small factory where workers were manufacturing doors, then turned left up the hill onto Kent Avenue.
Casa Kent, as we would soon christen the building, was a three-story brown-brick house, with beautiful hardwood floors and a wide spiral staircase. The furnishings were still sparse, but my comrades had already begun to adorn the walls with colorful revolutionary posters. I was greeted by my boss, Amy Carroll—a tall, charismatic thirty-seven-year-old whose one-two approach to banter was to disarm you with genuine warmth and then smack you across the face with her vulgar sarcasm. “Welcome to our wonderful new home,” she said, “right here in the filthy armpit of Brooklyn.”
It was the second time in my short career that she had hired me. She had been the legal director at Make the Road New York when I got a fellowship to work there the year after law school, and she had then left to found the Center for Popular Democracy with her boss Andrew Friedman, who was a bit older, a lot balder, and only a little less vulgar than she was. They had asked me t
o join them in their new venture because I was, to use Amy’s favorite word, scrappy.
Over the preceding fifteen years, Make the Road New York had become an institution in the city by providing crucial services to its Latinx membership and organizing them into a potent political force. By 2012, Andrew and Amy were ready for a new challenge, and the mission of the Center for Popular Democracy would be to help community-based organizations learn from one another and build power through the provision of services, leadership development, and political mobilization. As we explained in our promotional material and grant applications, we would help our partner organizations build their muscle and flex it in pursuit of a pro-worker, pro-immigrant, racial justice agenda.
Most community organizations that engage in politics focus on the local. The city council is where you go to get more funding for your neighborhood after-school program, to strengthen protections for tenants facing eviction, to win paid sick days or fair schedules for workers, or to demand accountability in the aftermath of a police shooting. Local governments make many of the quotidian decisions that impact residents’ lives. And, of course, it’s also where you focus your energy if you have limited political power. It is much easier to influence the vote of a council member than a member of Congress.
This was particularly true in the fall of 2012. With Republicans controlling the House and the Senate, there was no hope of progressive change coming from Washington, D.C. With Republicans also in charge of most state legislatures, progressives’ primary opportunity for enacting an affirmative agenda was at the local level. I had been hired at CPD to try to improve the ability of community-based organizations to win progressive victories at the local level by building a network of progressive legislators. While many city council members around the country shared strong social justice values and confronted many of the same challenges, there was no place for them to come together to build solidarity and share their experiences and best practices. Hence my job, building what we called at first the National Municipal Policy Network.