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  For Rachael and our children and theirs

  Like a train in reverse down a dark road

  Carrying the whole load

  Just rattling the whole way home

  . . . .

  I’ll set my eyes to the wind

  But it won’t be easy

  To leave it all again

  Just a bit run down here on the sea

  There’s just a stranger

  Living in me

  —THE WAR ON DRUGS, “EYES TO THE WIND”

  FOREWORD

  BY ALEXANDRIA OCASIO-CORTEZ

  Ady and I met on two separate occasions, roughly one year apart. The first instance was in a hot, sweaty Bronx church in the summer of 2018. It was shortly after I had won my primary election, and in the overwhelming shock of sudden attention, our way of dealing with it was to continue organizing as we had been. That day, that meant a labor town hall with local labor unions in the Bronx, rallying around the issues that held the most promise for transforming our community’s life: among them letter carriers rallying for postal banking, sanitation workers demanding protections in the wake of several deaths, and of course—nurses advocating for single-payer Medicare for All.

  A day or two before the rally, we had learned that Ady wanted to stop by and join the workers’ fight during his New York leg of the Be a Hero campaign. I was stunned—(“You mean the Ady Barkan?”)—yes, the Ady Barkan, who had been putting his body on the line to save the ACA, fight for Medicare for All, and advance the causes of working people across the United States, wanted to come to our humble rally in a sweaty church with spotty A/V equipment oft-used for progressive organizing.

  There were scrambles to make it work—the day of, we learned there weren’t sufficient ramps in the pre-ADA constructed church to be accessible enough for Ady’s motorized chair. This launched volunteers on a wild-goose chase. We needed to procure a ramp from somewhere, same day, to make it work. Their resourcefulness prevailed, and a few hours later, Ady arrived with his devoted wife, Rachael, to meet me in the grassy backyard of St. Paul’s Evangelical Lutheran Church.

  The prevailing emotion I recall upon meeting Ady for the first time can be summed up as: Peace. It was the kind of overwhelming peace that accompanies the eye of the storm, where chaos and rallying and cheers and swarms of cameras orbited the perimeter, but for that one moment, we met to assert a sense of grounding and a desire to connect on a most human level. I thanked him and Rachael for coming. They told me that they used to live in the Congressional district. His father came. We talked about the travel; their little baby, Carl; the larger progressive movement. And then we filed into the church with everyone else.

  We listened to service workers, Teamsters, CWA members, and everyday people in the community. We rallied and organized campaigns on health care and a living wage. After about an hour or two, we got up. By that point, Ady could still speak, but he couldn’t hold his microphone, so I held it for him. It would be the first and last time I’d hear his voice offer remarks in public.

  His words were stirring. It was clear that the added difficulty in speaking forced a profound clarity in how Ady communicates with others. He did not have the luxury of wasting breath on half-thoughts. He, along with so many others for so many reasons, is asking us to act now.

  The urgency is real. However, it is not oppressive—what Ady tells us is that we are not being asked to save the world in a day. We are simply being asked to Do Something, today. There is no “something” too small. Because when we all do something, we will change the world as a matter of course.

  A few months after that initial meeting, I encountered Ady again. This time, it was in my congressional office in the Cannon Building of the Capitol. The walls were still bare—I was still moving in—and the room was crammed with activists, staffers, and journalists. Ady had just testified in front of the first-ever congressional hearing for Medicare for All. It was a momentous day—the hearing was in front of the Rules Committee, a small but important step, and we had to fight a great deal to get Ady a seat at the table and prevent lobbyists from settling all the terms. It worked, and that day demonstrated the power of personal testimony. Even through his vocalizer, Ady’s powerful words forced an urgency and moral clarity that members could not look away from or ignore. I saw their discomfort at issuing the usual excuses, and Ady also would not tolerate them—even with many physical capacities gone. He was the strongest person in that room that day. And he prevailed: in no small part due to Ady’s role, Medicare for All was offered a second hearing before the powerful Ways and Means Committee, with powerful jurisdiction that set a high precedent to legitimize and advance the legislation.

  Ady’s example is for all of us to follow. There is no act too small, no person too powerless, no moment too late to make a difference. The revolution rests in each of us.

  Alexandria Ocasio-Cortez

  June 2019

  CHAPTER ONE

  DIAGNOSIS

  Rachael and I celebrated one year of marriage and eleven years together by dropping Carl off with my mother and checking into a boutique hotel in West Hollywood. After four months of bliss with our new son, we were ready for our first night away from him—and for a full night’s sleep. We arrived at the hotel around five p.m. and decided to have sex immediately, in large part so that we could go to sleep right after dinner. It was hot, just like in the olden days, but I’ll spare you the details.

  Later, we got gussied up and went out to dinner at a chic Asian fusion restaurant in Santa Monica, where we indulged in delicious, overpriced cocktails and chili lamb and cold noodles that set my mouth on fire. This was the life. Not only could we each enjoy our intellectually stimulating, meaningful work from the comfort of our Santa Barbara home—Rachael as a newly minted assistant professor of English at University of California, Santa Barbara, me as an activist/lawyer at the Center for Popular Democracy—not only could we raise a wonderfully chubby and friendly baby boy, but with help from Grandma we could even have the occasional evening to ourselves, featuring adult conversations, adult food and drinks, and adult . . . you know . . . full nights of sleep.

  What more could we ask for? We were the happiest and luckiest people we knew.

  After a lazy Sunday morning we met up with my oldest friend, Katy, for brunch. Ever since kindergarten Katy had always been the best athlete and the best student in class. She was eventually recruited to play soccer in the Ivy League, barely missed turning pro, and had spent recent years studying the brain. She was now a first-year medical resident in neurology at UCLA and had just completed her PhD in neuroscience to boot.

  “By the way,” I told her nonchalantly after she had finished recounting her experiences treating veterans at the local VA, “I’m going in to see a doctor on Tuesday to look at my left hand. It stopped working properly. I think I have carpal tunnel syndrome from holding Carl in my left arm so much over the past four months.”

  After our plates were cleared, Katy took a look at it, asking me to spread my fingers against her resistance, to hold them pinched together tight while she pulled them apart, and to touch my nose and her moving finger in rapid succession. Yes, she said, there was clearly more weakness in my left hand than my right.

  “Well, I am right-handed,�
�� I said.

  “Yeah, Ady,” she snorted with some exasperation. “I’m not stupid.”

  After we paid the bill, Katy made me pace toe-to-heel down the Los Angeles sidewalk. That seemed fine. And then she sat me in the back of her car and tested the reflexes under my foot and on my knee. She wasn’t happy with what she found. They were exaggerated, jumping excessively at a tickle or a well-placed pluck.

  “Well, it ain’t carpal tunnel,” she said. “You should see a neurologist.”

  “What are you worried about? Should I still go to the primary care doctor on Tuesday?”

  “Yeah, you should go. Just tell him that your hand is weak and see what he says. Tell him to test your reflexes, too.”

  We said goodbye and Rachael and I drove back to Santa Barbara. The bliss from the previous night was now tinged with worry. Was there something wrong with my brain? But we laughed it off; Katy had seemed so nonchalant. Surely there was nothing seriously wrong.

  From nine a.m. to three p.m. the next day, I had my typical Monday conference calls and supervision meetings for the two projects I was leading, Local Progress and Fed Up. My colleagues and I were coordinating our work to promote progressive local policy in cities around the country and developing a strategy to work with the new president of the Federal Reserve of Minneapolis, who appeared interested in trying to promote racial equity. I finished early and took Carl out so that Rachael, who was still on maternity leave, could do a couple of hours of work.

  I had succeeded in ignoring the previous day’s discussion about my hand, but while walking with Carl on the beautiful cliffs overlooking the Pacific I had more time to think and worry about my situation, so I started sending increasingly concerned text messages to Katy, asking her for more information about what she had found in her brunch-time examination. She refused to say. She told me I had “hyperreflexia” and muscle weakness. I looked up these terms and found results for cancer and thyroid disease. I texted her again: my dad had had thyroid disease when he was young; was it that? “Stop googling!!” she responded. “It has nothing to do with your thyroid!”

  Finally, later that night, I got her to say that she was worried because I was showing signs of both upper and lower motor neuron damage. Rachael and I sat in bed and googled those words. We learned that upper motor neurons were nerve cells that originated in the motor cortex of the brain and ended within the medulla or spinal cord; damage to these cells could result in exaggerated reflexes. Lower motor neurons originated in the spinal cord and ended in a muscle; damage to these cells could lead to weakness and loss of muscle mass. Exhibiting both of these types of neuron damage, as I had during Katy’s informal exam, was a bad sign.

  As we scanned the results from Wikipedia and the Mayo Clinic, it didn’t take us long to land on this:

  ALS, commonly known as Lou Gehrig’s disease, is a [gobbledygook gobbledygook gobbledygook gobbledygook] leading to complete paralysis [gobbledygook gobbledygook gobbledygook] death by respiratory failure . . . 6,000 new patients in the United States per year, with an average age of 50 to 70 . . . 20% of patients live more than 5 years . . . 5% of patients live more than 10 years . . . The only available treatment extends life by 2 to 3 months.

  Holy shit.

  I texted Katy immediately. “ALS? You’re worried about ALS??”

  “I don’t know. That’s why you need to see a neurologist.”

  Holy shit. Holy shit. Fuck. Fuck. Seriously? Seriously? Holy shit.

  I spent the night pacing and muttering to myself. Yeah, that’s a great idea: Just develop an incurable illness at age thirty-two. Fantastic. Fuck. Impossible. Fuck. Things were going so well. I don’t believe it. This is impossible. No way. I paced and paced, repeating the same thoughts over and over and over in my head.

  I ended up on the sofa, finally dozing off as the sun came up.

  Midmorning on Tuesday, I got a phone call from my primary care doctor’s office notifying me that the doctor was out sick. They would have to cancel my afternoon appointment.

  “When is the soonest I can get another appointment?” I asked.

  “Two weeks,” the cheerful office assistant said.

  Hell, no. I wasn’t about to wait two weeks to find out if I had a terminal illness.

  As I took a short walk around my peaceful, sunny neighborhood, I called my best friend from college, Simeon, who had recently finished his residency in internal medicine. A calm and level-headed guy with great emotional intelligence, Sim always offered thoughtful guidance. When I updated him on everything, he seemed relatively unconcerned, because, hey, I was thirty-two years old and ALS was super-rare, even among older people. I was glad to hear that he thought I probably didn’t have ALS, but he hadn’t examined my hands, and Katy was not a worrywart—and she was, unlike him, a neurologist. If she was concerned, something had to be wrong.

  “Should I go to the emergency room?” I asked Sim.

  “No, they don’t diagnose ALS in the emergency room; they’ll just refer you to a neurologist and charge you hundreds of dollars.”

  “How about urgent care?”

  “Same thing,” he said, “except it might be a little cheaper. Just wait for the primary care appointment and then get a referral to a neurologist if necessary.”

  I hung up and tried to focus on work, but my mind was racing. There was no point in sitting there, letting the hours tick by. Then, against Sim’s advice, I hopped into an Uber and went to urgent care.

  “How are you doing today?” the driver asked me.

  “Fine,” I said, lying.

  Minutes later, as I sat in a sunlit and nearly empty waiting room at urgent care, two men walked in. “We think he might be having a heart attack,” the fiftyish man told the receptionist, pointing to another man in his seventies. Yeah, I thought to myself, that’s when you’re supposed to get terminal illnesses, not at age thirty-two. Fuck. Fuck. Fuck.

  “How are you doing today?” the medical assistant asked as she took my blood pressure and weighed me.

  “I’m a little worried about the weakness in my left hand,” I said, deciding to share my stress instead of hiding it.

  Ten minutes later I described my symptoms to the primary care doctor on call and told her that I was worried I might have ALS. “Boy, I sure hope you don’t have ALS,” she said, rubbing her hands together and exhaling deeply. I saw her wracking her brain to remember the symptoms and diagnostic technique for this disease. She ran through the same battery of simple tests Katy had performed over brunch. She banged on my knees a few times. Then she went to talk to the neurologist on call, Dr. Karen DaSilva.

  When the primary care doctor came back, she told me that Dr. DaSilva wanted her to order a couple of MRIs for my spine and brain to see if there was something obstructing my nerves. Sure, I said, let’s do the MRIs. The assistant told me that they couldn’t be scheduled until the following week, plus she needed to get preauthorization from the insurance company. But I pushed, and she found some time for me on Wednesday. I would have to do the two of them separately, instead of back-to-back, but I was fine with that.

  That night Rachael and I tried to watch Silver Streak, a Gene Wilder comedy about murder on a train, but I couldn’t focus or sit still.

  The next day, when my name was called in the radiology department, I stood up and walked past the elderly patients and down a long hallway. I entered the MRI room and lay down on a board. The radiology technician, a quiet man in his thirties, secured my head with some foam blocks, stuck plugs in my ears, conveyed me into a tiny cylinder, and told me to lie absolutely still for twenty minutes.

  As the machine whirred to life, I once again cycled through my disbelief and outrage: ALS. I can’t believe I might have ALS. Holy shit. After some loud buzzing, a jackhammer started to reverberate against the cylinder. Okay, focus on something else, I told myself. Lakers, Clippers, Blazers, Kings. I started to name each of the NBA teams and their divisions, keeping track on my fingers, trying to count all thirty. I lost tra
ck a couple times. Did Charlotte have a team again? The buzzing stopped. The lab tech told me I had held incredibly still and the picture was very clear. Good job. It was the first of innumerable times in the coming years that kindhearted medical professionals would congratulate me for performing simple tasks effectively. Oh, goody. I had held very still for the MRI, but I still probably had goddamn ALS.

  That afternoon Rachael was moderating a discussion in the English department on pedagogy. I went with her and rocked Carl back and forth in his stroller during the first half of the meeting, trying to focus on what people were saying instead of the fact that I might be dead by the time the fall quarter started. Then I handed off stroller duties to Brian Donnelly, a cheery, sarcastic colleague of Rachael’s from New Zealand, and drove off to do the second MRI, this one of my spine. I could easily name all thirty NBA teams this time, so I moved on to naming all twelve Federal Reserve presidents, then tried to name each U.S. president—but struggled in the 1840s, ’50s, and ’80s. Who was president in between the two Grover Cleveland administrations? The machine’s pounding stopped, and again I was told I had done a good job: the spinal picture was crystal clear. Yippee ki-yay, as Bruce Willis would say.

  I went back to pick Rachael and Carl up from the English department. Then I got a text message from my father in New York complaining that he hadn’t received any pictures of his grandson lately. In the parking lot Rachael took a picture of me holding Carl and smiling. It was the first of hundreds of photographs that I would take while trying to put a good face on a very difficult situation.

  At ten a.m. on Thursday, I logged into the clinic’s patient portal to see what the MRIs had shown. There were no test results yet. My hope, at this point, was that there was some sort of an obstruction impacting the nerves leading to the muscles in my left hand (the lower motor neurons). But the hope was thin, because the obstruction would also need to impact the nerves that were causing hyperreflexia in my feet (the upper motor neurons). Still, Katy said there was reason to be optimistic. ALS was super-rare, we kept telling ourselves, especially at my age. But the foreboding was intense.