Eyes to the Wind

by Ady Barkan

  At midday we got a call from a junior staffer in the clinic. I sat down on our living room sofa. “Good news!” the voice said. “Your MRIs were negative.”

  “No. That’s not good news,” I said, my heart dropping into my stomach. “That’s terrible.” A negative result meant there was no physical obstruction of my nerves causing these symptoms. The nerves just weren’t working. ALS was the most likely explanation.

  Rachael walked over to hold my head against her body. We started to cry.

  After about half an hour I decided I couldn’t wait any longer: I needed to get a more official answer immediately. I got in the car and drove over to the neurologist’s office. I told the receptionist I had to see the doctor. He said that was impossible, as Dr. DaSilva had a fully booked schedule. I told him the details of my situation and that I had to see the doctor right away. He said that was impossible, that I needed to make an appointment. “I understand that there are rules,” I said, “but those rules need to be broken right now. Please go talk to her.”

  After a wait, the neurology nurse called me into her office and we talked through the situation. She had a friendly smile and long curly hair. She sat behind a desk and asked me to tell her my story. Through my tears I told her that I had a beautiful four-month-old baby at home and an amazing life and what a shame it would be if I had ALS. She handed me a box of tissues and said I shouldn’t despair yet, shouldn’t lose hope, and that she would adjust the doctor’s schedule so that I could see her in the morning.

  Rachael and I took Carl for a walk along the shoreline just south of Santa Barbara. I got a text from Sim. “How would you guys feel about a visit this weekend?” It was a grand gesture: he and his wife worked ridiculous hours as residents and had a baby girl at home; flying out from Boston for the weekend was certainly unusual. “That would be amazing,” I texted back.

  After one of the longest nights of my life, Rachael and I put Carl in the car and drove to the neurologist’s. As we walked into the office, Rachael holding Carl in a carrier, all the staff oohed and aahed; thankfully, they didn’t see many infants in the neurology department. Although Rachael and I were both skinny, four-month-old Carl had the shape of the Michelin man. The staff loved the huge rolls of fat on his dangling legs. And, as usual, he was all smiles.

  In the examination room I sat on the bed, my feet hanging over the side. Dr. DaSilva, who looked just a few years older than we were and who had classic Santa Barbara sun-stroked sandy hair, was warm and welcoming. She listened to my story and ran the battery of muscle and reflex tests with which I had become familiar.

  And then she tried to let us down easy, using tentative language. “I do see concerning signs of upper and lower motor neuron loss, which are indicative of ALS.”

  I stared at the ground, then put my head in my hands.

  “Are you all right?” she asked me.

  “Well, you’ve just given me a death sentence.”

  Rachael started to shake, tears coming down her cheeks. She held Carl. Then I held them both. The doctor moved toward the door and asked if she should give us some space. I said no. I wanted her there, sharing our sorrow. I didn’t want to be just one more patient she saw in her busy day. I wanted her recognition that my case was tragic and shocking and unreasonable.

  “This is so outrageous,” I told her. “I’m thirty-two, with a four-month-old baby.” Had she ever had an ALS patient as young as me? “No,” she said: I was the youngest she had seen. I wanted her to cry, too. “We had our whole lives ahead of us,” I told her, “and now it’s all disappearing.” Would I not be able to see Carl grow up into a boy and a man and a father himself? Would I not be able to sit with Rachael in our old age and look back on a joyful life filled with meaningful work and rewarding friendships? Our lives had been so different just the day before.

  The doctor’s tears came.

  As we gathered ourselves, Dr. DaSilva said that we should go to Cedars-Sinai Medical Center in Los Angeles to get a second opinion. I asked her what the odds were that her diagnosis was incorrect. Five percent? One percent? “You should get a second opinion. But I would never give anyone this diagnosis if I weren’t certain,” she said. Zero percent was what I heard.

  As Rachael and I walked out through the waiting room, I looked at the receptionist who had insisted just yesterday that I needed an appointment to see the doctor. “See,” I wanted to tell him, “I’m not some lunatic hypochondriac. I really did need to see the doctor yesterday, and today my life is ruined.” But I just smiled and said thank you as we filled out some forms and scheduled a follow-up visit.

  That afternoon, not knowing what on earth to do with ourselves, Rachael and I took Carl to the park, where a group of new mothers was doing some light yoga while their infants rolled around on a picnic blanket. I stretched and breathed and looked at the sunlight beaming down through the trees; I cried silently through downward dog and then laughed as the babies cooed at one another.

  In the evening, before putting Carl to bed, we Skyped with my father and stepmother in New York. Rachael and I sat on the sofa next to each other and pointed the camera toward Carl, who was playing on his floor mat with toys hanging above him. He could hold them in two hands now and was becoming a master at tummy-time push-ups. Watching him, my father laughed and exclaimed with joy. And, seeing him laugh, I thought to myself, These are the last minutes of unadulterated joy that you will ever have. After today, you will be sad every day and your happiness will always be tentative and constrained and inhibited. These are the words you think to yourself before you break your father’s heart.

  Finally, we mustered the courage to turn the camera away from Carl to ourselves. Never in my wildest nightmares did I anticipate having to deliver news like this, but here we were. Like ripping off a Band-Aid, we told them about my diagnosis, that my life expectancy was two to five years, and that there was no good treatment or cure. They were predictably shocked.

  “Oh, no!” my stepmother gasped repeatedly, unsure of what else to say.

  “I just wish it could be me instead of you,” my father said through his tears.

  In that moment and in many moments after, I thought of my father’s cousin Udi, after whom I was named. Udi and my father had grown up in the 1950s and ’60s in the suburbs of Tel Aviv, Israel. They were best friends. Their parents had fought in the 1948 Arab-Israeli War and they had been the first generation of children born in the new state of Israel. Udi had been killed at age eighteen while serving in the Israeli army: a friend’s gun went off accidentally while they were in the barracks. Udi’s parents, who had no other children, were utterly destroyed by their son’s death. I remember them as reserved and sad, even in moments of laughter and joy. I always wondered if my cousins and I were constant reminders of what they lacked, what they had lost.

  “There is nothing harder than burying your child,” I remember my grandmother, Udi’s aunt, telling me once. “Nothing.” On Skype, through my tears, I recounted her sentiment to my father. “I am so sorry that you have to go through this,” I told him.

  It wasn’t supposed to be like this. I was supposed to lose him—and at some distant point in the future, a fact that had overwhelmed me whenever I had thought about it. Sigmund Freud wrote that a father’s death was “the most important event, the most poignant loss, in a man’s life,” and I had been sure that the same would be true for me. But now the roles were reversed: it was me telling him that my years were coming to an end and that he would have to live on without me.

  My father and stepmother booked plane tickets to come out on Monday. First, however, we would have a visit from Sim and his wife, Davida. I was desperate for their company.

  We met Sim and Davida at the LAX In-N-Out Burger for a classic California arrival lunch. They had just flown in from Boston, and I had already shared the news by phone the day before, as soon as we had left the neurologist’s office. As Sim walked in the door, we embraced, cried, and tried not to make too big a scene. Sim had
been my first really close friend at college, and he and Davida had been together even longer than Rachael and I had, hooking up on some crunchy lefty Jewish spring break trip to Central America during our sophomore year. The four of us had been close for over a decade. This was their first time meeting Baby Carl, who sat in a high chair playing with the wrapping paper from my Double-Double, unconcerned with the adult conversation going on around him.

  “I’m going to be doing three things,” I told them, recapitulating the thoughts that I had worked through with Rachael and in my head the night before, lying on our bed, crying. “I’ll have to spend time on medical shit, with doctors and physical therapists and experimental medicine. And we’ll spend time mourning what I’ve lost, and what Carl and Rachael have lost—decades together learning and laughing and loving. But we will also need to have fun and enjoy whatever time we have left together. Hopefully we spend as little time as possible on the first two and as much time as possible on the third.”

  Sim was amazed that, twenty-four hours after receiving my diagnosis, I already had a working theory of how to handle my decline and death. I took that as a compliment but didn’t see any alternative. The clock was ticking and there wasn’t much I could do about it except push forward.

  That, at least, was how my ego wanted to approach it. My id had other ideas. At In-N-Out, I looked at the older children and teenagers with sadness, jealous that I would never see Carl grow to their age; on the freeway home I looked at the senior citizens in other cars with fury, jealous that I would never get to enjoy a drive along the coast with my wife during retirement.

  Over the course of the next day, we talked about my feelings and their feelings and the disease. We tried to talk about other things, but my mind always returned back to a loop of outrage and disbelief. It was October, and we went to buy a pumpkin. We drove to a neighboring beach town that was hosting an avocado festival. As we walked through the masses of people, I thought to myself, Your lives are all proceeding normally, just as they were yesterday, but my world has been turned upside down, and you have no idea. But of course I also had no idea what was happening in their lives.

  We gave Carl his first bites of solid food, a somewhat underripe avocado that he spat out. Since my father was from Israel, where avocados were a special treat in the middle of the twentieth century, they were a big deal in my family. As my father told it, when he was a boy, he always spread the avocado thinly on his toast in order to save the precious commodity, while his cousin Udi would slather it on in heaps, provoking outrage in my father. When we moved to California in 1989 when I was five years old, my father planted an avocado sapling in our backyard and tried to grow another from a pit suspended in water. Rachael and I now had our own small tree growing in our backyard. Will I live to eat its fruits? I wondered.

  As we sat at the picnic tables watching kids play volleyball and the sun set over the Pacific, I hoped that Carl would change his mind about avocados. Sim and Davida promised me that he would come to love food just as much as I did, and they’ve already been proven right: by the time he turned one, Carl was eating four square meals a day.

  In the morning I insisted that Sim and I go for a run. I didn’t know how many more opportunities I would have to do so. We drove to a beautiful path in nearby Montecito that rose up on the cliffs above the beach. There wasn’t a cloud in the sky. The run was short, less than a mile each way—much easier than my usual runs. But this time I began to feel that my left leg’s stride was slightly off; it didn’t quite plant properly or turn over with the smoothness that I was used to. When we got to the turnaround point, next to a cemetery and surrounded by gorgeous wildflowers and enormous blue agave, I told Sim that I had often imagined scattering my ashes at this point, overlooking the vast Pacific. And then I made a joke about The Big Lebowski, the Dude and Walter weeping as they wiped Donny’s ashes off their clothes. We soaked up the moment in all of its intensity and ran back down the hill.

  Later, exhausted from the run and from a week of near sleeplessness, I took a long nap—and woke up daydreaming of Janet Yellen and Hillary Clinton. That sounds odd, but these two women were central to the future of my career and our country—and focusing on my work allowed me a much-needed moment of clarity and purpose. Through the Fed Up campaign that I directed, I hoped to help reshape the Federal Reserve into a fully public entity representing the interests of all the American people, not just those on Wall Street. This, I knew, was the path to a fair economy and full employment.

  As I lay in bed, I plotted out the broad strokes of our strategy. The major banks, I knew, would fight us each step of the way. But the logic of our position was unassailable: there was no good reason that portions of the Fed should be literally owned by Wall Street banks, unlike every other institution of government. We would mobilize community-based organizations and labor unions around the country and enlist the support of consumer groups and student activists, and maybe even some family farmers. With powerful allies like John Conyers, Elizabeth Warren, Bernie Sanders, Maxine Waters, and Sherrod Brown on our side, and with the momentum from a Democratic victory in the upcoming presidential election, we might actually be successful.

  I pictured myself lying in a hospital bed, wheeled into the West Wing for the ceremony where President Hillary Clinton would sign the Federal Reserve Reform Act, then hand me one of the pens she had used. Lying in that hospital bed, I would throw my fist up in the air, and I would be happy.

  Energized for the first time in a week, I jumped out of bed and joined Sim, Davida, and Rachael in the kitchen. Sim had rolled out some fresh pizza dough; Davida had prepared an exquisite plate of cheese, salami, and olives, and was now shaving asparagus onto the pizza. I devoured the appetizers and told them in breathless excitement about my plan to transform the Fed. The pizzas came out of the barbecue crispy and aromatic, with cheese melting over the side, and the sheer deliciousness broke through my dead appetite. I ate enough to make up for a week of starvation. All of a sudden, fueled by sleep and food and hope for the future, vitality had returned to my body and mind.

  “You saved my life,” I told Sim and Davida as they departed for the airport, and I meant it.

  They told me how incredibly moving the weekend had been. And they surely appreciated my sentiment. But they were doctors. They knew that saving my life was not in their power.

  “Brace yourself,” I said. “It’s the worst thing you can imagine.”

  “I can imagine some pretty terrible things,” my stepfather said, his face ashen and his eyes wide.

  “It’s worse than that,” I said.

  Rachael and I had driven down to my mother and stepfather’s house outside Los Angeles in order to break the news in person. My mom already knew something awful had happened: we had called them on the drive down and said they should leave work and meet us at home. A few minutes later she texted to ask for assurances that whatever news we were coming to share did not involve the health of Rachael, Carl, or me. We didn’t respond, so she had her answer.

  After we arrived, we took Carl inside and put him on a play mat. Mom went to the kitchen and brought out a tray of warm bourekas. (She was, after all, a Jewish mother.) I asked her to sit, took a bite of one of the savory, flaky pastries, and spat out the news. Jed, my stepfather, was in a state of disbelief. My mother was calm and composed. She had experience dealing with bad news. Her mother had died relatively young, she had nursed her father through his death, and she had lost a number of friends prematurely.

  It was from my mother that I had gotten my copious self-confidence. As an ambitious young woman in Communist Romania, she had studied hard, tested well, and then bribed and squeezed her way past the Iron Curtain into Israel, where she went to graduate school and met my father. “You can go to any college you want,” I remembered her telling me when I was young, just one of the countless times she had instilled in me the audacious notion that I could be the author of my own narrative, that my hustle and skill would steer me past the
cragged rocks of error and misfortune. For three decades she had been proven largely correct. But now I was bringing her an obstacle considerably larger than either of us had seen before. Not even master sailors had much experience navigating waters this rough.

  Jed called his son, Zach, a resident in radiation oncology. I got on the phone with Zach for a few minutes and he told me about a patient of his who had ALS and cancer and whose ALS seemed to respond very positively to stem cell interventions. My mother went outside and called one of her closest friends, a psychoanalyst. I understood the impulse to reach out for support, guidance, and perspective. These were things I craved, too.

  But I also craved distraction from my thoughts. ALS was already taking over my life, even though, physically, little had changed so far.

  Later that week, propelled by both the need to do something to occupy my mind and a newfound appreciation for how quickly my life’s clock was ticking, I drove with my father and Rachael to her office at UCSB and finally performed a task I had been meaning to do for nearly two years: washing the outside of her windows, which were caked with dirt from the live oak tree that stood above them and had become neglected due to budget cuts. Sitting on the frame of the window with my back hanging out over the ledge, reaching to scrub the glass clean, I felt for the first time in nearly a week the satisfaction of simple purpose and a mental focus on something other than ALS. For thirty, maybe even sixty, seconds in a row, my mind didn’t ruminate or rage about the fact that I was dying. I just felt normal, alive, again doing everyday tasks.

  Over the coming days and weeks, I would spend an enormous amount of mental energy seeking to re-create and expand upon that feeling. The diagnosis would not go away if I became more enraged at it, I told myself, and time was short. It was no good being angry and sad every hour of the day. Better to focus on good things.