by Ady Barkan
But turning that apparently simple goal into reality was nearly impossible, particularly since every interaction and observation held reminders of what I was losing: How many more times would I get to see this ocean view? To eat this delicious pad see ew?
At first, I could hardly bear to spend time with Carl. He was so happy and beautiful and innocent. My illness and death transformed each bit of joy into sadness—because that joy had suddenly become fleeting and limited. The more pleasure Carl gave me now, the more I had to lose. Every time he laughed or cooed or craned his neck during tummy time like Jurassic Park’s baby velociraptors emerging from their shells, all I could think of was the tragedy of what he and I were losing: years and decades of games and conversations and kisses, of silly jokes and delicious meals, of camping trips in California’s majestic parks and adventures on unfamiliar streets across the globe. Who would teach him how to box out or use a drop step on the low post? Who would talk to him about the triumphs and the tragedies of LBJ? Or show him how to turn a few unlucky opening rolls in backgammon into a miraculous backgame that would bewilder and infuriate his opponents?
More important, who would be there to listen when he’d had a tough day in seventh grade? Or to hold him when his grandmother died? Or to counsel him when he landed his first job interview and had no idea what to do?
The answer to these questions, I told myself, was that he might not even like basketball and that there were many better coaches than me—that many historians and gamers and tour guides could teach these and other lessons in my stead. And his mother and family members and friends would give him all of the support and love that he deserved. But I knew that although this answer was entirely correct, it was also entirely unsatisfactory. Because nobody could replace a boy’s absent father.
There was, therefore, no way to ask these questions without becoming overwhelmed. And yet there seemed to be no way to interact with my baby and keep such questions out of my head.
Even performing discrete and constrained tasks was emotionally wrenching. Reading innocent books to Carl at bedtime became an exercise in self-abuse. “ ‘Little Guy runs away so fast Little Guy’s daddy has to run like anything just to catch that baby up,’ ” I heard my voice saying. But my mind was focused on tragic questions: Will I ever get to run after my little guy? Will I even live to see him run?
Within a year I would learn the answer to those questions: No. And yes.
Cedars-Sinai Medical Center in Los Angeles is one of the leading institutions for ALS research in the country, and so it was there I went, five days after my initial diagnosis—along with a small entourage including Rachael, my father (who had arrived the previous day from New York), my mother, and Katy—to get a second opinion and discuss treatment options. I would be seeing Dr. Bob Baloh, whom I had been told was Southern California’s leading ALS doctor. Coincidentally, Katy had studied under Baloh for a few weeks during medical school.
Cedars-Sinai, like other top ALS institutions, coordinated a comprehensive once-a-week clinic during which patients could see the full battery of experts in one visit: neurologist, pulmonologist, physical and occupational therapists, nutritionist, psychologist, and others. The model was intended both to provide people with comprehensive care and to facilitate research into therapies and treatments. Because ALS is a fast-moving disease with few treatment options, researchers had a hard time convincing patients to rigorously monitor their symptoms and rate of decline; the lack of good data on the course of the disease made it even more difficult to develop and evaluate effective therapies. Therefore the clinics tried to build ongoing relationships with patients in the hope that they would stick with the monitoring and evaluation.
In the clinic, they took my weight and height: 165 pounds, five feet ten inches. I once again had my muscles and reflexes tested. My mother was holding out hope that perhaps the hinterland Santa Barbara doctor had gotten my diagnosis wrong; I refused to indulge such a fantasy. When the resident subtly pointed out the hyperreflexia in my foot to a medical student, I tried to embrace my newfound role as a guinea pig and educational resource. Dr. Baloh confirmed the diagnosis, and my mother couldn’t stop the tears from rolling down her cheeks. As with Dr. DaSilva, I asked whether he had ever had a patient as young as I was; yes, he said, he’d even seen teenagers with the disease. I asked him how long people my age and in my condition could expect to live. Unlike most doctors, Baloh was willing to reveal the ugly statistics: three to four years. Anything more was possible but unlikely.
He spent an hour with us, explaining the disease, discussing the lack of meaningful treatment options, and answering my father’s queries about clinical trials. The nutritionist told me to eat a lot. The psychologist and fellow talked with Rachael and me about coping and depression and hope. The physical therapist didn’t have much to offer: I was still in pretty good shape, able to walk on my heels down the hallway, and balance on one foot without any difficulty.
By the time we made it back to Santa Barbara that evening, I was preoccupied with a new question: How fast would my disease progress? Some patients live many years: Stephen Hawking, the most celebrated and exceptional example, lived for more than fifty years after the onset of his disease. Others die within months. Where would I fall on that spectrum?
I began a constant series of silent and informal tests and assessments. Was it harder for me to carry a coffee mug in my left hand this morning than it had been yesterday or last week? Did my left foot feel more awkward when jogging? Suddenly every twitch and fumble was a sign of decline.
As I lay in bed the next afternoon, I realized that the twitching that had started in my left arm had spread not just to my right arm but also to my belly. This was a disaster. Twitching, I had learned, was a sign that muscles were not receiving regular and sufficient communication from the central nervous system. They were essentially requests for instruction and information. ALS killed by destroying the diaphragm’s ability to expand and make the lungs breathe; if the motor neurons leading to my torso were starting to die off already, I didn’t have long.
I called Dr. Baloh’s office in a panic, asking what this meant for my future. Through an aide he conveyed to me that the twitching did not necessarily mean muscle loss would follow. We couldn’t draw any conclusions from this development. Although I took some solace in his message, it was limited: the twitching was obviously related to the spread of the disease, even if the correlation between twitching and muscle loss was less than one. Fuck.
I called my father into my bedroom and told him about this new symptom. He looked at my belly. It didn’t look like it was twitching to him—just like I was breathing and my belly was jiggling a little bit when I did. What was actually happening to my body? And what did that mean about what would happen to my body in the future? We didn’t know the answers to anything, yet my fear was settling upon answers whether they were true or not.
What we did know, however, was that we had to take our lives one day at a time. We couldn’t see much further than that anymore. While we had previously made our plans in years and decades, Rachael and I were now limited to thinking in terms of weeks and months. We decided that we would finally—and immediately—take that trip to the majestic national parks of Utah that we had been discussing for years. We invited people over for a big election night party in early November. And we chose to keep our plans to travel east for Thanksgiving to introduce Carl to the extended family. But that was as far as we could plan.
My diagnosis hit Rachael hard, as it would any wife. Her entire future was upended, her fulfilled life shattered. Like me, she had her bouts of despair and grief. But, unlike me, she now knew that she had to be the rock for our family. Sitting in the living room, watching Carl play, I became overwhelmed and infuriated. Rachael comforted me and reminded me of our mantras: “We haven’t lost each other yet. Let’s focus on how cute Carl is and on what we have left.” Breathe, she would tell me time and time again. Stay active. Stay in this moment.
When you’re diagnosed with a terminal illness, you spend a lot of time reflecting on your life and the choices you’ve made and the unfathomable predicament you find yourself in. As a white man who had been the beneficiary of a racist and classist society—and who had devoted himself to eliminating the very systems of oppression he had benefited from—I had to grapple with the paradox of my privilege and my misfortune.
Ten days earlier, when Rachael and I had celebrated our eleven years together, I felt like we had reached the mountaintop: we knew nobody who seemed happier or luckier. But now, so soon after that, we had fallen from grace. Nobody I knew was facing an untreatable terminal illness in their thirties. Did I know anybody who had died this young? There was one kindhearted giant on my high school track and field team who had been killed in Iraq, but that was it.
I thought of Rachael’s colleague who lived across the country from his wife and children and commuted every couple of weeks. I thought of my friends who were unlucky in love, unhappy at work, or depressed. I used to pity them all and sometimes even wondered how they got up in the morning. Now I wished my problems could be as easy as theirs.
But I also knew that my field of vision was severely limited. I didn’t know people who had died young simply because upper-middle-class white folks in the United States didn’t die very often of opioid overdoses or gun violence or foreign combat. Poor people did. Black and brown people did.
And we lived in a country that was segregated by race and class. Most of the people I interacted with were relatively well-off, highly educated, and white. And that was true even though I worked at a diverse nonprofit organization advocating for marginalized people.
And, of course, if I widened my vision more broadly, my story ceased to become such a tragic outlier. In other parts of the world, people died young every day as a matter of course. They died from malaria, from malnutrition, from war; they died from domestic abuse and car accidents, from earthquakes and tsunamis and fires.
It was this recognition—of my privilege and my place in the world—that I tried to remember in those difficult first days and months, taking pains to put my suffering in context. A few days after my diagnosis, I sent seven close friends this email:
My dear dear friends,
I was really excited to see some of you this week in Berkeley at the Universities Allied for Essential Medicines meeting. But I have some absolutely devastating personal news.
On Friday I was diagnosed with ALS.
It is outrageous, incomprehensible, devastating, and depressing. I was so looking forward to the next 50 years living my perfect life with Rachael, Carl, our friends and family, and my amazing job in paradisiacal Santa Barbara. There was so much beautiful life to live.
I’m going to Cedars-Sinai tomorrow to meet with the top-notch clinicians there; we’ll see what is possible in terms of treatment and research. Maybe there is some hope for prolonging life, and maybe a miracle will come over the horizon very soon. But it’s a devastating and very negative diagnosis. One in 50,000 people in the US gets this disease, and our average age is 55. So I definitely drew an unlucky hand this round.
But the truth is I’ve had an amazing hand so far in life. Compared to the billions in abject poverty, the tens of millions killed in war, the untold number who aren’t happy, I’ve been very lucky. So rather than bemoan “Why me?”—which I certainly have the urge to do almost every moment—I want to be happy and energized and squeeze every last drop out of what I’ve got left.
So I am now moving full steam ahead, trying to seize these last few months/years and live them to the fullest—including being with Rachael and Carl and friends and family, doing some beautiful things, and trying to see a big victory in the Fed Up campaign.
I would love to see you soon, if you can come down for a day or two or three. Also, we’re gonna host an election night party, since it’s looking like it’ll be a great night for our country and the world. And then I wanna have a big-bash celebration for everyone whom I love in NYC on the weekend of December 3/4. I would love to have you all there.
I will need to depend on you and others to support me through this. And then, most important of all, I need you to be here for Rachael and Carl, now and for a long long time in the future. She loves you all so, so much.
I am so deeply grateful to each of you for what you have given me, how you have taught and inspired me and made me laugh and love.
Ady
Two weeks after my diagnosis, Rachael and I tried to make good on that desire to carpe the diem. We packed up all of Carl’s many essentials and flew to Salt Lake City so that we could finally take that long-discussed trip to Utah’s famed national parks. My college buddy Jeremy put down his dissertation in progress, flew in from Philly, and was waiting for us near our gate. Rachael’s younger sister, Lucy, a graduate student in psychology at Stanford, met us outside of baggage claim. Then Ciel, a Utah native and Rachael’s best friend from college, rolled up in an enormous black GMC Yukon. She would be our chaperone for the week.
Jeremy and I held hands as we walked in Capitol Reef National Park; every fifty yards, the gentle path turned to reveal a sublime new vista, with soaring cliffs and playful shadows in the late-afternoon sun. The ratio of incredible views to physical effort was better than any other hike I had been on in my life. But never before had I cried so much on vacation.
Rachael urged me to be like Carl. Stay in the moment. Look at the rocks and the colors. They have been here for so long. Millennia worth of humans have been born and died here, admiring these formations. Eons worth of reptiles and dinosaurs. We are made of stars and we return to dust in the blink of an eye. Our civilizations will fall. But these rocks will remain.
Afterward, as we drove across the vast expanse, the day and our vacation coming to an end, the gray-blue sky opened up and the rain pattered down on our civilian tank. I plugged in my iPhone and turned on my new favorite album, Lost in the Dream, an immersive, lyrical, layered, and iterative meditation on disappointment and loneliness by the Philadelphia band The War on Drugs. We looked. We listened. We felt ourselves looking and listening.
A cold wind blowing. Lost inside our heads. We didn’t know what lay ahead. But home we would go. And set our eyes to the wind.
CHAPTER TWO
AWAKENING
In the spring of my senior year at Columbia University, having been accepted into law school and bored with my studies, I began following my friend Simeon to the evening meetings of a radical student group called Students for Environmental and Economic Justice. For a couple of years they had been unsuccessfully trying to convince the administration of our wealthy, liberal university to ensure that the workers who made the university-branded apparel (in the sweatshops of Southeast Asia) were paid a living wage and had safe working conditions. The university had already adopted policies requiring reasonable labor standards, but those standards were being ignored. So, in coordination with activists at other schools, we were trying to establish effective enforcement mechanisms.
The students of SEEJ had made polite requests of the administration, written op-eds in the school paper, and tried various other gentle pressure tactics. But the university had a well-developed playbook for dealing with such annoyances: Make sympathetic noises in private, promise to consider the issue, stall and delay, and wait until the handful of committed student leaders graduate or get distracted with other pursuits. Graduation was indeed approaching and we weren’t quite sure what to do.
After I recounted our predicament to my father one evening, he nonchalantly suggested that we occupy the administration building to get our point across. I took the recommendation back to the group. Over the course of a middle-of-the-night strategy session, we debated the merits of the idea.
Some of the other students, particularly the women, were worried about the consequences of occupying the Low Memorial Library, the administration’s headquarters, which had been the site of the famous 1968 uprising, when students occupied buildings to protest the university’s connection to the Vietnam War and its relationship with the black community in Harlem. So, budding law student that I was, I walked the group through a reading of the university’s disciplinary policies. They had good reason to be worried: our planned infraction seemed to subject us to suspension or perhaps expulsion. But I cavalierly dismissed their concerns and assured them—baselessly—that the administration would never impose such a harsh penalty.
“I think we need to break up into gender caucuses,” Davida said. She was a fierce and principled activist, and Simeon’s girlfriend of eighteen months. I had no idea what she was talking about, but I suddenly found myself in the hallway with Sim and a couple of other dudes.
“Why did we get kicked out?” I asked him aggressively.
“I think they just wanted some time to consider these issues calmly,” he said.
I was flabbergasted by the notion that I had prevented such calm consideration, and when Davida came out a few minutes later to invite us back in, one of the other alpha males and I petulantly told her that we needed a few more minutes to ourselves. I was still processing the novel idea that gender could play a role in the dynamics of group decision-making and that maybe I shouldn’t treat the conversation like a debate tournament. Sim and Davida led our group through patient deliberation, and by about midnight we had a critical mass of women and men who were ready to take action.