On September 30, 2016, Rachael and I celebrated one year of marriage and 11 years together by booking a hotel room in Los Angeles and going out for fancy Asian fusion. It was our first night away from our 4-month-old son, Carl. Rachael had a great new job as an English professor in Santa Barbara. My career as a progressive activist was going gangbusters. We had just bought a beautiful house and could see decades of happiness stretching out ahead of us. We were the luckiest people we knew.
The next morning, we had brunch with my oldest friend, a first-year medical resident. I mentioned to her that my left hand was feeling weak, and after playing with it for a few minutes, she told me I needed to see a neurologist.
The following Friday, at the ripe old age of 32, I was given my death sentence: The doctor told me I had ALS—amyotrophic lateral sclerosis—which would rapidly destroy all the connections between my brain and my muscles, leading to complete paralysis and death, likely in three to four years.
Three weeks later, our world was turned upside down a second time, when America elected a racist kleptocrat to the White House.
Like many people suddenly confronted with agonizing loss, I looked for answers in Buddhism. Pema Chödrön teaches us that when the ground disappears beneath your feet, the solution is not to flail around in a desperate attempt to find a handhold; it is to accept the law of gravity and find peace despite your velocity. Leave the mode of doing and enter the mode of being. Accept things as they are, rather than yearning for them to be otherwise.
Such radical acceptance is in tension with my identity as a movement builder. Activism is precisely about not accepting the tragedies of this world, but rather on insisting that we can reduce pain and prolong life. Social justice means creating a stable floor beneath our feet and then putting a safety net under that, to catch us if it suddenly vanishes: universal health insurance, affordable housing, unemployment benefits. Being part of a progressive political movement is about fighting back and building toward a better future. “Acceptance” is not part of our vocabulary.
The theologian Reinhold Niebuhr—whose most famous disciple, Dr. Martin Luther King Jr., would become the patron saint of American organizers—sought to resolve this tension in his Serenity Prayer: asking for the serenity to accept what cannot be changed, the courage to change what can be, and the wisdom to know the difference.
I have tried to internalize this worldview. I am no longer ruffled by quotidian nonsense, or even by the onset of new symptoms, such as when, earlier this month, I stopped being able to feed myself. I have come to accept that my ALS is progressing faster than average, that my body is wasting away quickly, and that what I have today will soon be gone. But there is one thing that still overwhelms me: when I imagine the future life of Rachael and Carl, who is now 2. The weekend hikes, the afternoons on the basketball court, the evenings playing backgammon and doing homework, the mornings eating breakfast and laughing about the latest absurdity emanating from Washington, DC—these are the moments that I picture spending with them in an alternate universe. When this mental exercise brings me to tears, as it always does, I try to be at peace in my sorrow. But it is not easy.