Political activist Ady Barkan is fighting for social justice even as he fights ALS.
I will never forget those eyebrows. “Larry” (a pseudonym) had a piercing gaze and communicated by moving his eyebrows. Larry was a patient in the hospice program in which I serve as a chaplain. Larry was an advertising executive and a writer. He was a loving husband, father, son, and brother. And Larry had amyotrophic lateral sclerosis, ALS, or Lou Gehrig’s disease. It is a terminal neurological illness. By the time I met Larry for the first time in his home in 2017 he already could not speak with with his natural voice. He used the Tobii Dyanvox device that allowed him to type words or select phrases by looking at a computer screen. A synthesized voice would then “say” the words from a speaker. He sat in a special wheelchair and required 24-hour care. Over the next two years I visited Larry many times and found we had much in common. He was a Jewish man about my age. Like me, he grew up in the Chicago area. We discovered we had several mutual friends. His arms and legs were emaciated and paralyzed, but those eyes and eyebrows! They were full of life.
Larry fought to engage in this world and experience life to the fullest extent that he could. Over the next two years he published a children’s book as well as several articles in Jewish newspapers chronicling his experience with ALS. When I visited him, we talked about his recent works. He told me he had once played guitar in a rock band, something he missed terribly, and we listened to his favorite classic hard rock hits. We listened to Jewish songs. We prayed. We sat together in silence. Larry died in May, 2019. I felt the loss personally and was very sad. I lost not only a patient but a friend.
Around the same time that I got to know Larry I became aware of another young Jewish man with ALS. His name is Ady Barkan, a 35-year-old lawyer and political activist. Ady graduated from Columbia University and Yale Law School. He clerked for a Federal Judge. His wife Rachael is a professor of English and they have a three-year-old son Carl and a baby on the way. Ady, who holds dual American and Israeli citizenship, was on last year’s Forward 50 list of the fifty most important Jews in America. He is a galvanizing political organizer.
Ady was diagnosed with ALS in 2016. He has since lost use of his legs, arms and back muscles. Recordings of his public speaking over the last few years document the decline of his voice until he had to start using the computerized synthetic voice that he, like Larry, operates by typing words with his eyes. Last month he had a tracheostomy so that he could breathe with a ventilator. He now requires 24-hour care. Comparing photos and video of Ady now with those at the start of his illness reveal substantial weight loss and physical decline.
And yet, Ady still channels his razor-sharp mind, keen media savvy and iron-clad will to call for justice, particularly for universal health-care. Ady recently published a memoir, Eyes to the Wind: A Memoir of Love and Death, Hope and Resistance. He articulates his vision for many political issues; however, at the heart of his book is his confrontation with his mortality.
While much of Ady’s progressive advocacy work resonates for me personally, my interest on Yom Kippur is to reflect on Ady’s courage in confronting his illness. He makes poignant expression of his existential crisis as his illness progressed and he developed one symptom, then another, then another. Ady describes the emotional trauma of the illness and the psychological and spiritual guidance that he sought. He started going to therapy and received guidance in meditation from different spiritual traditions. He writes that the wisdom he received for dealing with pain and tragedy is not to escape or ignore these difficulties. Rather, the goal is to become comfortable and accepting of them. Citing another author, Ady writes, “When the ground is pulled out from under your feet—when you find yourself in free fall—it is a mistake to flail wildly in search of a handhold; instead, you can find peace by accepting your velocity and the fundamental instability, unpredictability, and impermanence of our world. Everything falls apart. That is the nature of things. Enlightenment requires us to accept impermanence rather than rage against it.” Ady reflects further: “The key to enjoying the time that I had left would be to accept life’s impermanence, accept the tragedy, and find comfort even when there was no ground under my feet.”
The psycho-spiritual guidance that Ady received—to be in the present—posed for him a great dilemma. After all, he is a political activist. Everything he does is about not accepting the status quo and demanding change. Ady writes: “Activism and politics were precisely about not accepting the tragedies of the world, about insisting that we could reduce pain and prolong life. Social justice meant creating a stable floor beneath our feet and then putting a safety net under that, to catch us if it suddenly vanished: universal health insurance, affordable housing, unemployment benefits (or, even better, a guaranteed good job) . . . Being part of a progressive political movement was precisely about fighting back and building toward a better future. Accepting was not part of our vocabulary.” Ady’s memoir grows out of this basic tension between accepting the present and fighting for a better future.
Sylvia Boorstein pithily encapsulates Ady’s tension in the title of her book, Don’t Just Do Something, Sit There. Boorstein is a Brooklyn-born Jewish writer and speaker who is credited with popularizing Buddhist wisdom in the West. In a light-hearted way, a cartoon expresses the existential tension of Ady Barkan through Boorstein’s clever turn of phrase.
Boorstein comments: “What makes the cartoon funny is that that old guy IS doing something. He is fuming! He is mad! He is just holding it in rather than shouting it out, and clearly, it cannot be good for him. I think the phrase needs notation, like music, to let the reader know where the accent goes: Don’t JUST do something (i.e. impulsively respond) — Think It Over!…[I]t is valuable to be still for long enough to figure out what would be the most helpful thing to do.”
The wisdom expressed by Sylvia Boorstein and discovered by Ady Barkan has deep roots in Jewish tradition. In particular, Un’tane Tokef, a central prayer of the High Holidays, forces us to confront the tension between “sitting there” and acknowledging our mortality, on the one hand, and “doing something” to ease suffering of the other.
Un’tane Tokef lays bare our fragility and mortality. The poet writes:
בְּרֹאשׁ הַשָּׁנָה יִכָּתֵבוּן, וּבְיוֹם צוֹם כִּפּוּר יֵחָתֵמוּן. כַּמָּה יַעַבְרוּן, וְכַמָּה יִבָּרֵאוּן, מִי יִחְיֶה, וּמִי יָמוּת, מִי בְקִצּוֹ, וּמִי לֹא בְּקִצּוֹ, מִי בָאֵשׁ וּמִי בַמַּיִם,
On Rosh Hashanah the judgments will be written down And on Yom Kippur they will be sealed: How many will pass on and how many will be created, Who will live and who will die, Who at their end and who not at their end, Who by fire and who by water…
And on it goes through multiple scenarios of how we might meet our demise.
Rabbi Sharon Brous (Who by Fire, Who by Water: Un’taneh Tokef (Prayers of Awe)). Turner Publishing Company. Kindle Edition.) comments on the harrowing starkness of this poem. She writes: “Many of us struggle to overcome the terror of death through avoidance and repression…But our tradition compels us to recognize that afar anachnu, “All we are is dust” (Psalm 103:14)—the end is inescapable.” Rabbi Brous reflects further: “The centrality of Un’taneh Tokef in the liturgy of Rosh Hashanah and Yom Kippur reflects the Rabbis’ understanding that an awareness of our deep vulnerability is the very essence of the religious and spiritual life. ‘Life changes fast. Life changes in an instant.’ There’s simply no time for denial or escapism.”
In other words, we’re called to “sit there” and reflect on our limitations as humans.
However, once we accept our mortality, we are then able to look forward. As the prayer reaches its climax, it calls on us to recommit ourselves to living a certain kind of life, or to “just do something”:
וּתְשׁוּבָה וּתְפִלָּה וּצְדָקָה מַעֲבִירִין אֶת רֹעַ הַגְּזֵרָה
But repentance, prayer and righteousness avert the severity of the decree.
Rabbi Brous teaches: “Our tradition, in all its wisdom, demands that we obliterate the false protective shelter and, knowing that each moment might be our last, fight for a life of meaning today. The High Holy Days force us to shift from denial of death to purposeful engagement with life.” Rabbi Brous notes, “We can’t dictate our fate. We can’t hide from death. But there are three things that we can do to bring meaning into the radical uncertainty of our lives” (Brous, p. 143)
First is T’shuvah (repentance): Rabbi Brous writes: “You don’t have to be a static, stagnant being, dwelling perpetually in the mistakes of years past. You can choose to make t’shuvah, affirming that life is dynamic and people change. Find the courage to ask for forgiveness from the people you have hurt. Find the strength to forgive those who have hurt you and the audacity to forgive yourself. Open your heart and embrace the people around you—most importantly those you most often take for granted. Hug your kids (and others dear to you).”
Second is T’fillah (prayer): Rabbi Brous teaches, “You don’t have to be alone. You are part of a story that is bigger than you, where the critical currency is God and the soul, not money, power, or celebrity. Let the majesty of nature distract you. Open your heart to pain. Let the world take your breath away. Connect to something beyond the physical, the tangible, the utterly graspable. Allow yourself not to understand and yet to appreciate anyway. Live in mystery.”
Finally, there’s Tz’dakah (charity): Rabbi Brous says, “Stop digging yourself further and further into your own dramas, as if the privileges of freedom and prosperity come with no responsibility to others. Open your eyes and give a damn! Let your heart break over illness, poverty, loss, and violence. Affirm the power of love! Bring healing and comfort! Stake your claim in the world!”
Rabbi Brous concludes: ”The challenge of the High Holy Days is to confront the radically unpredictable trajectory of our lives and live as if every single day truly might be our last.”
During the High Holidays we not only confront our mortality during the Un’tane Tokef prayer, but also during Yizkor, the memorial prayers we say for our departed loved ones. Yizkor is a profound experience of “Don’t JUST do something, sit there!” Technically, we stand during the prayer, but we are called upon to remember our departed. Through deep reflection, we take time out to engage with and validate the pain of their absence. We draw inspiration from the positive influence they had on us and pledge to ourselves to do our best to carry on their legacy. For some of us, we might also engage in the pain of broken relationships we had with our departed while they were alive and forgive ourselves for any repair that did not come about.
Ady Barkan, in a recently released series of online video interviews with several leading presidential candidates, describes to each of the candidates his own reflections on his legacy in making a difference in our world. He asks each candidate to reflect on the legacy he or she hopes to leave by the time they exit public life. In these tear-jerker conversations, Ady draws the candidates off of their talking points to reflect deeply on the meaning of life. He has them literally “sit there” in meaningful contemplation. This series of public reflections on mortality and legacy is by itself a tremendous gift that Ady has given us all.
Ady refers in his book to the “Serenity Prayer” by the great theologian Rheinhold Niebuhr, a friend and teacher of both Dr. Martin Luther King and Rabbi Abraham Joshua Heschel. The Serenity Prayer reflects Un’tane Tokef and asks for the serenity to accept what cannot be changed, the courage to change what can be, and the wisdom to know the difference. Ady embodies the spirit of those words, as did my late friend Larry.
During Yizkor, I plan to think about Larry and how in the grips of a devastating disease, he left behind a legacy of loving life. He stubbornly affirmed life to his last day through his books, his articles, his smiles and his eyebrow gestures. I will also reflect on how Ady Barkan, suffering from the same disease, is modeling a legacy that when we confront and accept our limited number of days, we increase our efforts to improve the world.
As we enter Yizkor, don’t JUST do something, sit there. Let us reflect on the legacy of our loved ones. Let us reflect on the legacy we seek to leave for ourselves, and let us return to purposeful action.
Rabbi Ed Bernstein 
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