Yesterday, May 12, 2022, my mom would have been 93 years old. Peggy and I were on the National Mall with Lefty and Righty planting 6,000 flags to honor people living with ALS, and people who have passed away from ALS. Each flag bore a name and a date of diagnosis.
A strong breeze caused the flags to flicker and buzz across the hillside, like thousands of plastic whirligigs on sticks. To make it a bit easier to locate a name, the flags were loosely organized, alphabetically, in rows by first name. Honestly, I was hesitant to look for my flag. I was not at all sure how it would feel to see my name among all the others with ALS.
I walked the rows like a gardener inspecting Spring seedlings. I saw Jims, and Jimmys, and Jimmies, and Jameses. Row upon row upon row, I walked silently, sometimes kneeling for a closer look.
When I came upon my flag, with my name, and my age, I felt a surprising affirmation in my chest. I felt solemn, and connected. I sensed that I was among new kin. I felt whole and at peace.
An hour later, my son William and I addressed the assembled gathering. We chose a call to action as our offering. “The voices and stories of people effected by ALS will be the driving force of progress. Our activism, our ‘good trouble’ will be our hope together.”
Many of yesterday’s speakers had very little voice left due to the advancing muscle weakness from ALS. We leaned in to decipher their words which were often too soft or garbled to fully understand. As you might imagine, wheel chairs of all shapes and sizes cruised among the ambulatory. Children darted in and out, and our dog Delta Mae stole the show, making her way into dozens of pictures. Everyone wanted a selfie with Delta.
The day was also full of tears. ALS, after all, is steeped in loss. Loss of function. Loss of dignity and autonomy. Loss of futures. And, eventually loss of loved ones. People wept for themselves, for their families, and for those they have lost. People cried tears of rage and frustration. They cried for each other.
And, in the space of hours, Peggy and I connected with people from all over the country who are at every stage along the ALS journey. We hugged people whom we have only known via zoom. We thanked people for their inspiration and their courage. They hugged us back and they meant it.
This event was equal parts rally and reunion. Speaker after speaker remarked that this small group, who shared an intimate knowledge of the ALS journey, had become a kind of family for them. Folks who were farther along the path welcomed those of us who were new to the journey. In that way, it felt like an equal part church.
Bryan Stevenson often sums up his public lectures with a call for greater proximity to injustice. He rightly surmises that those with proximity to the problem have the best hope for an authentic, meaningful solution. By analogy, the closer the proximity, the truer the response.
Tears, it occurs to me, are a true manifestation of authentic proximity. So are the spontaneous hugs that hold you close, belying social custom.