Aaron Winborn was diagnosed with Amyotrophic Lateral Sclerosis, or ALS, a condition in which his bodily faculties faded as his mind continued to sing.
For four years he struggled with muscle weakness and atrophy, loss of movement and speech, and a partial loss of ability to spontaneously open his eyes. ALS affected the part of Aaron’s brain related to auditory language processing, resulting in a loss of ability to understand spoken language or music. He could feel hugs, and I treasure this thought.
It’s hard to think about Aaron with words like weakness or loss. I feel him, vibrant even now, and maybe the vividness with which I remember his strength has to do with the way I disappeared from his life after his diagnosis. Kelly, a close mutual friend, would update me with news about Aaron’s family and how he was doing. I felt afraid to reach out to Aaron directly. I had a love letter of gratitude to him pouring through my mind, but I resisted writing it because I didn’t know how to reckon with the truth of what he and his family were going through.
When I turned 16, I left Chapel Hill High and helped form a progressive school called the School in the Community. Many Northside neighborhood leaders helped found the School in the Community, including the late Hank Anderson. Our classes were scattered at sites like Hargraves Community Center, Al’s Garage, the ArtsCenter, the Ackland, and Seeds of Sheba Cultural Center.
Aaron, then a young teacher, could dialogue about ideas for days – math, open source development, liberatory education, how to live, how to build a society, and what happens when we die. He would press books into our hands, students trying to hold fast to a love of learning, books like Thomas Paine’s “Rights of Man,” Edwin Abbott’s “Flatland” and Elisabeth Kübler Ross’s “On Death and Dying.”
In his youth, Aaron lived with and studied the work of Kübler Ross, the psychiatrist who derived the stages of grief: denial, anger, bargaining, depression, and acceptance. Aaron was fascinated by death like someone wildly in love with life. He was the most gregarious type of nerd, wonderstruck about people and the world around us. Aaron exuded intelligence in a way that invited his students to expect endless more of themselves.
Our experimental school closed after two years, but my fondness for my dear teacher and friend remained strong. Aaron married his beloved Gwen and they moved together to Connecticut where Aaron would begin his work with the Sudbury Valley Schools, legendary free schools that our School in the Community were modeled on (along with the University of the Streets in New York’s Lower East Side). They moved to Harrisburg where Sabina was born in the spring of 2010. Together they raised their young daughters Ashlin and Sabina on freedom and curiosity. In Harrisburg, Aaron worked as a Drupal programmer from home. Ashlin enrolled at the Circle school – another Sudbury school she still attends – and Gwen worked and started going to school part-time for social work. Aaron's first ALS symptoms began by Christmas 2010 and his official diagnosis came in March 2011 right before Sabina's first birthday.
Aaron had no trouble processing written language, so that was his only form of communication – writing or typing to him. Even after Aaron was locked into his body he continued to write: “I hope that my life stands testimony to the resilience of the human spirit, which cannot be killed, even when the mind is trapped in a body unable to lift a single finger in protest. And that even in a world that at times seems harsh and uncaring, that the same spirit grows ever stronger, vigilant against the injustices in the world, ever watchful for the joys it can bring to its fellow man, ever hungry for the simple pleasures to be found in life.”
In March of this year, at the point when communication had become nearly impossible, Aaron made the decision to end his present suffering and to cryogenically preserve his body, with a wish to be revived at a future time when there is a cure for ALS. I find myself in awe of his lifelong command of human sovereignty, the choice to be wakeful and the analogous choice to sleep. It took too long to shape words around my love for my friend and teacher. I have trouble making sense of how to name the nature of his departure and I ache with the loss. I wonder how many of us migrate through the world longing so much to express gratitude but find ourselves stuck.
In a way, Aaron’s public letter of departure to family and friends that he shared a few days before he died offered a pathway for traversing the imagined distance in such moments.
“It's not a matter of dying, so much as a process of living,” he wrote. “I can't stress that enough.
“When I lived with Elisabeth Kubler-Ross some 27 years ago, I thought it odd that so many people would send her butterflies. I don’t mean literal butterflies, but rather drawings and stuffed cushions shaped like butterflies, many of which were created by terminally ill patients,” he continued. “I used to think that they symbolized the notion of life after death. But now I've come to the conclusion that they actually represented the idea of life before death. This is an important distinction, one that I feel fortunate to have made before my end. Thus the personal mantra that I've had these past few months that goes something like, “6 more beautiful days, and today is the most beautiful yet.”
Readers may write to Manju Rajendran via The Chapel Hill News at firstname.lastname@example.org