THE BODY ISSUE
The week of April 26, 2015

What my friend Aaron Winborn taught me about living and dying

By Jesse Hicks

I met Aaron Winborn on a sunny summer day in 2013, at his ranch-style home in a grassy, tree-lined neighborhood in Harrisburg, Penn. It was early afternoon; a Friday. Two years earlier, Aaron, then 43, had been diagnosed with amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disease for which there is no known cure. As ALS progressed, motor neurons in Aaron’s body died off; in the final stages of the disease, he would likely be completely paralyzed, able to communicate only by moving his eyes.

The life expectancy of an ALS patient is two to five years from the time of diagnosis; Aaron was heading into his third year. He’d opened his home to me, and I sat on the couch in his hardwood-floored living room, across from him, his power wheelchair rolled back from a pair of computer monitors. One screen showed his software development work; the other, his Facebook account. His wife, Gwen, sat down next to him.

His hands and arms were paralyzed. He wore a neck brace beneath his slender face; his hair was light gray. A tube ran from his side, part of the BiPAP machine that ended in a mask over his nose and did most of his breathing for him.

His eyes were lively, and he watched me intently. He’d begun to suffer from receptive aphasia, a cognitive impairment that makes it impossible to understand spoken language. He could grasp some words, but he also watched me closely to read my lips. Sometimes after a question, he’d glance at his wife and she’d repeat it, looking directly at him. I cringed every time it happened, feeling guilty for making him work harder, for pulling her away from her life, and for intruding on theirs.

But Aaron never showed disinterest in our conversation, or that it annoyed him. He spoke carefully, deliberately, his words freighted with a nasal weight by his breathing mask—yet he apologized for being, he said, “quite expository.” Behind him, a large picture window looked out on his sun-dappled front yard, a trio of red oak trees, and the lazy street beyond.

• • •

I’d found Aaron while researching cryonics, where people have their dead bodies frozen and stored indefinitely in the hope that one day they’ll be returned to life—cured of “death” thanks to future medical advances. In August 2012, a 23-year-old neuroscience student named Kim Suozzi posted to the r/atheism subreddit, saying a highly aggressive type of brain cancer had left her only months to live. She’d first asked Reddit how to spend her remaining time, then for help raising the funds for cryonic preservation. She couldn’t afford it—the procedure can cost between $30,000 and $80,000, depending where it’s done—and didn’t have the life insurance many cryonicists use as payment. “I’m far from convinced,” she wrote, “but I would rather take the chance with preservation than rot in the ground or get cremated.” The hope of cryopreservation, she wrote, would bring her some peace.

With the help of Reddit, a nonprofit cryonics advocacy and support group called the Society for Venturism, and the Alcor Life Extension Foundation, one of the country’s two largest cryonics facilities, Kim got her wish. Her fundraising project made the media rounds and caught Aaron’s attention. He’d long thought about cryonics, but like Kim hadn’t purchased life insurance. He contacted the Society for Venturism, which agreed to begin a charity campaign on his behalf. Soon after, Kim emailed an offer to help him, but by the end of 2012 her health had deteriorated too far. She moved to Arizona to be near the Alcor facility, and in January 2013, she died and was cryopreserved.

“I’m far from convinced, but I would rather take the chance with preservation than rot in the ground or get cremated.”

By the time we met in Harrisburg that summer, Aaron and I had emailed for several months. My obvious if unwritten question for him was: Why cryonics? I’d read about other cryonicists, but their cases seemed to put the question at an arm’s-length remove. It struck me as a comforting abstraction—and reading The Prospect of Immortality, one of cryonics’ foundational texts (and an exceedingly strange book) only made the idea seem more like a kind of secular religion, in which the dead would pass through a trial of ice and be resurrected in paradise. And death shall have no dominion.

I thought it had to be different for Aaron. Perhaps the question was the same, but the stakes had been raised. Or maybe the question would feel more grounded in reality, the answer less like something out of a pulp sci-fi novel. Cryonics was only a lens with which to focus on the deeper question: How do you face your imminent end, and how do you summon hope that there may be an escape?

It turned out Aaron had some experience thinking about that, even before his diagnosis. As a 19-year-old he’d worked with Elisabeth Kübler-Ross, the Swiss-American psychiatrist whose book On Death and Dying introduced her theory on the five stages of grief and who created the hospice movement. His job didn’t last long; the two didn’t get along, he told me later. “If you were dying, she was a saint,” he said. “She would be at your bedside until you died, but if you were alive, she had no interest in you.”

He didn’t write much about cryonics, or ALS, or his present condition—and I didn’t ask. I asked about his past, and he responded with stories from his formative years. He told me how his dad was a seeker after capital-T Truth, and how that had led his dad through Rosicrucianism and a stint in the John Birch Society before he became a priest in the Mormon church. He abandoned that to become an astrologer with the National Council for Geocosmic Research, then gave up on organized religion and became a druid. He told me about growing up poor and moving around a lot, and fleeing to England with only $40 in his pocket.

There was a screen between us, and I peered into it, wondering if I might catch a glimpse of him through that big picture window.

The emails came sporadically, and once he apologized that he “ended up getting involved with real life for a few days,” before dropping back into his story. He wrote around 9 or 10pm, I imagine after his wife and two young daughters went to bed. He always closed his notes with “Stay strong,” followed by his name.

• • •

After a number of missteps, I wrote my story about cryonics. It included Aaron but, I felt, did not do justice to him. It felt superficial; I was frustrated that I’d skimmed the surface rather than sounding the fathoms.

Aaron would appear sometimes in my Facebook feed, or I’d see that he had posted a new blog entry. I saw he did two AMA’s after our interview, and I thought of him again when the ice bucket challenge began making the rounds. I emailed him a couple times but didn’t get a response. My messages had gone to his spam purgatory before; I knew that if he’d been able to respond, given the necessities of “real life,” he would have. I didn’t feel he owed me anything, and maybe I felt I’d let him down by not telling his story with the depth I thought it deserved.

Then, in a hostel in Honolulu, I was idly scrolling through my Facebook feed on my phone. Among the usual flow of trivia, I saw Aaron’s face and his name. His post began:

Farewell, all my friends, old and new. I have decided to “pull the plug” on March 24. I have to say that these past 47 years have been a grand adventure, and it is bittersweet to see it end. It will be quick and painless, and I am at peace with my decision. I am sad that I’m leaving my family. Though these words don’t adequately express my feelings, they’re the best I have.

I don’t know how to describe my reaction other than as an inward gasp. My breath stopped and my lungs felt as though they’d been squeezed tight in my chest. Aaron had told me he’d have to make this choice, between here and whatever comes next. He had made his choice, and six days later he would see it out.

I didn’t know what his impact was; maybe I still don’t. But he is remembered.

His post was short, filled with gratitude and compassion. Whatever incongruity existed between the message and its appearance amidst Facebook’s ever-refreshing newsfeed was erased by Aaron’s sincerity. He concluded:

Finally, I would like to speak a little about the process of dying as I’ve experienced it these past four years. First off, it’s not a matter of dying, so much as a process of living.

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.

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 which 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.”

Even if we haven’t had the pleasure of meeting, I want to affirm how influential you have been in my life. I love life dearly, in all its forms. Thank you for indulging me these few, precious minutes.

At 12:30pm on March 24, 2015, by choice, he died. He was promptly prepared for cryopreservation, and his body now waits in stasis at the Cryonics Institute, just northeast of Detroit, Mich.

• • •

It’s strange now to think how many artifacts I can recover relating to Aaron. He’s scattered across the Web, in code he contributed to the Drupal open-source CMS (and in a community award), in his Reddit AMAs, in his advocacy for cryonics and push for more ALS research. His Facebook wall has become a memorial, a space where people from all these parts of his life can come together.

My breath stopped and my lungs felt as though they’d been squeezed tight in my chest.

I had a hard time writing about him, partly because I didn’t feel allowed to write about someone I barely knew but who managed to make an impact on me. I didn’t know what that impact was; maybe I still don’t. But he is remembered. I have my notes from our interview, written in red ink on a yellow legal pad.

And when I went looking for his address, I found it. I pulled up Google Street view and suddenly I was in front of his house again, feeling too nervous to step inside. But this time there was a screen between us, and I peered into it, wondering if I might catch a glimpse of him through that big picture window. I looked and I don’t know whether I could see him there, through the glass darkly, beyond the blurry reflection of a Google Street View car.

I wrote to him from a now-defunct email address. When I knew I’d no longer have access to that account, I forwarded my most important emails; Aaron’s was among them. I archived the entire mailbox, then, months later, unintentionally deleted the archive. So from aaron@winborn.org I now have a single, slender thread that I forwarded to myself. Through some vagary of the email systems involved, it’s truncated, cut as neatly as you’d expect of Atropos, Aaron’s words halted mid-sentence:

I mean here I was, a devout Mormon, unwavering in his belief of a personal deity, and here were two people whom I loved and respected, and they didn’t even believe in God! I mean, imagine

[Message clipped]

 

I mean, imagine.

I think he would have liked that.

 

Illustration by Max Fleishman