The relationship between Eby and her followers can seem symbiotic, but it’s also not without complications: The hundreds of thousands of people who have become invested in Eby’s story have signed on to watch her fight a disease with no cure, some of them deriving inspiration from her feed while participating in the magical thinking that her health will improve. Eby has noticed that when she shares videos that break that spell, like a post showing her decreased lung capacity, some people comment that it’s becoming difficult to watch. “I can’t fault them for that,” she said. “I put myself on their screen, made them come into my life, and now I’m like: ‘Hey, bad news. I’m getting worse, as we knew I would, but no one wanted to believe it.’”
Without a medical breakthrough, Eby will eventually lose all physical function, including the ability to talk. If she continues to post to the end of her life, as she plans to, her followers will watch her die. And yet, they still follow along. A question even she can’t answer is, Why?
A Diagnosis and a Decision
The first signs of trouble were subtle: It was 2018, and Eby, then 29, was about to move to New York City from San Francisco when she felt a tightness in her left calf. Within months, she developed a weakness in her foot, and then enough of a limp that her work colleagues noticed while rushing to and from meetings in Manhattan. Eby consulted her sister, Sarah Eby, a physical medicine and rehabilitation doctor, who asked her to walk on her heels. While Eby’s right foot cooperated, her left foot dropped to the floor. “It was worrisome,” Sarah said. But even though Sarah sometimes works with A.L.S. patients, it didn’t cross her mind that her sister might have the disease. “I thought it was going to be something common and fixable,” she said.
Statistically, there was little reason to suspect A.L.S. In the United States, reports suggest that roughly 5,000 people are diagnosed with the disease each year, most of them ages 55 to 75. A.L.S. is also slightly more common in men than women. Eby was relatively young, and so her sister wondered if a pinched nerve in her back was to blame. She suggested that Eby get an M.R.I. The results were inconclusive.
For the next two years, Eby’s limp continued to worsen. One day at a SoulCycle class, her friend noticed she was struggling to stand on the bike. “My friend was looking over and he’s like, ‘You’re in terrible shape,’ and I’m like, ‘No, I just can’t.’ My left leg was not supporting me on the down push.”
