tephen Wheeler was a manufacturing specialist by trade and a shy man by nature. He once told his daughter he’d always wished he’d kept a journal or written something to leave behind.
“But who wants to read that crap?” he told her.
Wheeler was diagnosed with non-small cell lung cancer in 2010, and died a year ago this month. Afterward, his wife, Beth, wrote to the administrators of an online patient community where he had been spending a lot of his time.
Weeks later, they sent her the transcripts of the discussions he’d participated in. There were 1,000 pages.
Some of Wheeler’s posts were whimsical. In others, he offered diplomatic intervention to defuse conflict. There were many throwaway pages, but some passages were as deeply felt as you might imagine from a man facing death, including one in which he lamented the tendency to say that patients “beat” cancer or “lost to” it.
They’re used with all good intentions, I think mainly to provide a sense of control that rarely if ever exists, but I think they deflate as often as they reinforce. Did somebody who died at 90 beat death while somebody who died at 70 didn’t?
Wheeler’s family knew he was on the site, Inspire, all the time, and they knew the depth of some of the connections he’d made.
What they didn’t know was the breadth of the affection he’d generated, and how he’d become a de facto leader of the community. More than a hundred people on the site signed up for alerts to his posts, while others sought his counsel privately or arranged to meet him and Beth during road trips.
When Beth read through her husband’s posts, she saw that whenever he didn’t write for a few days — when their treks took them out of WiFi range, for instance, or when he was too sick — other users fretted. They knew him by the username “Ex Rocker,” a nod to his long history as a guitar player.
If online communities like these can offer shelter, they can also come with shadows: persistent worry and, frequently enough, devastating news.
When Wheeler died and his obituary was posted online, the first tribute was offered by an anonymous writer:
“I never knew you. You didn’t know me. I read your posts on the Inspire forums and some of your words of wisdom will stay with me forever. Sometimes we never know what a difference we make in other people’s lives. I felt moved to write this so that your family and loved ones would know how very far your influence spread, and how you had changed lives. I have seen your photo now for the first time, and I know your name. Rest in peace Stephen Wheeler, Ex Rocker. And most of all, thank you.”
Many of the discussion threads to which Wheeler contributed remain active. Users who scroll back far enough will hear echoes of advice from him and others who have since died.
And current users will be reminded of how their presence, and the presence of earlier group members, helped support Wheeler.
To take but one moment: a January night last year, at 1:30 a.m., several hours after heart attack symptoms had chased the typically stoic Wheeler to the ER. False alarm, they said, and sent him home.
Wheeler clicked to the lung cancer survivors group and wrote about rising above cancer’s threats as much as possible, then finished with this: “Every time I come here I remind myself that by doing so … somebody (myself included) might feel just a little bit less alone.”
He was prolific on the site, but only after he died did Beth fully understand the impact his work might have on her own family.
She and her two daughters have spent hours leafing through the 1,000 pages, tagging them with Post-it notes. Reading Steve’s digital paper trail, Beth said, “rips you up and holds you together at the same time.”
Her daughters say his posts suffer none of the self-consciousness that can strangle autobiography, or the superficiality that often marks social media.
“His personality comes through in so many ways, it’s unbelievable how they capture him so completely,” said the eldest, 34-year-old Amanda. “I kind of have his voice, if that makes sense.”
Kate, 32, pointed out that grandchildren, should they come, will have his voice as well.
And for someone who didn’t feel as if he had left a legacy beyond his adored and adoring family and friends, Wheeler would have been pleased by the impact of his work on others, Beth said.
“He didn’t feel like he did as much for humanity as he might have liked, but through this, I think he felt he made a difference,” she said. “I think he knew that to a degree, but if he’d seen the outpouring from people after he died, it’d have bowled him over completely.
“So I can finally say, ‘Well, you did it. You made a difference.’ And that was good.”