S

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.

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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.

01-24-2015 5:19AM
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.”

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  • Great story, thank you. The amount of time, information, support and value that patients share online is extraordinary. Health will advance much faster as more patients join online forums for their illnesses, triggering factors, genetic variants, and more. Medical research and clinical practice might advance faster is it paid attention to this rich patient experience.

  • Stephen’s story is a testimony to the kindness and thoughtfulness that so many patients bring to on-line forums. They are a voice of light, encouragement, comfort and, when needed, sometimes offer a needed kick in the pants to inspire patients to take action. For the past 24 years, I’ve run the largest online community dedicated to bladder and pelvic pain. We’ve provided support to millions of patients over the years and through it all, there are always patients like Stephen, who see the suffering of others and who offer comfort and solace. It becomes their calling, their purpose and yes, for many, a legacy that can least for years. I speak of my co-founder Diane Manhattan, who worked tirelessly to help others often in the wee hours of the night despite her own pain and discomfort. We lost Diane 13 years ago and her (and stephen’s) legacy will love in. We are blessed to have known them… and even more blessed when we can find purpose in our suffering.

  • Stephen’s story sounds a lot like that of my late wife Karen.

    I do not believe that Karen understood how many people she was helping. Perhaps if she did she would not have taken her own life due to Chronic Pain.

    After her death I gathered her 9,437 Facebook posts and emails in turned it into Karen’s Journal. A book that she did not know she was writing. It is now required reading at Duke School of Medicine to educate future doctors on the realities of Chronic Pain and excruciating headache caused by Intracranial Hypotension due to Cerebrospinal Fluid (CSF) Leaks. A condition that is more common that many think (for example Actor George Clooney had/has a CSF Leak and considered suicide), yet is so unknown that some doctors argue the condition does not even exist.

    “Karen’s first-hand account of her illness gave an honest, heart-wrenching depiction of what it is like to live with debilitating pain day-to-day.” – The Derrick Newspaper front page story. Which may be found at kpaddock dot org. Details of Karen’s saga are found at kpaddock dot com .

    Karen has and still is, inspiring people to run marathons and more importantly search for things that will help those with CSF Leaks such as better MRI technology, ways of monitoring CSF Pressure etc.

    We will never fully know the results of the live’s touched and helped by people like Stephen and Karen, yet we know they will continue to do so even if they are no longer here with with us any longer.

  • Great article! Social media was and remains a powerful tool for so many. It is a way for us to communicate, share information and provide support. As a result of my experience as a digital journalist, nurse, patient advocate, I found Social Media a friend when I was sick. It helped me stay connected. To give patients and caregivers a place to go, I created Caring for the Caregiver. Here is a link. https://www.facebook.com/groups/355750674782283

    I hope we have people like Steven visit the time to share their voice and inspire others!

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