They haven’t experienced the way that people have reached out through Twitter, Facebook and blogs to comfort my family after the death Wednesday of my nephew Patrick. They haven’t experienced how his father, John, shared the story of Patrick’s final months on CaringBridge with hundreds of friends, family and caring people he’d never met.
Social media are just communication tools. They aren’t inherently good or bad, frivolous or serious. When my father, Patrick’s grandfather, battled prostate cancer 31 years ago, people used the communication tools of the day – telephones, greeting cards and stationery – to express their support and encouragement during the fight and their sympathy after it ended. Generations before that used telegraph, quill pens and other tools.
The tools had changed slightly 10 years ago when I underwent surgery for colon cancer. We used the telephone, email and my Des Moines Register column to tell people what was happening, and they sent their support by phone, letter, card and email. Now we’re using social media — Twitter, Facebook, CaringBridge, blogs.
Shortly after Patrick was diagnosed with acute myeloid leukemia last December, John started a CaringBridge site to share the news with family and friends. With candor and occasional humor, John shared the daily medical developments, along with tales of how Patrick battled boredom through hospital stays that seemed to never end and that resumed all too soon.
The site included photographs of Patrick playing football, wearing his Boy Scout uniform and sitting in Fenway Park watching the Red Sox play. John told in the journal of Patrick’s work on his Eagle Scout project. He had some ideas and plans for improving the amenities for parents spending nights with children at the Vermont hospital where his parents slept way too many nights. (Patrick wanted to interview me for the Communication merit badge when I visited last weekend, but he was too groggy from the medications. He spoke only a few words, sleeping most of the time and communicating mostly with a nod or shake of his head in response to my questions. Patrick was unable to finish work on his Eagle, but will posthumously receive the Spirit of Eagle award.)
We also learned through CaringBridge of the daunting array of drugs and treatments the doctors used to fight the leukemia. We learned how agonizing a bone-marrow transplant and the recovery process are. We learned that the preparation for the transplant essentially wiped out Patrick’s immune system, so he would be quarantined at home for months as his body restored his immunity. We learned about graft-vs.-host (GVH) disease, his body’s battle against the transplanted tissue.
We learned of Patrick’s humor throughout this fight for survival. When a bright blue chemotherapy IV turned his urine green, Patrick (a Milwaukee native who didn’t waver in his sports loyalties when he moved to Vermont) quipped that he had outdone the Packer fans who supposedly bleed green and gold. When doctors explaining options in a conference noted that no one likes to go to the hospital, Patrick shot back, “Doctors do.” We regularly read about his feisty banter with nurses.
In a CaringBridge guestbook, family, friends and strangers who had learned of his struggle poured out their hearts in more than 1,000 entries, promising their prayers and cheering on the young patient.
When we learned of the diagnosis last December, I had been using Twitter and Facebook increasingly as I tried to master the swiftly changing tools of communication, both for personal and professional interest. Most of my tweets and Facebook updates (I use an application to post most of my tweets to Facebook) are professional in nature, commenting on issues in journalism and the news business or live-tweeting conferences I attend. Most of the personal matters I shared for most of my time on Twitter were pretty trivial – whining about a late flight or banter with my wife or friends.
I was growing more comfortable with sharing more important personal matters on Twitter when Patrick was diagnosed. My first tweet about his leukemia brought more responses than any professional tweet I could recall – public tweets, private direct messages on Twitter, comments on Facebook, emails. I could see that people connect as profoundly using these communication tools as they did with other tools when Dad and I experienced cancer and the support that comes with it.
In February, I wrote a blog post about CaringBridge, asking my sister’s permission before posting it. I didn’t want to invade their privacy, even though I wasn’t using Patrick’s last name (it’s Devlin; here’s his obituary, published today). She encouraged me to post. CaringBridge had become an important part of their lives and they were glad to share the story.
I visited Patrick the weekend before he died. John said CaringBridge had been a blessing to the family, therapeutic for him to share his son’s story and a great time-saver to minimize the repetitive calls to multiple family members updating every development. We still emailed and talked by phone a lot through the months of Patrick’s treatment. But our calls went right to the point of comfort and how we could help. We’d already read the details, so Carol didn’t need to repeat them.
In late July, Carol did use the phone to share the most discouraging news: Tests showed cancer cells had returned to Patrick’s blood. CaringBridge went idle for a while, so Patrick could tell his best friends in person first. For some things, face-to-face is the best communication if you can meet in person, phone if you can’t.
For those of us who couldn’t be in Vermont, John’s daily updates on CaringBridge the final weeks became agonizing, but always necessary, to read. GVH was causing severe nausea and Patrick’s weight dropped swiftly, causing his final hospitalization.
Wednesday, 9/9/09, I posted the news on Twitter and Facebook that Patrick’s struggle had ended. I noticed that the first three direct messages I received, all touching and heartfelt, were from people I had never met, people who knew Patrick only through my tweets. As the responses continued, more “strangers” sent sincere sympathy, just as pen pals would have a generation or two ago. A woman I won’t meet until November shared a moving passage of poetry that required two tweets. Dozens assured me we were in their prayers. My first boss in the news business posted a tweet that was a prayer.
After I wrote the first draft of this on the airplane Thursday, but before I posted, Tim McGuire blogged about how my tweets made him feel connected to this 16-year-old boy he had never met. I was never more pleased to be scooped.
John’s simple, eloquent account of his son’s death was probably similar to handwritten notes by other grieving parents who have suffered this most heartbreaking loss through the years. But John had to write it only once and shared it with hundreds:
“Pat has taught us patience, perseverance, grit, and done it with grace and a style all his own. This morning brought more serious and ultimately untreatable complications. At a little after 3 this afternoon we had the medical team take him off life-support and let him slip away. It was just Carol and me with him — as we began. It was quiet and peaceful. After so much struggling, the calm was really amazing.”
Just like teen-agers can seemingly waste time with pointless phone calls that seem to never end and spammers can fill up our email and post-office boxes with trash, social media content can be frivolous and trivial. But a phone call can touch the heart and a letter can be a treasure to tuck away in a drawer to save and reread. In the same way, I will always treasure the love I felt this week, and the past nine months, through Twitter, Facebook, this blog and Tim McGuire’s blog.
And I know Patrick and his family cherished the loving arms that reached out through CaringBridge.