Saturday, May 25, 2013

The social side of serious illness

I originally published this blog in December 2010. In light of my renewed interest in blogging, online marketing and all things digital, I'm giving it a second life.

There was a time, not so long ago, when terminal illness was a personal thing. If you had cancer the people close to you knew – your family, your coworkers, your friends, your church – but the knowledge stopped there, close to your inner circle. Now, with Facebook and Twitter, everyone’s life is an open book – and that includes their cancer. The question is, does social media make it easier or more difficult to deal with terminal illness?

This question has special poignancy to me because of a little girl I never ever met. Her name was Lucy, and she was diagnosed earlier this year with a rare form of brain cancer. She and her sister attended the child care center where my daughter works, which is how I came to know about her story. All through the summer and fall the family kept everyone who wanted to follow Lucy’s progress updated via something called The Caring Bridge, which I think is basically a blog set up by the hospital where Lucy was being treated. Through ups and downs, progress and setbacks, the family kept everyone apprised of Lucy’s condition.

While the family blogged and cared for their daughters, the community around Lucy grew. Team Lucy – made up of everyone from Lucy’s immediate family to complete strangers like me – participated in Kansas City’s Head for the Cure 5K last summer. A smaller group joined the Lawrence, KS version of the same 5K. More recently, my daughter and I attended a fundraiser for Lucy at Hamburger Mary’s. It was bingo night, and all the proceeds from the evening went toward Lucy’s skyrocketing medical bills. I was happy to give what little I could and grateful that I’d never had to hold a similar fundraiser for any of my children.

I guess all of these walks and fundraisers could have happened without Facebook and the blog, but I don’t think they would have had as big a response. The details the family posted online made everyone feel like they were part of the team rooting for that little girl, and the more dire her situation became it seemed like everyone fought even harder for a happy ending.

Sadly, Lucy lost her battle with cancer the weekend before Thanksgiving. The family is still posting their story online, albeit with much less frequency now. I guess it’s hard to let go of that grassroots community that sprung up around their little girl. Maybe some of the relationships they’ve forged will live on in her memory. I know my daughter will never forget Lucy, and even though I never met her, neither will I.

Not everyone can or wants to make their battle with cancer as public as Lucy’s family did, but I guess at least in this instance, social media helped a family cope with their grief.

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