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.

Social Media-Fueled Activism

There was no Internet (Al Gore’s dial-up connection doesn’t count) back in 1989 when the Exxon Valdez oil spill took place. No Facebook page, no Twitter or YouTube … no email even. But somehow irate consumers spread the word about boycotting Exxon, and the message stuck, at least with me. There are no Exxon stations in eastern Kansas, but when I travel out of state I still go out of my way to avoid them. Sadly, Exxon doesn’t seem to have suffered much because of the boycott, but it wasn’t for lack of trying.

Now it’s a new millennium, and there’s a whole new oil spill to contend with—plus a new arsenal of tools for activists who want to teach big oil a lesson. I’d like to think the nearly 100,000 fans on the Boycott BP Facebook page will have more success in boycotting BP than we did with Exxon back in the 80s, but who knows whether fans will actually hold up their end of the bargain when it comes to putting gas in their tanks.

Even if Facebook fans let me down, I have my fingers crossed that social media users will do a more effective job of disseminating images of the spill, which should arouse a collective outcry from the public once it sees the oil-coated wildlife and decimated coast line. In the past few days I’ve seen a few pictures of pelicans pathetically trying to fly with their oil-covered wings that have made me want to cry. If it’s visual evidence people need to be pushed into joining the boycott, writing a letter or getting just plain fed up, I hope everybody along the coast with a camera is out there snapping pictures to share with the world.

Whether it’s the ubiquity of the messaging that strikes our collective consciences or the poignant pictures pouring onto the web, today’s activists have it made when it comes to organizing and getting their message out. I hope that 21 years from now we can look back on their efforts and say “yes, we truly made a difference.”

Do the social media merge

Do you ever click on the little Twitter definitions located right below your profile pic? I did today, and I got introduced to Brizzly, a cute little app (who doesn't love a a cartoon bear in a Twitter suit!) that combines Facebook and Twitter so you can toggle back and forth between the two.

Besides reducing your open windows by at least one, Brizzly has some other cool features that make it worth checking out. For one, you see entire URLs in your Twitter posts, rather than the shortened ones people use to stay below the 140 character limit. This is cool because it gives you a little better idea what you're clicking on and if indeed you really want to go there.

Photos and videos are viewable inline on Brizzly too, so there's no need to jump to another Twitpic window, etc. If you're like me and like to keep you open tabs down to a reasonable number, this is bound to be a feature you'll like.

One last cool Brizzly feature -- it has a direct message box that shows both parties IMs just like regular texting. I guess this means you can close your IM window too, as long as the person you want to text also happens to be on Brizzly ...