Thursday, June 9, 2011

outraged. or annoyed. or just sad - the birth of a lie

Two days ago I saw a link on twitter about a 15 yo girl named Alice who has terminal cancer and who wanted, as a part of her bucket list, to have her name trend. Something about it tweaked with me, so I searched for 'Alice Bucket List' and found her blog.

It's poignant and sweet and heart-breaking. I cried a little - not a lot - life isn't fair. Good kids die of cancer. And families get shredded on the process. But I cried, a little. For her mom, who Alice clearly loves and looks up to. And for Alice being brave in her process of dying and sharing it. Talking about her friends, and what she will and won't be able to do with them now. Talking about her bucket list, and which items are already out of the question (visiting Kenya and to be a dolphin trainer among the 'no long possible' items). 

At first the Twitterverse was just sharing about Alice. But yesterday there was a shift. What had been just 'Alice has a bucket list' grew into a lie 'Alice wants to trend on Twitter.' It's an innocuous enough lie, as lies go. But the more I thought about it, the more angry I got. 

Alice hasn't asked anyone for anything. As a 15 year old with the ear of the world she could have been outrageous and would likely have gotten a response. But she wants simple, happy things - a photo shoot with her friends. To enter her golden lab in a dog show. To eat loads of chocolate at Cadbury World. The ONLY thing Alice asked of other people is that they register to be bone marrow donors. She clarified that she doesn't not have a paypal button because she doesn't want donations. And, her list never mentions twitter.

What outrages me is that people will mindlessly click a button to retweet 'Alice Bucket List,' Alice will trend on Twitter (it's already happened - there are even newspapers reporting 'the sensation') and then people will pat themselves on the back for 'making a difference for a dying girl.'

You've made NO difference! It's just so typical that people want the good feeling of making a difference without any effort at all. You're tweeting anyway! It has cost you no time, no effort, and certainly no thought. 

I'm not saying I'm much better. After reading Alice's blog I did some research into what it takes to be a bone marrow donor in Canada. I've thought of it before, when Shiney's mom first became ill, but backed down. But it's an onerous process. It takes effort. It requires more than sitting at my computer and clicking a button. But, fueled by my annoyance, I've started the process. 

I can't save Alice's life. I can't spare her parents, and her friends, and her lab Mabel what they will go through in the next few months ... and for the rest of their lives. But I'll be damned if retweeting a lie is going to make me feel better about myself. 


  1. Damn. I was one of those who mindlessly retweeted something that had George Strombolopolous' name attached.

    I totally feel your rage. Unfortunately I can't be a bone marrow donor -- nor can I donate blood -- due to the Mad Cow scare from the UK in the 80s.

    But, I see this armchair activism all the time and it makes me crazy. Thanks for posting about both your anger and your solution.

  2. Thanks, Cheryl. And I'm certainly not immune to mindless jumping on on things ... but this really got to me. We can all do better, I think.

  3. I just had a bone marrow transplant that saved my life. It isn't that hard to get tested to be a donor. It is only a swab in the mouth, and most people never get called on to give. The giving process is like an IV. My sister said that it wasn't so bad, and she saved my life.


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