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This might be part one in a series titled Death in the Age of Facebook, about which I have a fair amount to say.  But let’s start with this:

Positive thinking does not cure cancer. A good attitude will not help you survive.

It’s a lovely idea, of course, one that makes us feel like we have a tiny bit of control over our destinies. Be strong, keep your chin up, and this too shall pass. Only that’s not true. And not only is it not true, but it’s harmful and hurtful to those who don’t survive, those whose cancers simply can’t be beat with a smile and a sunny outlook.

Look at the language we use around cancer: This person “succumbed” to the disease, while that other one “overcame” it. Patients are warriors fighting a battle that requires strength and courage, a willingness to charge forward and face any challenge, no matter how terrifying and no matter how futile.

There is a lot about Facebook and social media that is wonderful when you’re faced with a crisis. You’re able to connect with others who’ve experienced what you’re going through, you’re able to share information in an honest and direct way with large numbers of people, and you’re able to draw strength and love from the strength and love of those around you. The online response, even if it’s just the click of a Like button, can be overwhelming and heart warming. It’s a sign of the invisible thread that ties us all together, caring about one another, wishing each other well.

But it also gives us a glimpse into how differently people handle the tragedies that befall us, tragedies like death sentences for five-year olds. Now, I know these are treacherous waters to wade through, that no one truly has the right words, that no one can take away the pain and suffering of the family, no matter how badly they may want to. And I know that any of us might say the wrong thing at the wrong time, in a misguided attempt to be helpful.

But one thing that I wish no family would have to bear is the idea that they should “keep their heads held high” and not “give up.” As if they themselves, their grief and their despair, are somehow responsible for their lack of options. Sometimes, as horrid as it is, there simply are no options. Or no good options at least. Now I’m not saying give up; I believe in holding on to hope until the very last second. But be sad. Let your head hang down and cry when you need to because this is devastating. There is no “chin up” attitude that can bolster a family faced with this reality, no “rah rah” mentality that can keep death at bay.

Although I sure as hell wish there was.

 

 

September is Childhood Cancer Awareness Month. Which unfortunately does not result in the blanket of pink ribbons you’ll see next month for Breast Cancer Awareness Month. Nothing against breast cancer awareness, of course, but how many of you even knew that gold was the color for childhood cancers?  Not many, I bet, because I didn’t know it myself until quite recently.

But if you’re already a member of this small world of pediatric cancer families, you know that there are a lot of events taking place in an effort to raise awareness and further research. The President issued a lovely proclamation last week which not only recognized those children (and families) currently in the fight but also the lifelong health consequences of treatment for those who’ve survived.

And I’m excited to announce that our sweet Austin was featured today on the Facebook page of The St. Baldrick’s Foundation as part of their month-long campaign to put a face to this disease.  I’m not sure if you can see it if you’re not on Facebook (I know you’re out there, you non-Facebookers) but here’s the link.  It’ll only be up for a few days so please “Like” St. Baldrick’s page (everyone should like St. Baldrick’s, Facebook or not) and check it out.

And maybe someday, we’ll all associate gold ribbons with childhood cancer. Or maybe someday, we’ll actually cure this dang thing and we won’t have to have Childhood Cancer Awareness Month at all (except in history class!). Wouldn’t that be nice?

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February 2020
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