The issue of awareness

Note: this is an “op-ed” piece. I shouldn’t have to state that this is MY opinion on what is a blog that chronicles MY opinion, but I know this might offend some people in the cancer community. Nevertheless, here goes:

Everybody – and I mean EVERYBODY – knows that kids get cancer. So there. Awareness is not an issue. People are MORE than AWARE. They might not understand that the symbol for Childhood Cancer is the Gold Ribbon, but even if they did, I don’t think it would change anything. Besides, seeing how over-played the Pink Ribbon (which EVERYONE knows stands for breast cancer) has become, I’m not sure that the Gold Ribbon should be displayed on everything from underwear to soup to toothpaste. I’m pretty confident that the Susan G Komen foundation pays through the nose for their ribbon to be emblazoned on every product, and if the Gold Ribbon were to follow suit, I think it would become yet another symbol for people to ignore. Besides, Gold Ribbon families simply don’t have the money to buy awareness. We’re all broke.

I used to be one of those activists, one who met with members of congress trying to get them to support our cause. I’ve been told everything from “we already support cancer research” (which, unfortunately, gives very little to childhood cancer research) or, my personal favorite line uttered by a Congressional Aide, “Until someone famous gets this disease and backs it, I expect very little will change.”

So, under this premise, should I be praying for one of the Kardashian kids to get cancer? That would get people’s attention, right? Maybe someone would care then? However, I wouldn’t wish cancer on anyone… not even a Kardashian. But I bet they’d come out with a killer line of chemo backpacks. Kids getting cancer is pretty sad but why not make it fashionable? Yes, I’m being sarcastic, but this is what our world has come to. We care more about what those reality star dim wits are doing than we do about our neighbors, who are simply trying to survive.

I’ve been “listening” more than posting on Facebook recently, and it’s filled with two camps right now: people doing the Ice Bucket Challenge and people bitching about the Ice Bucket Challenge. Personally, I think it is a brilliant campaign. It has raised lots of money for ALS. That is TRULY phenomenal. But, what has made it successful is that it appeals to people showing others their personal piece of it. Look at me dumping ice on my head! And then there are those who are tired of seeing it and take the time to complain about it. Okay. Sorry to bother you. But THIS IS WHAT HAPPENS WHENEVER ANYONE TRIES TO RAISE AWARENESS! People turn their backs or complain about it or  shut down altogether.

The beauty of Facebook – and why so many people are addicted to it – is that it appeals to our vanity. It’s about me. It’s about you. Keeping everyone up-to-date on what I had for dinner or how bad my head hurts or a picture of me getting a pedicure. It’s my own personal Reality TV, except I’m keeping up with people I actually care about instead of the freaking Kardashians. Don’t get me wrong, I LOVE FACEBOOK. And I love to keep up with my friends. And I love to keep you up-to-date on what’s happening with me. I’ve “met” a lot of great people here and it has kept me from falling off the cliff more times than I can count. In fact, I was at the mall the other day and someone came up to me and said, “You’re Ben’s mom, aren’t you?” She told me that she’s been following Ben’s journey on Facebook and reading my blog for a while now… I was overcome with JOY that someone would take the time to come over to me and let me know that they care about my son. It was truly heartwarming.

But back to the ALS campaign, many people in the pediatric cancer community are trying to think of something similar in hopes that it would go viral. I really hope we can be more original than jumping on another organization’s bandwagon. If we start sending videos of us smashing pies in our faces or sucking on lemons or doing any number of things to try to get people’s attention, I honestly think it will make us look foolish. I know this is going to piss some people off and I’M SORRY for any offense, but let’s think of something else. People are tired of the pink ribbon, so why promote our gold ribbon? People are getting tired of the Ice Bucket challenge, so why try something in a similar vein? I don’t know what the answer is and I don’t have any grand ideas, but please, let’s find something that will excite people, not make them groan, roll their eyes, and turn their backs. We already have enough resistance to overcome.

For now, I’m taking a personal approach. I’m using Facebook. Ben has his own page dedicated to him and his journey. I keep most of his medical stuff separate from my personal page. My blog has a lot about Ben on it but it’s not solely about him. I can talk about whatever I want to here. But his Facebook page is 100% him. And anyone who “likes” his page can keep up with what’s going on. I try to make an impact there… showing videos about what he’s going through. Posting pictures of the hell he endures. I just changed the “cover photo” on his page to reflect the 10 years of torture he’s been through… it’s my own way to raise awareness. It might be directed at a very small group of 2K+ people, but it’s making an impact. He gets new followers every day. I don’t expect our plight to go viral but I’m doing my part in letting people know how bad this sucks.

There are some amazing people out there who are doing incredible things for pediatric cancer. Running hundreds of miles. Baking cookies and cakes. Cutting their hair. Starting foundations. Marching on Washington. There is no doubt that our cause is way underfunded and pushed under the rug. But stop being pissed at the Empire State Building for not “Going Gold.” They don’t wanna support us, they’ve made it clear, so we’ll bang on someone else’s door. We can’t make people pay attention. But that doesn’t mean we shouldn’t try a different outlet. I think it’s fruitless, however, to keep hitting those who don’t want to listen over the head with it.

Trust me. They’re aware. They know that kids get cancer. And either it is simply too sad or too painful or hits too close to home. Or maybe they just care more about the Kardashians. Their choice. Heck, I have some extended family and friends who refuse to read my blog or discuss Ben’s issues because they just can’t handle it. I can’t make them. So, I’ll tell the readers of my blog and those who follow Ben’s page. I get my message out to as many people who will listen. And if those supporters want to give money to our cause, that’s fantastic.

But we can’t make them listen. And that’s not our fault. It’s not for a lack of trying.

So, let me leave you with this excerpt from the all-time comedy classic, The Jerk.

Hobart: Sir, there are charity people here to see you.

Navin R. Johnson: What? Send them away. There are plenty of people more deserving than me!

Hobart: But these people want *you* to give, sir.

And then he meets with a shyster disguised as a Priest soliciting funds for *GASP* Cat Juggling. As he views the 8mm film of a man juggling cats, Navin says: “Good Lord – I’ve heard about this – cat juggling! Stop! Stop! Stop it! Stop it! Stop it! Father, could there be a God that would let this happen?”

He proceeds to get out his checkbook and write a number with lots of zeros.

We – the Pediatric Cancer Community – need a Navin R. Johnson to come to our rescue. Our salvation ain’t in the Empire State Building. Or anyone affiliated with the Pink Ribbon. Or usurping the Ice Bucket Challenge. I wish I had the answer. And I wish I had the energy to fight the bigger battle besides the one I battle with my son.

I guess the best advice I have is to keep sharing our stories. And, unfortunately, there’s no lack of heart wrenching stories to share.



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