Thank You, HONY!

Brandon Stanton is a stranger to me, but should I ever be lucky enough to meet this man, I would have met an honest to goodness hero with a heart of gold.  Those are all ridiculous cliches of course, and yet, where Brandon is concerned, they are simply descriptors.

He is the young man behind Humans of New York, that Facebook juggernaut of a page where you go when you need a lift.  He uses his camera to not only capture humanity, but inspire humanity.  We need Brandon right now.  All of us.

Less than three weeks ago, I learned, when my Facebook feed started blowing up, that Brandon was committing HONY to a fundraiser for the pediatric cancer patients at Memorial Sloan Kettering Cancer Center.  This is a place where dozens of children I know have been treated for their disease.  I started weeping with the realization that his lens would be trained on pediatric cancer and what a powerful force that would be.

I have used storytelling as a tool to gain awareness of and create advocates for pediatric cancer since 2011 when I first wrote Donna’s Cancer Story.  My hope and belief was that if people knew a child with cancer, they would care and want to help.  Despite the incidence of childhood cancer being on the rise and despite cancer being the number one disease killer of children in America, it is woefully underfunded.  People within the community know the truth, that, in many respects, our kids are invisible.

That is a painful truth.

With HONY using its massive reach and Brandon’s empathic lens, his gift for making us see things we never saw before, pediatric cancer just found its new BFF.

There was a thrill on my page, an excitement, a current of hope that I have never felt before.  People would see our kids, know their stories, perhaps, even care.  $3.8 million dollars and two weeks later, Lordy, does it feel good to be seen.

When you live with childhood cancer, when you are caring for a child with cancer, the isolation, the despair, the loneliness, the fear, all those things become your life.  You feel broken and marked and different than those around you.  I have often felt grateful that the years we cared for Donna during her cancer treatments, social media was not yet a part of my life.  The pain of seeing other thriving children while your own is experiencing something so horrendous has to be like a low level of constant torture that gives you a zing every time you log on.

HONY put our children (and, yes, somehow every child with cancer feels like one of my own) front and center.  And they were ready for their close-up.

As the mother of a daughter who died of cancer, I am immensely grateful.  I connected with so many of the stories he brought to us.  It was enlightening to have a window into what it is like to be a doctor to these kiddos, to willingly go to work day-in and day-out, knowing your entire patient base would die, despite your best efforts.  To see the fear in a parent’s eyes, a fear I know well.  To hear, in the words of a child, what something as unruly as cancer living in your body might feel like. To see a woman on a bench talk about her dead child and to cry with her, as I still grieve my own.

I use words to help people connect, encourage them to feel.  Brandon uses photos.  He nailed it.

If you haven’t already done so, please head over to Humans of New York.  Allow yourself to get to know a child living with cancer, a nurse who administers chemo, a surgeon who says a prayer that his patient might wake up from their anesthesia, a researcher who keeps researching despite not finding a single answer, a mom who misses her son.  Looks like donations are still open, too.  You can give (even $1 helps) HERE.

HONY, thank you, from the bottom of my broken heart, for seeing us.  Thank you for helping others see us, too.  We needed you so much more than you will ever know or realize.  You are a gift.

 

Some Thoughts About Clickbaiting

“Clickbaiting” is a verb, right?  This week, for the first time in the history of my blog, I used some hardcore clickbait for attention writing a post I titled, “Why Does Mark Zuckerberg Hate Kids with Cancer?”  For those of you who are in the dark, clickbait is defined as, “(on the Internet) content, especially that of a sensational or provocative nature, whose main purpose is to attract attention and draw visitors to a particular web page.”

IT WORKED.

Just as I was hoping it would, that preposterous title attracted a lot of attention, most of it warm and supportive, some of it downright mean and ugly.  It didn’t go viral, as I had dared to dream it might, but it did generate significantly more play and traction than a typical post would.  Most importantly, in the immediate 36 hours after it was posted, over $3,500 in donations rolled in to St. Baldrick’s in support of research for pediatric cancer.

Having been an undergrad psych major, those dollars right there are what is called “negative reinforcement.”  The other numbers were pretty intoxicating, too. Typical status updates linking to our St. Baldrick’s event were generating a reach of between 300-500 people out of 28K subscribers.  My clickbait post had a reach of just under 125K people.  It also brought me over 160 new page followers, though, to be fair, I lost a few, too (eleven).  I engaged in what I myself consider to be negative behavior, and yet, was rewarded for it.  That makes it much more likely for me to engage in that same type of negative behavior again.  Except, I won’t.  Clickbait is not cool, despite the fact that it works.

My post was born out of a place of fatigue and frustration, not childish entitlement, as a few gals accused me of.  Zuckerberg treats my blog page like a business, despite it not being a business.  I don’t sell ads, I don’t have any sponsored content.  Ever.  I don’t financially gain, in any way, from having a blog Facebook page.  I never have and I doubt I ever will.  I simply don’t have the “dynamo” factor that some of my blogging colleagues do.  I salute them, but they are not me.

The top image is an ad for Facebook that, ironically, appeared on top of my page the day I posted my clickbait.  As it shows, Facebook clearly thinks of MTM as a business needing and wanting to advertise.  Nope.  Wrong on both counts.  On the lower image, you can see just one exchange.  Sadly, I lost my cool with this gal and took her bait.  I'm not proud of that.  She went on to criticize me further and personally mock my grief, then she herself deleted the exchange.  Good riddance!
The top image is an ad for Facebook that, ironically, appeared on top of my page the day I posted my clickbait. As it shows, Facebook clearly thinks of MTM as a business needing and wanting to advertise. Nope. Wrong on both counts. On the lower image, you can see just one exchange. Sadly, I lost my cool with this gal and took her bait. I’m not proud of that. She went on to criticize me further and personally mock my grief, then she herself deleted the exchange. Good riddance!

And, to be clear, it makes me sad and disheartened and cynical to know that I could have more readers any time I wanted, just by playing a game that Zuckerberg himself encourages.  I choose not to because it’s not my jam.  I grew up hearing my father say, “Be the bigger person” in response to times you have been wronged or challenged.  I try.  Most days I succeed, some days I fail.

While I am not ashamed of my clickbait post, it’s not something I would ever rely on.  I value you readers too damn much for that.  So, rest assured, those of you who have been with me for more than a post or two, more clickbait is not on my horizon.

That said, it is very clear to me by the level of outreach from other cancer bloggers, cancer fundraisers, and parents of children who run support pages on Facebook that there is a universal feeling of taking a hit in numbers and exposure on Facebook in recent months.  A child with cancer using Facebook to notify friends and family is not a business, though the Facebook algorithms treat that child as a for profit tycoon, asking him or her to pay for supporters to see status updates.

I have some sort of social justice gene embedded deep in my DNA that will always make me root for the underdog.  If Zuckerberg has a literal army of programmers at his beck and call, which he does, the man should be able to distinguish between for profit businesses, fundraising campaigns, bloggers, and support pages for people with illnesses.  It’s sort of like that age old question, “Why can we send people to the moon, but not make pantyhose that don’t run?”  The answer is the same for both, because business.

And to those of you who disagreed with my post, I hear ya.  And, to a certain extent, I don’t disagree, which, I think, was apparent in my original post.  The fact that my numbers and donated dollars rose exponentially is only evidence of the reality that clickbait works, though, and with the prospect of raising $3,500K for pediatric cancer research, well, yes, I would do it all over again.

What I won’t tolerate or stand for, though, are the cabal of mean girls that drop down from the sky to mock me personally, mock my grief, call me names like childish, selfish, entitled, “on the rag,” narcissistic, whiny, self-involved, and other personal attacks.  And how is attacking me different than me attacking Zuck?  Very different, for a few reasons:  1) Zuck will never see my post; 2) I clearly state in my post how and why I utilized clickbait in my title — to criticize his business practice.

When a commenter comes to my page, its a pretty clear bet that I see everything that is posted, and that it is intended for me, personally, to see it.  Secondly, referring to a grieving mother trying to advocate for more funds for research as whiny, entitled, or a cry baby is just beyond my comprehension.  To lash out at me and suggest that I am hurting Zuckerberg’s feelings is just plain silly.

Grateful thanks to those of you who understand what I do and why I do it, even if you don’t always agree with the how.  I promise not to abuse your trust and make clickbait part of my regular blogging repertoire.  Even us earnest bloggers have moments of weakness.  Friday’s clickbait was one of mine.  xox, MTM

Why Does Mark Zuckerberg Hate Kids with Cancer?

You may consider this blog post click bait, and, let me tell you, you wouldn’t be wrong.  I am desperate at this point, and not beyond employing a little click bait.

Do I really think Mark Zuckerberg hates kids with cancer?  No, probably not.  I mean, he’d have to be some sort of a monster, right?  And yet . . . and yet.

In a few days time I am hosting our fifth annual St. Baldrick’s shave event to help raise money for research focused on pediatric cancer.  Yesterday I shared a link to the event, encouraging donations.  328 people saw that post.  328 people out of the 28,000+ that follow my Mary Tyler Mom Facebook page.  Each time I have shared the event, less than 500 subscribers have seen the link.

Thanks, Zuck.

That happens sometimes, more and more these days.  The Facebook algorithms are a mystery to me.  Actually, it’s not a mystery at all.  Zuck wants me to pay for subscribers to see my things.  He hasn’t unilaterally shut me down.  Yesterday I mused that if I had another child I would name that child Wren.  Pure nonsense. Lots of folks saw that silly status, over 10K, in fact.

Five years of shaving events have netted over $400K for research specific to childhood cancer through the Donna’s Good Things campaign for St. Baldrick’s — much of that raised via the Internet through readers and supporters of my daughter Donna after having read her story, via Facebook, of course.  But it is a different world on Facebook these days.  Much different than when I first told and shared Donna’s story five years ago.

Here’s the truth:  I will never pay to share things via Facebook.  I just won’t.  I have no guarantee that, if I did pony up my dollars, the shares would be within the 28K subscribers I have.  They could be from Joe Schmoe who doesn’t give a fig that I had a daughter named Donna and that she died of cancer.  They could be going to the assholes who make memes featuring my girl as a suffering child from stolen photos — memes that whenever are reported to me I immediately report to Facebook asking for their removal, but without success.

Zuck and Donna
My daughter, Donna, in a photo that has been stolen numerous times and reported to Facebook with no success next to Mark Zuckerberg in a photo I stole of him. Will he ask me to take it down? Let’s see . . .

Truth is, I am tired.  I am tired of asking people to care about childhood cancer.  I am tired of the kids I see in my feeds who are relapsing, and dying because the science hasn’t yet caught up with their overachieving cancer cells.  I am tired of trying to educate folks that our federal government doesn’t fund research for pediatric cancer, nor does private pharma, because it is considered so very rare.  This, despite cancer being the number one disease killer of children in America.  This despite the fact that a child is diagnosed with cancer ever three minutes.  I am just plain tired.

And, somehow, it is easier for me to come to my keyboard and bang out my frustrations than to do anything else today.  My friends tell me to migrate to Instagram or Twitter.  Others tell me the exact opposite.  I don’t know.  My frustration and fatigue are catching up with me.

WAH.

Okay.  Sometimes you just need to whine it out, know what I mean?  Today I need to whine and kvetch and complain.  It runs a number on me to perpetually ask folks to remember my daughter who died of cancer.  To remind folks that while my daughter is dead, many, many other kids are still living with their cancers or are on the cusp of diagnosis and need some advocates in their corner.  When I do what I need to do to help and Zuck repeatedly silences me, well, yes, that makes me angry and cranky.  Enough to write a blog post asking why he hates kids with cancer.  It’s preposterous, I know, but here I am.

And the thing that would make me really, really happy would be if this click bait blog post of mine were to go viral — shared by thousands and thousands of folks who, too, are tired of Facebook for whatever reason.

And the thing that would make me ecstatic would be if all of you reading this clicked on this link for our St. Baldrick’s shave event on March 19 and decided to donate $5 or $10 or $20 or $100 bucks to help researchers do what they can for children and families like mine, living with cancer.  You can click here for that.

And the thing that would make me lose my freaking mind would be if Mark Zuckerberg himself PM’d me and said, “Hey, that’s really not very fair what you said about me on the Facebook.” And I would respond, “Yeah, I know — it was a low blow born out of frustration.  Please accept my apologies.  Hey, while I have your attention, can I tell you a little bit about childhood cancer in America today?” And we went on to have a substantive exchange and he used just a wee bit of his fortune to fund some research for pediatric cancer himself.

Yeah, that would be cool.  Then I would know, for sure, that Mark Zuckerberg doesn’t hate kids with cancer.