Monday, January 13, 2014

A Tale Of Two Kellers

I've been following Lisa Bonchek Adams for quite some time.  She's a patient advocate and cancer truth-teller, discussing the details of her ongoing ordeal with stage 4 breast cancer in an open and honest way.  I found her shortly after my own diagnosis, when I was confused and disoriented, having stumbled into a world that no longer made sense to me.  People like Lisa are important for several reasons.  Let's make a list.

1.) They point the way for cancer patients.  According to the American Cancer Society, an estimated 1,660,290 people were diagnosed with cancer in 2013, roughly 72,000 of them were young adults, or people aged 15-39.  I was diagnosed at 25.  I had no idea what to do.  Immediately, I switched into handler mode, but quickly lost momentum and crashed into a sea of depression.  There isn't a lot you can do, lost and alone, to help yourself in the midst of a crisis.  Part of a healthy recovery includes a strong support network.  People like Lisa provided that for me, as I took to social media to commiserate and learn from those who had gone before me.

2.) They point the way for the rest of us.  Having cancer is awful.  But it teaches you things.  If you listen long enough to someone who has the disease, they might just convince you of what's really important in life, and you might just become a happier, healthier individual for it.

3.) These stories must be heard.  They contain hard truths.  Death, suffering, grief, depression, and the macabre are all realities in this life.  To ignore the truth means to become less adjusted and more easily taken in by falsehoods.  There are a lot of falsehoods when it comes to cancer.  Most everyone gets it wrong.  It's hardly ever represented truthfully, because the truth is too painful for the culture of ignorance we've created.  In one of my first posts, I discuss this idea in detail.  You can read it here.

In a recent twist on Lisa's story, two op-eds were published by Emma and Bill Keller.  Emma's ran in the Guardian (since pulled), and Bill's ran in the New York Times.  Emma suggested that Lisa's approach to disseminating information revolving her struggle was offensive.  Bill backed her up when the public outcry delivered a swift backlash.  There's a great piece summarizing the whole incident making the rounds.  It was written by Megan Garber and ran in the Atlantic.  You can read that here, complete with featured tweets from Jeopardy record-holder Ken Jennings and cancer patient advocates.

The question here is how we, as a society, would like to operate.  We can certainly choose to waltz through life peeking out from the wool over our eyes in some misguided attempt to preserve innocence.  That's the route the Kellers have chosen.  They're very adamant about the terminally ill keeping quiet, not ruining it for the rest of us.  Because the rest of us will surely never die.  Suffering will never touch anyone but Lisa Bonchek Adams, so let her do her suffering somewhere soundproof.  It's my firm belief that looking away never helped anyone, and the only way to move forward on an issue is to have an open and honest conversation about it.  And that's exactly what Lisa has been doing all along.  If cancer ever kills me, you can be sure I won't go quietly.