The Shoulds

The knee-jerk reaction to the Keller op/ed pieces I read most often took issue with the idea that Adams should go away and die quietly. That got my own knee a-jerking because it’s as obvious as the nose on my face that no one told Lisa Adams to shut up and die. The Kellers were analyzing what a narrative and a methodology like Adams’ mean in the greater context of illness and society. The real story here, as I wrote, was the way this outsized response did little more than impose another normative set of rules – how “outsiders” are allowed to speak about the social media derring-dos of this so named e-patient movement.

Let me make sure I am clear enough on one point — there is no right or wrong way to have cancer.

Biology!!

Scientists have been learning in recent years that there is not just cancer vs. no cancer.  Each tumor has its own unique composition of cells and that composition; the heterogeneity, growth pattern, and other unique behaviors, affects the outcome.  I think that’s also true of the person with the disease. We are each a unique combination of biology and chemistry with a history, psychological makeup, varying support structures, confidence, woundings and sources of strength. Those affect how we cope with the massive psychological blow of this rotten disease.

What I believe is incumbent on me, a person who has made it this far past my 2008 diagnosis, is to allow for people who’ve been touched by this shitty conglomeration of diseases to tell their own story.  That’s not the same as sitting on my front porch and watching life go by.  Work is needed to build and maintain safe paths available for everyone.

Yep, that includes Adams and the Kellers.  As far as I can tell, there are plenty of guardians on the social media paths already. How about elsewhere?

In the litany of the Keller wrongs, it was often cited that comparing Adams to Mrs. Keller’s father is invalid because he was elderly and she is in her 40s.  I admit there is something particularly unjust about a young person with cancer – in cancer terms I was too – a newly minted 41-year-old at diagnosis. But this argument all too quickly descends from tsk-tsk-isn’t-it-a-shame thinking to the Orwellian notion that some animals are more equal than others. The elder Mr. Keller likely suffered from the same debilitating side effects of this stupid disease. He too was in pain and was valuable. He too was loved and needed by his family.

To imply that his choice to stop treatment was somehow more acceptable because he was older is to say, in essence – Of course old people don’t stand and fight. They’ve lived enough already.  Let’s not be greedy.

Of course, we have absolutely no idea if that is the case, nor is it our place to assume a person’s demographics dictate a cogent treatment path. After all, as god and all of Twitter know, we are going to scream and type in caps when we believe someone is doing that to one of our own.  You Can’t Judge Us!

My favorite pinball machine/symbol of my misspent youth. One phrase it shouts — “You pay your money, you take your chances.”

But we judge. I don’t know if it’s an innate human tendency of not, but it sure is ubiquitous with varying degrees of severity.

When I put my words out in the world, I know I will be judged by them.  I try to be careful in my clarity so as to avoid misunderstanding. But once they’re out there, they are public domain. If I’m lucky, they will interact with your thoughts and context and meaning will be created. The meaning you create is largely out of my control.

We can spend a century arguing about what the meaning of “is” is, but to expect that somehow our words are so precious that they can’t be examined, dissected, philosophized about, or put into unintended contexts is foolish. Part of being empowered is to accept responsibility for your action. Start pointing the finger of blame at a cruel misunderstanding world and you’ve just given away all your agency.

While there are no better or worse ways to have cancer, people will have an opinion of how you cope with your disease. Your job, our job, is not to squash their opinions out of them or to shame them into a silent corner. You choose to pay attention to those norms, those shoulds, or not.

Trailblazers raise eyebrows. I say embrace it.

That Adams’ story has garnered attention outside of our own teapot is a good thing. People are (or were) paying attention. That this opportunity was squandered by assuming the finger-pointing, how dare you? stance of victimhood is heartbreaking to me.  That the Kellers, have been maligned and belittled under the guise of being “bullies” enrages me.

So here we are, weeks out.  The lines between Us and Them have been redrawn, reinforced, and I bet good money that no one as prominent as the Kellers will dare write about cancer and social media again.

The lid’s securely back on your teapot. Pat yourself on the back for all your Pyrrhic righteousness.