Wednesday, January 22, 2014

Finding the Beauty

Unless you follow a certain segment of Twitter users, you may have missed the uproar that occurred last week following a set of articles about how a woman, Lisa Adams, is treating and tweeting about her Stage 4 breast cancer. The first article, published in The Guardian and written by Emma Keller, has been taken down (but cached here) while the publication investigates allegations that the author used quotes taken from conversations with Lisa without Lisa's permission. Journalistic fail number one. 

The gist of the article is that Lisa is over-sharing on social media. (Isn't that what the "unfollow" button is for?) I've been a follower of Lisa's for awhile, long enough to remember when her cancer metastasized after more than five years' dormancy. So she hasn't been in "decline" for seven years as Emma Keller incorrectly observed. Lisa isn't even "dying out loud," as Keller asserts (journalistic fails nos. 2 & 3, at least), although the last month has not been easy for Lisa, who has spent most of it in a hospital receiving radiation treatments and working with her medical team to figure out the next course of treatment for her cancer.

That's what we stage four patients do--scan, treat, rescan, repeat. 

I am lucky. Right now (and since November) I have what's called no evidence of disease. But I still receive chemo every three weeks, still have scans every three months, still live with the fear every. single. day. that this cancer could change its course, figure out a chink in my chemo's armor, and wreak havoc on my body, my life. Still, I would not yet be dying. I--and Lisa--have incurable cancer. But we are very much living with our disease.

The second article was an editorial in the New York Times, written by (wait for it) Emma Keller's husband, Bill Keller, less than a week after Emma's article in The Guardian. Lots of us in the blogosphere are asking and none of us are quite sure why this couple chose Ms. Adams to gang up on. Mr. Keller is a former executive editor of the Times, and certainly must realize the weight and reach and influence of his space in that publication. He chose to be an ass, anyway.

He focused his questions not on whether Lisa was sharing too much (although he questioned that, too) but on whether she was grasping at straws to keep her alive when she should instead (I'm paraphrasing here, but barely) do the graceful thing and just die, already. 

The Twitter-verse and blogosphere erupted with anger at the Kellers' collective lack of humanity, and rightfully so. Lots of people have written very thoughtfully about how uncouth the Keller articles were, and those posts are worth reading. As is Lisa Adams' blog and Twitter feed, if you're up for it.

Not to beat a dead horse, but I do want to comment on an idea that both Bill and Emma Keller failed to entertain: that why Lisa Adams writes--why any of us with cancer write--has nothing to do with them. I'm speaking for a lot of people, now, so I want to tread carefully, but I think most of us write because, as my dear friend Sandi knows, writing is healing. Sure, we adore our audiences, but we write because it is therapeutic for ourselves

We write to share our experiences, to tell our stories, to maybe make a difference, to educate, to express part of the ever-fluctuating landscape of emotions that comes with a cancer diagnosis, to offer hope, to heal. In writing, we find peace/solace/beauty/comfort/life. We find life. And then we share those things, in the hopes that you, too, will see them. 

I was livid about what Emma and Bill Keller wrote, but if I'm going to find a silver lining, the reaction to their articles has shed light on what it means to live with--and write about--metastatic breast cancer. As Lisa would say, I'm trying to find the beauty.