Rage, Rage Against The Dying Of The Light

Time to weigh in on the Kellers.

For those who haven’t been following the story, the Kellers are husband and wife journalists: Bill, former executive editor at the New York Times, now Op-Ed columnist; his wife Emma, columnist for The Guardian. They both wrote recent columns about Lisa Boncheck Adams, 40-something year old mother of 3 with Metastatic Breast Cancer who tweets (@adamslisa on Twitter). Controversy ensued.

Emma’s column appeared first, then quickly disappeared when The Guardian removed it while investigating misinformation and breaches of journalistic ethics. In her column, Emma questioned the ethics of tweeting one’s illness, although Emma had written about her own cancer experience a few years ago. She viewed it as “unethical” and declared that all of those tweets from the hospital room spoiled her Christmas. (note to Emma and others, you can turn off your computer or other devices.)

A few days later, after Emma’s column had been removed, Bill chimed in with his column in The Times. He, too, questioned the ethics of tweeting about illness. He also questioned the money spent on aggressive treatments for a stage IV cancer. He wondered why she couldn’t just refuse treatment and go quietly like his elderly father-in-law. He pronounced her choices an inappropriate way to deal with cancer.

The thing is, the Kellers could have raised some important points; I like to think that was their intent. They could have written about the impact of social media on medicine. They could have written about the importance of the online community for support, and the potentially delicate balance of support versus sharing our most intimate moments in a public way. They could have written about disparities in access to healthcare. They could have written about the realities of living a life with metastatic cancer. Or how so many people with metastatic cancer feel no one wants to acknowledge them because they make people nervous, showing the rest of us our darkest fears.

Instead, both of them questioned, in a very personal and judgemental way, how Lisa is choosing to treat her cancer. And that’s the thing that bothered me the most – that they stood in judgement of her treatment choices. Bill compared a young woman with three young children to his frail, elderly father-in-law, and decided she was wrong.

And that’s where I have a problem.

We all make our own very difficult decisions. Once you’ve been diagnosed with any cancer, there are no easy choices. Each cancer is individual and specific. Each one of us is individual and specific. And no one has the right to pass judgement. I want to repeat that: no one has the right to pass judgement.

This is sometimes a really hard thing to remember. Over the years, and again recently, I’ve had to remind myself of that when friends have made choices for themselves that I fear are mistakes. As difficult as it is, I have to remind myself that the best I can do is urge them to do the proper research, to make choices based on knowledge rather than fear. And then hope that their choices work out well. When asked for my opinion, I have to remind them and myself that my opinion is influenced by my own experience and my own cancer.

I was in my mid-30s when I was diagnosed. It felt like my whole life was still ahead of me: children, travel, career…so much life. And as shocking as my initial diagnosis was, it was even more shocking to get my final pathology: a very aggressive, poorly differentiated cancer with poor margins, and a high number of positive lymph nodes. The only piece of good news was that my bones and organs were not riddled with cancer as my doctors expected.

So I fought. I fought hard. I was young and healthy, and chose to fight just as aggressively as my cancer was. My age and my pathology dictated how I chose to fight, and continues to influence how I view cancer. It’s not a cold to get over; it’s not a pretty ribbon. Cancer is a wily, bad-ass, mother-fucker! (sorry for the language, but in this case, it fits)

At the time, I was polite to all the people who had never actually faced their own cancer diagnosis who told me what I was doing wrong – only eat red vegetables, don’t have surgery, chemo will kill you, just learn to love yourself…. After nearly 13 years, I am no longer polite. No one has the right to judge my hard-fought decisions!

And that includes me to other people. It can be painful to watch friends make what I perceive as mistakes. But I have to remember that my opinion is based on my experience….and that experience isn’t theirs. We all have to make our choices.

It was wrong of the Kellers to stand in judgement of how a young woman “does” cancer. Her experience bears no resemblance to Emma’s experience, and certainly not to an old man who was frail and near the end of his days with or without cancer.

If Lisa wants to do everything possible to give herself the possibility of more time with her children, then she has every right to. And if she chooses to write and tweet about it, finding support from a wide community while educating a lot of people about a part of life with cancer that most don’t want to know about, then good for her.

I am deeply sorry that the Kellers chose to write what they did. They could have done something good; they chose not to. But since I try to take something good out of most situations, I chose to use their inappropriate columns as a reminder of one of the basic tenets of cancer that I have: that we have to make our own choices, and no one is entitled to stand in judgement. Even when it’s difficult. We all must make our own way, gently or not.

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightening they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on that sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light. 

                   ~ Dylan Thomas


Be well, my friends.

Julie

If you want to know more about the story and reaction, you can do a quick search on the internet. I would recommend posts at Women with CancerNancy’s PointBreast Cancer Consortium, plus a terrific article by Robert Kessler on Gawker. These are just a few. There have been so many terrific, thoughtful posts, and reporting for the Atlantic, Slate and others. Please take a look.

And please check out Lisa’s writings. She writes with a wonderful clarity, wit, and beauty; I hope you’ll take a look – she’s @adamslisa on twitter, and blogs at http://lisabadams.com/blog/.

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4 Responses to Rage, Rage Against The Dying Of The Light

  1. M. Muscaro says:

    I wonder if either writer has been diagnosed with cancer, or endured surgery, radiation and chemotherapy? It seems to me that choosing late stage treatments may provide a bit more precious time to spend with those you love. (Like your children for instance) Criticizing the choices of others, when confronted with a life and death circumstance is the height of ignorance, and heartlessness.

  2. M. Muscaro says:

    Correction: Upon re- reading the post, I see Mrs. K had indeed survived cancer. Astonishing example of selfishness and lack of empathy.

  3. The Kellers missed the boat in so many ways – all those woulda, coulda, shoulda opportunities… It seems you and I hold similar opinions on that whole mess. And you’re so right about the passing judgment thing that goes on too often. Social media makes this a whole lot easier and sometimes a whole lot meaner. This is just one of the issues from the debacle perhaps worth focusing on. Anyway, terrific post. Thanks for chiming in on the “double-Kellering” mess.

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