I was first drawn to the blog of Lisa Adams about three years ago shortly after I began blogging myself. I was immediately drawn to her style of writing and to the topics she chose. Lisa and I both write about breast cancer. Lisa and I both write about grief and loss. Lisa and I have similar views on various hot-button issues in breast cancer advocacy. And of course, now Lisa also writes about her metastatic breast cancer experience.
I have no idea if Lisa reads my blog on any regular basis, but I definitely have been following hers for quite some time because she’s a wonderful writer who writes from her heart. I do follow her on Twitter and she follows me, though we don’t interact a great deal.
I hesitated to write this post in part because I thought Emma Keller’s recent piece, “Forget funeral selfies. What are the ethics of tweeting a terminal illness?”, published in The Guardian, (the piece was taken down due to investigation, yeah, like we believe that), actually potentially raised a valid question or two. Ms. Keller may have started out with good intentions, or at least valid questions in mind, but she completely missed the mark. She screwed up big time.
She took what might have been a couple of valid topics to discuss and instead turned them into a personal attack on Lisa Adams, or at least that’s how many viewed it. Taken further, it became viewed by many (me included) as an attack on others who share their cancer experiences online as well.
Though the first sentence of her piece, “Lisa Adams is dying of breast cancer,” was wrong, out of line, crass and mean spirited, raising the question, Is tweeting a terminal illness ethical? (yes!) is completely legit in my view. Almost any topic can be up for discussion. Unfortunately, Ms. Keller did not choose discussing this particular topic, but rather instead chose zeroing in on one woman’s tweets and as a result, her article immediately became judgmental and nasty. Big mistake.
Next, she attacked Lisa for tweeting too much, but at the same time, not enough. In her eyes, Lisa tweeted too much about dark personal pain-related stuff and not enough about her kids and family and how they were doing. Really?
As someone who writes about very personal matters on my blog, I understand this completely. I have only scratched the surface of many topics because I always try to be mindful of the privacy of my family. Lisa’s tweets are hers. She can share whatever she chooses to. Again, Ms. Keller was out of line. Way out.
Thirdly – Ms. Keller seemed to go after the medical care Lisa has been receiving. She seemed to be suggesting that there is something questionable about Lisa’s stellar care, access to clinical trials and/or about the funds Lisa is raising for cancer research at the top-notch facility where she’s being treated, New York’s Memorial Sloan Kettering Cancer Center. She raised questions about the unknown cost of it all. Again, a valid opportunity was missed. Disparity is a huge deal in health care, but it certainly has nothing to do with the care Lisa Adams is or is not receiving. The effort should always be to raise up the quality of care for those who are presently receiving less than stellar care, not to put down someone who is receiving it. Another blunder in my book.
Fourth – Social media is a huge deal to more and more cancer patients because so often it’s where we communicate, interact, learn from and support one another. The article was an attack on all of us who engage through such venues. Another huge mis-step. And as the Keller’s quickly discovered, this cancer community is a tightly-knit group; we’re in this together – online or not. When one of us gets knocked around, plenty of others are ready and willing to rise to the occasion and speak out.
There were more issues with the article, but as I said, it’s been taken down and my memory fails me.
Bottom line is, it missed the mark completely and readers tore it to shreds and rightfully so.
Enter Bill Keller, a former executive editor of the New York Times, and his equally off-the-mark article, “Heroic Measures,” which surfaced a few days later. And yes, he’s married to the author of the first-mentioned piece.
Again, Mr. Keller’s intentions might have been good ones. I try not to judge a person’s intentions. Primarily though, it seems he was coming to his wife’s aid and trying his best to save face, well actually, her face.
He failed and ended up doing more harm than good.
He simply had no idea what he was talking about. He clearly had not done his research and as a journalist, obviously this is a major no-no. I’m not a trained journalist, but even I always try my best to get the facts right. And Mr. Keller clearly did not. Sure it was an opinion piece, but you still need to be accurate in information relayed and he was not.
For starters, anyone who follows Lisa’s blog knows her feelings on the use of war metaphors. Anyone who reads her blog knows he got that and whole lot more all wrong. In addition, he went on to compare Lisa’s cancer situation with that of his ill (and now deceased) father-in-law’s; again, totally off-base comparisons were made between the two very different situations. Also, I couldn’t help but notice that both Kellers seem misinformed as to what palliative care means.
Mr. Keller’s piece was so off the mark, I won’t even bother to say more as this post is already getting lengthy. You can read it for yourself if you care to and make your own judgments.
Even with all these factors, I still hesitated to write this post for another reason that was hard to put my finger on. I kept thinking about all the women out there with metastatic disease who do not have an online presence like Lisa Adams does. I kept asking myself, what about them? Is all this commotion helping them? Undoubtedly, it’s sending more readers Lisa’s way, which is great for Lisa, but for those other women, not so much.
Then it hit me.
Trailblazers/leaders do often garner lots of attention and yes, criticism as well. And Lisa Adams is a tweeting trailblazer. She’s been tweeting for years. Yes, she’s tweeted over 165,00 tweets. Heck, Lisa can probably tweet with one hand or in her sleep. She’s good at it. And yes, some of her tweets have become dark and more serious of late because she’s dealing with metastatic disease progression and has been hospitalized for two weeks for crying out loud! It’s completely logical. Everyone who reads Lisa’s blog knows she’s candid and avoids the just stay positive BS.
Most importantly, Lisa has said repeatedly that one of her main goals has always been to share as candidly as possible about her cancer experience and also about the full spectrum of the disease through her platforms, including Twitter. This is exactly why her readers and followers read her stuff and more importantly, why they genuinely care about her. People crave and respond to truth.
This is also exactly why people are learning a great deal from her writing. Lisa Adams is doing her part and more to continue bringing the realities of living with metastatic disease out into the open. (It seems the Kellers might prefer a more quiet approach).
In the scheme of things, Lisa’s approach helps everyone, with or without cancer, and with or without an online presence.
So yes, the Keller’s both screwed up. They completely missed opportunities to discuss legitimate topics, but instead chose quite a different path – one that quickly took them both in the wrong direction(s).
Perhaps they could still fix things. Apologies can go a long way.
Lisa Adams deserves an apology.
Perhaps we all do.
Do you have thoughts to share?
How do you feel about tweets and online sharing about illness, terminal or otherwise?
What was your reaction to either or both of the Keller articles?