TMI?
Posted: January 10, 2014 | Author: pinkunderbelly | Filed under: breast cancer | Tags: breast cancer in young women, cancer patient blogs, cancer patient tweets, Emma Keller, funeral selfies, Lisa B Adams, mothers of young children with breast cancer, social media and cancer, The Guardian, TMI |52 CommentsI came across this article from The Guardian about whether cancer patients share too much information via social media outlets. The article centers around Lisa Adams, who is battling metastatic breast cancer.
Like many of us, Lisa started blogging and tweeting to communicate with her supporters and to connect with others on the same “journey.” Lots of us in cancerland do this; it’s a quick and easy way to broadcast the latest developments, it’s an avenue to connect with others in the same boat, it allows for the dissemination of vital information, and it’s therapeutic. The reasons for blogging and tweeting are as varied as the cancer patients themselves. While we all face a dreaded disease, we do so differently: some of us confront the beast head-on while others close our eyes and wait for it to be over. Some of us share every gory detail while others keep it all inside. Some of us rant while others count our blessings. The one unwritten rule among us is simple: don’t judge. Don’t judge. What works for me may not work for you. It’s all good, just don’t judge.
The article in The Guardian about Lisa’s active social media life breaks that one rule. While the writer, Emma Keller, asks many valid questions about social media, she comes across as very judgmental. She tells us exactly how many times Lisa has tweeted in the past year (165,000) and even points out that Lisa tweeted more than 200 times in a 24-hour period. Why does it matter how many tweets Lisa has put out into the twitterverse? After regaling us with Lisa’s stats, Keller asks this: “Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies?
Should there be boundaries in “this kind of experience????” The kind of “experience” Keller speaks of, aka cancer, certainly has no boundaries. Should we, a bunch of complete strangers, truly expect a young women with three young children to consider having boundaries while seriously and for real fighting for her life??? This is lunacy.
Keller continues: “[Lisa] is trying to create her own boundaries, flimsy as they might be. She’ll tell you all about her pain, for example, but precious little about her children or husband and what they are going through. She describes a fantastic set up at Sloan-Kettering, where she can order what she wants to eat at any time of day or night and get as much pain medication as she needs from a dedicated and compassionate ‘team’, but there is no mention of the cost. She’s living out loud online, but she wants her privacy in real life.”
Keller goes on to add: “You can put a ‘no visitors sign’ on the door of your hospital room, but you welcome the world into your orbit and describe every last Fentanyl patch.”
I wonder why Keller takes issue with the cost of Lisa’s treatment at Sloan-Kettering. The scope of cancer treatments is enormous–doctor’s appointments, lab work, scans, X-rays, surgeries, follow-up appointments, repeat surgeries, hospitalizations, chemo, radiation, drug therapies, and lifelong prescriptions. Wondering what someone’s treatment costs is beyond the pale of social decorum.
As for the issue of TMI and the question of whether Lisa is “oversharing” I suggest this: reading tweets and blogs is purely optional, and one must subscribe to receive them. If you don’t like what your smart phone or tablet or computer is bringing you, opt out. Unsubscribe. De-friend. Unfollow. If you don’t want to read what cancer patients like Lisa offer up, it’s very simple: Don’t.
Just don’t.
But don’t judge. And don’t ask insulting questions, such as: “Are those of us who’ve been drawn into her story going to remember a dying woman’s courage, or are we hooked on a narrative where the stakes are the highest? Will our memories be the ones she wants? What is the appeal of watching someone trying to stay alive?”
First-person accounts from the front lines of the war we wage on cancer are not reality TV. To equate the real-life struggles of life — and potential death — in cancerland with a guilty pleasure one becomes hooked on is insulting.
While I don’t know Lisa, I think it’s safe to say she’s not concerned with whether the twitterverse and twits like Keller remember her the way she wants them to. I betcha she’s much more concerned with the fine-line of managing her pain while still being lucid enough to enjoy her kids. My guess is she would tell you there is no “appeal” of watching someone trying to stay alive when you’re the one doing it. I assume she would gladly give up twitter and blogging today, this very second, if it meant she could go back to her old life. Her pre-cancer life. Her healthy life.
Shame on you, Emma Keller.
The Pink Underbelly 
Right on! Until I can put myself into the victim’s shoes, I’m willing to let people tell as much as it helps them to tell. If I can’t handle it, I’ll tune out or turn off. It’s not about me.
“It’s not about me.” Amen, David.
Thanks for calling Emma Keller on her despicable behavior–and so eloquently too. As you say, just don’t. Don’t subscribe, don’t read, don’t judge! It is crazy to try to review these personal testimonials as if they were a television show. I appreciate your insight and voice.
Thank you, Patti. Your comments are always right on!
I agree with you Nancy. Just don’t sign up for the updates…seriously.
(And I read this post as I’m on the way out the door to celebrate the birthday and bench dedication in memory of our friend who so valiantly fought this battle…and is sorely missed on this day that would be her 47th birthday. I know the posts on her battle are just a fragile glimpse of the fight she fought and a reminder of the joy and personality that was behind them…and the support and love of a family, of friends and a community who are forever touched by her short life.)
Actually 46th birthday–we are the same age and I can’t keep track of my own age…that would bring a big chuckle from her, right??
Haha! She would be chuckling, then she would say “Come here and let me hug your neck!”
We were indeed touched by her short life. Way too short. I’m thinking of her big smile right now.
Wow. How heartless can a human possibly be. It is so not her right to judge, shame on her.
Heartless is right!
I find Ms. Keller to be an offensive, judgmental snob. As a Mother who lost her only daughter to metastatic breast cancer at age 37, I find Lisa Adam’s blogs amazing and honest. The way she describes the road blocks she faces as she moves along this path amazing. My Lisa was the same way, Lisa Adam’s is living every day the best she can and looking for solutions to roadblocks that will allow her to have the longest, best time with her family as possible. For us to have a view into this extremely complex time of any patient’s life is a privilege. If Ms. Keller can’t handle it, she should not read it. And she should never be critical of something she obviously has no understanding of, Ms Keller, just don’t read the articles. I find a Mother’s anger stays in a finely tuned position, always ready to defend her babies, if this is TMI, sorry.
Elizabeth, I’m so sorry for the loss of your daughter. I know well how devastating it is to lose someone beloved to cancer. I thank you for sharing and for reading my blog.
how inconvenient for poor Ms Keller. But you and I know that cancer is nothing but inconvenient.
Inconvenient and inconsiderate.
dear Nancy,
thank you for this post, nauseating, cruel, and inappropriately judgemental as it is. keller may think she’s on the cutting edge of intelligent exploration of social media, but her piece feels more like an inhumane excoriation of Lisa, a woman who has shared her metastatic nightmare with such raw and heart wrenching candor to enlighten a kind of breast cancer experience that has been pushed into the shadows. I find it particularly offensive when keller asks, “are her tweets a grim equivalent of death bed selfies, one step further than funeral selfies?” and, “Lisa is trying to create her own boundaries flimsy as they might be.” where is the compassion? where is there any hint of empathy? and who is keller to pass judgement on whatever Lisa decides are her boundaries? I find it hard to believe that keller was really up to the task of getting up close and personal with Lisa’s reality; maybe she got a big dose of that reality and instead of presenting it the way she might have wished, ended up running scared. I perceive a sense of keller being repulsed by the ravages of Lisa’s disease that allowed her to be hideously lashing out with inane questions that have very little relevance, that are hurtful and serve no purpose. deathbed selfies…flimsy boundaries? WTF were you thinking?
Karen dear, I also wonder what Keller was thinking in writing this hurtful, hateful piece, and my ire is dampened a bit by the overwhelming support our online friends have shown Lisa. As always, I truly value your insight and comments. xo
I don’t know who this Keller person is and I’m sure glad I don’t!
Ironically I just found out Ms Adams Twitter account this past week and have followed. Dong know the entirety (obvi don’t need to) but I, for one, am humbled she’s sharing it LIVE on the front lines.
Agreed, Heather. Humbled is the right word. Being witness to such a raw & real battle is humbling.
Thank you for writing this post, Nancy. I had heard there was some brouhaha about an article written about Lisa and I couldn’t believe it was possible that someone would take what Lisa is doing — educating the masses about what cancer is really like — the wrong way. Thanks for linking to the article and for offering your opinion, which I whole-heartedly embrace.
You have said it all here, so no need for me to repeat your very valid points about Lisa’s very valid (and excruciatingly difficult) experience with the beast that is breast cancer.
TMI? I wish cancer were that respectful! Lisa rocks, and we should all be praising her effort to put it all on the line and learning what grace under fire is really about.
xo
Renn, as usual your insight is spot on. Cancer has no respect, nor does Ms Keller. Lisa is a shining example of the “real” breast cancer–no pretty pink ribbons here.
What an idiot. Should she ever be in our shoes, what would she write about? Sheesh!
Good point, Caroline — what would she write about if she found herself walking a mile in the pink shoes. Sheesh, indeed.
I wonder if this Keller is objecting to the fact that Adams is sharing the reality of the cancer experience rather than the socially acceptable, warrior-winning-over-cancer story that is usually the only thing allowed on TV and other media. Keller states she cannot seem to stop herself from reading the tweets, etc. Sounds to me she is just another person who cannot handle the truth about cancer.
Yep, most people don’t want to see the real cancer but prefer the prettied-up version. All the more reason to support voices like Lisa’s.
Reblogged this on the risky body.
Thank you for reblogging!
I can’t help but wonder if Lisa isn’t throwing all of these tweets out into cyberspace to get rid of what she can’t help but feel, so that the time she does spend with her husband and children can be devoted more to them and care for how they are hurting. Regardless, it’s a tragic situation, and it’s absurd for someone to stand in judgment against how another person handles it. You are so right, Nancy – if Keller doesn’t like it, she should just turn it off and shut up about it.
Jody, you’re probably right — tweeting is cathartic, which leaves more room for the good stuff to be savored.
“Death bed selfies.” One seriously fucked up person.
I kept thinking of this woman writer. This woman who could just as easily get breast cancer as the rest of us. This woman who would turn to writing to stay sane. Bitch.
Staying sane is the goal, right Scorchy? Well, staying sane and staying alive, that is.
The ironic thing about this is that Keller essentially accused Lisa of sharing her particular perspective in a way that Keller judged as unnecessary, then turned around and shared her own perspective in a manner that many of us have found unnecessary. She ought to have applied her own judgment to herself before writing and publishing it in the first place. And what’s up with the editors at the Guardian? It’s one thing to write about how cancer patients use social media to cope. It’s another to go after one woman with mets. This was gratuitous bullying, not journalism.
Right on, sistah! Right on!!
Yep, a bully is a bully whether on a playground or masquerading as a professional journalist.
It’s interesting to read both Emma Keller’s article and this blog post. I do believe that Ms Keller’s article was unsympathetic and, might I add, unethical, not letting her know that she was a reporter and would be using their communications in a popular periodical. Both of these things are, IMHO, despicable. What it really shows is Ms. Keller’s complete and utter ignorance on the subject at hand. You cannot begin to know what it is like to go through such an experience. I have been stage 4 terminal breast cancer for 3 years now. Having outlived the expectations for 2 years. With deepest respect and love for the blogger here, not even early stage cancer patients really truly understand what we go through. Living every single day with the fear that you might catch a germ that will put you in the hospital and you won’t recover from it. You can be dead in only a few days. Having your children try to deal with this fear as well and not being able to help them. The pain that Lisa Adams is describing is so all consuming. I have had pain like that but on a smaller scale. Nerve pain is devastating. When you have it, you are not a mother, not a wife, not a human being, you just want some kind of relief, something, anything. I liken the pain to having poison ivy deep inside my body and having no way of getting to it to scratch or even apply soothing medications. It is more than pain, it makes you mentally “crazy”. Apparently tweeting is her way of putting it out there because many times when we say it out loud, it helps the pain. It really does. I agree with the blog post, if you don’t like it, don’t judge and don’t read it. Nobody is forcing you to listen to her. Having said all this, I don’t feel upset with Ms. Keller for her stance, I tell my kids, everybody has the right to their own opinion, no matter what. Thank goodness we live in a country that allows us to have our own opinions. It’s just too bad that talented journalists choose to write about things of which they have no real knowledge. I pray that Ms. Keller, or anybody else for that matter, will never have to feel the pain that Lisa Adams is feeling right now.
Kristi, I agree completely that those who are NED can’t truly understand what it’s like to live with mets. Regardless of how harrowing our cancers were, we can’t grasp what it’s like to live with stage iv. God help Keller if she ever finds herself a member of the cancer club.
This is excellent, Nancy. I am posting the letter I sent to The Guardian about the article on my blog in a few minutes.
Awesome!
[…] Today I wrote the following letter to the English newspaper, The Guardian. It was my response to an online article about whether it is appropriate or ethical for people with stage IV cancer to use social media to communicate about their illness. Lisa Bonchek Adams, a well known breast cancer blogger and communicator through other social media, was used as an example. I was angered by the article, the singling out of Lisa, and the many criticisms Lisa received in the comments section. The article can be found here. Lisa Bonchek Adams’ blog can be found here. Also see Nancy’s excellent essay at the Pink Underbelly. […]
Bravo! Thank you for this posting, where you’ve beautifully, perfectly articulated the reaction so many of us have had to Emma Keller’s insulting, heartless article. Comparing Lisa Adams’ grace, bravery, and poignant honesty to “funeral selfies” is one of the most appalling things I can imagine.
It’s gratifying to see so many speaking out against Keller’s article. I’m glad you’re with us!
So well said. ~Catherine
Catherine, that’s high praise coming from you!
As evidenced by Ms Keller, dicks can write too. Noted.
Duly noted!
Excellent article, DPU! Shame on Keller.
Many thanks, Marsha.
[…] blogging about Emma Keller’s article in The Guardian about Lisa Adams (read my thoughts here), I felt better. Reading the comments that came in response to that blog made me feel better still. […]
[…] her experience of metastatic breast cancer. The first I heard of it was on reading a post by Nancy of The Pink Underbelly blog and so I went to read the original article. I wanted to write my own perspective, but for the first […]
I am going to keep it simple…let Lisa do Lisa…there is no one right way (and no wrong way) to experience and process trauma…I am late to this discussion but handily and rightfully skewered girl.
So wise, Lauren, as always. xo
I have breast cancer. A week ago, I had breast cancer, and the week before that, and the week before that. Maybe five, eight, even ten years ago, the first bad cell split inside me, secretly. But I didn’t know. This is how I arrived at knowing.
[…] Lisa. There was some amazing writing about this whole situation, including pieces by Nancy at the Pink Underbelly, Elizabeth at My Eyes Are Up Here, Renn at The Big C and Me, and Nancy at Nancy’s Point. […]