Is Lisa Adams a too public reminder of a private fear?
Since I posted a summary yesterday of the backlash against the Kellers’ opinions on Lisa Adam’s sharing her experience of Stage IV cancer with the world via social media, there has been a veritable storm of great commentary and debate Both Gayle Sulik and Nancy Stordahl make a good point which I think has been lost slightly in the brouhaha caused by the offending articles. Somewhere nestled among the inaccurate reporting, the snide commentary, and crass insensitivity of the Kellers, there exists the germ of an idea – the potential for an open and honest debate about society’s attitudes to how we live and die today. But that conversation is something best left to writers more eloquent and thoughtful than the Kellers.
I was curious to know how the Kellers have reacted to the backlash, and it turns out they feel they have been misunderstood in their intentions. Emma Keller expressed her dismay in a tweet saying that “It has been an overwhelming experience to be so misread to say the least!” And once again, the irony of the remark seems to have bypassed this pair, who are, as Nancy on her blog rightly points out, so wide of the mark when it comes to Lisa’s intentions and the way that online patient communities work.
But here is an interesting fact that I only vaguely registered before now. Emma Keller has had her own brush with breast cancer. Keller two years ago wrote of her diagnosis of “Stage 0″ breast cancer and subsequent mastectomy. “My goal all along has been to put this experience behind me as fast as possible before carrying on with life as normal,” she said at the time.
Now I find that statement very interesting, for if Keller had managed to put it behind her as completely as she set out to do, why would she be taking such a personal interest in how many times Lisa Adams has tweeted about her experience? All along, while reading Keller’s vitriol something nagged at the back of my mind. Why so personal?
Having cancer is not a onetime event but an ongoing process of change in which we learn to live with an uncertain future. Once cancer has touched your life nothing will ever be the same. Life is uncertain for all of us, but those with a cancer diagnosis have a heightened awareness of that uncertainty. Cancer lays bare your vulnerability and underlines the uncertainty of life. Could it be that this is the nub of what makes Keller so uncomfortable? She writes of being uneasy with her voyeuristic following of Lisa’s tweets, but again, why so interested, if cancer is in the past for her?
I will leave those questions hanging in the air for now. Anything more and I will be in danger of straying into Keller territory – ascribing motivations and thoughts to someone I only know from a cursory glance at their writing.
Still. It’s an interesting question to consider. Can we ever truly put cancer behind us? Isn’t it always lurking just behind the door, ready to pounce on us again? And does Lisa Adams represent our worst fears about cancer returning? Is that the real reason Ms Keller why she should just stay quiet and not be so in our faces – a public reminder of a private fear? A fear which maybe so hidden it can never be publicly acknowledged?
A very thoughtful post, Marie, raising some interesting questions and ideas.
When I was first diagnosed with breast cancer, I felt that I personified Everywoman’s greatest fear. I imagine that feeling is even more intense when one is diagnosed with mets.
I also feel it pretty strongly in aging – that I am becoming just whom no one wants to be. Then I realize that may be an offensive remark to our group. I am sure that many of you would give anything just to get old…. I do not mean to be insensitive.
Lois, thank you for your thoughtful insight, and I am certainly not offended by you. You raise a very valid point about how society views seniors. The discussion raised by the articles about Lisa bring up the possibility of deeper and wider discussions on many issues that society would rather brush under the carpet, and as you rightly point out, ageing is one of those things
Yes, cancer does indeed inflict vulnerability and uncertainty. Perhaps the fear of cancer’s return was the impetus for Kellergate. If so, I feel for the Kellers (I’m well-acquainted with this fear). However, their fear is Lisa’s reality, and the reality of many others living with mets. Fear and insensitivity do not trump reality, IMHO, and they still owe her an apology–and might I suggest they channel their misguided efforts toward a hefty donation to Lisa’s beloved Sloan-Kettering?
I fear that without brave voices like Lisa Adams our society will remain in the dark about metastatic cancer, its perniciousness and in how far little progress we’ve made against it. While Mrs. Keller addressed her cancer in her own way, there is no assurance that “mets” might not occur later. I think your point on this matter is exactly why it proved so sensitive to prompt Mrs. Keller to write about Lisa Adams at all. It struck home because she knows she is still in the running. While no one would assign anyone with cancer to become an advocate, we need champions like Lisa to put a real face on the disease and to make people understand why we all need to do more in bringing better treatments to patients. Mrs. Keller can afford to sit out from the fray, but she owes Lisa her thanks for advocating for all patients by giving witness to her own experience. There may come another day when she realizes how important her voice is.
Carmen and Nancy, so well-said. Who among us knows when we will be find ourselves with a similar diagnosis to Lisa? And if we do, where then shall we turn? To those who have paved a way for us through the minefield that awaits. It is the reason I am a patient advocate after my own brush with breast cancer – and choose not to just put it behind me. I believe that those of us who have learned lessons through hard painful life experiences owe it to share those lessons lesson in the hopes of making it easier for those who come behind us.
Such an excellent question, Marie – and one I’ve been wondering too, puzzled by Emma’s inappropriately smug pontifications on Lisa doing cancer the “wrong” way. Reminded me in a strange way of a comment from Tabatha Southey, a Toronto journalist who wrote:
“As the mother of a child who was for a long time highly ‘special needs’, I was sometimes tempted to tell horrified new or pregnant mothers who witnessed the grimmer moments of our lives that ‘I drank heavily only in the first trimester’, just to put their minds at ease.
“They would never be us. Too good. Too clever.”
Reading Lisa’s in-your-face blog/Tweets (particularly in recent months) must be a terrifying experience for any woman who insists that they’ve “put this experience behind me as fast as possible before carrying on with life as normal.”
I think there is an element among the survivors of diseases like cancer, or heart attacks to do some kind of mental juggling with facts – well she smoked and drank, he ate red meat all the time – I don’t do that, so therefore I will be protected. And in the case of the Kellers they seem to have the impression that Stage IV cancer is not preceded by anything – it is a diagnosis all by itself, and completely unconnected with them – as Susan points out in her comment below – not only are they wide of the mark in this, but they are missing out on a precious opportunity to educate themselves and their readers about the realities of cancer.
Marie, thank you for this excellent thought provoking post.
The fact that Emma Keller had breast cancer and needs to put it behind her without acknowledging the truth about the disease and educating herself is sad. It again shows that she is missing the point and being defensive by using Twitter only to say she is being misunderstood. This is an opportunity for her and her husband to learn why they crossed the line.
It was also offensive when Bill Keller brought up the death of his father-in-law and implying that Lisa should just go ahead and die quietly while she’s quite alive. When did journalists become bullies? Lisa Tweets and blog are helping so many of us. She allows us to be part of her experience.
I loved her Tweet this morning…
@AdamsLisa Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.
I appreciate reading her blog and story. She is an excellent writer. I can’t excuse the Keller’s mean spirited look at Lisa Adams. If they are afraid of listening to a beautiful mother who is expressing her experience as a metastatic breast cancer patient, they don’t have to read her blog.
Lisa is also an incredible poet. Her words and descriptions and everything that allows her talented self to come out is so uplifting to read. The Kellers owe Lisa and the breast cancer community a huge apology. I hope reading all of the negative reaction to them helps them wake up. They have made a lot of people angry with what they had to say.
They need to read all of these reactions including Lani Horn at: http://breastcancerconsortium.net/cancer-ptsd-double-kellering-lisa-adams/, and listen as well as have some journalistic integrity. I also love the idea of a donation to Lisa’s beloved Sloan-Kettering which she has raised a lot of money for. Do you think with the Kellers that all of our thoughts are going to be on deaf-ears?
While I can have empathy that the Kellers may be afraid, I still can’t ignore their ignorance. I hope they can try to listen and learn.
So much was made of the number of Lisa’s tweets in both Keller articles, as if she was bombarding the internet with a barrage of squicky TMI. If you actually follow her tweets, you will see she spends a majority of her tweets saying “thank you”, “I appreciate that”, or supporting others, answering questions, ENGAGING with people in a positive, reciprocal way. That’s why I read her tweets and blog, I find the words, the very presence of this extraordinarily decent, honest, clear thinking person an absolute inspiration. Lisa Adams is a person I have grown to really like, and wish I could be more like.
I think that was part of the furor of the backlash. Those of us who follow her, have had the honor to get to know her as an uncommonly decent person living with unassailable integrity. That integrity is palpable through her writing. She just, simply, thinks elegantly and compassionately about the world and her fellow humans in it.
The cancer, the corgis, her love of flowers and children: they are all like different clothes arranged on a beautiful form. It wouldn’t matter so much if the clothes happened to be different: the form, her core, is unmistakably, touchingly beautiful.
I always love to meet, emeet, even imagine inspirational people. Thank you Lisa Adams.
Thank you so much for your beautiful comment Helen – it’s a terrific point you make about judging the quantity of Lisa’s tweets in isolation from the quality and value they give to so many. Your words about Lisa’s elegance and compassion do you credit as much as it does Lisa herself.
Very interesting. Oh yeah there is real resistance to the idea that there is a cosmic crapshoot of life. If we just eat the right things, avoid this, do that, and have a “positive mental attitude” that we will be young and strong and handsome all our days and we will live forever.
Ain’t gonna happen. 🙂
More and more I believe that until we figure this out (that we are all going to die one day and it’s not up to us when) we are only half alive. It’s when we come up against the possibility of death that we start taking the question, “How shall I live?” seriously. There are poignant and powerful answers to be found once we know enough to start listening. No better place to begin than through other people’s experiences: “true tales”, not “fairy tales. The former may make us uncomfortable but I like what Pema Chodron said about that place:
“Becoming intimate with the queasy feeling of being in the middle of nowhere only makes our hearts more tender. when we are brave enough to stay in the middle, compassion arises spontaneously. By not knowing, not hoping to know, and not acting like we know what is happening, we begin to access our inner strength.
Yes it seems reasonable to want some kind of relief. If we can make the situation right or wrong, if we can pin it down in any way, then we are on familiar ground. But something has shaken up our familiar patterns and frequently they no longer work…. The open-ended tender place is called bodhichitta. Staying with it is what heals. It allows us to let go of our self-importance. It’s how the warrior learns to love. “
Thanks Victoria for that exquisite Pema Chodron quotation. It says it all, doesn’t it?
You’re very welcome, Carolyn. It’s one of my personal favs and, yes, I think it does say so much.
I couldn’t agree more. When I was quite young I had the epiphany that it is the fact that death awaits that makes life worth living. If we had forever, would life be special to us? I shared that thought with friends and they decided I was crazy.
When I was diagnosed with cancer, it became even more true. Life became doubly precious and I became more thoughtful about how I spent it. Was it a “gift” that cancer gave me? To be aware, to treasure the moments, to feel the urgency?
Perhaps the only way to “put it all behind us and go on” is to face one’s mortality squarely, then do what you have to do, take each step, live an hour or a day at a time? Denial takes so much energy.
Again, I want to say that I do not have mets as far as I know and I do not think I know how I would feel if I did. I cannot predict how I would react and talk blithely about “gifts” in that situation.
I do know that the time I am spending with my seriously ill husband is more than precious. I have no clue how I will deal with his leaving me, be it tomorrow or a year from now.
And I want you to know I have deep love for this list and all of you.
“Denial takes so much energy.” Couldn’t agree more, Lois. I was a recovering alcoholic before I was diagnosed. Wouldn’t wish either of those on my worst enemy but they brought me clarity and a certain serenity. Not all the time – it’s a work in process – but it’s light years from where I was 5 or 10 years ago.
I am so sorry to hear about your husband. You have my prayers and a candle when I pass by church tomorrow.
Victoria you certainly pulled no punches there! If we can find a way to separate ourselves from those of have an illness like cancer, we think we can live with the illusion of control, and deny the randomness of this disease.
Thanks for that great comment and for sharing one of my favorite go-to authors Pema Chodron.
Marie, I blogged on this yesterday as well.(Dear Mr. and Mrs. Keller) My sense on this is yes, it is curious that one would chose to read something and then complain that it made you sick. If it hurts when you go like this, do go like this. I don’t like psychological thriller movies, so I dont go. I think it comes down to kindness and trust to a person who is sick, and taking it and being cruel. In my blog, I asked the Kellers not to read my blog. I asked about their own brush with cancer and what they learned…Explaining its tough enough to be sick without having someone put rocks on your head. Katie also blogged about this unkindness factor.
So glad you blogged about it too Lauren – you always share compassionately and wisely. Off to read it now.
A very interesting question, and I reckon many of us have similar opinions on whether cancer can fully be ‘put behind’ and how it could have impacted this women’s desire to follow and write Lisa’s story.
Putting aside the Kellers and looking at the question, I personally want to “journey beyond breast cancer” (to borrow your phrase) alongside this stage four diagnosis. But I cannot do that by ignoring the impact and reality of the disease. Moving forward means finding a relationships between who I want to be, and what has happened to bring me to this moment. Ignoring either end of that would be a burden in itself. ~Catherine
I believe the answers are quite simple. Mr Keller’s experience with his father’s death may have evoked an attitude that many do, you lived your life, no heroic means to sustain life once the inevitable is known… he may have had little exposure to death and dying. Mrs Keller through her own experiences with Breast Cancer combine the two and you have unmitigated fear…. the fear of the unknown can be far more traumatic than dealing with something head on….
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