Like a funeral selfie? An Open Letter to Emma G. Keller and the editors of The Guardian

Image credit: Serp / 123RF Stock Photo

Going into more than one kind of light.
Image credit: Serp / 123RF Stock Photo

In reference to Ms Keller’s astonishing piece “Forget funeral selfies. What are the ethics of tweeting a terminal illness?” published online on 8 January 2014.

First, my full disclosure: Like Lisa Bonchek Adams, I have Stage IV (advanced, metastatic) breast cancer, although I am perhaps not as close to the end as Lisa is. I have a blog. I tweet and I use Facebook. Ms Keller, do you have something to disclose? I am at a loss to understand why you felt it necessary to write this opinion piece and more particularly why you felt it necessary to blitz Lisa Adams with barely disguised ad hominem attacks.

There are so many hurtful elements in “Forget funeral selfies” that I cannot respond to all of them. Indeed, I don’t want to. I read the piece yesterday (It doesn’t seem be a journalistic article, and it’s not really an essay, either. I don’t know how to describe Keller’s text other than as a “piece”.) and was so upset by it that I put off writing this response until today.

Let’s start with “funeral selfies”, shall we? Quoting Keller, “Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are her [Lisa Adams’] tweets a grim equivalent of deathbed selfies, one step further than funeral selfies? Why am I so obsessed?” I’ll leave it to Keller to explore the question about her own “obsession” and her discomfort with it, though I think it would have been better for her on a personal level and would have led to a much deeper and more interesting essay had she done so before publishing.

Okay, then: funeral selfies – cellphone photographs some people take of themselves while attending funerals. They are in questionable taste at the very least, most of us would agree, and very self-centered at a time when our thoughts should turn to the deceased. From the beginning, then, Keller tells us what we are expected to take away from her piece: live tweeting one’s experience of terminal illness is bad form.

But how is tweeting (or blogging) my personal experience equivalent to funeral selfies, let alone “one step further”, a “deathbed selfie”? The comparison is so strange that I had a terrible time trying to take it in.

Then it came to me. Those of us who use social media to talk about our experience with our terminal illness are defying categories. Social media is supposed to be for people who eat in restaurants and play with their pets and attend sporting events and go to professional conferences, right? People with terminal illness are supposed to rest quietly in darkened rooms or lie sighing on chaise longues on sun porches or smile bravely as they murmur a few words to their nearest and dearest, right?

Could it be that Keller’s discomfort with her “obsession” with Lisa’s tweets is a reflection of society’s discomfort with death and dying? People like Lisa and like many of my brothers- and sisters-in-mets (my fond term for people who have metastatic breast cancer)—people like me—cause discomfort to some because we dare to bring our experience into the full light of day. We cause discomfort to some because we are living, living in acute awareness of our impending death, living in pain but living as fully as we can while we are dying.

I write because I am a writer. I’ve used words to try to understand and express my inner world since I was seven years old when I wrote an extended metaphor based on the life cycle of a silk worm. My writing has (thankfully) become more sophisticated as I’ve grown older and has become more of a consciously used tool of introspection. I suspect that is the case with many of us bloggers and, dare I say it, journalists.

Should we stop writing just because we are nearing the end of life? Should we forego the social interaction that is made so difficult by our physical condition but is facilitated through the new media? Should we lock ourselves away in a figurative darkened room so as not to chance disturbing the hale and hearty with thoughts of death?

This is not a question of ethics, Emma Keller; it is a social issue and an eschatological question (in the larger sense). It is not a social gaffe on the level of funeral selfies; it is an expression of our humanness, of our being as a social animal. Most importantly, it is not for you or anyone else to judge the decision of a dying woman.

The apology you owe to Lisa Bonchek Adams goes far beyond not having “given her advanced warning about the article”.


Addendum: Lisa Bonchek Adams died at her home on 6 March 2015, surrounded by her family, including her three young children. She was 45 years old and had lived with metastatic breast cancer for eight years. 

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33 Responses

  1. Yes! Thank you, Knot. I find the Guardian piece outrageous and insulting. We need to write about our experiences and support our sisters and brothers – in mets especially. I don’t like the idea that such writing should be pushed under the rug. Discuss, share. If Keller is uncomfortable reading it, no one is forcing her. I’ve learned a great deal from reading about others’ experiences. And it helps us to know we aren’t alone in what can be a very lonely experience. Grrrrrrrrr. Makes me very angry.

    ((((<3)))) to you!

  2. Caroline says:

    She is an idiot and owes an apology.

  3. The Accidental Amazon says:

    Oy!! Yes, I think you’re right, Knot. I think death and dying, and the pain and misery of death and dying, are topics with which many folks are uncomfortable. And that’s not only a shame, but irresponsible, and in a larger sense, reflects the failure of society and healthcare to deal with the realities of death and dying in an upfront, compassionate manner. It does a grave disservice to isolate anyone who is going through it themselves, as well as to the rest of us who will face death one day. One thing we can all be certain of is that we will all die. More help, more compassion, more respect are what’s needed, not criticism of how one individual is dealing with it.

  4. lissyross says:

    I didn’t find the piece all that offending, I feel a bit sorry for her as she is obviously uncomfortable with death and dying, and is very concerned with what people think of her, and is projecting that on to Lisa. I won’t speak for Lisa, but I know I don’t really care how anyone remembers me except the people I care about, the ones who love me. No one else matters. For those of us with this experience of metastatic breast cancer, you should know by now that there will always be those that are uncomfortable with this conversation.

    Whether it is acceptable to publish an individuals thoughts on their discomfort or not, I’ll leave that to the editors. If you feel the credibility of a published article influences the level of belief of the content, I can see your point, but I don’t think most ethical opinions are going to be changed by reading this. I took this more as a rhetorical piece on her own feelings of the topic, and her own unresolved issues.

  5. brindanaidu says:

    Bravo! I wish I had your eloquence. I was infuriated when I read the article in question. I began blogging because I didn’t want to be cut away from everyone else and I wanted others to see what it was like to undergo the pain of cancer. I felt her words were venemous, to say the least. Thank you so much for writing this.

  6. bethgainer says:

    “Could it be that Keller’s discomfort with her ‘obsession’ with Lisa’s tweets is a reflection of society’s discomfort with death and dying?” YES, yes, and yes. You nailed this one. That Guardian article wasn’t even true journalism. I think the author has issues of her own about death and dying. Makes her uncomfortable does it? Too damn bad. If she doesn’t like what she is reading then she should simply stop reading it. Cutting down Lisa and people with Stage IV for disclosing their lives to the world is simply mean. Also, Keller fails to see one of the reasons bloggers write: to develop a sense of community so they don’t feel so isolated. The online community is a support community.

    Brilliant, spot-on post.

  7. Thank you, Knot. The tone of that piece was incredibly rude and simply unjust. I will admit that I don’t follow Lisa’s tweets. Months ago I made the decision to unfollow her because the tweets brought me down and as a metster I want to spend my days “up”. But I still follow Lisa’s blog because I care about how she is doing and know I can learn from her experience. I won’t criticize anyone who doesn’t want to read Lisa’s writing. It is a personal choice. But criticizing the appropriateness of her tweeting is in some ways odd, but certainly unfair. I agree with you that the writer might have explored her own fascination with the use of social media by those of us closer to death than she. However there was no reason to single Lisa Adams out nor to use such a judgemental tone.

    I wish Lisa well and hope she takes some comfort from the outpouring of support she has received in the social media of late.

  8. Lisa says:

    I am so glad to see you again. I was worried about you. You are right. Ms. Keller. She is uncomfortable with death and with the pain of cancer. This is just more of the same wrap it up in a pink ribbon and make it pretty for us. Breast cancer isn’t pretty, and a third of us will either die with it or from it. This truth needs to be told.

  9. dorry says:

    well said. thank you.

  10. Cristine Cosgro says:

    Alright, there it is. Thank you for putting it out there and trying to correct some wrongs. While Ms. Keller is entitled to her opinion, she did not need to do so in the mean-spirited manner of that article.

  11. eak13 says:

    I too didn’t find the article offending more of someone who was not comfortable with the whole dying process. Let’s keep in mind many of us are thrown into the “death watch” getting to know and observe a fellow blogger who was doing fine then suddenly the blog takes on a different tone. you know death is coming… I think back to a friend of mine who had Mets but hers were external and it grew on the outside of her body that was positively the most hideous thing anyone could see yet she did not hesitate posting her photos showing This is what she has, this is what’s killing her. You could see the progression of her disease it made us realize what she was having to endure. this brings up the attitudes of dealing with Breast Cancer. So often people only know what they hear and not see through observation that this Cancer is odious, painful, there are horrendous Side effects associated with it. Breast Cancer is NOT PINK!! It is painful debilitating, while reading her tweets or blogs fascinated at the same time. We are reading someone who will die! There is also a catharsis in writing, imagine being on the other end of the disease watching it take over your life painfully., in some way whether you call it a selfie or just help in the better understanding of what a terminal person is dealing with remember once these topics were taboo what wasn’t discussed – out of sight out of mind that didn’t make it less of a reality. The word CANCER made people cringe! Never admit that you or a family member actually had it!!
    The author was expressing her thoughts and mixed in between reading through we could feel her discomfort. Do it long enough no worries, you’ll get used to it….. We did we don’t have much other options..

  12. Lori says:

    Your response is spot-on and I’m grateful you could so it because I’m still too stunned to address the underlying issues! Perhaps Ms Keller needs to write just as we do – writers write. I believe it was a poor choice to use this vehicle as a means of exploring her own voyeuristic tendencies and the shame she obviously feels about death. However, I believe the editors of The Guardian are, too, responsible for the distribution of a piece that expresses little more than petty jealousy of someone who so honestly sheds light where there is mostly darkness.

  13. nancyspoint says:

    Well said. The topic of death and dying makes people very uncomfortable. I think the backlash has been a bit of a surprise to the “big wheels”. Thanks for your insights.

  14. I just wanted to say thank you and that I agree. Parts of society seem very determined to censor all evidence of mortality. It’s a foolish and narrow way of thinking.

  15. Maxine D says:

    What a brilliant article Knots – I love what you have said and how you have said it – community is important, the more so when you are isolated, and if your community happens to be via social media, then so be it. I often refer to my computer as my ‘social life in a can’ as I am isolated by another’s illness.
    Yes people are uncomfortable about the realities of others impending death in our youth orientated society (once you are over 55 you are invisible, should you be seeking employment). In fact I think that some/most people would rather not be reminded of their mortality!

    As for the writers attack on Lisa Adams – whatever happened to freedom of speech, or is she the only one allowed to express herself in her ego-centered world?

    Great to ‘see’ you here again and speaking so eloquently.
    Blessings and prayers

  16. Susan says:

    This is so well said. I thought that Emma Keller’s piece was so cruel. I just wanted to ignore it because there’s a part of me that thinks she intended to upset people and likes that she got attention for her heartless point of view. If the realities of this disease make Emma uncomfortable that’s her problem. I am still so offended by her writing so negatively about Lisa’s tweets. If she doesn’t want to follow Lisa on Twitter she doesn’t have to, but where does she come off acting like a social media bully? Thank you for exposing the truth and writing so eloquently about this.
    Hugs and xoxo-

  17. I for one am extremely grateful for your blog. There is a huge amount of healing to be had from feeling that your not alone in any experience. Your introspection’s have continually given me insight’s that made the last year of my sister-in-laws life more bearable for us both. Thank You.

  18. In the end death and dying is part of life 101 as i call it. Social media-ing about it is beyond me.

    We never talked about a child dying before Jeremy passed. Thank GOD we didn’t see it coming and also Thank GOD no one i know of was twittering, or snapping selfies, or photos of the proceedings. Because if they had been, it wouldn’t have been pretty.

    Respect for the dead and dying i might add is a requirement in my world anyways.

    Having said that, i am very glad to see my friend (((((((((((((((KNOTS)))))))))) here blogging. Several of us were worried when we didn’t see her for awhile in past month or so.

  19. Lisa says:

    The post has been removed. It says “This post has been removed pending investigation.”

  20. Caroline says:

    Emma’s post has now been taken down! I am off to read her husband’s take. If they haven’t had cancer, they have no idea and should shut up.

  21. RomanHans says:

    I’m with you: the Keller’s pieces were so nonsensical it boggled my brain trying to organize the errors. Thanks so much for addressing this in a thoughtful manner: a much more thoughtful manner than these self-possessed, shallow people deserve. I can’t believe they say cancer patients who tweet are “self-medicating.” Because, you know, I’m pretty sure they depend on the DRUGS AND RADIATION for that. And personally, I’m thinking their 50,000+ words of pique could have been avoided with the words, “UNFOLLOW HER, YOU IDIOTS!”

  22. hjelmstd says:

    Once, when I felt hurt by someone’s insensitive remark, my therapist said, “Does that say more about you – or about him?” I felt instantly comforted and often repeat that thought to myself as needed. On the other hand, I can’t imagine why the article was written or published.

  23. Joanne brennan says:

    Thank you Knot and Lisa! We’ve been dying quietly for too long now.

  24. The unbelievable thing is this woman had DCIS and BLOGGED it. In fact, she said that she was so upset that she went on anti-anxiety medication from the diagnosis. She told her doctor, after her treatment had ended, in tears, that she “couldn’t take it anymore.” Her talked told her that she did not have cancer and she was cured, but the woman was hysterical.

    Like you, I have blogged my experience with metastatic cancer from the beginning. I do it because now, it has turned into comfort for many. I get letters daily asking for my help. I also want people to know that breast cancer is not all pink ribbons and races – that some of us actually die from it.

    It angers me that a woman who could not handle a DCIS diagnosis with grace has the nerve to chastise a woman living with mets. That women did not only attack Lisa, she attacked all of us who have spent time sharing our experiences.

    Isn’t that what writers do? It’s what SHE did.

    I’ve linked up to this post on my blog and maybe you could link back to mine and others. We can get a link round-robin going and educate this NY elites who think they know how to handle cancer better than we do.

  1. 14 January, 2014

    […] an eloquent rejoinder from the author of Telling Knots, herself a Stage IV cancer […]

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