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”.

Respect

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Call for posts: Reminder

Anyone who is affected by metastatic breast cancer is invited to submit a post for me to publish during the month of October. There is some background in a post from two weeks ago, We are the 30%.

This is an invitation to

  • women living with metastatic breast cancer
  • men living with metastatic breast cancer
  • spouses/partners/close friends of people with metastatic breast cancer
  • children and siblings of people with metastatic breast cancer
  • caregivers of people with metastatic breast cancer
  • anyone affected by metastatic breast cancer

You are welcome to write a new post or use one that is already written.

Guidelines:

  1. The post should be between 500 and 750 words about your experience with MBC.
  2. Posts can be in English, French or Hebrew. (I’ll be happy to translate the French or Hebrew into English and publish both languages.)
  3. Please include a few words about yourself that I can include with your post.
  4. Send it to me at knotellin11@gmail.com

Remember: They won’t know if we don’t tell them!

"Empty Promises" is used by the kind permission of the Accidental Amazon. Thank you!

“Empty Promises” is used with the kind permission of the Accidental Amazon. Thank you!

We are the 30%

30Well, my friends, it’s almost here. Drum roll, please…. Pinktober! Yes, in two weeks Breast Cancer Awareness Month will start and we will be inundated with all sorts of well-meaning pink messages about “saving the boobies”. I’ve written about this before–and I’m sure I will again. 

I’m not against breast cancer awareness, of course not! But I think we’ve moved on to another stage now, the stage where we need to focus on breast cancer treatment and prevention.

My  main issue with Pinktober, though, is that the many associated campaigns overlook the fact that breast cancer is not cute: it is a serious disease. Thirty percent of all people who are diagnosed with breast cancer–no matter at what stage–develop distal metastasis, advanced cancer, and (in the present state of medical knowledge) will probably die from it.

Thirty percent.

This year during the month of October I am going to feature guest posts from men and women who have metastatic breast cancer. Jody Schoger, breast cancer advocate and sister-in-mets, gave me this idea and I love it!

I’d love for everyone with bc mets to participate this month. You can write a post or share an old one. If you are uncertain of your writing skills, we can do an interview. It can be in English, French or Hebrew. Please tell me in the comments or by email (see sidebar) that you are interested. Pretty please?

Help Wanted!

HELP WANTED!

I am putting together a page of metastatic breast cancer (MBC) resources for the blog. Do you have a favorite site about MBC (or a general site that has a section for MBC)? Please post a link in the Comments and I’ll see if it can be included.

Sites can be:

  • informational
  • blogs
  • forums/discussion boards
  • (something I haven’t thought of)

If you have sites that are not in the USA and/or are not in English, please let me know about them, too! We are an international community!

Thanks so much for your help.

The Electrician Didn’t Come

The urge to write has its own mind, body and force of will. Holding it back would be like stopping a flood with a spoon.I want to write a blog post today, but I don’t have a topic. I mean, it’s not like there aren’t plenty of topics floating around. I could just reach out my hand and grab one, but none of them are really calling my name. Yet I have the urge to write.

When I get the urge to write, it’s like needing to sneeze. No way on God’s green earth am I able to repress it. It’s got to come out. Even on those rare occasions when I’ve been without computer or paper and pen I’ve “written” essays or articles or poems or songs in my head because when that writing feeling comes upon me, I have to write. No way around it.

So I need to write, to scratch that itch, to sneeze, to breathe deeply because I suddenly realize I’ve been holding my breath. That’s what it feels like.

Let’s see. I could write about my last unpleasant encounter with my oncologist, whom I generally like, but I don’t feel like getting into all that right now.

I could write about my garden, which is looking much better since I fixed the computer-timed irrigation that had somehow gotten turned completely off. Funny how regular watering improves the look of a garden in summer. But that’s not a whole post.

I could write about my struggles with myself—my pride, my skewed self-image—in terms of accepting the limitations of my illness, using my walker, taking medicines as prescribed instead of deciding I know best. (I generally take far less pain relief than the doc wants me to, for example.) But I’ve been there and written about that so many times.

I could write about some new interesting research developments in the world of cancer treatment in general and breast cancer research in particular, but I’ve come to realize that I’m a poor science writer. (Oh! Does anyone have any ideas on how to learn to do that well?)

I could most certainly write about certain political developments in my country and around the world that make my blood boil, but I’ve pretty much decided to stay away from politics in this blog. I don’t want it to become divisive.

So then: what shall I write about?

The electrician was supposed to come to fix a couple of things this morning, but it turned out the police had my part of the city blocked off. I heard the helicopters and sirens, but I don’t know what happened. Anyway, the electrician couldn’t get through. He’ll come on Tuesday.

While I was waiting, though, I was able to go out into the sun and trim back the sage that is growing over the pathway next to it. I can’t do much gardening at all these days, so it was fun even to go out with my walker and lean over and do a little bit of trimming. I enjoyed the sun and the smell of the flowers and herbs and the sounds of the bees and the birds and the feeling of the herbs on my hands and my fingers in the dirt.

My new medicine is causing some nausea (an expected and transitory side effect), so I took a piece of chicken out of the freezer to defrost. I’ll make some chicken soup and rice or something like that later on, I guess. I’d like to have a salad or gazpacho, but I’m not sure my stomach would handle it.

Here you are: over 600 words about nothing because the urge to write came upon me. Does this happen to you, too? And as long as we’re talking, is there anything you’d like me to write about the next time I get the urge and I’m light on topics?

ANNOUNCEMENT: I am not dying yet

My most recent post was a reblog of “Starting to see the light” from the blog “Living Life to the Fullest from End Stage”. There is a sentence stating that at the top, above the graphic. It was not my post.

But the WordPress reblogging layout is confusing. I apologize. The next time I reblog, I will not do it by clicking on the button.

I reblogged that post because I thought it was beautiful and I hope that when my time comes that I will have something of that approach and attitude. I am not at that point yet.

I am deeply sorry for the confusion and for any pain that may have been caused.

My oncologist and I

choosedocEarly in July I have an appointment with my oncologist. She is younger than I, but more and more people are these days. Her father is an extremely well-respected doctor in his field, a longtime member of the Israeli medical elite. I don’t think she rode on his coattails throughout her training, but there is something of the aura of the elite that hovers around her. She and I do not have a natural affinity, but we have mutual respect.

I had no idea of how to choose an oncologist. The way it worked was this: After the biopsy confirmed the diagnosis my family doctor referred me to a surgeon. I didn’t really care who the surgeon would be because I knew what procedure I would have, and it was a pretty standard one. A day after my mastectomy, the hospital’s breast cancer nurse came to talk to me about, among many other things, choosing an oncologist.

By the way, a word about breast cancer nurses. I’ve come in contact with two, at two different hospitals, and could not be more impressed. Both had advanced nursing degrees, as well as a doctorate. Both were knowledgeable, caring, funny, supportive, respectful of my level of knowledge, and empowering. They gave me all the time I wanted, provided multiple ways of getting in touch with them, and “followed” me as long as I needed. I am confident that even today, years after my last contact with either of them, I could call either one and get whatever I need. Breast cancer nurses rock, if these two are anything to go by!

So the BCA nurse came to my room on the post-operative unit. When she arrived, a couple of friends were at my bedside, both of them nurses at the same hospital. She stayed and exchanged pleasantries with them for a few minutes, and they left to go to work. Then she told me her story.

This particular BCA nurse had had breast cancer herself and at that time was NED (no evidence of disease). She told me the story of how she had felt and reacted, not too much detail, but enough to help me feel more comfortable. We had a good connection. She gave me a lot of new information that day, and she gave it to me in a way that I could take in. One of the nicest things about her, was that she did not appear to mind pausing while I made notes, considered what she had said, formulated questions.

We got to the part about choosing an oncologist. She asked me what I wanted in an oncologist and we talked about that for a bit. She told me that she could think of two oncos who would fit: one was a professor and head of department, the other a senior attending at a very young age. In terms of professional skill, she said, they were pretty much equals. I asked if either had a sense of humor. She laughed and told me to stay far, far away from the professor. So I chose the other one.

I have always had the option of switching to a different onco, and I still have that option, but so far feel no need to go shopping for another one. We are not people who would hang out together, but that’s fine; this is not the nature of our relationship. She is quite decidedly non-religious, and I am quite decidedly a religious woman. Far from being a source of conflict, this has led to some fascinating conversations during the exam. I still remember a great exchange of ideas about expressing solidarity with the poor and marginalized of society. Once I got over the idea of talking about such things while I was wearing only underpants (gowns are often not provided for exams here), it was a really good exchange.

Also, she has the courtesy to laugh at the feeblest of my jokes. What more could I ask for?

 

Metastatic breast cancer as chronic illness

Please, please, please read Scorchy Barrington’s latest post “Chronic Illness”.

Scorchy has outdone herself in this valuable post. Starting from the point of her mets diagnosis just a few months ago, she continues with a critical reading of the Komen organization and then moves smoothly to Peggy Orenstein’s brilliant article in the New York Times  “Our Feel-Good War on Breast Cancer,” (Sunday Magazine,New York Times, April 25, 2013) and a review of Laurie Edward’s book In the Kingdom of the Sick: A Social History of Chronic Disease in America  (New York: Walker, 2013).

I am not going to attempt to recap the post. Just go on over to The Sarcastic Boob and read it for yourself.

Voices of the 30%

30Here’s an idea.

I’m wondering if anyone else would be interested in a blog by and for people affected by Stage IV breast cancer. My vision is that a core group of two or three (more if interested) people would commit to writing one post a week and manage the blog together.

In my vision, the blog would be a venue for both “30-percenters” and their loved ones and carers. It would be a place for talking about feelings, challenges, successes, but also for sharing information (reliable, verified information) about treatment, activities of daily living, and anything else that affects us.

What do you think? Does this sound like a good idea? It’s okay if it doesn’t. It wouldn’t be the first time in my life that I get carried away. But if it does sound like a good idea, please share in the comments how you see such a blog. If you would like to be personally involved, please write me at the address under “Contact Me” in the sidebar.

Where are you from? (2)

The last time I posted Where are you from? was in March of 2012, about ten months ago. At that time, seventeen countries were represented by Telling Knots readers. As of today, we have had visits from 138 different countries! Isn’t that astounding?

Thanks to all of you for reading my posts, for commenting and sharing your opinions, for your encouragement, support and suggestions, for the links you’ve posted. I’m having a great time!

Here is the list (country and number of views in the last twelve months), as compiled by WordPress.com’s statistics machine:

United States FlagUnited States 7,761
Canada FlagCanada 1,070
United Kingdom FlagUnited Kingdom 794
Israel FlagIsrael 681
India FlagIndia 349
Australia FlagAustralia 303
New Zealand FlagNew Zealand 290
Philippines FlagPhilippines 261
France FlagFrance 228
South Africa FlagSouth Africa 181
Italy FlagItaly 180
Germany FlagGermany 173
Mexico FlagMexico 122
Indonesia FlagIndonesia 122
Romania FlagRomania 121
Netherlands FlagNetherlands 105
Turkey FlagTurkey 103
Spain FlagSpain 100
Brazil FlagBrazil 94
Thailand FlagThailand 91
Malaysia FlagMalaysia 86
Egypt FlagEgypt 82
Switzerland FlagSwitzerland 82
Belgium FlagBelgium 80
United Arab Emirates FlagUnited Arab Emirates 74
Portugal FlagPortugal 68
Poland FlagPoland 63
Greece FlagGreece 63
Sweden FlagSweden 58
Hong Kong FlagHong Kong 55
Singapore FlagSingapore 54
Korea, Republic of FlagRepublic of Korea 52
Russian Federation FlagRussian Federation 51
Denmark FlagDenmark 50
Pakistan FlagPakistan 45
Taiwan, Province of China FlagTaiwan 44
Saudi Arabia FlagSaudi Arabia 43
Ireland FlagIreland 42
Slovenia FlagSlovenia 39
Ukraine FlagUkraine 37
Japan FlagJapan 37
Argentina FlagArgentina 34
Colombia FlagColombia 30
Slovakia FlagSlovakia 29
Serbia FlagSerbia 28
Austria FlagAustria 27
Czech Republic FlagCzech Republic 27
Bulgaria FlagBulgaria 25
Hungary FlagHungary 24
Finland FlagFinland 21
Norway FlagNorway 21
Lithuania FlagLithuania 20
Croatia FlagCroatia 19
Chile FlagChile 19
Georgia FlagGeorgia 17
Jordan FlagJordan 14
Sri Lanka FlagSri Lanka 13
Iceland FlagIceland 12
Latvia FlagLatvia 12
Moldova, Republic of FlagMoldova 12
Lebanon FlagLebanon 11
Peru FlagPeru 11
Ecuador FlagEcuador 10
Estonia FlagEstonia 10
Morocco FlagMorocco 10
Jamaica FlagJamaica 10
Myanmar FlagMyanmar 10
Puerto Rico FlagPuerto Rico 10
Costa Rica FlagCosta Rica 9
Viet Nam FlagViet Nam 8
Trinidad and Tobago FlagTrinidad and Tobago 8
Montenegro FlagMontenegro 8
Tunisia FlagTunisia 8
Cambodia FlagCambodia 8
Mongolia FlagMongolia 7
Malta FlagMalta 7
Honduras FlagHonduras 6
Bangladesh FlagBangladesh 6
Qatar FlagQatar 5
Sudan FlagSudan 5
Macedonia, the former Yugoslav Republic of FlagMacedonia, the Former Yugoslav Republic 5
Luxembourg FlagLuxembourg 4
Bahrain FlagBahrain 4
Algeria FlagAlgeria 4
Maldives FlagMaldives 4
Réunion FlagRéunion 4
Panama FlagPanama 3
Mauritius FlagMauritius 3
Albania FlagAlbania 3
Azerbaijan FlagAzerbaijan 3
Guatemala FlagGuatemala 3
Nepal FlagNepal 3
Côte d'Ivoire FlagCôte d’Ivoire 3
Kuwait FlagKuwait 3
Ghana FlagGhana 3
Tanzania, United Republic of FlagUnited Republic of Tanzania 3
Iraq FlagIraq 3
Aruba FlagAruba 3
Korea, Democratic People's Republic of FlagDemocratic People’s Republic of Korea 3
Nigeria FlagNigeria 3
Venezuela FlagVenezuela 3
Dominican Republic FlagDominican Republic 3
Cyprus FlagCyprus 3
Brunei Darussalam FlagBrunei Darussalam 2
Cameroon FlagCameroon 2
Lao People's Democratic Republic FlagLao People’s Democratic Republic 2
El Salvador FlagEl Salvador 2
Armenia FlagArmenia 2
Saint Lucia FlagSaint Lucia 2
Palestinian Territory, Occupied FlagPalestinian Territory, Occupied 2
Oman FlagOman 2
Jersey FlagJersey 2
Kyrgyzstan FlagKyrgyzstan 2
Guernsey FlagGuernsey 2
Belize FlagBelize 2
Grenada FlagGrenada 2
Syrian Arab Republic FlagSyrian Arab Republic 2
Uruguay FlagUruguay 2
Bahamas FlagBahamas 2
Kenya FlagKenya 1
Senegal FlagSenegal 1
Macao FlagMacao 1
Nicaragua FlagNicaragua 1
Barbados FlagBarbados 1
Åland Islands FlagÅland Islands 1
Guadeloupe FlagGuadeloupe 1
Madagascar FlagMadagascar 1
China FlagChina 1
Afghanistan FlagAfghanistan 1
Ethiopia FlagEthiopia 1
Mozambique FlagMozambique 1
Libya FlagLibya 1
Bosnia and Herzegovina FlagBosnia and Herzegovina 1
French Guiana FlagFrench Guiana 1
Yemen FlagYemen 1
Cayman Islands FlagCayman Islands 1