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| © Gayle Sulik PhD Pink Ribbon Blues |
The article I'm referring to was written by the indomitable Gayle A. Sulik, PhD (author of Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health and founder of the Breast Cancer Consortium)...
The piece Sulik penned appears in the August 2013 edition of the Virtual Mentor, the American Medical Association's online ethics journal and is entitled, "What Cancer Survivorship Means." My favorite Sulik soundbites are below. (To read the Virtual Mentor story in its entirety, just click here.)
- "Many cancer survivors do not actually survive cancer: Just over half of people labeled as 'survivors' ultimately died of cancer. This contradiction creates confusion about the meaning of survivorship."
- "There is an odd impression in American society that cancer is a passing inconvenience for most, an opportunity for personal growth for all, and a badge of honor for those that 'survive."
- "Stories about courageous survivors abound, but the realities of many people’s lives look nothing like the celebratory events, sound bites, or marketing materials that pervade the cultural landscape."
- "Fundraisers and public spaces brought cancer survivors to the forefront as audiences sang songs and purchased survivor gear. While the celebration resonated with some, it left the difficult realities of cancer on the sidelines, isolating those with terminal conditions and creating a backlash against survivorship culture itself."
- Optimistic attitudes "may help people to feel better emotionally," but they don't "positively impact cancer progression or survival... People who think positively get cancer and die from cancer at the same rates as people who do not."
- "Tragically, the image of the triumphant survivor who cheerfully lives on suggests implicitly that those who do not survive were simply not optimistic enough."
- "Survivors of all types want to be heard, want control, and want choice. More than anything else, they want health, longevity, and quality of life."
- "Until health practitioners become actively involved in survivorship at all levels of care ... survivors will continue to 'see cancer reflected endlessly around them like a hall of mirrors.'"
Thank you, Gayle Sulik, for this incredible piece and for your commitment to patient advocacy and to the breast cancer community at large.
I haven't read Gayle's book yet, but I feel as if I have, having absorbed so many of her important messages through the blogosphere and Gayle's blog too. You highlight such great points in her post Renn - thanks for doing so.
ReplyDeleteThe soundbites are from her Virtual Mentor article, which covers much ground — and very succinctly!
DeletePS Thanks for the nod in your weekly roundup, Marie!
Thanks for this post! This subject will continue to be discussed (as it should be) for many reasons. And because there are different "parts" to the picture, it probably won't be resolved quickly or easily.
ReplyDeleteThere exists in the public, a perception of what "survivors" are...that they are "free" of cancer or that they "beat" it. I agree the pink ribbons have something to do with this, and I wholeheartedly agree that public education is needed to explain that there is no cure for cancer. To people who say to me "so you beat your cancer?" I say "the only way to know if I beat it is if I die of something else". This usually comes as a surprise, but it opens a discussion on survivorship which thankfully, because of books like this, is being brought out for discussion. Contrary to the public's perception, we unfortunately are not winning the war.
Then there is the controversy among those who have been diagnosed with cancer about the word "survivor". If you are diagnosed with cancer, and you are still breathing, you are a survivor technically. Whether you choose to use that term or not is your choice. Some feel that "survivor" means that you've been there done that and have moved on. Other loathe the term because they are still living with stage IV and feel that the term doesn't fit their story.
You chose the part that states: Optimistic attitudes "may help people to feel better emotionally," but they don't "positively impact cancer progression or survival... People who think positively get cancer and die from cancer at the same rates as people who do not."
The same holds true for pessimistic people. The question then becomes :Do you want to be happy, be present for your loved ones and live fully in the time you have? or just go on until you die? This question is not limited to those with a cancer diagnosis. It applies to everyone on this earth.
True optimistic attitudes don't impact progression or survival, but a survivor's attitude might. A survivor's attitude means you will use every tool you can find...diet, mind/body spirit connection, exercise as well as positivity etc. to make the life you are living, however long, no matter what stage of cancer you are living with, the best life it can be. You have a choice.
Thankfully, the medical community is taking notice of the needs of survivors and cancer "rehabs" and survivorship programs are rapidly growing across the country to help those with a cancer diagnosis deal with the many aspects of the disease from every angle.
It's great that books like Gayle's can encourage an exchange of ideas and eventually positive change! Thanks for sharing!
Hi Sisterearth, thanks for reading and for taking the time to share your thoughts.
DeleteChoice is the operative word in how anyone handles a cancer diagnosis — or any crisis, for that matter. Yet the very definition of the word choice ("an act of selecting or making a decision when faced with two or more possibilities") is also defined by the limitation of possibilities from which one has to choose. (If that makes any sense.)
Simplistically, it's safe to say we all have a choice how we feel in any given moment. There are as many reasons why feeling more positive than negative (or vice versa) may be easier (or more difficult) for folks as there are people in this world. Everyone's set of circumstances + reactions and coping mechanisms + available solutions to said problems + economic factors + support systems + mental health + emotional and physical energy = how we manage to squeeze the most out of life as we can.
I think most people would love to feel better and get the most out of life that they can. The issue is not *desire* as much as it is the marriage of all the things I mentioned above.
Attitude (positive or negative) is simply not that simple. A "survivor's attitude" is as personal as the person owning it.
Thank you for sharing your thoughts on this always interesting and ever-insightful topic!
Renn I love and respect you and thank you for being so diplomatic in your response :) I certainly am not implying that we should all just "put on a happy face" and go on. If you want to feel better, the choice to seek out and adopt daily actions to reach that goal is yours. Happiness and peace of mind is not something you would put on like a new shirt. it's something you work at....every day, but there always will be the choice to do the work..
DeleteBut if you don't believe that, than you won't achieve that.
Feelings, (whether they are mine or yours) can't be wrong and I appreciate the exchange here and do so with an open heart. I just want people to know that there is something you can do to change the way you feel...physically and mentally. If you want it, it's there.
I invite you to read the following blog post if you care to:
http://perksofcancer.com/2013/07/27/a-tribute-to-beck-the-girl-who-believed-in-miracles/
She kinda sums it up.
Great discussion! Thanks for allowing me to share your space. I am truly honored.
That's the beauty of the blog: there is a place and a space for everyone. :-)
DeleteAnd I am honored right back! TY.
Thanks for the post Renn. I've never like the word "survivor" or the phrase "lost her/his battle with cancer" .. . going to go read the rest of the story now.
ReplyDeletexoxo
Shannon! Always a great day when I see a post from you! And I agree with you.
DeleteHope you are feeling better.
xoxo
A really great post Renn... I haven't read the book and think I will download it tonight. I like all of her points.
ReplyDeleteMaesday, the sound bites I mention above are from Gayle's article (not her book), though her book is an important read too!
DeleteThank you for stopping by. :-)
Renn these are great soundbites from Gayle Sulik's article. I particularly find the idea that if someone doesn't survive it would imply they weren't optimistic enough particularly disturbing. Lots of thought provoking ones here. I still don't know what the right term should be though. This disease is so complex.
ReplyDeleteHi Susan!
DeleteYes, cancer is SO very complex, just like the people it afflicts.
I haven't settled on a term I like either. And I share your discomfort regarding the power of optimism.
Thanks for commenting, your bloggy support is always appreciated!
What a fabulous article. While reading it, I kept saying, "Yes! Yes! Yes!" Thanks so much for sharing it.
ReplyDeleteHey Eileen! Thanks. I agree!
Deleteawww, geez renn - so much food for thought, and I appreciate the insight, the dialogue and your responses. but my brain this evening has reverted to pea size, and I can't think of much to offer. only this; if we are at all inclined to be dissatisfied with how our emotions and thoughts adversely affect us, as both hugh and I were at many crossroads with conflicting direction, there's an awful lot of peeling down the layers to see which way to go. just the act of discussing, then backtracking to pinpoint what is problematic in our thinking can, I believe, lead to some attempt to change our thinking. but the thing most people do not understand is that there is the overwhelming complexity of change that is constantly occurring. it is exhausting, confusing and often does not lend itself to be able to be put into a cogent question. however, simply engaging in this kind of process, even if we can't come to the finer parts of a conclusion is worthwhile. it empowers us, gives us a basis for thinking through the next problematic mode of thinking and feeling, and opens us up to things like the marvelous sound bytes from gayle's
ReplyDeletearticle. we may not be able to whip up a by-line for every set of circumstances, but sometimes we can have the reward of seeing just what we wish to accomplish and look for the just-right inspiration to come along and help us refine it. it's a process, a work in progress, and it comes down to INDIVIDUALS who are all unique - the one-size-fits-all will never fit all. and I do agree that the medical community needs to pay more attention to the limited options so many MBC patients who have sadly been consigned to isolation and despair. renn, that is all my brain can render at this time. I hope it makes even a modicum of sense. thank for such a timely and important post.
much love,
Karen XOXOXOX
Renn,
ReplyDeleteThese are great parts you chose from the article. What gets me riled up is when people who die from the disease are said not to have been optimistic enough. As if it is their fault they didn't survive. Sulik's book, Pink Ribbon Blues, really opened my eyes as the the culture of the pink industry. Thank you for addressing all of these points.
May I add a book recommendation?
ReplyDeleteI'm currently reading Dreaming in Hindi by Katherine Russell Rich. She's living with cancer and when she last went into remission (and was fired from her job) she packed up and spent a year in India studying Hindi. So far I'm enjoying the book so much. If you get a copy be sure to get the latest version (not the original which is very poorly edited). http://www.amazon.com/Dreaming-Hindi-Katherine-Russell-Rich/dp/0618155457/ref=pd_sim_b_2
I see that she has another one called The Red Devil about her experience living with cancer. Has anyone read that one?