Showing posts with label gayle sulik. Show all posts
Showing posts with label gayle sulik. Show all posts

Wednesday, March 9, 2011

How To Change The Conversation

Recently, there's been a lot of talk on this blog and others, about "changing the conversation" in the way that we, as a society, think about breast cancer and the culture surrounding it.  


What's becoming clearer to me, as I delve deeper into the vast online breast cancer community, is that there is a growing feeling, and what can best be termed as a movement to demand a refocus of existing priorities within the breast cancer fundraising world, and for certain breast cancer organizations to recalibrate their messaging about the disease itself.  There's growing support for the notion that it's time to start telling the truth about breast cancer, and move away from the pink ribbons and the pretty pink feel-good breast cancer experiences that seem to have become the norm, when portrayed to the general public.   

When I have discussed pink culture and breast cancer fundraising on this blog I often receive comments from people who are demonstrably incensed and want to know how our demands for change can translate into meaningful and tangible action.  Here's a small sample;


I'm beyond angry. Your work has opened my eyes even more. What do we need to do to make a change? and make a difference. This is so frustrating! Keep up the great work.

I'm offended by the Race ad. What the f? Why are they making it seem like something women should aspire to? It's cancer! The ad should have the other photo. That's what we're fighting for. I'm sorry, you didn't hear any answers worth your time. I'm sorry Komen continues to miss the boat on research dollar allocation. What's it going to take?

Unbelievable! I'd not heard of this pink town thing. I just feel deeply weary about this.... it doesn't change anything. Awareness? Tell me who doesn't know about breast cancer?

Your snark is delicious. This campaign? Not so much. Absolutely revolting. What fund will the donations benefit? Who's supervising? What a waste of time, energy, and altruism. Keep complaining; I'm with you.

Thank you for sharing these other voices. I applaud these women for taking a stand. I don't mind the "pink stuff." I just want MORE. When the "pink stuff" gets in the way of MORE, than I DO NOT like it and it seems that is what's happening of late. "Money talks" as they say, that's why I'm trying to encourage people to ask where their donated dollars are going in my post today on this same topic. It is time to change the conversation, move beyond the "pink stuff," demand more research and get more done on the goal of eradicating breast cancer.

[W]e need to do something to call attention to our problem (breasts chopped off, horrible drugs, intense pain, you name it). The best way is do that is get traction in the actual media. We need to forward stories about this to the health reporters at regular and/or cable news networks, magazines, newspapers and Internet sites including to the reporter above. Komen does this so to why not beat them at their game. If there is walk in your town, send an announcement to the news stations that your friends are sponsoring a stay at home and sending money to a better organization. Does anyone have media contacts? Do your friends? Spread the word. What about your doctor? My doctor resigned from the local American Cancer Society board. Can't we all do some lobbying with the medical personnel that we come in contact with. We also need to start asking rude questions like why isn't there more met research. What are they doing to push that forward effort forward. Did they report you to NHI? Why don't they sponsor local trials? The unions in Wisconsin know that a good media shot is protesters beseeching the capital (truth in writing if they don't win, we all might as well ship everything to China). It is worth a lot of publicity. Where is Komen located? What if we had people picketing in front of their offices with signs that say, "Stage IV BC Where's My Cure?" The same goes for Congress. The Breast Cancer Coalition collects funds to lobby Congress. They're too polite. Wouldn't it be better for their local affiliates to request appointments back to back with their local politician on their home turf. I'd say picket but most these offices have security that won't allow it. Something a lot easier is to start is a Facebook campaign and pass that along to everyone to get people to post or like. Has anyone thought doing a Twitter campaign where everyone starts Twittering at the same time on the same topic like, "Not Pink."If we start trending on regular basis we could really pique the media's interest. Sorry about this. I am sick of swapping notes on treatments. I don't want to fade out without a damn thing to show for the screwing that I have gotten (and not in a literal sense).....

Today, Gayle Sulik, author of Pink Ribbon Blues has published a "Tools for Action"; a comprehensive list of ideas of how we can go about "changing the conversation" in our everyday lives.  I encourage everybody to take a few minutes to read this list, think about what you can do, add your own ideas, and share it with your own communities.  These actionable items are the kinds of grassroots efforts that can lead to a major sea change  and compliments the advocacy work of organizations like the National Breast Cancer Coalition and Breast Cancer Action.

Come on.  We can make a difference, each and every one of us.

Monday, February 14, 2011

Miss Pink Elegance

This essay was created in collaboration with a group of writers and advocates who are deeply concerned about the lack of progress being made in the eradication of breast cancer.  We believe that it is time to look beyond the feel-good messages and demand real change.  

You may reproduce this article, in its entirety.  You may not make changes to it and you must include this attribution and a link back to the blog that posted it.  

We encourage you to spread the message and to take a stand.  Thank you for getting involved.   

This post is republished on this blog via Uneasy Pink.

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Recently, a story about an upcoming fundraiser appeared in a Pennsylvania newspaper.

A local Susan G Komen for the Cure Foundation® affiliate is hosting a fashion show, luncheon, and auction fundraiser later this month. In addition, they are crowning the first “Miss Pink Elegance.” Event co-chair Joanne Arduino explains:
"This year marks the first crowning of "Miss Pink Elegance," an honor that will be awarded to the guest wearing the best pink outfit...Guests can come in elegantly or outrageously in pink," she said. "The winner will be crowned Miss Pink Elegance the First. They'll get a sash, a crown and a dozen pink roses. We'll have someone who sings 'Miss Pink Elegance.' And she'll strut down the runway."

On first glance, the triteness of a fashion show and subsequent crowning seems an affront to the seriousness of breast cancer. If that’s all there was to it, this would be a simple matter of taste. Unfortunately, there's more to it. 



Sarah Horton, author of Being Sarah  had some insightful thoughts about fashion shows in her book. She references a blogger, JaneRA, who wrote about the issue of restoring femininity post-breast cancer and about Audre Lorde’s insight into the concerted effort to hide the physical impact of the disease.

"… [I]t’s the message behind this that upsets some of us. Jane refers to the central London offices of a national breast cancer charity, and the photos on the walls of the previous models, all smiling...you can’t miss the point that ‘ultra feminine, attractive, youthful and happy’ is how you’re supposed to look after breast cancer... Audre Lorde calls this a ‘conspiracy on the part of Cancer Inc’ for women to appear ‘no different from before’ and show the world that ‘nothing has happened to challenge her.' "(pg 239)
A lack of gravitas shown by this and many other pink ribbon fundraisers is only the tip of the pink iceberg. Fashion shows, parades and other celebrations are popular because people want to feel good, to believe that they can both have fun and make a difference. Kitschy fundraisers become popular and propagate. Eventually the dominant message becomes that breast cancer is a playful celebration; that women can not only be restored to a societal image of beauty, but that they can be better than before. In this instance, the best assimilated, most fully restored person who receives the most votes will receive a sapphire crown, a pink sash and a happy serenade. 



Harm is done to people who don’t fit this mold, who on top of having cancer receive blame for not surviving correctly. For many, the truth of breast cancer is not pretty. There are women who can’t or don’t have their bodies restored to their former glory. There are women who suffer greatly from side effects of the treatment, physically and psychologically. There are women, many women, who do not survive this disease at all. In fact, anyone who has received a breast cancer diagnosis is at risk for recurrence, for a metastatic cancer that won't be cured. And there are women who are uncomfortable, for a myriad of reasons, with the mantle of triumphant survivorship. For many women the words “guilt, frustration and anger” represent breast cancer; not “pink, fun and elegance.” 



Where do these women go for support? Who listens to them? Consider the words of Kathi from The Accidental Amazon.
"Fashion statements aside, once I became a person with breast cancer, it didn’t take long at all for me to develop a very low tolerance for all things pink. The sheer ubiquity of pink as the symbol of the fight against breast cancer is overwhelming. And one of the things that you discover... is that everyone ... seems to assume that you are now the local poster chick...everyone assumes that you have the interest, time, energy, inclination and funds to contribute to or participate in every bleeping event, cause, or group that is even remotely associated with helping everyone else not end up like you."
Kathi's realities of living with breast cancer do not fit in a festive environment. This "Poster Chick" is supposed to fight cheerfully for herself and for everyone else.

 Gayle Sulik explains in Pink Ribbon Blues.

"Telling an authentic story about an illness that is heavily laden with cultural expectations about femininity, normalcy, and triumphant survivorship requires a new way of thinking and speaking. Falling on the margins of the cultural framework, these kinds of stories can be threatening and hard to hear."  (p. 338)
Many of us, the well-intentioned and generous people who have been affected directly or indirectly by breast cancer, want to think that all of the money we’ve spent, all the tears we’ve cried, all the pink we’ve worn has made the world a better place. But few acknowledge the less-than-pink truth of breast cancer: the indignities of a disease that still kills, can happen to anyone and has no cure. The number of people dying from this disease has barely budged in decades. 



Until we change the narrative away from feather boas and pink roses, these petrifying facts won’t change. JaneRA, the blogger quoted by Sarah above, died in 2009. Audre Lord died in 1992. In fact, the WHO says that 460,000 people died worldwide from breast cancer in 2008. In Pink Ribbon Blues, Gayle Sulik states that despite more treatment given and more money spent, a woman "with invasive breast cancer has about the same chances of dying from the disease as she did 50 years ago.” (p. 159)



So where do we start?

Criticizing breast cancer fundraisers can be tricky. After all, what works for one person may not work for another. Empowering people’s authentic selves means making room for a diversity of opinions, but it also means speaking up fiercely against the agents of disempowerment. 



Apart from the complexity of nuance, it opens you up to the risk of being labeled bitter, angry or plain ungrateful. This recent blog post  labels people who question the dominant system “anti-pink.” Gayle Sulik, author of Pink Ribbon Blues.  “Anti-pink is a call to ‘think about pink’–to look at all of the outcomes of how we as a society are organizing around the cause of breast cancer, the positives and the negatives, so that we might recalibrate our actions to make the most of the positives and minimize the negatives.”



We need to make room for the darker shades of color palate. We need to think about pink. Before being swept away by feel-good celebrations swathed in pink, consumers and philanthropists should ask themselves some basic questions.



- Where is my money going?




- What has the organization done to prevent or eliminate breast cancer?




- Does this organization support people with breast cancer at all stages?




- What is the organization’s mission and how well does it live up to it?




- Does the organization use evidence to inform its actions?




- Do I want to support this organization and its messages? 



For more questions to ask, see Breast Cancer Action's Think Before You Pink website.  


The answers to these questions might be uncomfortable and unpopular, but they are the only way to get to the truth and, ultimately, progress.



JaneRA
1949-2009
Consider JaneRA’s final words in her posthumous post.

[N]ot for you are the appearances in Fashion shows…airbrushing the reality of this disease into some designer must-have condition. You will decide on a harder more radical route … a movement will begin to challenge governments, and research scientists, the medics and the charities...


Winding forward to say 2050, I hear you talking to your grandchildren about the old days when breast cancer still killed, and generations of women died years too soon.

Now we have a choice. Will we put our heads in the pink sand and lull ourselves into believing that fashion shows are good enough, or will we stand up and demand real change?

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Saturday, January 1, 2011

The Can-Do Spirit

"You can do this.  You'll get through this".  These words, gently spoken to me by my oncologist, Dr WW, when I was first diagnosed in 2004 and facing the prospect of life-altering surgeries and a debilitating chemotherapy and treatment regimen.   And DrWW has continued to utter these words as a way of coaxing me through, each time we have another crisis, and each time we stare down yet another frightening round of scans and changes in chemotherapy treatment.

What's interesting to me,  is that for some reason, this simple mantra of "I can do this", has stayed with me and has really sustained me even through the most difficult of times.  I continue to be truly amazed by what the human body and psyche is able to endure in the face of medical catastrophe.  And whilst many people are quick to label this kind of coping mechanism as brave, or having a fighting spirit or simply strength of character,  to me it's just getting through a horrendous experience the best way I know how.  There's nothing brave about it.  It just is what it is.  And wouldn't everybody do the same if they were in my shoes?  You just do it, and you get through it.  Somehow.

In dealing with my own cancer nightmare, I have become a voracious reader of all things breast cancer.  I've been particularly interested in the history of breast cancer, and recently read an absorbing book by James S.Olson, entitled Bathsheba's Breast: Women Cancer and History. After finishing this book, I was struck by two things.  Firstly, by how long the world has known about breast cancer, apparently since ancient Egyptian times, and yet how little we still know about breast cancer, even today.  And secondly, I was completely moved by the horrifying ordeals that women have endured, and continue to endure, in dealing with the disease itself and the treatments inflicted on them by the medical establishment of the particular time. Indeed, their stories are traumatic and unbearably gruesome to the reader, but in the end they remind us of the lengths women have always been prepared to go to in the hope for a cure from this terrible disease.

Anne of Austria (b.1601- d.1666)
Mastectomy in 1655
Consider Anne of Austria, the wife of Louis XIII, who died of breast cancer in 1666 in France, at the age of sixty-five years old.  She had first noticed a lump in her breast in 1663, but chose to ignore it, probably to avoid the ghastly and daunting breast cancer treatment options of that time which included surgical excisions, bleedings and purging of the supposed cancer-causing black bile which was part of the popular Humoral medical theory of the day.  In 1664, after the pain of the tumor became intolerable and she became sicker, Anne consulted her physicians.  The doctors realized that surgery was not possible as the tumor had spread to under her arm, and so they began a series of treatments designed to keep her alive.  Bleedings, daily enemas, purges, herbal poultices and even daily surgical removal of necrotic tissue became Anne's reality.  But it was all to no avail and after her punishing ordeal, Anne passed away in 1666.

18th century mastectomy instruments
of Gerard Tabor
By the 18th-century, Humoral medical theories of breast cancer were largely abandoned, with the mastectomy becoming the preferred method of treatment by physicians of the time.  In 1811, the Victorian novelist Fanny Burney, described in a letter, her experience of a mastectomy without anesthetic or proper sterilization procedures.  It's a harrowing account, and is recounted in full in the attached link, however this excerpt is wholly descriptive of the agony endured by Madam Burney.
Fanny Burney
 (b. 1752 - d. 1840)
My dearest Esther, - & all my dears to whom she communicates this doleful ditty, will rejoice to hear that this resolution once taken, was firmly adhered to, in defiance of a terror that surpasses all description, & the most torturing pain. Yet - when the dreadful steel was plunged into the breast - cutting through veins - arteries - flesh - nerves - I needed no injunctions not to restrain my cries. I began a scream that lasted unintermittingly during the whole time of the incision - & I almost marvel that it rings not in my Ears still! so excruciating was the agony. When the wound was made, & the instrument was withdrawn, the pain seemed undiminished, for the air that suddenly rushed into those delicate parts felt like a mass of minute but sharp & forked poniards, that were tearing the edges of the wound - but when again I felt the instrument - describing a curve - cutting against the grain, if I may so say, while the flesh resisted in a manner so forcible as to oppose & tire the hand of the operator, who was forced to change from the right to the left - then, indeed, I thought I must have expired.
Abigail "Nabby" Smith, the daughter of U.S. president John Adams and his wife Abigail, found a lump in her breast in 1809.   The family physician, William Rush, who after consulting with Nabby, wrote ominously to her family:
Nabby Smith (b.1765-d.1813)
"....This remedy is the knife.  From her account of the moving state of tumor, it is now in a proper situation for the operation.  Should she wait till it suppurates or even inflames much, it may be too late....I repeat again, let there be no delay in flying to the knife."
Ultimately a surgeon, by the name of John Warren of Boston, operated on Nabby in the upstairs bedroom of the Adams' house. His kit of surgical tools included a large fork with two six-inch prongs sharpened to a needle point, a wooden-handled razor, a pile of compress bandages, with a small oven of red-hot coals which heated a flat, thick heavy iron spatula.
18th Century Mastectomy Instruments
similar to those described in Nabby's operation
Nabby entered the bedroom dressed in her Sunday best, and was directed to sit down and lean back in a reclining chair, upon where her waist, legs, feet and right arm were belted, and her left arm was raised above her head.  Whilst another physician held her raised arm, and another stood behind restraining her shoulders and neck:
".....Warren then straddled Nabby's knees, leaned over her semireclined body and went to work....."  
A full account of the operation, again performed without anesthesia or sterile conditions,  Nabby's recovery,  and then her eventual demise from the disease in 1813 at the age of forty-eight, is available in essay form, from James S. Olson's book in the attached link.

Asa and Lucy Thurston
Similarly, Lucy Goodale Thurston (b.1795 - d. 1876), a missionary living in Hawaii, also wrote an incredible letter describing her mastectomy performed without anesthesia in 1855. Consider this excerpt:
"Then came a gash long and deep, first on the side of my breast, then on the other.  Deep sickness seized me, and deprived me of my breakfast.  This was followed by extreme faintness.  My sufferings were no longer local.  There was a general feeling of agony throughout the whole operation."  
 Reading these women's stories, reminds us of the resilience of women even in the most dire of circumstances and there's something in this that I connect with in trying to come to terms with my own breast cancer treatment.  No matter how bad things seem for me at times, it's almost unimaginable to think of the sheer terror and horror that each of the women featured in this post must have gone through.  And yet somehow they found the fortitude to stare down the beast and suffer and endure the most indescribable indignities in seeking a cure for their disease.  What I find even more interesting about Fanny and Lucy's cases, is that they wrote about their experiences in a time when breast cancer was considered shameful, something to be hidden and most certainly not discussed outside of the immediate family.

But in some ways, this is where my experience and the experiences of these women converge.  Indeed Gayle Sulik, in her blog post entitled "the terrible stories" and discussing the works of African-American poet, Lucille Clifton who also had breast cancer, articulates very well the importance of writing in dealing with this kind of trauma;
"The “terrible stories” of which Clifton speaks reveal the power of story-telling especially when confronting challenging life experiences. The narratives, necessary and terrifying, are a way of communicating, finding connection, and giving voice to private, deeply felt experiences."
Unable to speak freely about their experiences, perhaps Fanny and Lucy found solace in their letter-writing, and were able to find a way to connect with what had happened to them.  In all likelihood, writing was their only means of support in trying to heal from the great traumas their minds and bodies had gone through.  In many respects, this is no different to the reasons that we blog about our own cancer experiences today.

In reading and digesting these women's stories,  what shone through for me, was the spirit possessed by these women in facing their terrifying surgeries and treatments.  It's a spirit that I think many women possess.  It's not necessarily bravery, or courage or saint-like strength.  But more of a spirit of "can-do".  I think it's the same spirit that gets me through.  And perhaps this is what my oncologist is trying to tap into when she tells me that "I can do this and that I will get through it".  It's this can-do spirit, shared by so many women and reflected in so many stories, past and present, of famous women and ordinary women alike, that I find so inspiring and motivating.

In the cancer culture, we continue to embody the spirit of can-do women everyday, probably without even realizing it.  Sarah Horton of Being Sarah, a published author and dedicated breast cancer activist in the U.K; Gudrun Kemper of Breast Cancer Action Germany, an independent voice for German women affected by breast cancer in a cancer culture dominated by pharmaceutical corporations; Gayle Sulik, author of Pink Ribbon Blues, asking the tough questions of the U.S. breast cancer movement; Jody Shoger of Women With Cancer, a tireless cancer advocate who's harnessed the power of Twitter (@jodyms) to keep us informed of the cancer-world news; Chemobabe, Katie at Uneasy Pink, Kathi of The Accidental Amazon, Stacey of Brining Up Goliath, Nancy of Nancy's Point, Brenda of Breast Cancer Sisterhood, Marie of Journeying Beyond Breast Cancer, Sarah at The Carcinista; are but a few more of the wonderful community of can-do women bloggers doing their bit to keep the fires burning and the spotlight on the realities of lives interrupted and challenged by a cancer diagnosis. We continue to share, we continue to write and we continue to just keep doing what we do.  Why?  Because we can do it !

And so readers it is with this "can-do" spirit in mind, that today I am fulfilling a promise to myself (mentioned in my post, "Moving Forward") by launching a new blog called:


Can-Do Women
An Homage to the Everyday Lives of Women, Past and Present

I will continue to write The Cancer Culture Chronicles with the same energy and attitude as before, but the Can-Do Women blog will fulfill an avid interest that I have in women's social history, and a desire to expand my writing interests beyond the cancer realm. I hope that it will become an interactive magazine-style blog, in which we can all share something about the Can-Do Women that we encounter from the past, present and in our everyday lives.  Please do let me know what you think, and your suggestions for features will be most welcome.  Features may take any form; stories, photographs, poetry, articles, interviews, pictures, advertisements, recipes, videos, snippets of everyday life, the form is really unlimited.  You can email me at candowomen@gmail.com or connect via the Can-Do Women Facebook page.

Please join the conversation.  You are most welcome.  




Sunday, November 14, 2010

The Gift of Breast Cancer? I'd Like A Refund.

"I would never wish cancer on anyone. But I wouldn't give back the experience either."
"You are forced to either look upon the experience as a curse, or a lesson in life/challenge to learn from and grow from. Ie., a "blessing"!"

These are real quotes sourced from comments posted to an article written by Eve Ensler (author of The Vagina Monologues) entitled, The Gift Of Cancer.  That's right. The. Gift. Of. Cancer.  Gift. Cancer.  Really ?  These are not words that I would ever wish to see in the same sentence. Ever. And yet, I seem to be surrounded by this kind of sentiment.

Are there people out there who actually see cancer as a gift ?  An experience they would never give back ? A blessing ? Are people now drinking the chemo ?

This week I had plenty of opportunity to ponder my own particular gift and associated blessings. As I was injected with another vile vial of radioactive goop by Nurse I-Couldn't-Hit-A-Vein-If-My-Life-Depended-On-It, so that my entire body could be scanned for more Breastmas-Tree-like lights whilst lying perfectly still in a dirt-nap state in a machine that is strangely reminiscent of lying in a coffin.  (Now, not personally knowing any vampires outside of Sookie and the gang from True Blood, I can't attest to the accuracy of this statement, but I think the only difference might be that the occupant of said machine has a pulse).  Anyway, before I launch into a dull tirade on the indignities of the whole PET/CT scan thing, let me get back to the point of this post.

From a sociocultural perspective, much of what I see and hear in the media regarding the breast cancer "experience" seems to carry with it an aura of calm, peaceful reflection and contemplation.  One could be forgiven for thinking that breast cancer is simply a journey on a well-trodden path that begins with a test of marathon endurance and ends with tangible feelings of achievement, clarity and purpose for the newly minted heroic Survivor.  In an almost graceful state of being, the triumphant Survivor peels back the veneer of her previous  existence to transform into a new and better person filled with wisdom and experiences, feeling eternally grateful and a saintly duty to repay the favors of her life and bestow the gifts of her cancer journey on the world around her.     Epiphanic sentiment abounds.   Transcendent survivorship seems to be the modus operandi in today's breast cancer culture.

And maybe this is exactly  how it is for many who have been through the breast cancer "experience", and I'm not saying that this is wrong.  Everybody has their own reality.  But it is the popular public notion of how a person dealing with breast cancer is imagined to be that I have a problem with. Because when you get to the point where breast cancer is  with you 24/7, with no end-game in sight as far as treatment is concerned,  and the relentless advancing of your disease no matter what you do, the concept of transcendent survivorship is a bitter pill to try and swallow.  In fact, I find it downright alienating.

Gayle Sulik in her recently published tome, Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health, expounds on these popular notions of Survivorship and indeed proposes the"feeling rules of breast cancer survivorship" as an overarching social framework within the context of breast cancer culture.  Ms Sulik writes:
"Feeling Rule 1:  Survivorship requires a strong sense of optimism in terms of hope, faith, and transcendence.
Feeling Rule 2: Survivorship necessitates selfishness, which is constructed in masculine terms as a rational coping strategy or as a confession of gender violations related to women's nurturance and selflessness.
Feeling Rule 3: Guilt results from the stigma associated with failing to present oneself adequately as a she-roic survivor, losing bodily integrity, or disrupting gender roles."
.......The feeling rules of breast cancer survivorship empower and constrain throughout the breast cancer experience, and within women's particular circumstances..........the rules contribute to a "balancing act" as women try to carve out their own mode of survivorship and establish equilibrium between their needs and the needs of others."
Exactly right.  No wonder I feel the way I do.  Honestly,  having cancer has left me with nothing but a gnawing sense of what might have been and what definitely won't be.  It has forced me to confront a whole bunch of crap that, quite frankly, I could have done without.  My life was just fine before cancer rudely barged in and now that I'm just living with it and trying to accept that this is just the way it's going to be,  I certainly don't feel like I'm transcending and morphing into a higher being.  I'm just getting on with it the best way I know how.

The Gift of Breast Cancer.
It doesn't fit. Can I return it ?
For me at least,  terming any part of the cancer experience as a gift or a blessing just seems plain wrong.  Okay I probably do have a greater appreciation for life's simple pleasures and I'm certainly a more compassionate and thinking human being, but I don't see any of this as a gift or a blessing.  A gift is something that makes you feel a bit special and comes without any strings attached.  Cancer takes away so much more than can ever be imagined, and to try and portray this otherwise by putting a positive spin on any part of the experience is what, I believe, is being perpetuated by the pinking of the breast cancer realm.   Isn't what we go through invalidated by using the words like "gift" and "blessing" in the same sentence as cancer? Describing any part of the experience of cancer with terms such as these, boxes up the truth with a pretty pink ribbon to be neatly filed away under "Positive Life-Affirming Experiences" or something similar.  I don't care if the experience of breast cancer causes you to morph into the next Mother Theresa, the fact remains that nothing, nada, zilch can ever be enough to compensate for what is lost to breast cancer. It's an evil curse and I don't intend to ever see it any other way.

Is it shocking to you in reading this that I sound so angry and bitter ?  Yes ?  Why ?  Because this is the myth of populist "survivorship".  It is not everybody's reality.  Doesn't anger just make me human?     So what does all this mean ?  I don't know, but I'm sure as hell not going to give up being angry that this happened to me, and I'm sure as hell not going to give up writing about it.  In fact I would say that feeling angry is a good thing.  At least for me.  It feeds the fire.   My people will just have to deal with it.

After all, I am.

Tuesday, October 12, 2010

Is she crazy ?

In case you were starting to wonder if I had gone over the edge with my rantings on the evils of the pink-ribbon movement, see this recent piece written by Barron H. Lerner M.D., for the New York Times.  You see ? I'm not crazy.  Plenty of food for thought and inspiration for change.

New York Times Well Blog entry:  Pink Ribbon Fatigue, New York Times, October 11, 2010.

Tuesday, October 5, 2010

But What to Do ?

It occurred to me whilst out walking my best little furry friend in the world, that it's all very well for me to spend my time ranting and raving about the pink ribbon movement,  but in doing so I fear I may be in danger of delivering a mixed message.

So let me just clarify and put my money (and possibly yours) where my mouth is.

I support anything that can truly make a difference in ending breast cancer.  I want my money going into research that will result in never having to talk about breast cancer ever again.  I don't want my money going into research unless it is addressing the fundamental question as to why breast cancer continues to be a mortal threat.  If we understand why, then we can address the root causes and there won't be any need for a holy grail cure.   I want my money going directly to a source that might ultimately save my life.  I don't want  my money going to yet another  "early-detection-saves-lives" education and awareness campaign.  Thanks pink-ribbon marketers for all that you have done on this score but I am aware as I think are most other people by now.  Call me selfish, but these kinds of campaigns don't help me nor the millions of other people out there who already have this dreadful disease, nor do they get us any further in understanding why people continue to be diagnosed.

So where will my philanthropy be going this year ?

1.  Breast Cancer Action whose mission statement states:


"Breast Cancer Action carries the voices of people affected by breast cancer to inspire and compel the changes necessary to end the breast cancer epidemic."
    
TO DONATE TO BREAST CANCER ACTION CLICK HERE

2. National Breast Cancer Coalition whose statement states:

"NBCC's mission is to eradicate breast cancer, the most common form of cancer among women in the United States, by focusing the administration, U.S. Congress, research institutions and consumer advocates on breast cancer. NBCC encourages all those concerned about this disease to become advocates for action and change. The Coalition informs, trains and directs patients and others in effective advocacy efforts. Nationwide, women and men are increasing the awareness of breast cancer public policy by participating in legislative, scientific and regulatory decisions, promoting positive media coverage and actively working to raise public awareness."


TO DONATE TO NATIONAL BREAST CANCER COALITION CLICK HERE


Obviously feel free to donate to any other organization of your choosing, but please, before you donate, read what Breast Cancer Action and Gayle Sulik have to say in evaluating where your hard-earned money should go.  Check out Gayle's blog entry, "Before You Buy Pink".