Trailblazers
Lisa Bonchek Adams
I have met brave women who are exploring the outer edge of human possibility with no history to guide them, and with a courage to make themselves vulnerable that I find moving beyond words – Gloria Steinem.
I read these words and couldn’t help but think, not just of Lisa Adams but of all the women who have the courage to show the real face of cancer – not the pink beribboned confection that we are so often exposed to.
I think back to a time, just a short two decades ago, when cancer was called by euphemistic terms like the Big C; when it was not acceptable to talk about it in polite society and when there was no public education about its causes, biology, prevention or progression. Breast cancer was a dreaded disease which involved mutilation, fear, shame and death.
The stigma which kept women quiet about their experience has been, for the most part, eliminated in the western world, but only if you conform to the model of the thriving survivor. If you move into the territory of metastatic breast cancer, then you wouldn’t be wrong in thinking you were catapulted back into an earlier time of less enlightenment (as last week’s events have proved).
But women, like Lisa Adams and Katherine O’Brien, and a growing number of others with MBC are changing all that. They are in the words of one commentator explorers ” sending dispatches from one part of a frontier where we will all surely follow.”
The issue is not Lisa’s use of social media to tell her story, but that her use of it is outside the historical literary context of doing so. When Christopher Hitchens wrote about his terminal esophageal cancer in Vanity Fair, his columns were widely-read and praised; but Lisa’s writing is no less moving and literary. It just happens to be in a different form, not filtered through time or editorial constraints. It is happening right here, right now. Perhaps it is this immediacy that makes some uncomfortable? Would it be more acceptable at a remove of time? Whatever your answer to these questions, there is no doubt in my mind that Lisa Adams is blazing a trail and we are following in her footsteps – some more gingerly than others, but nevertheless moving in the right direction.
Thanks for your kind words. I often think of my mom, a quiet woman who died of inflammatory breast cancer in 1983. I am sure she never met anyone with IBC. Her only means of learning about her disease was via our small town library. So I feel an obligation to say something. In my professional life, I edit a magazine for commercial printers. I am glad I can use my communication skills for a broader purpose.
One thing I would like to see is more diversity in social media. Although breast cancer is diagnosed in far more white women, far more black women are likety to die of it of the disease. (See http://www.nytimes.com/2013/12/20/health/tackling-a-racial-gap-in-breast-cancer-survival.html. )
I was so sorry to learn Barbra Watson-Riley died this past November. (http://pinkwellchick.com/blog/) We need to more voices like hers.
Thanks again,
KOB
Katherine O’Brien
http://www.mbcn.com
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Katherine, your point about your Mom makes me so sad, and yet this was the reality back then – can hardly believe I am saying back then – the eighties doesn’t seem so long ago to me now! Your work in changing the conversations is so valuable and it is thanks to trailblazer like you that we are seeing some infinitesimal changes occurring, but as you so rightly point out we have a long way to go when it comes to increasing diversity and social awareness.
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This is a wonderful post, Marie and such a reminder of how far the discourse has come. For me, the fascination lies additionally in developing contexts where the situation you describe still exists. The name of the disease is often not spoken aloud, there is shame as well as fear and stigma associated with diagnosis. Traditional beliefs are often the basis for interpreting information about cancer. And there is limited access to affordable care and treatment within the means of those diagnosed or worried.
The words which Lisa and others so powerfully gift to us, providing such a true picture of metastatic breast cancer do indeed blaze a trail, which I believe which be of enormous and growing importance while tentatively stepping off the trails here in those other developing contexts.
Thank you. And here’s to a great deal more trailblazing!
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I was thinking of a point you so often make Philippa about an awareness of another kind -that you witness first hand the taboos around breast cancer that are still prevalent where you are.
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Great reflections Marie. Our culture does not like uncomfortable truths. We turn our heads more than we face them head on. This won’t change unless brave people do it differently and reduce the isolation any of us feel if people feel uncomfortable with our situation. I suspect it’s that that’s at the core of so much of our writing. Thanks for keeping this discussion going. Xx
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Hi Marie,
Love the quote. Allowing others to see your vulnerabilities isn’t easy, but yet it’s often so important to do just that when shedding light on whatever it might be that you’re sharing about or speaking up about. Being a witness can be tough as well, though not to the same extent of course, and everyone has a responsibility here to “witness well”.
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Thank you, Marie, for a wonderful post. We are constantly faced with the ‘thriving survivor’ image, especially in October when we try to get stories of living with metastatic breast cancer in the news and the public eye. It is rare to have the media project a balanced story–the positive, sanitized version persists, which is why it’s so important to have witnesses like Lisa and Katherine step forward.
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Lisa is definitely blazing a trail for all of us. When I saw the photo on her blog of her fluid drained from the pleural effusion, I was absolutely amazed. I had no energy at all following my similar drainage (which had to be done twice), let alone energy to take a photo and then post a blog all about it. She resurrected all those memories of my hospital stay over a year ago; I shared the same feelings and it was good to experience them anew. I then pined for my deceased mother, but it was a good pining, a grief that needed to be expressed. Thank you so much, Marie and Lisa, for bringing her blog to the foreground. Lisa is indeed a pioneer, of the best sort. XOX
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Very well said, Marie. We have some very brave trailblazers amongst us. I use the word brave quite purposefully. It may not be a choice to get the cancer – but to share so much, that is an act of choice that will create change. ~Catherine
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Thanks to all of you for taking the time to comment here and for sharing your own thoughts. So many of you are lifting the veil of cancer’s secrets and I salute you all.
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