Wednesday, July 25, 2012

WHY BOTHER? THIS IS WHY .....

Why bother?  Frankly, I am exhausted.

Last Monday, July 16, I wrote a blog questioning a bikini parade and someone promoting Vitamin D from exposure to the sun as the cure all.  Caused a dustup.  One anonymous person left a nasty comment and a couple of other people left opposing commentary.  There are 60 comments under that post.  Granted.... I try to respond when anyone comments so only half of those came from others.  There was a new comment yesterday.  The D3 debate continues.  The bikini supporters?  No so much.

Then, it continued as the week progressed.  One year ago, could I have possibly imagined I would be here?  Feeling like a lightning rod.  I can guarantee I never expected to be doing THIS.  Yet.... here I am.... one year after publishing my first post.

I made a conscious decision to speak my truth and to stand up for my beliefs.  If I'm going to blog, I'm going to be truthful and honest.  Otherwise, why bother?  I'm not going to shy away from views that may be unpopular.  After dealing with tons of pushback, from what seems to have been every conceivable angle, I remain committed to accepting the fact that we are all different and as long as we are moving toward a common goal, there is no right or wrong way to do cancer.  There is only the way that works for the person dealing with the disease.

There IS, on the other hand, a right way to do research and a right way to help those who need support.  I'm not going to do the broken record on this matter, yet again.  I think, I HOPE after the ongoing discussion about Pink Ribbons Inc my feelings are clear and that we all realize there is only ONE page and we all belong on that page.

To conclude this saga, let me just say that my very respectful remark responding to the offensive comment left here was removed from the movie website.  TWICE.  He got to spew here, call me all sorts of names and when I went to his "space" to respond to some of what he spewed, he took my remarks down.  I had a feeling that might happen which is why I posted the reply on this blog, too.  My rational words in response to a lunatic made him look like more of a well..... umm... a lunatic.  I'm done with him but, having said all of that, it was worth every single ounce of frustration, irritation, aggravation and every other --ation.

You see...... a note was left on one of those movie websites and THIS is why I step into these situATIONS.

The film is near and dear to my heart. I was honored to be one of the Stage IV women interviewed in it. I'm not exactly sure what a "sobering image" means to people but I'm guessing this comment is reflective of only having seen what advanced cancer looks like in the movies and on sensationalized television programming. Perhaps the reviewer would be interested to know that one of the women interviewed died less than a year after the filming. (Mari- she is the one in the trailer who says, "We're living, we're human beings. We're not just a little pink ribbon.") You don't die from breast cancer unless it is Stage IV, and yet we are so rarely acknowledged because let's face it= we kind of suck as marketing tools for the optimistic "you can beat it" propaganda that has been so well fed to us as a culture. 

I want to add that the purpose of the film was to "change the conversation". The fact that there is discussion now about this issue where there was not much before, tells me that the film is doing its job and that we are indeed moving in the right direction. Thank you AnneMarie for "getting it" and speaking out on our behalf.


Thank YOU, Sandy Kugelman for lending your voice to such an important body of work.  I'm so very sorry to hear that Mari died.  I'm sure everyone who reads this blog joins me in extending our most heartfelt sympathies to your entire group and to Mari's loved ones.

I don't even know how to begin to express my gratitude to you, Sandy for acknowledging me.  Your words have meant more to me than I can possibly ever convey.

To answer my own question.... Why Bother?  Sandy's words are the answer.  THAT'S Why.

4 comments:

  1. AnneMarie,

    Great post! I apologize if I re-ignited the D3 subject with my comment yesterday. I certainly hope I didn't offend anyone.

    I'm sorry that you've had to deal with an ill-informed person who is being mean. It always baffles me when I see someone who is both--as if being one isn't bad enough. If a person is one, they can't afford to be the other as well. Unfortunately, we can't apply logical parameters to someone acting in an illogical manner. It's like trying to fit a square peg in a round hole. His ridiculous ad hominem and ad feminam attacks show that he doesn't really understand the subject matter at all and can only try to bully and insult.

    As for why you do this, we understand and support you. As long as people think breast cancer is a cutesy pink ribbon, society won't hold people accountable for the bottomless pit we seem to be throwing money into. So many people still think it's "the good kind of cancer" because it's been stripped of its ugly, true meaning and replaced by an adorable pink ribbon. How scary and real does that seem? Not even a little.

    I'm very sorry to hear of Mari's passing. My thoughts are with her loved ones. The pink ribbon and "awareness" are still not helping women like her--the metastatic women (and men). It's not even helping women like you and me, who have completed treatment but are never cured.

    You do this because you care. You do this because it's the right thing to do.

    Best wishes,
    Betty

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    1. Betty,

      Apology for the D3 comment completely and totally UNNECESSARY! That happens to be a worthwhile conversation which is the only reason I mentioned it. I appreciate having an open and meaningful conversation on this blog and your experience with D3 and your doctor's input are invaluable.

      If you offended anyone, then clearly, they are small-minded and small-minded isn't going to get us anywhere......

      Thank you again for such kind words..... Yes, I really do care and I may not be able to change things but I want to leave a strong foundation upon with others may build......

      xoxo
      AnneMarie

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  2. I have just put a post on my blog about Vitamin D which is a complete coincidence as inspired by the sun actually being out here in the UK at the moment after endless rain (my designs for an Ark are coming along nicely, but my teddies are arguing over which two I should take...). I haven't had much time to read too much on this blog yet but I completely believe in information being made available, and that the patient should be allowed to make their own informed opinion. I happen to take Vitamin D, but that is my choice after doing some research.

    I believe that we all need to be proactive patients who are prepared to take part in the decision making and treatments that we receive. Knowledge is power, but I appreciate that there are those who may not feel ready to take a proactive approach at the moment. We all have to follow the journey that is the right one for each of us. My journey is an integrated approach which suits me, and others have decided on the conventional journey.

    The accumulation of knowledge is vital to any journey, which is why I am so pleased that you support the Army of Women. Something as simple as taking 15 minutes of fill out a questionnaire on-line could help provide a vital clue. I joined, although I don't think there will be many things I can help with as I don't live in America, but I might be able to help out one day.

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    1. I'm VERY glad you joined Army of Women and I am an active volunteer. I hope that studies will open up globally, too!

      And yes, Vicki, I'm very big on being my own advocate...... from the very first moment I stepped into this commotion. I wholeheartedly agree with your thoughts about treatment (or choosing not to treat as my friend said in another comment) is highly personal and frankly, not up to anyone to question.

      Be well...... and thanks for coming over....

      AnneMarie
      xo

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