pairofgenes

Look, My Genes are Famous!

In Uncategorized on May 29, 2013 at 3:12 pm

“In a battle all you need to make you fight is a little hot blood and the knowledge that it’s more dangerous to lose than to win.” -GB Shaw

So I have been quiet for a couple of months.  I had hit a point where things were in a holding pattern and although my feelings about each stage continued to morph and change, without concrete medical info. to deliver, I didn’t feel I had anything of intrinsic value to add to the conversation.  But then Angelina Jolie got a preemptive double mastectomy.

I have waited awhile to respond to this news because I wanted to see how the world reacted and make that part of this piece.  And much like my own story, and the story of thousands who have made this choice, the opinions ran the gamut.  People immediately wrote op-ed pieces about women making poor choices to mutilate themselves solely based on fear.  They criticized the medical establishment for operating based on genetic probability.  Better that we should drop dead in our forties then take matters into our own hands, right?  And because it was Jolie, a woman that people love to hate, there was criticism that she was using this as a publicity ploy to make herself more likable to the public.

Now, I’m a fan of hers.  I don’t mean that I rush out to see her movies, but I respect the fact that she has used her fame to aid in humanitarian efforts, she is bold, and outspoken and doesn’t seem to suffer fools gladly- all good stuff in my book.  But let’s say for a minute that I didn’t like her.  That I blamed her for Brad and Jennifer’s break-up, that I thought she made shitty movies, whatever the complaint is- pick one.  Even then, I would never criticize her choice to protect her health so she can stick around and raise her not insubstantial brood of children.

And to the people who think they know better, who direct scorn towards her for what they perceive as setting a trend of self-mutilation, who suggest that women are too afraid of cancer and are therefore acting irresponsibly, well to them I say, Fuck You.

The only ‘trend’ she stands to set is that of genetic testing and proactive decisions in regards to women’s health.  Well, we wouldn’t want that, would we.  I mean women might actually make informed decisions about their own bodies- horror of all horrors!

The night this news hit I received posts, messages, texts, phone calls, you name it, checking in to see if I had heard that someone famous was talking about the BRCA gene.  I have spent the last year explaining what it meant to people and oftentimes beginning in an apologetic tone knowing that judgement would follow my description of what I had undergone to save my own life.  And then I wrote about it, and sought out other people who had dealt with this, and finally, just recently, have started down a path where it is no longer at the center of my life.  But for anyone to ever suggest that a double mastectomy and full hysterectomy is something anyone would do for the sake of medical trends is not only ignorant, but inarguably proves that women’s health remains an issue wherein far too many people insert their big fat noses.  Stand in front of me, with either BRCA1 or BRCA2 or in my case, all of the above, and tell me how ‘lightly’ you take the 97% chance of getting cancer.  Of course if the Jolie dissenters took the time to stand in her shoes they wouldn’t respond in a tone that reeks of holier than thou.

She could have hidden her decision and none of us would have ever been the wiser.  She had managed to do so for many months prior to the announcement.  She chose to discuss it because it is a threat to women’s health and as I said in my very first post almost two years ago, knowledge is power.  Knowing what you are up against is the only way to fight it.  An invisible enemy will defeat your ass every time.  She didn’t come forward so people would tell her she was brave and she did right by her children but for the record, she is and she did.

In two weeks I am taking my son to Alaska to celebrate the anniversary of what I underwent so I can live to see his first crush, his awkward adolescence, his graduations, the amazing man he will surely become.  Even with all of the complications and the continuing saga of reconstruction, I have never doubted or second guessed the decision I made to significantly lower my chances of dying of cancer.  Call it what you want, that’s my truth and hence my choice.  And I am grateful to Angelina Jolie because while I didn’t need her to validate that choice, she will undoubtedly help me defend it.

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  1. Amy, that was a beautifully powerfully written entry. You should never deprive us of your insight. Your strength, bravery, gusto and humor in the face of tough decisions give me/us inspiration every day.

  2. Amen sister! Carpe fucking Diem! Whatever it takes! Love this post. XO

  3. Women’s health has traditionally taken 2 nd place over holier than thou dissenters of a woman’s right to make her own choices about her body. This is how it is in cases of mortal, spiritual and psychological preservation. Fuck the police! I second the previous comments- thanks for writing Amy- you remain: Das Bees Knees. Now if you’ll excuse me, I have something very important to do…. Xo

  4. I had mixed feelings when I first read Ms. Jolie’s story. The paucity of medical complications in her case, combined with the benefits of her privilege, made her account feel almost breezy by comparison with yours. A part of me wanted to tell Ms. Jolie that she got off light. A wiser part reminded me that when it comes to the choices imposed by BRCA there is no “light.” I’m sure Ms. Jolie’s actual experience was anything but “breezy.” And as far as style is concerned, a public interest story for a general readership cannot fairly be compared to the kind of blow-by-blow, soul-baring, ruminative account that you provided us in your blog. Your story may never get a fraction of the exposure of Jolie’s, but it needed to be told. And both stories need to be heard. Widely. One can only hope they will engender yet more stories on the subject.

  5. wow-what a powerful piece…I am so proud of you…

  6. Who’s Angelica Jolie-?

  7. Amen, AMY is power. BRAV-freakin-O, Sistah!

  8. Amy, a genius post. Brava to you. You continue to inspire me as a mother and as a woman. Have a wonderful trip!!!

  9. While you might have inherited a couple of the worst kind of genes and knew what to do when you had to, you obviously inherited the very best of other genes…..the ones that count: courage, individuality, clarity, power, ALWAYS your humor in the face of every challenge and additionally, the gift of articulation. You are one awesome woman, Amy. I thank your mother for many things, not the least the opportunity to know your sister and you.
    HAPPY anniversary!!

  10. See, and I thought this would start off with something like, “that bitch is always stealing my thunder…” I joke. As usual, you are beyond brave and so enduring. I love you and can’t wait to see your pictures of Alaska. La Bella Vita, amore.

  11. Well said, Amy. And thank you for the courage with which you share your stories – the world needs them! You are an inspiration.

  12. You’re fucking awesome. Period.

    In fact I heard that Angelina did it because she was reading your blog.

    Gave I mentioned that I love you? Always have. Always will.

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