Rachel . . .

6 Feb

Recently, my friend Kathi of The Accidental Amazon, commented on my blog. Since Kathi so often writes about the very things I am feeling, I thought I would share what she had to say (it is posted as a comment, but I wanted to re-iterate it here).

 “. . . I hope this year will be kinder to us all. I hope for less pinkwashing and less sexualizing and less trivializing of breast cancer. I hope for more answers and better options and less collateral damage. I know that none of us will forget Rachel . . .” (by Kathi, author of The Accidental Amazon)

Wow. So well put.

DSCN3532

Like I said, so often Kathi writes something that so exactly conveys how I feel . . . her blog is here at: Accidental Amazon

I hope that this year is kinder to all of us too.

Too many have gone and too many are suffering in ways that many outside of “cancerland” are unable to comprehend. I watched my aunt suffer in ways that are unimaginable and yet it happened. And the sad truth is that almost 20 years later (she died in 1994) nothing has really changed all that much. But I hope and pray that things will change. I pray for that for all of us. And I pray for that for Rachel’s memory – that her words will continue to make a difference and to continue to shed light on what needs to change and continue to encourage others to speak out.

I hope for less pink washing and less sexualizing and trivializing of breast cancer too.

The true face of this disease is so different from what is portrayed. That is one of the things that I find most disgusting about Susan G. Komen – that they parade women around who are survivors and paint them out to be completely over cancer – as if it was some little blip in their life – and they (SGK) then take credit for the paraded success stories – all a result of “early detection” . . . that is what they tout as a cure . . . GRRRRRRRRR. This is what I have seen year after year at their “races for the cure” (yes, I go to these things – I feel like I can’t fight the enemy unless I know them – rest assured, they get none of my money). They never bring out the women who can’t walk out on the stage or who are dying. After all, that just doesn’t make people feel all warm and fuzzy inside.

Not so Pretty in Pink

Instead they wrap it all up in pink bows and pink balloons and take credit for the survival of these seemingly unaffected survivors (it is horrifying to see really – the lies – when we all know that you don’t just walk away from it, there is
fallout, post traumatic distress, financial chaos, brain fog, physical pain, physical limitations and fatigue . . . to name just a few of the things that cancer leaves in its wake).

But there is no mention of any of this at the “races for the cure”. Instead it is pink ribbons, balloons, pink porta-potties (as Rachel so eloquently and mathematically pointed out, most of the money raked in by Komen in the name of a cure, went to everything but research). I mean really, pink porta-potties? Talk about money down the toilet. And PINK-WASHING – yup, they actually do it right there on site at the “race for the cure” – products given away and sold that are in containers that are linked to an increase risk in cancer (products that are in plastic with chemicals that leach into whatever you are drinking out of it – they call these chemicals hormone disrupters and there are many studies that link these “hormone disrupters” to not only an increase in breast cancer, but also prostate cancer.

That is how it is here in Orange County, California, where I live. Early detection is sold as a cure for breast cancer and survivors are paraded around a stage (one after the next speaks about their cancer blip as if it was nothing and then SGK gets more money in the door by associating themselves with survival and pretty pink stories.

That, to me, also trivializes breast cancer, trivializes what Rachel went through, what her family went through and continues to go through. And it trivializes the real plight of survivors and truly down plays the need for treatment post treatment. I need physical therapy but can not afford it. I have insurance, but the co-pays are impossible to manage.

I recently went back to work in a very full time (okay, more than full time) way. And it is very hard. My body is not keeping up with it. But, I am grateful to have the opportunity to be here and to claw my way through it. But, it is painful and hard and most people in my life think that I am fine (LOL).

It isn’t enough

The pink bows and ribbons and wasted dollar – trivialize all of it. We are all just supposed be grateful that we survived and not expect anything better . . . it is not good enough, not at all. And we are supposed to sit back and watch younger and younger women get diagnosed.

I stopped writing after Rachel died. It was just too painful and I felt too lost. It wasn’t a conscious decision to stop, I just stopped. I still have not watched all of her memorial footage (I barely got through any of it). Is that wrong? I just haven’t been able to do it. You see, I had planned a trip – it was this idea I had of traveling across country to meet all of these amazing women in this wonderful blogosphere – and at the end of that trip I intended to reach Rachel. That will never happen. She is gone. I had a map in my head – I saw pins placed where everyone resided – from the West Coast where I live, to the East Coast. Rachel was at the farthest point on my map of the United States. (Which at the time seemed fitting somehow, to end the trip in with a visit with Rachel). But, it never happened and it will not ever happen.

I know that none of us will ever forget Rachel. She left a void, a palpable empty hole. But, she also left us everything she wrote – such powerful words. Words that continue to churn around the world and draw attention to what is wrong, to what needs to change. Words that encourage others to write and to continue to pave the way for change.

Today much, I imagine, will be written about Rachel. I know that we will all be thinking of her and of her family. Like I said, for the most part, I stopped writing because of Rachel’s passing. I know that isn’t/wasn’t the right response and it certainly isn’t the right thing to do . . . especially when I recall that one of the last things Rachel said to me was to keep writing about SGK. I have felt guilty about not writing and I have felt paralyzed, when it came to writing, by her death. It is too hard to even explain.

I miss Rachel. I know I am just among many others who miss her, especially today.

Love and peace and prayers to Rachel’s family.

Here are two beautiful posts about Rachel:

Nancy’s Point: Remembering Rachel

Accidental Amazon: Elegy to Rachel

And here is one of her many important posts: Komen By The Numbers: 2010 And Still No Answers

Lisa

9 Responses to “Rachel . . .”

  1. Cancer Curmudgeon February 6, 2013 at 9:57 AM #

    “We are all just supposed be grateful that we survived and not expect anything better . . . it is not good enough, not at all. And we are supposed to sit back and watch younger and younger women get diagnosed.” YES, exactly. I hate the expectation from non-cancer patients, and from some breast cancer survivors that I should be grateful and sit back. I’ve said it before, I say it again: I can be grateful for my NED status and the medicine and professionals who brought that about, but I can demand more and better AT THE SAME TIME!

  2. Nancy's Point February 6, 2013 at 10:37 AM #

    I am hoping for those things you and Kathi speak of too. It’s scary how the gratitude thing can get so twisted around, if that makes sense. I know you miss Rachel too. There are so many others being missed as well. We must keep bearing witness to Rachel. We must keep bearing witness to all the lives affected and lost. We must try to keep on being #fearlessfriends. Thanks for writing. I’ve missed you. And thanks for the link!

    • cancerfree2b February 6, 2013 at 6:25 PM #

      Awe Nancy,
      I’ve missed you too. I marvel at your ability to write and keep at it and be such an amazing force in this blogosphere. You are awesome!

      I hope to see you some time. The world is not so big that we can’t make that happen. 🙂

      Thank you again for your comment, it means so much.

      Much love to you and my prayers to you at this time for your deep loss.
      xoxoxox
      Lisa

  3. TheDirtyPinkUnderbelly February 6, 2013 at 5:57 PM #

    Sweetie, you should post the bulk of this again in *October*. I’m glad for you that you’re writing again. Well put. -shelli

    • cancerfree2b February 6, 2013 at 6:22 PM #

      Awe, thank you so much, you are so sweet.
      It has been a rough year for so many. I have had two friends diagnosed in the past six months, both on the heals of two other women losing their lives to cancer and six months prior to that . . . Rachel and Susan – who were both just simply amazing.

      Thank you for your comment.

      Love and peace to you,
      Lisa

  4. chemobrainfog February 7, 2013 at 10:37 AM #

    Lisa,

    I have missed your voice and I have missed you, too. Yesterday was a bad day. I remember the comments on my own blog by Rachel and by Susan, too. I remember they both left a comment on the same post. It broke my heart to see that last year and it breaks my heart every time some else is stolen. As for the skewing of the numbers, don’t get me started. My blood boils. Every time…..

    Love to you,

    xoxox
    AnneMarie

    • cancerfree2b February 7, 2013 at 12:36 PM #

      Oh AnneMarie,
      I’ve missed you too. Yesterday was horrible. Two incredible women . . . gone. It is so sad, last year was so sad. I think I spent the past month preparing for yesterday. It didn’t make it any easier, but it did put a few things in perspective to me – okay, well really ONE thing – and that is that I have to get off my butt and write and write and write. Thank you for your message. I am sorry I have been MIA. It has been a struggle this past year. Six months after Rachel and Susan passed away, I lost two friends to cancer. It is just mind numbing. I am still in shock over that. I was actually in my oncologist’s office when I got the news (six months ago). Thank God I was there, I saw a social worker immediately and was able to pull it together enough to drive home. When I got home I got the news that my other friend had passed that same day – less than 12 hours apart. Surreal . . . again, just like Susan and Rachel. I can’t take any more of it. And yet, I know that I must. So . . . enough of my inaction. I will be back here, regularly, working.
      Much love to you too.
      Let’s meet this year, really, lets do it.
      xoxoxoxox
      Lisa

  5. The Accidental Amazon February 16, 2013 at 4:34 PM #

    Oh, Lisa, it breaks my heart to read about the trip you planned, which would have culminated in a visit with Rachel. Something I can sadly relate to. It was especially bitter to run of time, to be too late to visit her, as planned, just a few weeks after she died.

    I hope we both replan some trips, and include one another, and as many of our sisters as we can, in them. xoxo, Kathi

    • cancerfree2b March 7, 2013 at 12:27 AM #

      Hi Kathi,
      Just now seeing your comment. I agree wholeheartedly! I am so sorry for the trip that you all didn’t get to make. Such a loss. My trip was in my head, but I truly believed it was going to happen . . . I should have made it happen and it is a deep regret. I still want to make a trip like the one I described. Let’s make some trips happen this year 🙂

      xoxo
      Lisa

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