Tuesday, October 4, 2011

It’s my story. Not yours. Mine. All mine. & Chemo Day 6

(Reposted from http://breastcancer.lohudblogs.com/2011/10/04/its-my-story-not-yours-mine-all-mine/)

I've always been a very open person. I don't know if it's because I'm a latent exhibitionist, a single child that demands to be the center of attention, or simply because if it's happening, and it's a part of who I am, there's no point in hiding it. That's why I had no qualms working with the Journal News on this project, writing this blog, being open about my cancer diagnosis and journey, etc. Sure, there are things that I won't reveal publicly - ever. I won't admit to my actual jean size. I won't admit to my exact weight. It will be a cold day in hell when I publicly admit to my real age in newsprint. And I'll never reveal my true secret crush from grade school. (Ok. That was hardly a well-kept secret. Anyone who went to Bi-Cultural with me from 3rd grade until graduation knows the answer, including him.)

In today's video blog, I address a strange situation that arose yesterday. Linda Lombroso, the reporter who wrote the story, "Meet Rica Mendes," emailed me to tell me that a person called her, specifically stating that she wouldn't reveal her name, but that I should explain that "the reason I had the double mastectomy was because I was BRCA positive." Linda and I both remarked at how strange this was for a number of reasons.

First, I don't remember making my BRCA status a secret (though, it should be noted, it is, in fact, a very personal, private medical fact that, I'd imagine, most would not share as openly as I have). I honestly couldn't remember at the time if Linda chose to publish that fact in the story. I know we'd discussed it in the interviews and subsequent conversations. Secondly, how did this person know about my BRCA status? And the fact that my genetic test results was a factor in my surgical choice? Lastly, given the fact that there are only a few ways as to how this person could have known this information - by either being a personal friend or contact, by having followed my story/personal blog for sometime, etc - why would this person feel the need to go to the reporter who wrote the article instead of just dropping a line to me personally and pointing out that perhaps that wasn't clear? Why hide behind the anonymity of a nameless phone call to a third party asking that I state, for the record, that's why I had my double mastectomy?

Now, before anonymous gets defensive, please don't take this as an attack. First off, you're still anonymous - I have no idea who you are (though curiosity is killing this cat, and I've been running my Facebook friends, Twitter followers and blog readers through my head since the email trying to figure out who you are, control freak that I am). Secondly, I'm going to use this as part of a bigger point, so bear with me.

This raises a few issues, within the scope of dealing with cancer and beyond.

I have a lot of gay friends. My cousin is an openly gay activist. I went to Oberlin College. I don't say this to make myself seem cool. I say this because I've witnessed, or been a part of, the coming out process for many, many people over the years. From people who came out at birth to those who eeked out of the closet, and those whom I suspect are still in denial of their own identity after all these years, it's a difficult process to go through, with a tremendous amount of consideration taken, etc. It's not done on a whim. I've likened going public with cancer with coming out of the closet. (I don't mean to belittle coming out, but that I have a new understanding of the kind of debate one has with oneself about how to reveal what, when, etc.)

If there is one thing that I've learned from my brave gay friends about revealing something private publicly, it's that you let the person do it at their own pace. Even if you know the absolute truth, straight from the horse's mouth, you do not put it out there for them, or go to a third party requesting/demanding that the individual reveal more than they already have. There are several reasons for this.
  1. Sexuality, and medical status, are, by law, considered private information. There is no obligation to share this information. Therefore, if the individual chooses to share it, it's a big deal, and not something that you're entitled to know unless they choose to share it with you.
  2. You may very likely scare that person back "into the closet." If this person has chosen this time to go public with something that they aren't obliged to share, let them do it at their own pace. You don't know the reasons why they are choosing the method or timing with which they are employing.
  3. You betray their trust. Even if it was part of a semi-public conversation, it's not your information to share. It's theirs. And if you choose to be the authority on them, and take something that they chose to share with you and pass it onto someone else, they will not be able to trust you.
  4. In a longer-term project, like this one, you don't know if there is a bigger communication plan.
  5. It's simply not polite.
One of the issues that LIVESTRONG works very hard to explore is the notion that a cancer diagnosis creates a stigma. In different cultures and parts of the world, you may as well have leprosy. In the film screening I recently attending for "Delivering Hope," a man in Africa explained that being diagnosed with cancer in his village was worse than being diagnosed with AIDS. It was seen as fatal and causing you to be treated as being an untouchable. While, I, personally, do not see this experience as being brave, for others, I know that it is a huge step to go public with their cancer diagnosis. My "chemo buddy" will not be named, for example, only mentioned in passing, because, for her, it's not for public consumption. I don't judge her for that decision, I won't push her to be as public as I am, and I'll never tell her what to do with the information she's chosen to share with me, because, for her, this isn't up for public scrutiny. This is a private matter. When, and if, she's ready to talk more openly about it, I will support her. And if she never does, I'll support her, too.

As it happens, there are a number of reasons why my BRCA status wasn't revealed. First, well, you'll have to ask Linda as to why she didn't include it in the initial story. My only assumption is because she knew I'd be addressing it at some point. Second, it was because this blog, this project, is not to commemorate Rica Awareness Month. It's meant to be an exploration for Breast Cancer Awareness Month. As much as I love the spotlight, even I know this isn't the Rica Horse & Pony Show. I know that my story is just that - my story. It's just one breast cancer fighter's story. It just happens it's the story of a woman who is willing to expose pretty much everything about that journey. But there are other more relevant tales to tell right now that I wanted to focus my posts on, for the moment. I didn't want the first batch of blogs to be all about me. (Well, ok, the only child in me would love nothing else, but the responsible adult knew that the editors that invited me to participate in this would likely frown upon that.)

So, not to worry - I'll tell my story. If you're really antsy and can't wait, you're invited, as always, to read up on my personal blog, which I've been keeping this whole time, at ricalivestrong.blogspot.com. If you want a preview on the BRCA status situation, read the original blog post where I discuss the genetic factors that played a part in my decision, "Welcome to Our Ool," that I'll be using later this month for the specifics.

But, as I've stated in so many of my posts already, my cancer journey, my treatment choices, my surgeries, my doctors and providers are just that - mine. While I may share tips, offer practical advice, share resources, suggest people and organizations to speak to, I will never state that my, personal choices are universal, the be all end all for everyone with breast cancer, etc. Our cancer diagnosis is like our fingerprints - while we all share the basics, they are still incredibly unique to every one of us, and every single one must be considered individually. Even when the test scores and results are identical, the path towards survivorship that we all choose cannot be empirically defined. What I find is "right" for me is just that - right for me. It may not be right for you. And that's ok. Consider this blog post as my universal disclaimer, if that makes you feel better. This breast cancer story is strictly my own. The views and opinions expressed on this web site are soley those of the original authors and other contributors. Thou shalt not assert any other breast cancer stories before me. No animals were harmed in the making of this film.

I don't want to be the Breast Cancer Poster Child for the Hudson Valley. I just want to be Rica's Breast Cancer Journey Poster Child. Again, maybe it's the diva in me, but I don't want my story to be your story. It's my own.

You have to find your own story in your own breast cancer experience.

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I'm all about free speech, etc, but I have to ask that comments are respectful of other readers, the fact that I, and many of us who follow this blog, support LIVESTRONG, and that you reserve Lance or LIVESTRONG bashing for another forum. As of right now, I'm still allowing Anonymous postings, however, that may not be the case in the future. Thanks!