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Sunday, November 20, 2011

Memes, again.

I was just copied on another "awareness" meme on Facebook.  This time, the person who sent it to me is a long time, much loved, highly respected friend of mine.  One of those awesome friends I met online over a decade ago and whom I have grown to love deeply.  She is, in many ways, a much loved mother figure to me.  And I don't want to hurt her feelings although I fear I may have.  I hope, if she reads this, she realizes that this in no way changes my feelings toward and about her.

Anyway, this new meme deals with your birth month and date.  Each month is linked to a country.  You then post "I'm going to ______ for X number of months" with the number being the date of your birth.  So, I'd post, "I'm going to France for 27 months."  Of course, you are supposed to keep it secret from men, and in doing so, we raise awareness for breast cancer.

This one really annoys me.  Maybe because, we just came out of Pinktober, which is supposed to raise awareness.  Maybe because so many women with breast cancer or who have come through breast cancer can't even begin to wrap their heads around the opportunity to travel to a foreign country for many months.  We have no way to afford it.  We can't even dream of taking time off work because we carefully hoard our vacation and leave days, always wondering if we will need them for further treatment.  Maybe because it's so US-centric.

Here's what I wrote about it to the entire list of women (most of whom are strangers to me).  I'm sure I ruffled some feathers, but I just couldn't stop myself.

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  • I'm not knocking anyone, but if OCTOBER itself doesn't raise awareness, playing little games isn't either. Did anyone here go do a BSE or make an appointment for a mammo after getting it? You want awareness? I'll send you a picture of my chest. You can post it on your fridge. I bet I could find 12 women to send you pictures of their mutilated chests and you could make a calendar out of them. Maybe we all define awareness differently.

    I think that these little games make bc seem like a game, like something that people either win or lose. Sadly, most of us who "win" only do so temporarily. And win at great cost physically. My left arm will never be the same. Every time I move it, I feel where lymph node removal and radiation have damaged it. I have to massage it in a particular way every day or it swells. I have to wear a really not sexy or fun compression sleeve which just makes me stand out all the more. Even with tank tops, especially when exercising, every day. I can't get on a plane without wondering or worrying if doing so will fuck it up for the rest of my life. I have heart and lung damage from treatments, ongoing treatments. Great because heart disease kills more women than breast cancer.

    Here's something else that I've written about awareness.
    http://desideratajourney.blogspot.com/2011/05/awareness-pt-2.html

    and I'm not feeling sorry for myself or whining. Just saying that it's not a game. And it shouldn't be secret. Because this affects men, too. They get bc. And they live with those of us who have had it.

    Here's another little tidbit about awareness....early detection doesn't really save lives or increase survival rates. It improves quality of life, perhaps, because treatments don't have to be as invasive. But recurrence rates, over time, don't really change.

    I have a 19 yo student who has bc. I have a lot of friends who nursed for many years who are in their 30s who were diagnosed. Our treatments age us 10 years. They damage our brains. They increase our odds for Alzheimer disease. I have a brain that now scans like that of a 20 or 30 year drug addict. I've lost IQ points.

    It's just not fun. And to make the awareness memes fun and silly is, in my opinion, really disrespectful. I struggle to play real games now. I'm forbidden to play some games. I can't play volleyball. I struggle with the memory games that my kids like to play. I can't retrieve words for trivia games.

    So, yeh. I probably shouldn't have said anything, but I couldn't figure out how to get my name off this.

1 comment:

TC said...

I really "hear" your FB post. It needed to be said, whatever the outcome. I shared it on my FB page: boo-bee trap. Thank you.