Tuesday, February 5, 2013

The Ties that Bind Us

It didn't matter where I was.  A room full of women at a support group.  Sitting next to a "young-ish" woman in my oncologist's office.  Alone in front of my laptop.

We'd find each other.

They were there, these women like me who heard they had it -- that word.  That word I hate giving breath to, life to.  I won't.

Years ago I was afraid to say it, but for different reasons.  When my mom was diagnosed in 1983 I'm sure I never told a soul.

Who could say those words?  No one spoke of it then.  She carried it alone.  How hard that must have been.

Even after she died, I wouldn't say it just so I could pretend it wasn't still out there somewhere searching for others.  Or me.

When it found me in 2009 I thought I had to bear it alone as my mother did.  That's what I knew and that's what I did.  Lugging it with me wherever I went, whatever I did until I couldn't hold it anymore.  I finally spoke its name hoping to ease its grip.

In a support group I had somehow gathered the nerve to attend I met women openly describing their experiences, dealing with it, even laughing about it.  Death hadn't come to this door cloaked in cancer.  At least not yet.  Not on that day.  We all knew too well that it could and when it showed up, it wouldn't differentiate between us.

It wasn't easy at first, to say the words out loud.  Voice what had happened to me, to my mom all those years ago, but these women listened.  They got it and I inhaled their support like a drug.  I wanted more.  On various levels each and every one in that room related to my story and it was intoxicating to be around women who knew what I was talking about.

Months later I started this blog.  Something I never thought this shy girl would do, but I had to let out my experience, find others like me.  I knew they had to be somewhere and I craved their words.  I sought connection by saying, "I know how you feel" or found vindication through their comments expressing the same.

What I unknowingly stumbled upon changed how I saw cancer forever.  We were wrong, my mother and me. We were far from the only ones and no one had to take cancer on alone, but perhaps it's the initial self-imposed isolation that drives so many women to seek answers on the Internet, to search a vast void for some personal understanding that's sometimes so hard to find in people closest to us.

We just had to learn where to go.  Staggering numbers of women with breast cancer -- All ages, all stages, all types, all treatments, all different, but all tethered together by those words.

It's more than 2 years since I started Bringing Up Goliath and though I've never stopped reading other bloggers, I faltered writing my own posts.  For a long time I wrote about life with cancer front and center and as it began to take a back seat, I questioned every post, every topic.  Were my words less important now that my day to day no longer revolved around active cancer crap?  Now that reconstruction was finished?  What did I have to say?  So many have it so much worse.  The blogosphere should be theirs.

I stopped writing, not because I wanted to, but because I was unsure how to proceed.

Yesterday, seeing Fearless Friends rush to support a blogger who had received the worst news and then later joining the amazing #BCSM tweetchat in memory of friends lost to Metastatic Breast Cancer, I remembered why I was here in the first place.  I remembered how I wished my mom had known this community.

Maybe posts don't have to be about cancer all the time, maybe it's enough saying I'm here. This is what I'm dealing with, how about you?  Maybe something I said will spark recognition in someone and they'll get what I'm saying despite the differences in our disease.  Maybe they can lighten their own load.

We're the same.  We've been forever linked by those words.  Not a whole lot of people can say that, (lucky for them) so it's a good thing we've found each other and I guess I don't ever want to give that up.



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26 comments:

  1. It's an amazing place, our cyberspace, our blogosphere, twitterverse, all of it. Heck, no, every post doesn't have to be about cancer. Some of my most popular posts haven't been about cancer at all. Our blogs don't have to be about anything but what each of us wants or needs to say. I'm glad you're still here saying it, Stacey. xoxo, Kathi

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    1. Hi KK, it is an amazing place, always. I feel very fortunate to have found it. Thanks for the reminder that is okay to write about other things. I lose sight of that sometimes, but you're right. We don't need to be so serious all the time. xoxo

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  2. I'm so glad I found you Stacey... you were one of the first blogs I started reading when I ventured into [what I feared were] the murky depths of cyberspace. How wrong I was. This space is sacred. A lifeline. A mental buoy. And I agree with Kathi... our blogs can be about anything and everything we are living through. I look at my blog as the one thing I can control in all this crappy BC business. That is a pretty special thing. And so are you. Keep writing. More, please!
    xoxo

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    1. Renn, thank you so much for this comment. You're the first person to ever tell me I was one of their first bloggers. That makes me happy I shared all that I did. Yay. I miss writing and I promise I'll try to get back into it. It's nice knowing you're out there.

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  3. It is everything to just say, “I’m here.” And if life moves away from that cancer crap (at least, the daily bits of life) – then please share with us those stories. That’s just as important in this community as the crisis and the progression. Life away from the emergency is what many of us dream about, and it’s just as much part of this community as the crappier parts. This is a great post. I hope it encourages others to keep writing as well. ~Catherine

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    1. Thank you, Catherine. You bring up the finer points of this community, some that I overlook at times. I know I'm interested in everyone's whole life, not just the cancer. I need to remember that others may be as well. Thank you for reading and your thoughts on this. xoxo

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  4. Oh Stacey, I'm so glad to read your words today, or any day you choose to write them. I'm so grateful to have this wonderful online support system too. I'm so grateful you are part of it. I vividly remember that day when I first read your comment on one of my first posts and you said this, "Hi Nancy, I’m so glad I’ve found your blog. I’ve been looking and looking and have had trouble finding anything… a blog about someone like me." (Yes, I had to go find that comment). All of us who have heard "those words" are forever linked. And no, you absolutely do not have to always write about cancer stuff. As my daughter often reminds me, it's your blog - you can do whatever you want. Thanks for writing, Stacey. Thanks for being "out there."

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    1. Nancy, too funny! I can't believe you found my first comment, but I actually do remember writing it. I was so happy to have found you. Not only for the breast cancer part of it, but our mothers! I felt, finally, there was someone who can see the whole picture as I do. For years there had been no one. Thank you for your blog, for putting everything into words for us to see and for being my friend. Hugs to you.

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  5. We are tethered together by those words. I too, wish my mother would had known this community. Unfortunately, she had no smartphone or computer just her loving family who really didn’t get it.

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    1. Diane, it's nice to meet you. I just looked at your blog. Another dog lover I'm happy to see. Did you mom go through this, too? It sure does suck, but I'm glad you've found this incredible community. I hope it helps. Thank you so much for reading. I'll be back to your blog very soon. xoxo

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    2. Yes Stacy, my mother died of MBC in August, I was diagnosed in July. This community does help tremendously. Thanx for stopping by my blog. Your Shepard is beautiful. Diane

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    3. Diane, I'm so sorry for your loss and your own diagnosis. Cancer seeks new levels to be crappy, but everyone here gets that and that's why I love our corner of the blogosphere so much. You can say anything. Thanks for saying my dog is beautiful. Yes, he was. He died a little more than a year ago. We were heartbroken to lose him. Even now, I miss him. I've written about him a few times here and as with cancer, the support I was given just blew me away.

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  6. WAY powerful, Stacey....

    Understanding that stepping back "in" means you are helping those who are just setting foot on this path. We are a community. I am six years post chemo (almost), yet I feel something about the fear and loneliness you describe so beautifully and so perfectly.

    Hugs to you...

    xoxo

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    1. Hugs to you, AnneMarie. I know you're going through a hard time, but I also know you get the power of this community we've found. Thank you for your part in it and being such an inspiring advocate on behalf of all us. Thanks for reading and sharing your thoughts. xoxo

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  7. dear stacey,

    i was so happy to see your post today; beautifully expressed thoughts and feelings that so resonated with me. just 6 months ago after being deemed NED, i found this marvelous community, this sisterhood that is so alive with such diverse experiences and stories, binding us all together because of two words - breast cancer. i loved the account of your first foray into the support group and revelations about not feeling so isolated and lonely, and remembered that was exactly how i felt when i first started reading and commenting on them, and was welcomed with open arms with such amazing kindness and acceptance. you write beautifully and eloquently with a voice of truth and your voice makes a difference, no matter what you write about.

    love, XO

    karen, TC

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    1. Karen, I'm so happy you found us! That's always nice to know. I love sharing here if it means somebody relates to it. I'm glad you did. I'm glad you're NED and thank you so much for reading and writing such a lovely comment. xoxo

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  8. Karen,
    I'm glad you are writing again. I started reading breast cancer blogs a year ago, finding something in cyberspace that wasn't happening in my everyday life here in NOLA--meeting women who were experiencing life after receiving a breast cancer diagnosis. All of these amazing blogs were giving me support, adding new perspectives, making me laugh and cry, offering suggestions of how to cope with this new reality. However, it was a one-sided relationship in many ways. I was a lurker, thinking that I'd like to write too, but not thinking my voice mattered as much. With a gentle nudge from my therapist, I finally graduated from my Caring Bridge blog to my life with bc blog in November. I still feel a bit of the one-sidedness of this cyber experience, but I remind myself that making lasting friendships takes time for me. I appreciate hearing another voice who has been unsure if she has anything to add to the mix. It gives me encouragement that I should keep writing. Thank you!! :-)
    JoAnn

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    1. Whoops!
      I meant to say Stacey! It's been one of THOSE days!
      JoAnn

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    2. JoAnn, thank you so much for writing. I'm glad you did. I agree with you. I love reading blogs. It amazes me how different we all are, though in some sense our stories are the same. I enjoy gettting to know the other writers and not from a cancer standpoint, but just learning about their lives, who they are. Lurking is fine if that's how you want to go,but I'm glad you're writing. Your blog is beautiful and I'll be back to read more very soon. I love New Orleans, although I've only been there once. My niece is at Tulane. I hope to hear from you again.

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  9. Stacey, this really struck a chord with me. No matter our outcomes, treatment protocols, stages, we are all a united community of people who have heard those fateful words. I love your posts, and I admire your courage, candor, and willingness to be vulnerable. We are an amazing group here in the blogosphere, and I'm so glad you are writing. My well had run dry lately, but I am working on some posts. Gotta keep writing!

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    1. Hi Beth, there's something about writing into the blogosphere that makes vulnerability a bit easier to take. I hesistate for a bit, but the supportive and understanding comments I receive from you and others make it all worthwhile. Like right now I'm thinking, what else can I share? Anyway, I understand a dry well. Take your time and your inspiration will come along and I can't wait to read it when it does. xoxo

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  10. So glad to read some more from you! You are a wonderful writer, Stacey.

    I wish I had tried harder to find a support group when I was diagnosed with cancer. I think it would have helped me heal and get past some anger I felt.

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    1. Hi Ginny, so nice to hear from you! I think support groups are like bathing suits. You just have to keep trying on different ones until find the one that fits right. Easier said then done and it gets hard having to sit with a group you're uncomfortable with, but in the end I found it worth it. In any case, you have this entire virtual support group at your fingertips. Hope all is well with your beautiful girls. Enjoy the snow!

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  11. "We've been forever linked by those words" Stacey this simple sentence at the end of your terrific piece holds a world of meaning for many of us. Through the past four years since I started blogging I have learned the true meaning of connection and compassion in an online community and I will forever be grateful to those who contribute to it.

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  12. Glad to "meet" you, Stacey. I'm new to the blogosphere, although 2 years out from treatment. I don't know why I didn't look for others sooner, but so glad to connect. Not only is it okay to post about non-cancer topics, sometimes it's a welcome relief. Even though cancer has impacted our lives, it's not who we are and it's good to be reminded.

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  13. I am so glad you are keeping up with your blogging, Stacey. I love the Bradbury quote at the end. Writing invigorates and invites community. I am so glad to be back in the blogosphere. xo

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