We’re continuing our guest post series this week with a post from AnneMarie Ciccarella.  AnneMarie talks about the power of community.

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I can barely remember what I did yesterday, and yet, this is vivid.

I can see myself sitting on the side of my bed.  It was 3AM and sleep was no where on my radar.  It was November of 2011, just months after the weekly #BCSM chat was launched.

Because Cancer Scarred Me, I spent much of the night walking around in circles. I couldn’t calm my nerves and I wasn’t about to use one of my 3AM “talk me off the ledge” calls.   I had an appointment the following day and I was sure I would be getting bad news.  Without even allowing Dr. Google in, I knew the treatment would be torturous.

I sent a message into the world of twitter.  Maybe if I just purged the fear, I’d be able to get some rest.

“Can’t sleep. Appointment tomorrow. So scared to hear bad news. #BCSM”

I was still a dim twit at the time.  When did this “#” turn into something called a hashtag?  It was the dreaded pound sign on the phone pad that forced me through endless robots before finally being connected to a real live person.  If I am to be totally honest, in my mind, it was still a tic-tac-toe board.

A moment later, it was the most powerful symbol on the globe.

“AnneMarie, I know how you feel. You aren’t alone. Try to sleep.”

I stared at the computer screen and the tears began streaming down my face.   A complete stranger, someone from South Africa, who was following #bcsm, saw my message and reached out to comfort me.   This simple act of kindness not only enabled me to finally rest my mind and get some sleep, it made me realize an exceptionally special community was growing.

This was no longer just a chat that took place for one hour on Monday evenings.  It was the beginning of an extraordinary movement.  At 3AM on a lonely and fearful November morning, #BCSM was woven into the tapestry of my life.

Friendships have been formed that are as real and genuine as anything I have in my 3D world.  There is love.  There is unconditional support and acceptance.  Good news is celebrated, not so good news is NEVER dismissed.  Sometimes, you don’t want a cheerleader.  Sometimes, you want someone to say, “THAT sucks and I’m so sorry.”  Many times, “conversations” that begin like that, strangely turn into a giggle session.

The chat takes care of one hour a week.  The hashtag is the umbrella under which we all stand the other 167 hours.  The batsignal.  Like many others, I try to reach out when I see a tweet appended with that hashtag. Most always, someone is around to do exactly what was done for me when I was having my melt down.  The caring is palpable.  The love jumps right through the monitor.

Never was this more apparent to me than it was this past January.  I was with my mom who was having a biopsy of a suspicious area on her rib.  It was simply a biopsy.  I wasn’t expecting results and therefore, I was solo for this outpatient procedure.  I was texting my family with updates throughout the afternoon.  I sent them a rather funny picture of her just as she was getting ready to go in for the biopsy.

Over the next two hours, the routine biopsy was no longer routine and I was alone.  First came the good news that the procedure was over; then, her lung was punctured.  Texts to my family, limited information to relay despite their repeated questions sent my anxiety into the stratosphere.  And then, information that I could not, WOULD NOT text to anyone.  I was in a panic over the lung until it got far worse.

The doctor came to tell me my mom’s cancer had metastasized.  She knew and I had to go face her as soon as they stabilized her in the recovery room.  Once again, I was in that familiar place: walking around in circles unable to calm my nerves with nowhere to turn.

I turned to twitter.  I turned to the COMMUNITY that is #BCSM.

“I was not supposed to be a #FearlessFriend to my mom.  It appears she is #metastatic.  After 5 years and 4 mos.  #bcsm”

The outpouring of love and support was instantaneous and unconditional and it came at me in waves.  I wasn’t alone.  I was lifted by global support of many people, most of whom I’ve only connected with via those short 140 character twitter bursts.

The ways in which the #BCSM community has enriched my life and expanded my world are impossible to capture with mere words.   Having the community step from twitter to Facebook and now to this website speaks volumes to the vision of Jody and Alicia.  Having Deanna join forces brings a depth that truly can’t be described.

Mostly, it’s about all of us…. whether we choose to speak or we choose to quietly watch and learn, we are all connected.  We are all making a difference no matter how grand or how small and we are all learning that together, we are stronger than the sum of our parts.  Together, we can and will change lives.

Me?  I’m simply grateful for the people that this community has brought into my life.

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Editor’s note:  Thank you AnneMarie for sharing your thoughts on #BCSM.  This global community continues to grow each day! To read more of AnneMarie’s work, visit her blog, Chemobrain, or follow her on twitter @chemobrainfog.

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11 Responses to Guest Post: AnneMarie on the Power of Community

  1. Beth Gainer says:

    Wonderful post, AnneMarie! #BCSM is a terrific community, and I’m glad you have had such support during horrific times.

  2. Catherine (Facing Cancer Together) says:

    :) Very touching post, AnneMarie - my eyes are a little blurry from the emotion your writing triggered. At the end of next month I’ll be going in for a very important scan, and you can bet I’ll be using the #bcsm hashtag to simply not feel alone, and to give a place for my nerves to vent. It’s such a powerful thing. The online community is in itself a miracle, and I love how it connects us all.

  3. Jody Schoger says:

    What a beautiful post, my friend.

    You are one amazing force. To think, to even dream, that something we started is reaching people at a vulnerable time, with love and hope — is everything to me.

    Thanks so much for writing,

    Love,
    Jody

  4. AnneMarie Ciccarella says:

    Thank you, my dear friends for your kind words. I saw all of the beautiful compliments on twitter and when I realized I couldn’t acknowledge all of them, the best thing I could come up with was to say a heartfelt thank you in this space.

    I cherish this community. I see it growing in leaps and bounds. It thrills me to read words like “#bcsm is the hashtag to watch” or “there is such a sense of community” ….. Your vision has changed lives.

    I am so deeply touched by what has grown from a tic tac toe board followed by a few letters….

    Much love to all,

    AnneMarie

  5. DrAttai says:

    You described perfectly what makes this community so amazing. Unconditional love and support, pretty much 24/7. Who could have predicted this??? So honored to be a part of this incredible group.

  6. Idelle Davidson says:

    AnneMarie, you exemplify the best of social media. You are everyone’s fearless friend.

    Love,
    Idelle

  7. Scorchy Barrington says:

    I loved this post so much. When I experienced my own meltdown in December, I broadcasted the “bat signal” just as AnneMarie did and three people from around the world pulled me back from the ledge. When I’m feeling bad I tweet and support returns instantly. And it doesn’t just flow in one direction. When I see the #BCSM bat signal I make it my priority to reach out. We’ve all been there and can draw upon our experiences to help others.

    The best things that grow on the internet are those that are organic. The #BCSM tree has strong roots to anchor it and its branches are strong and supportive. We all perform multiple functions: sun, shade, nutrients, water. #BCSM is an astounding entity and represents the very best of social media.

    It’s a privilege to be a part of this knowledgeable and nurturing community.

    -Scorchy

  8. Diane says:

    Eleven months ago I didn’t know what Tweeter was let-alone a hashtag. Years ago I had started a blog with the help of a fellow dog lover who had one. I wrote about training dogs. When I was diagnosed back in July 2012 I converted the blog into a venting zone, and a place to keep family and close friends up to date all in one place. So of course I began to read other BC blogs and the comments left by readers. One day while reading a fellow BC blog I noticed in the comments where a gal had referred the author to another blog. Following that hyperlink I ended up at The Sarcastic Boob’s site. Naturally, like everyone else I was entertained, educated, and in aw of her ability to get a point across. Alongside her blog I saw this link called Tweeter, and at some point would read something in her blog about a meltdown and the overwhelming responses she got from Tweeter, creating a web of sorts to catch her in her crisis. Needless to say my next step was to figure out how Tweeter worked. Most the time I just lurk, especially for the #BCSM meeting since the Tweets just fly by and the audience all seem to be professionals at it by comparison. If I’m not mistaken Scorchy stumbled into the Tweet zone in a similar fashion due to BC.

    Tweeter has led me to many insightful posts that others have found educational. Most of the people I follow have experienced BC. I wish more non-techno savvy BC patients had access. Even my silly vent blog now collects more company from strangers around the world with the disease than its initial intention of being for family and close friends which has been a godsend for my sanity.

  9. Carolyn Frayn says:

    Thank you for this beautiful post AnneMarie. I’m so glad that you and your Mom share such a wonderful love… When you reached out to me you helped me feel welcome in the world of #bcsm. I still tread the waters a bit but my twitter chops are growing, I just wish my own chemobrain and nerve damaged fingers could keep up with the chat! Thank you for being there darlin’… stranger one minute, #fearlessfriend the next. What an amazing accomplishment; Jody, Alicia and Deanna… I wanted to add my heartfelt gratitude to you all… much love, Carolyn

  10. Nancy's Point says:

    Hi Ann Marie,
    Thank you for writing this lovely post. I think you are perhaps our #BCSM Twitter Queen! Thank you for all you do on Twitter and elsewhere. Thank you for your passion, for caring so deeply, for being my friend and for being a friend to so many others as well. Thank you for being YOU!

  11. Efrat says:

    Dear Anne Marie, Jody, DR. Attai and all of you courageous women, #fearless friends, this community is a true miracle! The unconditional understanding, sharing, supporting, are truly enchanted and rear, and for me, as someone who lives in another continent and another time zone, feeling all this love and caring travels all that way and filling my heart with courage and empowerment, is not less then a magic.
    You have started a life changing movement, a stream that washes away all the barriers that were accumulated in the decades ever since women were living in tribes, and helping and supporting each other as a way of life.
    I know that in a few years newly diagnosed women will not understand how did women cope before #bcsm was out there. Well, actually, I don’t get it by now…
    Thank you AnneMarie for your beautiful words (you made me cry at work…) And thank you all #bcsmers, for the hope and friendship you spread.
    <3

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