Holding Us Together: Stories and Compassion

Note From Peg:
The following guest post, by Marie Ennis O’Connor, breast cancer survivor, and author of the Journeying Beyond Breast Cancer blog, is part of an ongoing series here, which focuses on using social media for good.

Last spring, I first met Marie online through a comment she left on my Mother’s Day weekend post, Links for Social Good, May 2009: Breast Cancer Awareness. I wrote the post as a tribute to my own mother, whom I lost to breast cancer, some twenty-five years ago, this winter.

Marie’s example is both humbling and inspirational, and I’m very honored that she agreed to guest blog, in honor of Oct., National Breast Cancer Awareness Month.

I especially appreciate Marie’s thoughts on the power of story-telling and compassion, in building and cementing our online communities.

In her own words, Marie Ennis O’Connor offers support for all those who have survived breast cancer, and who are integrating this transformative experience, with the rest of their lives…

When I was diagnosed with breast cancer five years ago, I relied on my circle of friends and family for emotional support. However, I often felt like I didn’t want to worry them with my fears and concerns, so the reality was, I kept most of it to myself. I found it easier to unburden myself at the cancer support center which I attended, but I still felt lonely and isolated at times, particularly as a younger woman with breast cancer in a predominately older environment.

Now, with the rise of social networks such as Facebook and Twitter and online discussion groups, the support landscape has changed greatly since I was diagnosed. Women with breast cancer have access to much wider networks to find support and get answers to their questions. We can now share our experiences online with others who understand and can support us – not just in our own localities, but in different states and even countries across the world.

Having successfully completed my treatment for breast cancer and returned to my “real life,” I was not prepared for the tsunami of emotions that hit me at times. I was filled alternately with relief and elation at being given a second chance and with anxiety, fear, and uncertainty in the months and years, after treatment ended. Finishing treatment can be a very unsettling time. You can feel cut adrift and alone – once the hectic round of hospital visits, treatment and check ups are over, what then? Often this is when the real psychological and emotional work starts.

I started a blog, Journeying Beyond Breast Cancer, about my personal journey to make sense of my cancer experience. I also wanted to connect with others struggling with the same questions and concerns as I had in this post treatment stage. Also, I hoped that in telling my story, others on the same path would find some resonance and the knowledge that they are not alone. I found that while there are many blogs, chat forums, and websites available for those newly diagnosed, or going through treatment, there is much less available on what it is like to have gone through the experience and how you integrate it with the rest of your life.

I have been surprised and delighted at how well the blog has been received and how many wonderful women I have connected with through writing it. I find a great sense of community and connectedness through the blog, so much so that I have recently expanded it into an online support community on Facebook.

It is comforting to know that there are others out there who truly understand what we are going through.  While family and friends can provide sympathy, it is really only those who are going through the same experience themselves who can truly understand us.  Then, there is the empathy and support we give each other – when I am feeling down, others lift me up.  And when those others are down, I am there to do the same for them.

One of my favorite quotes, which I have taken as a mission statement for our  community, is from writer, Barry Lopez:

Everything is held together with stories. That is all that is holding us together, stories and compassion.

Cancer strikes a severe blow at our sense of self and our sense of past, present and future. The apparent randomness of a cancer diagnosis shakes our sense of identity to its very core and nothing will ever feel certain again. I believe that as we tell our stories to each other, we rebuild our wounded selves, learning to integrate our past, present and futures selves. We tell our stories in order to heal; in listening to the stories of how others have walked their path, our own journey of discovery and healing is enriched.

I invite your readers to share their stories and thoughts at the Journeying Beyond Breast Cancer Blog and our group page on Facebook.  You don’t have to have experienced cancer to have something to contribute. While cancer was my personal catalyst for change, it can be any one of a myriad of life experiences, which may be your call to transformation. I write about universal themes of change and transformation and living an authentic life. We all have experienced pain, loss, joys and blessings in our lives in many different forms, and we can use those experiences to help others on their paths of recovery.

I leave you with one final quote from Nobel Prize Winner, Dr Albert Schweitzer, ( I have paraphrased it slightly by using the female pronoun) which beautifully sums up the philosophy behind my social networking:

Whoever among us has learned through personal experience what pain and anxiety really are must help to ensure that those out there who are in … need obtain the same help that once came to her.  She no longer belongs to herself alone; she has become the sister of all who suffer.

Welcome to the sisterhood!

(copyright Marie Ennis O’Connor)


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Contacting the Author: Content for a Convergent World – Peg Mulligan’s Blog

Please contact the author Marie Ennis O’Connor directly, for any rights to republishing this post. Peg Mulligan’s blog is protected by its own copyright, but Marie Ennis O’Connor owns full  rights to this post, authored by her, and currently hosted by Peg Mulligan at this blog.

Live with Abundance: Summer of Social Good

I’m just back from our last weekend get-away for the season, in our family camper. What a difference since our visit from more than a month ago, at the height of summer’s ease. Now, the days are crisp, the colors vivid even as the mood turns somber, and the shadows, of course, continue to lengthen. In this reflective spirit, I’m recalling one of the summer’s most buzzed about social media events—Summer of Social Good, presented by Mashable ~  The Social Media Guide, and Social Media for Social Good. Here, I’m hoping to preserve and carry on the energy and commitment from that worthwhile initiative.

To me, summer’s lasting gift is the sense of renewal that invigorates and sustains our efforts throughout the rest of the year. Though one commentator points out that the $55,000 raised for the four chosen causes may not have matched the expectations of the fundraiser’s ambitious announcement, or possibly the stature of its sponsors, we would do well to remember that the seeds planted from this milestone event are still bearing fruit, and that any awareness or funds raised during these hard times is that much more significant. As presenter Beth Kanter noted at the Social Good Conference in New York, “Small actions online and offline add up to make a difference.”

One Fund—Four Charities

According to Mashable’s announcement, the Summer of Social Good (which ran from June 1st till August 28th 2009) represents “the first large scale online charitable campaign to raise funds strictly online through the power of Social Media and the Internet over an extended period.”

The goal is to use the power of “Social Influence” via Twitter, Facebook, MySpace, blogs and other online media to raise an unprecedented amount for our fund, benefiting The Humane Society, LIVESTRONG, Oxfam America, and WWF. We are very excited to engage and encourage online communities to truly do something remarkable.

The Social Good Conference

The Social Good Conference, a one-day educational event celebrating the finale of the Summer of Social Good charitable campaign, was held at the prestigious 92nd Street Y in New York City, on August 28th. Mashable’s sponsors, Zappos and MailChimp, donated 100% of all ticket sales to the Summer of Social Good non-profit fund.

The conference featured presentations from well known and respected organizations and professionals within the space focused on “Social Media for Social Good,” including keynotes from Facebook’s Randi Zuckerberg and All For Good’s Jonathan Greenblatt. Thanks to Livestream, if you couldn’t make it to New York City, you can still view the conference videos.

How Nonprofits Can Use Social Media

According to the conference bio, presenter Beth Kanter, is “the author of Beth’s Blog, one of the longest running and most popular blogs for nonprofits. In 2009, she was named by Fast Company Magazine as one of the most influential women in technology and one of Business Week’s ‘Voices of Innovation for Social Media.’ She is the 2009 Scholar in Residence for Social Media and Nonprofits for the Packard Foundation.”

Kanter describes the Social Good Conference, in her excellent post, Reflections from the Mashable Conference. Especially helpful is Kanter’s summary of keypoints from Randi Zuckerberg’s opening keynote, on how people are using Facebook for online activism, as well as how nonprofits are using it for fundraising.

In her own presentation on how nonprofits can use social media, Kanter describes how she uses her passion for blogging and teaching to raise money online to help children in Cambodia. Specifically, she describes how her blog, a related wiki, the ChipIn Widget, and Twitter help her to fundraise. “Twitter is amazing fertilizer, and our tweets are seeds,” she explains.

Kanter’s inspiring presentation. “Be a generous geek–who uses social media for good” describes that “the 3 Rs remain the same: Relationship-building, Rewards, and Reciprocity.” She also refers to leveraging your social graph, according to the Archimedes Principle, described in New York Times bestsellerTrust Agents (see Kanter’s related post, Using Chris Brogan’s Archimedes Principle To Leverage Nonprofits on Twitter Suggested User List).

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Contacting the Author: Content for a Convergent World – Peg Mulligan’s Blog

Kicking off the “Live with Abundance” Series: Social Media for Good

n my “Finding the ‘Abundance Mentality’ with Social Media post last month, I talked about how social media, most especially Twitter, has raised my awareness of so many worthy causes and increased my personal “abundance mentality.” In “Links for Social Good, May 2009: Breast Cancer Awareness,” I tried to keep that giving and positive spirit going in this blog. That was when JBBC of Journeying Beyond Breast Cancer commented on my blog, and my abstract good intentions quite suddenly became more personal. Through JBBC’s visit to my blog, and my subsequent reading of her blog, “a cause” I supported (mainly, due to my own mom’s diagnosis and ultimate passing from breast cancer almost twenty-five years ago), became a real person again, whose voice and journey continue to inspire me. @JBBC and I interact on Twitter now, and her story is part of my awareness and vicarious emotional experience (what I guess we call empathy).

Over the last month, I read a post somewhere that expressed concern over whether social media and online experience in general may desensitize us to others’ experiences, or possibly hurt the way we interact in person. I very much believe that technology is neither good nor bad in itself, and it’s more how and why we use technology that determines its impact. In the case of JBBC’s blog, technology connected me to an amazing person, and made me more deeply feel her story, and by extension, the stories of all those who are going through cancer treatment, or like JBBC, are survivors of that treatment, moving forward with the rest of their lives. If social media technology can isolate and desensitize us, it can certainly also powerfully connect people and help us better emphasize with each other. Through social media, I have also attended several in-person events and met people whom I would have never known otherwise—a somewhat big-deal for a natural introvert (as many writers are) and busy, working mom of three, who doesn’t have a lot of time to socialize these days.

Perhaps like most things in life, social media technology is double-edged, with balance as the key.

Enter Jennifer Bechard, also known as @Jenn1423, on Twitter. Throughout the course of this month, a persistent and cheerful voice kept sending me the occasional shoutout, about supporting the Detroit Hydrocepephalus WALK. I’m from Boston, and I had no idea what hydrocepephalus was at the time, so the fundraising effort didn’t immediately capture my attention. —But there was something about Jennifer’s avatar (the picture that’s part of her profile on Twitter) that I instantly responded to and liked. I think it was (and still is) her smile and warm brown eyes.

So, when I was looking for a topic for my “Live with Abundance” series this month, I thought of all Jennifer’s diligent efforts to raise awareness on Twitter, and that’s mostly why I decided to highlight her fundraising effort. I was also curious about the word and condition hydrocepephalus, which were totally unfamiliar to me.

Though I knew Jennifer was Co-Chair of the Detroit Hydrocepephalus WALK, I didn’t realize that Jennifer herself was suffering from hydrocepephalus, or the full extent of what that means, until I opened her moving, determined, and faith-filled story, in my e-mail.

Is there a dark side to social media? Sure, probably, and you can read about it, here. But when you read Jennifer’s story, and the stories of amazing strength, inspiration, volunteerism, and social action that I plan this “Live with Abundance” series to present, you can rest assured that social media has a bright side, too.

Links for Social Good, May 2009: Breast Cancer Awareness

As a follow-up to my last post Finding the “Abundance Mentality” with Social Media, I’ve compiled several links for social good, which represent the community focus that I’ve consistently found on Twitter, where various organizations and supporters of those organizations often send out links to nonprofit web sites, fund-raising activities, or community outreach programs.

The 12 for 12K Challenge: Changing the World through Social Media is a blog that embodies the spirit of “social media for good,” with the goal “of raising a minimum of $144,000 for 12 charities over the course of 2009, with a new charity being supported every month.” (For the month of May, the 12 for 12K Challenge is raising money for The Hospice of Peel.)

This Mother’s Day weekend, I choose as my special focus, Breast Cancer Awareness and Women’s Health, to honor the memory of my own mother, who lost her battle with breast cancer, more than 24 years ago.  So many advances in detecting and treating breast cancer have occurred since my mother’s illness, but so much more still must be done, for the sake of all the women in our lives, most especially the next generation that our daughters represent.

Note: Some links apply more to Boston readers, but I include these initiatives as models of successful fund-raising and community outreach, which might work well in other locations.

Connect: Marketing in the Social Media Era

The Project 100 (a group of 100 authors) collaborated more than six months to create a not for profit, collaborative book, Connect: Marketing in the Social Media Era. According to J. Caswell, the Project 100’s coordinator, this is apparently “the first book to publish tweets [from Twitter], and one of the first to create a collaborative not for profit book.”

“The book is $19.95 plus shipping and handling. All profits will go to Susan G. Komen for the Cure. The Target is to raise $5000 for Susan G. Komen.”

Limited to 400 words each, authors in the Project 100 offer bite-sized wisdom and practical advice on social media marketing. The tweets interspersed throughout the book highlight the quotability, immediacy, and portability of Twitter’s 140 character limit messages. This book is a timely, conversational read on social media, from those in the trenches.

Boston Mammography Van

Boston’s Mammography Van, a community outreach program sponsored by the Dana Farber Organization, offers low-cost mammograms and health education to all women, with or without insurance, regardless of ability to pay. If you have health insurance, we will bill it. If you do not have insurance, we will help you apply to see if you are eligible for state insurance plans, and you can still receive your mammogram on the Van. No one is turned away due to lack of health insurance.

Boston Bakes for Breast Cancer (Monday, May 4 – Sunday, May 10, 2009)

I wish I had known about this event earlier in the week, but if you are still looking for something to do with Mom in honor of Mother’s Day, there is time tomorrow to enjoy a scrumptious dessert, at one of Boston’s many fine restaurants:

Join participating restaurants, bakeries, and cafes in Boston and the Greater Boston area during the week of May 4th through May 10th for the 10th annual Boston Bakes for Breast Cancer. 100% of the proceeds from select desserts at various establishments benefit breast cancer research and care at the Jimmy Fund ~ Dana-Farber Cancer Institute.

Boston Bakes for Breast Cancer 2009 is dedicated to Lucy Fonseca, breast cancer survivor and grandmother of Four Seasons pastry chef Tim Fonseca.

Susan G. Komen for the Cure and Major League Baseball are “Going to Bat Against Breast Cancer to help your home team hit one out of the ballpark”.

Baseball the Way It Was Meant to Be On Mother’s Day, May 10th, Salem Red Sox Go Pink

 The Salem (Va.) Red Sox, the Carolina League Advanced Class-A Affiliate of the Boston Red Sox, will be hosting Pink in the Park Weekend from today through Sunday, May 10. The Salem Red Soxwill be collaborating with Susan G. Komen for the Cure throughout the weekend. Pink in the Park Weekend will span four games and include free pink ribbons for fans at each game, as well as pink baseball and T-Shirt giveaways. Pink in the Park Weekend is presented by Kroger.

Avon Walk for Breast Cancer

The Boston Walk occurs on May 16 -17, 2009 this year. A good friend of mine has participated in Avon’s walk these last two years, in honor of my mother’s memory, another mutual friend’s mother who is a breast cancer survivor, and the many other sponsors who have shared their moving stories with her. Please consider sponsoring this fund-raising effort or the dedicated efforts of someone like my friend.

If you know of any other breast cancer awareness, support, or research initiatives, please let us all know in the comments.

Additional links for social good are always welcome, for breast cancer awareness, and other worthy causes, as I plan to make this a regular, monthly post.

Related Links:

  • 10 Breast Cancer Myths from BreastCancer.org
  • LifeSpy–Bloggers Who Write About Living With Cancer
  • Journeying Beyond Breast Cancer: Making Sense of the Cancer Experience
  • Which Social Network is the Most Generous?
  • The Pollyanna Principles – Chris Brogan’s video book review