Friday, June 26, 2009

Clueless in New Jersey and Elsewhere

According to, which has posted an article from, dated June 25 -- before Farrah Fawcett and Michael Jackson died -- sad stories about people's personal battles are just too...well...sad.

The story (the link to the full story below) opens describing how Rep. Rosa DeLauro of Connecticut shares her personal battle with ovarian cancer and how Indiana Senator Evan Bayh talked about his mom's death from breast cancer.

Then, only a few sentences later, the "news" article -- and I use the term "news" lightly -- says:

"When it comes to the debate over health care reform, the personal medical narrative has become something like a key card: You can’t get in without one. Advocates on both sides of the health care debate are stockpiling real-life stories from average citizens. But in the world wrought by talk-show confessionals and reality TV — and in a political environment where an admission of economic pain and suffering may score some points — members can be counted on to invoke their own medical sagas as well."


Now let me make sure I'm understanding this correctly: people's personal narratives are equated to talk-show confessionals and reality TV? So, like, when I was throwing up from chemo, that was equivalent to me being on yet another Jerry Springer "Who's Your Daddy" saga?

Since when has fighting cancer, or any condition for that matter, become a "saga"?

The personal narrative of one's own experience with illness or discussing a loved one is one of the most refreshing concepts to emerge. Everyone is telling his or her story lately -- thanks to vehicles like the blogosphere -- because the truth is this: many politicians don't care much about healthcare topics....until it hits home for them personally.

In fact, many people are walking around clueless all over the place, denial-zombies -- until illness strikes their loved ones or themselves...or celebrities. But even then, as I discussed in a previous blog, denial is this fog that creeps over even those whose family and friends have an illness.

Here's why the personal narrative is so important: because people afflicted with an illness or condition are NOT heard by society. That's why the personal narrative has become so popular. People want to hear the stories of those who are suffering -- because it keeps us human and humane, and for those of us who have struggled/are struggling with a condition, it reminds us that we are not alone in our suffering.

Where's the "saga" in that?

Oh, and later in the article, it gets real good when NY Congressman Peter King says that "...everyone has a story sadder than yours...we are in the age of Twitter, where we are supposed to let the world know what you're doing every day,...but I have a certain zone of privacy not just to protect yourself but to not be imposing on other people."

Yeah, Mr. King, you are imposing your pro-denial views on me, and I resent it.

But to give this online publication credit, it avoids becoming strictly a propaganda piece by quoting Molly Daniels, Vice President Advocacy Field, for the American Cancer Society Action Network: "What I've heard time and time again and what we've heard throughout the organization -- people want to share their stories, so it doesn't happen to other people."

We need the personal narrative because we live in a culture where people are so consumed with brushing ugliness under the carpet, that they don't want to hear the voices emanatiing from underneath it.

I think I'll Twitter now, Mr. King.

Beth L. Gainer is a professional writer and has published an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She teaches writing and literature at Robert Morris College in the Chicago area. She can be contacted at and She also blogs on the adventures of her cats, Hemi and Cosette, at



  1. Another excellent post. Narratives is what gets (and keeps) people interested in causes. You're so right about them keeping us human and humane.

    I might not be interested in breast cancer if I didn't have boobs, didn't have friends (perhaps, also boobs :), who hadn't lived through it, or hadn't otherwise heard the countless stories of women who are just like me and to whom I can relate who have lived through cancer.

    It's because of these women that I'm on top of getting my girls examined regularly. Keeps me in that necessary realistic place where breast cancer doesn't just happen to her, her or her, but it can happen to me. So I stay proactive.

    Keep writing, my friend.

  2. Thanks for your support, as always Jeannie. The truth is, as you well know from your Mr. Busypants blog, is that telling stories and sharing highs and lows are crucial to help people. Real stories by real people are what matter.

    And because of your writings, I have become much more educated about autism. The truth is, so many people are affected by almost any condition, it is very difficult to not know anyone who is affected. And when it affects others, it affects us, too.

  3. I agree! We all have a story to tell, and it not only helps US heal, but others heal through the power of our words. It keeps us all humanized (throughout the de-humanization secondary to our technologically advanced culture which widdles things down to simple text messages and 140 twitter characters) and all interconnected. Rock on girl!! i cant wait to read YOUR book :)

  4. Thanks so much, Alicia!! Yes, advances in technology are great, but there's that dehumanization that can come alone with it. The narrative is so important to put a face and a story with a condition or experience.