By Gwen Darien
On the Road With Connie
By Gwen Darien
I’ve just finished a mini media tour. Connie Mielich, who graces this issue’s cover, joined me recently in Pittsburgh, where we appeared together on a local morning news show to talk about the importance of patient participation in clinical trials. While we were there, we also did some newspaper interviews. And, just a few days earlier, NBC Nightly News did a short profile of me and the work of CR magazine—part of a series of human-interest stories about cancer that the network produced for its affiliates, to coincide with the Stand Up to Cancer television fundraiser (a program for which the American Association for Cancer Research, which publishes CR, is the scientific partner).
Meeting Connie in person, along with her loving and supportive husband, Tony, brought to life her story—one that she shares so honestly and directly with CR readers in "No Ordinary Life." Connie, in turn, told me that she felt she knew me through the stories in my editor’s letters even before we met, and that she felt a strong sense of shared experiences between us. Despite significant differences in our lives, Connie and I have a common history as long-term cancer survivors and as women diagnosed at a relatively young age.
After talking with Connie, and being interviewed five times in just a few days, I started thinking about the ways in which we tell our personal cancer stories. Storytelling is very important to many cancer survivors, whether it’s verbally sharing our experiences with others, or writing about them on paper. It allows us to connect with other survivors, as well as with others around us. Telling our stories provides us with a framework through which we have the opportunity to understand our experience with cancer. It gives us the possibility to create a narrative of hope and to formulate plans of action.
Reflecting after my recent media tour on how I tell my story, I wondered: Had it changed over time, and what rose to the story’s surface? The stories I tell in my editor’s letters are generally very personal, but I have the chance to focus and edit them. Being interviewed is an entirely different process—refining the story is much more difficult. However, while my words may be more carefully chosen when I control the final copy, I realized the story is very much the same.
Looking back, I don’t think my cancer story has changed so much as grown over the years. I still talk about the unreality of a diagnosis, of the initial realization that you are really sick, that something is very wrong but it is not named. I recall the memory of going from one chilly exam room to another, tested and prodded, the subject of hushed conversations. I can still summon up the cold, deep fear of waking up in the middle of the night during treatment, afraid that I was going to die, thinking that I was only 35 years old, how could I be so sick? I remember the loneliness of having cancer, despite a very loving and supportive family. I think about the jubilance of responding to treatment and the hope that this signaled a long-term remission.
In the years since I first recounted these experiences, shortly after diagnosis, what is different is that my cancer story has become integrated into my life story. And, as our lives progress and new chapters are written, the perspectives through which we view our lives continually evolve.