“Survivorship” didn’t exist in the serious illness world 40 years ago. Today, survivorship implies both surviving physical illness as well as moving on emotionally despite the trauma of having had a significant illness. Rob Tufel, LSW, Executive Director of CancerCARE Points in San Jose, provides one of the best definitions I’ve seen.
Tufel looks back to the Latin root “vivere”—to live—and adds, “a survivor is someone who is ‘super alive.’ (http://www.cancercarepoint.org/pdf/current_newsletter.pdf) Whether newly diagnosed or ten years out, ‘living’ has been altered and perception of life changed. Things never noticed, both good and bad, come into sharp view. Formerly mundane moments take on new significance.”
True, as a survivor, I feel that there are significant benefits to a new perspective gained through illness; but as transformative as significant illness can be, it can also be a very confusing period emotionally. This is where the emotional component of survivorship sneaks in. At time of diagnosis, life as we know it is taken away. To re-engage in life—to feel safe again and rebuild—takes time.
In graduate school I read a book called Transitions, by William Bridges (1979, updated 2004) Thank goodness for this book! At age 24, I had the rug pulled out from underneath me. I felt like a bouncing ball inside a confined space, with nothing to latch onto in order to propel myself out. If I embraced life and moving forward, would it all be taken away again?
For those of us who have been there, the emotional ramifications of physical illness may continue for many years following the brunt of the medical treatment. Why couldn’t I just get over it? I’m sure a lot of other survivors feel this way. Perhaps that is why more and more survivorship programs are being developed.
Initially, I coped with my health challenges by relying on what I knew worked in the past: looking on the bright side, relying on supportive friends (that is my extroverted side talking), reading self-help books and setting goals, making lists of ways I could help myself grow and change. In other words, I coped as a “thinker” type. Although being a strong “thinker” worked wonders to help me “get through it,” thinker strategies actually interfered with what I really needed to do, which was to feel.
In order to move forward, I needed to really acknowledge—and then accept—what I had lost. That was the hard part for me. As soon as I let myself feel sad about everything I had lost—my innocence, my youth, my fertility, my dream career—I realized there was a tremendous amount of sadness inside me. I had never let myself feel it because I was one of the lucky ones. I had survived something that no one on record had survived. I had no right to feel sad. But in fact, I did.
With 80% or more of children diagnosed with cancers now surviving, this survivorship is not without its costs—there are late effects from treatment occurring decades later, or perhaps other permanent, more immediate changes one needs to deal with physically and emotionally.
The stories we tell about ourselves and share with others about our experiences with illness affect how we feel about these experiences. Journaling is a way to give voice to the story that is in us, whether our story is of diagnosis, or survivorship.