July 27th, 2010
The Empowerment Rally this past weekend at CTCA really inspired and humbled me. I got to speak on a panel with four other remarkable people and reflect on what it means to be a self-advocating patient and what medical care that considers the whole patient might look like.
(If you didn’t get to see it and have an hour, I thought it was worth watching.)
I know I participated, but honestly, I felt like a humbled spectator. Maybe it’s because I am not totally done with my treatment, but I felt like Dorothy in The Wizard of Oz, getting to meet magical people who will help me navigate a mystifying place and find my way back home. I started out in the alternative universe of CancerLand. Now I am in SurvivorWorld.
Can you see the resemblances? No, not really.
Looking across the panel and listening to their hard-earned wisdom, I saw a number of qualities my fellow panelists had in common. First, they shared a commitment to make meaning of their suffering by doing something –– reaching out, speaking up, creating alliances, constantly learning and sharing. All of us were there because of our use of social media in dealing with cancer and survivorship. Mel Majoros has an award-winning blog and a radio show that focuses on cancer. Jody Schoger blogs, bikes, and advocates for women with cancer, working with M.D. Anderson and LiveStrong. Matthew Zachary started an organization called I’m Too Young for This that organizes and champions the underserved young adult cancer community. Joe Bacal, a professional racer, reaches out to patients and their families, giving them hope for a rich life after cancer.
While nobody sugarcoated their suffering or stifled their outrage about cancer as a disease and some of the indignities of treatment, they all manage to stay positive about life, whether through humor, doing what they love in the world, being with the people they care for most. There was a spirit of adventure and determination they shared.
Survivorship is a relatively new phenomenon. In the 1930s, fewer than 1 in 5 people survived a cancer diagnosis. In the 1940s, those numbers improved to 1 in 4. As recently as the 1960s, survivorship rates were only 1 and 3. Today it is about 1 in 2.
We don’t have a lot of role models. We can’t all be Lance Armstrong. Besides, every survivor has different issues that they face. As I said during the round table, we are more biologically similar than psychologically and socially similar. Treatment, if we are fortunate, has a timetable and an end. There are known pitfalls and ways of coping. Survivorship is much more varied and uncertain.
Undoubtedly, it is a blessing to have the chance to walk in SurvivorWorld. But along with the beautiful emerald castles and small people bearing lollipops, there are dark forests watched over by wicked witches and flying monkeys.
It really helps to have some good pals at your side. And for having a chance to meet a few, I am grateful.
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