December 8th, 2010
At the Life Beyond Cancer retreat, I got a peek at what cancer and survivorship were like before the age of activism, blogs, and social networking. Kathy LaTour, editor of CURE magazine, had us roaring with her tales of treatment in the pre-pink ribbon era, before the rough edges of chemotherapy were softened by modern anti-nausea drugs like Zofran. She talked candidly about the indignities endured in a time when insurance companies didn’t know if they should cover wigs, about her ballsy confrontations with the insipidly bureaucratic receptionist about the need for such coverage.
That’s right. She had us laughing our asses off. About cancer.
It was laughter of recognition. A room full of survivors laughed because we knew. It was laughter of belonging. Her stories affirmed our own surreal experiences in the strange, alternative universe of cancer treatment.
During the retreat, we got that message over and over again. Brené Brown praised the strength of our vulnerability and the importance of our stories. Heidi Adams of Planet Cancer assured us that bearing witness to what we experience is, in itself, a form of activism. It paves the way for those who come after us, shining a light on this treacherous path we walk on.
And, indeed, I found that to be the case. Every woman I met who honestly told her story gave me a gift. The woman who had my same diagnosis who could not tolerate the chemo drugs and had to stop her treatment gave me a profound sense of gratitude for my own clinical response. The women living with metastatic disease helped me face my fears and recognize that I would not cease to be myself should that become my fate. The women who managed to work through their treatments or who made profound life changes in the face of their own mortality inspired me with their tenacity and courage.
We survivors need each other. We live in an emotional reality that might be conceptualized but not fully understood by others who are outside of our experience, no matter how much they love us. It is often a lonely place.
This week, when Elizabeth Edwards’ announced her decision to stop treatment, it felt like a punch in the gut to me. She was the public face of metastatic breast cancer, a disease that belies the typical narrative of the noble sister bucking up for a cure.
Soon Edwards’ news spread like an electric current throughout my networks.
The next day, we learned that she had died.
Edwards’ story had different resonances for each of us, playing off of different notes of sadness and loss. With the first news, I kept imagining her family’s grief, remembering the awful mixture of relief and sorrow when we came to terms with my brother’s need to end treatment. Others who lost loved ones felt their own painful memories resurface.
When we learned of her death, we were struck again, and our mutual support continued. Mothers with cancer felt the unspeakable despair for the young Edwards children left behind. Those of us who struggle with the raw deal we have been handed with this disease remembered her courage and resilience. Her death became a focal point for my blogging friends, as people expressed the wide range of emotions that her death had left us with.
Just as so many of us only know each other through the words we share in our blogs or on Twitter, we knew Elizabeth through her words. And, as our words connect us to each other in this strange and lonely world, many of us felt that connection to her, another accidental tourist in Cancerland.
How peculiar to have the wind knocked out of me because a stranger has died. This is new emotional terrain for me. I didn’t cry when Princess Diana died. I don’t feel fazed by celebrity deaths in general.
And yet it makes perfect sense. There was catharsis in laughing with my fellow survivors at Kathy LaTour’s cancer comedy shtick. And there is catharsis in crying together now over losing one of our own.
Elizabeth Edwards had this to say about facing the strange world we enter into with a cancer diagnosis:
Resilience is accepting your new reality, even if it’s less good than the one you had before. You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try to put together something that’s good.
I am so glad I am not in this less good place alone. You help me to be resilient. Thank you for your company.
This entry was posted on Wednesday, December 8th, 2010 at 9:29 pm and is filed under Survivorship. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.