Brain Tumors: Inspiration Behind Organizing

 Danielle and Caroline in 2014

Danielle and Caroline in 2014

May is Brain Tumor Awareness Month. I am sad to share that brain tumors in our community are way too common. They struck close to home for me, impacting people I dearly love. Brain tumors are the reason The Lilies Project exists. 

I have shared widely the story of how my friend Danielle’s diagnosis of a brain tumor led me to create Gray Matter, a sculptural book, during which I struggled with my faith and disbelief that she was going to be okay. Danielle’s second craniotomy was in August 2010. Years later, I realized this questioning was what led me to my coal ash advocacy work. 

After moving back to North Carolina in 2012, we learned my cousin Rick had a brain tumor. 

It did not take me as long to connect the dots with how we actually got organized at Belews Creek. I took a two-year hiatus from coal ash after Obama failed to classify coal ash as a hazardous material in November 2010. Instead I focused on building a playground in Downtown DC. When Rick fell in October 2012, I knew exactly what to do -- reach out to our local experts.

I contacted Dr. Avner Vengosh, a leading researcher on coal ash at Duke University. His paper at the time confirmed my suspicions that coal ash processed by the new scrubbers at Belews Creek Power Station resulted in higher concentrations of heavy metals and toxins in the local community. He put me in touch with Earthjustice. Lisa Evans then put me in touch with Appalachian Voices. And from there, we began organizing a full year before the Dan River Spill. Residents for Coal Ash Cleanup at Belews Creek. A couple of years later the statewide group Alliance of Carolinians Together Against Coal Ash launched at Belews Creek, as well.

Needless to say, Rick’s brain tumor has been devastating on our family. But we are so grateful that his tumor is stable for five years now. Rick leads a full, healthy life, which includes returning to work full-time, long-distance running, bike races, and playing with his granddaughter, Ila. 

  Danielle is missing a portion of her skull, even though she is cancer free. She is concerned about the risks associated with an additional surgery necessary to replace the bone, which is being stored.   Photo Credit: Facing South, At What Cost Video

Danielle is missing a portion of her skull, even though she is cancer free. She is concerned about the risks associated with an additional surgery necessary to replace the bone, which is being stored. Photo Credit: Facing South, At What Cost Video

In communities impacted by coal ash, there is no silver bullet to prove the elevated health concerns. Perhaps there’s a reason for that. But intertwined with the heart breaks and fears are hope and miracles. Danielle is cancer free. My prayer is to one day say the same for Rick.