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. 


Ashes to Art: The Intersection of Art & Science

This past February, UNC School of Journalism students asked if I would be willing to be part of an Environmental Journalism class project. I said yes. In fact, I had just scheduled an interview with UNC's General Alumni Association Magazine and perhaps they can work together. I love the result. It really focuses on both the art and the science, over a lot of weighty information about coal ash. I also love the spirit that it captures, including the expression on Wade Brown's face in this opening shot. I always enjoy spending time with Dr. Kunigal Shivakumar and Wade, the scientists at A&T. Periodically we ponder over how to address the burden of coal ash in North Carolina and instead use it as a raw material in a safe manner. There is typically a lot of laughter and a few grimaces. 

Although I have been a coal ash advocate for a number of years, I am not scientific in the least. For years, I had nightmares of attending my first high school chemistry class on the day of the final exam. It didn't matter that I had already graduated from college and even earned my Masters. In my dreams, I could not drop the class. The nightmare reoccurred until recently when I began meeting with scientists at NC State A&T University.

I read a newspaper article that profiled their research into developing materials out of coal ash. I was thrilled. Progress to this monumental issue facing North Carolina is being made. But I never saw another article and the notion lingered with me. Eighteen months later, I reached out to Dr. Kunigal Shivakumar. We had a large problem in the community. I wanted to know if he could help us.

Upon meeting with Dr. Shivakumar and his research partner, Wade Brown, I learned they were unaware of the health impacts on the community. When I first saw the chair rail on the office desk, I said we would need billions of miles of this material to solve this problem. But both were eager to learn how they could help. As part of a learning institution, benefiting the greater community is part of the university’s mission. Dr. Shivakumar stated, “Once you learn of the problem, you can begin to address it.”

After our meeting, several of the researchers attend a few public hearings around coal ash and heard testimony from individuals living in the community. With a better understanding of the full problem, they were able to expand their focus from small building materials to include a safer storage method. This wider thinking also led to ideas that use up the coal ash on a much larger scale, like Department of Transportation applications.

The opportunity to incorporate art into our conversations has been humorous. At times, I present my ideas with hesitation. But recently, Shivakumar's advice was encouraging and altered my creative process and thinking with what our final main piece will look like.

Art has also been an easy way to draw in more people to the advocacy conversation. We had reached a ceiling of who was attending our meetings and struggling to gain more traction in an ongoing marathon of advocacy. But through music, films, and art, we can share the heavy scientific realities of what it means to live in close proximity to coal ash without scaring anyone away. As an artist, I am the first to admit that art was the missing link from our last five years of advocacy.

In college, I took a studio art class focused on Art & The Body. Perhaps through these driven conversations and a dental school prerequisite for 3D Studio Art, I always understood the connections between art and science. Somehow seemingly on opposite ends of one spectrum, they were intertwined from another vantage points. Both start with trying to answer a question. What's your question?

A special thanks to Alex Kormann for coordinating the development of this video and coming out to interview us. 

video by Hanna Davison and Alex Kormann
timelapse footage by Alexis Fairbanks