March 22, 2016
About four years ago, Jennifer Pownall's body started to attack itself. The Northeast Philadelphia woman was overcome with bizarre and excruciating symptoms, like pains that shot through her head, ears, teeth and nose. Out of nowhere, she would get terrible cramps or charley horses. Sometimes she felt like she was being burned or hit with electric shocks.
It took until December 2014 — right before Christmas — before doctors at Jefferson Hospital diagnosed the cause of these bewildering symptoms: She had three tumors in her brain, tangled in blood vessels and torturing her nervous system. It is a chronic condition called trigeminal neuralgia.
Surgery is too risky, and no medications have helped her. The condition is so painful that it has been nicknamed "the suicide disease," and Pownall has had every reason to give up hope.
Instead, she decided to deal with her disease in the silliest, most lighthearted way possible: playing air guitar.
Hoping to ride a wave of viral popularity like the one that propelled the ALS Ice Bucket Challenge in 2014, Pownall came up with the "Rock Out Brain Tumors Air Guitar Challenge." The rules are simple: Call out three friends to either show off their best air guitar moves in a video or donate money to the National Brain Tumor Society, and then have them each challenge three more friends.
"I still find it within me to smile, laugh and joke," Pownall said. "That's who I am, and I'm not letting this change me."
Pownall, 43, has rallied to create a stronger community of brain tumor patients and raise awareness for the disease. While her brain tumors are not cancerous, they are still very dangerous, and she's dismayed over the fact that the Food and Drug Administration has approved only four drugs to treat brain tumors in the past 30 years.
"You don't hear it on TV, you don't see celebrities or athletes wearing gray or doing anything for brain tumor awareness. ... We're like the redheaded stepchildren of illnesses," she said.
Gray is the color for brain tumor awareness, and she wishes that she saw that color as much as pink for breast cancer. Her big hope is that a major celebrity or athlete will do the Air Guitar Challenge and help it go viral (a hint to any athletes reading this: She's a huge Phillies and Flyers fan).
Part of the problem, she said, is that the illness is deadly but also invisible.
"You can't see these brain tumors," Pownall said. "You can't see the pain we go through."
Pownall has thrown herself into making the disease visible. She's teamed up with producers Scott Parry and Sherrod West to create a documentary called "Flashing Gray Lights," and she's been chosen by the National Brain Tumor Society to speak with policymakers in Washington, D.C., this May.
Asked what motivates her, she lists the names of little kids with brain tumors she has met from around the country: Brendan, Zach, Machiaya. She talks about mothers she's met whose babies have brain tumors.
"If I can come up with new treatment options for a baby that was diagnosed, then I did something about this diagnosis," she said. "It makes me feel like I can take control of something that totally controls me."
Pownall also wants to inspire her own son, 24-year-old Ryan Miller. He got struck in a hit-and-run crash in 2012, and he's still recovering from the traumatic brain injury he endured.
"I want to show him that you fight for what you believe in," Pownall said, "and I don't want to see him looking at a mom that's just laying around, giving in to this diagnosis."
It's unclear what her life expectancy is now; she can only "watch and wait," a term that she hates. Her own grandfather died of a brain tumor, and she remembers watching how he suffered when she was a little girl.
By devoting herself to advocacy, Pownall feels she has found meaning in her life.
"If I were to pass away tomorrow," she said, "at least I know ... I didn't suffer in silence."