One in Three Million: Putting a Face to National Epilepsy Awareness Month
My cousin Emma is fifteen. Her chic, cropped hair, a la Jean Seburg in Breathless, makes her look older than most her age. Life experience has certainly made her wiser. Three months ago, she cut her long golden locks, shaved her head and underwent a temporal lobe resection in hopes of bringing an end to the seizures that have been part of her life for as long as she can remember.
About 3 million people in the US have epilepsy caused by over 40 different syndromes. It's a fact: one in 10 Americans will have a seizure in their lifetime. For Emma, Epilepsy Awareness isn't an event in November: it's a way of life.
Although she wasn't diagnosed with complex partial seizures until she was six, Emma can't remember a time without them. As serious as it was, Derrick and Kerry raised Emma to live with epilepsy rather than let it define her.
"I still did everything and tried to ignore them," was her philosophy about the seizures. But as she got older, they became harder to ignore. By the time of her surgery, she often had them daily. (She's quick to remind me that she's lucky. That some people have more than one a day. Em, you have no idea how brave you are.)
Over 30 percent of people don't respond to treatment and of those only some are eligible for surgery. Last spring, a neurologist was able to monitor Emma mid-seizure and identify her as a viable candidate. Such surgery is complex. There's the possibility that once inside the brain, the affected areas are too dangerous to remove. It was a monumental decision for her family, but it offered Emma the greatest chance for a healthy future.
Preparing for this journey, they decided to embrace social media - getting through the days one status update at a time. On Tuesday, July 12, I received a Facebook invite to join a group that would grow to include many family and friends and act as a connection between Emma's Houston hospital suite and the rest of the world.
I received a crash course in neurosurgery. Kerry posted the lowdown:
[First] they do a craniotomy…place 100+ electrodes directly on her brain. They will close her up... She will then be transferred to the EMU (Epilepsy Monitoring Unit). They want her to start having seizures so they can pinpoint the exact location they originate. Once she has her seizures, she will go back into surgery. They will remove the electrodes and "resect" (remove) the part of her brain causing seizures. Then ICU and EMU. Minimum of 2 weeks all together.
From my home in Los Angeles, I was on Facebook-watch as the first surgery occurred seven days later. Then we waited for seizures. But they did not come. The wall on Emma's Facebook page filled with prayers and wishes for seizures, like some sort of rain dance to the epilepsy gods. It worked.
Two and a half weeks later, the neurosurgeons performed the resection. Incredibly, the areas of her brain effected were least likely to cause damage if removed. One week later, Emma was home with her parents and brother.
"I recovered way faster than I expected. I thought I'd be struggling [but] nothing is really major," she says. Emma attends school half-day, but she's keeping up with schoolwork and hopes to return to volleyball in January. She also plans to do something that before surgery she never dreamed possible: learn to drive.
Her volleyball team, the Unicorns, raised over $3200 for The Epilepsy Foundation selling "Unicorns Fighting Epilepsy" tees. When they presented their check to the foundation, the high school gym was a sea of purple. Purple for epilepsy awareness. Purple for Emma.
Today, Emma's busy with AP English homework, her new bunny and her burgeoning tie dyed tee business. Last weekend, almost three months to the day she came home, she walked a 5K for The Epilepsy Foundation. Seizure free.
Over seventy days post-op, Emma has not had a single seizure. Auras, yes. But seizures? Not one.
As she continues to heal, the Facebook group and friends have been vital.
"How supportive people have been, all the people coming and visiting, [it's] one of the main things that brought me through it," she says. Emma is passionate about advocating for epilepsy awareness, too. "A lot of people just think I shake or something. There are a lot of different types of seizures and it has to do with what happens in your brain -- it's not just physical. I would love to become a neurologist, more specifically neuroscientist, because I have personal experience with the brain, and I hope to research and find cures for mental disorders."
If anyone can do it, Em, you can.
The Epilepsy Foundation has created a site for National Epilepsy Awareness Month called GET SEIZURE SMART. Visit the site to learn about education, advocacy and support.