When Eliza felt like it was time to do her part to raise awareness for epilepsy, she took matters into her own hands.
As a recent high school graduate, Eliza took a year off before starting college so that she may have epilepsy surgery. During her free time in a year otherwise filled with tests, hospital stays, and escalating anxiety, Eliza made a plethora of purple ribbons and informational flyers filled with facts and statistics about epilepsy.
“Wear this for me,” she asked, as she handed the ribbons out to friends and family members, then as she distributed them to local stores and businesses. When Eliza’s friend, Julianna (see “Julianna and the Full-Circle Journey” for Julianna’s story) announced that she was going to study in Ecuador, Julianna took the purple ribbons with her to Ecuador as well.
Even after surgery was complete and Eliza started college at Hampshire College, Eliza continued her purple ribbon campaign. During a final project relating to epilepsy for her arts education class, she handed out more purple ribbons and statistics about epilepsy to her classmates. Now, Eliza reports that she sees a rainbow of purple ribbons on student’s backpacks at school, on neighbor’s coats at home in Vermont, and she dreams of them in homes in Ecuador. It seems that small amount of purple satin can be enough to raise awareness over thousands of miles.
Although Eliza has had epilepsy since she was three years old, it wasn’t until recently that she was willing to talk about her seizures. For most of Eliza’s formative years, she was embarrassed by her recurrent grand mal seizures and she tried as hard as she could to pretend that they weren’t there. Even when Eliza had a generalized seizure in school and the other children were curious, she would shy away from discussing the event and move on to other things as quickly as possible. Eliza’s parents responded by making sure they raised their daughter without allowing the fear of epilepsy lead to limitations. Although seizures were a constant threat, Eliza knew the normal childhood joys of being able to swim, ride a bike, play soccer, and hang out with friends.
Looking back, Eliza credits her parents as much of the reason why she has been able to function so well in life despite her epilepsy. “My parents never treated me differently nor implied that I couldn’t do something because I had seizures,” she remembers. “Epilepsy was never part of the conversation. They considered it a lot, but they did a really good job making me feel normal.”
Eliza’s neurologist is also part of why she has been able to do so well. “She recognizes who I am and has always treated me as a whole person, not just a person who has seizures.” For Eliza, the combination of a supportive family and an understanding doctor has made it much easier to get through the challenges of growing up with epilepsy.
The last seizure Eliza had at school happened when she was in sixth grade, then her seizures started to occur only as she was waking up in the morning. Eliza was forced to miss school secondary to seizures but her illness was no longer as visible to her classmates as it had been before. Eliza remained very quiet about her epilepsy for fear of others judging her until she was a sophomore in high school and when she began to consider moving away for college.
“Suddenly the gravity of moving away from home hit me,” she explained. “What if I had a seizure in my dorm as I was waking up and there was no one there to help me? What if I had a seizure when I was walking alone on campus?” Eliza realized it was time to make a change. Antiepilepsy drugs had never completely controlled her seizures and had led to some challenging side-effects. Eliza knew that her options for better seizure control were a trial of a low-glycemic diet, placement of a vagal nerve stimulator, or epilepsy surgery to remove the seizure focus in her brain.
Eliza applied to college with her peers and got into Hampshire College – her top choice of schools. Although she was excited and eager to move on to her next phase in life, Eliza deferred her freshman year on the last day possible for deferral. It was clear to her that she should have epilepsy surgery to try to find a cure for her seizures during her year off from school.
As Eliza came to grips with her epilepsy and learned to accept the uncertainty in her life as she grew, she also gradually became more comfortable talking about her seizures with others. When she was 16, she started by painting a picture for the Expressions of Courage art contest for the Epilepsy Foundation. When her drawing of an earth and the word “hope” written in multiple languages was chosen for the November page in the Expressions of Courage calendar, Eliza had a tool to gradually step out and speak to others about her epilepsy. Eliza remembers a teacher from high school as one of the first and most supportive people she spoke openly with about her epilepsy and the possibility of epilepsy surgery. And once she made the decision about surgery, she began distributing purple ribbons. “I went from being embarrassed and afraid to share to a complete reversal,” Eliza remembers.
Eliza had epilepsy surgery on March 29, 2011. Since her surgery, she has been seizure-free and now has been weaned off half of her antiepilepsy medication. Her neurologist has plans to eventually wean her off all of her medication if she continues to remain seizure-free. When I asked Eliza how it feels to be off some of her medications, her response was simple.
“It’s almost overwhelming at times.”
She’s excited for the possibility to be off medication but nervous at the same time.
Eliza is back at school and studying chronic illness and foreign languages. She states, “I hope to use my experience with epilepsy to make other’s experience with chronic illness more positive.”
At the end of our conversation, Eliza left me with one last beautiful image.
“Last year at the end of March, one year after my epilepsy surgery, my friend Julianna, my mom, and I went to the Epilepsy Walk in Washington D. C. I’ve never felt so not alone. There were literally thousands of people there and all the people with epilepsy were wearing purple T-shirts and all the people that were friends, family members or supporters wore white T-shirts. It was amazing and uplifting to walk amongst a sea of purple T-shirts and to realize how prevalent epilepsy is.”
Eliza is not alone. We are not alone. Please pass it on.