Finding everyday Inspiration: Life with Epilepsy

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Finding everyday Inspiration: Life with Epilepsy

Amanda (center) surrounded by the nursing staff of 6700.

Amanda (center) surrounded by the nursing staff of 6700.

Amanda Filippone

Amanda (center) surrounded by the nursing staff of 6700.

Amanda Filippone

Amanda Filippone

Amanda (center) surrounded by the nursing staff of 6700.

Nadia Starbinski, Editor-in-Chief

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LIVINGSTON, N.J. – The 6700 wing of Saint Barnabas Medical Center is hidden away from the rest of the building. Rumor has it that this wing used to be the psych ward many, many years ago. Others say the reason it requires special directions to find is because there is a secret cult. Many stories have circulated — but for Amanda Filippone, 25 of Kenilworth, this place was home.

These white plastered walls and the consistent beeping sound of brain scans became her reality.

“I was young, confused, upset and scared. I didn’t know what my life was going to possibly be,” Filippone said about this period of her life. “It’s scary at a young age being diagnosed with something you know nothing about.”

For the past 17 years, Filippone has been living with this fear. Her diagnosis is epilepsy: a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain, according to NCDJ.org.

In other words, it is a scary life-threatening and uncontrollable seizure disorder.

There’s this saying, “you’re not afraid of the dark, you’re afraid of what’s in it.” You’re afraid of the unknown. You’re afraid of what happens when you aren’t prepared for it. Now imagine living every single day with this fear. It is hard to lighten the burden of the unknown—of never knowing if and when everything is going to just stop.

Filippone’s epilepsy diagnosis has revamped the entire way she lives her life. A once rambunctious child, she became a careful pre-teen whose love for soccer was threatened by constant seizures.

Hospitalization after hospitalization motivated her to use her story and struggles to help others.

Through the years, her hospital stays became more tedious. The off-white walls began to feel more black and gray, the endless scans and wires started to itch her head, and the bruises from endless prodding for blood work and IVs started to become a part of her daily routine.

Slowly the 6700 wing began to feel more like that psych ward than ever before.

Being hooked to an EEG machine, which detects abnormalities in your brain waves, or the electrical activity of your brain means very limited mobility. Factoring in the fall risk, being able to walk the halls is a limited luxury few patients have.

Filippone is only allowed to unplug from the machine for 20 minutes at a time before she has to return to her room and “charge up.”

“After all the times being hospitalized, one day I decided to walk around the floor and just look for patients that were friendly and wouldn’t seclude themselves,” said Filippone. “I introduced myself and shared my story. I want others to just know they aren’t alone and that even when they are going through a tough time and are in the hospital, you can still meet new people and make friends.”

Her fight started in disappointment, but slowly became something inspirational.

After suffering between five to eight hospital stays a year, Filippone knew she had to make the best of it. What started as a simple excuse to get out of her bed and interact with other patients slowly turned into a life-long mission. She became an advocate for people with epilepsy.

Once she entered high school, her advocacy became a full-time job. Filippone began fundraisers, developed organizations and continuously spread awareness through all avenues of her everyday life.

The Epilepsy Foundation of NJ, New Jersey Journal, Girls With Nerve and many other publications recognized Filippone and her efforts to promote her story and help others cope with their diagnosis.

“[Getting] my articles [published] about my life were like a dream come true,” she said. “I finally was able to share my life long battle and what it has been like to battle epilepsy while attending school, college and being an athlete.”

While other women her age have graduated from college, are working in their careers and enjoy a relatively normal social life, Filippone sometimes feels as though she’s missing out.

The excitement of receiving her license at 17 years old wasn’t something she was able to experience. Going out for her first legal drink at 21 wasn’t an option, either.

Even graduating from college was put on hold.

Along with promoting healthy lifestyles while battling epilepsy, Filippone’s passion was soccer. Filippone was still able to play the sport she loved, but with caution. She has experienced seizures during the game, but that hasn’t stopped her from continuing her athletic abilities to the collegiate level.

Epilepsy slowly consumed her life once again as she entered higher education due to the stresses of college life and the competitive lifestyle of her new NCAA soccer career at New Jersey City University.

Uncontrollable seizures began to get in the way of classes and attendance. Stress levels began to get in the way of assignments and anxiety slowly started to set in. Her soccer career had to be put on hold, and through advice from the neurologist, her medical absence became official.

“I had to focus on myself. If it wasn’t for my neurologist I would have failed every class,” she said.

Since taking her leave from college, Filippone has fallen deep into her advocacy. She is able to work from home as a Business Development Specialist for Sky Blue FC within the National Women’s Soccer League.

Not only has she been able to get back on track, but she has since been nine months seizure-free and is finally eligible to return to school and take her driving exam.

In addition, the medications have been reduced from 25 pills a day to 10; from multiple hospitalizations a year to quarterly neurological check-ups; from living in fear of the unknown to living her life to the fullest and making it her purpose to do the same for others.

“I believe that everyone who is suffering from this illness can be an inspiration,” she said. “The reason why I say this is because everyone’s story is different and everyone is so strong. There is inspiration behind everyone’s story.”