“If I’m in this club, I might as well be president.”
That’s what Erin Grasty, a sophomore at the College of Mount St. Joseph, living with epilepsy, says of the condition.
Grasty has never been one to ask, “Why me?” She has always been a fighter, ever since the day that changed her life.
Just before her 10th birthday Grasty had her first seizure outbreak, the most noticeable symptom of epilepsy. She was enjoying herself just as any other elementary student would on a night of a winter carnival.
She and her best friend, Katie, decided to get their nails done. Having the bubbly personality she has always had, Grasty obviously chose bright colored pinks, but something was different.
Her hands started shaking. Not wanting attention drawn to her, she quickly sat on her hands, but soon enough it escalated to the point where she eventually fell out of her chair because of her disposition.
She had no idea what was going on. Katie ran to grab someone.
“I told the teachers that I was fine. I told them that it happened all the time,” chuckles Grasty, knowing her little fib.
Little did they know this would be the start of many seizures to come.
And then the countless visits to the hospital started. The doctors first diagnosed her with ocular migraines, but she had another seizure a few days after. That was when she was diagnosed with epilepsy.
“I thought I was going to die at the time,” says Grasty nostalgically.
As soon as she was diagnosed, the doctors went straight to EEG, electroencephalograph, tests, and to everyone’s surprise (even the neurologist’s) her brain activity was inexplicably off the charts. She spent many days and nights at the hospital, having seizures every few days, losing five to six hours at a time, and waking up disoriented and confused.
This was not the life meant for a bubbly, hyper 10-year-old. This was not the life for any child, but somehow Erin pulled through, still smiling, and nine medications later, she found one that seemed to make her seizures not as frequent.
And now here she is, going to college, getting her degree in special education, helping everyone around her, and enjoying life every single second at a time, and no one would guess she had been through so much.
I wanted to see what Grasty’s peers’ thought of her, so I went back to the students at her high school.
“Epilepsy? I didn’t even know she had epilepsy,” says one of Grasty’s former high school classmates.
That’s the thing about Grasty. No one would ever know that she has epilepsy because of the way she lives her life. She doesn’t let it affect her daily schedule or routine.
“I am not Erin the Epileptic. I am Erin with the big heart who says really funny, dumb jokes. I’m not Erin the weird girl with seizures. That’s such a small part of me,” she says.
She claims to be an ordinary teenager, but she is more than that. She goes above and beyond the average teen.
Erin has been going to Camp Flame Catcher, a camp for children with epilepsy, ever since she was diagnosed. She started helping as a camp counselor when she was 14 years old. Besides helping children at Camp Flame Catcher, she also volunteers at her local church and helps kids with mental disabilities.
Helping is her passion, and she wants to spread the word about those with physical or mental conditions.
Grasty wants to emphasize epilepsy is not a hindrance. It does not change who a person is or define who they are.
“Labels are for soup, not for people,” she says.
Epilepsy is simply a mental condition with the brain, not who a person is. People constantly ask Erin questions, which she is not bothered by, unless they are offensive.
One of Grasty’s supposed friends asked her, “How do you make s’mores?”
He was hinting at the fact that people with epilepsy can’t be around fires or bright lights.
The simple fact of the matter is that people are not educated enough on epilepsy; it is a very common disease. According to the Epilepsy Foundation, over 3 million people in the U.S. are living with epilepsy.
Grasty is breaking down the stereotypes that people with epilepsy are held against every day.
Throughout high school she took many honors classes, was a part of a theatre group, went to rock concerts, did things that any other high school student would participate in, and did even a little more with her active help in camps and church.
And despite all the hospital visits, EEG scans, and insensitive comments and teasing, here she stands, stronger than ever. She doesn’t take life for granted and lives each day with courage.
I asked her how she stays positive and how she learns to ignore demeaning people and still maintain her happiness throughout all the negatives pushing her back.
Grasty explained that throughout the hours, even days, in the hospital, that she doesn’t see it as time lost. She doesn’t see it as a step backwards; rather, she sees it as a step forward in her life.
She has received many opportunities throughout all the hardship she has endured. It has made her family stronger. She won an essay contest in Washington D.C. She also addressed Congressman Steve Chabot of the importance of epilepsy awareness through a “Dear Congressman” letter, and he signed it immediately. Her sister got an internship at Washington D.C. in part because of Grasty’s connections with her success at the writing contest and with the Congressman.
Grasty marched in one of the Cincinnati Reds’ Parades and even met Thom Brennaman, sports broadcaster of the Reds. She met all of the football players on the Cincinnati Bengals NFL team. When she was just 13 she spoke at the Mardi Gras Gala Epilepsy Foundation of Greater Cincinnati and Columbus.
Most importantly, what has come out of this battle are the people that give her hope, and those are her kids from Camp Flame Catcher.
“Some of these kids have it infinitely worse than I do, and to see them come together and care for each other is just amazing.”
November 3 would have marked a very important date for Grasty. She would have been 4 years seizure free, but in spring of last year, she had a seizure.
“Yeah, I would’ve loved to celebrate 4 years of being seizure free, but you know what? You can’t live in the past. I can celebrate 4 months seizure free, and eventually 4 years. It’s all about marking things,” she says.
Grasty is not an epileptic. She is a daughter, a sister, a friend, a girlfriend, a mentor, and much more. She is a person fighting every day. She is a survivor, and she will continue to change lives.
Facts about epilepsy
- Epilepsy is a condition that causes 2 or more seizures that have not been provoked by specific events such as trauma, infection, fever, or chemical change.
- 1 in 26 Americans have epilepsy
- The leading non-medical problems people with epilepsy face are discrimination in education, employment, and social acceptance.
- EEG tests provide ongoing electrical activity in the brain.
- The motto of The Epilepsy Foundation is “Seize Hope,” and the supporting color is purple.
*Sources: CUREepilepsy.org and The Epilepsy Foundation.