Epilepsy: The unpredictable thief of control

Enrollment Services Assistant JenVon Anjery Cherry. Photo by Jade Johnson | The Signal

A six-year-old girl goes to school one day, thinking it was going to be the same as the last day and the day before that. However, young JenVon Anjery Cherry didn’t know that this day was going to drastically alter the rest of her life forever.

The event that happened that day impacted her in unimaginable ways, and through endless battles, heartache and ultimate acceptance, Cherry has chosen to finally share her story with The Signal.

How it began

“I lived in D.C. and a classmate actually stabbed me in the eye with a pencil, and the pencil lead lodged itself in my left eye and the lead hit a nerve, and from there I was diagnosed with epilepsy. It was due to the trauma,” Cherry said.

Following this traumatic experience that happened to Cherry in class, the doctors were able to remove the pencil lead, but there was still a fracture to the brain that was causing swelling. Hesitant because of her age, Cherry’s parents decided to decline anymore surgery and Cherry later went home to begin living with this condition.

So what is epilepsy? Epilepsy is a chronic disorder in which recurrent, unprovoked seizures occur. Many people with epilepsy experience more than one type of seizure and may have other symptoms of neurological problems as well, according to epilepsy.com.

I have Petit Mal seizures, and usually more Absent Mal seizures. I usually don’t know when I’m about to have a seizure, they usually just come,” Cherry said. “I call the ‘bossy,’ because they have more of an attitude and come whenever they want to. What happens during a seizure can be different. Most of the time I have seizures in my sleep, but sometimes I can have a staring seizure, where I’m not really blinking, I’m just in a daze looking at something and I stop talking. I can have a seizure where I start jumping up and down, and not really paying attention to anything.”

Having had this distressing event happen to her at a young age, the thought of it resulting into something that potentially affected her life for the long-run was a difficult realization to comprehend, for Cherry and her parents.

“In the ‘80s no one really knew much about epilepsy, so I was in the hospital for three months, almost four,” Cherry said. “I had all my hair shaved off and I had multiple seizures every single day. My mom quit her job because I was in the hospital for so long. But just imagine being six years old, in the hospital and having testing done with needles, and I was being put to sleep for all the types of tests. It wasn’t a good experience for me, I can only imagine how my mom and my dad felt watching me go through that.”

Cherry is 34 now, and is currently the Enrollment Service Assistant Sr. at Georgia State University. She has come a long way since that fateful struggle so many years ago, but her mind didn’t reach a point of ease effortlessly. For Cherry to obtain the acceptance and contentedness she feels today, she had to endure 24 years of pain, humiliation and theological catechism.

A true coming of age story

When being diagnosed with epilepsy, Cherry had to drastically change her routines and comforts to accommodate this new hurdle.

“I definitely had to start watching things that I eat, just because I take so much medicine,” Cherry said. “Even though I don’t know if it works, because I still have seizures, I still try to watch what I eat. I try to exercise, drink a lot of water and I try to get a lot of sleep. Because I know that can fluctuate, and I can have a seizure if I don’t get enough sleep or drink a lot of water. Stress is definitely a main reason, about 90 percent of people who are stressed have seizures [according to Cherry]. I know with me, if I’m stressed out, I will definitely have a seizure.”

Aside from altering routines, Cherry had to also face the aspects of being a teenager. Growing up during one’s teenage years is hard enough, it consists of constantly questions oneself, boys and girls, school and their parents. However, Cherry had to add one more obstacle on that list for herself, questioning the arrival of a seizure.

In high school it was hard for me, I didn’t like to tell people I had epilepsy or seizures. I felt like people didn’t want to be my friend if people knew I had seizures. I didn’t like to tell my friends everything I was going through, I kept a lot to myself. I had a huge seizure during my junior and senior prom. It was horrible, but I think to actually see my friends be there was nice. But for me it’s very vulnerable for someone to see me in that state, so it was very hard for me to go four years in high school and not let anyone know the things I was going through personally and on a regular basis. But I did my best to try and keep a good social life, I cheered at school,” Cherry said.

These occurrences, unfortunately, did not fade when Cherry entered college. The experiences she went through then was more a realization of how ignorant and harsh people can be toward someone who was different, it was a bitter pill to swallow.

“I remember in my freshman year of college I had to tell my roommate that I had epilepsy, and what to do and what not to do,” Cherry said. “But I didn’t know that she went to go tell the dorm director because she felt like me having epilepsy was something that she can get. I think the worst part was that we had a dorm meeting with 800 girls that stayed in that dorm about me having epilepsy, and how it wasn’t transferable, like a cold. That was the most embarrassing part of my freshman year.”

Cherry felt the urge to transfer schools at that moment, but she held her head high and understood that she couldn’t alter another’s way of thinking at the time, but she could eventually try. This mentality helped her devote her time to epilepsy organizations that would help her learn more about her condition, and help those that are dealing with the same battle.

One in the same

Cherry lived in Charleston, S.C. and decided to take part in the South Carolina Advocates for Epilepsy.

“On Christmas we would volunteer and give other people who have epilepsy some sessions, where doctors would come in and tell us new things,” Cherry said. “Things that we didn’t know about. I like doing things like that because I always want to keep myself up to date and informed.”

It was through volunteering, at 30 years old, that Cherry finally found peace with her condition. After spending time volunteering, she met a woman that not only knew what she was dealing with, but also gave Cherry the help to reaffirm her beliefs and strength.

Because [I was] constantly getting sick and being taken to the hospital and taking so much medicine, it’s almost like ‘why did God have to give me this cross to bear?’ But when I turned 30 I met this lady who was volunteering, her name was April. I told her exactly how I was feeling, how I never felt okay with myself having epilepsy and seizures. She told me then that ‘you have to feel okay with yourself, this is something that may not go away and you have to be confident, and whomever doesn’t want to be in your life, doesn’t have to be in your life. If God gave you this cross to bear, you bear it and you speak about it, and you take it with pride.’”

When Cherry gained this perspective, she became more aware of other aspects she wanted to confront and change for the better, like the dynamic of the African American community and the knowledge of health revolving epilepsy.

“I chose to tell my story because the African American community can sometimes be a little shunned about illness that definitely is in the African American community, but they just don’t want to talk about it,” Cherry said. “When I tell a crew of African Americans you have epilepsy, they go ‘okay.’ What else can you talk about when they don’t know much about it? But if I were to talk about it with ten other white people, they would be very intrigued and want to know. I’ve never understood why African Americans are so shunned to not knowing facts, because sudden unexpected death happens with African Americans. Normally, we are the ones who die from having a seizure in our sleep or die from having a seizure, period. Me being a black person, I wanted to speak and tell my story and make others aware that this is a real thing that goes on.”

Cherry will never stop having to face obstacles in her path, especially with Trump’s potential repeal for ObamaCare affecting millions of people’s healthcare and also some additional testing Cherry is planning for the summer of 2017. However, these upcoming milestones are just a few more Cherry is ready to take on.

“I just want people to know that my journey has been hard, but where I’m at in life, I’m at peace,” Cherry said. “I’m happy, and I believe everyone has a journey in life and a story. This is mine and I’m just trying to share it.”

A quick lesson: Epilepsy myths

  • One can swallow their own tongue during a seizure: This is impossible.
  • Force something into the mouth of someone having a seizure: Don’t do this! It runs the risk of hurting someone’s jaw, teeth or puncturing the gums. Roll them on the side and put something soft under their head.
  • Epilepsy is contagious: This just can’t happen. Ever.
  • Only kids get epilepsy: This condition can happen to people over 65, just as much as children.
  • People with epilepsy are disabled or unable to work: People with epilepsy can do anything that someone without it can, their range of ability and intelligence does not shift from the rest of us.
  • With today’s science, epilepsy is a solved problem: Although there is treatment that works for several people and can be successful, some still don’t respond to this treatment. There still needs to be more research done, to help with this go to epilepsy.com.


1 Comment

  1. As a longtime friend of JenVon, I have witnessed the strength and grace with which she handles living with epilepsy, despite its impact on her life. I am consistently fascinated by her ability to take her challenges in stride while remaining optimistic and cheerful. I am proud to have known her for more than a decade and am blessed to regard her as one of my best friends. She is an amazing woman with an amazing spirit and her story deserves to be heard.

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