by Sue Ann Rybak
Judith Levin, of Mt. Airy, 47, is on a personal mission to raise awareness about epilepsy, a chronic neurological condition characterized by recurrent seizures, and dispel the myths and stigma associated with the disorder. She wants everyone to know November is National Epilepsy Awareness Month.
Levin explained that a seizure happens when abnormal electrical activity in the brain causes an involuntary change in body movement or function, sensation, awareness or behavior. She said seizures can vary from a momentary disruption of the senses to short periods of unconsciousness or staring spells to convulsions.
According to the Epilepsy Foundation, one in 26 people will have a seizure at some point in their life. Epilepsy affects an estimated 2.3 million Americans, and, of those, 1/3 live with uncontrolled seizures because no medication or surgery will work for them.
“As a person with TBI, epilepsy and brain surgery, I want to help others with this disorder by opening doors that would educate the public about our plight,” she said.
Levin was just 19 years old when her life was changed forever.
“In 1987, I was pulling off a side street one day near the Willow Grove Mall, when someone ran a red light and plowed into me,” she said. “I didn’t know what happened.”
Even now, her memories of when and where the accident occurred are foggy. She recalled waking up in the hospital to find her parents standing next to her.
“When I became conscious again, they sent me home like it was nothing, because back in those days they didn’t know that much about the brain,” Levin said. “Who knows? If they would have given me anticonvulsants then, I might not have ended up with a traumatic brain injury.”
After the accident, Levin said, “I knew something wasn’t right.”
“I would have memory blanks here and there,” she added. “I started taking myself to a chiropractor for severe head, neck, and back pain.”
But life went on
In 1989, Levin graduated from The Art Institute of Philadelphia with an associate degree in Fashion Merchandising.
“The day after I turned 24 years old, I got married,” she said. “My future was bright. I didn’t know that four months later my husband would be taking me to the emergency room because I had a seizure.”
Doctors diagnosed Levin with adult-onset epilepsy. She said, after that, her life turned upside down.
“My husband left me,” said Levin, who has complex-partial seizures, generalized tonic-clonic and partial seizures.
According to the Epilepsy Foundation of Southeastern Pennsylvania’s website:
“Complex partial seizures or psychomotor seizures are called ‘complex’ because they impair consciousness and ‘partial’ because they begin in a limited area of the brain. Most complex-partial seizures are associated with some automatic behaviors, termed automatisms. During a complex partial seizure, the person usually becomes motionless and stares or makes automatic movements such as fumbling movements of the hands, lip smacking, screaming, kicking, ripping up papers, and disrobing.”
The website also explains what happens during a generalized tonic-clonic seizures:
“During the tonic phase, breathing may decrease or cease altogether, producing cyanosis (turning blue) of the lips, nail beds, and face. Breathing typically returns during the clonic (jerking) phase, but it may be irregular. This clonic phase usually lasts less than a minute.
“Some people experience only the tonic, or stiffening phase of the seizure; others exhibit only the clonic or jerking movements; still others may have a tonic-clonic-tonic pattern.”
Levin said many of her close friends and even some family members abandoned her because they were embarrassed by her seizures.
“When I was first told I had epilepsy, the first words out of my mouth were, ‘I’ll never be ashamed or embarrassed because I didn’t ask for it,’” she said.
Voice for epilepsy
Levin said in 1992, she scoured every library and bookstore for any information about epilepsy or clinical studies. She said the bulk of information about epilepsy available then pertained to children or seniors with epilepsy, and almost all clinical trials at the time focused on the treatment of grand mal seizures.
“The Epilepsy Foundation at the time was basically geared towards children and their summer camp,” she said. “The American Disabilities Act had just gotten signed and it was just getting started.”
Levin said despite applying for thousands of jobs she was always turned down or let go by employers when they discovered she had epilepsy.
“Nobody would hire me because they thought I was a liability,” she said. “So, it became my job to be a full-time advocate. Unfortunately, the pay is lousy.”
Despite trying various medications to control her epilepsy, Levin was still having uncontrollable seizures that caused her to have severe memory problems and made it difficult for her to process information.
“From the day I was diagnosed, I have been driven to help open the windows and doors for a clear view of the truth,” she said. “But, it’s not easy being an advocate, because you make yourself vulnerable. You are constantly being direct, open and honest, and people either love you or hate you.”
Lightning strikes twice
In 2008, Levin had to have brain surgery to save her life from a broken blood vessel in a non-cancerous tumor.
“I was terrified because they (the surgeons) didn’t know if they could do the surgery or not,” Levin said.
“After the surgery I couldn’t remember a thing” It was like my brain had a stroke.”
She said she couldn’t even read a sentence in a child’s book.
“It was during those darkest years when I could not talk, make sentences or even remember my own name that my creativity was the one constant in my life,” she said. “Creating art has been a God given gift, all my life, beginning when I was very young. When I was very young, my family and friends used to say ‘I had judieyes because I saw everything.’”
Without her art, she doesn’t know how she would have survived all those years.
“I want to share this self taught art… art therapy that helped save me when I felt totally alone,” said Levin, whose work has appeared in several books including “Expressions of Courage: Art by People with Epilepsy.”
“Judieyes, the signature name for all of my creative artwork, is not to be looked at with our natural eyes, but the creative and spiritual eyes within you, me, and everyone else you know,” she explained.
Levin said while sometimes it is difficult for her to verbally express how she feels or what thoughts she wants to convey, her “art does it all.”
“My creativity continues to pour out through my poetry, collages, paintings, sculptures and handmade jewelry,” Levin said. “All I have done and continue to do is a reflection of my emotional and intellectual visions. It’s all God talking to me, letting me know I am doing it – and don’t stop. I am living proof that nothing can stop you unless you let it.”
But more research and education is needed.
“Epilepsy is one of the oldest chronic illnesses in recorded human history,” Levin said. “And yet few illnesses have been as plagued with stigmatizing myths as much as epilepsy.”
Even the name of the disorder, epilepsy comes from a Greek word meaning “possession.” In ancient times, many people used to believe that seizures were caused by demons.
One of the most common myths about epilepsy is that you should put something in someone’s mouth if they are having a seizure to stop them from swallowing their tongue. (It’s physically impossible to swallow your tongue.) You should NEVER put anything in the mouth of someone having a seizure. Instead, you should turn the person gently onto one side to help keep the airway clear. Prevent injury by clearing the area around the person of anything hard or sharp.
Sue Livingston, education coordinator at the Epilepsy Foundation of Eastern Pennsylvania, said one of the challenges of raising awareness is the fact that there are over 40 different types of seizures. She noted that seizures, are generally divided into two categories: generalized seizures, which occur in the whole brain or partial, which occur in only one area of the brain.
Livingston added that many medical professionals and parents of children with epilepsy are reluctant to use the word epilepsy because of the negative connotations associated with the disorder.
“We get a lot of people who will call the office and say ‘I don’t know if I am calling the right place because I don’t have epilepsy. I have a seizure disorder,’” she said.
Marikate Taylor, information and communication coordinator at the Epilepsy Foundation of Eastern Pennsylvania, said one of the reasons people who have epilepsy are afraid to acknowledge they have the disorder is because people automatically assume the worst.
“One of the areas that the foundation is trying to focus on is encouraging medical professionals to use the term epilepsy,” she said. “I think doctors are afraid to use the term epilepsy because they don’t want to scare parents and patients right off the bat.”
Taylor said often, parents won’t use the term with their children.
“Parents will tell their children that ‘they had a little brain freeze or a little brain storm,’” she said.
Livingston added that although the Americans with Disabilities Act states that employers must make reasonable accommodations for people with disabilities – companies don’t always adhere to the law.
She said many people with epilepsy are not aware of their rights.
Livingston said that’s why it’s so vital that people “Speak Out for Epilepsy.”
But, it was Levin’s words that reverberated in my mind.
“Silence heals nothing and helps nothing. It’s the squeaky wheel that gets oiled and the oiling is long overdue for epilepsy research and awareness.”
She said it’s just another reason why we can’t afford to lose another moment to seizures. Levin celebrated her birthday on Nov. 2 and all she wants for her birthday is for people to seize this opportunity to learn more about epilepsy by going to www.efepa.org.
Updated: An earlier version of this article erroneously stated Levin had brain surgery in 2007. It should have said 2008.