All these years later, it still hurts.
Adults with seizure disorders fear losing their jobs. Children with epilepsy fear losing their friends. They all fear being ridiculed.
That's what makes Netflix's depiction of seizures in its new film "The After Party" so shocking. The online streaming service's deafening silence since the movie's August 24 release has done little to quiet the controversy.
In the movie, the main character has a seizure while rapping on stage. He vomits and writhes, a moment captured on video that goes viral. He gets dubbed "Seizure Boy," and soon everyone is doing a #SEEZJAHBOY dance.
The film treats seizures like the dab
. Like the Electric Slide
The movie has outraged the epilepsy community like little else.
"The way seizures are portrayed in the film only adds to the ignorance, misunderstanding and fear that exist about seizures. This Netflix film harkens back into the Dark Ages," Phil Gattone, president of the Epilepsy Foundation, said in a written statement
Gattone said he reached out to Netflix in hopes of working with it to produce a public service announcement about seizure disorders that could be played at the end of the movie or posted on Netflix's digital outlets. He never heard back.
The Epilepsy Foundation is now planning to seek a grant to create the PSA from a fund
started by Netflix founder Reed Hastings
. Gattone said it would use "the 'seizure boy' missteps as an opportunity to empower kids with epilepsy and prevent bullying."
He called the movie a "serious affront to our community when so-called entertainment mocks or jokes about having epilepsy or seizures" -- a sentiment echoed by many advocates across social media.
"Implying that seizures are an ok thing to bully someone about is unacceptable," tweeted Kelly Cervantes, whose baby daughter has a debilitating form of epilepsy and who has become a powerful advocate for those with seizure disorders.
In a lengthy thread, Cervantes went on to say, "I can't believe I'm typing this but naming someone seizure boy or girl is unacceptable." She invited the producers and the creative team of "The After Party" to come to her home to hold her daughter "while she screams during one of her daily seizures."
"Epilepsy and seizures are no joking matter," Cervantes wrote.
Dr. M. Scott Perry, a pediatric neurologist and medical director of neurology at Cook Children's Medical Center in Fort Worth, Texas, blasted Netflix for doing "nothing more than increase the stigma for those with epilepsy, erasing all we in the epilepsy community work to alleviate each day."
"It is unfortunate in this day and age, there is still so much misunderstanding, misrepresentation, and stigma for those with epilepsy," Perry wrote in a piece distributed by his hospital
As the father of a boy with epilepsy, I watched the movie trailer and found it hard to stomach. It was made more difficult because of my son's own version of being teased as "seizure boy."
Like Cervantes tweeted, a seizure is no joke.
When I take my son to the swimming pool, I'm on edge, wondering whether Billy will seize in the water and die in my arms. On a recent beach trip, my wife decided that parasailing was worth trying, because if the worst happened, "he at least will die with a smile on his face." A fun outing at a sporting event can get upended in a second if Billy seizes amid 70,000 people.
Billy's older sister put it this way in a documentary about people with epilepsy: "Don't make fun of people for it. Just don't."
I wanted to know why Netflix thought it was OK to portray people with seizure disorders like it did, and I wanted to hear how it would respond to the controversy within the epilepsy community.
But like Gattone at the Epilepsy Foundation, I never got a response. Attempts to reach writer and director Ian Edelman also were unsuccessful.
More than 3 million Americans, including 450,000 children, have epilepsy. Many live full and productive lives, while for others, the seizure disorder is debilitating, affecting cognitive abilities and almost all aspects of their lives.
Music stars Prince and Susan Boyle had epilepsy as children, as did NFL star twins Ronde and Tiki Barber. Rapper Lil Wayne also has become an advocate in recent years talking about how he suffers from life-threatening seizures.
University of Minnesota football coach Jerry Kill had to give up his dream of coaching big-time football when his seizures could no longer be controlled. He had just earned Big Ten Coach of the Year honors.
He well knows the stigma people with epilepsy face. "We've got a freak coaching the Minnesota Gophers," a fan once emailed him. Another time, after he had a seizure on the field during a game, a columnist wrote that he should be fired because fans don't pay money to be "rewarded with the sight of a middle-aged man writhing on the ground."
My son and Kill have become close friends since I told their stories in a story for CNN four years ago
. At a recent party for the coach that doubled as a fundraiser for the Epilepsy Foundation, Billy took the microphone from Kill.
Ever since his seizures started in May 2011, Billy has only had three months seizure-free. Lately, his seizures strike nearly every day.
He told the crowd of having seizures in the grocery store, at school, of falling down stairs and thinking he would no longer be able to walk. He spoke of riding in ambulances and staying in hospitals.
"It just kind of sucks," he said.
He paused before finishing with "yeah, it sucks."
My son is just 14, but he has helped raise more than $300,000 for people with epilepsy.
Maybe Netflix will consider helping the cause instead of ridiculing it.