When Mylene Delaire comes to after a seizure, she doesn’t recognize anything around her. She doesn’t know her family and friends from strangers, where she is or even the date.
“It’s like you’ve time-traveled and you’re waking up in a new location,” says Delaire, who has epilepsy. “You don’t know what’s going on.”
She remembers a few years back, watching The Time Traveler’s Wife, which follows a man who jumps through time at random and without control. In the movie, the doctor looks at his brain activity during an episode and says it’s similar to a seizure.
Fast-forward to 2013: Delaire remembered that scene when she decided to create a nonprofit that educates people about the disorder and helps connect others suffering from seizures to resources. She named it the Time Travelers Foundation.
“There wasn’t a [French] word for seizure. People called it a crisis. You would have an epileptic crisis.”–Mylene Delaire, Time Travlers Foundation founder
Delaire was born and raised in France. When she was 16, she was diagnosed with epilepsy after having her second seizure on Halloween night.
People around her didn’t understand what was happening. “There wasn’t a [French] word for seizure,” she says. “People called it a crisis. You would have an epileptic crisis.”
Also, she says people associated it with mental illness as opposed to a neurological disorder. The condition and the lack of understanding in her community surrounding it left her depressed.
Delaire moved to the United States to start a new life and escape some of the social stigmas she faced at home. At age 19, she arrived in Boston in 2005 (inspired by the television show Ally McBeal) and then Las Vegas in 2012. She continued to consult with doctors and get treatment and has gone through multiple types of medication. During this time, she was having more and more seizures where she would wake up on the cold tile floor of a restaurant bathroom or in some public place with what felt like a million eyes watching her.
“But I never felt ashamed,” she says.
“If you have to call out of work because you had a seizure, your boss might be understanding the first time. But after the second, third or fourth time, that’s not really the case.”–Delaire
Her condition also led to many losses: various jobs and even her driver’s license, which restricted her independence. She was recently able to regain it.
“If you have to call out of work because you had a seizure, your boss might be understanding the first time,” Delaire says. “But after the second, third or fourth time, that’s not really the case.” While the disorder isn’t grounds to get someone fired, she adds that constantly missing work could be. One day in May 2013, she left her third-floor apartment to take out the trash, and bam! A seizure hit, sending her crashing down the stairs.
Delaire survived with a broken jaw and stitches on her chin.
It was then when she decided to start a nonprofit to provide resources to people with epilepsy as well as other seizure disorders.
“People don’t realize that with MS, you can also have seizures,” says Steve Guzman, one of the board members who has multiple sclerosis. “I didn’t realize until I had one in 2012. I was able to talk with Mylene about it.”
“There are going to be times when it looks like the organization isn’t progressing the way you want it. As long as your heart is in it, everything will work out.”–Steve Guzman, Time Travelers Foundation board member
Guzman, who had experience working with nonprofits, has helped Delaire start the foundation, giving her tips along the way.
“There are going to be times when it looks like the organization isn’t progressing the way you want it,” he says. “As long as your heart is in it, everything will work out.”
Time Travelers Foundation currently provides resources such as information on nutrition and different medications and their interactions. Members of the organization—there are currently six active members—have also set up booths at various events such as First Friday to get the word out.
Delaire says they are still finding their footing but she sees the future and it will include support groups, conventions centered around epilepsy and seizure disorders, and access to financial resources so those affected can afford alert dogs.
“I don’t want to rush anything,” she says. “This will all happen on its own time.”
This year, the foundation took steps toward a major goal: to be able to provide scholarships to students who suffer from epilepsy or even students who plan to study neurology. The nonprofit is partnering with Touro University to make this happen.
“When you have a disability, you have to own it.”–Delaire
No matter what the organization grows into, Delaire says one of her top goals is to decrease stigma and shame.
“When you have a disability, you have to own it,” she says. “You have to accept it and move on. This has made me who I am.”
Time Travelers Foundation is the featured organization at the monthly benefit show Mondays Dark at The Space on July 24. Tickets start at $20. mondaysdark.com