Ashley Calvento is a certified personal trainer with a witty sense of humor. When you look at her, there’s no visual indicator that she has a chronic illness that, as of today, is incurable. But in reality, Ashley has epilepsy and has dealt with seizures since the age of 18.
“For two years, I was having auras, with intense deja vu, tastes, and smells, and then it would all go away after about thirty seconds,” she said. “I didn’t know they were seizures because I didn’t black out; it happened every couple of months, but it didn’t really impact my daily life.”
In the summer of 2019, Ashley started her dream job as a personal trainer at Equinox. Whether due to stress or some other factor, she started to have these focal seizures more often.
“I had one while I was training the regional training manager for Equinox, and I actually passed out. And then it happened again, at work, within a couple of days,” she said. “The hospital thought I might have some sort of fainting disorder, so they had me in the waiting room, waiting to be admitted, and I actually had my first grand mal seizure at the hospital – while I was waiting.”
While these weren’t the last seizures Ashley had at work, they did teach her something important.
“There hadn’t been any seizure recognition and first aid training done at this gym, so the other employees didn’t know to turn me on my side when I had a grand mal seizure at work,” she said. “They didn’t know to turn me on my side, and they left me on my back for so long that, after, they told me I had started to turn blue.”
Thankfully, it didn’t take too much longer for Ashley to have a breakthrough in the management of her epilepsy – even though it technically was an accident.
“When I was a teenager, my gynecologist put me on birth control so that I could skip my periods because my PMS was so bad. Fast forward to a few months after being diagnosed with epilepsy, and I was still using birth control because it was working for me. But then I realized that I was getting 10-20 focal seizures during the week of the month that I should have had my period,” she said. “I actually forgot to pick up a new pack of birth control one month and so I had my period, which I hadn’t had in years. That week, I didn’t have any focal seizures at all.”
Ashley believes that regulating her hormones has played a significant role in getting her to where she is today: nearly a year free from focal seizures. Still, epilepsy isn’t without its challenges.
“Before my seizures were well-managed, I had to leave a job because my manager was annoyed that I was having so many seizures at work. I had times where I didn’t think that I could really live my life, where I lost my fitness because going to the gym was so hard, where I lost my driver’s license because of my grand mal seizures,” she said.
“Today, it’s still hard to go to events because I have to bring my medication and I don’t know if security will try to take it away from me. I still don’t drive on freeways, either, because I’m scared of having a seizure while doing that, and I still have to schedule my life around taking my medication twice a day, too.”
Epilepsy has even changed Ashley’s ability to celebrate significant life milestones.
“On my 21st birthday, I woke up in a complex focal seizure already,” she said. “I was looking forward to having my first birthday drink, but I have a grand mal seizure instead.”
Thankfully, Ashley hasn’t had another grand mal seizure since November of 2019. And, as a direct result of her own experiences with having seizures in public places, Ashley has grown into her role as an advocate. She currently serves as an Awareness Ambassador and the Community Engagement Coordinator for the Epilepsy Foundation, and makes a point to highlight seizure recognition and first aid training.
“Before, I wanted to just forget about my diagnosis, as if it would go away just because I didn’t think about it. Creating my Instagram and publicly speaking about my illness has helped to shift my mental health so I can see things in a more positive light,” she said. “And now I get so many messages from people that are embarrassed about their epilepsy, and from parents whose kids are getting bullied for having seizures. So I’m able to share my positive perspective and my hopes with them, and hopefully help them feel like they’re in a better mental place.”
Through each of these efforts, Ashley is helping to bring this so-called invisible illness into the light, and helping other people with epilepsy feel more confident along the way.
“It does get harder before it gets easier, but I tell every person that they’re going to find a way to navigate through it,” she said.
“I wouldn’t be who I am today if I didn’t have epilepsy, and I wouldn’t have this whole community in my corner. I encourage everyone to focus on what they really love in life in order to push through the hard times.”