Adria Gross: Shining a light on epilepsy

There was a time when Adria Gross was willing to talk about her experiences as a disabled person as long as she didn’t have to let anyone know her name or where she lived. Today, she wants people to know who she is and what happened to her. She hopes it will inspire others to keep up the good fight.

Gross was horseback riding in elementary school “when I was bitten with some kind of bug … at least, that’s what doctors attributed my illness to after it hit me,” said Gross. “I was sitting in my religion class a few months later when I just passed out. When I woke up in the hospital room and saw the religious figures, I thought I’d died and gone to heaven.”

Instead, Gross found herself in bed for several days as doctors puzzled how she had contracted encephalitis, finally attributing it to a bite she received from a mosquito on the horseback riding trip. “They never really pinpointed the exact cause, but the encephalitis left me an epileptic,” something nobody realized until Gross had her first seizure.

Life took a turn for the worse for the girl who was chosen in kindergarten as “the best helper in class,” says the insurance agent wistfully. “Nobody wanted my help anymore. My social life became dismal,” said Gross, now a married mother of two adopted children from Vietnam. “My only friends were two other girls who had been ostracized at school. One was blind, and the other was African-American. I must say, we made quite an unusual trio but we helped each other get through those years.”

Gross’ mother never stopped looking for a cure for her daughter’s disease. In 1989,  she researched an operation available in Canada and Europe that was finally being performed in the U.S.: a  left temple lobectomy procured that Gross underwent , not knowing if it would cure her or leave her in worse shape than she was before. “I only knew I was willing to try it,” said Gross, “and my mother was my unrelenting advocate.”

Although the seizures abated after the surgery, Gross continued to take medication for six years until doctors declared her epilepsy-free. “It took time for my body to adjust to the changes it underwent as a result of the operation.”  But the stigma of being rejected because of her disability was another barrier Gross had yet to overcome to gain a real sense of self-esteem.

“With epilepsy, you never know when you have a seizure or what you might do,” said Gross. “One medication made me kiss a cashier when I was being waited on! During another, I passed out between two parked cars and broke a rib.  You might find yourself literally hugging a tree and not even realize you’re doing it. Driving a car is out of the question … and you really can’t be left alone. It’s very tough on the person with the disease, and it’s tough on the caretakers who not only have to protect you physically but from the cruelty of others who don’t know what you are going through. People with epilepsy are easy to shun because of the unpredictable things they can do. There is little public awareness out there about the disease, even today.”

Gross applied for a filing job at a brokerage firm, but was quickly placed into a higher position. From there, it was on to AIG where she worked in the insurance giant’s entertainment division. Eventually, she became an independent broker and now works as an insurance advocate for medical providers, attorneys and individuals with claims.  Gross credits the Americans with Disabilities Act, passed in 1990, as a “blessing that opened doors for many handicapped people.”

There is a lot of secretiveness about being disabled, said Gross. “There are people with disabilities that could be sitting right next to you in a restaurant and you’d never know it – not every disability is visual. One-hundred percent of the human race isn’t ‘healthy.’ In my case, my disease didn’t jump off the page. But if I had a grand mal seizure, it could be frightening to strangers who had no idea what was happening.And if you are alone, there is the potential to die and nobody would know what to do to help you.”

Today, Gross is going public with her story, openly sharing her experiences before, during and after her fight with the debilitating disease. “For years, I didn’t want to talk about it,” said Gross. “Now, I want to get out there and advocate for people with disabilities. Although I don’t consider myself handicapped anymore, it’s important to get out there to let others know they need not feel ashamed of something that they cannot control; My goal is to help  them have a positive outlook and believe they have a future. It’s important to remain positive and hopeful.”

Leadership Orange recently recognized Gross for her community work, giving her its 2009 Pinnacle award. “I was thrilled to be chosen,” said Gross. “I am involved in as many community programs as my time allows. I remember what it was like to be shunned for being different. Whether the disability is visible or not, it’s easy to forget there is a person inside there who has the same wants and feelings as a nonhandicapped person does.”