‘My life’s work is to stop the stigma of epilepsy.’
“They thought I had meningitis. They gave me last rites, told my family I was going to die, but I didn’t. A few months later, I went to see a neurologist, and he told me I was having seizures. I went to see an epileptologist, and they discovered I was having 100 seizures a week on 28 pills a day.
“They said, it’s time to be evaluated for brain surgery. It was very scary for me and my family. My kids were only 5 and 11 at the time. I did a year of evaluation and discovered I was a candidate.
“The first step of brain surgery was grids, and I had a blood clot at that point. I had to be rushed back into surgery, take the grids out, go home for two months, wait for the clots to dissipate. Then I did a resection; so I have no right brain. The seizures stopped, and I was doing great.
“Four years later, I was working all the time and was so sick, but no one could diagnose me. It was a feeling of car sickness. After about two spinal taps, two cases of Bell’s palsy, they discovered I had late-stage Lyme disease.
I had to have part of my brain removed because not enough money is put into epilepsy research and treatment.
“I did 30 days of doxycycline and 30 days of IV antibiotics, but it never fully went away. I have arthritis in every joint, and all the antibiotics destroyed my teeth. This was in 2013.
“In 2018, my dog started doing nose-to-nose with me and would snarl, and I was afraid she was telling me I was having a brain bleed. Not even two weeks later, a mass formed on the side of my neck. I was then diagnosed with large B-cell non-Hodgkin lymphoma.
“I did six rounds of chemo, and I’m in remission now. I was doing a lot of crying. Like why me? I’ve been sick since I was 18 months old, on and off.
“I lost my sister-in-law in 9/11. She was in the North Tower. And I was very affected by her shoes by the door because she was expecting to come home that day. And I came to the realization that she had no choice. I have a choice, so I choose to fight. I trained to become a peer counselor, and I counsel others with epilepsy and non-Hodgkin lymphoma.
“I spoke to the House [of Representatives] about the underfunding of epilepsy. It is kind of barbaric. I had to have part of my brain removed because not enough money is put into epilepsy research and treatment. My life’s work is to stop the stigma of epilepsy.”
Interviewed by Melanie Gulbas