Tuesday, July 23, 2024

Laura Beretsky with a copy of “Seizing Control,” her memoir of living with epilepsy and the often-alienating world of modern medicine. (Photo: Laura Beretsky)

Somerville resident Laura Beretsky was taking a break on a hot July day in 2013 in Davis Square Plaza, on her way to pick up her two children, ages 4 and 6, when a familiar feeling returned.

“I remember it very vividly,” she says now. “Somebody called 911 and I landed in the hospital.”

So began a turning point in Beretsky’s lifelong battle with epilepsy, one that she relates in vivid and often stomach-turning detail in her new book, “Seizing Control: Managing Epilepsy and Others’ Reactions to It.” The author will read from it Thursday at Porter Square Books, joined for a follow-on discussion with Dr. Steven Schachter, a professor of neurology at Harvard Medical School and past president of the American Epilepsy Society. According to Porter Square Books, the two will talk about the challenges of managing the condition and importance of a strong provider-patient relationship.

In a recent conversation, Beretsky recounted that the 2013 seizure was just one among hundreds she estimates she has had since her first at age 2. Most have been complex partial seizures, limited in duration (between 30 seconds and 2 minutes) and causing her to appear to be daydreaming or staring blankly. She has also suffered intermittently from grand mal seizures, episodes that can include stiffening of the body and convulsions typically including a loss of consciousness, followed by a period of confusion. According to the Epilepsy Foundation, one in 10 people will experience a seizure in their lifetime.

Over the decades, doctors prescribed dozens of different medications, trying to curb if not eliminate her condition. There were periods of relief, Beretsky said, but inevitably the seizures returned. By that summer’s day, she was having upward of 10 seizures a month, “but they were small,” she said. Her family became strangely accustomed to her behavior. “[The kids] could tell that something was off and then I’d come out of it and just kind of resume what I was doing. When they were old enough, my daughter would call me out. She would say, ‘Mom, you walked the wrong way home.’ And I was like, ‘Yeah, I’m sorry about that.’”

What particularly upset her that afternoon in Davis Square, however – and had been eating at for her for a while – was the possibility that she might have been alone with her kids. “If we were with friends or my husband was home, then I knew it would be fine.” Otherwise, “I was like, wow, if the kids had been with me, this would’ve been really bad.”

Soon after being released from the hospital that day, this fear for her kids’ well-being drove Beretsky to a life-changing decision: Undergo a right temporal lobectomy, excising a kiwi-sized portion from her brain’s frontal lobe. The procedure was straightforward, the recovery considerably less so – two months later she suffered a subdural hematoma requiring a life-saving emergency craniotomy. “The neurosurgeon had to use suction and irrigation to remove it. That second operation has fairly low statistical survival rates. I was very lucky,” Beretsky said.

“Seizing Control” recounts the author’s determination to address her condition and become a model of empowerment in the often-alienating world of modern medicine, in which specialists can lose sight of the whole person and patients are often forced to become their own best advocates. It’s a form of activism Beretsky said she adopted from her father as a teen and turned to almost instinctively. “Long before Colin Kaepernick was alive, I didn’t like the Pledge of Allegiance and refused to stand for it,” she said, laughing. She unleashed the same skills when faced with on-the-job discrimination, ultimately winning a settlement against her then-employer for an annual review that penalized her unfairly for her condition, not her performance. “You’re not screwing me over,” she said. “I know what you’re doing here … and I’m holding your feet to the fire because I don’t like this and because that’s who I am. I’m the person who won’t stand for the pledge, so you’re not going to mess with me.”

  • Laura Beretsky reads from “Seizing Control” at 7 p.m. Thursday at Porter Square Books, 25 White St., Porter Square, Cambridge. Free. Information is here.