JOSH GOLDEN KNOWS THE POWER OF WORDS. After all, they are essential in his job: Golden has worked in high-level marketing roles for decades, using words as his most important tools. But in his personal life, he shied away from one that he feared would unfairly define him: epilepsy.
Until recently, Golden—who is the chief marketing officer at Quad and lives in Westchester County, NY, with his wife and teenage children—told very few people that he has suffered seizures (now controlled) since he was a teenager. But after living with epilepsy for nearly four decades, Golden has decided it is his time to speak out. Not just for himself, but to advocate and support other people—particularly young people—who have the disorder and are worried about the stigma that still surrounds it.
It can be uncomfortable to talk with others about a health condition, but it can be especially challenging for people with epilepsy. Discussing an injured knee? No problem, says Golden. Friends would be comparing notes and sharing doctors’ names. But recurring, uncontrolled seizures? “Suddenly, they become much more quiet,” he says.
To combat this stigma, Golden has started advocating—a role he is well-suited for—as a new member of the Epilepsy Foundation board. Despite how daunting sharing his struggles can be, Golden says, “It’s so much easier than when you’re endlessly hiding, struggling and distancing yourself from it. And it lets other people know maybe they don’t have to be as scared.”
Golden had his first seizure at 13. He didn’t talk about epilepsy, despite suffering recurring seizures. “I would tell my closest friends that I had a seizure disorder caused by a cyst,” he says. While the story was true—he had a lime-sized cyst nestled in his left temporal lobe—Golden admits he was carefully avoiding the “E” word.
At 17, Golden had his first brain surgery, to drain the cyst. (At 38, he had a second surgery on the same cyst.) When he came back to high school post-operatively, Golden says, he wore a hat to cover his scars. “I was just trying to avoid being ostracized,” he says.
Golden’s feelings, however, began to evolve in his early 20s. His then future wife, Jennifer, urged him to take responsibility for his epilepsy—it had to be his to own, not anyone else’s. He says the conversation left him feeling empowered—particularly in dealing with anxiety, which is critical to avoid when you have epilepsy, and a natural by-product of constantly worrying about having a seizure. “I was the person saying what was going to matter,” he says. “I was making the decision to take anti-anxiety medication—I became my own advocate.
Golden became proactive about managing his breakthrough seizures too. Along with trying to be aware of how he feels prior to a seizure coming on and immediately trying to calm himself (sitting, breathing slowly, taking medication), he asks for help. “I communicate with a person nearby about what’s happening and what will help keep me safe,” he says.
Now, with his seat on the board of the Epilepsy Foundation, Golden is ready to advocate for others. Helping to remove the stigma around seizures—and making sure people know how to handle them—is one of his primary goals. “The problem is that no one talks about seizures, because of that discomfort that everyone feels, and no one knows what to do,” he says.
Golden has, through the years, helped other people who are having seizures—unintentionally being in the right place at the right time with the right skills. He advocates for seizure first-aid training to be as commonly taught as CPR and EpiPen education. “You should definitely know what to do if a seizure happens,” he says. (Check out the tips in the sidebar.)
Since becoming more open about his condition, Golden says he has been able to help young people who are newly diagnosed—and their parents, who are worried for their kids—by talking about his life and how he manages epilepsy. “Yes,” he says, “sleep, good nutrition, and anxiety management are essential. Yes, alcohol is off the table. But no, this isn’t going to define you. The career you want, the life you want—it’s all there for you. A life lived with epilepsy is no less beautiful than any other.”
Remain calm and keep track of how long the person is seizing. Stay with them until the seizure is over.
Keep the person safe by turning them onto their side and placing something soft under their head.
Keep their airway clear and avoid putting any objects in their mouth.
Call 911 if the seizure lasts longer than five minutes, the person is sick or pregnant, they’re having repeated seizures or difficulty breathing, or if the seizure occurs in water.
DO YOU HAVE A SEIZURE ACTION PLAN?
If you experience seizures, having an action plan helps both you and those around you. A health-care professional may prescribe a rescue medicine as part of that plan. Talk with your doctor, friends, and family, and learn more at epilepsy.com/preparedness-safety/action-plans