Emily Borghard ’11 was one of the first people to receive a brain stimulator implant. For Borghard, a life without seizures has opened up a new world.
VIDEO: Meet Emily and hear about her Pay It Forward project.
As part of her daily commuting routine, Emily Borghard ’11 stands outside the 168th Street subway station in New York City with a stash of new socks in her messenger bag. She offers a pair to a man sitting on the entryway steps, as commuters rush past him. She will be here again on the weekend.
Ever since Borghard received a second chance for a productive life, she’s dedicated it to paying it forward to help those in need.
In 2008, Borghard was a student at Geneseo, studying Spanish and French. She also started having more than 100 seizures a day, which was a result of auto-immune encephalitis, a rare condition that causes the immune system to attack the brain. The epileptic seizures it caused paralyzed Borghard’s daily life; she was in and out of the hospital, she couldn’t remember conversations, and she couldn’t drive.
Dr. Lawrence Hirsch, a neurologist at Yale University, suggested she try a responsive neurostimulator — a tiny device that is surgically implanted inside the skull. Roughly the size of a flash drive, the stimulator tracks brain activity. Two probes send a small shock when it detects the antecedents of a seizure to prevent it from occurring.
Though the device was experimental, and not yet approved by the U.S. Food and Drug Administration, Borghard agreed to get the implant during the device’s clinical trials.
As one of the first people in the world to receive a neurostimulator, NBC News followed her on campus for a story about her story and the cutting-edge surgery. She has also appeared in several national media news segments and stories about the surgery; the Wall Street Journal has called her “the first human cyborg.” “It was terrifying,” remembered Borghard. “But at the same time, I was ready for a solution.”
“Emily was one of the first of a handful of people to have the surgery (in 2008), very early in the clinical trials,” said Hirsch. “Without people like Emily, we would never know that this actually does work, and it is now in more than 1,000 patients throughout the country and rapidly growing.”
About two-thirds of patients who have had the surgery show at least 50 percent improvement in a reduction of the number of their seizures, Hirsch said. Patients are rarely seizure-free, but they can go long periods without any, he said.
When Borghard’s seizures become more frequent, and more intense, the device delivers stronger shocks, which makes her eye twitch. This alerts her to take extra anti-seizure medication, which helps to calm her symptoms. Each night, Borghard waves a wand-like device across her head near the implant. The device downloads information and sends it to her specialists.
Hirsch said patients like Borghard have provided crucial research data. Researchers have discovered more about seizure cycles and frequency. Use of the device may also expand to treat other forms of epilepsy, and may also inform research for Parkinson’s disease and other neurological disorders.
“Maybe there will be lots of other examples of brain stimulation. We are going to see a big growth of implanted devices that can both interpret what the brain is doing and stimulates and modulates that,” said Hirsch. “It’s a big, very interesting world.”
For Borghard, now anything is next. Since the surgery, Borghard has taught English in Marseille, France, for two years, and in 2017 she earned a master’s degree in clinical social work from Fordham University. She now counsels survivors of domestic violence for the Help ROADS organization in Brooklyn.
“If you told me then where I’d be now, I would have laughed, because I was barely remembering day to day conversations. I was living off my notes and what other people told me,” said Borghard. “None of what my life is today would have been possible. Never.”
Borghard says that Geneseo’s professors supported her so she could have the surgery and still complete her degree, as did her college friends and family. She also remembers how Hirsch and the doctors used their expertise to help her lead a normal life.
“There were so many people who helped me. They wanted to see me succeed,” said Borghard. “I can never repay them, so I pay it forward.”
For that reason, Borghard chose a career that aids others, and she dedicates her spare time to her homeless project. Since January, she has provided hundreds of pairs of socks, blankets and toiletry kits to those in need, running an online fundraiser through Go Fund Me called Pay it Forward NYC to pay for supplies. Every Sunday, she hands out donated clothing to those in need at a church.
Paying it Forward
Often, Red and Mark, who are homeless, collaborate with Borghard. Mark lets her know who needs clothing and items the most. He and Red ran a clothing drive as well, to help Borghard help others like them who are in similar need.
“I did that because I found out how everything can flip,” said Mark, who does not use his last name. “I had an apartment in Bayside. I lived in Brooklyn. And then it just went away. I realized inside how hard and how fast this can turn. When I see people like Emily, it inspires me. There are people in the world that are doing things, who are unimaginable. Who does this? But she does. Some people do. When I see her, it puts a smile on my face, every single day.”
Borghard hopes that others find their own way to pay it forward in their community.
“This fulfills me when I meet these amazing people, who have stories to tell,” said Borghard of Red, Mark, and others she helps. “If we all took two minutes a day to simply acknowledge them, think of the things we might learn. I have had people on the subways of New York — during rush hour — stop and ask why I am handing out underwear and socks. The next day, a couple of the homeless men in the same subway told me that two people brought them sandwiches and juice. I have to hope that this gets people thinking of how they may make a difference.”