After a seven-year battle with a neurological illness, Kimberly Bari ’06 has found the middle ground.
Imagine this: Your dream of teaching English in China comes true, and you ship out for all the thrills and lessons that such an experience will bring. But within just a few weeks, you begin suffering from seizures. You’re in a foreign country, dealing with an unknown condition, all while doing your best to teach English to local Chinese residents.
That was the very real experience of Kimberly Bari ’06. The anxiety and seizures she experienced in China were just the beginning of what would be a seven-year battle—first to discover the root cause of a mystifying brain condition and then undergoing extensive treatment to combat it. Suffering from epilepsy and autoimmune limbic encephalitis, Bari lost the ability to read and write and experienced erratic behavior, hallucinations and suicidal thoughts.
Today, thanks to her own perseverance, the support of family and the cutting-edge minds and technology of the University of California, San Francisco Medical Center, Bari is living a nearly seizure-free life. Each day is a step back toward her goal of returning to the classroom as a teacher. “Right now, it’s my goal to get back out into the community, and I’m doing it slowly,” says Bari, who lives in San Francisco. “I still want to return to teaching.”
Originally from Norwalk, Connecticut, Bari says she fell in love with Elon University after hearing about the school from a former student and visiting campus. “It was so beautiful to see that I really didn’t have to think twice about it,” she says. A psychology major, she started volunteering through the Phi Kappa Phi Honor Society at R. Homer Andrews Elementary School, where she grew close with a kindergarten teacher and the students in her class. That’s what solidified her desire to teach. “I loved it so much that I decided to keep volunteering even after the Phi Kappa Phi program had ended,” she says. “I was working with students to help them learn English, and that was so rewarding.”
After graduating in 2006, Bari earned a master’s degree in education from Loyola College in Maryland, and moved to Spokane, Washington, where she started as a substitute before becoming a second-grade teacher. It was in 2010 that the opportunity to combine two passions, travel and teaching English to speakers of other languages, emerged, propelling Bari to Nanjing in the Jiangsu province in China where for the next year she planned to teach English at the Nanjing College of Information Technology. Within three weeks of moving to Nanjing in August 2010, Bari experienced her first seizure, initially chalking it up to perhaps an allergic reaction, a lack of exercise or something related to the move.
By October seizures were disrupting her sleep, and she began feeling vibrations in her head while eating and losing her short-term memory. Hallucinations worsened while emotional instability followed and she flew home to the United States in February 2011, with little insight into what was causing this. Substantial treatment for epilepsy and psychological conditions were doing little to improve her condition. She endured countless MRIs and EEGs, a PET scan, spinal taps and medication cocktails.
Bari was eventually diagnosed with autoimmune limbic encephalitis, a disorder that impacts the limbic system that controls thoughts, feelings, emotions and behaviors. Beginning in September 2012, two years of treatment from a doctor in New York helped return her mental stability, but her cognition remained impaired and she continued to suffer from epilepsy. In October 2014, due in part to medication she was taking, Bari suffered a loss of consciousness while living in San Francisco and a fall that caused her to fracture her skull. She was rushed to UCSF Medical Center where neurologists took on her case.
In 2016 the UCSF team recommended brain surgery to remove parts of her brain and scar tissue they believed were causing the seizures. It would be the first of two brain surgeries, and the beginning of Bari’s real recovery from this life-altering condition. “I remember after the first surgery, I woke up with a huge sense of relief,” Bari says. Throughout her life, Bari had suffered from extreme emotional highs and lows and ongoing anxiety. That had now changed. “I finally had the middle ground—the middle ground that I had wished for so that I could mentally understand my feelings. I thought, ‘This is really me. Now I have the stability I am wishing for,’” she says.
To help control her seizures, in May 2017 doctors placed a Responsive Neurostimulation System device inside Bari’s skull connected to the area of her brain that was continuing to trigger seizures but that they were unable to remove due to its role in speech and cognition. The device reads signals (think pacemaker) from the brain to monitor for potential seizures, and upon detecting the start of one, is able to use electrical stimulation to stop or minimize the seizure. It is also able to capture data about Bari’s brain and seizure activity that helps to remotely provide her neurologists a picture of what’s going on. “The device is on 24 hours a day, seven days a week,” Bari says. “I’m no longer alone in trying to overcome this. I’m being constantly monitored by such a great team of doctors, and I’m learning so much, which I love.”
Bari’s amazing case was featured in a short documentary titled “Rebooting Kimberly’s Brain,” produced by UCSF and featured on the Bay Area CBS affiliate, KPIX. For Bari, sharing her story is a way to give back and to help those who are struggling with mental health, epilepsy and neurological conditions. While her brain heals and she continues to recover, she’s dedicating herself to volunteering with a variety of organizations including the National Alliance for Mental Illness, the Epilepsy Foundation and the UCSF Benioff Children’s Hospital. She’s become an ambassador for NeuroPace, the maker of the device she has now.
The experience has taught Bari to know that “nothing is ever over,” she says. “Emerging from this in such a positive way is really enabling me to give back to those in the community around me. The fact I’ve survived can provide hope to so many others.”