Emily Kalina describes it like it’s something out of a sci-fi movie: “It sounds really bizarre when I say it, but I download the data from my brain and I put it into a computer, and I send it off to my doctors.” It’s a routine Emily has diligently followed for the past two years, and one that has completely changed her life for the better.
A digital artist with a passion for watercolors, Emily has lived with epilepsy for over two decades. Frequent seizures, dozens of medications and social stigma had been a way of life for her. And that’s not even the worst part of her story. Emily has been diagnosed with a subtype of generalized epilepsy called Idiopathic Generalized Seizure Disorder. This means she is among a group consisting of 30% of the epileptic population who are resistant to medication.
Responsive Neurostimulator
Almost two years ago, Emily was fortuitously introduced by her brother to new research about implants that were being used to treat seizures. Implants were nothing new to Emily. Around 17 years ago, she had come across a device called the Vagal Nerve Stimulator (VNS), which is implanted along the vagus nerve in the neck. The treatment looked promising, but Emily stopped short of trying it when she learned it was not approved for her type of seizure disorder.
This time around, Emily was introduced to a device called the Responsive Neurostimulator (RNS), which is inserted into the brain. Plugging a foreign object into her head didn’t sound appealing at first, but Emily says the seizures had become so severe that she was willing to try anything, including brain surgery, to find a cure to her ailment. She signed up as the seventh person with her type of seizure disorder at Mass General Hospital (MGH) to get the RNS, and it was a life-changing decision she would never regret.
“When you live with a chronic illness like that, which is, first of all, invisible and pervasive, there's no aspect of your life it doesn't touch,” says Emily.
“Even when I do everything right and tick all the boxes – make sure I get enough sleep, meditate, and all that stuff, I still have no control over it. This new treatment changed it all.”
Emily’s mission
While RNS has greatly improved her condition, Emily believes there’s still so much work to be done in the fight against the disease, particularly in finding funding for research in epilepsy.
“Having gone through this journey, I realized that research in epilepsy is terribly funded,” says Emily, who plans to create a non-profit and join hands with other proponents in finding ways to fund researchers working on a treatment for epilepsy.
Emily hopes to use part of the profits from sales of her artwork, as well as financial support from like-minded individuals and organizations, to kickstart a movement to educate the public and create awareness about the disease. Amid the high cost of US healthcare, Emily also intends to establish a patient assistance program for people with epilepsy.
“Despite some organizations doing various fund-raising activities, there's still not enough funding for those who need it most. We have to do more and I hope my story and those of others who have endured this disease will help draw attention to this important mission,” she says.
Short-term memory loss
The lack of control has been a recurring narrative in Emily’s long battle against the invisible disease. Despite having tried dozens of treatments, the seizures still kept coming back, characterized by involuntary muscle spasms, including a loss of bowel control at times. Also called tonic-clonic seizures, the recurring epileptic episodes last 15 minutes to half an hour and terrifyingly, would leave Emily with no short-term memory.
“It’s like trying to wake up out of an awful nightmare. You're trying to push out of it, but you can't,” explains Emily. “The only people I would recognize coming out of a seizure are my husband, my mom, and my brother. I wouldn’t even really recognize my dad sometimes.”
The worst part, she says, is that there are no warnings when a seizure happens, except for what she calls an aura, a smell or a feeling that comes to her around 15 seconds before a seizure.
Art
Emily felt rudderless in her lack of agency over her condition and as a result, her life. Jobseeking is vastly challenging for someone who may bring with their condition various liabilities. Emily’s art represented not only a means to keep her grounded and build her confidence but a lifeline to livelihood, allowing her to support herself with a flexible and safe work life.
Emily’s journey reflects that of many famous epileptics, Van Gogh, Da Vinci, and Michelangelo who found in art an opportunity to support themselves and express the unique perspective that comes with epilepsy’s isolation.
How RNS works
A few months after starting the RNS treatment, Emily says she started noticing a big change. The auras were back, but not the seizures. She quickly reported the incident to her doctors, who explained to her how the device really worked. RNS, developed by a company called Neuropace, re-educates the neural pathways in the brain, her doctors told her, teaching it how to avoid seizures.
“It's been a life-changing experience. It'll take me a long time to process how massive of a change it has been,” says Emily.
“I never had a time where I didn't have any seizures in my life. To me it was normal, I never imagined what it was like not having any seizures. When I look back, I could not imagine how I just powered through those years, because what else are you supposed to do? The RNS treatment changed everything, and it feels like I now have a brand-new life.”
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Name: Emily Kalina
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