Brainwaves and brushstrokes: Emily’s epilepsy journey

This blog post was co-written with Emily & Chris

Epilepsy is often described in clinical terms: seizure types, EEG readings, and medication regimens. But behind every diagnosis is a life shaped in ways both visible and invisible.

Emily Kalina’s story doesn’t fit neatly into any one category. An artist and advocate, she has spent a lifetime navigating a condition that resists easy explanation, living at the intersection of art and science. Today, her Responsive Neurostimulation (RNS) implant monitors and responds to brain activity, while Empatica’s EpiMonitor delivers real-time seizure alerts, helping those around her act quickly with greater peace of mind.

A classically trained artist from the Rhode Island School of Design (RISD), Emily built a career rooted in watercolor, teaching, exhibiting, and selling her work over the course of decades, with her creative work deeply intertwined with her experience of epilepsy.

Today, she lives with her husband Chris and their (therapy) cat, Asher. Together, they navigate epilepsy not as an individual condition, but as a shared reality. Because epilepsy doesn’t just affect the person diagnosed, it reshapes the lives of partners, families, and loved ones, those who learn to live alongside uncertainty, often without recognition or support.

This is Emily’s story. And her husband Chris’s, too.

How it all began

“I was first diagnosed when I was 18 or 19 years old, when I had my second generalized tonic-clonic seizure,” she explains. “I was sleep deprived and partying a little with friends.”

But her first seizure came earlier, at just 16 years old. “I was taking a bathroom break during class while at boarding school. I had it in a tiny bathroom stall, and I don’t know how people discovered that it happened, but apparently, my teacher had to climb over the bathroom stall to get me out. I don’t remember any of that. I just remember that I went into the bathroom, and the next thing I knew, I was in my dorm room. I felt terribly embarrassed but mostly confused.”

Looking back, Emily now recognizes that what she experienced daily as a teenager were seizures that went undiagnosed, and at the time, her symptoms were misinterpreted. “I didn’t clock that the 15–20 small events I was having every day were absence or partial complex seizures because how would I know? It was just my reality. Doctors thought that the symptoms from my undiagnosed partial complex and absence seizures were ADD.”

The in-between years

For Emily, her twenties were defined by a constant negotiation between managing seizures and trying to live a full life.

“The majority of my twenties were spent in and out of hospitals, getting CAT scans, EEGs (both ambulatory and in-patient monitoring). I went through approximately 10 different seizure medications in an attempt to find something that would successfully control most of my seizures.”

When she did find a combination that worked, it came at a cost. “Anti-seizure medications are powerful central nervous system depressants. Life became a constant internal calculation of how much sleep I got, how much stress I was under, hydration levels, sunlight exposure, flashing lights; everything had to be monitored. When I made plans, they always came with the caveat that I might need to cancel. I couldn’t drive… I never fully escaped the unpredictability.”

And while others saw resilience, Emily experienced something more complex. “People often told me I was strong. But is it really strength when there is no other choice?”

The RNS: A turning point

As Emily’s tonic-clonic seizures returned around 2019, with increasing frequency and no warning auras, the urgency for a new solution grew. This led her to pursue Responsive Neurostimulation (RNS), a device designed to monitor and respond to abnormal brain activity in real time, in the hopes of providing non-medicinal treatment for her seizures. The RNS device is implanted directly into the brain and works by reeducating neural pathways and teaching the brain to have fewer seizures.

While the journey through surgery and recovery was complex, both physically and emotionally, it marked a turning point. The RNS didn't eliminate Emily's epilepsy, but it gave her something she had spent decades searching for: a foothold.

Finding Empatica: Awareness and peace of mind

Managing epilepsy today often means combining multiple tools, clinical, technological, and human. For Emily and Chris, Empatica’s technology became part of that ecosystem. At the time, the device was called the Embrace, the world’s first FDA-cleared wrist-worn wearable for epilepsy. It detects possible convulsive seizures and instantly alerts caregivers, whether they're sleeping next door or are living miles away. “I think I discovered it when the GTC’s came back around 2019. I had no aura beforehand. I had at least had aura’s before the seizures when I was younger, so this evolution was even more terrifying to us all.”

“Finding Empatica’s Embrace was a huge help and comfort to my husband and family.”

Emily was already aware of the risks of Sudden Unexpected Death in Epilepsy (SUDEP) at the time, and the need for real-time alerts became more urgent as her seizures changed. “At least then they knew they would be alerted when I had one, and they could find me.”

Emily has since upgraded to Empatica’s newest seizure monitoring wearable, EpiMonitor, which also includes an expanded seizure diary, with sleep and activity insights. She explained that EpiMonitor complements her RNS implant in a meaningful way. “While neither one can predict the seizure, the RNS provides the round-the-clock brain data and intervention, and Empatica’s EpiMonitor provides the peace of mind and real-time alert for my family. The systems complement each other very well.”

For Chris, that shared awareness matters. “While nothing prepares him for the terror of me having a seizure, I know that EpiMonitor is a huge help. I also think it’s helpful because just the nature of having a seizure and its effect on him can feel really isolating. It is helpful for him to know that several people can come to my aid, not just him, if and when he’s alerted by EpiMonitor. That goes a long way.”

Emily also shared one standout moment where Empatica’s technology truly helped. “One time, I was walking downtown, after the brain surgery but before the RNS was turned on yet, waiting outside a local juice bar in the summer, and I had a GTC and the Embrace alerted everyone. I happened to be on my phone with my mom at the time, so she heard it happening but couldn’t do anything. Since my husband was notified, he came right away and got there in a couple of minutes. I know that was very reassuring to both of them. Also, someone I was waiting in line next to happened to be a nurse in the army as well, and she could provide excellent assistance. All in all, I think that experience was incredibly valuable.”

Chris: The other side of epilepsy

While Emily was navigating seizures firsthand, Chris was learning to live with epilepsy in a different way, as a partner. This perspective is often overlooked. Yet it carries its own emotional weight.

“There was a tremendous amount of helplessness,” Chris shares. “Coping strategies included therapy and a lot of learning to communicate more effectively with my wife and to include other people in our circle, so it wasn’t just on me.”

Epilepsy reshaped even the most basic aspects of daily life, especially sleep. “Sleeping at night was interrupted a lot because I would always be listening for a weird sound from Emily; it made getting solid sleep hard. Eventually, we got a couch that would be comfortable enough for me to sleep in some nights, as sleep for her is essential to reducing the possibilities of seizures.”

But one of the biggest challenges was the lack of support. “There is no education or understanding around how to deal with epilepsy, and there are very few to no support groups for people who are caregivers or partners.” When asked how he manages to balance being supportive without becoming overprotective, Chris shared: “I don’t think we’ve gotten there yet; it’s a work in progress.”

By sharing Chris’s experience, we hope to highlight something rarely acknowledged: epilepsy is not an individual condition; it is a shared one.

The MGH mural: Where art meets science

Art has always been central to how Emily processes and reclaims her experience. Trained at RISD, she spent years working in watercolor, building a career selling paintings through galleries, to private clients, and teaching. Epilepsy not only reshaped her life, but it also changed her creative process. “To really master watercolor, you have to let it go. That parallel between watercolors and my illness has never left me. I plan, I schedule, but then my illness has a mind of its own, and I accept that I am powerless over the results.”

As her condition evolved, so did her tools. Transitioning to digital art allowed her to conserve energy, especially since watercolor requires time and effort to set up and clean up. “With the iPad, I could just turn on a tablet and paint whenever I wanted without feeling that I’m having to sacrifice any of the look and feel of painting in the medium that I love.”

Her work reached a powerful intersection of art and science when she was invited to create a piece for Massachusetts General Hospital (MGH). Emily jumped at the opportunity to be able to create artwork for the walls that she had spent so much time staring at. “I reflected on the symbolism of the ocean; waves as a metaphor for life’s unpredictability.” Emily incorporated EEG data from her own RNS device into the artwork. “The EEG lines formed the crests and foam of the wave. The piece represents both the chaos of uncontrolled seizures and the containment and stability I have found through surgery.”

Looking to the future

Emily continues to live at the intersection of art, science, and advocacy, using her work to raise awareness and reshape how epilepsy is understood. She founded the Epilepsy Awareness Project so that others have somewhere to turn to for information. The project was built with a simple but powerful goal: to provide a broad collection of information, resources, and coping strategies, designed by people living well with epilepsy, for people living with epilepsy. It is not intended to replace care from neurologists or medical professionals. Instead, it exists to help cut through the noise, offering clear, reliable, and up-to-date information so individuals can make more informed decisions about their health and feel less alone while doing so. Notably, the project has become a recommended resource to patients by the Chief of Neurology, Dr. Sydney Cash and his team at MGH and the Director of Functional Neurosurgery at MGH, Dr. Mark Richardson and his team.

Emily also continues to grow her art business alongside her work on epilepsy advocacy, taking on big projects for clients, including designing artwork for a hotel group. Her story reflects something larger: Epilepsy may shape a life, but it does not define its limits. Through creativity, technology, partnership, and community, it is possible to move beyond survival and toward reclaiming agency. “When I am unable to do anything that feels outwardly productive because my seizures are so unpredictable, it feels good to be able to create something beautiful. It not only provides activity for a hand that always needs to be doing something, but it helps to ground me and remind me of who I am.”

And just as importantly, it reminds us to widen the lens. Because behind every person living with epilepsy, there is often someone else, watching, supporting, adapting, and carrying their own unseen experience.

Those stories deserve to be told, too.