Profile Series: When You're Not Invited to Your Own Surprise Party
How an unexpected diagnosis reshaped Fran-Claire Kenney's everyday
This is part of a series of profiles focused on life with various illnesses and disabilities. If you’re interested in being profiled, feel free contact me at zoecunniffe@gmail.com or through Substack direct messages.
On an ordinary morning last November, Fran-Claire Kenney suddenly found herself sitting in her office chair with her bosses staring at her from across the table. While Kenney remembered none of it, they informed her that just a few minutes earlier, she’d been splayed on the floor, foaming at the mouth, with her limbs twitching uncontrollably.
One of Kenney’s bosses, an editor-in-chief at the community newspaper Kenney has worked for since last summer after graduating college in the spring, has a close friend with epilepsy and recognized Kenney’s episode as a seizure—something Kenney, at twenty-three years old, had never once experienced. “We have no family history of epilepsy,” she explains, and the doctors at the ER afterwards agreed that she was unlikely to have the condition, asserting that it typically starts only in childhood or alongside dementia in old age.
Unfortunately, this seizure wasn’t a one-off event. A month later, Kenney was trying to fall asleep in the passenger’s seat of her dad’s car when she glanced over at him and he told her it had happened again. From here, Kenney visited a neurologist, who diagnosed her with epilepsy after all. In reality, the neurologist explained, developing epilepsy in the early twenties is far from uncommon (and in fact, epilepsy can begin at any age). There had actually been signs already, though Kenny hadn’t known to link them with epilepsy—for example, her hands had been losing their grip, leading her to occasionally drop or fumble with whatever object she was holding, sometimes even throwing it by accident. Often, Kenney learned, college kids brush off these early symptoms as consequences of sleep deprivation, not recognizing them as epilepsy until the seizures start.
Knowing what she knows now, Kenney wishes there were more awareness about adult-onset epilepsy. It’s already alienating to be suddenly managing a new chronic condition, and diverging from the typical presentation only makes this harder. Once, Kenney says, she was feeling “bummed out” and decided to look up celebrities with epilepsy to make herself feel less alone. One of these celebrities was Prince, who said he had the condition as a kid but eventually grew out of it.
“Thanks, Prince,” says Kenney. “I grew into it.”
Even though she’s taking an anticonvulsant to manage them, Kenney has to be vigilant about the ever-present possibility of seizures. “There’s really no good place to have a seizure,” Kenney says—but some places are worse than others. For example, her second seizure occurred in a pretty ideal location: strapped into a cushioned seat where she was protected from falling or bruising herself. The first time, meanwhile, Kenney woke up to find her head bleeding from hitting the floor, and she could also tell that she’d bitten her tongue pretty hard. “It’s only after you receive the news that you start to notice all the little goodies [the seizure] left behind for you,” Kenney says drily.
Now, Kenney views the places she goes in terms of how hazardous it would be to have a seizure there. “I'll be waiting for the train and scooch back a little bit because I'm like, it would be bad if I fell on the tracks right now,” she says. Other times, Kenney is cooking and suddenly realizes that a seizure could mean collapsing into the pot of boiling water in front of her. “Even though I’m allowed to cook by myself,” she explains, “it kind of sucks the joy out of it.”
Kenney says she’s lucky that her great passion in life isn’t an extreme sport, which she’d have to immediately quit, but that doesn’t mean she hasn’t been forced to give up activities she cares about. Taking baths, for example, used to be her “private time,” where she would turn on a podcast and shave her legs, but now she can’t bathe without someone else supervising to make sure she doesn’t have a seizure and drown, which would sap the moment of its entire purpose. Similarly, swimming is one of Kenney’s favorite ways to get exercise, but the tone wasn’t the same last time, with her dad cautiously monitoring from the shoreline.
“I couldn't help thinking about how stressful this must be for him,” Kenney says. This is one thing that’s particularly weird about seizures—while Kenney herself has no sense of time even passing, she finds that each seizure “affects everyone who witnesses it a lot.” While Kenney has never observed it, she knows it can be upsetting to see someone with flailing limbs and a foaming mouth, and the awareness that she’d have to rely on the people around her in the event of seizure changes the nature of her relationships. “With most people I care about, I wonder what it would be like for them if they were to encounter me having some sort of neurological episode,” Kenney explains. “So that's new.”
As Kenney describes it, having a seizure is a bit like “being the only person not invited to your own surprise party”—something she finds out about only from the startled reactions of whoever’s around. “If people ask me what it's like to have a seizure, I can't tell them,” she says. “I'm not here when it happens.”
She also loses her memory of the moments immediately following seizures: saying “What the fuck!” on the floor of her office, struggling to peel her jacket off in her dad’s car, even an entire phone call with him after the first seizure. This is because of what’s called the postictal state, a brief post-seizure period that can cause symptoms like soreness, headaches, and mental confusion.
Even once this phase ends, Kenney says, “The eggs are scrambled for a few hours after,” leaving her agitated, worn-out, or lacking her usual common sense. At the ER after her second seizure, Kenney even tried to pry the IV from her arm after becoming irritated by its presence, and while her dad was luckily there to intervene, she’s still unsettled by this deviation from her usual behavior. “I’ve seen my fair share of medical dramas,” she says—in a rational state of mind, she knows ripping an IV from your own arm would be grisly.
What Kenney misses most of all about her pre-epilepsy life is the autonomy she lost when seizures became a part of her norm. “It's not like I can never live by myself, but there are a lot of things I can’t do by myself anymore,” she says. “And as someone who values independence, that’s been hard to come to terms with.”
For example, epilepsy has forced Kenney to rethink the plans she had for the next stage of her life. Before, the goal was to move back in with her parents for a year while applying for grad school in Dublin, where she studied abroad in college. Now, it looks like Kenney will be getting her master’s degree in journalism at home in Philadelphia. “I can't leave the town where all my doctors are,” she says—not to mention the strong support network of family and friends she already has there.
“Part of my consideration was, who's going to help me at the emergency room if I have a seizure in a foreign country?” Kenney explains. “I wouldn't be making friends just for the sake of making friends. I'd be making friends with this question in the back of my mind of, are you going to show up for me if I have a health emergency?”
Kenney already lives with the possibility that she’ll have to rely on strangers if a seizure occurs when no one she knows is around, something complicated by the fact that Philadelphia’s ongoing opioid crisis could lead someone to interpret an epileptic seizure as an overdose. “You should want to help someone regardless,” Kenney says, but she wears a medical bracelet stating her diagnosis anyways, because she knows that, unfortunately, many people won’t.
Meanwhile, the fact that Kenney’s seizures started while living with her parents again makes Kenney’s newfound dependence on others even more complicated. For example, high protein intake is recommended for people with epilepsy because protein can help reduce seizures, and Kenney’s parents often make nudging comments like “Where’s your protein?” when she slips into the kitchen for a snack. “I know it’s well-intentioned,” Kenney says, but the reminders still frustrate her—especially since she knows deep down that she’s not always good about remembering to eat protein on her own. “I’d like to think that I can take care of myself,” she explains, “but on some level I know I can't.”
Similarly, Kenney’s had to rely on her parents for transportation at times because Pennsylvania law prohibits people with epilepsy from driving until they go six months seizure-free. Philadelphia has a strong public transit system compared to most US cities, but there are still certain places it can’t reach. “It’s felt like I’m back in high school again in terms of getting driven to and from doctor’s appointments,” Kenney notes. “It’s hard not to feel like a burden at times,” says Kenney, “which I know is a little ridiculous because the person this is affecting most is me.”
Living somewhere with a robust transit system has long been a priority for Kenney, but epilepsy makes it a flat-out necessity. “If I don't have regional rail and buses and a couple of trams to get me around,” Kenney says, “I’m completely reliant on who I know that has a car.” Now, Kenney is channeling her energy into advocating for everything she loves about public transit. In April, she took part in a rally against budget cuts to Philadelphia’s public transit system, and photographs of her holding up a cardboard sign reading “EPILEPTICS 4 PUBLIC TRANSIT” appeared in multiple news pieces about the protest. Kenney notes doesn’t just see public transit as valuable for epileptics—she also recognizes her connections to people with other conditions that can make public transit essential for independence, such as mobility disabilities, visual impairments, and narcolepsy. Plus, accessibility issues can prevent people from using public transit even when it does exist. “If you're in a wheelchair or even using a cane, and you hear Watch your step while exiting, then that kind of just means you're screwed,” Kenney explains.
Above all, Kenney appreciates that public transit restores some of the freedom her condition has stripped from her. “One thing I love about public transit,” she says, “is that I get to do this by myself.”