I don’t talk about this much, but I think it’s time.
This is what someone with epilepsy looks like.
I live with something called simple partial epilepsy, which are also known as focal aware seizures. It means I have seizures where I don’t lose consciousness. I’m aware of what’s going on, but my brain does something very strange and disruptive. My seizures were worse when I was in my 20s, they went away and reemerged some 40 years later. When I went to the neurologist, I told him that I was having auras, BAD auras, but without a seizure. He explained that I am experiencing a different type of seizure, but that now I am completely conscious when I have them. I feel a sudden wave in the pit of my stomach that wells up, confusion, a flash of fear, or déjà vu. Sometimes I can’t speak for a moment, or I’ll zone out and hear the world around me like I’m underwater. I know what’s happening – I’m right there, but I can’t always respond the way I want to.
What makes it harder? I don’t just have one seizure here or there; I have cluster seizures. That means they come in groups. Instead of one and done, I might have four or five over a few hours or a day. I’ve even had them come back to back to back, again and again, over the course of an entire week. Imagine trying to plan your day, your writing, a trip, even a conversation, when your brain may or may not go haywire in short bursts over and over again. It’s exhausting. It’s frustrating. It’s invisible to most people, and I think that’s what makes it lonelier.
The hardest part isn’t just the seizures themselves—it’s the medication.
Let me be honest: I hate how these meds make me feel.
I’ve been on multiple ones over the years. They slow me down mentally, physically, and emotionally. I feel like I’m walking through molasses half the time. The creative thoughts that used to come like lightning bolts? Now they sometimes fizzle out before I can grab them. My memory, which was never all that great as I began aging, but was still sharp when it came to movement memory (I love dance), putting fashion pairings together, and researching travel options and itineraries, now feels like it’s missing puzzle pieces. I have to ask the same question over and over (or forget the question altogether). I’m a morning person, and the energy I once had in the mornings? Sometimes that’s the hardest part of the day. There are days when I have to sit down and talk myself into actually taking my daytime medication because I feel like the meds are worse than the seizures.
And it’s not just tiredness. There are days I feel like I’m in someone else’s body entirely, like I’ve lost my rhythm, my fire, my ease of movement and thought. But the alternative – untreated seizures just isn’t safe. I was told that even though I think I can live WITH them, that they’ll progress and get worse without medication. Wo here I am… navigating both the condition and the side effects of treating it.
But here’s what I want you to know:
I’m not stopping.
I’m not quitting doing the things I love. I’m not retreating from the world. I’m not giving up travel, beauty, creativity, movement, or joy.
That’s why you’re seeing me travel more lately. Why you see me at new destinations, trying new restaurants, going to shows, or packing up cute spa products into a suitcase. It’s because I refuse to let this thing shrink my world. If anything, it’s done the opposite. It’s lit a fire under me.
Because when you live with something that can interrupt your day at any moment, you realize how precious every moment really is.
I don’t say this for sympathy, honestly, that’s the last thing I want. I say it for understanding. And maybe to reach one person reading this who thinks they’re the only one trying to hold on to their identity while their body (or brain) seems to be doing its own thing.
Living with epilepsy doesn’t mean I’m broken. It just means I have a different rhythm, and I’ve had to learn to dance with it.
So, if you ever see me a little quiet, a little slower to respond, a little foggy-eyed, it might be one of those moments. I might excuse myself and go sit down for a bit (or head to the nearest ladies’ room). And that’s okay. I bounce back. I always bounce back.
Thank you to those who support me, love me, and help me stay grounded on the days when I feel like my body’s trying to sabotage me. And thank you to the friends who travel with me, who wait patiently when I need a moment, who know how to spot my “episodes” without making it a thing. You help me feel safe enough to keep going.
To anyone else out there dealing with epilepsy, or any invisible illness: you’re not alone. You’re not lazy. You’re not weak. You’re not a burden. You are adapting—sometimes daily—to a reality that most people never see. That takes strength most will never understand.
I’ll keep living, loving, laughing, writing, packing, flying, styling, and sharing… with epilepsy in the backseat, where it belongs.
Because I’m still me. Slower some days, foggier others—but still me. And I’m not going anywhere.
Epilepsy Awareness & Support Resources
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Epilepsy Foundation
The largest U.S.-based epilepsy nonprofit. Offers education, community forums, seizure first aid, treatment info, and a 24/7 helpline: 1-800-332-1000 -
CURE Epilepsy (Citizens United for Research in Epilepsy)
Focused on funding research to find a cure. Great for reading about cutting-edge treatments and personal stories. -
FACES (Finding A Cure for Epilepsy and Seizures)
Based out of NYU Langone. Offers patient stories, education, and research info. Especially good for families and caregivers. -
Seizure First Aid Certification
A free online training course that teaches people how to recognize and respond to seizures.
NOTE: It took me a long time to build up the courage to write this. I was afraid that the many brands and sponsors that I work with wouldn’t want to work with me if I “outed” myself. That may happen, but if it does, I’ve come to realize that helping someone who may be struggling with a silent disease like mine is worth much more than a tube of lipstick or a pair of flip flops.
