Four Years Seizure-Free

A personal story on a special anniversary.

Greetings, Readers, and Happy New Year!

Something that you may or may not know about me is that I have epilepsy. And as of today, January 1st, 2025, I am four years seizure-free!!!!!!!!!!

I don’t know how to express how good and how freeing this feels. So — I’ll tell you the story.

This particular journey began when I was around 14 years old. Truthfully, I don’t know exactly when it began because my seizures tend to happen while I’m asleep.

I did suspect something was amiss before I received any diagnosis. There were mornings when I’d wake up for school with a blazing headache, random bruises, full-body soreness as if I’d completed a workout, and an injured tongue — as if I’d bit myself. I didn’t know what it meant. And I didn’t particularly want to.

Then came a fateful teenage slumber party. When the morning came, my bedmates told me I had convulsed and foamed at the mouth in my sleep, as if I was possessed. (I believe we’d watched a horror movie the night before). I convinced myself — and my friends — that I’d just had a weird dream and asked them not to say anything. At that age, any difference felt like terrible shame.

My sleepover companions didn’t say a word — until it happened again. The weeks and months and years that followed were full of doctors, prescriptions, drug side effects, and tests of brain function. I wore electrodes on my head and stared into flashing lights. The experts concluded that I was having seizures in my sleep — but no one could say why. (They still can’t).

Though unexpected, the epilepsy diagnosis made sense to me as a teenager trying to understand why I felt so lonely, so nervous, and so strange. Of course there’s something wrong with me, I concluded.

My body’s terrorism against itself continued for more than 15 years. These episodes occurred every six months or so, often just long enough for me to cease my evening pleas to any higher power listening, “Please, please let me not have a seizure tonight.” And the cycle would begin anew.

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Quick Interlude: Seizure First Aid

One of my missions in life is to raise awareness about seizure first aid. Seizures impact one in ten people at some point in their life.

First, let’s dispel a rumor: it’s impossible to swallow one’s own tongue. If someone is having a seizure, DO NOT put anything in their mouth.

Second: there are many different types of seizures, and they don’t all look like convulsions. Absence seizures appear as if the individual is staring off into space. Their non-responsiveness and lack of memory are clues that they’ve experienced a seizure.

The first most important thing to do if someone is having a seizure is to put them on their side, in the “recovery position.” You want to make sure their airway is clear, and that they are away from any objects they might knock into during the event. That’s the primary danger involved with having a seizure.

The second most important thing to do is time the event. According to the CDC, you should call 911 if a seizure lasts more than 5 minutes. Personally, I tell friends to call for help if I have a seizure lasting more than two minutes.

After the seizure is over, the individual will be emotional and confused. They will need support getting home.

Learn more about seizure first aid here.

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Seizures are a strange thing for me to reflect on, because I have no memory of the events. The first thing I do notice post-seizure is my lack of memory. “How did I get in bed? What did I do last night? When did I wake up?” And sometimes, “Where am I?” I feel supremely vulnerable, confused, and emotional. It’s known as a “post-ictal” state, and it feels something like a brain rebooting after being forcibly shut down.

It takes a half hour or so for my memory to return — though I can’t say my conception of time in that state is any good. It’s as if one moment, I reach into my memory and find nothing recent, then I blink, and it’s back — all the details of the evening prior are reachable once again. If it weren’t so frightening, I could imagine the experience being very interesting.

The days after a seizure are always the same: I speak with a lisp due to the common injury on my tongue — the result of jaw clamping; my body is sore from my head to my abs to my calf muscles — the result of more clenching; I sleep as if I got no rest the night prior; and I feel deeply depressed. The experience of losing control and brutalizing myself is terrible. And for a long time, it felt like a shameful secret.

Imagine moving through the world with a black eye that you gave yourself in your sleep — probably. That’s what it feels like.

By the time I reached my 30s, I’d begrudgingly accepted that seizures would always be part of my life. That is, until early 2020. It was a weird year for so many reasons. One of which was my job on a competitive political campaign in northern Illinois, which I was completing remotely from Ojai, CA.

It was a little before noon when I got hungry for lunch — I’d began my day early. There was pizza dough in the fridge from the night before, so I preheated the oven and began grating a block of mozzarella cheese.

And then… I was sitting on my couch. A woman was staring at me, talking to me, asking if I knew who she was. And I didn’t. I felt like I should — but I couldn’t retrieve the information. And then, I blinked, and it came back: this woman is my next door neighbor. In an instant, I knew everything I’d forgotten. My brain rebooted.

My brother and neighbor filled in the blanks: I’d fallen on the kitchen floor and had a seizure. The evidence was in the mozzarella cheese scattered all over the tile — and the bite on my tongue.

That incident changed my life in the near and long-term. I couldn’t drive a car for six months. And after I stopped feeling sorry for myself, I got really into biking around Ojai. Now, imagine if I didn’t have remote work? Or health insurance¹? Luckily I had both.

It took a little time, and unfortunately, one more seizure, to get to my current medication, which I credit with my four-year respite. But I’m under no illusion that I’m cured. For now, being able to go to sleep without fear of injury is a gift.

When I look back on the early days of my diagnosis, I have tremendous empathy for the teenager I once was. The girl who believed epilepsy was something shameful, or a sign of some horrible wrongness inside. I know now that the only wrongness is in that belief.

And for anyone out there reading my words and recognizing their own struggle with chronic illness, or your own struggle with shame… this is for you. May we all have a happy and healthy New Year.

1. Prior to the passage of the Affordable Care Act’s in 2010, health insurance companies regularly refused to cover people like me (anyone with a pre-existing condition), or, they made coverage prohibitively expensive. This is no exaggeration: the ACA changed my life. Thanks Obama. 🙏