Hi Everyone,
I want to say Thank you for being here tonight and for giving me the chance to share something deeply personal—what it’s like to live with seizures and the aftermath that follows. This is a part of my life that affects me every day, in ways both visible and invisible. It’s hard to put into words, but I hope by sharing my experience, I can help you understand not just what I go through, but what many others living with epilepsy face as well.
To start, I want to ask you to imagine something. Picture your brain as a lightbulb, shining brightly when everything is working well. Then suddenly, without warning, the light flickers. It dims, it flashes, and then it goes out completely. For those seconds—or sometimes minutes—you’re plunged into darkness. That’s what a seizure feels like for me.
During a seizure, I lose all control. Sometimes my body might shake violently, my muscles tightening like they’re caught in a vise, or I might simply freeze, staring blankly into space. It’s not just my body that’s affected—my mind is trapped too. It’s like being locked in a room with no way out. I can’t speak, I can’t move, I can’t even call for help.
When the seizure finally ends, you might think, “Oh, It’s Over Now.” But for me, it’s not. In many ways, the aftermath is just as challenging as the seizure itself. Imagine you’ve been running a marathon you didn’t sign up for. Your body is shaking from exhaustion, your heart is pounding, and your legs feel like jelly. Now add a splitting headache and a fog that clouds every thought. That’s what the recovery feels like.
My brain takes time to reset, and during that time, even the simplest tasks—talking, standing, thinking—can feel impossible. My muscles ache from the tension, my head feels like it’s been hit by a hammer, and my mind struggles to keep up with what’s happening around me. It’s a kind of exhaustion that no amount of sleep can fix.
But it’s not just the physical toll. Emotionally, seizures leave their mark too. There’s fear—fear of the next one, because I never know when it will come. There’s frustration—frustration at my own body for betraying me. And then there’s the embarrassment, especially if it happens in public. Imagine collapsing in front of strangers, unable to explain yourself, and waking up to a crowd of concerned faces or people whispering. It’s not a good feeling.
I’ve tried countless times to explain what this is like to people, but it’s hard. It often feels like I’m speaking a different language, one that only a few people understand. I use analogies, like the flickering lightbulb or the frozen computer, to try and paint a picture, but even then, I can see the confusion or uncertainty in people’s eyes. And I get it—if you’ve never experienced it, how could you truly understand?
So, let me try to make it even clearer. Imagine your brain is your personal control center. It keeps your thoughts, your movements, and your emotions in check. Now imagine it suddenly short-circuits. You’re still there, but you’ve lost the ability to connect with the world around you. That’s what a seizure does—it disconnects me from myself and from everything around me.
When I wake up from a seizure, I feel vulnerable. Sometimes, I don’t know where I am or what just happened. My mind is foggy, like a radio stuck between stations. I might slur my words or struggle to remember basic things. It’s disorienting, and it can be scary—not just for me, but for the people around me too.
This is why understanding is so important. If you ever see someone having a seizure, the best thing you can do is stay calm. Make sure they’re safe—move anything dangerous out of the way, and if they’re on the ground, gently turn them onto their side. Don’t try to stop the movements or hold them down—that can cause injuries. And please, don’t put anything in their mouth. That’s a myth, and it can do more harm than good.
After the seizure ends, give them time. They might need a few minutes—or even hours—to feel like themselves again. Offer them kindness, not panic. A glass of water, a quiet place to sit, or just a reassuring voice can make all the difference.
And if you’re not sure what to do, ask. “How Can I Help?” is one of the most powerful things you can say. It shows you care, that you’re willing to support them in whatever way they need.
For those of us living with epilepsy, the challenges go beyond the seizures themselves. There’s the unpredictability—never knowing when the next one will strike. There’s the stigma—feeling judged or misunderstood because of something we can’t control. And there’s the isolation—knowing that no matter how well we explain it, most people will never fully understand what it’s like.
But that’s why I’m here tonight. By sharing my story, I hope to bridge that gap. I hope to give you a glimpse into my world and help you see what it’s really like to live with seizures. It’s not just about the moments when my body shakes or my mind goes blank—it’s about the resilience it takes to get back up afterward. It’s about finding strength in vulnerability and hope in the face of uncertainty.
So, thank you for listening. Thank you for taking the time to understand. Your compassion and willingness to learn mean more than I can put into words. Together, we can create a world where people like me are not just seen but truly supported.
Thank you.
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