My Journey – Part One Living with Epilepsy and Finding Strength
My name is Luke, and this is my journey.
I was born with epilepsy. Diagnosed at the age of three, it’s been with me for as long as I can remember. Growing up with it felt like living in a cage – like a prisoner inside my own body. While most kids were running around without a care in the world, I was dealing with up to 100 seizures a day. It wasn’t just hard. It was isolating.
Because of my condition, I didn’t get to experience a lot of the freedom others take for granted. I wasn’t allowed on buses until I was 18, and I didn’t take a train until I was 21. These small things, things that seem normal to everyone else, were big steps in my world.
But things started to shift when I hit 18. The smaller seizures that had followed me every day of my life began to fade. It was the first time I felt a glimpse of what life could be without epilepsy constantly hanging over me. Then, at 22, I was given a new medication. For the first time ever, it worked. My bigger seizures stopped, and for a whole year, I was seizure-free. A whole year. That might not sound like much to some, but to me, it felt like freedom.
But epilepsy is unpredictable. My body started to fight the medication like it always does. After that year of peace, the seizures came back. That’s the part that hurts – getting your hopes up only for your body to betray you again. Every time I try a new med, I go in with low expectations because I’ve seen the pattern too many times before.
But even when epilepsy tries to drag me down, I don’t stay there.
At 21, I joined the gym. It started as a way to manage my stress and anger – emotions I used to bottle up way too much. But it quickly became more than that. The gym gave me control. It gave me something epilepsy couldn’t take away. The meds I was on made me gain weight, and I hated how I looked. But now, I’m losing that weight, gaining strength, and feeling better about myself every day.
The gym didn’t just change my body. It changed my mindset. I’m more confident. I’m happier. And for once, I feel like I’m building the life I want, not the one epilepsy forced on me.
This is my journey. It’s not always easy. It’s full of ups and downs, of fights and setbacks. But I’m still standing. Still pushing forward. Still finding new reasons to keep going.
And that is only the beginning.
My Journey – Part Two: Holding On to Hope
As I got older, I started to hope more. Hope that maybe one day, my epilepsy would go away. That one day, I’d be free. But the truth is, my body always seems to fight back against the very things that are meant to help me. Every time a new medication brings a little light, that light always seems to flicker and fade. Still, I hoped. I wanted to believe.
But with hope also came anger.
Anger that I couldn’t do what others could. That I couldn’t drive. That I didn’t feel like a “normal” person — whatever that even means. Epilepsy has a way of making you feel like you’re on the outside looking in. Like life is happening for everyone else, and you’re just trying to keep up.
There were moments where I felt like no one. Like nothing. But even in those darkest thoughts, there was always a spark deep down in me saying, “Don’t give up.”
Because I never did.
Epilepsy never pushed me down hard enough to stop me from getting back up. Every time I fell, I stood. Every time I was knocked off track, I found my way back. This isn’t just about surviving with epilepsy — it’s about fighting it, every single day.
At one point in my journey, I had a VNS implanted — a Vagus Nerve Stimulator. It’s a small battery placed in my chest, with a wire that runs up to my brain. It sends tiny electric pulses to help prevent seizures before they even start. It’s not a cure, but it’s another weapon in my fight.
The battery needs to be replaced every few years. The doctors use a special device, placing it over the battery in my chest to read the data — it shows when the VNS was triggered, which means a seizure might’ve been coming. They can tweak the strength of the pulses, adjusting the settings in the hopes of making it more effective. It’s strange to think of a machine helping me battle my own brain, but that’s where my life is.
It’s not easy, carrying all this. The weight of hope, the frustration of setbacks, the constant unknown. But still… I carry it.
And it’s far from over.
My Journey – Part Three : Alone, But Never Broken
School was never easy for me.
While other kids were out having fun, making memories, and building friendships, I was stuck in the shadows — not because I wanted to be, but because epilepsy pushed me there. I didn’t fit in. I didn’t feel like I could. And when people don’t understand what you’re going through… they either ignore it, or worse — they use it against you.
The bullies? They saw my epilepsy as an easy target. Just something to mock. Something to laugh at. But what they never saw was the pain underneath. The strength it takes to get out of bed every day knowing you might have a seizure. The courage it takes to go into school pretending everything’s fine, even when your body and brain are working against you.
I never had a big group of mates. I didn’t go out like most people my age did. Epilepsy made me cautious. It made me feel like I didn’t belong. But through it all, I’ve had one true mate — someone who stuck by me through thick and thin. And sometimes, having that one person is enough to remind you that you’re not as alone as you feel.
Even now, at 22, I still find it hard to make new friends. Trust isn’t easy for me. I’ve been let down before, judged before people ever took the time to know me. But I’m not giving up. I’m learning that trust takes time, and real mates are rare — but they’re out there.
That’s why I focus on what I can control.
I focus on me.
The gym is where I put my energy now. Every rep, every drop of sweat, every bit of progress — that’s mine. It’s where I’m becoming stronger and fitter, not just in body, but in mind too. I’m not just building muscle. I’m rebuilding my confidence, my self-worth, my future.
I’m not looking to be like everyone else anymore. I’m just looking to be me — and maybe along the way, find a few genuine people who accept me for that.
This is my journey so far.
Still standing. Still fighting.
Still growing.
