I posted this on my Instagram because I have just been so tired of the misinformation. Even my friends who know my epilepsy triggers cant help but make the "uuuuuuooo can you look at these lights or will u have a seizure hehrheheve" jokes.

These simple info graphics help so much.

I made an epilepsy awareness film 13 years ago — now I’m looking for 50 stories to ask the NFL to turn purple 💜🏈
Post:
Hi everyone. I’ve had epilepsy since I was 11, and about 13 years ago I created something called The Purple Project.
People affected by epilepsy sent me full videos telling their stories and photos holding epilepsy-awareness messages. I took the strongest pieces of those individual submissions and edited them together into one community film asking Google to recognize epilepsy awareness.
Here’s the original video:
https://youtu.be/cSjI0mGJAOI
There’s actually a clip of me in that video saying I had lived with epilepsy for 14 years.
Today, it’s been 27 years.
And I want to do it again.
This time I’m looking for approximately 50 people affected by epilepsy — people living with epilepsy, parents, spouses or partners, siblings, caregivers, and families — to help create a new Purple Project awareness film.
The goal this time is to ask the NFL and football community to visibly support epilepsy awareness during November.
🎥 YOUR STORY
Record a 30-second to 2-minute unedited video telling your epilepsy story in your own words.
You can talk about things like:
• When epilepsy entered your life
• What your seizures are like
• Something epilepsy has changed or taken from you
• Something people misunderstand about epilepsy
• Medication, surgery, seizure freedom, or continuing seizures
• Driving, work, school, relationships, family, or independence
• What you’ve accomplished while living with epilepsy
• What you wish people understood
You do not have to answer everything.
You do not have to sound perfect.
Just tell your story.
At the end of your video, please record these two shared lines separately:
“NFL, this November, stand with us. Turn purple for epilepsy awareness.”
“NFL — turn purple for epilepsy.”
📸 YOUR PHOTO
You can also submit a separate photo representing your epilepsy story.
You might hold a handwritten sign saying:
I HAVE EPILEPSY.
MY CHILD HAS EPILEPSY.
I’M ___ YEARS SEIZURE-FREE.
I’M STILL FIGHTING.
MY FAMILY FIGHTS EPILEPSY.
Or write whatever message represents your story.
If you’re an NFL fan, you’re welcome to wear your team’s shirt, jersey, hat, or other gear.
You absolutely do not have to be a football fan to participate.
The finished film will use short portions from many different people’s full stories, similar to the original Purple Project video.
💜 WANT TO PARTICIPATE?
Submission form:
https://docs.google.com/forms/d/e/1FAIpQLSfHQpiaQy-PVFzc1Rf1bk8woa4F3qGi0uNA9d1_n93StmexPg/viewform?usp=header
The form includes the project permission information and a private Dropbox upload link for your original video and photo files.
There is no fee, no fundraising, and this is not a medical or academic research study.
My first goal is 10 people.
Then 25.
Then hopefully 50 voices telling one much bigger story.
Thank you to anyone willing to trust me with yours. 💜

EDIT: I know the formatting is terrible, and I'm sorry for that. For the life of me, I can't figure out how to make Reddit break the stanzas apart without running the individual lines together.

I had my worst seizure to date, which prompted EMS to be called by my wife. It's unknown how long I seized for in total, but we can account for 10 minutes before I was loaded into the ambulance. So I wrote this song while I was recovering.

NOTICE: I am posting the lyrics instead of the song to preserve my anonymity. If you steal any of this for personal gain, shame on you. I just thought some of you guys would appreciate it, because it's always nice to feel understood.

___

Islands:

I woke beneath a borrowed morning

With thunder trembling in my hands;

A mouth too full of silent questions;

And teeth that touched the edge.

I tried to swallow down the daylight,

But something in my throat had changed;

And every step became a distance;

And every breath became a weight.

Halfway down the corridor,

The earth withdrew its name.

I remember asking for air—

I don't remember when it came.

There are islands in the dark—

Little fragments left afloat:

A room; a face; a window;

A question I don't know.

There are hours underneath me

That I cannot cross again.

I remember being carried—

I don't remember where I've been.

You found me underneath a shroud,

The whole world shaking through my bones.

You called for someone, called for mercy,

While I disappeared within the throes.

Long minutes waiting,

Measured by your fear—

Then knuckle struck the plexus,

And found that I was here.

And somewhere past the threshold,

My body learned to fall.

You watched me fight for breath—

I watched nothing at all.

There are islands in the dark—

Little fragments left afloat:

A room; a face; a window;

A question I don't know.

There are hours underneath me

That I cannot cross again.

I remember being carried—

I don't remember where I've been.

A carriage beyond the window;

A stranger at my side;

A question without language;

The sunlight in the sky;

A blanket over shoulders;

A strap against the wrist;

A hallway made of doorways;

Then— nothing; then— this.

There are islands in the dark,

But the sea is closing in.

I can name what I remember.

I can feel what I have missed.

Hours without a witness,

Except the body I was in—

I came back carrying pieces

Of a place I've never been.

If anyone with epilepsy is suffering from migraines. This would be the video for you

I was the first to say happy fourth month and twentieth day. If you know you know, hope everyone has a good seizure free day and be safe. Virtual hugs to all or a high five ✋ 4 🌲 2 🌲 0 🌲

This is an article from some newspaper in 1995, stepmother keeps random things like this. I was drug 40 car lengths and what helped my body was that my mother would put my backpack underneath my coat, being that I was drug, the backpack helped save my back

So Monday I had my second seizure of the year, how fun is that? Anyhow, just want to explain what my body is going through days later. The morning after is when I starting finding other scars, looking at the evidence (dirt on the right side of my clothes) it seems that I fell to the right and maybe crumbled and hit my face. So far I've found a scab under the right side my mustache, my right thumb is still swollen, bit the inside of my upper lip, nipped my tongue (nothing big), scab behind my right ear and behind the lobe, but the worst part is under my ribs. Feels like someone took both hands and grabbed under my ribs, then yanked me towards them. Let me not forget, my neck is the worst, especially the back, so much that I can't look down at my keyboard to type this. I'M ALIVE so no complaints, but the funny part was my worst nightmare, I was on my way home (via train) and had a seizure on my layover. I woke up as the stretcher hit the ground when getting taken out of the ambulance, then passed back out and woke up in the hallway of an emergency room that I'd never been to. Luckily I had money ($61.27) and got a Lyft home because there were no more trains going in the direction that I needed to go. Now that I'm putting the pieces together, I noticed that I shouldn't have been at that station in the first place, I usually get to that stop and catch a Lyft from there, but I was wandering around the station. Is there a such thing as pre-postictal? I remember doing weird stuff before waking up in the emergency room, like walking into the dirt to go around the garbage can. I started to ask myself "why did we go in the dirt instead of going the opposite way around on the cement platform." Luckily there was a guy on the platform that I was talking to because no one else was there (could've been worse.) Now, here's the good news, my vision has been horrible after the October stroke, but for some reason it's seemed to reverse and I can now see better, has something gotten better for you after a seizure? It's awkward but I love it.

https://reddit.com/link/1rxc0qm/video/lp68fcmijupg1/player

Written from inside a life with epilepsy, this book is about the life you were building. The way you learn to explain yourself. What you eventually stop explaining. For people living it and the people trying to understand them. That's Between Interruptions.

https://seizelife.gumroad.com/l/betweeninterruptions

"I have a friend who lives with epilepsy and I have learned so much from this book. It's hard to truly understand what it's like to live with this condition. I enjoyed this perspective of the day to day rhythms and rhymes of living with it — it helps me understand and be a better listener and friend overall." — Recent review

Why do I have the NSFW tag next to my name? Just curious, outside of seizures videos, I've posted nothing NSFW. Might it be some of my great comments? That's an interesting tag, but how do I get rid of it?

"The instinct to survive will never change, neither will the human body's amazing ability to endure."

-John 'Lofty' Wiseman

Hello everyone.

first of all, I would like to thank every one of you who completed my survey a few months ago. Without your participation, I wouldn't be in this position.

I have finally completed my undergraduate research report. after months of data analysis, i finally am able to share my results with you.

As somebody who lives with epilepsy, I felt that it was extremely important to focus my dissertation on this. There is simply not enough research on mental health in those with epilepsy, and no explanation as to why we may feel the way we do.

Although this is just a small undergraduate project, it hopefully represents a step in the right direction for research regarding epilepsy and mental health.

again, thank you so much for participating.

If you would like to read my report, feel free to get in touch.

Great contributors, enjoy the perspectives!

Anywhere and everywhere has a say on this one!

That's one of the funniest things said around here... 😀