Most folks think you’re born with epilepsy. For me, I didn’t have any issues until I was 16 years old. I was playing ‘max pain’ on playstation when my body started randomly twitching. It was a saturday and I was supposed to mow the lawn. My father thought I was faking it to get out of chores. My mom realized I wasn’t when she witnessed me fall down and my eyes rolled in the back of my head.
I thought that was a one off kind of thing. I eventually got my first job shortly after, at 16 years old at a sea food restaurant. I remember cutting limes when my epilepsy started acting up again: every other second I’d have a spastic twitch. It was incredibly awkward and I didn’t know what was happening. It started out as my arms jerking to my sides as I’d bend at the hips abruptly. It worsened to the point where I’d drop straight to the ground.
I was fired from that job.
My doctor told me to see a neurologist. I did, and he told me I had epilepsy. I tried to explain to him he was wrong because I didn’t drop to the floor and have a big seizure like you see on TV. He did the best he could to politely explain to me that I do in fact have epilepsy.
I remember the first time I had a big seizure like you see on TV. It’s sort of a longer story than you’d think. Right around the same time the epilepsy manifested in my body I started having these severe pains in my jaw. It wouldn’t last long but it was the worst pain I ever had.
This jaw pain graduated into cluster headaches, literally the worst pain known to man. The doctor gave me a ton of pain pills to deal with it. The pills didn’t help with the pain but they made me feel good, so this started a several year addiction which worsened the epilepsy.
This is what led to my first big seizure: typically epilepsy for me means jerking and twitching awkwardly for 12 or so hours. When I was in my early 20s this was happening and I popped a pill because I wanted to… because fuck it I hated my life. This sent me into the seizures you see on TV.
I remember one moment sitting at the kitchen table, and the next moment waking up on the floor as if waking up from a nap. Apparently I was moaning and frothing at the mouth but I don’t remember this. Frankly I remember feeling fine, although paralyzed. Next thing I know I black out again.
As weird as it sounds I remember having an out of body experience. I remember watching ‘me’ walking from one room to another and asking about why there is an ambulance and firetruck outside the house. I think I remember asking something like, “are they here for me?”
I ‘popped’ back into my body and when I did I couldn’t speak. I remember seeing my mother petrified, and several uniformed folks in my house. I am not a tough guy but I had a hesitation of taking them down because they were in my house and telling me what to do… “sit down” “calm down” etc. But I had enough of a whereabouts to know it was my house. I still felt as though I’m in charge and watch your fucking tone. At the same time I wanted to chill everyone out but I couldn’t speak. I understood what everyone was saying but I couldn’t speak. In my mind there wasn’t an internal English dialogue either, yet I still was able to comprehend the situation.
As I came to, I realized everyone there was there to help me. I sat down and eventually left in an ambulance.
I’ve been to the ER a few times. The worst was actually due to the cluster headaches but the more dramatic story is from when I busted my head open from another seizure story.
Like I said earlier when my epilepsy acts up it typically looks like I’m jerking and twitching awkwardly for 12-15 hours. Fish out of water kind of thing. If I lay down and stay calm I can wait it out and I’ll be fine. If not I may go into a full on blown out seizure like you see on TV (tonic clonic seizure).
One day when this happened it was really bad. I don’t even know what happened. I remember sitting down in my ‘man cave’ watching tv, trying to wait it out. This is what I always do to alleviate the epilepsy.
So one minute I’m sitting down, the next minute I wake up screaming and folks are telling me “it’s okay” and to calm down. There are paramedics all around me and my mother is holding a towel to my head. I don’t know up from down. Someone says I cut my head “pretty good.” I reply to him but it’s more of an automatic response, I don’t realize just how bad I look. I actually don’t feel the pain from it either, I’m just trying to get my bearings straight.
Someone is holding my hand and pops my finger with something, so I pull my hand away and ‘death stare’ that dude. Everyone looks at me like they’re gonna jump on me and remind me “everything’s okay.” I’m still trying to shake the fog from my head. I realize it’s a paramedic taking my blood so I hand him my hand back. I start to realize I had a seizure and I need to play by the rules.
It’s embarrassing. I know I shouldn’t be embarrassed but walk in those shoes then let me know how you feel.
I’m in the ambulance now and my shirt is covered in blood. I don’t think my shirt was cut off I think I took it off but I don’t remember. I do remember thinking to myself this wasn’t my first time being in an ambulance and since I’m a car guy I wanted to take this opportunity to look around and see how it was set up. I don’t remember what it looks like on the inside but I remember the sirens and how it creeks a lot.
At the ER I needed several stitches and was sent on my way. When I got back home that night my blood clotted and dried on the floor of my man cave. It smelled exactly like iron. If you’ve ever played the guitar with really old strings, or worked with old nuts and bolts then smelled your fingers you know exactly what I mean.
There was blood everywhere. There was at least half a gallon of blood on the ground, and it was thick like how spilled oil paint stacks on itself. There was also blood sprayed on the wall which I am still yet to get the stains out. I don’t know how that happened it’s weird. I must’ve fallen, split my skull, then stood back up, spraying blood on the wall through my scalp. I really don’t know because I don’t remember.
We haven’t even talked about my cluster headaches yet….
Cluster headaches are the worst thing known to man. I have a serious issue about this. I was raised Lutheran Christian. I am confirmed in the faith. I went to a private christian school before I went to high school. I know the Bible like the back of my hand. This is what pisses me off.
Jesus Christ had 1 miserable day. On top of that he asked his father (God) to get him out of the crucifixion. His one day of misery. Did he not know of cluster headaches? I would absolutely trade 1 day of misery over years of horrendous despair. Nobody can understand the pain of a cluster headache. Nail my hands into a 2×4 and I’ll laugh at you. You have no idea where I’ve been.
Cluster headaches take you on a ride. It starts with the physical pain then to the psychological torture. This is where it gets it’s pseudonym of suicide headaches. You can only take it for so long before you can’t help but to at least consider that suicide is your only recourse. If a spy takes his suicide pill to save himself torture do you consider him suicidal? Understand? The folks that killed themselves due to cluster headaches were not suicidal. They needed to end the suffering. God bless them.
To anyone who says suicide wasn’t the answer, fuck you you goddamn piece of shit. You’re a selfish asshole. I get it. Suicide sends the suffering to family members and those who loved them. What you assholes don’t get is the suffering that that person went through for so many years. How dare you ask someone to live in such torture? You just don’t get it. You never will. This is why you suffer internally: because you’re blind to reality.
This is my life. I’m still here and I have zero intentions of suicide. But for those who’ve taken that route due to headaches, may you rest in peace. I will speak the truth in your memory. I love you.
Cathartic Rambling 