What living with epilepsy has taught me about freedom
I don't really know how to write this without making it sound like I'm asking for sympathy so I'll just tell it as it happened
When I was 12 I had a bicycle accident and hit my head hard enough to black out
A man whose house I was lying outside saw me and brought me inside. When I came around I couldn't see properly but I could answer questions. He happened to know my father and called him
We went to the hospital and had an MRI and CT scan. Nothing unusual showed up so we didn't think much of it
Two years later when I was 14 things started getting strange
I started having what I eventually learned were aura seizures
They are difficult to explain because they weren't like simply passing out. They would begin with this overwhelming flood of emotions that I couldn't understand completely It felt like Fear, Guilt, Sadness, over sensation all wrapped Together. Then I'd get an intense feeling of deja vu about whatever was happening around me
Everything would feel like it had already happened
Then came this horrible sensation in my stomach followed by violent coughing and sometimes vomiting
I still remember the first one clearly
I was in 10th class during mathematics. We were learning geometry and suddenly i started feeling a massive wave of fear making my chest heavy. I looked at the teacher and had this incredibly strong feeling that he had already taught this exact thing before and the sensations on my skin felt like it had been turned to a 1000. My nose started feeling heavy and the tip aching in a weird way.
It was so intense that I couldn't sit upright. I put my head down on the desk trying to make it stop and then the coughing started
I ran to the washroom without even telling anyone what was happening
I ended up vomiting and ruining my uniform
As the seizures became more frequent I got good at hiding them
I would sweat like crazy but I learned how to sit through them and pretend everything was normal
But people noticed anyway
I had to stop swimming because of the seizures i loved swimming so much i could spend hours playing in the water. I became less social. Other students started giving me names like Sweaty Sam, Pukey Pande and sometimes would even ask me hey have seen me do this before.
I don't really blame them for not understanding what was happening
But it changed me
Over the years I became more and more confined to my house. I lost interest in a lot of the things I used to enjoy and became extremely introverted
One of the biggest things epilepsy took from me was freedom
I couldn't just decide to go somewhere by myself without thinking about what might happen
But I eventually learned something that made a huge difference
The buddy system
After 10th standard when I went to college I managed to find two friends who knew what I was dealing with
And honestly it didn't matter to them
Our vibes just matched
They didn't treat me like I was broken or like I needed to be kept away from everything. They simply knew what could happen and what they needed to do if it did
I would give almost anything for those two friends because they gave me something I desperately needed
A little bit of freedom
I learned that I didn't necessarily need someone watching me every second
I just needed at least one person with me who understood what was happening
Then i enrolled for architecture after 12th.
The sleepless nights made everything considerably worse
One day I was at home lying in bed playing Fortnite when I felt another seizure coming
By that point it was almost routine so I thought I'd just wait for it to pass
Except this time it didn't
It kept getting stronger
I started feeling like something was approaching me or standing just outside my peripheral vision. Whenever I tried to look at it directly it seemed to move further away
Then everything went black
My mother noticed something was wrong and came into my room
I was having a full grand mal seizure
She later showed me the video she had recorded while trying to keep me on my side. My heart just dropped that day thinking my Mom had to see me like that
I regained consciousness maybe 30 or 45 minutes later
Everything felt completely different
My mouth had this strange feeling, everything tasted a bit bland and tasteless that day and the sweatness of anything would feel really sharp and my head was pounding like hell
That eventually became one of the reasons I dropped out of architecture
At my worst I was having around two grand mal seizures a month along with aura seizures almost every week
And I've noticed a pattern that has been pretty consistent with me
I get the aura first
Then if I'm unlucky the aura turns into a grand mal seizure
That knowledge has actually helped me prepare for the possibility of one happening
Technology has helped too
I use the emergency information and emergency contact features on my Android phone
I've put my condition in the medical information section and written instructions about what people should and shouldn't do if they find me having a seizure
For example I specifically say not to put anything in my mouth and not to try to make me smell something a common belief in india to make the person having seizures smell a shoe sole or onion
I also have my parents and brother listed as emergency contacts so someone can get to them from my phone without needing to unlock it
On my Samsung phone I also have the SOS feature set up
If I'm alone somewhere and I feel a seizure coming I can trigger it and have my location sent to the people I need
Then I try to find somewhere safe and dry
It doesn't have to be somewhere comfortable
I've literally thought about the possibility of ending up on a sidewalk or on the floor of a shop
I just need somewhere where I'm less likely to hurt myself
I can then open the medical information section from the emergency screen and keep the phone somewhere visible while I wait for help
The biggest thing I've learned is that freedom doesn't always mean doing everything alone
Sometimes freedom means knowing that if something goes wrong there is a plan
Recently my doctors also gave me a rescue spray
I believe it's either diazepam or lorazepam but honestly I need to check which one it actually is
I'm supposed to use it when I feel the seizures starting
For me it basically knocks me out and the hope is that it stops the aura from progressing into a full grand mal seizure
That's something my doctors prescribed specifically for me so I'm not suggesting anyone else should do the same
It's just another part of the plan I've built around my condition
The funny thing is that through all of this there was one thing I never really lost
Computers
Being stuck at home meant my PC became my way of exploring the world when I couldn't really go out and do much else
Eventually I studied computer engineering and somehow managed to graduate with distinction and started worki g from home
The seizures haven't magically disappeared and my life isn't some inspirational movie where everything suddenly gets fixed
But something strange started happening about five months ago
I started having extremely vivid dreams
And I mean really vivid
Every two or three days I dream about things that are completely impossible
Entire situations and worlds that obviously couldn't exist but somehow felt incredibly real while I was in them
And unlike my normal dreams I started remembering almost all of them when I woke up. Today i was standing in middle of a collapsing building the earth shaking beneath me and i still made it out alive by running jumping dodging and parkour funny thing is i am not at all athletic.
At first I just thought it was weird then I started writing them down and eventually I thought why am I just letting these things disappear
So I started learning creative writing I'm still learning and I wouldn't call myself a writer yet but I'm trying I've started taking some of these dreams and turning them into actual stories
Then I discovered I could use the computer I've had for years to actually bring some of those ideas to life
I'm making images, experimenting with animation, editing everything myself and slowly turning some of these strange dreams into videos
I even started a YouTube channel for it for me it's just something I wanted to try I've spent a huge part of my life feeling like there were things I couldn't do
So now I'm trying to find things I can do Maybe these stories will go somewhere Maybe they won't
But at least the strange things happening inside my head are finally becoming something I can create instead of something I just have to live with
I think that's probably the biggest thing epilepsy has taught me you don't always get your old life back
Sometimes you have to figure out how to build a new version of it