I received the results of my MRI scan when I was 19 years old. On the page, there was a very long string of words. But, most people call my brain defect, “Focal cortical dysplasia,” a genetic form of epilepsy. Basically, I was born with a mass in my brain the size of a pebble. Which admittedly is a big mass inside the most sensitive and important organ in your body.
Photo example (Not my actual MRI scan. It’s just from Google):
Mine is similar in size to the one in the photo. But, it sits on the top right, in the frontal lobe.
Before they even told me the details of how it affected my childhood, my doctors treated me as a miracle. My psychologist asked a lot of questions, one being, “What was your experience in school?” She had the most humiliatingly shocked expression when I told her I graduated from high school with a 6.3 GPA and already had my associate degree. She said, and I quote, “You should have been put in special education with your condition. You’re a miracle.” My psychiatrist didn’t even believe me when I told him the news at first. And my neurologist acted like I was a fascinating lesson in life.
The first month after my diagnosis was awful. I had to undergo a lot of testing. The worst of it all was the EEG, where I was hooked up to a machine that burned hot into my forehead for multiple days. I was even left with scarring for a while.
Photo example (Again, from Google):
I had to stay home and carry a bag connected to the “helmet” recording my brain waves. I also had to be on a live recording at all times (other than using the restroom) to the point that I had to sleep with this huge, bright light pointed in my direction. Although, there was one positive point. It was a little fun and flirty watching the graph spike as I texted this one person. They surely enjoyed pushing it to the limits.
Coincidentally, before the diagnosis, my psychiatrist had me on medication that helps with epilepsy. So, after the EEG, my neurologist was happy to tell me that no seizures were recorded, and I’ll still be able to drive legally. But, there is a catch, I still CAN get seizures and I need to make accommodations for myself. This sparked the realization that I have a disability.
I was incredibly conflicted. It was thrilling that I finally knew what was wrong with me and how to make my life actually liveable. But, I was also absolutely furious. What a sick joke. I was born with a brain defect that made my life unlivable, and I was forced to suffer completely unaware for 19 YEARS. TWO DECADES of being treated awfully because I just could not function as I was supposed to. My family, on the other hand, enjoyed making jokes about how I could make them skip the lines at Disney and park in handicapped spots.
Regardless of how I felt, I had to do my own research to figure out what my symptoms were and what I had to do to help myself. My doctors already told me:
- You can’t drink coffee.
- You can’t drink alcohol.
- You can’t be under high stress.
- You have to do 30 minutes of cardio a day.
- YOU ABSOLUTELY HAVE TO SLEEP FOR 8 HOURS A NIGHT ON A STRICT SCHEDULE.
I fucked up in all of these things multiple times when I definitely shouldn’t have. I actually drank coffee the other day at 5 pm and ruined my sleep. I deserved a treat though! I really did!
Because my defect is personal, unique, and very rare, I didn’t get much more information than that. But I already had a good clue on what things were caused by it.
My (known) symptoms are as follows:
Intense reactions to any form of adrenaline spike either sharply raised or lowered.
- Before treatment:
- Seizures caused by laughing, panic attacks, stress, or even boredom.
- After treatment:
- Tics caused by excitement, anxiety, or again, boredom.
- Seizures from highly stressful situations.
Incredibly disordered sleeping.
- Before treatment:
- HORRIBLE insomnia lasting days to weeks.
- Vivid, terrifying nightmares every night that I did sleep.
- After treatment:
- I sleep soundly.
Amnesia.
- Before treatment:
- When it comes to epilepsy, memories are not just forgotten. They are never given the chance to form. So, anything that happened before my diagnosis, that I did not develop a memory for, will never come back to me.
- I have a severe lack of most memories from before my diagnosis. Between the ages of 11 to 15 is the largest gap.
- After treatment:
- I can develop and recall memories fine. But, I still use the same tricks I had to rely on from back then.
Language disability.
- Same before and after:
- I have difficulty remembering words in general. I have a very long list in my notes app of words I forget the most often. Thankfully, I’ve known my best friend for so long that she almost always understands the exact word I’m looking for.
- I don’t remember how to spell things either. Any time I’ve ever written anything I have to have a Google tab open because I look words up so often. This was annoying in high school because my English teacher would pick on me for it. Worked for me though, the rest of the class liked me because I knew how to get on her nerves.
- I have to take a moment to put words together in my head before I can actually say them. Sometimes I might seem quiet because I just can’t figure out how to get the thoughts in my mind across.
Sensory sensitivity.
- Same before and after:
- My 5 senses are more reactive than they should be. I just have certain triggers to the details of my surroundings.
- Although I like to party, I can only go so long before I have to put on noise-canceling headphones and take a breather. Other people enjoy this because I am an excuse for them to leave a party if they have a reason to.
General.
-
- Difficulty understanding social interactions.
- Difficulty with concentration, planning, and impulsivity.
- I used to have hallucinatory seizures and that wasn’t cool.
I’m sure you can tell at this point how this pebble-sized abnormality has completely shifted the course of my life. I SEVERELY wish I could have gotten treatment when I was young. I should have. I don’t understand why I didn’t. However, I am fortunate with how my quality of life has skyrocketed since I got treatment and accommodations.
I’m normal, stable, and functional. I’ve been told maybe a thousand times how I act so much happier now. There’s still more I need to do. I’ll have to apply for a service dog to ensure complete independence when I live alone. But, I enjoy the state my life is in now.
I would like to thank the 7 doctors who took part in my life’s improvement. I would also like to thank my friends who stuck around when I was going through the worst of my seizures. Special shout out to my Bose QuietComfort headphones for being a major player in my sanity.
Life lesson? If you frequently collapse with muscle spasms, have gaps in your memory, and struggle to do things most people can do: go to a doctor.