EPIlepsy: My Story

Epilepsy: My Story?

Epilepsy: My Story? As a child, I never understood why I ever deserved epilepsy. To me, it was scary and an embarrassment. I only had seizures during my sleep for most of my childhood. This was a good thing for me because in my young mind, having epilepsy and grand mal seizures was a complete embarrassment to me. I felt different than my friends and felt that I was not a normal kid.

As I got older, I had medicine to take every day, morning, and night. My problem as a kid was, I didn’t want to believe I wasn’t normal. Skipping days of medicine because I thought multiple times that if I go months without a seizure, I must be cured. It didn’t help that my parents who loved me, put extreme faith in the doctors’ words “Most children grow out of epilepsy before adulthood.”

          Because of my parent’s strong faith in seizures magically going away someday and me being an irresponsible preteen. I had a time when I went 6 months without taking my medicine. From that point in my childhood till my mature adulthood, it was an unforgivable personal mistake that I made.

 I ended up having a seizure in public in the middle of history class. After that, everyone knew about me having epilepsy. That was the beginning of middle school & high school nightmares of bullies.

The seizures gave me a learning disability in math and English. Now bullies love to find weaknesses in the individuals they want to bully. With my learning problems and what fellow students knew, how I felt was an embarrassment, the bullies used it against me. Making the last 6 years of school a regret and a disaster.

As a preteen I didn’t know how to respond to being bullied, making school years rough. After the years of school passed, I went through a sizable number of dark roads and a lot of dead ends in life. But I still fought. My seizures were not getting better, and the medicine didn’t work anymore.

           I got offered the chance to have brain surgery, but most of my family was afraid and worried about what would happen if it went bad. In my mind the only thought was “This could be fixed” and because of that, I was not backing down. The surgery was hard on me, they had to find out where the seizures were coming from, and to do that, I was required to stop taking my medicine while in the hospital as they did an intracranial depth electrode (also called Stereo-EEG or SEEG) test.

I had to have a seizure to make sure they knew exactly where the damage was done and where to work. After 3 days I had a seizure, and it was big enough that I was unconscious for almost a month. I recovered from the incident and finished the surgery 3 months later.

Not long after the surgery, I had a grand mal because of too much of the

 Mt Dew which doctors warned me about caffeine when I was younger. Now I don’t drink any caffeinated drinks. That was the last grand mal in my life so far.

After those grand mal seizures stopped happening. I started to have small simple little seizures. I called those seizure blackouts, where I would wake up somewhere else in my apartment or wherever I was staying instead of where I went to sleep.

Around 2009 I start to have what I call flash seizures. I reacted weirdly, my eyes went wide-open, and my mouth would drop open and then I would make a noise and it was done. It was only seconds long, but multiple ones in one day and it seemed impossible to stop.

Then I was offered a treatment called Vagus Nerve Stimulation (VNS). It sounded good and possible to work. Because of that chance of relief and less stress my seizures stop recurring. August of 2010, my seizures stopped happening day after day.         

 On September 1st, I celebrate the anniversary of not having seizures anymore. 2010 was the last year I had seizures. It has been over 13 years since my last seizure, I still take my medicine, but life is more peaceful today.

 I work as a peer recovery specialist and use my experience of the stress and depression caused by my epilepsy to let other people with epilepsy and mental problems know that it is possible to still live a good life. My recovery is from the use of therapy, treatments & medicine which help me cope with and stop my seizures.

I have learned 2 things myself that have helped me keep moving on in life:

  1. Doing the same thing repeatedly but expecting new results is the definition of insanity. Never be afraid of trying something new. You don’t know the result in till you do it.
  2. And that “There may be hard periods of life, but life never stays the same and is always full of new choices with new results.”

(This is an informational and personal experience article only and it is best to talk to your neurologist, nurse, or local doctor for more specific information on your diagnosis.)

John is a person who has been diagnosed with epilepsy since the age of 8. John has been a certified peer recovery specialist in the state of Iowa since 2019. John also has training in ASIST (Applied Suicide Intervention Skills Training). John is an advocate for epilepsy and mental health. John’s blog is to help fellow people like John diagnosed with epilepsy and mental on their road to recovery. John loves art, comics (Marvel especially), and the UI Hawkeyes. John lives in a small town with his 2 furry brothers Louie and Mario. (Dogs)


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  1. Pingback: Regenerative cells and Epilepsy - http://weirdmindwarrior.com

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