Kendall’s Story
I had my first seizure when I was 1 year old. It was a febrile seizure, and when the ambulance arrived, the EMT told my parents that I would be fine, as this was common and it probably wouldn’t happen again. And from the ages of 2-10 I appeared a perfectly healthy kid, doing great at school and who loved phineas and ferb. Accept for one thing. I did this “weird” thing. My eyes would roll back and I would blink very rapidly.
I was having absence seizures.
Now, you may notice I wrote that things were normal from ages 2-11 and that’s a - what ? A nine year gap ?
Nine years. Nine grueling years from the age of 2-11 is how long it took for me to get diagnosed with epilepsy.
I am not one to resent or regret. That’s just not me.
But hearing 9 years sometimes makes me feel a range of emotions. And definitely not all of them good. from ages 2-11 my parents and I were constantly told by doctors that I was doing this for attention, this was something I would outgrow, it was a nervous habit- I could learn to kick it.
In 2012 at the ripe age of 10, I reached my worst. I would have clusters of seizures, in the classroom I would miss whole lessons - spending all my time seizing. hundreds of seizures a day. it is safe to say i probably spent half that year unconscious. I developed severe OCD, and trichotillomania - pulling out half my hair. however, that year a teacher of mine had noticed one of my episodes- and asked my parents to look into it possibly being epilepsy.
On august 26th, 2013 I was diagnosed with absence epilepsy. specifically, CAE (childhood absence epilepsy).
The first couple years of my diagnosis was hard. Lots of blood work, medical tests, doctors offices, medication and side effects. It was very difficult for my family and I, until we were fortunate to find a medication that worked for me.
Then I made possibly the best decision of my life. I went to a epilepsy summer camp. my parents decided it would be a good idea to send me and I had been begging to go since I stumbled across the camp online.
It was paradise and I never missed a year; until I couldn’t go anymore. I was empowered through comradery, I always had a blast and to say that camp kickstarted me being a disability advocate is understatement.
I became an ambassador for the charity that ran my camp, I posted education about epilepsy on social media, made a documentary about my story, and ran my campaign called #dancingforepilepsy.
I now am 18, going on 19, have a part time job, am a writer for cripple media; continuing my advocacy work, and I am now as of October, seizure free.
Now I know that we aren’t supposed to let epilepsy define our life, but epilepsy is a big part of my life - and I think my life is pretty cool.
So yeah, I’m proud. Epilepsy makes me different- but difference is good.
The courage of those living with epilepsy,
inspires us and fuels our journey.
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