My unfinished story
By Odalys Cardona
JoshProvides asked me to share my experiences on living with epilepsy. My struggle began at the age of 10 when my vision was blurred and I had a horrible fall landing me in the hospital. This occurred in 1972 and it was a harrowing experience for me. At this age, I was faced with growing up and learning about this mysterious disorder that had gotten ahold of me.
My journey started with petit-mal seizures which progressed to tonic clonic seizures. I was bullied and ostracized for being different, which unfortunately tends to happen to most people with epilepsy.
I continued to search for the next treatment that would help me and, at that time, it was brain surgery. In 2003, I took the leap to have the surgery with the hope it would lower the impact of my seizures.
I had a craniotomy which was unsuccessful, and I was comatose for three days. The deficits I was left with included short-term memory loss. This included most of the tools I needed to function in my job as a social worker.
This was my first battle, though more would come. Epilepsy can lead to depression and anxiety and both took hold of me. I dealt with all of this and eventually gained enough strength to move forward.
I was introduced to the idea of trying Vagus Nerve Stimulation (VNS) by my physician. I have had a VNS since 2001 and it has controlled my seizures by 30 percent. In 2019, I got a NeuroPace RNS System. This changed my life, and allowed me to have more control over my seizures. When I have a seizure, it captures it in real time and provides treatment. I compare it to having a sniper (RNS treatment) on the roof aiming and shooting at the target (the seizure).
This is where JoshProvides stepped into my life. I needed funds to help me with any costs I would incur towards the surgery. They provided me with a medical grant which provided me with the ability to concentrate on my convalescence.
Everyone at JoshProvides cares about those of us living with epilepsy and it shows. I am honored to be able to share this part of my story.
