Epilepsy Association of Utah

Seize: The Story

The Epilepsy Association of Utah has launched a profoundly personal campaign to help remove the stigma that people with epilepsy face in their daily lives. Each person’s story with epilepsy is a unique story of discovery, acceptance, tolerance and conquering the fear that their condition brings. Seize: The Story is telling the story that each of us knows, of showing the world that epilepsy has not stopped us from living.

Each Month, the EAU spotlights an individual on our website, blog and other social media outlets. We invite you to share your story (Submit here) of living with epilepsy and what you have done to overcome adversity.

This month we spotlight:

Taylor Ferguson

FergusonNobody knew I was having seizures, not even my parents. I just thought I was having blackouts as I would call them, until I went to my guitar lesson and had one of my “blackouts”.  My guitar teacher worked with epileptics so she knew I had just had a seizure.  I remember peeking around the corner and wondering why my guitar teacher was at my house, what they were talking about and why my mom was crying?  We then took a visit to a doctor’s office…it was true, I had epilepsy, but at the age of nine I had never heard of epilepsy before, so I just thought it was like the flu and would go away.  The day I realized it wouldn’t go away I cried myself to sleep.

School was hard!  I lost almost all of my friends because they thought I was “contagious” and when I explained to (my at the time best friend) that I wasn’t she just said “okay” and walked away.  See if you were friends with me you couldn’t be popular.  It took me awhile to really realize what happened with my best friend; at the time everything was crashing in on me.  I got made fun of all the time; it was so bad my mom put me in home hospital.  When I was having a lot of seizures I would be home with a tutor but when they would get under control I would go back to normal school.  I then went to a charter school in eighth grade just so I could get away from all the kids that knew about my epilepsy and would make fun of me.  When I was sixteen I had brain surgery and had a piece of the brain removed to try and stop my seizures, so I was out of school my sophomore year. I then went back to school my junior year of high school.  But with only the people from my elementary knowing me, well you would think high school kids would be more mature, no some of them still made their stabs at me I was just not as affected by it and knew how to stand up for myself.

About two years after my brain surgery I was going to get my driver’s license, the day before I was going to take the driver’s test I had another seizure.    My parent’s and I started looking into other options. We then decided to have a VNS (Vagus Nerve Stimulator) implanted.  We decided to have the VNS surgery (which is a device like a pace maker that is hooked to the vagus nerve and sends shock waves through my brain every 3 minutes for 30 seconds to try to stop or lessen the severity of my seizures or after affects), about six months to a year later the VNS stopped working and I gave up all hope.  Nothing had worked and there was nothing left to do; pills didn’t work and there was no surgery left.

I never thought that I would get married because of my epilepsy but when I was twenty one I found the greatest guy in the world, who loved me for me and didn’t care that I had epilepsy like a lot of the other guys out there.  So he proposed and I said “yes” and we were married about six months later. A little while later I got pregnant and I had an ectopic pregnancy (where the baby is growing in the Fallopian tube), but two years later I got pregnant again and had a daughter in May 2014.

Granted I have been talking about my epilepsy, so it hasn’t been the best of memories. My life hasn’t been all bad.  I have an amazing family, daughter, husband, and friends, have had awesome vacations to Bear Lake, Pinedale, Disney World/Florida, Disney Land, Island Park and many more.  I have had a great life with many bad experiences but I wouldn’t take them back for anything because they have made me who I am today.

I hope this helps someone out there in some way!

Taylor A. Zobell Ferguson