Navigating Through Life
When I first reached out to Epilepsy Florida I was trying to navigate life after high school and around 2017 I started having episodes. I have had seizures since I was 18 but didn’t know that’s what they were at the time. No EEGs or doctors caught it at the time. It wasn’t until my family caught it and starting doing research that my grandmother found Epilepsy Florida and sought help.
The first time I had an “attack” my mom found me and called 911. My cat actually started alerting my mom about each episode (by meowing or banging her head on the wall). Then I was at my dad’s and they witnessed them and sent me to the hospital. With the uncertainty of everything and needing explanations and wanting answers I called Epilepsy Florida as soon as I got out of the hospital. My dad had them as a child so when they witnessed them they pushed for more answers.
I have participated in various virtual meetings, like the cappuccino Fridays and support group. I found EFL after the COVID shut down, so I have not been able to participate in any in-person activities yet. I have also utilized the medical services program for assistance to see a neurologist for the first time. The hospital noticed some abnormality in the back of my brain and said they believed it was a “seizure disorder” and recommended I see a neurologist.
While it has all been virtual right now, it has been really nice to be able to speak with and know other people who are also living with epilepsy. To know that I am not alone. To be able to speak with people who know how I feel, what I am going through, people who understand. I was being told all these things I couldn’t do anymore and I didn’t want to speak with my family about it. My dad’s seizures stopped so long ago and his experience was so much different than mine. I was in denial about it at first. I was concerned because I had a friend who had epilepsy when I was in school. I was concerned about being labeled as being disabled and people looking at me differently and thinking they could “catch it” from me. It has been great to have a group where I can be open and honest and be encouraged by others. Others who treat me like normal.
I also knew NOTHING about epilepsy and was scared to research it and not knowing what was true and what wasn’t. the groups made me able to get first hand stories and tips that people I know have done. To make the adjustments easier.
The challenges I see in the future are dealing with people who do not understand the condition. I worry about the medication not working or having a break through seizures and this effect my job.
While I am still at the beginning of my epilepsy journey I look forward to understanding more about it and getting the seizures regulated/managed to help me live a regular life; keep a good job, start driving, get married, and do something with music and teaching.