Hey my loves,
November is National Epilepsy Awareness Month! Epilepsy affects approximate 2 million people in the U.S. It is vital to promote diagnosis of this condition in order to alleviate seizures and their impact, improve quality of life, and even prevent death.
In support of everyone who lives and loves a person with epilepsy, I wanted to share my journey about living with a seizure disorder, a journey that started about 13 years ago.
It was a sunny day at school. Another day of junior high enjoying the simple life of officially becoming a teenager. One of my favorite past times in school was running track. I loved running, and I was fast as lightning beating half of my classmates in races that happened during recess. One particular day changed my life drastically. During a race, a weird feeling came over me and I instantly collapsed during the middle of a race. As my body hit the ground, I can hear some of my peers laughing. All I remember was the laughs fading away in my brain as they realized this wasn’t a joke and I wasn’t getting up. My mind was telling me to get up, but my body couldn’t register to what I was thinking. I laid on the ground shaking and feeling hopeless because I didn’t know what was going on with me and I had no control over it.
My first seizure happened at school when I was 13 years old. Not exactly the kind of thing a teenager looks forward to.
My mom didn’t take the issue lightly. She took me to multiple doctors as they stuck needles in me, gave me MRI’s, and did every evaluation on me to the point where I thought this was my new normal, which was a scary feeling for me. After all the tests, every doctor had the same response saying, “The results came back normal. Oprah appears healthy and normal.”
We definitely know I wasn’t “normal” when I had a second episode at school passing out in the girls bathroom and a fellow classmate found me unconscious on the floor. That’s when my mom took me to a neurologist specialist in New Orleans where I was diagnosed with a seizure disorder due to hereditary traits and stress. The type of seizures I have are tonic-clonic seizures: electric discharges instantaneously involving the entire brain losing consciousness right from the beginning of the seizure causing convulsions, jerking, and head banging. Before an episode, I get two warnings I’m about to have a seizure. One is experiencing sudden chest pains and the other is getting a weird taste in my mouth. I also experience sudden nausea during some. After I come out of an episode, I wake up disoriented, tired, and drained not having energy to do anything. The worst part of the aftermath are the headaches and soreness of my body, cramping during and after, and the temporary memory loss. It also affects me mentally. Having a seizure disorder affected my self-confidence, having me think less of myself and fearful of the outcome of my future. What if I have a concussion and wont wake up? What if this disorder affects me from having children? If I have children, will they suffer with the same disorder as me? These type of thoughts go through my mind daily and it hits a tough spot inside of me every time I have an episode. Living with this has also made it mandatory to be transparent about my disorder to the people in my life including my romantic relationship. I have to let people know the whys and what to do’s if I ever have an episode around them. Its not something I can hide because its a part of my life I have no choice but to deal with.
I wrote this blog not for sympathy, but to encourage everyone suffering with a disease or a disorder that the road may not be easy, but don’t give up on yourself. I have bad days where my disorder have me bed bound not being able to work. I have days where I wake up confused on the floor surrounded by concerned faces which lets me know “it must have happened again.” Even though medication does help my overall situation limiting my seizures, and my future seems bright, I made a promise to myself that I will not let my disorder define me and stop me from becoming the person I want to me. I might have to take the slower approach and make a few detours because of my health, but I’m forever thankful my good days always outweigh the bad.
Until next time,