Daily Fight to Live

April 14, 2021

Daily Fight to Live

by: Jillianne Swaby

My name is Jillianne I am 30 years old and I have been epileptic since 2011. From the time I was born I have been faced with challenges, I remember growing up hearing the story of how I was born with my umbilical cord wrapped around my neck and that if my mother would have continued to push me out I wouldn’t have made it into this world. I have been wanting to give up on everything in my life since the beginning, seems like no matter what I do things never go right. My family never believed in me I had friends, but they were only around just to deceive me. When doctors had no answers they just threw in the towel and gave up on me. I was diagnosed at the age of twenty-one with epilepsy and I was told that I was suffering with grand-mal seizures. Seems like every medication that I tried failed its purpose and my seizures were never able to get under control.

My doctor appointments were excruciating my mind, body, and soul were drained. The neurologist that I was seeing decided he wanted me to do a craniotomy, so basically, I had to undergo brain surgery. I will never forget how afraid and ashamed I felt, it was as if my words were no longer being heard. On July 13, 2015 I felt forced to fly to Cleveland, Ohio so that the best of the best surgeons can perform surgery to give me a so called “better life”. Not only was my short-term memory affected but my seizures remained the same, it feels as though my seizures became worse. There are some doctors that calls my case pseudo and there are others that say my case is epileptic, some even say both. By the time I turned twenty- six I was officially legally dropped off my mother’s healthcare plan, so continuing doctor appointments and medications became a thing of the past.

I remember waiting for the bus one day in summer of 2017, the moment the bus arrived I had a seizure, I do not even remember if I paid my fare. I was rushed to the nearest hospital where I received treatment and I was admitted for almost two weeks. The neurologist that was looking over my charts advised me to register with Epilepsy Alliance Florida due to the fact that I was off my medications for almost two years, he told me that the program can help me get back on track and also receive other services. At the time when the advice was given, I did not take it seriously and I ignored it. I tried to work regular jobs to get health insurance with employers, but working was something I was no longer able to do because my seizures were dramatically out of control.

In October of 2018 I endured a tonic clonic seizure. That episode was incredibly unique because I stopped breathing. When I arrived at the hospital I was quickly admitted, and I was intubated. Then a few days later I had a tracheostomy done that lead into a six-week coma. I went from intensive care to critical care then respiratory care before I was even discharged. When I finally got home and recovered fully, I decided to make a call and sign up with Epilepsy Alliance Florida. At first, I did not know what to expect from the organization because so many doctors and case managers gave up on me in the past. The support groups are amazing because I connect with others that are challenged just like me. Sadly, not many people know about the effects from seizures and the stress epilepsy give the body so I was never able to find people that can relate to my pain until now.

I used to contemplate suicide daily prior to joining Epilepsy Alliance Florida, I even went as far as attempting suicide. I have other health issues that are concerning beside epilepsy and it makes it harder dealing with my seizures and depression that follows. I love that the organization provides a on site psychologist so that way I can vent along with the support groups. My life feels like a war zone and I am fighting ongoing endless battles. I am learning how to be a soldier because I have been falling apart. The best decision I ever made was to take back control of my life and stay strong when everyone else gave up on me. To this day I am labeled a cry for help, or more like a cry for attention from those who do not understand this condition.

I fight daily to live and die because for so long I was dying to live. What many people do not know about my truth is that I was homeless around the time that I became epileptic. My very first seizure I had was in a shelter thankfully it was noticed and reported because I do not know how I would have survived. I am going to continue to work with Epilepsy Alliance Florida because I am learning things within myself that I never knew was there and I am proud of the person that I am becoming its not easy being epileptic and it puts a toll on my love life. For all the advantages that was given to me through Epilepsy Alliance Florida is greatly appreciated because there are many people that stands for me when I cant stand for my self and in the first time in my life I truly feel loved and blessed.

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