Daily Fight to Live: Jillianne Swaby’s Story

My name is Jillianne, and I am 30 years old. I have been living with epilepsy since 2011. My life has been filled with challenges from the very beginning. I remember hearing stories as I grew up about how I was born with my umbilical cord wrapped around my neck. If my mother hadn’t made the difficult decision to stop pushing, I might not have made it into this world. Since then, I have always felt a sense of struggle and a desire to give up. It seems like no matter what I do, things never go right. My family has never believed in me, and my friendships have often been deceitful. When doctors couldn’t find answers, they would give up on me. At the age of 21, I was diagnosed with epilepsy and informed that I was experiencing grand-mal seizures. Despite trying various medications, none of them were successful in controlling my seizures.

My doctor appointments became excruciating, draining me mentally, physically, and emotionally. Eventually, the neurologist I was seeing suggested that I undergo a craniotomy, which meant undergoing brain surgery. I felt an overwhelming sense of fear and shame, as if my voice was no longer being heard. On July 13, 2015, I made the difficult decision to fly to Cleveland, Ohio, where the best surgeons would perform the surgery in hopes of giving me a “better life.” Unfortunately, although the surgery affected my short-term memory, my seizures remained the same or even worsened. Some doctors labeled my case as pseudo-epilepsy, while others believed it to be true epilepsy, and some even suggested it could be both. When I turned 26, I was no longer covered under my mother’s healthcare plan, which meant that continuing with doctor appointments and medications became a thing of the past.

I distinctly remember waiting for the bus one summer day in 2017 when I had a seizure as soon as the bus arrived. I don’t even remember if I managed to pay the fare. I was rushed to the nearest hospital, where I received treatment and was admitted for almost two weeks. The neurologist reviewing my case suggested that I register with Epilepsy Alliance Florida. Considering that I had been off my medications for nearly two years, he believed their program could help me get back on track and provide other services. At the time, I didn’t take the advice seriously and chose to ignore it. I attempted to work regular jobs to obtain health insurance through employers, but my seizures were so out of control that I could no longer hold down a job.

In October of 2018, I experienced a tonic-clonic seizure that was particularly severe as I stopped breathing. I was quickly admitted to the hospital and had to be intubated. A few days later, I underwent a tracheostomy, which led to a six-week coma. I went from intensive care to critical care, then respiratory care, before finally being discharged. Once I fully recovered and returned home, I made the decision to call and sign up with Epilepsy Alliance Florida. Initially, I had reservations, as many doctors and case managers had given up on me in the past. However, I discovered the incredible support groups where I could connect with others facing similar challenges. It was a relief to find people who could truly understand the effects of seizures and the stress that epilepsy puts on the body.

I used to contemplate suicide daily before I joined Epilepsy Alliance Florida. I even went as far as attempting suicide. Besides epilepsy, I have other concerning health issues that make it harder to deal with my seizures and the subsequent depression. One thing I appreciate about the organization is that they provide an on-site psychologist and support groups where I can vent. My life feels like a war zone, and I’m constantly fighting ongoing battles. I’ve been falling apart, but I’m learning how to be a soldier and take control of my life. It was the best decision I ever made to stay strong when everyone else gave up on me. Unfortunately, even now, some label me as a cry for help or see it as a cry for attention because they don’t understand this condition.

Every day, I fight to live and overcome the struggles I face, because, for a long time, I was merely existing. I am committed to continuing my work with Epilepsy Alliance Florida because it’s helping me discover things about myself that I never knew existed. I’m proud of the person I’m becoming, even though being epileptic is not easy, and it takes a toll on my love life. I deeply appreciate all the advantages and support provided by Epilepsy Alliance Florida. There are many people who stand by me when I can’t stand for myself, and for the first time in my life, I genuinely feel loved and blessed.