“Growing up, I’d experience these strange, disruptive happenings throughout the day. I’d just be sitting in class and out of nowhere, I’d lose complete focus and blank out for a few seconds. It made learning difficult and there were many times I’d catch myself in the middle of the day and feel completely embarrassed. I didn’t know what was happening, but I knew I couldn’t control it.
I remember sitting at my desk in school one time. A teacher called on me and said, ‘Dana, why don’t you try reading this passage.’ But as I began reading, I blacked out and woke up to find myself staring at the book. I heard my teacher say my name sternly. ‘Dana! Dana!’ She was upset and thought I was ignoring her or being disrespectful. It was a very confusing time for me and my family. I would later learn that these were called ‘absence seizures’.
At just 11 years old, I experienced a ‘tonic-clonic’. I lost complete consciousness and control over my body as my muscles violently contracted against my will. It was my first seizure. Soon after, I was formally diagnosed with epilepsy. My doctor placed me on medication and it truly worked well for a couple of years.
However, when I began experiencing irregularities with my menstruation, my doctor decided to take me off of my medicine to determine if it was having an effect on my period. I remember feeling so excited to be off medication, but yet so scared. On one hand, I was happy I was going to be living naturally for a little. On the other hand, natural had proved dangerous.
I didn’t want to go through life having this condition. I was already bullied enough through grade school. You know, the typical bullying every girl goes through. I knew my condition was only something that would add to it. And so it began. In ninth grade, my doctor began to slowly ween me off of my medicine.
Day 1: I felt okay. I thought that any odd feeling was just adjustments my body was going through.
Day 2: I remember thinking, ‘Okay, now I know I’m experiencing odd behaviors.’ But my stubborn self truly did not want to acknowledge it. It was dumb on my part, but I was young and simply yearned for a ‘normal’ life, whatever that may be.
Day 3: I went the entire day fighting what I knew were absence seizures. Instead of contacting my mom, I decided to wait it out. I remember I got home from school and began writing in my journal. By the time I neared finishing my entry, I blacked out.
The next thing I knew, I woke up in the back of an ambulance. Instantly, things became very clear to me. I thought to myself, ‘My life will consist of always taking precautions.’ This new realization was strong and loud in my mind. I remember feeling so much anger about it. All I could think was, ‘WHY? Why is this something I must endure?’ I cried the entire night, infuriated.
My parents raised me with a quote that always resonates with me: ‘You have 24 hours to cry about the situation. After that you have to decide how you want to handle it.’ Now, having said that, I have heard this plenty of times throughout my life. Sometimes I handle it well, while other times my decisions aren’t the healthiest ones. Throughout high school, I was on my medication and soared through my classes with ease. There was a period of three years where I didn’t have a single seizure. My guard was down, my worry at an all-time low. I often stayed up late and ate tons of junk food. My condition was out of sight and, therefore, out of mind. I felt great so why worry, right? I tried to maintain a happy life, which meant rarely bringing it up. Only my closest friends knew.
In college, something interesting occurred that always stuck with me. During my first year, I was in school studying to be a special education teacher. One of my classes was called ‘Responding to Emergencies’. There was a chapter dedicated to injuries, the Heimlich, and so forth. Then, I finally arrived at a page in our textbook. In the top right corner, in bold letters, read the word ‘EPILEPSY’.
Underneath was a summary of what it was, its origin, and what to do. The teacher went on to explain it, that you should just move any furniture out of the way from that person and let them have the seizure. Nothing about placing something under their head so the individual doesn’t continue to slam their head on the floor. Nothing about turning them on their side. ‘Many times, seizures can cause that person to be angry due to medical reasons,’ she stated. I sat in disbelief. The only thing that ran through my mind was, ‘How is it that Hippocrates could write an entire scroll on this condition (known as ‘On the Sacred Disease’) and yet this $300 textbook only provides me with a summary I could have googled for free?’ AND my professor was wrong in the epilepsy department.
I raised my hand, knowing full well that it probably wasn’t the best look for a freshman student to correct a professor. But something inside me felt like I would be doing everyone a favor. Who knows if they would be placed in that situation one day? When my professor called on me, I proceeded to tell her that she was incorrect in her knowledge of epilepsy. She asked, ‘Well, do you know someone who has it?’ I nodded. ‘Yes. I have epilepsy.’
For so long I kept it away, didn’t talk much about it. But there I was, expressing it to people that didn’t even know me. She was a little taken back at first, but then proceeded to ask questions. ‘Would you like to correct what I said?’ And so there I was, explaining to my class that you should hold the individuals head or put something underneath it. ‘Now, I’m not a doctor, so what I’m about to state may not be accurate either, but I only know what I know. When I wake up from a seizure, I am angry. Not because of some weird medical reason. I am FURIOUS that I just had ANOTHER seizure.’ That day, there was a weight lifted off my chest. For the first time in my life, I was finally comfortable talking about it.
A few years later, my original doctor quit to become a professor. I was referred over to someone else and not given the proper care. My medication caused awful side effects and nothing seemed to be working. I was continuously having seizures.
When my family and I went on a trip in 2015, I spent the entire time in bed. That was when I decided to leave that doctor and find a new one. She’s absolutely amazing! I am continuously having seizures to this day. Each time, I am always waking up wishing it never happened, but thanking God that I still woke up. Seizures can be deadly.
In April of 2018, I had to get staples placed in the back of my head. I was at the subway station and while waiting for the train, I remember nearing the platform to see if it was on its way. Then things went black. Suddenly, I awoke to find an EMT standing over me. I thought to myself, ‘How could you be so careless?’ It sounds silly to some people, but in retrospect I should have never been that close to the tracks (no one should be). After all, I have a condition that hasn’t been fully controlled yet. The train will get there when it gets there and it’s not worth my life.
One time, my boyfriend and I had just gotten back from dinner. I had a minor frontal lobe headache, but nothing that I haven’t had before. When we got back, I decided to get in the shower. After my shower, all I remember is stepping out, wrapping my hair in a towel to dry off and attempting to grab my toothbrush. After that, I don’t know what happened. I woke up to see my boyfriend’s legs and my cat staring at me. My neck muscles were exhausted I couldn’t even lift them to see his face. I was cough-gagging as if I had just puked. Actually, that’s what happened.
You see, when I fell into my tonic-clonic seizure, my boyfriend heard a loud crash from the office. He asked, ‘Dana are you alright?’ No response. With that he rushed in thinking that our shower curtain simply fell. It fell, but not simply. I fell back into the shower and because I hadn’t digested my food yet, I began to choke. Instantly, my boyfriend rolled me on my side and stuck his fingers in my mouth to get me to vomit (although this can be very dangerous). It took 3 showers to get the mac and cheese out of my hair, along with the smell. I thank God every day for him. I thank God for my family and friends who have always been so supportive, especially my mom and dad. They have been through it all with me and continue to love and support me.
The most rewarding thing to me is life itself. When you’ve cheated death on countless occasions, it’s great to be alive, regardless of your situation. Now more than ever I’ve wanted to bring awareness to this cause and help others understand it. People with epilepsy are like a fingerprint, all different. What works for one person, may not work for another. But I know the more that people share their stories and experiences, the closer we can get to a cure.”
This story was submitted to Love What Matters by Dana Pirolli of Philadelpia, Pennsylvania. You can follow her journey on Instagram here and here. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
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