Living With Epilepsy by Jenny LaBaw - Real Talk Real Women Book

Living With Epilepsy by Jenny LaBaw

Raised in a middle class household in a rural Colorado mountain town, with two loving parents and a big brother that I idolized – I had a pretty great childhood. I attended public school, had a great group of friends and influential teachers. Most early memories I have involved some type of outdoor activity. Until dark every night, my friends and I would build dirt hills, play football in the front yard and flip flop on our trampoline. As a family we spent our vacations in the mountains hiking, fishing and camping. I participated on every youth sports team possible. Life was healthy. Life was active. Life was good. Then, out of nowhere, at the age of eight, I had my first seizure.

Initially I didn’t know what it was. I was twirling around the bars on the playground at recess, like I did everyday, when all of a sudden I lost strength in my right arm and came to a crashing fall onto the gravel below. Embarrassed and a bit confused, I remember quickly jumping back on the bars like nothing had happened. I felt fine except a strange “tingling” sensation in my right arm. When that sensation didn’t subside and I had a few more similar episodes as the bar mishap, it was time to mention something to my parents. Obviously concerned, we made an appointment with a doctor who referred us to another, and then another and finally after several tests, it was determined that I had epilepsy.

For the next six years of my young life, I was poked with needles, submerged in scary MRI machines and constantly wondering when the next seizure would happen. The seizures themselves and crawling through the medical maze were confusing enough but the worst part of the whole deal was the medication side effects. Epilepsy is a neurological disorder without a cure. According to the World Health Organization, 50 million people worldwide have epilepsy. Medication is how most disorders are treated, but finding the correct medication and dosage can be a battle. In six years I was constantly tinkering with dosages and with which types/combinations of medication to try and stabilize my seizures. During this time the side effects were the worst part. One made me gain a substantial amount of weight, one made me experience retching attacks, one made me have double vision, I became severely toxic on one and none of them stopped the seizure activity.

Completely emotionally and physically drained with the entire process, it was time to take more drastic measures. At the age of fourteen, with the help of my family and my medical team, we decided it was time to take me totally off of medications and try to trigger a seizure in hopes of discovering what part of my brain the electrical impulses were coming from. This meant being hospitalized and under constant supervision until a seizure occurred and they were able to capture it. They tried everything to instigate an episode. They played music, they had me exercise, they deprived me of sleep, they flashed lights at my face, they tried to put me in stressful situations… all to try and prompt what I never wanted to happen again. But nothing happened. Thirteen days into this hospital stay, I was irritable, I was exhausted and I was just ready to go home. Then, what the doctors wanted to happen happened. I remember it like it was yesterday. I was sitting in the radiology department in a blue recliner with electrodes stuck all over my head, an IV in my arm and a monitor in front of me with flashing lights and weird designs continuously running across it. I was instructed to get up and press a small button attached to a tube that was attached to my IV when I felt a seizure coming on. This was going to shoot dye into my system that would somehow highlight the spot on my brain where abnormal activity was occurring and be relayed to another monitor the radiologists and doctors were observing. I remember sitting there for several hours with my grandmother, when she briefly left the room to go grab lunch at the cafeteria. This was the only time I was left unsupervised the entire time I’d been there. All of a sudden, it was happening. I remember feeling nervous, but excited. The sensation in my arm was intensifying so I did as I was instructed and stood up to go hit the button.

The next thing I remember, I woke up and could only see bright lights and people in blue scrubs with masks and gloves on. I was yelling my brother’s name. My face hurt really bad. I didn’t know where I was. I was scared. Then, my mom grabbed my hand. I was okay. From there, my family and my medical team explained to me that I had had a grand mal (or tonic-clonic) seizure – the type of seizure where an individual loses consciousness and falls to the ground shaking. They told me, I did great and I did what I was told to do. I pressed the button and they found the spot. They think my seizures come from a scar on my frontal lobe caused from having meningitis as a baby. So, mission accomplished, right? I did what I had set out to do. I had a seizure, the doctors captured it, and we had an answer. Now what?

Now, time to try a new medication. This time, they were putting me on one of the oldest meds in the book – Dilantin. Nervous as to what side effects I was going to experience this time, I reluctantly started another journey with yet another medication. Much to my surprise, I felt good and my seizures were under control. Things kept getting better the longer I was on Dilantin as far as number of episodes. It was evident that as long as I paid attention to what I knew could stimulate a seizure and avoided those situations, I was going to be seizure free.

Living With Epilepsy by Jenny LaBaw - Real Talk Real Women BookFor the last 16, almost 17 years, I have been strictly on Dilantin. I have been able to do what I want despite having epilepsy. I’ve gotten my drivers license at 16-years old, I was captain of my softball and soccer teams, I graduated high school with academic honors. After high school I attended college where I was captain of my soccer and track teams. I graduated with a Bachelor of Arts degree in Physical Education, receiving academic honors as well. Post college I was hired on as a personal trainer at a fitness club and for the last 10 years have continued down that path developing myself into a strength and conditioning coach. At the age of 28, I was introduced to this thing called CrossFit. It is a type of exercise program involving high intensity, constantly varied, functional workouts. There are competitions within the CrossFit community where athletes compete to test their fitness. In 2010, I did my first competition and, much to my surprise, won. After my success, I was encouraged by coworkers and friends to train for the highest level of competition within CrossFit, called The CrossFit Games. Basically, it’s the Olympics of exercise. So, for 6 months I trained the hardest I’ve ever trained for anything before, and earned myself a spot among “The Fittest on Earth” to contend for the title. In a 3-day span with 10 grueling workouts, I earned myself the title as the 6th Fittest Women on Earth.

Life is funny. Never, in a million years, if someone asked me where I thought I would be when I was 31-years old would I say a Professional Level Athlete. I thought I would have been married, with kids and living the “American Dream”. Instead, I am lucky to get to spend most of my days with the man I love and have two yellow Labrador retrievers that are my pride and joy. I am living my life everyday with passion for and the ability to help others be better than they were the day before. I have a platform in this ever-growing world called CrossFit where I am able to share what I have just shared with you all. I get to educate people on what epilepsy is. Inspire people that despite adversities we are all handed, there is always a light at the end of the tunnel and positive things to focus on. So I guess, no, I am not living the “American Dream” – I am living my dream.

Epilepsy is a part of my life; it is not my life. It doesn’t define me. It doesn’t restrict me. It has made parts of my life hard, but it has made and continues to make me a stronger person than I would be without it.

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Connect with Jenny LaBaw via Facebook, Instagram, Twitter, Youtube and her website.
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Written by Jenny LaBaw

I'm an elite CrossFit athlete, living with epilepsy.

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