Why I'm Sharing My Journey With Narcolepsy After Years of Struggling

Growing up in a small farm town in Illinois, I always wanted to stand out and be known for something, but I was incredibly shy and self-conscious about everything. I considered myself to be a good kid and student, mostly because I kept to myself and wouldn’t make waves. When I was in high school, I started experiencing bouts of exhaustion and having difficulties waking up. It was easy to make excuses for why this was happening, so I did what most kids do and ignored what was happening. The exhaustion intensified with each passing year and for a kid who didn’t like to break the rules, I started falling asleep in class.

 

The first time I fell asleep at school was at the age of 15. My teacher played a VHS copy of “Gandhi” and after a few minutes my eyes started to get heavy. I love movies and I would never fall asleep in class, but you can’t control everything and I wasn’t able to control myself that day. The next thing I remember were the lights turning on and class being over. I couldn’t believe I fell asleep in class. To this day, I still haven’t watched “Gandhi.” That movie will always be tied to this moment in my history and the start of several more issues with sleeping in class.

While I was in college, things started getting worse, but the excuses kept coming. I would have trouble getting to class, and I would fall asleep in almost every lecture, but it was only because I was staying up late or working too hard at my job, right? It got to the point where I dropped out of college and went to a vocational school instead. I knew this wasn’t the best move for me, but it was exciting and new, so things would be different – or so I thought. I still had trouble making it to class every day, but I didn’t fall asleep in class. Instead, a new wrinkle came into my life: nightmares.

Here I am, a 22-year-old man, and I was having nightmares. I was too embarrassed to talk to anyone about them for fear of being made fun of, or not taken seriously. A few times a week, I would jolt up out of bed in a panic. I was positive something was in my room, because I could see it while I was lying down. I would stare into the darkness for what seemed like forever. I was expecting to see my tormentor, but nothing was there. It was frightening for those heart-pounding moments, but then I would lie back down and fall asleep like nothing had ever happened. Those nights were a mix of terror and confusion. I don’t have many nights like that anymore, but when I do, I’m more aware of how to deal with my emotions and not let them get the best of me.

Despite all this, I was blessed to have met the love of my life, gotten married, had four children and I am working full-time. It wasn’t until our oldest son was in kindergarten that I decided all of this was enough. I was having trouble waking up to get my son ready for school and on the bus, which led to him being late to school for more days than I’d like to admit. I had troubles pushing through these issues for my entire life, but I never thought it would affect my family.

After discussing everything with my wife, I finally visited a sleep doctor to talk about my situation. After some questioning and a sleep study, I was diagnosed with narcolepsy, a chronic neurological disorder that impairs the brain’s ability to regulate the sleep-wake cycle, at the age of 33.

I was surprised to find out that narcolepsy was much more than I thought. In addition to excessive daytime sleepiness, I learned my nightmares were hypnagogic hallucinations, another major symptom of narcolepsy. Learning all of this, I couldn’t wait to tell the people closest to me and let them know there is a real reason why I act the way I do.

Managing symptoms of narcolepsy varies widely by person and it often takes a long time to find the right combination. Two years into my diagnosis, I am on my fifth medication and I have taken up meditation to deal with my symptoms and stresses. By partnering with my sleep doctor and doing my own research, I’m still finding new ways to have a fulfilling life.

Growing up in that small farm town in Illinois, I always wanted to stand out and be known for something. After 30 years, I finally found that calling. I’m here to help others by sharing my story to raise narcolepsy awareness. I want men and women everywhere to know that facing a chronic disorder, like narcolepsy, is not a sign of weakness and you are not alone. My journey is far from over; in fact, it’s only the beginning.

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Thinkstock photo via KatarzynaBialasiewicz.