Teen essay: Living with narcolepsy and cataplexy

Since being diagnosed with narcolepsy and severe cataplexy in May 2011, my life has completely transformed. Relatively few people live with narcolepsy and most have never even heard of this strange condition. That is one of my toughest challenges - the lack of understanding.

Here’s the simple explanation for narcolepsy: certain cells in my brain, which inhibit my ability to regulate restorative sleep cycles, have killed themselves. This means I’m unable to enter any kind of deep sleep at night, making it impossible to stay asleep long enough to restore my body’s necessary energy. This in turn, leads to excessive daytime drowsiness, which sounds normal for any average teenager except this is times ten. Two thirds of people who have narcolepsy also suffer from a condition called cataplexy. Cataplexy is the complete and sudden loss of muscle tone and paralysis of all muscles, triggered by experiencing strong emotions such as excitement, surprise or laughter. If this happens when I’m standing up, my body almost immediately crumples to the floor, falling with complete dead weight.

You can imagine the negative impact on a person’s life. Despite the miracle of modern medicine, a good night’s sleep is scarce. Six hours is the maximum I get and even then it’s only three hours at a time, while the rest is tossing and turning. Persistent drowsiness occurs often, making daytime activities a struggle. Things like homework are difficult, not because of lack of interest, but the tiredness eats away my concentration.

Probably one of the worst parts is that I’m almost 18 and I don’t have my driver’s license, and I don’t know if I ever will. Just sitting in a moving vehicle is like an instant lullaby that rapidly puts me to sleep like nothing else. My doctors say that I can still get my license, but the fear of falling asleep at the wheel is just too great for me, so my parents are stuck chauffeuring me.

And that isn’t even the worst of it; because of cataplexy, I used to collapse on the ground multiple times daily around friends. I had no choice but to switch schools and cut all connections with my friends. It was the saddest decision I’ve ever made, but I couldn’t handle the daily fear and humiliation. Cutting all ties was the only way to keep my symptoms and stress under control.

Despite how hard I try to keep narcolepsy from defining who I am, my efforts feel in vain. It’s because of this condition that I live such a different life now and “normal” will never be the same again. Nevertheless, I’m thankful for the life God gave me, because I know things could be much worse.