Living With Narcolepsy

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As a teenager, you’re hit by waves of stress and pressure until it no longer becomes a wave but an atmosphere that constantly surrounds you. You’ve got that Honors Bio test due on Friday, and your AP Language revision—oh, and a soccer game the night before. Add on the long commute home and figuring out your outfit for the next day.

Currently, I am a junior in high school. Just like many teenagers across the globe, I’m also swept into “an abyss.” But there’s one difference between me and other high school juniors: I have narcolepsy. Narcolepsy is a neurological sleep disorder that affects 1 in every 2,000 people, and for some reason I was chosen as one of them.

Sometimes I imagine a fortune wheel, where the person pulls down and hopes it lands on the big money. I think of someone pulling the wheel with 2,000 different people, and the slim chance it would’ve landed on me. But it did, and since then my life has changed.

When I think of my life and what I’ve gone through, I try to remember that everyone has to deal with something. This motto has been in my mind ever since I was little. Whenever I went in for my third blood test, or stood for an hour as I was hooked up to 100 wires for another sleep study, I thought, “Someone has it worse.” This is true. But to say that I don’t have a disability is an understatement.

Once I was diagnosed with narcolepsy, the relief and joy that I felt was indescribable. I was instantly set up with some of the best pediatric sleep doctors in my area, who started me on many strong medications such as Ritalin, Effexor, Imipramine, Xyrem, Concerta, Nuvigil, and Provigil. My 10-year-old self thought, “Okay, I’m diagnosed, they know what’s wrong with me. Now I’ll be fine.” The thing was, I had no idea how hard it would be to juggle my medicine’s side effects, social life, academics and more.

It was only the start to a lifelong journey that I am still embarking upon.

If you look at me now, six years later, you would never even suspect these things about me. I look and act normal to someone who doesn’t know about my struggle with narcolepsy. But that’s the thing with narcolepsy: it’s not a cast on your arm but an invisible condition. Most of my symptoms show at home or with my friends. It’s a blessing and a curse, because I can go to school and not be treated differently or pitied. But if I were to say “I’m tired,” how many of you would know the degree of my fatigue? Perhaps you would think I was was partying the night before or just stayed up too late. Yet this is not true. I don’t party or stay up late. Each day I prioritize every activity in my life, because I only have so much energy. I’ve never been able to stay up past 10 p.m. studying for a test or hanging out with friends. Whenever I get an A in school, in my mind it’s an A+++ because I have to work five times as hard and give up an unbelievable amount of things to make room for studying. This is hard as a student, because I need to complete the same amount of work with half the amount of time and energy than everyone else.

Although living with narcolepsy hasn’t been easy, I’ve learned to push through. Certain days are better than others, but the feeling of excessive fatigue is so common, it’s like a friend right by my side. At first it was hard going about my day so tired and foggy-headed that I’d even go to the bathroom and cry. But gradually, I became accustomed to the presence of my excessive fatigue. Now, it’s just a slight tug in my heart that’s clouded over by my stubbornness and strength. When I was young, I developed a technique for expressing my sleepiness and feelings inside. After reading Laura Ingall Wilder, I was impressed when on the back of her wagon, she screamed and complained quietly in her head about the hard journey west. I’ve been doing this ever since.

A common symptom of narcolepsy is cataplexy ― the temporary loss of muscle control from strong emotions. Although I’m not as affected by it during the day as my excessive daytime sleepiness, it’s a small yet powerful thief that has robbed me of an emotion I hold very dear: laughter. I’m trying to remember when I used to laugh normally, without my muscles collapsing and my body falling, where I could keep my head up and not have to worry about getting to a chair or injuring myself from a fall. Yet this normal, giddy, everyday action is so faint to me that I can only remember when it started—with the slight shake in my hands in fourth grade, which at the time seemed odd and foreign. If only I had known and taken advantage of every single laugh before it grew worse. For those of you who are reading this, I ask you to do one thing. The next time you laugh, take in the emotion. Realize that you are standing, safe, and comfortable. I can’t tell you how bad I want to feel that again. I worry that one day I’ll laugh in a pool and drown, drop someone, or fall and get hurt.

By now I’ve learned that I was given this disability, and it’s my job to adapt to it and push through with strength, dignity and awareness. I won’t let it stop me from laughing, getting good grades, doing well in school, maintaining relationships and more. My life is modified, pulled back from everything I want to achieve, but it doesn’t mean I can’t be just as successful. This has caused me to do everything with overwhelming purpose and caution.

Narcolepsy is a disability, but it’s one that gives me opportunities to be involved and successful. At first I had trouble saying, “I have a disability,” because I associated the word disability with someone hospitalized and unable to function. I was wrong! I realized that anyone can have a disability, and you might not even know it. Now I can say I have a disability with pride, because it’s something I’ve defeated to a minimal presence. Nevertheless, it’s hard when I’m in the disability pre-board line for my flight and people give me the “what is she doing there” type of stare. A lady even came up to me and asked if I was really disabled. Sleepiness and sleep deprivation is so common, making it difficult for people to understand the severity of my fatigue, especially when I look normal.

Truthfully, I don’t know who I would be without narcolepsy. It has given me an immense amount of strength, appreciation, hope, and responsibility that has made me more mature and aware. It has shaped the person I am today and will become in the future. I am thankful to the Narcolepsy Network organization for training me to became a youth ambassador. This experience has opened gates to many opportunities and most importantly introduced me to a teenage support group. I have friends all over the world with narcolepsy who understand me. No matter how hard you try to explain, it’s difficult for someone to understand what it’s like to live with a disability every day, taunting and teasing you on what you’re missing. And the worst is there’s no cure. But my community has created new friendships with people I never would’ve met, and this one similarity between us was all we needed to instantly feel comfortable around each other.

Sometimes I want to look at narcolepsy in the eye and say, “You thought that you could run my life, but look at me! The Narcolepsy Network is providing education and awareness. Look at the many medications people are taking to help them. Look at all of the things I’m doing, and the incredible people who have helped me. You will never outrun me in the race. I will prevail.”

My journey has been hard, I admit. As a third and fourth grader I was faced with hardships that most have never been exposed to. I was sad, tired, overweight and annoyed from the constant doctors prodding and diagnosing me with different things. Having two surgeries and finding out they were not helpful; sleeping with wires all over my body; medications with side effects that almost sent me to the hospital... I know that as I move on to college I will face new challenges and obstacles, but I have confidence I will overcome them. I don’t know why God gave this to me, but I do know that I will continue to advocate for myself and the narcolepsy community.