Living with narcolepsy

Senior Tarleshia Jean-Pierre going through what is known as a sleep attack.

A.J. Hairston

Senior Tarleshia Jean-Pierre going through what is known as a sleep attack.

A.J. Hairston, Photographer

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Whenever I tell people I have narcolepsy, it usually results in a puzzled look on their faces. Before, I went out of my way to explain the definition of narcolepsy, but now I just say that I am burdened by a sleeping disorder which prevents me from staying awake.

The explanation usually triggers the response: “I wish I had that” or the question “Are you allowed to drive?” Few people understand narcolepsy, but many are diagnosed with it each year.

Feeling alone with narcolepsy is common with people who suffer from this sleep disorder.

Tarleshia Jean-Pierre
Feeling alone with narcolepsy is common with people who suffer from this sleep disorder.

Narcolepsy is a chronic sleep disorder that affects 1 in approximately 2,000 people in the United States. It deals with the brain’s inability to regulate sleep/wake patterns that can cause sudden sleep attacks. When sleeping, brain waves slow down. This state is known as non-rapid eye movement or NREM sleep.

After an hour or so of sleep, the average human body goes into rapid eye movement or REM sleep, the state in which people have dreams. People with narcolepsy enter REM sleep without first going through NREM sleep, which can be rephrased as a sleep attack. Sleep attacks for narcoleptics can last anywhere from seconds to minutes. Its symptoms can range from slight to extreme.

In 2008, I was diagnosed with narcolepsy without cataplexy, which means I have sleep-attacks, excessive daytime sleepiness or EDS, and dream-like hallucinations. An extreme case is narcolepsy with cataplexy which causes loss of voluntary muscle control. Slurred speech and total body collapse accompany this, depending on the muscles involved. These symptoms are normally triggered by intense emotions such as anger, surprise, or even laughter.

Some people fail to grasp that narcoleptics are physically and mentally unable to stay awake. The name for a sleep attack originates from the fact that it comes out of nowhere at full throttle. At one second you will feel perfectly fine, alert and awake. The next second, however, you’ll feel as if you are ready to take the nap of your life. While people might call this laziness, narcoleptics want to stay awake and finish their responsibilities, but sometimes, this task proves impossible.

As bad as the critics state, narcoleptics manage just like ordinary people. I was diagnosed as a kid, so I was able to adjust many different methods to go through daily life. Sleeping at decent times prove to be common advice from doctors. For some people, this may seem like a simple task, but I was rebellious when it came to bedtime. Even now at the age of 17, my bed time does not even come close to what the doctor recommends.

The place narcolepsy affected me the most was school. For almost every teacher I have had since fifth grade, I was their first student to have narcolepsy.

My first teacher to notice was my fifth grade teacher, Mr.Cook. When I explained to him the reason why I constantly slept in his class was because of my narcolepsy, he said, “Well, I guess we’ll have to come up with some ways to keep you awake then.”

WordItOut-word-cloud-841227A.J. Hairston

While this may seem reasonable, his true intentions were to persistently squirt me with a spray bottle, attack me with noisemakers, and throw his rubber balls at me. Over the years, most of my teachers acted like Mr.Cook and were more than willing to help me with my narcolepsy. Mr.Cook was the only one who ever used those methods, but even after that, he was by far one of my favorite teachers.

Although the disorder has plagued me for six years, I still tend to ignore it. I am able to overcompensate my control of the disorder. Some days, if I wake up and feel fine, I neglect to take my medicine. However, when I do this, I miss most of school because I fall into a deep sleep during class. I hate taking medication, but because of narcolepsy, without it I will be dozing off constantly. If I fail to, I never know what will happen next.

When I was first diagnosed my doctor, Dr. Ghazala Quraishi, a certified neurologist at Fusion Sleep told me:

“Because narcolepsy isn’t known to many, there will be people who mistake your sleeping for other things, so don’t be ashamed to tell them about what you have.”

Out of all of the years of living with narcolepsy, I have only met one other narcoleptic. Eventually, I wanted to know how other people dealt with the disorder, so I joined an online support group for narcoleptics called “Living with Narcolepsy.” At first, I was reluctant to join because the last one I joined was unstimulating and offered little support.

The members of “Living with Narcolepsy” were actually helpful and talked about real problems that accompany the disorder. The topics ranged from reactions to different medicine, all the way to tips and tricks that people used to stay awake at school, work, and even at home. Because a majority of the members were adults, their problems were of more importance than those of a teenager.

Living with narcolepsy is a constant struggle, but one that can be easier if people around narcoleptics understood more about the disorder. Check out a helpful infographic that can explain what narcolepsy is and is not below.

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