Narcolepsy is my sleepy superpower

My talent is almost more like a superpower. I have the ability to fall asleep wherever and whenever. Now I know you’re probably thinking all teenagers have this power, but trust me, I’m a little different. At any time or place, I have the ability to take a nap.

Intrigued by my power, experts and doctors conducted multiple tests and studies on me. When the results came back, it was clear I wasn’t normal. One doctor even admitted, “These are numbers I’ve never seen before.”

Developing my superpower

I first began developing my sleepy superpower in the fall of my junior year after transferring to Middlesex School. That autumn, I was eager to get to know my new teachers and peers and have them get to know me — and my year started strong both academically and socially. However, in November, my excitement quickly vanished as I began to involuntarily fall asleep in multiple classes. Teachers and coaches became frustrated with me, and my mental well-being promptly deteriorated.

I tried everything and anything to stay awake; I would bring scalding cups of black coffee to class in hopes that the bitter taste, caffeine and second-degree burns on my tongue would help keep my eyes open. As the pressure to stay awake in classes grew, a great deal of both anger and confusion built up inside me and, eventually, transformed into a sense of hopelessness. By February, my sleeping problem had reached a climax. I was referred to Dr. Kiran Maski at Boston Children’s Hospital.

Narcolepsy: My superpower, diagnosed

I met with Dr. Maski to discuss my symptoms, but had to wait until spring break to conduct a sleep study to make a diagnosis. For 24 hours, doctors had me wired from head to toe collecting data on my sleeping habits. Once it was over, the results were undeniable — I had narcolepsy, a rare sleep disorder that causes sudden bouts of extreme sleepiness, and a condition that’s still widely misunderstood by most people.

Usually, diagnoses elicit despair and panic in a patient, but for me, the diagnosis gave me an incredible sense of relief and understanding. However, my diagnosis added to the faculty’s concerns regarding my ability to be a successful student at an academically rigorous boarding school.

But I refused to let my condition define me because I am so much more than a “narcoleptic student.” I am a curious student who enjoys learning, a determined athlete who loves to win and hates to lose, and, above all, a compassionate and lighthearted person who likes to think he’s somewhat funny.

As grueling and frustrating as my diagnosis is, I am grateful for the experience because I gained an enormous amount of knowledge about the world and myself. Dr. Maski’s guidance has been key to my understanding, management and acceptance of having narcolepsy. Because of her, I see my condition as something that can be sometimes annoying but is not a setback to success.

Finding strength and resilience

A Jagadguru recently told me, “Challenges are awesome as [they are] all great opportunities to know ourselves.”

Everyone has their own struggles, problems and other bits of adversity to overcome. Plenty of people with narcolepsy, such as Winston Churchill and Thomas Edison, have accomplished amazing feats despite their tendency to take an afternoon snooze.

Undoubtedly, my junior year was one of the more confusing, frustrating and challenging times of my life, and yet I have to be thankful for that because fighting through all of the confusion, frustration and challenge, I found within me unknown strength, resilience, and, most of all, pride for who I am.

Jake with mom, Anne, and dad, Mark

About the blogger: Jake Shusterman is a graduating senior at Middlesex School, where he played varsity hockey. He’s from Colorado and loves to ski and hike. Jake is a patient of Dr. Kiran Maski, sleep clinics director at Boston Children’s Hospital.

Learn more about the Boston Children’s Sleep Center.