How North Palm Beach Benjamin School student is fighting rare disorder

Updated March 05, 2018
Conor Greene, 18, a student at The Benjamin School, inside his home Tuesday, February 20, 2018. Damon Higgins / The Palm Beach Post

Something was wrong with Conor Greene.

In a short time, this “talented kid, very athletic, very bright and good-looking,” had gone from getting As and Bs “without having to work that hard” to flailing in his classes at The Benjamin School, says his father, Al Greene. He’d curiously seemed to have stopped growing, had short-term memory problems and was having increasing trouble staying awake, with bouts of overwhelming sleepiness.

The North Palm Beach family was perplexed: Was Conor “being lazy and not working hard enough,” as his mother Gabrielle assumed? Or was the opposite true, that their son was working so hard at school and sports that he was just exhausted?

Even though he’d been a good student, it had gotten to the point, Al Greene says, “that people thought he was a big dumb jock.” Even Conor was beginning to doubt himself.

“He said ‘I was smart once, right?’” mother Gabrielle says. “It broke my heart. I knew he was a smart kid. But I didn’t know what was happening to him.”

After months of testing and a frustrating impasse between parents and child, the Greenes found that the cause of Conor’s troubles wasn’t that he was working too hard or not enough, but that his body was working against him.

The now 18-year-old is one of 200,000 Americans diagnosed with narcolepsy, a rare disorder that causes disruptions in a normal sleep/wake cycle, resulting in an uncontrollable daytime fatigue and urge to sleep, and often a sudden and frightening loss of muscle control.

Two years after his diagnosis, Conor is now managing his narcolepsy to the point that he’s on the honor roll at Benjamin, from which he will graduate this spring and then head to Ohio’s College of Wooster to play football. But managing his condition hasn’t come without sacrifices - his plans of military service or Division I athletics had to be altered, and currently there is no cure.

With the commemoration of March 10’s Narcolepsy Awareness Day, also known as “Suddenly Sleepy Saturday,” he and his family are sharing their life-changing experience with this often undiagnosed condition, so that maybe someone reading their story might recognize it in their own life. “They might be frustrated now, and just can’t understand what’s happening,” Gabrielle says.

“I was relieved,” says Conor, who shares his diagnosis with late British Prime Minister Winston Churchill, pioneering comedian Lenny Bruce, freedom fighter and abolitionist Harriet Tubman and actress Nastassja Kinski. Late Nirvana frontman Kurt Cobain, who was diagnosed, apparently also believed himself to be narcoleptic.

According to the organization The Narcolepsy Network, the cause of the disorder is not yet known, but there is evidence of genetic and environmental factors that affect the immune system. Narcolepsy affects the Rapid Eye Movement (REM) stage of sleep, during with vivid dreams occur. To the Greene’s knowledge, Conor is the only family member to have been been diagnosed with the disorder, but narcolepsy is thought to be frequently misdiagnosed as some of its symptoms are found with other more common conditions.

“There’s no real telling when I got it, but for some unseen reason, I have it,” Conor says, although the disorder does appear to possibly have triggers.

Tubman’s, for instance, may have come from a head injury, and Gabrielle Greene believes her son’s narcolepsy may have been triggered by a serious virus he had in the third grade. At the time, his height seemed stunted and he began to have nightmares. By the time he started playing lacrosse, “I would be sitting there, leaning on the lacrosse stick and fall asleep,” he says. “I figured I was just tired.”

Conor’s grades began to suffer, as well as his self-confidence and his inability to convince his parents that there was something happening he couldn’t control. Narcolepsy is found through a sleep study, one of which Conor underwent two years ago. At the time, the family’s pediatrician, flummoxed, suspected he might have mononucleosis. The sleep study, which included a timed test during which Conor fell asleep, revealed his true condition, a disorder the family had never heard of.

Conor’s diagnosis also includes cataplexy, a sudden loss of muscle control that can be triggered by sudden emotion or laughter. Narcolepsy with catoplexy signals a lack of hypocretins, which are brain chemicals that maintain and control alertness and REM sleep.

Excited to finally have a reason for what was happening with their son, the Greenes began looking for a solution, which was not easy, they say. For a while, Conor was on a gluten-free diet which he has discontinued, but still “needs to take drugs to wake up in the morning…and then take drugs to go to sleep at night, to just be a normal guy,” Al Greene says.

There also had to be adjustments and accommodations made at The Benjamin School, where daughter Peyton, 16, is also a student. The school has been “phenomenal,” mother Gabrielle says, with teachers leaving Conor alone and not waking him when he suddenly falls asleep, and adjusting his curriculum.

With the management of Conor’s diagnosis came the sudden and harsh realization that some of his plans were going to change. Where he once intended to attend the U.S. Naval Academy in Annapolis, Conor found he’d be unable to serve in the military with his narcolepsy diagnosis. And though, his father also “dreamed of (him) running down the tunnel at Ohio State University” as a football player, Conor opted instead to go to the College of Wooster, a smaller liberal arts college where “I can have a relationship with my professors and can explain why I fall asleep, without the rigors of a Division I school.”

“He’s a D-I player in a D-3 body,” Al Greene says. “He had to make life-altering decisions at 16 years old.”

Although there was no way of knowing what was happening to Conor before his diagnosis, his parents still have some guilt about considering that he just wasn’t working hard enough, Gabrielle Greene says. “It would have been different if we had known. And he wouldn’t have suffered so much.”

Conor, who has become a talented ceramics artist, which he picked up “because they didn’t have woodshop or blacksmith classes at Benjamin,” has also been encouraged by meeting and talking to other narcoleptics, including former NFL player Sergio Kindle, who “gave me some advice about how to deal with it.”

He’s comforted to finally know not only what is happening to him, but to know “that other people have this (which has been) really helpful,” he says. “I know I’m not the only one.”