Jesse Williams can’t stay awake.

A Berry senior and a cornerback on the football team, Jesse is one of the 200,000 Americans diagnosed with narcolepsy, a sleep disorder that is almost the mirror image of insomnia. Rather than not being able to fall asleep, Jesse struggles to stay awake and, therefore, upright.

 “A lot of people in college can stay up until 2 a.m., but me, I just can’t do that,” said Williams, an exercise science major. “For me to be successful, I have to go home, eat and go straight to sleep. Then I have to get up really early, which makes my days even longer.”

The main symptom of narcolepsy is excessive daytime sleepiness, which is much more than simply falling asleep during classes. It’s nodding off doing small, everyday tasks.

For example, while out shopping with his mother and aunt on Black Friday this year, Williams said he felt his body slipping away. He awoke standing in front of a vending machine, money in hand, waiting to buy a water so he could take his 200 milligrams of Modafinil, a wakefulness-promoting medication.

Williams had just experienced what is called a microsleep, or a temporary period of sleep during which the brain is out but the body is still “awake.” This kind of sleep is known to non-narcoleptics as “dozing,” but for someone with the sleep disorder it is much more dangerous than simply dozing off for a few seconds.

The challenge of driving

Because microsleeps are common when doing rather mindless tasks, like driving the same route you’ve taken a thousand times, narcolepsy can make a simple commute a dangerous task. For Williams, who is from Summerville, the one-turn drive to Berry 20 miles away down a four-lane highway is sleep-inducing. 

“I have more trouble commuting to Berry than I would driving to somewhere like Macon,” Williams said. 

His commute concerns his football coaches, as well.

“We ask a lot of our guys in season: To balance academics and take care of all the [team responsibilities],” defensive coordinator Nate Masters said. “To add on a 30-minute drive home and back? That’s a lot,”.

Heading into this last season, the 5-foot-6, 165-pound Williams moved from running back to cornerback, so he had a lot to learn, Masters said.

“Normally guys don’t want to move from offense to defense,” he said. “They want to touch the ball. But [Jesse] wanted to find the best place so that he could contribute. It could’ve been a tough thing, but he spent a ton of time on it.”

Narcolepsy’s effects on the field

Williams’s work ethic is nothing new, said his long-time best friend, Nigel Matthews, who also is from Summerville. In fourth grade, when Matthews was the new kid in school, he naturally gravitated to football. That’s where he first heard of Jesse Williams.

“I just remember people in school talking about how good he was,” said Matthews, a senior at Boston College who played high school football at Darlington in Rome.

After the two met, football became the common bond. Matthews was one of the first people to learn of Williams’s diagnosis.

“It wasn’t like his narcolepsy was the type where you see people that just fall asleep while walking and can’t live their lives,” Matthews said. “We could still play all the sports that we’ve always played.”

But in recent years, Matthews said he has seen a change in his friend, which he attributes to his narcolepsy.

“He has bursts where he’s playing at a really high level, as high as anyone else on the field or higher,” said Matthews, who played a season at wide receiver for Boston College. “But then he also has lulls where it doesn’t seem like he’s really into it, and you can attribute that to the narcolepsy.” 

Williams, too, has noticed the difference, and it concerns him.

“I could go from a dead stop to full speed really fast,” he said. “After awhile, I realized it wasn’t there. My body felt like it was stuck. I felt really sloppy. Every now and then, I’ll have a day where it’s the real me, and then there’s some days where I have to pick myself up.”

After Williams’s move to defense, his friendships with some of his other teammates grew stronger, including that with Bernard Granville, Jr., a defensive lineman.

“There were times in practice when he looked better than the starters,” said Granville, a junior from Columbus, Ga. “But other times he was just too fatigued to make a play or keep up.”

Complications 

As with many conditions, narcolepsy’s treatments pose problems as well. Williams said he is constantly discovering new side effects from both his medication and from the disorder, in particular because he suffers from a more severe type of narcolepsy that is paired with cataplexy.

Cataplexy is triggered by sudden intense emotion. In Williams’s case, fortunately, this is most commonly joy or laughter, which robs his body of muscle control. Williams simply falls down. It might begin with a funny thought to himself, leading to numbness in his entire body. He has to clutch something nearby for support, because he knows he is about to collapse.

In the less than one-half-mile walk from a class in Cook Building to Krannert recently, Williams had to stop walking and sit down in order to prevent four separate cataplexy attacks.

“When it happens in public, the people that you’re with are embarrassed even though they won’t say anything,” he said. “They’ll just look at you crazy from a distance like you’re faking.”

During an episode, Jesse remains conscious but unable to communicate, leaving him to rely on whomever he is with at the moment to either understand or be patient enough to simply wait.

“Narcolepsy makes you dependent, and that’s the thing: I want to be very independent,” he said. 

The future

Williams takes the maximum dosage of Modafinil – 400 mg – and yet he continues to suffer. And the condition might be advancing. In recent weeks, during a microsleep, Williams might experience sleep paralysis, a more commonly known sleep disorder that includes vivid hallucinations. 

These discoveries, from the effects of sleep paralysis to mood swings caused by his medication, have Williams concerned. But after graduation, he said he hopes to live an active life as a football coach or physical trainer, occupations in which he has a better chance at staying awake. 

 

A magazine version of The Things They Carry is available below.