Andy Nathan still remembers the conversation vividly, although it was as brief and casual as any between a father and his son. In this case, the difference came in the simplest of facts: It had been 12 days since his son last woke, much less spoke.
Tyler Nathan, who is now a senior at Scarsdale High School, opened his bedroom door that Saturday in late 2011 for the first time in 12 days. Soon enough, he stood in the doorway of the family’s study, his face flush with color, his eyes bright, and asked, “How long?”
When Andy Nathan told him, Tyler looked at his watch and confirmed that it was Saturday.
“I think there’s a practice now,” he said. “I’m going to go pick up a sandwich and go to practice.”
“And then he walked out the door,” Andy Nathan said.
For the younger Nathan, coping and thriving with a mystifying sleeping disorder is as intertwined in his life as jump shots and homework. He maintains both an A-minus average and his position as a starting guard on Scarsdale’s 12-6 basketball team despite being diagnosed with Kleine-Levin syndrome, a neurological disorder also known as “Sleeping Beauty” syndrome.
KLS mainly affects adolescent males (Nathan is 17). It causes them to sleep for 20 hours or more a day for days and weeks at a time.
Nathan’s longest episode occurred last fall — the day he was scheduled to take the SATs and two days after he suffered a severely sprained ankle playing basketball. It lasted 16 days. About a week later, he slept for 12 more days, missing the season-opening Maroon and White tournament at Scarsdale and two games a week later.
He has since worked his way into the starting lineup and averages 8.0 points and 5.0 assists per game. He ranks among the team’s top 3-point shooters and defenders.
“Our guys on our team are so supportive of him,” Scarsdale coach Jon Feld said. “One, he’s a great kid. They understand what he’s going through even though they don’t know what he’s going through. But he’s a starter on our team. And when he’s playing, he’s good.”
Although they didn’t know it at the time, Nathan’s health began to suffer late in his freshman year. The episodes eventually increased in frequency, including nine when he was a junior.
Because it is so rare, the family hadn’t officially diagnosed it until less than two years ago. They have gradually adapted, especially this year when Nathan has suffered only two episodes thanks to aggressively working to prevent sinus infections and minimize stress. Both seem to trigger every setback.
“It’s frustrating missing a lot of school, but I know when I get out of an episode that I can make up what I missed and in basketball I can get back into shape,” Nathan said. “I just decided to keep a positive attitude about it. I’ve been through it before. I keep the positive attitude that everything’s fine and there are many worse things in life.”
Staying positive requires overcoming more than the average teenage stresses. Nathan has missed 70 days of school the last two years but has taken every test and written every paper. He finished his first semester of schoolwork last week about two or three weeks behind everyone else.
The last two months have seen his best basketball. He has missed just one game since mid-December. He hit five 3-pointers in an upset of New Rochelle and four more at home in a loss to Mount Vernon.
“It’s really amazing. The condition is a very strange condition, but Tyler has really adjusted to it well,” said fellow senior Alex Squadron, the team’s starting point guard. “He’s an outstanding player. His attitude about it is great. He’s always excited to come back. He’s never down about what happened. He makes sure he looks forward and stays focused.”
As part of his routine with his father and mother, Holly, Nathan hones in by establishing a plan after every episode. He has to. Not only does he only wake to eat and use the bathroom during episodes, he cannot communicate other than to share one unconscious food craving or another.
“When I’m awake, it’s not really like I’m awake and functioning where I can go on my computer, go on Facebook, or communicate with people,” Nathan said. “It’s kind of like I’m in a zombie-like state.”
It’s the opposite once he wakes. He can return to practice a day after regaining consciousness and usually regains his skills and his conditioning within the week.
“It’s kind of like a switch turns on and I’m back to normal,” he said.
Nathan has never suffered an episode from May through August and has only had one in September. He missed the first tournament last spring for his AAU team, the Minutemen Athletic Club, but played the rest of a grueling season.
His spring and summer AAU schedule included two to three practices a week and three to five games each weekend for 10-plus weeks.
“It’s very, very intense. I’m physically exhausted at the end of it, and I’m a coach,” said Steve Marcellino, the Minutemen founder. “If his father didn’t tell me he had it, I never would have known.”
Despite Andy Nathan admitting he and his wife have reservations because of the unknown, their son might even attend school far from home, opting for somewhere warm in the hope it will ward away the cold in more ways than one.
If so, the Nathans will establish a plan to attack KLS rather than be limited by it.
“At an early age, he has accepted that his life is going to be a little bit different and he attacks it,” Andy Nathan said. “He’s accomplished a great deal in the face of that.”
“I know I can do it because I’ve done it before,” Tyler said. “And that’s how I keep the attitude I have.”