November 6, 2013

Facing your own mind

Coahulla Creek lineman Hunter Reed is overcoming his narcolepsy

Devin Golden

— Hunter Reed stood in front of some of his Coahulla Creek High School football teammates and told them something that for so long he held tight, like a football he wanted to keep.

“I have this thing wrong with me,” Hunter said in the locker room in 2012. “It’s called narcolepsy.”

For as long as Hunter can remember, he has wanted to sleep. That’s what happens when someone has narcolepsy, a brain disorder than affects a person’s sleep cycles and prevents him or her from getting a good night’s rest. It is similar to someone without narcolepsy only having three or four hours of sleep.

Still, Hunter has played football since he was 5. Now a senior, he has started on Coahulla Creek’s offensive and defensive lines the past three years. And despite difficulties keeping his eyes open — both on the field and in the classroom — he calls his disadvantage an “advantage,” which started when he found the strength to reveal his disability to his coaches and peers.

‘What is narcolepsy?’

Hunter is asleep the same amount of time as anyone else, but he only rests for a limited time. Hunter said he doesn’t dream, but his mind is always active when sleeping. He may go through a deep sleep “once or twice” per month and often wakes up with “a massive headache.”

“When someone goes to sleep or an average person goes to sleep, they go through seven ‘sleep rounds,’” Hunter describes. “I only go through one or two. So I wake up really tired and throughout the day, I’m really tired.

“I don’t think I’ve actually been rested.”

His mom, Wendy Voiles, said Hunter often talks in his sleep and sometimes sleepwalks.

“His mind is awake,” Wendy added, “but it’s like he’s paralyzed.”

Those descriptions fit the symptoms of narcolepsy on the National Institute of Neurological Disorders and Stroke website, which states: “Narcolepsy can greatly affect daily activities. People may unwillingly fall asleep while at work or at school, when having a conversation, playing a game, eating a meal, or, most dangerously, when driving or operating other types of machinery. In addition to daytime sleepiness, other major symptoms may include cataplexy (a sudden loss of voluntary muscle tone while awake that makes a person go limp or unable to move), vivid dream-like images or hallucinations, as well as total paralysis just before falling asleep or just after waking-up.”

Basically, it would be hard to perform normal, everyday tasks as effective as most because of constant drowsiness. Staying awake in class, for instance, is a struggle.

“During school, I’ll have to get caffeine to put in my body,” Hunter said. “So I’ll get a drink or something like that. If I can’t get up or only have a certain amount of time to do something, I’ll either bite my lip or have something to chew on. I won’t fall asleep chewing on something.”

Staying awake during practice or games is a struggle as well. Lined up on the field, the fatigue could slow Hunter’s reaction abilities.

“There are times my body and mind don’t let me do things,” he said, “but I can catch up.”

Hunter takes methylphenidate, a drug which his family had to find after a few trial-and-error attempts with other medicine. His stepdad, Bryan Voiles, was the first person to question whether there was something wrong. Early trips to the doctor equaled misses on the diagnosis. It wasn’t until seventh grade, after Hunter did a sleep test, when doctors finally answered the questions.

“In third grade, his teachers sent a letter home thinking he had (attention deficit disorder) or (attention deficit hyperactivity disorder) because he always slept in class,” Wendy said. “Narcolepsy isn’t the first thing people think about. So I took him to the doctor, and the doctor even said, ‘OK, We think he has ADD, not ADHD, because he isn’t hyper. So they put him on medication.

“That was the end of third grade. He had fourth grade, fifth grade and sixth grade. The medicine would work so-so. He was still falling asleep in class. Seventh grade came along and we went for a physical for football. He had to run in place and then sat on the chair. Well, he fell asleep while the physician was talking to him. He asked if we had him checked for narcolepsy, and I asked, ‘What is narcolepsy?’ So we went to T.C. Thompson and they did the (sleep) test, and he had it bad.”

Drowsy secret

Before he was diagnosed, Hunter said everyone thought he was lazy and “had really bad anger problems.”

“He would fall asleep even before we got out of the driveway,” Wendy recalls. “He’d be on the sidelines falling asleep when he was younger. He loved the game so much, he did whatever he had to do to keep playing.”

After leaving Westside Middle School, Hunter began his high school years at Northwest Whitfield with a big burden. No one beyond his family knew about his disability — not coaches, teammates or non-football friends. And for his freshman football season, it stayed that way.

“I didn’t talk about it,” said Hunter, who is also a discus and shot put competitor for the Colts’ track and field team. “I didn’t want anyone to know. I thought if a coach knew it, then they’d think, ‘Well, he’s got this and won’t be able to play.’ Then the players — they wouldn’t make fun, but — they’d say, ‘Oh, that’s a disadvantage. You suck.’ Something like that. I didn’t want any of that to happen.

“Going to Northwest for high school football was a whole different level. You practiced longer and hit harder. ... I thought my body couldn’t handle it. I wanted to quit.”

But Wendy convinced him otherwise, and Hunter listened. Still, he finished the entire season without telling anyone of his condition.

“By the end of freshman year (after football season), his coach (John Linder) did know because he was Hunter’s math teacher,” Wendy said. “I sent a note to all his teachers letting them know he didn’t want any of it discussed but he does have this. Every year, I send a letter out.”

But a new high school was opening in the Whitfield County School System. Coahulla Creek would open its doors August 2011 for Hunter’s sophomore year, and he thought it wise to make the move.

“When Coahulla started, he thought he’d move there because it was a smaller group of kids,” Wendy said. “That would mean one on one and that would help him more — in the class and on the field.”

Then Wendy convinced Hunter it would be a smart idea to tell teachers up front, and he did the same with the school’s football coach, Jared Hamlin.

“Coach and I spoke one on one,” Hunter recalled. “He said, ‘I know you have this disability. I have this disability myself.’ He was dyslexic. He said, ‘Everyone has a disability. It may not be a brain disability. It could be someone’s home life. Everyone has something wrong with them.’”

Hamlin remembers the conversation — not in full, he said, but he offered the perfect advice.

“I told him I understand having a disability,” Hamlin said. “I also said you can’t allow the disability to affect you.”

Eventually, Hunter told many more of his peers.

Accepting help

Another obstacle was the mood swings associated with being tired. Wendy referenced about Hunter being moody, and even getting into an argument with his friend, Tyler Warnix. Hunter repeated a line saying his friends don’t know what is going on, what he is dealing with, and shouldn’t try to encourage him thinking they know what he is going through.

Moving beyond that phase had a lot to do with Jerry Bruce Hennon.

During the spring semester of Hunter’s junior year, the Coahulla Creek football team went to Miracle Field of Whitfield County for its inaugural season. At the Miracle Field, children and adults with a physical or mental disability play baseball on a synthetic rubber field to ensure the safety of all participants.

Jerry Bruce, now 7, was one of the players, and he was paired with Tyler. Jerry Bruce’s mother, Lisa Hennon, said her son has hypoplastic left-heart syndrome, which means he has half a heart. During the first of multiple open-heart surgeries as an infant, Jerry Bruce suffered strokes and the left side of his body doesn’t properly function, requiring a wheelchair and walker at times.

On the field, Jerry Bruce uses a walker.

“He thinks he can do anything,” Lisa said of her now second-grade child, “and now is just noticing he is slightly different.”

Hunter’s job — as is for anyone who volunteers on the field — is to help Jerry Bruce field, run the bases and bat.

At first, Jerry Bruce didn’t want any help.

“He was rejecting me,” Hunter said. “I thought, ‘What can I do to help this kid out?’

But as time went on, Hunter found the magic words. He told Jerry Bruce he isn’t interested in being his buddy. He wanted Jerry Bruce to be his friend — he wanted Jerry Bruce’s acceptance.

“Later on, by the middle of the game, he was holding my hand,” Hunter said. “I was like that. I didn’t want anyone trying to help me. Now I’m more accepting of people’s help. Jerry Bruce had a lot to do with that.”

So much so that when Coahulla Creek held senior night for its football team two weeks ago against Ringgold, Hunter had a special request. He wanted Jerry Bruce to accompany him onto the field.

“It didn’t realize what an impact Jerry had on Hunter until his mom called and asked for Jerry Bruce to escort him on senior night,” Lisa said. “It didn’t really hit home until I saw him walk out with Hunter and his family on the field and it announced Hunter’s family and then said ‘his special friend, Jerry Bruce.’

“That made me tear up.”

Team story

Warnix, another senior offensive and defensive lineman for the Colts, is Hunter’s best friend and has been since their sophomore year.

One day, during a summer workout prior to the 2012 season, Hunter took center stage and told some of his teammates of his disability.

“I was shocked,” Tyler remembers. “I never noticed it. (Other people) had no idea, either.”

But the reaction was mostly understanding and accepting. Hunter, who was timid about revealing this topic, was shocked and more able to open up to others about the disability.

“It was a lot more positive than I thought it would’ve been,” Hunter said. “If I had the choice again, I would go to Coahulla Creek. There were so many more things I learned.”

That allowed Hunter to shed the lazy label. At 5 feet, 9 inches and 240 pounds, he plays right tackle — the blind-side spot for left-handed quarterback Blaine Williams — and center. On defense, he plays defensive end and nose guard. With the Colts at 2-7 this year, Hunter has made seven solo tackles and assisted on eight additional tackles.

He has learned tricks to keep himself attentive. Whether it is slapping his head, swaying back and forth or chewing his mouthpiece, Hunter started a system that he still uses whenever feeling tired.

“One thing he does is he puts water on his face an awful lot,” Hamlin said. “He has rode hard with it. He doesn’t use it as an excuse. That’s maturity. He understands what is going on and finds a way to solve it.”

Aside from his narcolepsy, the biggest challenge regarding football was a high-grade 2 sprain in his right knee. He suffered the injury during spring practice prior to his junior season, which was the first varsity schedule for Coahulla Creek. He missed the entire offseason but returned for the regular season, where the Colts won their first game against Murray County and finished with a 2-8 record.

Off the field, there are and will be other challenges for Hunter. Getting out of bed is still tough. Driving long distances is a scary topic for his mother to talk about.

“We don’t let him drive long distances,” she said. “His doctor hasn’t pulled his license yet. But, me as a parent, I don’t know.”

Wendy said narcolepsy often times gets worse as people with it get older. When asked how or if he would drive as an adult, she responded, “We don’t really know.”

“They told me there weren’t any health effects for him,” Wendy said, “but it does get worse as you get older. They told me there are people who would be walking and just drop. He’s not that bad, but there are cases like that.”

However, one thing has progressed — the effect it has on Hunter’s self view.

“It’s not a disability; it’s more of an advantage,” he said. “Someone who doesn’t have anyone wrong with them, I can still beat them. ... I can work just as hard as them, if not harder.

“I am the underdog. I’m cool with that. I love the underdog. In every ‘Rocky’ movie, he takes so many shots and then comes back and whoops them. I can take all those shots and come back.”