MANCHESTER — There was that afternoon in November when Beth wanted to take a nap after lunch. She lay down on the couch, and slept. When it was tea time, her mother Janine prepared two cups and called her. No answer.
“Beth?” What was wrong with her? For days, it went on and on. Beth got home from school and nothing, no Facebook, no laughter, no “Mum, I’m going out shopping” — nothing but the couch. Was she still weak from a throat inflammation? That had been weeks ago.
“Be-eth.” Janine stepped closer to her daughter. “If you’re tired, go to bed.”
She touched Beth’s shoulder. Shook her. Again. Beth blinked, couldn’t open her eyes. “Spiders,” she babbled in the voice of a child. He tongue wouldn’t obey her anymore. Janine was terrified: “I thought it was a stroke, a cerebral tumor.” No, nothing like that, the doctor said.
Beth kept on sleeping. No talking or shaking would wake her up. She slept, sometimes got up, stumbled to the bathroom or the fridge, ate and drank like she was in a trance, and went back to sleep. A neurologist from Manchester called the ambulance when he saw Beth, bringing her to a neurological clinic but they were clueless about her condition. In February 2011, after three months of sleep, and shortly before Beth’s 17th birthday, a colleague heard of a similar case — a teenager who didn’t want to wake up due to a rare condition, the Kleine-Levin syndrome, also known as the Sleeping Beauty syndrome.
“Like a fairytale but a nightmare”
Mostly teenagers suffer from it. The disease attacks when the patient sleeps — sometimes days, sometimes weeks or even months. When the patient wakes up during what doctors describe as episodes, he or she thinks, feels and talks like a child. Beth, for instance, resembles a 5-year-old. When the episode is over, patients live a normal life — until it strikes again.
Where does the illness come from? Nobody knows. It’s probably genetic and a wandering virus triggers it. What can be done against it? Nothing. The illness disappears, as miraculously as it started, typically after 13 years. “Sleeping Beauty syndrome,” says Beth. “It sounds romantic like a fairytale but it’s a nightmare.”
When patients waken, they often don’t know where they are. They are scared and suffer hallucinations. The disease weakens them. The brain gets damaged over time. It’s difficult for them to remember things, to stay focused. Many patients get depressed. It’s devastating, says Beth’s doctor in London. For teenagers, it’s hard to sleep away the time they’re supposed to shape their life and experience new things. The years are lost: no graduation, no job, no friends, no relationship.
The real fairytale
“The thing with Dan is unbelievable. My friends say: that’s the fairytale,” says Beth.
She is 22, Dan 25, they have been a couple for almost four years. He noticed Beth in a nightclub: the prettiest girl there, he says — lively, blond, a piercing. They both liked rock music and punk. Why had he never seen her before at “Satan’s’ — the best rock club in town? Well, she was sick. She sleeps a lot. Dan didn’t understand. Soon she had to go to the hospital for tests. He wrote her every day. How nice, Beth thought. She was bored; most of her friends had forgotten her. Of course, she didn’t go to school, she slept when others partied and she often responded to invitations weeks later. But Dan thought of her.
They met more often. What does he want, she kept wondering. Sex? No, that wasn’t Dan. He spoke little but shared his dreams with her: to get married, get a house, have children. Oh, and how would that work? What if he sees her when she’s sick?
“I’m thankful for not consciously experiencing it,” says Beth. “It’s terrifying.”
The hair messed up, mouth open, tongue thrust out, voice blurred, words jumbled. When Dan saw Beth like that for the first time, she woke up, saw him next to her, got scared and called her mother: Make him go away!
But it’s Dan.
No, out!
Nothing had ever hurt him that much, Dan says. Janine made tea for both of them. No, it wasn’t easy to live by her daughter’s side. Anything could happen, at any moment. She had quit her job to be there for her daughter.
The next day, Dan came back. Soon Beth wasn’t scared anymore, and she started to seek his company. It helped that Dan was about to become a primary school teacher. He knows how to deal with hypersensitive children, how to lower the voice when facing a child who has a fear of spiders.
“Beth might have two personalities,” says Dan, “but she’s Beth.” His Beth. The smart Beth who had better grades than him in school, who wants to be a child psychologist. The girl who plays the guitar and sings songs.
“The most beautiful thing is,” Beth says, “that he enjoys seeing me, anytime. He doesn’t have to, he can choose not to.””
Dan is still with her even though people ask him why. Even though he could have a girlfriend who is not sleeping on his birthday, who wants to celebrate New Year’s Eve or go on vacation with him. They only went away once since she slept two of the last three summers.
Spain was wonderful, Dan says. How Beth enjoyed the sun! Life with her is different, more intense.
“It’s not easy,” Beth says, “if you can’t remember what had happened last month nor what will happen next week.”
It teaches you how relative the notion of “sanity” is. For Beth, it’s not reasonable to plan months, or weeks, or even a couple of days ahead.
“And of course our love too is different,” says Beth.
There is a lot of sorrow, of course, sometimes they cry, out of anger, fear, and — when she comes back from one of her episodes — from relief. But there’s the good parts too. When she wakes up, she’s determined: up, up, let’s get started, catch up on the last weeks, meet friends, listen to music, go out into nature. This winter, for instance, when Beth was jumping around in the snow — “listen to how it crunches!” she screamed, and Dan answered, “Well, like snow” — but then he started to marvel at it too.
Their relationship is full of experiences like this: the warm sun, the high grass, the last bite. Their life is intensified. Out of their four years together, they have seen each other for maybe only one year but they made the most of it, laughing, hugging, talking openly.
“Without Beth,” Dan says. “I wouldn’t be that alive.”
What are their plans for the future? Marriage, a house, children, a job for Beth? More likely it would be isolation, unemployment, depression. Each episode is difficult: the fear when waking up, the lack of independence, the forgetfulness, the damage to the brain. Doctors say it can get better, disappear altogether. First the illness grows, then the body recovers. It may happen this year, or next year, or in six years if that average of 13 years is to be believed.
Beth believes she will probably never be a child psychologist. She could never focus that much, or for that long. But other jobs that are more hands-on, why not? Maybe become a filmmaker. Or a pediatric nurse. Like Dan, she loves children. To have her own, she still has some time.
“Life has taught me to be patient,” Beth says. “But as soon as we can, we’ll move in together.”
Till then, Dan comes to see Beth every day after work, even when she’s sleeping. He sits next to her, talks to her. Maybe she’ll wake up? She almost never does. She wakens when he’s left for work, in the mornings.
“And then I get all excited,” Beth says. “I can’t wait… And I get even more nervous. Do you know the feeling before the first kiss? After every episode that’s how it is. As if we’re kissing for the very first time.”
