By Sunni Bean
SUNNI 1: It was the summer of 2016, and Noemie was 19. She went to a music festival with some friends in Mayenne, the French countryside. It was on a farm, and they slept in tents for three nights. Afterwards, they returned to her friend’s house. And she was really tired after.
NOEMIE 1: But you can feel after a weekend of not sleeping much, and partying
SUNNI 2: But a couple days later, Noemie couldn’t help but notice something was off.
NOEMIE 2: Starting from the second day, I just started to feel super, super, super tired. And I remember making a game with her brother and watching movies, but that I was really not feeling normal. That I was feeling, kind of in another dimension, if I could say like?
SUNNI 3: And she wasn’t clicking back.
NOEMIE 3: The more the day was passing, the more I was feeling apart, the more I was feeling away, from what was happening around.
SUNNI 4: She finished up classes for her first year in undergrad, but still had a couple of weeks until finals. She returned to her parents house a few days later, where she was going to study. This is her mother, Sophie.
SOPHIE 1: And then she begins to sleep.
SUNNI 5: Days were passing…
NOEMIE 4: Then I started sleeping, sleeping, sleeping, sleeping
SUNNI 6: She spent over 20 hours a day in a deep, deep sleep.
SOPHIE 2: She keep on sleeping and sleeping and sleeping. I told Noemie, Noemie get off the bed! Noemie get off the bed! It’s okay–after maybe one night, and one morning, and one beginning of an afternoon. I tell her, ok it’s enough! If you don’t even take any drugs–now let’s go! You missed, uh, she had exams! She had exams!
SUNN1 7: But Noemie just couldn’t. She was so tired.
SOPHIE 3: It was not the same girl.
SUNNI 8: People seemed like they were wearing masks. Controlling themselves. But she just couldn’t. She was acting like a child. Singing Disney songs, and watching Harry Potter. She did everything in English, hoping her Mom wouldn’t understand.
NOEMIE 5: Like you’re here. Definitely here. But in the meantime, you’re outside and watching.
SUNNI 9: When she tried to speak, she couldn’t find the words. It all just seemed so odd.
NOEMIE 6: My perceptions of the senses was really different.
SOPHIE 4: It is exactly like if she hasn’t any sensation.
SUNNI 10: She ate compulsively, and curled up with big blankets on hot days. When she was awake, she felt like she was asleep.
NOEMIE 7: It’s like you’re in a dream, but in a bad dream.
SUNNI 11: And Sophie felt like she was in one, too.
SOPHIE 5: It was something awful for me again to have to be again, like the mother of a little child. It was not at all what–I didn’t want anything like that.
SUNNI 12: They were stuck in their personal nightmares, together, but totally alone. Sophie had always made it a priority that her two kids were independent.
SOPHIE 6: Like we were in a democracy.
SUNNI 13: But despite her efforts…
SOPHIE 7: It was not so easy for her.
SUNNI 14: The family lived on a farm in Normandy.
NOEMIE 8: It was really difficult because, I never, I never really had friends.
SUNNI 15: But then, at 10, the family moved to a nearby city, Rouen.
SOPHIE 8: So what happened is she took that freedom.
NOEMIE 9: And I wanted to claim it totally. I could go to museum, I could go to listen to concerts. I could go out and party, I was able to go to my friend’s house because I had friends.
SUNNI 16: By university, Noemie was objectively popular. She was in the student government, and got good grades too. She was sure she’d do a year abroad soon. Now, she was dreamy, drowsy, child-like, and bed ridden.
But she knew, as much as it felt like a dream, it wasn’t. And they could see her. And she couldn’t stop them. Noemie was unrecognizable to herself, and everyone else. They would later learn this is what an episode of Klein Levin Syndrome looks like, also known as sleeping beauty disorder. And Noemie had it. It’s one of the rarest diseases in the world, affecting 1 in a million people. There is no known cause, or cure.
SOPHIE 9: So it begins without beginning! Because there is not. It was so strange. Really, I was very disempowered! How can you say. I didn’t know how to do anything.
SUNNI 17: The rare disorder causes spells of deep sleep and dissociation, for days to weeks on end. Some more often than others. It usually affects men during adolescence but patients usually age out.
When Sophie read the description of the disease,
SOPHIE 10: Both, we thought — it is this! It is that! There is not a lot of illness like that, so…
SUNNI 18: she recognized her daughter immediately. But since the disorder is so rare, when Sophie and her husband brought Noemie to the doctors, they were brushed off as anxious parents who’d been reading too much on the internet.
And weeks were passing.
Sophia didn’t know who to turn to. She mostly stayed home, Noemie stayed in bed. But her friend’s had started to worry. They hadn’t heard from her, and they had exams soon.
But when her mom tried to help her study…
NOEMIE 10: And my brain being totally outside, and nothing could enter my brain because the only thing I could think about was the people were weird l and how I was weird most of all
SOPHIE 11: It was so strange because I think she was not able to integrate anything, anything
NOEMIE 11: And the only thing I wanted to do was be in my bed and sleep.
SUNNI 19: But, Sophie and Noemie’s friends worked together to get her to Lille to her school, to take them. She got a 6/25 on two exams. Which is bad, much worse than her normal standards, but not that bad considering that she was basically sleepwalking. At least they were over.
But Noemie still wasn’t herself.
NOEMIE 12: So I was just in the middle of something I didn’t know what, I don’t know if it was going to come to an end at some point. I didn’t know if, yeah, that it was going to finish.
SUNNI 20: And then…
NOEMIE 13: There is this moment in between where you start to realize, at least at night, and that your mind wakes up a bit.
SOPHIE 12: She become better and better.
NOEMIE 14: And suddenly you realize completely. And now, and starting from this moment, everything changes
SUNNI 21: It was over. Twenty-two days in all, twenty two terrifying days. Noemie couldn’t sleep. She had so many questions. And she didn’t know how to process what had just happened to her.
NOEMIE 15: Because it’s really sad. I mean, and no one can get it, because no one is going through what you’ve been through.
SUNNI 22: It made her feel vulnerable, alone, out of control. Even though she knew it wasn’t her Mom’s fault, she felt angry with her. It was just so disempowering.
NOEMIE 16: You’re giving them access by seeing you in this condition to something very intimate. Because, even if it’s not really you, it’s still you.
SOPHIE 13: Being seen by people without knowing what you do, what you say, what you are/
SUNNI 23: But they didn’t want Noemie to stop being present for the rest of her time too. She had to move past it. And reconnect to who she’d been before.
SOPHIE 14: And we decided, you are not going to change your life Noemie. It is one parenthesis, and it will stay one parenthesis.
NOEMIE 17: Like I was 20, and if I had decided from this moment, that I just couldn’t go out anymore, that I had to sleep well, not be stressed. That I have to stop partying which I really loved at this moment in my life. For me, I would have felt really, not oppressed, but…
SUNNI 24: She fell into one more episode of sleep, nine months after the first. By then, she had an official diagnosis, and he was about to leave for her year abroad in Romania. She decided to dive in, totally.
Noemie went on to spend a summer in Gabon, a semester in Spain, and finished two masters back in Lille.
She still gets scared when she’s super tired, and makes sure she gets enough rest and exercise, especially before long weekends. And though she’d rather not, she makes sure somebody around knows what to do.
After 6 years without an episode, the condition is considered cured. Noemie just passed the five year mark.
And she’s starting to be less afraid.