I know I’m not alone when I say that some days I would Venmo a higher power a king’s ransom for 20 minutes of uninterrupted REM sleep under my desk. There are even some days–those ‘I got blind drunk and consumed illegal narcotics last night for no reason’ days–when I bet you could bully me into giving a senior citizen an OTPHJ for a good snooze. Until completion.
Ew.
Point is, when I came across this story about a girl whose slept 75% of her life over the past five years, I was like ‘samesies.’ But then I read the story of her deplorable, incurable syndrome and felt like an insensitive prick for making levity of the situation.
Up until her 17th birthday, Beth Goodier was a healthy, outgoing, popular girl with dreams of going to college to pursue a degree in child psychology. But that dream was quickly shattered five years ago when Beth fell asleep and didn’t wake up suitably for FIVE YEARS. According to Daily Mail, Beth, now 22, slept 22 hours a day and would only wake up for food, drink and to use the bathroom.
https://twitter.com/iamtemmyfrosh/status/803473132283494400
After tests for brain tumors and hemorrhages were ruled out, doctors diagnosed Beth with Kleine-Levin syndrome (KLS), more commonly known as Sleeping Beauty syndrome. The extremely rare disease has only been reported 500 times across the world (though many more cases have likely gone diagnosed), and primarily affects teenagers for an average 13 years.
Beth is five years in the thick of it and her mother estimates she’s slept for 75% of that time, and is currently in a two-and-a-half month sleep episode. It should be noted that nothing–not drugs or loud noises, or a Sharpie mustache to the upper lip will wake her.
Beth’s mother, Janine, expressed the severity of her daughter’s situation after she was forced to quit her job to care for Beth around the clock.
‘It is like night and day. She might wake up tomorrow and then it’s a race against time to live the life she should have had. She rushes off to catch up with her friends and get her hair done. But no one knows when she might fall asleep again.’
One of the most difficult side effects of the disorder, besides sleeping through holidays and birthdays, is that every time she wakes up, she doesn’t initially realize any time’s past. Says Janine:
‘The most horrible symptom is her confusion. When she wakes for a few hours a day, she does not know where she is and becomes very agitated.
‘The toughest year was when her friends finished their A-levels and went off to university, because Beth knew when she woke up that it should have been her, and that hurt her badly. And when she hurts, I hurt.’
One dude that deserves a Medal of Honor is her boyfriend Dan, a 25-year-old primary school teacher she met during an ‘awake’ phase three years ago, according to Daily Mail. Dan comes by the house to sit with Beth and talk to her while she’s asleep and await the chance to speak with her while she’s awake. ‘He is a good man,’ says Beth’s mom.
Dr Guy Leschziner, a consultant neurologist and leading expert on the disease, says the numbers of reported diagnoses are rising, as the syndrome was previously misdiagnosed.
‘In the past, milder cases were blamed on teens being lazy and swinging the lead. Otherwise, they were viewed as psychiatric cases or having symptoms of a bipolar disorder.’
Just a dogshit story for everyone involved. I can no longer sleep in knowing that there are others out there who would kill for time awake. I’m setting my alarm tomorrow morning for NO LATER that 11 am.
[h/t Daily Mail]