In the “Don’t judge; you never know what someone’s going through” department…. Oh. My. GAWD! This woman is awesome!
Growing up, this young woman blogger, whom we’ll call Ezzie, was the picture of a “lazy, problem child.” Her weird behavior was just quirky, little kid stuff… the kind family stories are made of:
“Remember when Ezzie was six? She used to get up in the middle of the night, sound asleep, and pour cereal and milk into the cookie jar. And then she’d yell at us and not remember ANY of it in the morning! Thank GOD she outgrew it!”
Only, Ezzie didn’t outgrow it. In fact, when she turned 12, things got worse… and kept getting worse. No matter how much sleep she got the night before, she would fall asleep in her middle school classes and couldn’t focus when she was awake. When she tested negative for ADHD, people around her started assuming she was just lazy, including her teachers. Soon, her motivation plummeted, and she just gave up trying to pay attention in class.
But in time, despite dropping out of school in 9th grade and being unable to stay awake to earn her GED, she motivated herself to continue her search for answers. After her father was diagnosed with sleep apnea, she talked to her doctor to find out if that might be her problem, too. What the sleep study revealed was astounding:
In the four short hours they were able to monitor Ezzie’s sleep, she woke up unconsciously 133 times and stopped breathing 199 times for an average of 15 seconds!
She had surgery to her throat–a tonsillectomy and uvulectomy (which removed that dangle-y thing in the back of the throat), knowing that, if it didn’t work, she’d have to face sleeping with a CPAP mask (which forces air into the throat)… or more surgery. Like any normal 17-year-old, the thought of going to bed with an unromantic, uncomfortable mask didn’t thrill her. Neither did the idea of having part of her tongue cut out. Go figure.
So, she went on “living” her life, waitressing and chugging coffee. But shortly after her throat surgery, she became pregnant with her daughter. Wanting a better life for her little girl, she set out to improve her lot in life, eventually landing what she thought of as her dream job–working in a wholesome office environment. Her “falling asleep problems” didn’t stop, but she was so good at her job that she was able to mostly sneak by and handle things. But after coming out of a trance one day, having unconsciously written a string of actual words all over an invoice on which she had been working so diligently, she realized that something was seriously wrong. And she needed to find out what it was. Her daughter was depending on her.
Finally, a doctor diagnosed Ezzie with narcolepsy.
Now, at this point, you’d think her story was on the upswing.
Nope.
She had severe reactions to every treatment they tried–to the point where she ended up being repeatedly hospitalized. Her future had never seemed more terrifying. But she refused to quit looking for answers. She decided, instead, to seek a second medical opinion.
It’s never a good sign, however, when a neurologist looks at your chart and only says, “Wow.”
But within 15 minutes, the wonderful neurologist at the University of Maryland Medical Center restored her hope that something could be done. The doctor explained that for any drug treatment they’d try, they would have to start with a very low dose to assess if Ezzie could tolerate it, and then gradually increase dosage until the narcolepsy was under control. Pretty soon, Ezzie was on a treatment that’s worked for her, with a personalized prescription for Adderall.
Today, Ezzie is working toward her GED, hoping to, one day, climb up the corporate ladder. More than anything, she wants to set a good example for her daughter.
Now, this is one woman any corporation should snatch up, pronto! With her determination and “never quit” attitude, she’d be an unstoppable asset!
Bravo, Brave, Sassy Narcolepsy Blogger, Ezzie! Bravo!
And if there are any hiring managers out there, pass this story around! More people need to be educated about narcolepsy… and this girl deserves a great job!
You can, and should, read her entire story, in her own words, here.
