Sleeping Butterfly

I thought long and hard about writing this blog. I'm a private person for the most part. I share parts of my life that I can handle scrutiny with...but, sometimes the truth just needs telling. Sometimes, your story carries the soul of healing and helping and you MUST be part of a testimonial. It's part humility and part Samaritan. I was discouraged once that I might be allowing people too far into my life, but this life isn't lived fully by protecting EVERY thing about one's self. How will people ever know you deeply if you're not even the LEAST bit vulnerable. So without further adieu...


I am a Narcoleptic...


I was diagnosed in February of 1994 after being tested in an overnight sleep study in Bellevue Hospital, NYC. I was strapped to an EEG machine and monitored for a day and a half. The final conclusion was "severe Narcolepsy with a mild case of sleep apnea". I also suffer from the "accompanying" disorder Cataplexy. I had been working at what was then called NYNEX and what is now Verizon for almost 2 years. I was terminated for reasons associated with my disorder in December '93 and subsequently was introduced to the possibility of Narcolepsy being the culprit. Before that...I had gone nearly 10 years undiagnosed...MISdiagnosed. At one point my mother thought I was an "escapist"...needing sleep to escape my problems, but that was the furthest from the truth. At 11 when my symptoms began...I was your average pre-teen. Suffering from angst related to parents, siblings, and school. Not that much different from anyone else...at least not on the surface.


Narcolepsy was hard to diagnose, mostly because it isn't something you can detect through a physical or drawing of blood. It is a chemical imbalance in the brain. Hypocretin is a critical chemical in the brain that aids in regulation of sleep and REM. REM (Rapid Eye Movement) is the dream state...and this stage of sleep occurs usually an hour or more into sleep on average. With a Narcoleptic, this stage is entered into almost immediately upon falling asleep. It is unnatural for a person to go into such a deep stage of sleep in such a short period of time. This, along with cataplexy can end in serious and dangerous situations. Self injury is very common in Narcoleptics. Falling down can be very scary when you consider where you can fall, and what you can hit on the way down. I have on several occasions fallen asleep while walking. Do NOT confuse this with sleep walking. Somnambulism occurs DURING sleep...what has happened to me happens while I have been walking and THEN fall asleep. I almost got hit by a city bus one year...making it to safety by what can only be described as God's grace. I should have been in the driver's blind spot, but he saw me and blew his horn. It was one of the scariest moments to date. I also had another instance of walking into danger when I was 14 and my baby cousin was 2. He and I were walking home from the daycare center and I fell asleep just as we were reaching the curb. This VERY smart 2 yr old called my name (as best as he could say it) and said, "Tali...street". I cried the rest of the way home. What would I tell my aunt if I had gotten my baby cousin killed? I had no answers for what I was suffering from...so what would have been a sufficient enough reason...as if there could be any way.


~exhaling~


One of the hardest things about being Narcoleptic is people's insensitivity. If you've ever seen Deuce Bigelow...you'll know what I mean. Or if you can remember the lyrics to Jay-Z's "Girls Girls Girls" where he spoofs the movie in his video. I didn't find these things funny at the time. NOW, I can laugh. I even "use" it as a running joke for when I want to say no to someone or want to claim ignorance...I hang my head, close my eyes and snore audibly. LOL


...but, really. People need to understand the struggle myself and other Narcoleptics go through. *sidebar* [I am validating my own disorder and struggle as I type this blog. I have to keep "adding to dictionary" the terms I am using to describe Narcolepsy] People typify a person with my inability to remain awake and vigilant...as lazy. Inept. Depressed. None of this is true. No one understands what it means to do something that exerts your energy within minutes. Or what it means to fall asleep and wake up hours later thinking its been minutes...or fall asleep for minutes and feel like you've slept the day away. Try not being able to keep your eyes open at all. Not recalling phone conversations or even recalling how you got into bed at all. It's SO hard to focus. I am a writer and I hate that at times when in the middle of an onslaught of inspiration...I can't even remain awake long enough to type and save. A good book can take longer than usual...and drives to places far and near often end in me awaking upon arrival.


I've had people wake me up in the middle of whatever...wherever I am...with, "You can't do that...don't fall asleep. Stay up." THAT is the most frustrating of statements. That's like telling a wheelchair bound person, "Don't just sit there...get up." It is SO insensitive...but, I realize that I'm not doing my job...my part. I'm not educating people the way I should. I tell people individually as they get to know me...but, I haven't been using my very accessible forums like this blog and my Facebook and Twitter pages to bring light to this disorder for which there is no cure. Here are some very important facts about Narcolepsy:


~It CANNOT be cured. There is no way to supplement the chemical missing in this equation, but there are treatments and lifestyle changes one can make to ease the episodes.


~It is NOT related to depression. Chronic sleepiness isn't relevant to whether someone is going through a hard time...although...


~...Emotions bring on episodes of sleep and cataplexy. Strong emotions, whether it be  laughter, anger, sadness, etc...can bring on temporary paralysis (cataplexy) causing the motor skills to slow and the speech to slur. I have gotten riled up either way and needed to immediately lie down and sleep it off.


~It is INVOLUNTARY. People take for granted that they can control when they fall asleep, but even in a worst case scenario for the average person...extreme exhaustion cannot always be fought. Imagine someone who cannot control it at all.


~"It is estimated that narcolepsy affects as many as 200,000 Americans, although fewer than 50,000 are diagnosed. Narcolepsy is as widespread as Parkinson's disease ormultiple sclerosis (MS) and more common than cystic fibrosis, but it is not as well known. Narcolepsy is often mistaken fordepression, epilepsy, or the side effects of medications." --eMedtv.com


Think of how many people who "fell asleep at the wheel" and were thought to be drunk, but had no alcohol in their system. Or people who were thought to have been high or weary from over-medication. Narcoleptics are out there...and unfortunately... go undiagnosed.


~Narcolepsy CAN change your social life. I, for one didn't get to segue from adolescence into adulthood with the rite of passage known as getting a driver's permit. My mother, in spite of NOT knowing at the time what my issue was, refused to allow me behind the wheel of a car. It wasn't until I was 35 that I learned how to drive while on a trip to the south. I still do not drive. I also do not take public transportation alone unless it is necessary. I usually have to time my arrival with an alarm and keep in touch with whomever it is I'm visiting. I did indeed make it from New York to Alabama all by myself in 2008. Proud of that.


Sometimes, the stress of this disorder can make me feel alone. I experienced an entire part of my life where no one knew what I had and it made me the butt of jokes and ridicule. I hate repeating myself to someone who INSISTS that I can control my sleeping habits. It's enough to want to put a hole through their head and watch THEIR hypocretin drip. LMAO...see how you like it when YOU can't stay awake!! 


I will answer whatever questions you have for me. I'm sure I left out things...but, um...dudes? PLEASE do not ask me if I've fallen asleep having sex. That's so crass. LOL (The answer would be NO...but there were a couple of guys who I SHOULD have fallen asleep on) *GMAO*


Thank you for reading...spread the knowledge. Please and Thank You.




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