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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.




Narcolepsy Support:


Narcolepsy Support via Facebook


Daily Strength/Narcolepsy Support


Organized Wisdom/Narcolepsy Support


18 scopers scoping:

VioletSyn said...

I did not know about this lifelong pain....you are one strong woman and even stronger for sharing this with the world!!

Butterfly Effect said...

I can't even put into words how I'm so proud of you. I know it was hard to write this blog. You are so brave and I love you my Kiwi. Continue to educate us one person at a time. We are ignorant. It just all depends on which ones choose to learn more. Love you!!!

P.S. I've already asked about the possibility of meds being able to help control the symptoms. I know it hasn't been successful with you due to the side effects. What are the statistics on others concerning meds to help control this illness?

Tamara said...

Wow. I happened upon your blog from a link one of my followers posted. As I sit here almost on the brink of tears, I thank you for educating me. As you mentioned, everyone has seen the movie and heard the songs mocking the condition but rarely do you know someone who has been diagnosed so it remains a joke. When there is a face to connect it, it is real.

I know this must have been hard to write as I have a condition that very few people know of and I felt ashamed for so many years. It is simply a short fourth toe and I hit it like leprosy. At age 30, I just bought my first pair of flip flops from Old Navy and almost cried when I saw someone looking at my foreign toe. I commend you for coming to grips and enlightening the world on such a serious disorder. I will spread the knowledge Sis...

Divaprocessor said...

This was very BRAVE and Inspirational..when I first met you it was confirmed what I already suspected...you are a Beautiful..Warm and Very funny Woman and anyone that choose to judge you by this stone will lose out knowing the best pebble in the stream...I understand your disorder but that is all it is a disorder its not YOU and I am so proud and honored to know of you and to have met you...This is pretty deep but not so much for me to swim...Love you Sis

CurvyGurl ♥ said...

Hey chica! I have to plead ignorance because I've never taken the time to learn about narcolepsy, even though a close cousin also suffers from it. You've definitely given me a better understanding, I knew it was a documented disorder but thought she was exaggerating *hanging head in shame*. I now realize what a struggle it can be never knowing when you'll suddenly fall asleep. I hope they find an effective treatment for it soon. I appreciate your sharing!

Luvologist said...

This took a lot of courage. Bless you and be well...

LYKEBUDDA said...

Wow sis...I have insomnia and I'm sure its less frustrating than falling asleep when ur not trying to. A few yrs back I had a boyfriend who suffered from narcolepsy and would fall asleep on the freeway coming from outta town and a few time I had him pull over and I drove he tore up many cars but thank God noone else got hurt. I thank u for sharing this part of u with us and educating us about this disorder. Blessings sis.

Da_Kween said...

@Violet~ Yes, I've been struggling with it for a number of years now. I went from a straight A stellar student to a kid who skipped school to avoid the pain of taunting.

@BE~ Thanks sis...I needed to do this. I truly think it is one of the reasons people don't know me as well as they think they do...and why I am often frustrated with the people around me. I don't know the statistics of others' treatment. That is something I must look into.

@Tamara...welcome to the Kaleidoscope! ((HUGS)) I commend you on even BUYING that pair of flip flops and wearing them. That takes guts and that is the beginning of a life of shaking off the shame. Thank you so much for commenting. Be encouraged and please return! :)

@Diva~ Thank you Sis...I love you back. You saw first hand how quickly I can go from being lively to being tired. Love that I met you, too! ((HUGS))

@CG~ It's okay. You admitted that you may have overlooked the severity of your cousin's claims...and that in and of itself is a step in the right direction. Acknowledgement and sensitivity. ;)

@Luvy~ Thanks. I'm trying to grow as a person. ~blessings returned~

@Budda~ I'm so glad you're ex managed to go unharmed as well as others. That is scary. I will probably never drive. My fears of causing harm are too great. I pray you get relief for your insomnia...I had a weekend of no sleep and it drove me crazy.

ABoyd378 said...

*Biggest HUGS and KISSES*

Your Courage in speaking on what is going on with you is Beyond Phenomenal. And I'll admit that you got me misty-eyed; That, in my eyes, is a Beautiful thing.

My Heart goes out to you as I Admire your Strength and Drive to continue to be Who you are; Wonderful in every sense and definition of the word.

rainwriter jones said...

I would have never known you had this disorder if you hadn't mentioned it. How frustrating it must be to live with this condition, but I'm glad you at least know that you have it, and that you can manage some of it, too.

Don't let it get the best of you. With you being the strong woman I've grown to love, I know you'll be victorious.

Da_Kween said...

Thank you Andrew. I really appreciate it. Your strength is equally admirable. God bless to you and thank you for reading...

...Reading everyone's comments has brought me to tears and confirmed that it was right to share my struggle. THANK YOU and blessings to EVERYONE who has read and will read this post.

Alovelydai said...

Aww sweet Kween...I know you've had a bit of blogging writers block in the recent past & I was just so happy to see your blog in my reader!! Thank you for sharing & educating us on a topic that most people assume they understand but don't. I applaud you for opening up...I know it couldn't have been easy. You also make a beautiful point...use your gift as a excellent word smith to spread the info about Narcolepsy. Sometimes the best thing to do is to bring awareness b/c it lessens the ignorance & stigma associated with it.

Violetwrites said...

Wow - what a lot to go through and you found the time to say you're sorry for my loss. Thank you.
I am sorry for your suffering too as result of your illness. I guess it's as the buddha said, life means suffering and no one is exempt.
Thank you for your sweetness. I appreciate your thoughts

Da_Kween said...

@Dai~ I thank you my lovely friend. I will do my best to bring awareness and make my SELF aware of what i need to do. God has given me a platform and I've been squandering it.

@Rain~ Aw, I love you back. I'm a trooper, Korky. I have good people in my life. THAT is key for me. My support system has become greater in the past few years. Thank you for your support :)

@Violet~ My visit to you was no problem. I've been dealing for almost 27 years...your loss is fresh. Thank you for visiting and lending your kind words. Be blessed.

Danielle said...

Thank you so much for sharing your story. It took a great deal of courage to share this with friends and strangers. I love you more & more..Can't wait to see you Buttercup

Mahoganydymond said...

I love my Kali... I never thought I would see the day that you would write this. I am glad that you did.. Maybe this will help a lot of people out here that suffer from it..

Now doesn't it feel good to talk a little about yourself..

I love you...

Da_Kween said...

@Danielle~ Thank you and I love you back...I had to put on my big girl pannies. lol I can't wait to see you soon!

@Mah~ I love you, too...and yes, it feels good to share something personal. I DO share things, but I don't feel the need to share EVERY thing. The Internet can be brutal.

fabulous bebe said...

thanks for sharing this....i have lately been wondering if i should be doing the same thing :)

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