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.
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.
Daily Strength/Narcolepsy Support
Organized Wisdom/Narcolepsy Support
I have heard people say so often, “I don’t tell my business”. Trust me, I get the “principle” of the thing. I think that nowadays, being on the Internet where we tend to blast/status/tweet every thought that forms a ball in our subconscious…has become the norm. We don’t respect our intimate business and lives. We’ve become voyeuristic…loving the lives of others through scopes and cams and vids and pics and…well, you get it…we talk too damn much. I get that EVERYTHING isn’t for public consumption. Your relationship with your man/chick? Not my business! Your financial portfolio? Nope, don’t care. The baby daddy/mama drama, sexual preference/quantity of partners, addictions/vices…don’t have anything to do with me…
…yet, a question looms. What is our purpose on this earth spiritually? Are we meant to lead such individual lives that we feel compelled at all times to be self-contained? Are we not to be a threaded community of spirits, influencing each other…perpetuating growth and cohesiveness? Are we not our brothers’ keepers?
So, that brings me to the conclusion that “our business” is really GOD’S business. Your triumphs and fails are testimony to His will…I mean if you believe in God in the first place. I even believe that if you DON’T believe in God that you still could believe in positivity and affecting others through sharing parts of yourself for the ability to relate. Isn’t the point of being in relationships, whether spousal, familial or friend…to be vulnerable, build trust and be loyally supportive? To gain wisdom and understanding conducive to the evolution of our humankind?
It’s okay to be an open book…well as long as it’s a positive read. Just because people are open books doesn’t mean it’s a good thing. Some folks SHOULD keep some things to themselves. If your content is trashy, flashy and the furthest from classy…shut the book. LOL I’m sure that those are bestsellers…the ones that people flock to read and beg for more…but, that just makes you entertainment, nothing more. Your truest self is lost on an audience only consumed with your highs and lows aka drama. YET, if your content is positive and strikes to the core…even if only a few read it, those are a few more people on this earth affected in a good way. Inspiration at it’s finest.
Just thought I’d stop in and say hi 🙂
Today, I lost my friend. I lost someone who means a lot to me. More than a lot…something like a huge piece of me. Do I think I’ll ever get it back? I don’t know. All I know is that I reacted to my hurt in ways I am not proud of. I guess, when I realized that it was gone…my heart broke. Kind of like an explosion where shards of glass scattered to the winds. Some hit him…some hit the ground…others are still airborne and yet to fall to the ground. All I know, is the person who I awoke to every morning and went to sleep to every night…is gone.
Perhaps, this will fuel poetry. Maybe a song or two will spill from my heart only for the melody to fade afterwards. (that happens a lot) I may pour my hurt into my book and make it do what it do and be what I’ve been destined to be. What he believed I could be as well. I will make my dreams come true…step out of the shell (which he pried open and held long enough for me to step out of) and walk into the future.
If he reads this, I want to say…I’m sorry. Sorry that you feel your dreams cannot be made manifest with me riding shotgun. I’m sorry that you felt hurt ever…whether at my hands or anyone else’s. I’m sorry that I allowed the hurt I felt to change us. I’m sorry that you never felt you could be rawly emotional and open with me. I’m even sorry if in reading this you’re upset that I’m blogging on a personal level…but, hey. You brought me out of my shell, man. You created this monster. LOL
I also want him to know…that you were loved. Are loved. Are seen. Are worthy. Are beautiful. Are talented. Are special. That you’re always gonna be a part of me. Through my tears as I type, I still love you. And even when I’ve fully faded from your picture…I hope you will still keep pieces of me close. I wish you the best in life…never be afraid to reach out to me. God bless you, baby. I love you Papa Pea.