The Twenty Third Day…

…the day you turned 21

Wow. I wrote this question and still wasn’t prepared to answer it. (I’ll do better next time guys…OR y’all can ask some questions yourself, lol)

I turned 21 in 1994.

Everything seemed topsy turvy at the time. I’d lost my job less than a month before behind my sleepiness on the job. I was in a relationship with someone 22 years my senior and that was causing havoc in my family relationships. The only good thing about this day was the fact that my then-boo cared enough to be the only one to give me a gift.

He and I had gone downtown to Manhattan. He’d taken me to my consultation at Bellevue Hospital where I was to have my sleep study to determine whether or not I had Narcolepsy (which obviously I do, lol). There was this little book store on 27th (I think) and we’d gone there a couple of times. I saw this book with my name on it and was intrigued. My name had been the source of many jokes and I never liked it. The only people who seemed to appreciate my name were White people. No lie…everywhere I go that my name is mentioned, I’m told how beautiful my name is. My OWN folks? I was Kali from the Valley, Kal-trate, Kal-Kan, Kaliflower and of course Kalifornia. It was annoying as hell to have folks teasing me on a daily basis in some way. It’s one of the reasons I respect names so much. Learning that words…and therefore names are the verbal manifestation of a spiritual vibration…was all I needed to know to get that much closer to loving the name my mom was SO proud to have named me.

Kali: Child closest to God, Egyptian…

So, when my birthday came…I felt like it was gonna be bummer. All of the stress in my house over this man and my now unemployed status, was giving me the blues. Until Ali showed up. He presented the book to me with an inscription that said, “To My Goddess”.

To say I cheesed and got chinky from high cheeks forced upward by my smile…is an understatement.

There was so much in motion in that moment. I had for the first time found someone (who’d found me) who saw me as a prize. He was the only one to give me a gift…and quite possibly my only friend at the time. Twas a very special night.

My 21st year would be a helluva an entry into official adulthood. By the time 22 rolled around…I was tide. lol

The Eighteenth Day…

…the last day of your first adult job

Hmmm…Would I have been an adult at 18? lol okay okay…I’m stalling.

I was 18 and I worked at the United States Postal Service. My mom got me the job (she’d worked there since the day I was born) so this meant I had to be on my best model daughter behavior. I could do no wrong…or at least not get CAUGHT doing no wrong.

Well, that is HARD when you’re a Narcoleptic, but don’t KNOW you’re a Narcoleptic so you just look…*wait for it*…LAZY! So…that meant I was walking on eggshells trying not to go to sleep. Trying not to fall asleep while running the OCR machine, or while sorting mail, or while pushing the “post cons” (which look like rolling jails for mail) LOL

I had fun sometimes…I knew a few of the workers around my age. My friend Catina (who shares a birthday with me), my friend Shaunta, Mia and a frenemy, Debbie. I had a crush on the older brother of someone I went to school with but that died shortly thereafter because he was an asshole who thought he could tell me how if I “sculpted my body a little more I could have a BAD ASS shape”. Man fuck you and the thoughts you’re thinking…

Anyway…

The last day of this job was following a fight I almost had a week before with an OLD ASS WOMAN!! This woman used to bother me all of the time. I have NO clue why. I always respected my elders and often deferred to them with a passive, “Yes ma’am” or “Excuse me, Ma’am”. WHY this crazy ass old hen felt the need to bother me was beyond me. She actually confronted me in the bathroom because she’d heard me say under my breath something about how she needed to back up off me. (I had only the intentions of going home and speaking to my mother about it and having her handle it for me, since this was a TEMP job and she’d been there for 18yrs) I’d had E-FUCKING-NOUGH of Rogue Gangster Granny acting like I stole her Ben-Gay. So, she followed me and said, “What you say, bitch?” I was like O_O …the fuck? is WRONG? with THIS OLD BISH???

Well, this chick was COCK-A-DOODLE DOO crazy. She pulled out a KNIFE on me. My friend Catina was like, “OMG…she’s gonna KILL YOU!” LOL I told her not to worry about it. She tried to jab at me and I dodged her. (I was pretty fast since childhood) She tried to jab me again and I caught her hand and pushed her with my weight. I ran the HEYELL up outta that bathroom and to the supervisor’s office. I reported her and within the week…I had been terminated.

Nope…it wasn’t because of the old lady debacle. It ended up being about the fact that I was late more than a few times (I worked from 11pm to 7am and it was hard to get up and out of the house) AND I’d been caught napping more than few times around the P.O. (damn looking ass negroes) LOL

I lost that job in Early November of 1991 and by 1992 I would begin work at NYNEX (now Verizon) for almost two years. I’d get terminated from that job for the same reasons…

I got diagnosed a month after leaving that job in 1994 and found myself being able to FINALLY put a name to what was “wrong” with me. Severe Narcolepsy.

The Wild Card

This is my wild card blog.


I had a full weekend. I didn’t get to blog on Friday, so this can make up for it…I hope. lol Since this is the “wild card” blog…I decided to do a medley of what’s on my mind.

Why do I feel like there isn’t enough hours in the day…and too many days in the week?


When I’m at work, the day ticks by slowly…and I feel like I’m never gonna get out of the job. If you all didn’t read before…I’m Narcoleptic. So my 4hrs feel like an entire day. I often fall asleep in the middle of tasks. How about, one day I was alphabetizing a shit load of papers. I had another young lady assisting me. When I doze and it feels like I’ve been asleep for a long time, it sometimes has been mere minutes…and in some cases…seconds. I would wake up and look at her and she’d be oblivious. *lmao*


So…we’re doing the alphabetizing when I drift off (I’m already laughing). I wake up and instinctively ball up a form and toss it in the garbage next to me. It hits me…wait. Why did I do that? I reach back into the trash, pull out the yellow ball, straighten it out and see that it’s an important paper. I look at the young lady again and she’s REALLY oblivious. She hasn’t said a word. I say to her, “Dee, did you notice I nodded off?”. She says, “No…I didn’t. I thought you were concentrating.” I laugh so loudly. I tell her, “GIRL…PAY ATTENTION to me. I can be awake one moment and asleep the next. I almost discarded an important document.” She laughs with me and promises to pay attention.


All of a sudden, inside…I want to cry.


It’s moments like these that are SO hard for me. I can make fun of myself, because I’m silly as hell..and I’m not afraid to see the obvious humor. The pain and frustration of it isn’t so damn obvious…and sometimes the emotions hit me. Daily life isn’t “normal” for me. I look “normal”. I speak “normally”. I don’t have a physical or visible disability…but the disorder I do have is real. It’s frustrating and stressful to be in public places, at the dinner for my friend on Friday…at the luncheon with my grandmother and her church members. I’m afraid that I’ll embarrass myself…or someone else, by falling asleep at the table. I KNOW I did it a couple of times at the luncheon…and my first concern was that one of my grandmother’s friends would see me and mention it later (to my grandmother’s chagrin). My grandmother KNOWS about my disorder, but she also has a hard time wrapping her mind around the sleepiness being less “lazy” and more “uncontrollable”.


I guess, I have to keep doing the best I can to live as “normally” as possible. I don’t turn down opportunities to socialize, I just plan around when I’m most susceptible to nod. I can sometimes tell how tired I’ll be by what I’ve done all day. The more occupied my mind is, the easier it is for me to stay alert. It’s why I multi-task. I am constantly “doing”. I’m usually, writing, reading, listening to music, watching TV and quite possibly on the phone…all at the same time. ~phew~ The more sedentary I am…the quicker I’ll nod. When going out, I also roll with people I can trust.


Here’s some tips on how not to piss off this Narcoleptic:


~Do NOT yell, “Wake up, Kali” and then laugh. Yea, I might cuss you out. For one, it startles me, which makes my nerves frazzled and then gives me a headache.


~Do NOT scold me for falling asleep. If we’re in motion (walking) just nudge me and remember to not treat me like I’m crazy. LOL (unless you’re close enough to me to know it’s okay)


~Do NOT act embarrassed. I won’t hang with you. If I think for one moment, that my condition will bring out your self-consciousness around me…I will make myself scarce.


~Be sensitive. I can be harder on me than anyone. I don’t need critics. I need friends. Just like I’d have your back…have mine.


S/N: I was just thinking how when Joy and I were on the train going back to the BX from Manhattan, we were in the subway on the platform and even though she didn’t know it, I was watching her back. I’d purposely turn my back to her when she had her back to me. I figured…if we’re BOTH looking in one direction, we’re easier marks than if we’re looking both ways. Did you notice that Joy? LOL


Anyway…this is my wild card blog. A short peek into my daily life and struggle. I literally can no longer concentrate, as the “rabbits” (my screwing neighbors upstairs) are in full fuck mode. haha.


Peace.

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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