Sitting still...my coming out story (The unabridged version)

You think you know, but you have no idea. 

My life with Narcolepsy.

Part one In the beginning

For the last two years I've felt...exhausted. I was lethargic. I had vertigo episodes, and numbness in my hands and arms. I'd been in and out of doctor's offices. I'd been poked and prodded.  There have been blood tests and EKGs and blood tests. Oh and did I mention the BLOOD TESTS. Then I had my sleep test. The tests lasted almost 24 hours with the most uncomfortable wires all sticker-ed to my body. From 11pm to 6am I slept. Then starting at 8 am, every two hours I had to take a 20 minute nap. To the average person this might be slightly uncomfortable but to someone with a sleeping disorder it was excruciating. The overnight test was to check to see if I had sleep apnea. I slept like a baby....but longer. I was supposed to take 5 naps during the day. After the four nap tests the gentleman said I didn't need to complete my 5th test. I felt like, hey I rocked the first four tests I don't have to take the final.

The Results

The results are in! My neurologist sits me down and goes over the test results. No sleep apnea. YAY no sleep mask for me, bitches! But the other tests show I have Narcolepsy. Or as my professional Neurologist said, "you're a dead ringer". Out of my four naps I fell asleep with in a min-5 minutes. The average person will take 20 minutes to fall asleep. Bam! Aced that test. Next my doctor told me they were measuring my dreams. In case you don't know this, there are different stages of sleep. REM (Rapid eye movement) sleep is the third phase of sleeping and this is when you begin to dream. Again, it takes a normal person about 1 hour to 1.5 hours to start dreaming. I was dreaming within 5-10 minutes. So what does that mean? Tada Narcolepsy. 

• Narcolepsy is a sleep disorder that causes excessive sleepiness and frequent daytime sleep attacks. 
  
  Causes, incidence, and risk factors
  
  
  Narcolepsy is a nervous system disorder, not a mental illness. Anxiety does not cause narcolepsy.
  Experts believe that narcolepsy is caused by reduced amounts of a protein called hypocretin, which is made in the brain. What causes the brain to produce less of this protein is unclear.
  Narcolepsy tends to run in families.

  Symptoms

  The most common symptoms of narcolepsy are:
  

  • Periods of extreme drowsiness every 3 to 4 hours during the day. You may feel a strong urge to sleep, often followed by a short nap (sleep attack).
    
    • These periods last for about 15 minutes each, although they can be longer.
    • They often happen after eating, but may occur while driving, talking to someone, or during other situations.
    • You wake up feeling refreshed.
  • Dream-like hallucinations may occur during the stage between sleep and wakefulness. They involve seeing or hearing, and possibly other senses.
  • Sleep paralysis is when you are unable to move when you first wake up. It may also happen when you first become drowsy.
  • Cataplexy is a sudden loss of muscle tone while awake, resulting in the inability to move. Strong emotions, such as laughter or anger, will often bring on cataplexy.
    
    • Most attacks last for less than 30 seconds and can be missed.
    • Your head will suddenly fall forward, your jaw will become slack, and your knees will buckle.
    • In severe cases, a person may fall and stay paralyzed for as long as several minutes.

  Not all patients have all four symptoms.
   

FAQ

Do I have Narcolepsy?

Yes, but I don't have cataplexy.

Do you fall asleep standing up?

No, that's retarded. Do you fall asleep standing up? I start to get tired when I'm in comfortable relaxed states such as reading on the couch, facebook stalking in my bed, getting my nails done, riding on planes and pimped out cars. I feel sleepy and the best thing for me to do is nap. 15 minutes later I'm refreshed and ready to go. 

Is this a life threatening disease?

No. But like anything in life you need to be cautious of what you can and can not do. Drive 4 hours to South Florida is not in my cards but I'll make an excellent sleeping passenger.

 

Are there medications you can take?

Yes there are. I'm actually in the process of treatment. There are a lot of variables with these medications. They affect my nervous system. These medications are your everyday Tylenol. FYI Adderall was invented for people like me. Your welcome my druggy friends.

Can you still drive?

Yes, I'm allowed to drive but due to the risks involve during treatment I sold my car. I'll be getting a pimp scooter in August!

Won't a scooter be more dangerous?

Not as far as my Narc is concerned. A scooter will actually keep me more awake and alert than a comfy air conditioned car.

Can't you still server?

Yep. I would totally fall asleep in a desk job. The fact that I'm on my feet running around keeps me from dragging ass.

Conclusion

In conclusion I'm still me. And by that I mean awesome. I just have to do a few things a little differently. If we're out having a good time and I say I'm tired, you have no clue how I feel. If I leave suddenly it's not because I'm rude. If you have any other questions....google it. (I'm tired now) Nappy time. 

PS I have a note from my doctor that proscribes me naps. And what? And what? Don't hate.

Much love,

Samantha

Sunday March 13th

Dear you,

He came back today. I should be happy, right? He's safe with in the united states of America. He's just a plane ride away. Just a text, a phone call, an e-mail. Why aren't I more happy about this? He's worlds apart from me right now. I know he's safe and everyone keeps telling me how great that is. What's great about a safe living person who's no where near you? I feel like I'm in captivity. Sure I'm getting fed but what I'd really like to do is run and jump and be free. Look at my record, of course this is something I'd sign up for. Wonderful not physically available male. Why do I pick such people? Why is the long distance relationship so appealing to me? Why do I chose these closed off men. These enigmas. Oh you're damaged goods, step right into my office. You are emotionally unstable, here let me fix that for you. Oh you're no where close to me. Good thing I just want to see you when I want to see you and that's it.

My emotions are quite confused. They just want to embrace him but he's not ready. He's back to bury his friends and soldiers. What am I to do or say? I want responses to my questions but when is the right time to ask? I can't imagine what he's going through right now. Is he here just to bury his friends then off to watch more die? I feel selfish for wanting his attention right now but at the same time I want to hold my ground. I'm not an Army wife. I don't know what to expect. The whole "we know each other so well" bullshit isn't really panning out. I don't know this person who've you become. Why did I think you'd stay the same after 10 years. You grew up, got a job, and live that life. It's a very intense route that you have taken. How am I supposed to compete with the crazy world you have around you? I don't even know if you want me to compete.

What happened that night? I obviously was out of it, but you were fine. You had ties to other people yet you chose to lay next to me for a few hours in the wee morning talking about everything and nothing. Where you just pushing reality away? Was I just a distraction from your life? Looking back it seems silly. Everything I've done and said since then seems silly. And finding out that someone still thinks you're together should have given me the red flag on you, Maybe you're around guys too much that you don't know how to treat women.

I'm just a little disappointed in you. Actually I'm really disappointed in you. You were someone I trusted and counted on now you're starting to become a blur like the rest of them. Is that what you want? Is that even fair to ask right now? It's not. You're all shook up and need time to heal and I didn't realize that's what I signed up for.

Look at her. Do you see it? Her eyes are shut tight and she's letting go with every inch of her body. She knows without a doubt he won't drop her. I don't know what makes her so sure. Who knows what he's capable of doing or done. And her, what has she done to him? Nothing? Maybe but maybe not. No one knows and to watch her is like watching an ant. Where is it going and why?  The brain of someone in love is a little unpriortized. But the brain of a lover with more then one partner is always ploting. So is it that she closes her eyes because she wants to feel the moment without spoiling it with her sences? Or is it she doesn't want to show guilt when he looks at her in the eyes?

There is so much that an outsider sees. It doesn't mean anything. It's like watching a movie without sound. You may think you can read their emotions but the more you can understand, the more they seem to be tricking you.

The answers

Once upon a time I knew everything. I knew how the world work and what I was supposed to do. I knew where I was to go in life and what paths not to take. I'm pretty sure from the ages 15-17 I knew it all. I should have gone to college then. I probably would have my Doctorate by now. Who knows I could have cured cancer. But I let life happen as it naturally does. I've seen conflicts that I swore I knew the answer to. And years later regret the choice that I made. I've realized that no one can tell you what is going to make you happy in life. They can tell you what possibly can make you rich. They can tell you when you're most fertail. They can tell you how to study and become an expert in the area you want to learn. They can tell you how they found peace within themselves. Unfortunately as much as you'd like to think the answer is out there waiting for you to find it. It's not. You need to find it within yourself. I would say most people never find it. Most give up or try to  find happiness in doing what other find joy in. Sad. Take some time away from everything. What five things in your life right now make you happy? If it's too hard for you, I won't judge you. But I won't save you from judging yourself.

The Dance

(I wrote this a while back and never posted it. I cleaned it up a bit. Hope you like.)

I notice you. You've noticed me. We've begun our dance. This one has been slower then other dances I've danced. It's not our intention. The DJ is controlling the music and we can either get off the dance floor and wait till a faster song comes on or keep slow dancing. We keep slow dancing. Neither one of us wants to break from the others arms.  We don't get off the dance floor. There are too many distractions that could keep us from coming back when the tempo picks up. So we continue to slow dance. Why is it easier to let go of yourself  when the music is louder and fast? The slow speed allows us to look at each other feel the closeness between us. It allows us to really see the person in front of us. So why do we want to blur the image we see with noise and fast movements?

Its comforting that you can slow dance well. You already know how to hold me softly and lead me around the floor without force or confusion. Will this song ever end? We've been chit-chatting our way through it. I notice how amazing your eyes are and how they stare into mine when I'm rambling on about something. You're smiling but I don't know why. Is there something in my teeth? Please could they have made a longer version of this song? Why do I always want to dance fast? In the beginning it's all about speed and excitement. Keep going faster so you can't see the dullness in each other. I look away. You look away. It's almost painful to be so close and going so slow. I feel embarrassed as if I was looking at something forbidden. I guess I am. I'm looking right at your soul.

It's hard to just sit still...

So I've noticed it's hard for people to sit still. Case in point. Everyone just needs to lend a helping hand, don't they? Someone always has the right way to "do it". They have the answer that's going to "fix it." Here let me tell you how to do it. I love hearing the, "well have you thought about such and such situation?" Oh no I haven't because I'm a moron and you raised me to be stupid. Oh I love this one, "you really need to do this because that's what I did." Oh yeah? Last time I checked I though your life sucked and you never met your true potential.

When someone asks me a question and I give an answer it's hardly ever followed with, "oh was that what you would do?" No. I live my life, mistakes and all, the way I think I should live it. Lots of good things came from mistakes. Velcro, America, ice cream cones, silly puddy, Samantha Law, just to name a few things that would make our lives a little harder to live without.

I'm not saying I never ask for advice. I know my life is not perfect in most people's eyes but to me I wouldn't trade it for your minivan and soccer practice. I hear 30 is the new 20. So I guess I'm 18. Does that mean I'm just starting womanhood? No that's ridiculous. I've done more, loved more, moved more then most women twice my age. I can't be starting womanhood. I also know I'm not ready for motherhood (by choice not by insecurity) I know I'm still trying to figure out what I'm going to do when I grow up. But maybe I'm supposed to have many short periods (years) of working with companies verses decades. But right now everything feels perfect. (My therapist says not to use that word) I should say everything feels right in it's place. Now if I could just get a day off with clear skies to go to the beach I'd be Kosher!

Let's just say for the most part I know what I want and what I don't want. But I still don't understand how people who don't have what I do want are telling me how I'm going to get it. If I want to be a billionaire should I be talking to someone who's making 40K a year? If I want to raise a good kid should I be talking to someone who just has toddlers? No that's ridiculous.  Now that doesn't mean they won't end up being billionaires or great parents. I'm just saying, let's get some expert opinions. Not yours. Just kidding, you probably don't tell me how to live my life or how to fold my towels. I would assume those closest to your are the ones telling you how to live yours. I surely can't be the only on who's getting told what to do? Just me and five year olds huh? Guess I need to find a good Chuck E Cheese to hang out at. Good bye Casey's on Central, Hello Chuck E Cheese in Waterford Lakes.

Without you

There are going to be pictures without you. There are never pictures without you. There are pictures without me but there are never pictures without you. They wanted you so badly. She tried over and over to get you. I prayed for you as if I was asking God for a pony. And him, he changed. You changed him. He's never been the same since you got here. You broke down walls that had been build up around him. You didn't even know what you were doing. You were the first. You were in all the pictures. I didn't even know someone could be in so many pictures until you got here. You were tiny. I kissed you with my eyes closed. We were so close that my eyelashes almost touched your cheek. You were different, so much smarter then all the other ones. You didn't even talk you just pointed and everyone knew what you wanted. You were so quite for so long. You were like a new toy for us. You were passed around like bread at Thanksgiving. Everyone admiring your beauty. Your long dark hair. Your deep brown eyes. Your smile. Yes you smiled at everything. You smiled in pictures. Then there were two. And from then on you were never in a photo alone. She was always there. It's like you were a twin pack despite the two year age difference. You were inseparable. Despite the fact that you both had your own rooms you lovingly slept side by side. I have pictures. And now my mind races through memories. It's searching for something that I missed. How did it get this far? How did it get this bad? We are going to be together, but we are going to be without you. You always wonder what would be worse, to have something that is damaged or to not have it at all. I guess that would be a spin on "is it better to love and have lost or to have never loved at all". But I wasn't given that decision to make. You did. Now there are going to be pictures without you.