From “Living With Narcolepsy“
These guys are a non profit and already have a .org website! Their mission statement is almost identical to what I had visioned and my name is word for word the same as theirs (almost, I just have more words). Well, if I’m done, I’m on to the next project! I may be done but I’m not defeated.
You won’t know unless you try. I tried this and I may be too late, but I have no regrets!
Who knows? Maybe we can collaborate with each other for our common cause, so I haven’t given up.
I’m just bummed out a little, I thought I had researched that name enough. I thought I was original!
So there’s Wake Up Narcolepsy(WUN) and then there’s WakeUp – A Narcolepsy Awareness Foundation…..
That’s about as awkward as any Jerry Springer or Maury episode featuring “guess their gender.” Or finding out your girlfriend is a relative. Or an argument about what goes on first; The peanut butter or the jelly?
I can’t be in trouble, right? The IRS gave me an EIN. They can’t do that if the name I picked wasn’t available, right? If I do find myself in trouble, I’ll just say I was asleep when I did it!
It’s ok. I can say that, I have narcolepsy. It’s also ok to laugh now! I’m asleep while write my blogs!
Another Awkward Moment.
I just pointed out one of the secret perks to being narcoleptic. No one can tell you that you WEREN’T asleep! It’s like having Alzheimer’s, you can say you don’t remember and no one will challenge it!
Narcolepsy and Alzheimer’s are closely linked by the way…
“This Is Not My Ball”
So I walk into work one day, which I don’t do much of anymore, and I was asked by some friends “Is this your basketball?” Now, if you don’t take anything from your experience in the Marine Corps., you definitely get to hear the wildest stories and myths. This story will explain why I was asked “Is this your basketball?”
People do strange things to get themselves kicked out, this particular story is about such a person. There was a Marine who, supposedly started having weird tendencies, like bouncing a fake basketball. He bounced his ball everywhere, he would set it on his desk , and he would even come back for it if he forgot it.
Obviously, he can’t be in the military anymore, so they began to medically separate him. There he was, in front of his sergeant major, bouncing his ball and the sergeant major hands him his separation papers. At this point, all he has to do is sign the paper and he’s out of the Corps. He sets his ball down on the sergeant majors desk, signs the paper and turns around to walk out. The sergeant major says “hey, you forgot your ball on my desk.” He stops and looks back, paper in hand, and calmly says “I don’t need it anymore.”
So, when I was asked “is this your basketball,” you can see why this was funny to them and offensive to me. I knew that it was just a joke and they weren’t at all serious, or were they? They insisted that I could tell them and they wouldn’t say anything, they asked for my ‘secret,’ and even asked if I could pass them the ball when I was done with it.
I simply responded with the fact that I couldn’t fake the test results, which are done through computers, electrodes and video footage. Also, who in the hell would want to fake narcolepsy? I really don’t think it’s even possible, but I’m not. I would do anything to be rid of narcolepsy well, almost anything. So sorry guys, I am not faking and this is not my ball.
“The first time I had been called the ‘N’ word!”
There I was, sitting next to my wife in a ‘sleep clinic’ and we were eagerly awaiting the results of my sleep tests. Then, the doctor just said it “We think you have narcolepsy.” I was confused, I looked at my doctor as if I were trying to read his mind, trying to see if this was a poorly executed joke. But it wasn’t, and he could tell that I was in a state of disbelief. He knew that I had the same misconceptions as most people who have only seen narcolepsy portrayed in movies, you’re probably picturing those same portrayals as you read.
Now, in order for me to continue my story I have to go back to when it all started, or at least when it was first noticed. It was December of 2010 and I was confronted by an angry, concerned wife. “What is wrong, what is going on with you?” I had no idea how to answer that question. I didn’t know anything was wrong, so how could I possibly answer? She begins telling me about some of the things I had been doing at night that horrified me and brought her to tears. She noticed how it caught me off guard and we decided then and there that I would see the doctor the next day. I was so ashamed, I was afraid of myself, afraid that I was going to get worse if I didn’t talk.
I went to sick call the next day and just told the doctor every detail that I could recall; I was violent with my wife and my pets in my sleep, I had fallen asleep behind the wheel numerous times (but who isn’t tired at zero dark thirty?) and other issues. That’s when I was sent to a sleep clinic, I found myself covered in electrodes and sleeping in a room with cameras, not at all my idea of fun. Test one, they saw nothing, test two they said I fall asleep fast. Test three, they have me stay for an MSLT, and they tell me I MAY have narcolepsy, but I didn’t meet all requirements! Hypersomnia, that’s what they said it was at first, they prescribed meds for narcolepsy, but I still slept too much, I was still tired. They increased it and increased it, and nothing.
Then I see a neurologist, I thought the sleep clinic was the authority on sleep but they wanted me to see a neurologist. Another sleep test and MSLT, and my results were different, I have narcolepsy! My idea of narcolepsy was Rowan Atkinson in the movie ‘Rat Race’; obviously and uncontrollably falling asleep at any given moment, no matter the circumstances. I was told that this example would be extremely rare, and it is different from person to person.
All of my questions were answered by this one word diagnosis; I was sleeping but my body received no benefits from it, so I was in a constant sleep debt. My memory problems stemmed from the lack of sleep I thought I was getting, anger issues, etc. The closer we looked at every detail, the more signs we realized were missed. I was suffering from the ‘N’ word.
“Narcoleptic Insomniac: The Worst Combo Ever!”
THIS IS PAINFUL
Here I am, it’s 2 a.m and I’m still awake. Not only am I awake, I’m blogging as well.
**RANDOM THOUGHTS TIME!**
Usually, I’m doing my medically induced email rants to Chris Brogan about his latest podcast. Which reminds me….
I just realized I had not yet subscribed to entrepreneur on fire, sorry about that John Lee Dumas
I feel the presence of Jesus when I pray in a certain part of the house. Through him, God has given me a new path. That path is the reason, I feel, I’ve been connecting with so many people in social media.
I’ve only recently become religious, two or three months. Around that same time I was freed of my depression, became a happier person, started yoga, and connected with some awesome people, (almost as if by magic, I can’t recall how it all began!)
I feel that my Father has given me a mission to use my voice to change the world. On many fronts, not just the world of PWN’s! Label me if you want, but Jesus talks to everyone, you just have to listen!
**END RANDOM THOUGHTS TIME**
•So I have to email +Chris Brogan about the Atari guy and Steve Jobs.
•I have to get started on writing my book.
•I have A LOT of books to read.
•But first, I must go to sleep!
THANKS FOR READING!
“Funny Now, Not So Funny Then”
Have you ever noticed that some of the most embarrassing moments in life, tend to be the funniest? In a twisted kind of way, those of us with narcolepsy are potential comedians. There are moments in my life that bring shame, embarrassment, and humiliation all at once. When I share my experiences with my friends, it becomes the funniest story…since the last one at least.
For example, I regularly walked around the house naked. My wife and just finished our favorite extra-curricular activity, she walked into the bathroom as I stood in the doorway making some dumb joke. Then, IT happened. I was laughing so hard at my stupid joke I pooped on the floor! I thought it to be a simple fart, so why not squeeze it out? Bad idea obviously. All laughing ceased. I just stood there, looking at my wife not knowing what to say that could explain what just happened. So embarrassing, but you’re probably laughing your ass off right now. You’re welcome.
Are you still reading? If so, I have another one for you that’s not so gross. I was getting ready to take a shower. Personally, I can’t stand it when the floor of the shower is cold, maybe that’s just me. I step in and the damn floor is cold so I start moving the hot water around with my right foot. The floor is getting warmer, success! Then IT happened, again. Somehow my left foot decided to join the party and I found myself airborne. I flew through two shower curtains and hit the floor. Thankfully, that’s the only thing that happened, I missed all of the things thought could have seriously hurt me.
That’s enough for funny story time today. But there are more, even funnier stories to come. I hope you now have a funny mental image of both scenarios because Today’s stories are funny now, but they weren’t funny then. Again, you’re welcome 🙂