A Narcolepsy Poem

For Those of You Who Do Not Know
(A Poem about my Narcolepsy, to raise awareness) ❤

Those deep and dreamless sleeps are few and far between,
But I can pick and choose the path inside my lucid dream

A daytime nap included is not to pass the time,
But a necessary nuisance to get through and to shine

The silent night time wonder or the witching hour scream,
A sudden midnight craving is another common scene

Night and day are intertwined so seem to be the same,
Memories either stay or go, I may not recall your name

With excitement comes the jelly legs or lying on the floor,
But this is not me sleeping, I’m still as aware as I was before

For those of you who do not know, I ask you to please not make,
Your usual clouded judgements, not just for my own sake

You never know what lies beneath in others or yourself one day,
Do not take your health for granted, for it may well be taken away

Rachel Rothwell

Adapting – What are you giving your time to?


Written by and posted with permission of Dawn Super.
Just got up
Brushed my teeth,
Got some coffee,
Went outside.

I prefer the outdoors
Look up at the sky
Count my blessings
Have a good cry.

The tears help
With the pain
Somehow slightly
Washing like rain.

I have an hour to me
Before the kids rise
Stretch out my body
Rub the sleep from my eyes.

Spend some time with friends
Virtual though they may be
Facebook keeps me connected
To those I love but cannot see.

I only have a few hours
In a day, you see.
Only so many awake
Even fewer, pain free.

My laundry list of ailments
Is usually a surprise
“But you look so healthy”
Is on their lips or in their eyes.

I’ll take your empathy
Living with narcolepsy
And pain every day is
Anything but easy.

“But you always seem so happy”
Comes incredulously, verbally
“Can you be?”
Thought silently.

I didn’t think I could be
For 41 years
Happiness eluded me

When it finally came my way
I remember clearly the day
The moment, even,
It took my breath away

It took my sadness
My mental tightness
It took the anger
I felt the lightness.

My tears used to burn
Hot tracks down my face
Drowning me in misery
Stealing my grace

I discovered myself again
Through the eyes of beautiful friends
Through music and laughter
And gratitude that never ends

I made friends with my pain
Calmed the quiet riot
Through yoga and meditation
For years I’d been scared to try it

Now here I stand
Well, sit actually 😉
It’s still too early
For my creaky body

I have about five hours
Before my first nap is imminent
Sometimes less, rarely more
Depends on what I do in it

Some things eat my time
Ridiculously quick
Pain, drama, bad news
People being a … jerk 😉

One thing keeps me going
No matter how briefly
And that, my friend,
Is my eternal happy

When all around me chaos reigns
Happy sets the shackles free
Laughter, music, friendship, love
All help me find my way back to me

If you’re only awake
Twelve hours a day
Why on earth
Give any away?

When you only have
Ten hours for you
Why let misery
Have a few?

Down to eight measly hours.
All day. There’s barely time to pee
Much less drink 8 glasses of water
To stay “healthy”

So what do you give up
When you have so little time?
Instead think, what makes the cut?
Choose only the sublime.

In my 8-12 hours a day
I still have to do things that get in the way
I work, kids to feed, bills to pay
Chores, meals, pets all before I can play

I rush like a ferret
Doing all I can do
Who has time
For negative doo doo?

Happy matters
Is my philosophy
Not just a kitschy phrase
It’s a necessity.

I fill my life with love
My man, my kids, my dogs, my friends
When you’re always grateful
The list of things to love never ends

You may have a few more
Hours a day than me
Count them up
And you’ll see

What are you doing with yours?
I ask you now politely.
How many hours a day
Do you give away to misery?

Read more of her blogs on: http://goingbeyondcoping.com

Narcolepsy, dating and relations – By Grant Beach

Narcolepsy, dating and relations – By Grant Beach.

So, I rarely ever post on internet due to how “busy” (lazy?) I am, but as I sit here on my porch, basking in the Atlanta sun, smoking my cigarette and drinking a beer (chocolate milk, I’m sorry I lied) I felt inspiration engulf and wash over me.
So, I’m going to carve off a little slice of the internet and put my thoughts to font for a second.

I met my beautiful girlfriend Jackie well over a year ago. We met on Tinder of all places. I know, I know. Tinder is what happens when you feed eharmony a Bud-Lite Lime-a-Rita after midnight. Neither of us were looking for anything more than going heel’s to Jesus with a hot person. However, when I met her, something inside me began to hum. Over time that hum turned into a symphonic scream that I couldn’t turn off. I didn’t want to. I was fucking hooked. And what made it even more exceptionally bad-ass, so was she.

Admittedly, I had just came out of yet another 6 month stint in county and was only able to muster just enough energy to fully commit to my substance abuse. I was like Noah in the Notebook, if Noah grew up in a Methadone clinic. I was far from a prize. I was a tin foil ring at the bottom of a Cracker Jack box, but I had potential. Yeah, I had potential. Throughout it all she saw something in me. An illumination of the soul I guess. Not so much a glimmer, but a super nova of sorts that I shut out completely. The turning point was when she sat me down, batted those beautiful lashes and expertly convinced me to get a sleep study done.

I knew something was wrong internally since I was a kid, but like most Irish males I just chose to live with something being wrong until I was a corpse. So, reluctantly I went. She was a saint through it. While I was hooked up to a plethora of electrodes and wires, looking like a science experiment, like the fucking Lawnmower Man, she stayed by me. She stayed by me through everything. Through my CONSTANT nightly battles with sleep paralysis, where I would leap out of bed confused and disoriented, not even knowing where I was; she stayed when I would basically fall asleep mid conversation repeatedly; she even stayed when I would become vehemently agitated at my obsessively persistent grogginess and was not entirely lovable in the moment. She stayed with me. She never missed an opportunity to plant kisses on my forehead and run delicate fingers across my back.

This isn’t a story about how I lost someone who was always there for me. This isn’t a musing about how you never know what you have until it is gone. Fuck that. I’ve been the main protagonist in plenty of those stories for way too long. What I did was change. Not who I was as an individual, but my non working patterns that kept me from shining. I have been sober over a year. I have a job. I have good, supportive friends, I have stayed out of trouble and kept my nose clean all the while showing her how much I love, like, appreciate and respect her verbally, physically and emotionally every god damn day in my life. I am receiving my first batch of Xyrem soon. Another notch in the ol’ belt of taking charge of my life. We have a beautiful apartment filled with laughter, tears, sex and random nerf gun battles and I couldn’t be more copacetic.

If I had one piece of advice it would be to never take ANYONE for granted. That love is not guaranteed to be there when you wake up. You have to work for that shit. Water it every day and keep swimming.

PS – If you swipe Up, Up, Down, Down, Left, Right, Left, Right, B, A on Tinder you unlock your soulmate.