I’ve gone through periods of being a truly epic sleeper, but lately I’ve been having trouble getting a good night’s sleep.  Insomnia is a funny thing.  I have trouble getting myself to want to go to bed in the first place.  Then I wake every few hours once I do go to sleep.  All in all I’m only getting four to five hours a night most nights.  It’s gotten to be rather frustrating not to mention exhausting.  And it’s not good for my various chronic illnesses to get so little sleep.

Part of it is stress, my OCD and anxiety, fear of nightmares, and  some of my medications which are know to cause insomnia as a side effect (I’m looking at you Prednisone).  But part of it is also that I think I’m afraid of missing out on stuff I could or feel I should be doing.  As a result I have a hard time even wanting to try to initiate sleep.  I don’t know what to do about it.  None of the usual insomnia tricks work when you are avoiding sleep in the first place.

I’m frustrated with myself I guess.  I know I’m only sabotaging myself, but I can’t figure out how to stop.  Sigh.

Thinking of all this reminds me of a poem I once wrote one night several years ago when I just couldn’t sleep.  I’ll leave you with it and try to get some shut eye myself.

Night Game
By Lauren Soffer

When my thoughts go onto paper
And they can finally leave my head
With my worries just a vapor
I can finally go to bed

Tucked snugly amongst the covers
My eyes welcome in the dark
Yet consciousness still hovers
And Sleep canʼt make her mark

So Sleep and Thought begin
As the night slips into day
A game that Sleep will win
For she must have her way

With a loverʼs sweet caresses
Sleep slowly works her charm
Untying all Thoughtʼs messes
So he can do himself no harm

With Sleep holding on so tightly
To Thought closely at her side
The peace that I crave nightly
Is finally serving as my guide

Single Awareness Day (also known as Valentine’s Day) is upon us!  Relationships (or the lack there of) are on the mind.  Relationships are hard.  Romantic relationships are harder.  Even for healthy people.  Having a chronic illness makes it that much more complicated.  It’s hard not to feel undesirable… broken.  I know the “right guy” will love me anyway.  I know the “right guy” won’t care that I’m 150 pounds overweight from being on Prednisone.  I know the “right guy” won’t mind carting my wheelchair or walker around on dates.  I know the “right guy” will love me for the walking pharmacy, allergy ridden, health disaster that I am.  And I have faith that the “right guy” is out there somewhere.  But until then I’ve written this song in honor of today…

Other Girls
by Lauren Soffer

Maybe now I’m just jaded
Maybe my hope has just faded
So I just swallow my pride
Always a bridesmaid never a bride
Never get roses never get pearls
Love songs are for other girls

No one to hold my hand
No matching footprints in the sand
No dinners in candlelight
No little love notes to write
Never get roses never get pearls
Love songs are for other girls

No chocolate candy hearts
No Romeo to play the part
No one to give me a good night kiss
No one to love and cherish hold and miss
Never get roses never get pearls
Love songs are for other girls

But don’t you get me wrong
Trade anything to sing a different song

Maybe now I’m just jaded
Maybe my hope has just faded
So I just swallow my pride
Always a bridesmaid never a bride
Never get roses never get pearls
Love songs are for other girls

Never get roses never get pearls
Love songs are for other girls

There are many things that define me a Novel Patient, mainly my collection of unusual illnesses, symptoms and side effects.  But one of them has nothing to do with being sick.  If you recall last November, I started writing a novel.  It’s working title is The Alone Elevator.  It’s a coming of age story set in a dystopian future about the pains and trials of going up and the importance of the freedom to think for yourself.  Here’s a brief summary:

Chosen to attend the prestigious Riddlebane Academy, Kylie Lockmore soon learns secrets that turn her world upside-down.  From the drug her grandmother invented to control the populace to the missing sister she never knew she had, Kylie is forced to question the truth and decide where she stands.

As I’ve been writing this novel I’ve been thinking lately about how I define myself.  So much of my life revolves around and is affected by my illness that it can sometimes feel that that is all I am.  But that is not how I want to be defined.  I am more than a sum of doctors appointments and hospital stays, symptoms and side effects, walkers and wheelchairs.  There are so many other things that define me.  And it occurs to me how important it is that I remember that.  I am a creative thinking feeling being.  I am a graphic and web designer, a scrapbooker, a novelist.  I am a daughter, a sister, a friend, a child of God.  I am so much more than just a “Novel Patient”.

But how do others see me?  Do they see just a “sick girl” with a walker?  Or do they see the real me?  I think that the more I define myself as I want to be defined the more people will see the me I want them to see.  If I focus on being a patient that is what will define me.  But if I focus on being a Novel PERSON…  well that is what I will be and radiate to the world.

Here is an excerpt from the first draft of my novel:

The Alone Elevator Chapter 1 Excerpt

Things have been emotionally rough and raw lately.  Lot’s of things are in transition.  Relationships in flux.  And I’m still stuck in the hospital (33 consecutive days and 39 total days in the hospital by my count).  I’m trying to think of it as being 39 days closer to being released from the hospital.  It doesn’t work that well though.  But cheery flowers like these ones I got from my Great Aunt and Cousins brightened my room and my mood.

Tests a trickling in and no definitive diagnosis concerning the cause of my brain stem inflammation is yet emerging.

So I was especially pleasantly surprised to receive this cuddly visitor today.  It was just what the doctor ordered.

In the midst of confusion, I often turn to poetry to help capture my thoughts.  I wrote this one in about ten minutes, and I rather like it.  An emotional moment forever frozen like a bug trapped in amber.

A Place For Him

by Lauren Soffer

Life can be wild
Wonder is lost on this child
So she goes it alone
As she makes her way home

But the time she tripped
And she didn’t fall
A silent scream
Yet He heard the call
Still She goes it alone
As she makes her way home

Not ready
Not ready to let go
Not ready
For a hand to hold
Cause even crying all alone
At least she knows
It’s all she knows

Life can be wild
Wonder is lost on this child
This girl must
Grow up
Not a child anymore
Stand up
Reach out a hand
Lift up
Her heart till it holds
Always
A place for Him

EDIT: Last night my friends Spencer, Kristi, and I had a blast in my hospital room writing music to my lyrics.  Here’s a REALLY rough take of it – complete with my voice still completely hoarse from an allergic reaction and nasal from having a feeding tube up my nose.  Hehe.  So forgive my lack of ability to hit any of the notes right now, but I at least wanted to give you the idea.