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Scheherazade in Blue Jeans
freelance alchemist
Wind Tunnel Dreams: Fairy tales for Family 
18th-Sep-2009 01:05 pm
In honor of Invisible Illness Week. Not an adaptation of an existing fairy tale, but an effort to view aspects of my life through the lens of fairy tales. Wrote this a while ago.

I walked for seven years,
wearing out seven pairs of iron shoes,
all for you.
I surrendered my voice, my body,
cleaving in two -
every step like knives shooting through these legs.
All for you.
I wish, I wish -
I wish there was a reason.
I wish this was all for something -
to rescue a sister, a lover.
To set something right.
I want this to mean something.
I want it to have been for something.

The cruelty of this is in variation.
There are days I feel almost well,
weeks where I think that perhaps the curse has petered out,
cycled away like a lunar eclipse,
the disc of pain moving out of my orbit.
It would be easier to bear were it constant.
It would be easier to bear if I always needed a cane.
I could be prepared.
But this -
this is where despair lives.
In the feeling that one has backslid.
Has failed to be well.
That one was almost there, almost -
but, like Orpheus, you turned your head,
and health fell away.

You cannot know it.
I cannot make you know it.
Not just the pain -
pain like every muscle contracted and pulled
deep muscle ache
flash of pain like knives
radiant aura of pain around hips
tangling its fist in my back.
People are not equipped to understand this pain
without living it.
And I do not wish it on you.

Not just pain.
Bone-deep fatigue,
and the slow unpredictable malfunctions
of heart and gut and every part,
everything you thought you could depend on,

lights shutting out one by one,
or flickering feebly.
I wish it were a fairy tale.
Were it a fairy tale, there would be a magic word,
a secret task -
some way to break the spell.

It tears you apart,
its hooks rending you.
It pulls the joy from you,
dragging it out,
catching it on hope and fear,
a tangled mess.

Me, I streak my hair all the colors of fire.
I paint my eyes with glitter and hang seashells from my ears.
I wear skirts that make my walk
(when I can walk)
a dance,
striped socks,
shoes with flower-wreathed skulls.
I form a net to keep the joy in.
I catch it on my wild curls and woven silver and the swirl of my skirt.
And my eyes, my shoes, my dance - it makes you smile.
It gives you some small measure of happiness.
I catch it, the reflection of your joy, like the light of the Moon.
Perhaps I can make a spell of my own
And sing my restoration.

We are at $125 and need $300. Bring my sisterlove (and fellow Chronic Pain Lass) home for Thanksgiving! Remember, one luck sponsor will win a kythryne pendant!

18th-Sep-2009 05:14 pm (UTC)
Gods, this made my throat choke up.

Do you mind if I link to this? (I know you probably won't, but I feel it's polite to ask anyway. :))
18th-Sep-2009 05:15 pm (UTC)
Feel free!
18th-Sep-2009 05:24 pm (UTC)
I totally grok this. But you knew that already.
18th-Sep-2009 05:50 pm (UTC)
That, 'song, is stunning. That last paragraph...wow. (I also linked it - if you see visitors from Tumblr, that's why.)

Edited at 2009-09-18 05:54 pm (UTC)
18th-Sep-2009 06:20 pm (UTC)
This made me break down sobbing.
I love this.
I donated. I have a bit of money right now, and...
But mostly I sobbed.
Thank you.

(I also took a Soma a bit ago, and it makes me very emotional regarding the fibromyalgia and cerebral palsy.)
18th-Sep-2009 07:04 pm (UTC)
Hi there - I came by your post via egyptian_spider, who linked to your entry in her LJ.

Your poem is so beautiful. I also have a chronic illness - fibromyalgia. I'm not sure what illness(es) you have, but it certainly felt like you knew exactly what living with fibro is like. I just wanted to say, thank you for putting into words so exquisitely and so eloquently what I experience every day.

May I link to your post as well?
18th-Sep-2009 07:06 pm (UTC)
Ooops - I'm getting my usernames mixed up...I meant that amethyst_clan sent me...
18th-Sep-2009 07:35 pm (UTC)
Yep, fibro is one of mine; it's the one I was thinking of most when I wrote this.

Link away!
18th-Sep-2009 07:05 pm (UTC)
I've been eying that piece since you first put it up. Have no hope of actually GETTING it, but appreciate it aesthetically nonetheless.

Just went and gave a little, because I know what it is to miss your heartfriends. I have been scrimping and saving to go see one of mine for a year now. I'm hoping in December.

I am loving the poetry. I am loving it. I am loving it. Keep it up.
18th-Sep-2009 07:35 pm (UTC)
Thank you! <3
18th-Sep-2009 07:14 pm (UTC)
This is so beautiful and so descriptive. I love the last verse especially.

(here via )
18th-Sep-2009 07:45 pm (UTC)
oops. That should've said "via amethyst_clan".
18th-Sep-2009 08:31 pm (UTC)
this is beautiful and made me realize just how poorly i'm coping with my own i.i., job loss, basically everything - so now i'm sitting here crying again (but it's ok - epiphanies hurt sometimes)

thank you, and this at least for me, was what prompted another donation i shouldn't really be making (this piece is worth much more than i could rationalize sending, but...)

if it's alright with you, when i can get my head together enough i'd like to link this in my journal as part of an entry - i need to figure out how to cope better and i'm hoping this will help since it moved me so much

Edited at 2009-09-18 08:35 pm (UTC)
28th-Sep-2009 12:29 am (UTC)
Feel free! And thank you!
19th-Sep-2009 12:58 am (UTC)
thank you for putting into words what i have not yet had the strength, energy, or level of acceptance to do myself...
19th-Sep-2009 12:58 am (UTC)
like Orpheus, you turned your head,
and health fell away.

Especial wow for that.

Well said, all of it. But that line got to me the most.
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