"The music is different now. But it's still there."

First an update on the blog- I have added email subscription to make it easier to keep up with the blog. You simply put your email in on the right and will get an email every time I add a new post.

I have been reading a lot of poetry and came across this book online called "Poetry of Pain" by Linda Martinson. She has fibromylagia and used poetry to express her feelings, finding solace in writing. I ordered the book, it's small, but her words are powerful. It resonated with me because I could relate with all the phases of chronic pain that she discusses. I'm going to copy my favorites. Please remember, you're not alone.

Supermarket Concessions

I am paying for my groceries
at the check stand.
"How ya doing?" he asks.
I look at his eyes, tempted
to startle him with the truth.
But he doesn't really want to know.
So I opt for a nice, neutral,
bland word that means nothing.
A fat word that fills the mouth.
"Fine," I say to his shoulder,
"I'm doin' just fine."

Dark Times

I am awash with pain, my tyranny.
It covers me like seaweed,
clinging, stinking;
the salt is in my wounds.

Searing my muscles with perpetual passion,
pain invades my mind,
my privacy.
Afraid I am drowning
when I so want to live,
I cry.

The Yearning

I used to go to sleep
with my head
on his shoulder.
I'd curl into the
hollows of his body
and he'd read to me
from a book
just boring enough.
Oh, how I miss the
intimacies of love!
The prickly outline
of his beard
undulating in the lamplight
as his lips formed words,
the gentle sound vibration
that tickled my hand
as it lay upon his chest,
the soft distraction
of his cheekbone
waiting for my kiss.
Pain,
Oh Wicked Pain,
must you steal this from me too?
Must you dictate
every aspect of my life?
Let me lay
as lovers lie
without your insidious presence,
my head upon his shoulder
once again.

Acceptance

I get so frustrated when I want to work
and I can't because my body fails me.
I grieve for the energy I used to have,
for the days when I would erupt out of bed,
ready to go.

Lost time.
Lost life.

I miss the spontaneity of good health,
when I could do simple things,
like go for a drive,
or dance,
without having to consider the toll
on my body.
I miss the fun.

Still...
I can't let the past rule my today.

So I will recognize my grief,
roll around in it,
and mourn my loss as I would
the death of a beloved child.
For only then can I get beyond it.

The music is different now. But it's still there.

Be ignited

Sorry for the absence. As normal, life has kept me on my toes, but very much off my feet. I was in the hospital for a week with a severe headache and bad blood work. It was a scary time, especially when I got woken up at midnight for a doctor to tell me on the phone I had blood clots in my brain... a diagnosis that was simply "taken back" the next morning. Somewhere a doctor went, "whoops." It's been awhile of not understanding what was wrong with me, meningitis and a rare tick disease were on the table, but after getting some results back today, it seems to be a severe case of mono. So I'm just resting and recovering to get my strength back and going in for blood work every few days to monitor my liver, etc.

This means no surgery in a few days- we'll have to push it back for a month or so until everything returns back to (semi) normal. When I first got out of the hospital I was so relieved and embraced life. That soon transformed into anger and sadness. The whole, "why me," "how much more can I take?" But that has passed quickly and I've moved on to acceptance and appreciation. I am so blessed for the family that continuously takes care of me. I am thankful for the friends who visit me in the hospital, send me cards, come and hang out on the couch at home, call, care, and accept that I have to devote my time to taking care of myself. It is a relief to know they are always there for me and love me unconditionally.

And even though my spirit is growing restless and just wants to get outside and do all the things it loves, I know my body isn't nearly ready. For once, that's fine. If my life needs to slow down, then I am going to enjoy the time with my family, I'm going to write, I'm going to read, and I'm going to live in the moment and not worry about what's going to happen or where my life is going. I'm going to embrace the couch.

I know how scary and frustrating living with pain is, especially when we cannot control it. Yes it's something we have to live with, but it doesn't have to be what we live for. I'm not saying we have to pretend to be happy with the situation or hide from our feelings, but we can look for the little magical moments that make us want to get up in the morning. We have only this life. So cry, laugh, scream, smile, but make sure you allow yourself to feel. I have two things to share with you. The first is an excerpt from a Mary Oliver poem (I highly recommend reading her work.) The second is an original that I wrote the other day while embracing my couch. Warm wishes.

Just yesterday I watched an ant crossing a path,
through the tumbled pine needles she toiled.
And I thought: she will never live another life but this one.
And I thought: if she lives her life with all her strength is she not wonderful and wise?
And I continued this up the miraculous pyramid of everything until I came to myself.

--------------------------

The Field

Barefoot and barely breathing
I stepped cautiously out
into the great, wide field-
my feet roughened by the stiff
blades of cold, dead pasture.

Surrounded by silence only broken by
the wind whispering through the night
and the slow breaths escaping from my lips-
I continued forward, searching for the center.

I felt nothing.

Alone and afraid
I sank to my knees,
disappearing into waves of brown.
The wind stopped and
all stood still, waiting.

Imprisoned by my own thoughts
I ignited my escape,
casting it out into the blackness of the night.
And I continued forward, pausing only to glance back.

I watched the flame become a blaze.

Bathing in its fiery glow
I watched the fire dance
under a limitless sky, as the stars joined in
Even the shadows and the smoke swayed
as the field came alive once more.

Engulfed by the crimson glow
and entranced by its crackled cry,
my breath became a pant-
I closed my eyes, feeling the heat take me.

Be ignited or be indifferent.