The Brown-Eyed Girl

Mama, "Why is she BROKEN?", the girl asked, tugging on her mama's sleeve. Both of her georgous big brown eyes were intently staring at me, one arm firmly attached to mom, and the other elbow deep down the back of her pants as she scratched at some hidden irritant.

Mama was busy - too busy to answer her, too busy to even slow the frantic pace at which she pressed the clerk to continue calling all the stores for a specific garment in a specific size, just right for her. The Brown Eyed Girl scratched and stared, repeating her query to Mama at ever smaller intervals, in an ever louder voice. Mama, in her stylish clothes, fit body, and what could only be described as "shopping ferver", never missed a beat. Her efforts to find her "Perfect Blouse" were equal in intensity to her daughter's efforts to find out why the strange looking lady was "broken".

Could I feel the heat from his embarrased, red face from behind me, or was that just my imagination? I sat there in the borrowed mall wheelchair, breathing through an oxygen canula, my lap piled high with new clothes for Will, pretending not to notice that I was being stared at like some freak at a side show.

Will, who had waited patiently for weeks for me to have a "good day" so we could go to the mall. Will, who at the age of 12 has to push his mom around in a wheelchair if he wants to go to the mall. He had been so tireless, so respectful and kind during the whole shopping trip. Maybe his embarrasement was just my imagination, maybe he wasn't even paying any attention to the Brown Eyed Girl. But on the other hand, maybe he was.

After what seemed like forever, I leaned around and suggested to Will that we go to a different checkout counter. He didn't say a word, just started pushing me and we went on our way. His silence confirmed my fear, for you see, Will is never "silent". We escaped the gawking stare of the scratching, tugging, questioning Brown Eyed Girl.

But the words echo still, "Mama why is she BROKEN?"

Mama
Why
Is
She
BROKEN?

*B*R*O*K*E*N*

*B*R*O*K*E*N*

Mama

Why

Am

I

Broken?

GOD WHY AM I BROKEN?

WHY CAN'T I GET WELL OR DIE AND END THE PAIN? WHY THE BROKENESS? WHY THE MIDDLE GROUND? THE SUB-EXISTENCE BETWEEN LIFE AND DEATH IS NO EXISTANCE AT ALL; DYING MORE EVERY DAY, BIT BY BIT, ONE NEW DIAGNOSIS AFTER ANOTHER IN A CASCADE OF PROCEDURES, CODES, DRUGS, DOCTORS, AND HOSPITALS. TRYING TO MAINTAIN SOME TYPE OF DIGNITY AND POSITIVE OUTLOOK THROUGH IT ALL - FOR THE SAKE OF MY CHILDREN. I ADMIT THAT SOMEHOW, IN THE BACK OF MY MIND, I ALWAYS THOUGHT SLOW WASTING AWAY WAS A TORTURE UNIQUELY RESERVED FOR THE "WICKED". THAT MY LOVING GOD WOULD BLESS HIS BELIVERS WITH QUICK AND PAINLESS TRANSITIONS OUT OF THIS WORLD. I KNOW THAT WAS JUST A FANTASY, A WISH THAT I THOUGHT WOULD COME TRUE IF I HELD ONTO IT LONG ENOUGH. NOW IT HAS COME TO THIS. A WRETCHED, CRUEL EXISTANCE THAT REVOLVES AROUND PILL SCHEDULES, INJECTION SCHEDULES, TOO MUCH SLEEPING, AND A CONSTANT TETHER TO AN OXYGEN MACHINE. IS THIS MY REWARD FOR LOVING YOU? FOR WORSHIPING YOU? FOR TEACHING MY CHILDREN TO LOVE YOU? FOR BEING FAITHFUL? MAYBE IT'S TRUE THAT YOU AREN'T EVEN AWARE OF ME - ME PERSONALLY. IT'S EASIER TO BELIEVE THAT THAN TO BELIEVE YOU ARE ALLOWING THIS TO HAPPEN. I DON'T WANT TO BELIEVE THAT YOU KNOW ME PERSONALLY, THAT YOU KNOW WHAT IS GOING ON, THAT YOU SEE MY BODY WASTING AWAY AND THE PAIN IT IS CAUSING EVERYONE. I DON'T WANT TO BELIEVE THAT YOU WOULD LET THAT HAPPEN. NOT TO ME, AND NOT TO AUNT MARY, AND NOT TO OLAN, NOT TO DICK. I HAVE TRIED FOR SO LONG TO HOLD ON, TO BELIEVE, TO FIND SOMETHING GOOD IN EVERY SITUATION, BUT I AM SO TIRED, SO VERY TIRED.

WHY AM I BROKEN?
WHY IS SHE BROKEN?
WHY WERE THEY BROKEN?
WHY? WHY? WHY? WHY?

Yes, it's true I am broken. Broken from the inside out, thoroughly broken in spirit and flesh. But my broken heart aches the most of all.

Tapestry

A slight flaw, perhaps a tiny frayed thread, hardly noticeable.
It appears then disappears unobserved
- the tapestry is strong enough to heal itself.
It overcomes without so much as a whimper or sigh.
Life goes on, not a beat missed, the infirmity instantly forgotten
- erased as quickly as it came from the collective memory.

More and more come and go just as quietly, just as quickly, yet over time, inch by inch, thread by thread, the fabric is weakened.
Still subtle, only noticeable by the fibers themselves, scurrying to heal and keep up "the pace" of life, hoping to keep their weakness concealed.
After all, weakness is 'bad', and slowing down is for 'losers'.
Above all, they must band together to protect the image - keeping up appearances is so important.

From a distance, the tapestry looks new, flawless.
Shimmery in all the right spots, boasting dramatic scenes and intense colors.
"Most people" don't look any closer.
They don't notice the secret scars lurking here or there, next to the print of a gilded leaf or a lofty branch
- the surrepticiously mended spots, tended in secret by the fibers themselves, always scurrying about to hold it all together, lest anyone notice, lest they fall behind in the race, lest they show signs of weakness.


"Most People" are just too busy to notice.
And that suits "everyone" just fine.


After years or decades of hiding, the strain becomes to great, the burden of disguise to heavy, and a threadbare section is revealed.
Aghast, "everyone" takes in a shocked breath and stares at the gaping hole, knowing the truth deep inside, but never daring to speak it
- the truth that with no threads left, there is no way to heal.
No way out, no inner strength, no way to mend.

Having witnessed the pattern before, "they" all induldge their own favorite flavor of denial.
For the truth is that the future holds only more bare spots, threadless, gaping, ghastly holes where there was once a lovely tapestry.
They will keep coming, one upon the other, ever more quickly as time goes on.
The fissures will grow, new ones will appear.
Desperate attempts to patch things up with all manner of devices - needles, looms, and exotic skeins give glimmers of hope, but never the permanency of healing.

Because the secret lies within.
The tapestry must have enough strength within itself to heal.

Would things have been different if better care had been taken in earlier days?
If those subtle tears and signals had been listened too more carefully?
If the tapestry had been cared for with more tenderness, more love even?
Or perhaps, was there a fatal, insidious, invisible flaw right from the beginning that would inevitably reveal itself and its' ruinious intent?

Is there enough strength within for healing, or has it been squandered away in the great competition?

Look inside, then.
See what's left.

Something

Alone then not
Either way feels wrong
A piece that doesnt fit
... anywhere
... anymore
What to say, what to do
...whats the point
...anymore
Unsettled in my own skin
....my own body a stranger to me now
Was there ever a point
...to this life
...to any life
...to this day
...this hour
...this minute
...this second
Aliveness is a faint memory
Pain is so familiar
...easing up beside me
...getting comfortable
...makig itself at home
...burrowing its way deep within my bones
...gnawing away
...grinding down
...inching further and further into places it doesnt have permission to be
Pain respects no boundaries
....no schedules
....no plans
....no place
....no lives
....no one

Small Things

Small changes, just a little at a time. So you don' t really notice too much; but the friend who hasn't seen you for a year gasps in disgust before quickly hiding her reaction under an ever so plesant "Oh it's so great to see you again!"

...Though to be honest the friend who hasn't seen you for a year will probably pass by without so much as a glance, not even recognizing the thing you have become.

Little bits and peices; changes; odd things; 'unusual' things; unwelcome things. The inevitable decay that one expects to meet eventually - but not at 41. Such a surprise, such a mystery, to start sliding down that slippery slope at such an age. With so much left to do, so much left to BE.

At our first meeting, I was unstoppable; just a little time; a little rest - all would be good as new. Now we have been constant companions for these 2 years - everything is different. I know the power, the relentless strength, and the me that I was is only a faint memory.

Every assault digs a little deeper, eats away a little more at your belief that one day you'll 'beat this thing', tearing away flesh and bone and spirit; gobbling it down as if it were a delicious treat.

Its so hard to believe when the scoreboard is always against you and gaining.

I had always prayed for a quick death; just to go in my sleep unexpectedly. Seems like a cruel joke to drag it out like this; just a TINY dose of death EVERY DAY and plenty of TIME to watch it happen.

Just small changes, just a little at at time.

Confusing

Very Confusing

I've started the slow slipping down off Prednisone again. There must have been some people praying for me because we all made it through this round pretty well. But the taper down, now thats tricky. Everything is surreal and I fade in and out of life. So much of the time not feeling anything except the pain increasing as the pred decreases. Your voice bounces around in my head mixing up the words in a jumble until what I hear is not what you said. The other voices are there too, calling me, always calling me. The tradeoff is in full swing now. I don't have enough pain meds. The pharmacist treats me like a drug addict. I sit in silence. Is there anger in there? Will it come out some day? What did I just say? Was that me or you? Where is home base and can I ever get there again? Ah, HOME. what a word. what a place. what a feeling that must be, to be HOME.

Is it Possible?

Is it still possible?
To go to the fresh fruit market on Tuesday morning,
To watch a boat race in the bay,
To watch whales while having lunch on a terrace,
To stop on the road and watch that magnificant sunset.

Wednesday Night

Unyielding, pressing in, the ache so deep
Like fire daggers through my bones
The tears flow
They just come when they come; there's no stopping them
Every once in awhile there is a glimpse of the 'old me'
The glimpses are brief, few and far between
Who are they for?
How will it end?
How long will it last?
The distractions are a temporary hide-out
A way to create something beautiful
Even if it's only beautiful to me
To try to hide all the ugliness and pain
To try to remain among the 'living'
While I 'live' from pill to pill
The real me getting sucked deeper and deeper into a foggy pit
A vacant pit behind my blank stare
When I look at you and can't remember your name
Or mine

How it is

Understanding comes slowly.
Unyielding pain and suffocating breathlessness are the messengers.
They give a glimpse, a taste of some who have gone before.
How it is to be under constant siege.
Relentless.
Never Ending.
Until everything ends.
How it is to hold perverse jealousy for those who have made their escape.
How it is to wish it were me instead of them, and to know that is pure selfishness.
How it is to have only a distant memory of life without pain.
How it is to realize it was all taken for granted.
How it is to wish for a way, an avenue, an exit.
From pain.
From hopelesness.
Vic and Bett, I miss you.
And I'm beginning to understand you.
Please forgive me, I never knew.

FAT

I can't breathe and my chest hurts.

When I lay down I feel like I'm suffocating.

-------

That's because you're FAT.

-------

I haven't been able to breathe, and my chest has hurt for 3 YEARS.

I've only been FAT for 1 YEAR.

-------

I didn't hear that.

It's much more convenient to blame your symptoms on your FAT.

Then its all your fault.

Then I don't have to help you.

You do realize, that FAT people don't get any help, don't you?

They get sent away and told to lose weight.

We don't believe what they say either.

In fact, we don't really listen to them at all; we just smile and nod and hope they hurry up and leave so we don't have to look at their FAT ugly bodies.

-------

But I wasn't FAT until the doctors gave me all the drugs that made me get FAT.

It was the DOCTORS and their CURES that made me FAT!!!!

-------

I didn't hear that.

-------

Have you ever taken Prednisone?

-------

I didn't hear that.

-------

Have you ever tried to lose weight on Prednisone?

-------

I didn't hear that.

You are FAT and so I'm not going to help you.

I'm going to send you away so I don't have to see you.

And I don't have to think about you.

Go lose 23 pounds and come back in 6 weeks.

Then, maybe I'll look at you and see a real human being.

Instead of a FAT slob that doesn't deserve help.

Then, maybe I'll listen to what you're saying and maybe I'll even believe some of it.

Stop crying because it makes ME feel bad.

It's not OK for ME to feel bad, just for YOU to feel bad.

Stop crying because it will ruin MY reputation.

It's ok for you to feel like you're dying inside, just don't cry in my office.

Just don't let me have to see your pain.

It spoils my nice, neat, little professional, happy, skinny day.

Just go away.

Quickly, so I can start to forget you.

Because you're just FAT, not SICK.

A Place to Think

I went here once.
All alone I hiked about an hour into the forest.
Then found this lovely place and rested.
The water was ice cold on that hot Summer day.
And I want to go back.

Purpose

'purpose' is a funny thing

you look for it

searching for it

thinking you can't live without it

thinking 'if only', 'if only', 'if only'

once in awhile catching a glimpse of something that sort of seems like 'purpose'

maybe 'purpose' is not something i am can ever grasp

maybe the only way to have a 'purpose' is to not know you have one

maybe it's all much simpler than i thought

maybe all i need to do is

be.

Breathe

in, out

slower

slower

deeper

be still

now. thats better.

don't move

stay cool

in the dark

and you can breathe

is this a life?