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My Body has Betrayed Me
by Tracey A. Will
I am living each day
Jailed in this broken body
That surely can't be mine.
This body doesn't move well,
This body can't talk right.
This body bumps into walls and doors
It stumbles, it trips, it falls.
This body is a cruel imposter.
This body is bloated and shapeless
It doesn't fit into my clothes or shoes
This body can't run or even walk some days
It can't exercise without falling into a heap
Of feeble useless exhaustion.
This body is a fraud.
The body is stranded in some insidious wasteland
Where used up shells are forced to reside
Suffering through some pathetic half existence
Worthy of only the lame and hopeless.
Not even in my college days
Of pulling all nighters to cram
Or partying till the dawn
Or popping diet pills to lose five pounds
Did my body rebel like this.
Not even when wracked with fevers
Or wretching with flus
Or twisted and stretched past all possible limits
With the agony of childbirth
Did my body surrender like this.
I am locked between the frustraton of being misunderstood
And the sickening emptiness of being pitied.
Somewhere in between I am forced to exist
Wishing for understanding and empathy
Without sympathy and sorrow.
Yearning for friendship and strength
Without fear and avoidance.
My body has betrayed me.
God, help me to remember
That as long as your spirit lives in me
My spirit still lives.
My spirit still lives.
Tracy A.Will
April 5, 2008
OUR LADY OF EXHAUSTION
Doctor,
Your palace walls are hung with
the mandalas of the ancients.
Your eyes blaze the fervor of the true believer.
Too much self, oh wise one. Too much of you.
You, the Grand Inquisitor.
Me, Our Lady of Exhaustion, on the rack.
The inquisition asks the questions.
But look. I am an open book.
Yet you have missed the important parts.
Here is what I am wondering, human brother.
You have studied with the great ones,
hanging degrees upon your wall.
But do you imagine that you have learned so much more than I?
My crash course in suffering and loss, pain and joy,
has been a ten year journey in the vast classroom
of my bed sheets.
My teachers too are great ones.
When so exhausted that only adrenaline fumes are powering me,
it is hard for me to speak from my soul as you demand.
A disadvantage, I think-
you full of power, and me full of desperation.
The Catch-22's of the land of Gurus!
Listen.
I have come from the benign neglect of the streets of Chicago,
through the alchemy of illness,
to the malignant, pulsing succor of the mystery of Earth.
This is what keeps me here, this aliveness of both body and beast.
Do not torture me and demand allegiance-
too high a price to pay.
We are all called to wonder in awe at one another-
our ignorance, our innocence, our ambivalent hope.
The path is different every time
though the space around it pulses with the same heartbeat.
Doctor,
Listen to yours.
Listen to mine.
Calgary, Alberta, Canada
Poetry and Artwork of Lyme Sufferers
Flower Shadows
Carol Hechtenthal
Calgary, Alberta, Canada
Watching Birds in Flight
Photo by Chris Burgess
Piece of Me
Sometimes I am terrified
Seeing pieces disappearing
Trying to refocus
But seeing is believing
Crying for a lost life
Unsure of what is left
Refusing to believe
That this is for the best
Birds looking in my window
With curiosity
Wondering why I’m lying here
Unable to be free
The pain I’ve come accustomed to
Has taken most of me
My soul cries out for someone
To grant serenity
By Susan Chacon
April 10, 2008
Apple Valley, California
Susan also submitted the photograph by
Chris Burgess
College Tuition
By Adrian Schlesinger
Spirochete Dancing
by Jennifer Duncan
This painting was a result of me trying to visualize what my blood looked like with the Lyme spirochetes in it. Of course it's not the scientific version of blood, but my interpretation.
J.D.
Nature's Keeper
He is 80 years young and was living life to the fullest in this land amongst the sugar pine and dogwood trees.
All of his days used to be good days, but that was in the past.
His pets all given to him by God, wild creatures who come and go all day eating land food and drinking fresh water from the old gray fountain.
This man’s binoculars are always close at hand so he can keep eye on his beautiful menagerie. He loves life and nature.
Two years ago his picture perfect life took a dark turn when he got sick from a western black legged deer tick.
Probably dropped on his property by his beloved wild animal friends.
Today this strong, stout man is not having a good day.
He lays back, feet up on his favorite lounge chair watching golf, rather than playing it like he wants to, like he used to.
He thinks about what he would rather be doing. Maybe head to Tiger Creek or "Crick" as he pronounces it, and fish?
Maybe a walk to the club house with Dolores? No today he must rest. He resigns himself to that notion.
He reminisces in between cat naps. It’s been a good life he thinks, tomorrow will be a better day, he hopes.
He looks out the window and sees a buck that
he knows well, mama and the fawns must be nearby.
He notices that all his bird feeders are swarming with birds.
A squirrel sits perched on the feeders edge, gorging himself on seed, his furry tail jerking up and down, warning away the others.
The juncos and a lone dove are picking seed that dropped to the ground from the feeders.
He happily remembers that he filled all the feeders yesterday when his energy was a bit better.
Dolores brings him his antibiotics and covers him with a blanket.
She smiles as she watches him down his medicine.
She is always so happy, a mystery to him especially since her stroke, shortly after his Lyme diagnosis.
What would he do without her; he doesn’t care to think about that anymore.
So much this man wants to do and see and will do and see.
He knows he will have good days and he is learning to expect them in between the not so good days.
He knows his life is still good in spite of the danger his pets carry and drop on his property.
He does not blame them, he does not want them to leave, and he will most certainly not leave them.
By Elizabeth Neal
Santa Cruz County, CA
Nature's Keeper
Elizabeth Neal's Dad
Lyme is a Thief
Lyme you are a thief,
You stole my daughter's energy,
Her health, her happieness;
Then you drained her creativity
In their place you left her pain,
Despair and incapacity.
Still you wander free,
Unhindered, sapping life.
P.V.O. Groton, Vermont
Ein Heldenleben (A Hero's Life)
Ein Heldenleben - not just a broken record -
but a symphonic creation made of everyday things;
This life as it is, not as I want it to be -
For it is a hero's life -
to walk, to think, to love, to feel,
to wash dishes, to write a letter,
to make a meal . . .
How I used to strive toward the grand
and impressive; how I wanted
to stand out -
But, Ein Heldenleben I have right here
in the suffering dreams of broken sleep,
the inflammation and pain around my neck and shoulders,
the endless fatigue, the missing thoughts, the lost affections -
While the birds sing for me
and the sun shines for me
and the rain falls
and someone who loves me wants to hear my voice
When all around me and yet within me
the Supreme Identity alone
knows who I am.
Ein Heldenleben then . . .
Transcendent in beauty becomes
a Tone Poem of my fingertips and my heartbeat,
the tiny blades of grass then the harps
and trees mighty trumpets,
her voice over me a cello,
strangers a woodwind choir,
And then this suffering the counterpoint
woven carefully and so fine
within this skillful orchestration:
Listening between notes
is a halo of vibration -
plaintive as the wonderful mystery
of God - in overtones that give Ein Heldenleben
the solitary and unmatchable sound
that alone remains
after the last pianissimo -
After the last trumpet -
After the hero has fallen asleep . . .
by Glenroy Wolfsen, High Bridge N.J.
© Copyright 2008
wolfsen@embarqmail.com
You Are Not Your Body
Climbing the Health Mountain
by Julie Strasheim
This painting was done by Julie for her sister Connie's book "The Lyme Disease Survival Guide" For more information on Connie's book visit her blog by clicking this link:
Lyme is a Thief
P.V.O. Groton Vermont
Trees
As the afternoon moved in
So did the mist hover among the hills,
Just tops of evergreens
Touching the gray clouds.
All below in the valley silenced, invisible -
No moving thing to measure
Against the steady rain.
Peace kept me from wanting to visit
Beyond this hillside view.
I would rather that those below
Had become ghosts for a while,
Spirits less real than this ethereal dream
I shared with the few dark, bare trees
Writing a serene hieroglyph
Against the sky.
-Glenroy B. Wolfsen age 67 New Jersey
I will never forget this day. I don't know why, certain days just linger in memory.
I had driven up the hill to the shopping mall in the next town probably to stop for some food I needed. But this day in November, 5 years ago - was cold, damp, misty and the fog was moving in. I remember oh so well, how the head fog was so bad that day, and it matched perfectly the outside weather - my inner weather and the outer weather just then came together.
I didn't get out of my car - but just turned off the engine and sat - feeling all my surrounding surreal ( or more, perhaps an inner isolation, making the external seem surrealistic)- and where I was parked up on the hill, the valley below was becoming slowly invisible - and I on the hill, alone and in my own invisible fog inside my head. Then it came to me that I might write how it felt - and I remember so clearly now how quickly the words came - so I give you now this single moment (as a snap-shot) in the long agony of mind-fog - one day where all this came together in the inner and outer weather: -Glen
The Mask of Lyme
I sit here writing to you behind the mask of Lyme.
I know this mask looks so much like me you can hardly tell the difference;
But the eyes of this mask don't see like my real eyes,
the ears of this mask don't hear like my real ears,
the mind of this mask doesn't think like my real mind,
the heart of this mask doesn't feel like my real heart,
even the arms and legs of this mask don't work like my real arms and legs -
But I sit here writing to you in a place I keep secret
from this mask -
I call it "the secret place of the Most High."
Here I have been shown my body perfect, alive, healthy, beautiful
in the mind of God. Even now
filaments like a spider web connect that body with this mask -
along those silver threads the water of Life flows
with strength to restore my Soul.
It paints a picture of this subtle body in my mind's eye
so I have a place to live when my mask comes off.
When the sun heads West in the warm afternoon -
I will take this message to the shore,
then send it in a bottle out on the sea of life -
If you should find it - remember it was written for you,
or it would not have come shore where you walk in the cool evening
among the gulls and sea birds - the stars and the sea glass -
Remember me
behind the mask
where the subtle body has found me
with its invitation to the banquet
around the table of the Master of the Feast.
Remember I sit here a perfect being
behind the mask of Lyme
about to cross the bridge between the seen and the unseen:
I send you love.
Nowhere have I found such love
accept behind the mask of Lyme,
here - in the secret place of the Most High,
here - where this mask you see
cannot find me.
Take this letter home -
and when night falls and you find your bed
hold it to your heart
and know, in the place there no shadow turns
That what ever mask you wear
an invisible hand caresses your face
and lifts its countenance upon you
and keeps you where His face can shine upon you
and where He will give you peace
forever more.
8/13/08
© Copyright 2008 by Glenroy Wolfsen. All Rights Reserved.
wolfsen@embarqmail.com <>
Lying Awake
by Wendy Mathias
Tulare, California
Lying awake wanting to sleep,
my heart going so fast sometimes skipping a beat.
My blanket I get under for comfort and heat.
Why it is my brain won't let me sleep?
Is it the Lyme bacteria in my veins going beep, beep?
Why is it they don't need to get any sleep?
My body a host to so many foreign things,
its no wonder that they are attacking my brain.
These things called bacteria,
so many different kinds.
Each one doing damage to the body parts they hide.
I wish my body was not a home in which
they wish to reside.
But, they did so I have to deal.
As they use my body for every meal.
They live in my blood and make me sick;
I wish it was not my body they decided to pick.
They live in my brain and my intestines too.
I wish I could squish them with a big ole shoe.
PEACE
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