Every Line has a Story

Andrew Meinen By Andrew Meinen, 18th Sep 2013 | Follow this author | RSS Feed | Short URL http://nut.bz/1ps7fs63/
Posted in Wikinut>Family>Daily Life

A story born from real life experiences from voices withing the HD community.

Every Line Has a Story-INTRO-

One late summer day as I sat contemplating life a sudden desire to write was born. I felt a need to tell the story of so many who suffer from Huntington's disease. I wanted to be a voice for those who had no voice. The story is broad and varied, there is not one single similar tale, yet there is one common thread. That commonality is the HD gene. My own experience and our story will be told, but throughout the storyteller will infuse other experiences so people take notice of those who walk this horrid path. Therefore, let no one claim to know which life experience can be linked to a certain person. The tales are real, the names are not.
In the beginning this desire to write was born out a deep desire to connect again with others, as often I feel so alone with this world. Now, try to understand I am not looking for self pity or for that matter, yours. I want others to see a snapshot of a world many fail to understand. Nor will pity move us along in our search for the cure. But, what will is when you take a moment to pause, and then demand change. For twenty years I have heard, “a cure is just around the corner” We need to demand that more resources be given to HD research. We need to demand that change in an understanding of this disease is needed. And finally, we need to demand that terminally ill patients deserve a voice in the treatments they seek.
My own wife lost her mother to HD in 2005. My wife Hanna (Hannita) was diagnosed in 2007 by which time symptoms were already present. I watched the disease take its toll on her mind and on her body. So many details could be told, but I don't suppose for a minute I could cover each experience, much less the totality of it all in one short tale. Soon, my thoughts turned into written words, now I was on a mission. I wrote this simple poetry one night, not much really except that it tells a story.

What do you see when she enters the room?
Well, come on, do you see a young and vibrant woman,
Or, did you see her stumble and fall?
Well friend, it wasn't like this once.
She could dance on clouds with laughter.

What do you hear when she comes to her feet?
Did you hear a beautiful lady say an embarrassed hello?
Or, did you hear gnarled frustrated words spill from her mouth?
Well friends, it wasn't like this once.
She could sing like an angle and love in whispered tones.

What do you feel when she twitches and jerks?
Do you love this woman who looks shattered and frail?
Or do you pity her and wonder where she went wrong?
Well friends, it wasn't like this once.
She moved with grace and could flutter on the wind.

Now let me tell you what I think, if you got the time to spare.
When I see her, my eyes light up and I realize, I love her.
Oh, and when she speaks, I hear the woman, I love, 
I hear her love, and at times her rage, but I hear the woman I love.
And if you must, ask me how I feel, I love her.

Now, true I stand in fear, and not sure I'm up to the task.
And yes, I understand why so many would simply walk away.
But, on the left had there is a band, and it reminds me I said yes.
I recall those words today, In sickness or in health, till death do us part.
I promised her, before God and people, I do. And you know what? I do, I do, I do.

Now, what do you See?
Then, after receiving some positive feedback, I was inspired to write another.

Can you Imagine?

Waking up one day, and life changed?
Just for a minute, take a walk with me.
Down a less known path.
We are walking with a victim.
With one who was betrayed.
By her own body.
Now, it stared with just a twitch.

Well, as we walked along this broken path.
She began to show us the scene.
Of muscles that failed to grasp,
of falls and bumps which tell a tale.
Of people who swore she was drunk.
But, all this she can handle, 
it's the other things that wear.
Now, walk with me some more.

Ya, i understand if your tired and turn back.
But, please stay upon this path.
Take this ladies fragile hand.
Were you surprised she was so young?
Did you hear what hurts even more.
The constant pain you cannot escape.
By joints whose strength has failed.
That hurts, but what is even worse.

The mind which she cant control.
Moments of love can turn to rage.
Strangers stares can break her will.
If she hurt you, she hurts more.
Old memories still shine out, but
remembering the day is hard to do.
Her jagged and ragged voice,
did not mean what you heard.

Her hands, they are hands of love.
That slap you felt was not her hands at all.
To love her well, you must understand.
the darkness that sometimes shows,
is not the lady we walk with.
No, not the woman we love well.
No, the broken pictures you saw.
was somebody else.

Now, yes turn back, but when you go,
could I ask to to share this tale?
I must continue down this path,
for one must hold this ladies hand.
But please let others know,
we can beat this "somebody else."
Do not fail to shout it loud,
We can beat the HD gene.

Huntington Disease, yes I walk on.
Knowing you will help find a cure.

Shortly after posting the above on Facebook, a friend remarked, “that was touching and beautiful.” Another wrote, “That was beautiful, I cried.” Others confessed to goosebumps and I was encouraged to be a storyteller, so others understand and act. Another common story that is told in the HD community, is a story of faith. I will not hide that nor change it, in fact I encourage it.
I responded to the encouragement by deciding not to be silent in the face of the foe. Nor will I hide the ugly face of it. No, the stories need to be heard and so I write. "Every Line Has a Story," is my small attempt at being heard.

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Comments

author avatar Fern Mc Costigan
19th Sep 2013 (#)

Nice post and deep words

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author avatar Stella Mitchell
19th Sep 2013 (#)

Andrew ...dear faithful man ...God bless you and your wife ..may He uphold you both through this stormy sea of life and bring you both safely through to calm shores and still waters , where you can know peace and rest from your trials .
Thank you for this very moving post .
God bless you always .
Stella

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