George William Knauer - Suddenly Dark: Huntingtons Disease: My Familys Deadly Secret

Suddenly
DARK

Huntington's Disease:
M y Family's Deadly S ecret

GEORGE WILLIAM KNAUER

Copyright 2016 George William Knauer.

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the author except in the case of brief quotations embodied in critical articles and reviews.

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ISBN: 978-1-4808-3012-7 (sc)

ISBN: 978-1-4808-3013-4 (e)

Archway Publishing rev. date: 4/7/2016

Contents

Dedication

I dedicate this book to my family, my friends,

and my community, Coxsackie, New York,

where I have lived for the past forty plus years

for helping me squeeze the lemons into lemonade.

Acknowledgements

I am very lucky to have beautiful friends like Marie DeFrancesco, Margaret Quigley and Anne Foster. They have helped and encouraged my writing. As a plumber I have always worked with tools. They have provided the tools I needed to write this book.

A retired English teacher, Marie became the can opener of the mind forcing me to empty out a life time of memories both good and bad. She spent countless hours helping me with typing and editing as we went along. Margaret has always been a positive, re-enforcing force from the beginning. She has been a pillar of strength for me. Anne was the one who insisted that I should start writing my life's story. She spent innumerable hours helping me recall my memories, typing and editing as we went along. I would also like to thank James Pollard for contributing his invaluable knowledge of Huntington's disease.

Victorious

George William Knauer

I shall not be a victim, but "victorious."

Death battled me almost to a draw.

It left my life but took my sight,

Leaving me as a knight to do battle

With life's uncertainties and fears.

Above my bed is a four-foot steel sword.

As I arise each morning with the crack of dawn,

And the sun creeps above the horizon,

The sun with its brightness

Refuses to penetrate my darkened eyes.

I grab my sword and put on my armor

To do battle each day.

With a tear rolling down my cheek,

As the warmth of the sun races across my face

Like the wind across a gentle meadow,

I go out into the world to do battle,

For I am a prisoner in my chamber of darkness.

I may not see the written word

Or all of the beauty God has put around us,

But that does not determine life for me to live.

From the depths of the deepest seas to the highest mountains,

From the arid deserts to the lush tropical forests,

There is as much beauty in what is unseen as there is in what is seen.

There may be fear, there may be pain,

But it will not conquer, nor will it win.

In darkness there is light; there is fear, and there are tears.

I may stumble and fall on the rocky road of life,

But I will not quit, I will not fail,

Even though the darkness covers my day as it does my night.

I cannot die, for yet I have not succeeded.

There are things to be done,

There are words to be written,

There is a life to be lived.

For failure is not an option. I will be victorious.

Now that I am in my mid-sixties and reflecting on my life so far, I realize it has been one hell of a journey. I don't blame any of my misfortunes on my family or childhood circumstances, including foster care from age two to seven, Wiltwyck School for Boys from eight to twelve, being returned to a house full of strangers, and a lifetime of dealing with Huntington's disease in my family. This book is about survival: a lifetime of dancing with the devil and not giving in to life's demons

Death, that miserable son of a bitch, has been chasing me since I was an infant. At eighteen months I was almost dead from pneumonia, dehydration, starvation, and weighing only eighteen pounds. At the age of ten, in the middle of winter, I fell into the low side of a dam and quickly sank to the bottom. Seconds before death, I was snatched from the frigid waters. At the age of twenty three, in a middle of a blinding snow storm, I drove off a fifty-foot cliff crashing through the frozen river and sinking to the bottom. Somehow I managed to get to shore. At the age of twenty seven, while headed home from a job with a little excess speed, I rounded a sharp corner. Ten feet before the railroad tracks, I heard the train's whistle. It was too late. I hit the lead engine broadside and bounced off three or four additional locomotives. When what was left of the truck finally came to rest, I was extricated. Death has continued to chase me over the past sixty-six years. In 2002, a critical event caused my near-death experience and total blindness. On August 5, 2006, I fell out a third floor window crashing onto the cement sidewalk below. I've been re-built with some extra screws, bolts, wires, and pipe. I will not let life-altering events get the better of me. God has a reason for keeping me here.

If there is anything I have learned, it is that you can't plan your life because it can change in a blink of an eye, or in my case, the blink of both eyes---FOREVER SUDDENLY DARK. Sit back, and let me start from the beginning.

I wanted to write about my life from the beginning, but I have no memories of my own until the time I was placed in a foster home when I was about two years old. I don't remember the birth of a brother or a sister, being held by my mother and father, birthday parties, sibling rivalries, or as most people can recall, stories told by their parents. For the years before the age of eight, I have to rely on what I have gleaned from court records, documents, and conversations with older siblings. I want to thank my Aunt Tootsie (Evelyn) who at eighty-four was invaluable in putting this together.

My mother, Lillian Beuscher, was born on September 8, 1919 in Brooklyn, New York of Herman and Aurelia Walker Beuscher. She was one of six children: four girls and two boys. I will give you a little of her family history because it will help to make sense of what happened later in my family and my life. Through court records I have been able to trace back to approximately 1810 to my maternal great-great grandparents. My grandmother Aurelia died in Creedmoor State Hospital (an insane asylum) in 1937 of what is now known as Huntington's disease. She had been diagnosed as having psychosis with mental deficiency. Her brother went to the psychiatric hospital in Poughkeepsie New York. My great grandmother was known to clean one day and live in filth and disorder for the next six months. She had an explosive temper and irrational behavior patterns. Up until the 1950's, before Huntington's disease was identified, people with these conditions were institutionalized and considered crazy or mentally deficient. Their erratic movements often made them appear to be stumbling drunk.

My father, Arthur Jack Knauer Sr., was born on March 25, 1914 in Brooklyn, New York. His parents were Jacob and Mary Odell Knauer, born in New York City. He was one of eleven children: seven boys and four girls.