Suddenly Dark: Huntington's Disease: My Family's Deadly Secret

By George William Knauer

George William Knauer never had an easy life: He grew up as one of seven children and was placed in foster care after his mother was institutionalized with Huntingtons disease.

He ended up at Wiltwyck School for Boys, a reform school supported by Eleanor Roosevelt. When he left school after the eighth grade, he threw himself headfirst into the plumbing and heating field. He established his own plumbing and heating business, marrying and divorcing five times along the way.

When he was in his fifties, Knauer went completely blind, but he continued to take care of two of his brothersand he kept working as a plumber under the name Blind Mice Plumbing and Heating.

But not everything went smoothly: He survived numerous near-death experienceseven falling out of a third-floor window. After each ordeal, he successfully reinvented himself and continued living life.

In telling his story, Knauer shares what its really like to deal with Huntingtons disease. James Pollard, a world-renowned authority on the disease, has lent his expertise about the disease throughout the book.

• Language: English
• Publisher: Archway Publishing
• Release date: Apr 7, 2016
• ISBN: 9781480830134

George William Knauer

George William Knauer was born into abject poverty as one of seven children. His mother suffered from Huntington’s disease, and he and his siblings were placed into foster care at an early age. He was a successful plumber and owned his own business before going blind in his early fifties.

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Copyright © 2016 George William Knauer.

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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

Introduction

1. Childhood/History

2. Wiltwyck School for Boys

3. Youth

4. A Working Life

5. The Boys

6. About Going Blind

7. Rehabilitation

8. Blind Mice Plumbing and Heating

9. The Flight of the Tidy Whiteys

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.

Introduction

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.

1. Childhood/History

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.

My father had known my mother for two years before they married but had no idea of her family history. My parents were married in the Lutheran Church in Brooklyn, New York in 1940. They had seven children.

On October 8, 1941, less than a year after they married, my father volunteered and entered the U. S. Army in the 308th Engineering Battalion, 83rd Division. At Camp Atterbury in Indiana, he attended school to become a baker and cook. He served in Central Europe, Normandy, Northern France, and the Rhineland between April 1944 and July 1945. He was honorably discharged as Calvary Staff Sergeant on September 12, 1945. He never spoke about his military service to his country and the hell that he had seen in the war. His sister, Aunt Tootsie, told me that when his brothers, like my father, came back from World War II, they never talked about what they had been through, and they began drinking heavily. Another of his brothers, my namesake George Knauer, was in Tokyo when Japan surrendered.

After the war, my father worked in a bronze and lead casting factory. Two years after their marriage, their first child Kathleen was born in 1942, Arthur in 1943, Rosemary in 1946, and John in 1947. I was born on April 16, 1949. Lillian was born in 1950, and Robert in 1952. Robert passed on October 21, 2004 and John on March 26, 2006, both from Huntington's disease, Lillian passed shortly after birth. Mother having seven children over a ten-year period and her increasing loss of mental and physical abilities, were the impetus for the courts to become involved.

Our family was very poor. In fact, we grew up on the dirty side of dirt poor. We lived in a Brooklyn walk-up apartment at 846 Gates Avenue. My father's sister, Aunt Eleanor, and her husband, Uncle Pete, lived upstairs, and my mother's sister, Aunt Tootsie and Uncle John lived downstairs. This was before electric refrigerators were common; the ice man would go through the city streets delivering blocks of ice. Rent was about $18.00 a month.

Evenings, either Mom or Dad would go upstairs to Aunt Eleanor and Uncle Pete's, or they would come down to our apartment, and they would drink and play cards all night. Weekends were the same way---along about midday, our aunts and uncles got together and drank all weekend. Kathleen doesn't ever remember seeing them together when they were not drinking. Our aunts and uncles were heavy beer drinkers, but they all got along and had a good time together.

My sister Kathleen remembers my mother being sick a lot. There were days when she could not get out of bed, and Aunt Eleanor or Uncle Pete would come down and make sure we were okay.

One of our neighbors made an anonymous call to the Brooklyn Society for the Prevention of Cruelty to Children because of my parents' inability to provide a clean living environment and adequate food. This had also happened to my mother's mother and my grandmother's mother. A social worker came and reviewed my family's living conditions. The social worker reported that our home of four rooms was indescribably filthy and foul smelling. The beds were without linens and infested with vermin. Beer bottles were used in lieu of baby bottles. Papers, garbage, and debris were scattered about the floors. My brothers, sisters, and I were thin and appeared to be under-nourished. Both of my parents were interviewed by the Protection Agency. According to the report, they were of limited intelligence, my mother more limited than my father. The report also said that they were cooperative to a degree. Under supervision of the agency, a fair improvement was noted in home conditions. The rooms were painted and new linoleum was laid in the kitchen. During this time, my youngest sister, Lillian was born at home without the aid of a midwife or doctor. She was not even taken to the Clinic for a checkup.

Even with follow up visits, our home environment soon reverted back into the former deplorable conditions. My mother seemed to be even more confused and over burdened with her responsibilities, but she did not wish to have her children placed. My father worked and could give my mother very little assistance in the home. The Society for the Prevention of Cruelty to Children again filed a Neglect Petition on March 20, 1950 alleging that my parents were improper guardians for their six children---that they failed to provide a proper home, to keep the children clean, or to provide adequate medical care for them. Subsequent visits to the home showed no improvement. A finding of Neglect was made.

My youngest sister Lillian, who was born on August 3, 1950, was found dead on October 16, 1950 (three months old) of malnutrition. The police came to our home due to Lillian's death, and this was the impetus for the state to remove all of the remaining children. It was not my mother's fault. Irrational behaviors such as this are part of the inherited disease. In fact, my grandmother had unintentionally caused the death of her first child.

The authorities were particularly concerned about me because I was eighteen months old and weighed only eighteen pounds, suffering from malnutrition and unable to sit up or walk. They took me away immediately. I was placed in the Greenpoint Hospital in Brooklyn on October 16, 1950. However, after a short stay in the hospital, my mother, against doctor's orders, removed me from the hospital. The next day, my parents took the rest of their children to Brooklyn Family Court. The court then sent them to Kings County Hospital for an examination and medical care. A physical and psychiatric examination was ordered for my mother and father.

On January 29, 1952, we children were placed in temporary shelters: Kathleen was nine years, eight months old, Arthur was seven years, eleven months old, Rosemary was five years, six months old, John was four years, two months old, and I was two years, nine months old. At this point I was returned to Greenpoint Hospital until I was healthy enough to be placed in a foster home. (This was the beginning of my being moved from place to place, never having a stable home until I was fourteen and I moved in with Charlie Hancock, my life-long friend. It was the first time that I had what I consider parents, Betty and Bob Hancock. Charlie's sisters Nancy and Bonnie and brother Bob also accepted me into their family. I have also been an 'uncle' to all subsequent generations.) When we went back to court in March 1952, Kathy and Artie were placed by one agency in two different foster homes, while Rosemary and John were placed by another agency into the same home for a short period of time. My brothers and sisters were placed in Ozone Park, New York so they could see each other. My father's great Aunt Eva lived nearby and every few months they would all go to her house. My father, and sometimes my mother, would visit. We were told that these were temporary foster homes and that our mother needed to see a doctor.

On Tuesday, October 30, 1952, Robert was born at home without the assistance of a nurse or midwife. My father decided to hide Robert from Family Court so that he would not be removed as his other children had been. However, he and his sisters feared that the baby would not survive under my mother's care because of her diminishing mental and physical capabilities. Previously, her youngest daughter had died of starvation and neglect. Two days after his birth, my father brought Robert to be cared for by my Aunt Tootsie and Uncle John who lived in the downstairs apartment. Robert lived with her for approximately nine months until my mother called the police, saying that Aunt Tootsie had stolen her baby. My aunt said she would have raised Robert as her own but decided against that idea after the police came. Robert was then raised by Aunt Eleanor for the next two years. Aunt Eleanor lived in the apartment above my father.

On December 8, 1953, my older brother, Arthur was placed with Wiltwyck School for Boys in Esopus, New York. Later, John and I also attended, at different intervals, the same school. I didn't even know that either one of my brothers existed until I was reunited in 1961 with my father.

On March 30, 1954, Judge Kaplan officially and permanently committed four of the children (Kathleen, Rosemary, John, and me) to the Department of Welfare because our mother's health had not improved and my parents were still unable to provide suitable living conditions. We were not to be returned until approximately the age of twelve with hopes that they would then be able to take care of their children. Robert, who was hidden from the Court, remained at home with my father. Because his other children had been removed from his care, my father took special care of Robert.

My sister Kathleen and I were with Windham Children's Services; Rosemary and John were at Brooklyn Bureau of Social Services. In November 1954, at the age of five, I was at a foster home at 114-39 132nd Street, Ozone Park, New York, where I stayed until the spring of 1958 when I was placed at Wiltwyck School for Boys situated in the mid-Hudson Valley. All that I remember of going to the foster home was that there were strange people and I was told that this was going to be my home. I remember climbing up on the couch and looking out the window, crying as the car that had brought me began to drive away. The house was on a tree-lined street at the end of a cul-de-sac. I remember no leaves on the trees and the sky being overcast.

I seem to have blocked most of my other memories from this period of my life. I clearly recall being hit with a strap, being hungry, and sleeping three in a bed. We picked our clothes in the morning from what we had piled at the end of the bed the night before. I have had flashbacks throughout my life of abuse---both sexual and physical. It was a gut-wrenching decision to write about it. I've never spoken about this in sixty-six years. This secret has haunted many of my marriages and relationships with other women. This will be the last mention of it.

After consulting with doctors who believed that good country air would help my mother, my father moved to Pine Bush in the Catskills in 1953. The court did not consider it advisable to release us children to his care when he moved from Brooklyn to up-state New York.

My father worked for a man named George Kline. He and my father had grown up together; one made big money and the other just got by. When George Kline found out that my mother was ill, he bought an old three-story, block-long building and set up a satellite foundry in Pine Bush to help my father get my mother out of the city. My father became the foreman and shop manager of Sellright Gift Corporation's up-state branch, a lead foundry that made lead and brass figurines.

My father got things set up with the business and purchased a home, planning to have Robert and my mother join him. Before they were able to come, my father left his dog (whose name was Dog) in the basement of the house whenever he visited my mother and Robert in the city. During one of the visits, he left a kerosene lantern burning in the basement. Apparently, Dog knocked the lantern over and the brown, two-story house on Maple Avenue burned to the ground. Luckily, nobody was home, but the dog was lost.

My father had no insurance on the house. Once again, George