Living Under a Mordern Day Curse
by Jim Gayle
I live under a modern-day curse. It is not a spell cast by an evil person. It is the curse caused by a genetic disorder called Huntington’s Disease (HD). This genetic disorder is passed from parent to child with a fifty-fifty chance of the child inheriting the HD gene.
Huntington’s is a progressive condition which eventually ends in death. It affects the brain and slowly erodes a person’s ability to function normally. Initially the ability to focus and to complete tasks is affected. As the disease progresses, a person with Huntington’s experiences severe mood swings and, later, constant uncontrolled movements of the head and limbs. Over a period of years, the individual’s speech gradually slows and becomes slurred. Finally, the person affected by HD becomes totally disabled and must be cared for as life slowly ends. This last stage may take from a few months to several years.
My father died in March of 1941 after a three-year battle with cancer. He left behind my mother and five small children. I am the third of five. At the time of my father’s death, I was just a few months from my sixth birthday. My mother was deeply affected by my father’s long struggle with cancer and by his ultimate death. When he died, she lost all ability to focus on her role as a mother. I cannot remember eating a meal my mother prepared or enjoying the kind of care a normal parent gives to her children. Family members attributed my mother’s strange behavior to the birth of my younger sister and brother three years prior to my father’s death and to the trauma of his extended illness and death.
Shortly after my father’s death, my oldest sister and brother went to live with relatives. This left me to be the “man of the house” at age seven. The only income we had was a small welfare check each month. Almost all our clothes were given to us by neighbors. Sometimes children at school would laugh at the clothes I wore and say, “That used to me mine.” Many days we only had bread and milk to eat. I often experienced true hunger.
As the years passed, my mother’s condition grew worse. She spent long periods of time just sitting and listening to the radio without noticing us or doing any housework. Our home was always cluttered and dirty. As I grew older, I became very resentful and rebellious. I seldom stayed at home during the day and I spent lots of time with undisciplined boys. Occasionally mother would go to church and make us attend with her. I was always embarrassed by our clothes and by my mother’s strange uncontrolled movements. I worried that people thought our family was not only poor but also a blight to the community. I felt rejected by society.
One afternoon when I was thirteen, two men came to our house and took my mother away against her will. I had stayed home from school that day so I witnessed these men, who identified themselves as plain clothes police officers, forcing my mother to go with them. They had an order from the court saying mother was mentally unbalanced and must be hospitalized. We found out later that evening that our neighbors had called the police and requested that my mother be taken away. I was enraged and anger became a constant in my life. I felt as though I had been cursed. Unbeknownst to us, my mother was suffering from Huntington’s Disease.
In the following months, my younger sister and brother were sent to an orphanage. The people there refused to take me. They said I was too old. Mother was released from government custody into the care of relatives. I too went to live with first one relative and then another, but I found no permanent home. I was so bitter and angry that I had a hard time getting along with anyone.
In June 1951, I faced one of the most difficult experiences of my life. Mother’s condition got progressively worse and a decision was made to put her in the state mental hospital. I accompanied her and an aunt to the hospital and watched as nurses took her from the waiting room, again forcing her against her will. The look of fear on my mother’s face and the sound of the big steel doors closing as they took her away is indelibly imprinted in my memory. It was as if someone had shattered my world. I felt anger, sorrow, and embarrassment because I could do nothing to help my mother. She was locked away with “crazy people” rather than being in a hospital. I was never able to visit her again. My mother lived thirteen more months, then died in the state hospital.
This experience left me deeply wounded. I decided I would not attend high school that year. My uncle, with whom I was living, insisted that if I was going to live with him, I must go to school. I decided to leave and go out on my own. I did not know where I would go or what I would do. It mattered little to me. The very evening I had prepared to go a telegram came from a boy’s ranch inviting me to live there. I had already packed my belongings and I knew I had nothing to lose by giving this a try.
The boy’s ranch provided a new start to my life. I was the oldest boy at the ranch and was given the responsibility of being a leader and example to the younger boys. Our house parents were strict but fair. Their love for God, us boys, and their commitment to their work was evident. They made a great and lasting impact on my life by pointing me to God.
The next two years were a turning point for me. I had plenty to eat and nice clothes to wear. I found respect and love. School was neither a burden nor an embarrassment. As I pondered all the changes I was experiencing from past sadness and difficulties, I realized that I had been rescued. I welcomed God into my life and committed myself to serve Him in whatever way He led me.
College had never been a part of my life’s plan. However, the adults at the ranch said that God could use my life better if I got a college education. Following high school graduation I enrolled in Baylor University. It was my first conscious big step of faith. There were no guarantees I would have the finances to complete school. I was totally trusting God to provide.
During my sophomore year, I received news that three of mother’s sisters had been diagnosed with Huntington’s Disease. Even though the official cause of mother’s death was tuberculosis, the early symptoms indicated that she too was a likely victim of HD. That also meant that I was at risk of having HD. I was frightened about my future. At times these thoughts hung like a dark cloud over me. I realized there was nothing I could do to change what life would bring. I knew I must trust God for my life and future.
During my last year of college, I met my future wife, Margaret. It was very difficult to tell her that Huntington’s Disease ran in my family. God gave her courage and a willingness to face that uncertain future with me. She has been God’s great gift to me. Together we discussed the matter of having children. Would it be worth the risk to have children who would face this terrible disease? In spite of our worries, God gave us three wonderful, healthy sons.
For the next twenty years we busied ourselves with ministries, pastoring churches and serving as missionaries in Southeast Asia with little thought of HD. Then in January 1986, while serving as missionaries in Indonesia, we received word that my youngest sister had been positively diagnosed with Huntington’s Disease. The old fears returned. Margaret and I prayed for courage and faith to face whatever the future might bring. In the summer of 1987, we returned to the US.
In 1995 my younger sister died of HD and in 2002 my younger brother also succumbed to the disease. I mourned as I watched their lives slowly wither away knowing that there is not yet a cure for this modern-day curse. Seven of eighteen cousins from my mother’s family died of HD. The goodness of the Lord has spared me from this tragic disease.
Through these years of sorrow, sadness, and uncertainty, God has taught me some very important and precious lessons. I know that suffering and sorrow are a part of this earthly life. God does not cause it but He will walk through it with you. Psalm 23:4 is a reminder of this truth. This experience has helped me to identify and feel the pain and sorrow of others who suffer. I know we must walk through life by faith and trust in God with all our hearts. God has supplied every need I had and I have trusted Him. He has taken my sorrows and given me joy and purpose. He truly has made all things work together for my good.
If I traded all the sadness I have experienced because of Huntington’s Disease for a less painful life, I would be a poorer person. God has used this modern-day curse to demonstrate His strength in my life. Through it all I have been drawn to Him and learned to trust in Him. I have truly experienced God’s mercy and love.