When I discovered that my father had Huntingtons disease, it was the defining moment of my life. It was also the first time I saw my mother cry.
Theres something wrong with your father, she sobbed. Hes having problems at work. The doctor thinks he has Huntingtons disease, but he has to finish some tests. The doctor thinks his father had the disease.
What can we do? I asked.
There is no treatment, she said.
My family was being violated by a terrible disorder that slowly wears away at the body and mind. Huntingtons is a disease that isnt limited to a single person, but affects generation after generation.
My grandfather died in 1980 at the age of sixty-nine. He ended up in a state hospital for the last months of his life.
The doctor saw Huntingtons symptoms in my fathera difficult time learning, moving while sleeping, clumsinessand made a clinical diagnosis. There was no blood test for the disease at that time. He said the disease was slow but steady. My father would become disabled and die in ten to twenty-five years.
He told my brother and me that we had a fifty-fifty chance of also carrying the Huntingtons gene.
I made the decision to be tested for the Huntingtons gene. Because Huntingtons doesnt have a cure or treatment, there arent many people who take the test, but I decided I should. I guess I just wanted to know my future, my fate.
I remember the shock of finding out the results. The test came back positive.
It was a deep, wounding blow, and instead of peace, I was thrown into madness.
On that horrible day in Atlanta, I sat outside the testing offices and realized that my life would be cut short. My genes promised death and disability. I was twenty-five years old and had a terminal diagnosis.
I thought of my father living at the Veterans Administration Hospital, who was declining, and my uncle and grandfather who had died of the disease. I thought of my grandfathers mother, who ended up in a mental institution. I spent a lot of time reading about the philosophy of the absurd. Nothing made sense.
My mother was destroyed by my test results. She had always protected us and now she could not. Huntingtons is not something you can be protected from. In time, my body would begin to rebel. Control would disappear. Huntingtons disease used to be called Huntingtons chorea because the patients are always moving, even when sitting. They look like they are dancing.
My sharp mind would become dull and I would lose the ability to communicate. I had seen my father lose so muchthe most basic things became impossible, and a man was reduced to a child. This is my legacy and my inheritance. It is something that will happen with the certainty of the sunrise.
Now, it is a money game. If money can be raised for the basic research that drug companies wont fund, maybe a cure can be found for Huntingtons and other untreatable diseases. That is my dream.
Ronald Hartley Jr. 96T received his masters of divinity at the Candler School of Theology, and now lives in Conshohocken, Pennsylvania.