Being a coward has nothing to do with this

“This is about my experiences living with Huntington disease and why I do not want predictive testing.

My father had Huntington disease. I figure he started showing signs when I was 11 years old. He was diagnosed 10 years ago and has been dead for four years.

HD to me is cruel and unsympathetic to both the victim and the family, and therefore is very much a family disease in every sense of the word. It is a very difficult thing to stand by and watch a strong, independent, proud man lose everything. He lost his ability to drive, work, handle his money. He did not care how he looked, he aged rapidly, had trouble swallowing and speaking to a point, and lost his balance easily. This wrenching disease is like watching a full grown adult revert to childhood.

Before my father was diagnosed, I just thought he was a hateful, abusive man and I hated him. I often wished he was dead. I used to get so frustrated with my father because nothing I did was right or good enough in his eyes. I got to the point where I didn’t even care. You get totally lost in HD. The disease takes a front seat to everything else. HD does not get worked into your life, your life gets worked around it!

I hated school but it was a place to go where he wasn’t. My friends never knew I had a father and I never made any effort to let them know differently. I remember in Grade 9, my first year of high school, going to gym class and having bruises that I never explained — but I could see the other kids staring — I always tried to ignore it. The physical and mental abuse of the disease is absolutely unbelievable. Looking back now, if today’s laws had been in effect then, he would have been in jail.

There is one incident that happened in my early teens that I’ll never forget. My father had no concept of time, if it wasn’t for himself, and he always kept us waiting. If anyone told him to hurry up we were going to be late, he got angry and started a fight and this took even more time. One of these times, we were going to my grandparents and we got there two hours later than we could have. My grandfather asked me, “How come you people are always so late going anywhere?” I was 13 years old. How do I explain it, especially when you are told, “What happens in this house stays in this house.” People would never have believed us if we told them about my father and his ways. He was Mr. Nice Guy in front of people and a paranoid abusive person in the confines of his own home. After my father died, everyone outside the household would say what a good man he was and what a good father. Bull! How do you tell people this quiet, gentle, kind man they knew was not the same violent, abusive man you lived with.

The outside world had such a different picture of my dad, and that was great! We’ve probably made this image possible by not telling about the monster that lived in our house. We never painted the gloom and doom that lived within, on the outside walls. But let me tell you, if the inside walls could talk… People would stand back shocked to hear the tales of 10-15 years of living hell. The first 10 years of my life I scarcely remember, but the next 10 years I remember vividly being yelled at, kicked at, blamed, suspected and not trusted. Finally, a diagnosis of HD was given and I realized that all of this happened because of an illness. Now all of a sudden magically, we must forgive and forget. In the last 10 years some types of medications and help were available and this HD victim that we lived with would not accept them because he thought someone was out to get him.

While living with HD my time was not my own. When not working, the whole day was spent running with and for Dad. As his short term memory failed, much time was spent constantly repeating and explaining simple thinks over and over. As a result of this, I can be quite selfish about my time, and am very impatient when doing things. I get extremely frustrated when people interfere with what I am doing, especially on the job. While I was helping to look after my father, HD had control over the events and happenings in my life, and there was absolutely nothing I could do about this. But now I’ll be damned if I’ll allow HD to control and dictate my life today. On March 22, 1993, it was great news to hear they found the gene that causes HD. The implications of this are great, but for me predictive testing is something I really don’t want. I really don’t worry about getting HD. I also don’t want to know if or when I could develop this disease. There’s no cure for HD so why sit and wait for my hands to shake?

“On March 22, 1993, it was great news to hear they found the gene that causes HD. The implications of this are great, but for me predictive testing is something I really don’t want. I really don’t worry about getting HD.”

Because HD has no effective treatment or cure, this is one reason I do not want children. Due to this decision, I have run into two separate occasions where two different professionals made predictive testing an issue. They thought testing should be done before they would agree to my decision. Because I did not agree with this, one comment was, “Why not, are you a coward?” I was so angry I walked out of this specialist’s office. Being a coward has nothing to do with this. I’m now in control of my life, and I will decide if I want to know or not know. Maybe someday this will change, but for now I’m the one in charge of making my own decisions. My greatest fear is not HD itself, but the fact that my doctor will not know anymore about HD if I should get it than he did when my father had it.

I recently heard a most appropriate comment that sums up predictive testing in my mind, “If genetic testing becomes the basis for daily decisions, it will become a new form of prejudice.” I personally feel we cannot allow this to happen.

Years ago, I remember being so angry at my mom for going to all the places my dad frequented and informing these places that he had HD. But it really did help because in the end it made these people more understanding and patient towards him, taking some of the burden off of us and allowing him some independence. In closing, the one thing my life’s experiences have taught me is not to keep this disease quiet, because when people become more knowledgeable about illnesses, they become more sensitive.”