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Within five years, I was the mother of four adorable children; two boys and two girls. Besides the busy times brought on by motherhood, I helped Bill in the business. We were occupied in building a trailer court in upstate New York, and that means we did all the physical labor. One time we laid sewer pipe during a snow storm and ended up laughing with a foot of snow on our backs from bending over digging. As hard as it was, we didn’t mind; it was a labor of togetherness.

As the years marched on, the children grew and my family moved to Virginia Beach, VA. We decided to follow suit, selling the business and moving there to my mother’s trailer court. The area’s work force was either the navy or Norfolk Southern Railroad and since Bill no longer wanted to be a navy man, he donned a railroad conductor’s hat and began his third and final career. Then in 1984, he fell from the top of a moving railroad car and lost both legs.

Bill had always been a heavy drinker and his time in the hospital was rough. He was in the trauma unit for three months and on the regular floor for another month. After he came home, strange things would happen; his hands would fly all over and he had trouble sitting on the commode; he would yell out in the middle night. His behavior got uglier every day. After thirty five years of marriage, it seemed I couldn’t please him in any way. At first I thought it was the loss of his legs, and the withdrawal from all the medication he had been receiving. At that point, he was so violent, and his behavior so increasingly weird, I had him committed. This man, whom I had loved most of my life, seemed to be gone and a monster had taken his place.

After the doctor at the hospital saw Bill bite the nurse, he suggested that perhaps Bill had Huntington’s Disease. I had never heard of that before in his family nor had his mother who was still going strong at eighty-five; he knew of no one in her family with this disease. Bill’s father had died at age thirty-five in a motorcycle accident, his grandmother died of alcoholism and his great-grandmother committed suicide. Still, I said to myself, I was not going to believe Huntington’s was the problem until I could see some proof.

When the doctors prescribed Haldol and Prozac and he changed overnight. Yes, it did dope him in the beginning, but that was a relief for me. He stayed on that dosage and as time went by, he got used to it and seemed somewhat normal. The drugs arrested his movements; that was even more important than with most HD sufferers because he had no legs.

Eventually, our third child began having what seemed liked HD symptoms. It took three years before she was able to seek help at Johns Hopkins. The DNA test was performed on her and on our second child, who had by that time also become symptomatic. Following their positive results, we sent Bill’s blood in and of course, at long last, the diagnosis became a reality. All three of them had HD.

I went to the library for information, but there was very little available. Until my husband died in 1995, I just stumbled through caring for him the best I knew. It was hard because by then we had a house and twelve acres; I had to deal with well water and pumps and lawn mowers that didn’t start. And, become an auto mechanic. It was necessary because we lived in a rural area. We even had a wood stove to help heat the house, and I had the cutest little chain saw. I would take the cutting deck off the lawn and garden tractor, and go into the woods dragging down a small fallen tree, which I then and cut up. My husband would wheel his chair up to the window and watch with a smile on his face. He didn’t talk much, and I often wondered what was going on behind those large brown eyes of his.

After the accident, I took over the household bill paying. It was then I noticed numerous long distance phone calls to upstate New York. That was the beginning of finding out that my husband had an affair while we were living in upstate New York. He was now phoning this woman after many years of no contact with her. The affair was back in 1956 and I didn’t find out until thirty years later; all those years. To say I was crushed and angry is an understatement. This was not the way it was supposed to be. My husband was my Prince Charming, so where was our happily ever after? Instead of living a storybook life, I was trapped in a marriage to a legless monster who supposedly had some disease I knew nothing about. I later found out that not only had he had the affair, but a child had been born from this union and had the possibility of having the disease. And if she had Huntington’s, any of her children had a fifty percent chance of getting it, too. How could I ever begin to have whatever it would take to be his caregiver and forgive him?

Helmut Thielicke, a German pastor who endured horrors at the hands of the Nazi Third Reich, is quoted as saying, "Forgiveness does not mean that we will forget. No, we remember, but in forgiving we no longer use the memory against others, or ourselves. Forgiveness is not pretending that the offense did not really matter. It did matter and it does matter, and there is no use pretending otherwise. The offense is real, but when we forgive, the offense no longer controls our behavior or emotions. Forgiveness is not acting as if things are just the same as before the offense. We face the fact that things will never again be the same, but, by the grace of God they can be better... "

I now know that inappropriate sexual behavior is often one of the hallmarks of Huntington’s Disease. Bill had been symptomatic for years and his behavior was really a product of the disease, not a desire to destroy our marriage. I realized the person that was hurt the worse by my lack of forgiveness was me; I would be eaten inside like a cancer and turn into a bitter hateful woman. Even if Bill didn’t think he needed me, my children did.

I was dealing with his infidelity and caring for him, all the while knowing what my children would be facing. It was a painful time, but somehow God knew what I needed to get me through that period of my life. I am a painter and a lover of art. Looking back, my best work was produced while under tremendous stress. When my husband died, I focused on my daughter. She had two children by this time, and though the oldest was on her own, her young son still needed care. My son-in-law was long gone, so I decided to take the money that I had and build an addition to my home. This addition would be a place for my HD positive son, daughter and at-risk grandson. It was a huge expense, but at this point these two adult children of mine had no one but me. The Lord had entrusted them to me; like this is my destiny to care for them.

Living in a situation like this is not easy. At sixty-four years of age, I am trying to raise a fifteen year old while dealing with all sorts of challenges, including suicide attempts, alcoholism, and mood swings. My plate is full, but if the truth be known, I have the privilege of knowing my children more deeply than most parents. We share a lot, living in the same house.

Bill’s last gift to us was the donation of his brain to Johns Hopkins research. It might be his tissue that breaks through a cure for us all. Life rarely plays out the way we anticipate, but it does play out the way God wants it to. And that’s all that really matters.

Used with permission; Faces of Huntington's by Carmen Leal-Pock
© 1998 Essence Publishing—All rights reserved.