Never give up hoping….

“When my second child was born, my body jerked and twisted for three days. I felt a sense of dread overcome the joy of our healthy newborn. The movement lessened to twitches and grimaces, which I felt I was successfully masking. I watched in certainty as my father developed Huntington disease. I prayed for, “Just five more good years, please Lord,” and made sure we would have no more children. My handwriting deteriorated, I refused to eat certain foods in public for fear of disgracing myself. I was so afraid of losing control, I would never let myself relax. When I would make an error at work, I wondered, “How long will I be able to continue?” I sewed Halloween costumes, read stories out loud, and baked cookies because I wanted my children to remember their mother for something. My second child was now twelve years old.

In autumn of 1993, my youngest sister was sure she was developing symptoms and inquired about predictive testing. She could go no further until we had an immediate member of our family confirmed. She was willing to try matrimony again, but would not if she had HD. How to have Dad confirmed? His own doctor was no help. His assessment of a little Parkinson’s, or perhaps a bit of forgetfulness was more than exasperating. I engineered a referral to a Movement Disorder Clinic, only to discover that the specialist was proficient in Alzheimer’s Disease! We tried again. I had told my father that I wanted to have predictive testing and would he submit to an examination and blood test? He asked why the doctor wouldn’t believe him? Anyway, his blood had been stored in Vancouver for fifteen years! My sister tested negative and we rejoiced at her wedding in the summer of 1994. I admired her resolve and decided to go ahead with predictive testing for myself. In the meantime, my father was visiting the Huntington’s clinic monthly and was testing a trial drug. He had another minor car accident, and was warned by the police, but continued to drive. The doctor at the clinic gave him the ultimatum to stop driving before “someone” rather than “something” was his victim. He had been driving for 55 years, but the doctor’s reply, “Yes, but you haven’t had Huntington’s for that long,” silenced him. I felt there were some days when I should not be driving and worried that I would be at fault in an accident.

Suddenly, after 30 years of watching Huntington’s affect our family, I HAD to know. My children had watched their grandfather and would remember the staggering, the difficulty at mealtime, the difficult speech. They looked at me, and I wondered at what stage was I, and how long would it be?

My husband and I discussed all recent developments… the hope of treatment and cure. My children would be able to choose for the next generation, and Huntington’s could be obsolete in their generation. I would support their decision. I felt if I had to be alive on life support systems, and there was no quality of life, I would not want to continue. Even if there was a cure or new treatment the next day, I would have made a decision based on all the information available at the time. We had been through this process twelve years ago before I decided not to risk any more children. I was in good health, working part time, volunteering in my church and community, and felt that I had indeed been given, “Five more good years, thank you, Lord.” I wanted my husband to divorce me when I was in institutional care so that he could carry on with life, but he refused to discuss that. Only my husband and two sisters knew I was undergoing testing. I felt my having HD was going to be harder for the people around me; I would be coping well in my own world, thank you.

We were unsure of our finances but we had survived business catastrophes, job loss, career changes and moving halfway across Canada twice. We would cope as we had before. My husband had life and disability insurance, the mortgage on the house would be paid in a few years. The children were older than I was when my mother died, and I remembered that throughout my whole life, God has surrounded me with wonderful Christians that enrich my life. There wasn’t anything else we couldn’t handle together with faith. I was ready to have the test results.

“Only my husband and two sisters knew I was undergoing testing. I felt my having HD was going to be harder for the people around me; I would be coping well in my own world, thank you.”

I wasn’t ready for my father to take his own life. I never believed he could consider death as an option. For him there wouldn’t be any tomorrows to go fishing or visit his family or enjoy apple cobbler. He did not want to be dependent. Many years ago he told me that he would never leave or sell his house, “They will have to carry me out.” Those words took on new significance. During my counselling for predictive testing I realized that my father had reached a point of no return. He was never going to get any better, and he made his decision. Deep inside of me, I felt responsible for his choice. I had been selfish wanting to know about HD for myself and inconsiderate of my father, who knew and was still trying to live a normal life. In everything he was optimistic, but I could not see past the disease. He knew what was ahead for him, and for us, and made his decision. I knew it could never be my decision. My 12 year old child was worried that I would do the same.

A second sister was now undergoing predictive testing some distance from me. She was having panic attacks in the shower and hyperventilating. I approached my results appointment with finality — now I would know my stage of Huntington’s. If I had incurable cancer I would want to know. My cup had always been half empty, now I became aware that it was approaching overflowing! During the writing of this letter I have gone through the whole process again and I still wouldn’t change my decision. Counselling was the most important part of this process. Visiting two hospitals for my appointments and seeing everyone else’s problems reminded me of all my blessings. “Life is uncertain, eat dessert first!” seems a flippant remark, but I ALWAYS check the dessert menu before ordering! My right knee always tells me what the weatherman didn’t predict, and my children don’t hesitate to tell me that they REALLY did learn everything in kindergarten. Life is uncertain, but I will live it one day at a time.

One Christmas after my mother died, there was a very large box beside the tree with my name on it. On Christmas Day I opened it and discovered a nightgown inside. My face must have registered disappointment because the watch I coveted was not inside. I moved to open another gift. Daddy was astounded that I did not empty the box! So I dug a little deeper and found a small package. It was a velvet watch box! Shrieks of joy turned silent when I found it contained a small card that said, “Better luck next time!” Another disappointment! “Don’t give up!” my father urged me. Another package was a dressing gown to match the nightgown. I felt that was a mean trick for Christmas, especially when a small bottle filled with tacks was labelled “Official Noisemaker.” I really had emptied the box. “Never give up hoping!” Daddy was emphatic. Among the crumpled newspapers used was a crumpled ball of holiday wrap. I smoothed it out and there was my watch! In those 10 minutes I had hit all the highs and lows of my 15 years. Daddy kept urging me on, “Never give up hoping!”

Children don’t always remember what their parents tell them. I tried to forget some of the things my father said as his HD progressed. “Never give up hope!” came flashing back to me as I was waiting for my results of predictive testing. For me there was no “downside.” I was already convinced that I had passed the HD gene on to my children. They would be the ones to know there was treatment and hopefully a cure. Watching them and wondering … if? More often, the question was “When?”

I do not have Huntington disease. Six weeks later my sister phoned to tell me joyously we would grow old together. She also tested negative; we three sisters had all tested negative! Our father gave us all his love. I wish he could have known he gave us life.”