As I sat in Jason?s office one day, he turned his chair and faced me.
?Mom, I have Huntington?s Disease,? he said.
I struggled to remain calm, but my head was screaming. This could not be happening. Not my children! I tried to swallow the lump in my throat and was determined that this was one time that I would not cry. I told Jason that I had not seen symptoms of HD. And it was true, but now I realized that his behavior had been typical of the disease. He said that he knew that he was short tempered and that he was lethargic. He said that he had a twitching that he was unable to control and that it must be Huntington?s. I was unable to think and yet, a thousand thoughts shot through my head. If he had HD, then it was a certainty that Tony did. Since Tony had never been tested, I was able to hold on to the hope that he was negative. I would have to finally give up the denial and accept it if Jason were HD positive. The possibility of Jason?s having the disease was almost more than I could bear. We talked for a while and I tried to reassure him that I had not seen the symptoms, all the while, realizing that he might be right. For a mother, the greatest pain of all is for one of her babies, regardless of his age, to be subjected to the trials of this damnable monster. Unwanted thoughts popped into my head. Jason could live with us and I could care for both of them. But I pushed the thoughts away and refused to believe that it was true.
We had a second conversation about the possibility a few days later. He was so certain that he had Huntington?s, but I encouraged him to have the HD predictive test. He had nothing to lose, and if he were wrong, he had a lot to gain. He had insurance in place, so that was not an issue. He argued that it was a waste of money. He was sure, even without the test. But finally he agreed and an appointment was made for the test. Often long counseling sessions are provided for those at risk who are considering having the predictive test. That is most likely the best way to approach it, but in Jason?s case, no counseling was provided. He had the simple blood test and waited for the results.
On Sunday a few weeks later, I was cooking a turkey for dinner. Eric had met and was dating a young lawyer, Leslie, who was the director of the law clinic at a local private university in Tulsa. Leslie had been welcomed into our family and offered a new sparkle. She was kind and considerate, and understanding of the hours that Eric gave to our company. They seemed well matched and she was later to become his wife; she was always included in any family activities. This was no particular dinner celebration, just a simple dinner for the five of us. After the turkey was in the oven, I sat in the greenhouse, relaxing with a book. The phone rang. It was Tony calling from the office.
?Jason?s doctor called,? he said. That was strange, I thought. It was Sunday afternoon, an unusual time for the doctor to call. I expected Tony to continue that he wanted to meet with Jason.
?He had the results of Jason?s test.?
That seemed even stranger that he would discuss that with Tony. It seemed an eternity for the story to finally be told.
?He is negative,? Tony said with little emotion.
?Negative? Are you sure?? I could hardly believe what I was hearing. I had held on to the belief that he was negative, yet now that I heard it, I could hardly believe it. Tony assured me that Dr. Wiseman had said he was negative for the mutated gene. He said the conversation had been short. Dr. Wiseman had asked for Jason and Tony had explained that Jason was not there. He then asked if Tony were Jason?s father and when told that he was, preceded to give him the results of the test. He said that usually he was not as hasty to give the findings, but that he knew Jason and his family were anxious. He told Tony that if Jason planned to have children, that they, too, would be free of the gene. It was a short conversation, but contained life changing information.
?You need to call Jason and tell him,? Tony said. There was an urgency to give Jason the news. We had all waited patiently for the results of the test, and now it seemed that we could not tell him soon enough. We felt the same urgency that Dr. Wiseman had felt. The news was just too good to hold back. I hung up the phone, took a deep breath and dialed Jason?s cell phone number.
?Where are you? Are you driving? I have something to tell you,? I said.
?I?m shopping,? he sounded confused at the manner of the questions. ?I?m in a department store, standing by a rack of trousers.? I told him about the doctor?s conversation with Tony.
?You?re negative!? Jason started to laugh, louder and louder.
?Everyone?s staring at me and I don?t care,? he finally exclaimed through the laughter. The image of Jason standing by a rack of trousers, laughing with everyone staring at him is one of my favorite memories. It was the most joyous occasion.
I called Eric to give him the news and he was delighted for Jason. I cautioned him that his risk was not increased because his brother was negative.
?Yes, I know, Mom,? he said. ?It is still 50/50.? But his still being at risk did not erase the relief that he felt for his brother.
Leslie and Eric arrived for dinner first, and somehow they had managed to get a bottle of Champaign to bring with them even though it was Sunday and the liquor stores were closed. They were so elated and we put the bottle on ice; this would be a celebration dinner. Tony and Jason arrived at the same time. Tony congratulated Jason and shock his hand, but Jason was not the laughing, ecstatic son that I had talked to earlier in the clothing store. He was quiet, almost subdued. He took the Champaign out of the ice bucket and replaced it with wine. This was curious. I followed him into the kitchen.
?What is wrong? We are so happy for you and you are so quiet,? I asked. Jason explained, ?Tony must be feeling awful that he has the disease and that he has possibly passed it on to Eric and me.? Jason was considering Tony?s feelings. And I stood in the kitchen, hugging my son, for his compassion and for the joy of knowing that he was negative. And for the first time the tears over Huntington?s were tears of joy.
Our electronics company had just completed an 18 month long project for Phillips in the North Sea. To meet the schedule our crew had worked 12 to 18 hour days, seven days a week. Jason dislocated his shoulder on the oil rig and had to be flown by helicopter to Stavanger, Norway for medical assistance. He dislocated it a second time before the end of the project. Jason is an embedded systems programmer and, in this case, the computer chips that he programmed kept the divers who would be working on the ocean floor safe. If his programs failed, divers would die. That is a lot of stress.
Jason began to recover from the rigors of the Phillips project and has become normal again. The stress of the long 18 months had battered him, and his body had reacted with what he thought was Huntington?s Disease. It was stress.