To Live 'As If' - My Story<br>Chapter III: Home is where the Heart Breaks

The minute we were home and unpacked from that July 1995 vacation, where I first realized that my sister almost certainly had Huntington?s Disease, I hit the phones. My sister had split off from our party at her East Bay Area home, taking her son who was to spend the following few weeks with his father. I placed my first call to his father, my brother-in law. He and my sister did not live together, for reasons best kept private, but he cared deeply for and about her, and shared custody of their son. I asked first, when I reached him by phone if that son, my nephew, was ?around? or within hearing range. I was informed that my nephew was spending the night with my other sister and his other cousins who lived nearby.

I spilled it out with blunt-force trauma, instead of leading delicately into ?the story? or asking about changes he might have noticed in my sister, I simply let go, the truth. We moved backward from there, with my explaining the disease and how I had come to conclude that my sister might have it. My brother-in-law, in turn, expressed a sort of relief as he had long been concerned about my sister and his guesses were that she might have a brain tumor (because of the motor skill disorders) or be suffering a total emotional breakdown (because of the personality/psychological/emotional changes).

He thanked me for giving him the information and I promised to do more research and obtain resources for getting help for my sister. I furiously searched the Internet, printing out medical journal articles (which I still have in hard copy) and obtaining numbers for local support groups. I did find the HDSA official site at this time and sent for all the information available (which I also still have).

The next call to my brother-in-law, his tone had lost some of its gratitude and somber shades of ?sharing?. Even though his son was staying with him, he had been bombarded by calls from my sister, nearly all in nature of distress, or containing extreme demands. My brother-in-law listened to the information I had to offer but shot down the facts I had so impressed myself with learning and understanding, about CAG counts and so forth. I did not want to move forward and I did not believe he wanted to hear about it either, forward meaning the direction in the progression of the disease as she became less and less able to function independently. My brother-in-law asked at this point why I was not concerned for myself and why I was not getting tested. I suddenly remembered my impulse offer, made on our vacation to my husband and during the first call to my bother-in-law, that I would set the precedent and get tested for HD.

I had come full-circle on the testing issue in just a few weeks? time. Actually, I knew when I made the offer to ?test? that I did not want to do it. I tried explaining this to my brother-in-law, how I felt that there was nothing to gain at this point in time, that I was healthy, had too many people depending on me and that I did not feel I could handle a positive predictive result. Secretly I had struggled hard with my emotions regarding the test. I had no exposure at this point, no contact with others who have the disease or had tested positive but were a symptomatic. There was no picture in my mind for working WITH a positive result, taking on a non-existent (to my knowledge anyway) regime of hope that could stave off the onset of symptoms. I saw only that a positive test result would define me and its knowledge and certainty within me would most certainly mean, at the least a constant, diligent watch within myself for onset symptoms. I wondered too, if the knowledge would not unbind the genetic time-bomb code and bring it forth immediately. These concerns I did not share, and thus, the reasons given to the brother-in-law during that conversation, for my not wanting to test, were not to his mind, viable or practical.

I made other phone calls after speaking with my brother-in-law and more of the mysteries of my past were unlocked. My step-father, the man who drove my father to the bus station that Christmas in 1973, expressed little surprise (but much sorrow) when I related events and my conclusions following our summer trip with my sister. He said that my father had tried to contact my mother after my last ?visit? with him, back in 1974 and that he, from his own consultation with the doctor who offered only reassurance to my sisters and myself, had learned enough about Huntington?s Disease to believe my father had it. Right after I spoke with my stepfather, he went to visit my sister. He reported back that he had observed the things I described and that not only did he believe she had HD, but he was certain she knew as well. ?Honey,? he said, ?Your sister lived in the same area several years after we moved to the East Bay, and she saw him almost every day. He went into the bank where she worked.? Indeed my sister had seen my father for two years after I last did and I recall her complaining about his coming into the bank and how embarrassing it was for her because his appearance and demeanor were that of a street bum/drunk.

More surprises awaited when I called my grandmother who had moved to Southern California at her older sister?s urging, following the death of my grandfather. Her older sister had been, for some time now, exhibiting signs of Alzheimer?s disease and my grandmother was just now coming to terms with the idea that this was what was wrong with her older sister. I stirred the pot some more, that day in early August 1995, when I told her my concerns and conclusions about my older sister. After my mother died in 1982, we had agreed my grandmother and I, to cease the secret keeping in our family. Grandma was a strong woman and she had come through so much in early 80?s; In a sixth month period, June 1981 to January 1982, she lost both her husband and then her only daughter. Though she had supported my mother through her divorce from my father, I was the one finally to tell her, of the molestations of my sisters and myself, by our father. She said she had always suspected something (just as my stepfather did when I told him), but my mother refused to say and that she was very sorry it had happened. Her attitude was the same with the news about my sister, who was expected for a visit the following week.

My grandmother told me that, despite not having a clue as to what was wrong with my father, she kept him from us. He had gone from one board and care facility to another in the area where she and my grandfather lived, but kept showing up in a Taxi in front of her house, yelling for my mother and then begging for a way to contact her. The last my grandmother heard my father had been taken to a facility in Stockton, some distance way, that was located on a big ranch.

All of this was news to me, my stepfather?s information and my grandmother?s and I had a slight gap in time to consider then, the question of who I was...or who I am. My identity had long been anchored in academic achievement, in motherhood and in my writing. I had a disdain of tests, preferred to prove my worth through work, rather than a score on an exam. This was my reason, when contemplating the predictive test for HD that I spent little time on the way I would feel on receiving a negative test. I already had testimony, from family and friends too close to be objective, that they felt I could not possibly ?have? the disease. I also felt that I could present myself, work myself past the age of its possibility and therefore achieve a ?negative?.

This is only a part of me, but a large part, the competitive TC. It began in childhood, three sisters vying for position and love in a family, with myself, the middle on, having to work harder for lack of a defined ?oldest? or ?baby? role. I went to college, lots of college and claimed the title in higher education (an M.A., which I am currently following with certification classes toward a teaching credential in Special Education). I had more children; my younger sister had a boy and a girl, two and my older sister, Deb, had just the one son. I had three. I focused myself, after receiving my M.A. in History, on my longtime goal of writing for publication. I wrote articles mainly and was published in parenting journals (and a few National Magazines). Most recently, ahead of the July 1995 vacation, I had finished two books, one a novel and the other a compilation of humorous, sometimes poignant articles on daily living. I was working with an editor who had private financing for the anthology book and a plan to market privately, then sell to a larger publisher and pay off investors with (hopefully) big dividends. In fact, I took the manuscripts with the editor?s markings, to the Lake house vacation with me, making final adjustments myself and sending off the entire package from the small town post office in the little village.

Who was I, then? In the summer of 1995 I could not be the crowning success story of our family. My sister, Deb, who had worked hard all her life, been a great mom to her son and struggled for a relationship, for happiness in her own life (things that were robbed from her by the abuse from my father). I felt ashamed and a few months after the walls came tumbling down on this house of cards, I called my editor and asked her to withdraw my manuscript from publication (the novel needed major work and was being secondarily considered, so I had no need to ask for its retrieval). I was going, for once and for all, quit competing with my sister.

My life, maybe always was, but has been since 1995 definitely been a series of calamitous event, one urgent situation being eclipsed by a next. On August 23, 1995, my very immature, totally irresponsible, 17-year-old daughter gave birth to a son. In some ways, I am sure, I embraced this more ?benign? situation, told myself that the concerns imposed here filled my plate to overflowing and so, even though my nephew was back, staying the remainder of the summer with us, and my sister visited every weekend, I could place Huntington?s Disease, her ongoing battle with it and my possible upcoming one, on the proverbial back burner.