1996 was the final year we lived in the land of pretend, my sister and I. I took her side, always when she called to rant and rave about what her estranged-husband was now ‘accusing her of’ or demanding she do. In return, she made regular visits with her son, my delightful nephew who had just turned 14. I had always felt that my nephew and I shared a special connection. Where Deb and other members of the family, chose defense mechanisms of extreme silence for shutting out painful event and shielding its recurrence, my nephew and I had taken the ‘humor route’. I learned early on in my life the rule of ‘making people laugh’ with and not at us, of allowing them to think that we were always doing ‘just fine’ because people could not detect deep despair, pain or sadness in we, who were always smiling and joking. My nephew was, at 14, and for many years previous, his mother’s primary caretaker. He was for us the highlight of visits with his mother, my sister. We wanted, as did others in his life who loved him, to bring ‘normal’ and restore some part of his childhood to him. Most visits, then, meant a separation with my husband the designated fun-time guy who took on the care of the children. I was assigned the entertaining of my sister and then, of course, there were times, events, meals and outings where we all went together.
There were weekend trips, where my nephew had a school holiday or two and my sister still, working, left him here after HER visit. I went to extremes in entertaining my nephew and all the kids, but in particular, knowing that my nephew fixed most of his meals for himself (and many for his mother as well), I waited on him, because I wanted to give him ‘that’ service. I think now, on a deeper level, convinced as I was by the words of my husband and good friends who saw no HD signs in me and proclaimed that I had been ‘spared the disease’, that I was trying to envelope my nephew under that same cloud or protection. We, separated by a generation, shared now the 50/50 risk but we shared so many personality traits that surely he and I were both ‘spared’.
My sister had a very difficult year in 1996. She was being given more and more ‘personal leave’ time from work and hearing more and more truths about herself. My brother-in-law bore the brunt of everything, as he was the one to first take her distress calls, to speak with her employers and to, finally, get her to take her neurologist’s advice and ‘test’. I fielded calls many calls from her, some quite pleasant as she was home and enjoying a morning television show, while others, perhaps the majority came in the late evening and were filled with rage and distress.
I armed myself well for these call, from my sister primarily but my brother-in-law who was desperately seeking his own source of held and support. I was working part-time and raising my infant grandson, taking care of my other children (who were not problem free, but I will not stray off topic). My husband was gone during the week, working out of town and staying near his job so he could put in the maximum hours of overtime. Even if I had wanted to race down and help my sister (which in this black heart of mine, I did not), the logistics of my life prevailed. Still, I could not help but feel after my sister went for her pre-testing appointment where her husband did all of the talking (she hated everything he had to say) and where she denied, before, during and after, that she had Huntington’s Disease. Three weeks later, she returned for her results and when she called, though she spoke only of having the stomach flu that day and having to stop during the drive several times to vomit, she did impart the information that she had tested ‘positive’. Just as I was working to formulate the right words in my head (something I did often with my sister these first two years of “At-Risk” for me), she changed topic as she also so often did during our conversations. “Oh...I don’t know...I’m looking at my cat now and...That makes me feel better.”
My sister wanted to go back to the Lake House up near Yosemite this summer. I stalled on the idea and was supported by my husband who could see that just her weekend visits sent me into an alcoholic/tranquilizer fueled frenzy to numb the anxiety I felt before and during. I called too late to get the house we had rented the year before and I did not bother to check on others that might be available. Instead, I talked my husband into helping me make good on a promise from the previous Christmas that we would go to Disneyland. Deb was still working at this point and could not get the time off, but she did give permission for her son to go with us.
The stop at Deb’s apartment was an awakening for me. I had visited many times before in the past, her old apartment, and she had always kept it neat and clean. It had been some time since my last visit however, because I was stunned by what I saw. Her living room floor was covered with piece of paper, a scattering of unopened mail, note she had written herself and other clutter. Her kitchen, when she moved us out there in order to offer beverages, was an incredible mess, with dirty dishes everywhere, filling the sink, covering the countertops, everywhere. I went into the bathroom where her cat’s litter box was located (its smell permeated the entire apartment) and noticed that it was not only full, but her cat was doing his eliminations outside the box, off the sides and even the wall behind.
I noticed another, far more disconcerting thing during that brief visit. At my house and during our ‘field trip’ outings or on our vacation the previous year, we had both smoked outdoors. Cigarettes were put out on safe cement or buried into the dry ground below. Deb smoked inside her home, her ashtray too full it would have seemed to hold another butt, but she lit one after another, often leaving the first cigarette still burning while beginning a new one. I watched in suspense as her ashes grew on those cigarettes and how she missed the overflowing container for me them as often as she did not. Later, we would implore my nephew to watch his mother’s smoking, as it was an extreme fire hazard. Not that my nephew needed more responsibilities, but it was his life as well as hers at stake here.
The Disneyland vacation stands out for one other reason, as a stabbing memory in my autobiographical tellings here. I felt bad that Deb couldn’t join us (okay, I felt bad that in reality I was relieved), so I purchased a newly released VHS movie and wrapped it as a gift for her. I felt proud of my gift and certain it would bring her some measure of joy, as she did love presents. I hinted and hinted and finally her son had to order her to open my gift. Deb did and while I talked a blue streak about how good the movie was and how I thought she would like it, she simply set it aside.
I played in character when I talked up a trip the Mexico with my sister. Her main complaint that summer was that she was not going on a vacation and deserved to do so. I told her all about my trips there and about a favorite Puerto Valletta Hotel where I had stayed twice. We spoke of this often, whenever she was down and it was my way of raising her spirits, diverting her from the ‘bad’ in her life. As I spoke I truly believed my intent to go to Mexico with her. This would later come back to haunt me, as do, as have so many of the promises I have made throughout my life
Life was a ticking clock for me during my second ‘At-Risk’ year. I was doing the math in my head, constantly. The best equations had to do with estimating my date of HD symptom onset for my sister, and then that of my father comparing the two and coming up with a sum that put me ten years at least beyond both. The darker counting had to do with those quiet but crippling that I was already and had been symptomatic for a time period. My sister was three years older and thus, I might very well be where she is ’now’, in three years. I clung mainly to the 1995 summer vacation when my sister’s symptoms were so pronounced as to be undeniable. She was 41 at the time. And, in September of 1996, I would be 40. Math, never having been my strong suit, fell by the wayside, as I say this as reason to celebrate and proclaimed, “One more year,” as my birthday approached, “One more year, without symptoms and I am free”.
I also wanted to celebrate life, to demonstrate once again that I was healthy and ’normal’. I booked a white water rafting trip for my birthday. A group including my children, husband and a family friend, joined us for what I considered a daring adventure, one more piece of evidence to balance the scales of risk in my favor.