To Live 'As If' - My Story<br>Chapter V: The First Year is the Hardest

If you have not gathered by now, dear readers, the fact that I am so far from saintly (as I have been depicted in my other writings about my sister?s battle with HD), I suppose this next installment of my story, the first year that I lived with HD, will strip me naked and expose the real ?me?.

Toward the end of 1995, we were aligning, taking positions within the immediate family, where my sister was concerned. With three children, plus one grandchild in my care, my position carried weight, I felt. I also had started a part-time job at a video store because I loved movies and loved working in the public...well, loved being able to use the ironclad excuse of a work schedule for not running down to tend to my sister?s emergency phone calls of distress. My younger son and daughter and I auditioned in October for a local production of ?A Christmas Carol.?. The children were cast as ?townspeople? and used in the chorus, but I got a speaking role. We were busy. My younger sister was going through a long overdue divorce from her husband of 17 years and there was big drama in their uncoupling, so she also had her own anchors. This left the man who did the most for my sister, her estranged husband and father of her son.

Back in July, our exchanges were most pleasant and cordial. My brother-in-law, in spite of the one time he rather forcefully injected his opinion on me that I should be tested for HD, was grateful for my help, my concern, my observations and my willingness to be a ?sounding board?. This dynamic began to shift, gradually at first, when there were long lapses in our communications only to be broken by calls of an emergency or crisis nature regarding Deb. My brother-in-law began to ask for more, not just from me but from our other sister. He alone (told you I was no Saint) had been the one to mention HD and the fact that she might have it, and he alone bore the brunt of her extreme anger, right after our summer trip.

I must expound here on my cowardice. When my brother-in-law gave my sister ?the news? that she might have HD, she cited me as the source of his information. I received a very angry, nasty phone call from her, where she yelled non-stop for a good twenty minutes about my talking behind her back and ?How dare you mention...that...that...disease..?. I backpedaled liked crazy that conversation, saying that I thought I might have the disease and wanted to be tested and had only told her husband, about this and that she might be at-risk as well. She accepted this but only (as I was to find out, over and over, later) because she felt more antagonism toward her husband, who always bore the major responsibility for her care, which meant setting limits for her which she did not like.

My sister had worked for the same bank for 20 years and had for a long time complained at being passed over for supervisor or managerial positions. The reasons give ?back then? seemed valid to me. She was non-assertive, non-confrontational and anything but a leader. This was HER personality. With the kick of the Huntington?s gene switch, she vocalized, to me and to others at her work, her right to promote in her job. She was given, instead of supervisor duties, work in the commercial/merchant transaction department. Through the early 90?s her annual reviews were filled with increasingly more critical comment, and in 1995 she was sent to another department at the bank, a demotion, but she tried to make light of it. She was back where she had started, checking signatures on checks. She liked the fact that most of her co-workers were Latino women who took her into their hearts and thought her attempt to learn Spanish, her small gifts to them were endearing.

My brother-in-law and I were both worried, seeing what Deb could not. The bank was not firing her, but she was hardly seemed capable these days of the lower-level tasks now assigned her. She called me, very distraught, in November, to say that she did not have the money to pay her car insurance (again, those bells go off -- WHY was I worried about keeping her on the road and driving?). I offered to give her the money for it, but when my check hadn?t arrived (she had waited until the bill was past due), I called my grandmother who sent the money.

My brother-in-law demanded that someone confront Deb with the truth and make her believe it. I had placated him...or so I thought...for months with my recitations of facts I?d gleamed from medical journals and with numbers for support groups, names of resource materials and the promise, since I thought so highly of myself while trying to prove I did NOT have HD, that I would find the cure for the disease myself. No matter. My brother-in-law was dealing with so much more than I could ever have, with phone calls from my sister, in the middle of the night, where she hysterically cried about how her son was not doing what he should around the house. My nephew was 14 at the time and in trouble for not doing laundry when my sister was in need of clean clothing for the next day, even though she had not mentioned this need ahead of her tantrum at finding none

My brother-in-law felt that, even though we had all mentioned Huntington?s Disease at one, two, three, four times or another, that my younger sister (who lived just two blocks away from Deb), and I, join forced with him and do an HD ?intervention?. I could not see this working, but was also very sympathetic toward my brother-in-law?s concerns and the efforts he had already made and..secretly..To the bad guy I had allowed him to become when I did not back his concerns and claims where my sister was concerned. My conscience kicked in and so did my impulsive big mouth. My brother-in-law had done too much already and my sister was unlikely to be receptive to his ?ganging up? on her with her sisters singing ?back up?, telling her that she needed to get tested, find out if she had HD and if she did, or did not, get treatment for whatever was wrong. I told my brother-in-law that, since my other sister who had a restraining order out for her gun toting idiot ex-husband, was busy and that he, himself, had also done more than his share. I...yes. I would tell my sister she needed to see a doctor (at least), test (at most), find out what?s wrong and start treatment. Only, when I told my sister two months later it came out like this: ?You should go ahead and get the test...or at least see a doctor about.....you know...just to prove her husband wrong. * We were never allowed to say the words ?Huntington?s Disease? to my sister.

The curtain closed on the Huntington?s ?stage?, as the holidays descended upon us. My sister?s birthday, first...she always loved birthdays and this year was more aware than ever, ensuring that I sent a card, had presents when she came and a cake. There was Thanksgiving and my son?s birthday a few days after. Deb was here and with us. We did our traditional Christmas shopping, the day after Thanksgiving, racing our bags to the car trunk in the pouring rain. Then came Christmas and Deb was with us that day, her son, and my nephew the week after. Better than my performance on stage that year in ?The Christmas Carol,? was the real-life one I gave over the holidays. I stressed and mourned, cried and hurt; Her gift to my 13-year-old daughter was a Barbie doll nightgown, size 6, meant for a girl that age). We got through and that, rather than confrontations and plunging my sister off the cliff of denial, seemed the more important.

Families should always form a circle of bonding when one of their own is ill. With Huntington?s Disease, there often is little material to form a circle and even that, is so often broken through and beyond by those holding up the periphery of the ring.

T.C.