To Live 'As If' - My Story<br>Chapter IV: A New Arrival Very At Risk

Port Reyes Lighthouse
The birth of my grandson in August 1995 was less than a blessed event for me. While my 17 year old daughter basked in the attention of laboring and birthing new life (with myself and 9 of her friends in attendance), and then the visits, presents and adoration of her son in those early post-partum days, my emotions were being tossed as though through a cement mixer. I wanted to love and embrace my grandson, wanted to congratulate my daughter as I passed the torch of motherhood her way. The problem was that she had never shown any maternal desires and her instincts ran a straight line toward caring about and for herself only, herself alone. I fought the inevitable for a good year, even though I was primary caretaker for her baby almost all of that time, before I assumed the role in reality, shifting my first choice title of ?Nana?, (which the boy spoke first, before Mama), to ?Mama?.

The progression of HD in my sister did not stop during this period, nor could it be ignored because I deemed other issues more pressing. In fact, the birth of this sweet baby reminded me of things I had overlooked with my sister earlier on in the year 1995. My sister and I had, after a period of estrangement lasting several years, reconnected in early 1995. She and I connected in our conversations, which were much easier now as she diverted from her lifelong habit of allowing long silent lapses between words that I said. Previously, I had always felt the compulsion to fill those gaps in conversations, sometimes feeling like I was dancing on my head to keep the ?flow? of discourse, which was in reality, very one-sided. We talked in those early days of the year and she revealed that she had been seeing a therapist, had at long last revealed the secrets of her childhood, the incest that she had adamantly denied previously. She had been depressed, she said and so had I. I had been depressed and on medication in the past and I felt I understood the process of healing from childhood sexual trauma, and how depression, leading to therapeutic relief and reconciliation with the past, were positive steps. We had long talks those days and I am certain, though her contributions were more, mine was still the moderating and controlling voice.

My sister, during one phone call, related the latest topic of discussion in her therapy. She had only one child and she still wanted another. She felt robbed because she had asked her estranged husband about having another child with her and he had rejected the idea. Hearing this, and also having heard my daughter, in a false attempt at earning my approval, speak of adoption for her unborn child, I jumped with the offer. I spoke with my daughter, with my sister and ?pitched? the offer that my daughter give her baby up to her aunt. Deb?s son, after all was a testament to her excellent mothering skills. He was so healthy, happy, independent and a wonderful person.

Shortly after these conversations, Deb called and reported something...well...strange. She said that she was working through the incest and in doing so she sometimes confused my nephew with her abuser, my father. She said that she had talked to her son and told him he had to understand. She was angry with my father and when she released that anger, beat on him, it wasn?t ?him? she was hitting but her father. Cathartic is the word I think she meant to use. I heard this and though I still did not feel my sister was suffering anything other than the long-term consequences of keeping such a toxic secret inside, I never mentioned the adoption matter again.

In retrospect, during the days after my grandson was born, days when I was certain my sister had HD, I felt the sting of ignorance and shuddered at the conclusions I had formed in my head, the ideal ?solution? of giving a baby to my sister to raise, of her personality changes, depression and therapy all signaling a move toward healing and her life finally progressing toward places of happiness and fulfillment which she had always so richly deserved.

My sister loved birthdays, her own and those of the people she loved. My birthday that September 1995 was no exception as she insisted on coming up to celebrate and honor my ?special day?. Deb had visited since the July vacation and during the month of August, but this particular occasion found me wallowing in resentment and bitterness as I found myself, that entire weekend racing around to meet the needs of an infant, of three older children who also needed feeding, and Deb. When I finally was given a ?break? from other duties, Deb reminded me of a ?promise? I?d made previously, that we would go to the movies. I was tired, and the bitter feelings had deepened, but I dared not back out of what Deb perceived as a ?commitment?. In bygone years, Deb had never taken my backing out of planned activities well, dealing with this transgression in complete silence, while adding it to a mental list, which when filled by her own resentments was then recorded on paper, in a letter, to me, listing in detail all the things I had done to ?make her mad? over a period of time. By 1995, THIS Deb was gone and though the ?new? sister who took her place was just as un-accepting of broken promises, she was very demonstrative and loud about her displeasure. Not wanting to risk a loud confrontation, I stepped softly and pacified Deb into going to the video store with me and renting movies that we could watch at home. I wondered, at the end of this weekend why, I, the birthday ?girl? spent its entirety in the care taking of others.

In October of 1995 Deb began visiting almost every weekend and we went on a series of what I called ?field trips?. She had touched my heart when she told me, early that month that she thought of her weekend stays at our house as mini-vacations. She was still working and still driving (though retrospect again clangs the bells of alarm-- why, after hearing about her encounter with the police and the roadside sobriety/breathalyzer test story, did I, did any of us, think it just fine that she keep driving the 60 miles to my house?). One of the trips we took was to the Point Reyes Lighthouse, on the Northern California coast. I had prepared for this visit, this trip in what was becoming a ritual for me. Before Deb arrived either my husband or myself (or both) went out and bought quantities of beer. I drank one or three before Deb arrived, as I waited and tried to quiet the anticipated distress felt at her immanent arrival. When we reached the Lighthouse, I charged ahead of everyone else, running away from the image of my sister?s stumbling, unbalanced steps.

Actually, I had closely observed my sister?s gait that day. I did not see any actual stumbling or witness moments of clearly defined imbalance. Far more subtle is what I saw, those flaws I can define, odd distributions of weight on Deb?s feet, causes of hard, noisy landings where the force is gathered on the heel of a step. A slight headfirst plunging when weight, her feet touch ground, toe first. I will wonder lately if perhaps I have invented this whole Huntington?s Disease diagnosis in my mind and if Deb is indeed not suffering it. Then, on flat ground after my descent of the Lighthouse steps, I race off in search of Deb, who is not waiting below as expected.

I am running another competition, an agility race of boulders in the sand and on uneven terrain. I trip over a smaller boulder and come within inches of falling flat on my face. I will be watching the way I walk in store windows for the following few weeks, just to check. It is a crazy place to be, the world of such uncertainty. I hope my sister does not have HD, but I feel certain she does and I know I do not have it, but I am scared that, just as she cannot see what is happening to her, I am equally blind.

We had another field trip in October, this to Fort Ross which is also on the North Coast of California. The fort was built by and for Russian fur trappers who were able to trade with all other existing factions during the days when California was still a part of Mexico. I obtained this information and much more by reading the plagues in the museum and as we walked through the historical grounds and the surviving historical buildings. I tried to focus on these plaques, the history, but my husband and the kids had run off to explore, leaving me to partner with Deb.

This trip I hold no doubt that she had HD. Her walk is all I see as we tour the site, even though I have gone to extremes in denying and avoiding here. She is off-balance and stumbling but both seem benign compared to what I cannot avoid, conversation with Deb. I built my own fortress here and afterward could not recall a single word of the substance of our exchanges. I only recalled the wincing I did every time she fumbled for words, began sentences with her repetitious prefacings of, ?Oh, I don?t know...I?m trying to decide...I?m trying to think..." when I had not asked her to do any of these. She stung me with her happiness and pleasure in just being at the Fort, pleasure revealed over and over with words telling how much she liked ?being here?. I answer these with mere phrasings which fill the air around, imbued with a spirit I do not feel, of like emotion and sentiment. My wonder how it would be to see angst in her or despair, I would attribute her with intelligence and depth once more.

I received a phone call from Deb the last Friday of October. Wary at first, as she faltered through her greeting, her halting speech giving way to words which came in fits and starts. ?Oh...I...well...(silence)...have...was...

(throat clearing).... wondering...?

I was struck first by the similarities here to my later childhood recollections of my father?s speech patterns and as usual now, these sent me on a collision course with my own past. The connection is jarring and unpleasant as I had spent so many years, because of the childhood sexual abuse, trying to erase my father entirely. Now, he is back in my life and I no longer own the right to hate or ignore him, because we now know that he had an illness.

Aside from the jolt down memory lane to childhood, the cadence in my sister?s voice, her words are reminiscent of times and conversations from present day. I wait her out, fearing that I will hear she has been pulled over for suspected drunk driving once again, or has fallen, or something, anything worse.

Instead, Deb, mentions something about ?Regis and Kathy Lee?. I had forgotten that she was on vacation this entire week and so I was puzzled at how she had seen a daytime talk show. But, ?Regis and Kathy Lee? are not at all the names she sought to communication. It takes time, but finally she says, ?No, no....I mean Rosie O'Donnell? Deb manages to inform me that she saw the show today and further, that she learned Rosie was adopting a baby. Here we go, I thought and I launched into an anti-baby promotion, thinking Deb had gone back to where we were last winter, when she felt that having another baby would fix her entire world. I told her, as I was certain she had noticed, how hard I found the work of caring for an infant around the clock, particularly since the last infant I had carried was now 8 years old. ?No,? Deb interrupted me, ?Rosie O'Donnell is single and she adopted a baby. I want to know if she?s gay.?

T.C.