To Live 'As If' - My Story Chapter VIII:The Long and Winding Road Comes to an End


I had not seen my sister since Christmas 1997 and here it was February 1998 already. Deb had been off work for a year now and was home all day. I was also at home now, raising my 2-year-old grandson full-time. Deb and I connected by phone many mornings and our conversations were mostly very pleasant. She had taken quite a fancy to my young grandson and he to her, so she would ask me to put him on the phone and, when she didn’t I ‘used’ him to fill those awkward conversational gaps between us. When Deb couldn’t reach me, because I was either out driving the older children to school or running an errand, she would leave messages on our answering machine, directed to the little toddler who delighted in hearing her voice. The last one she left was kept on our machine for over a year, until we had to replace the unit and it was lost. By that time, my grandson had forgotten his Aunt and hearing the sound of her recorded voice meant far, far more to me.

I am jumping ahead of myself. Deb always loved holidays and began talking about making a visit here over the Valentine’s Day weekend. She had cards and gifts for our Valentine’s Day (one present for my eldest daughter, who’s January birthday she had missed). The plan was that we would pick Deb and my nephew up early Saturday morning, February 14th.

On February 13th the phone calls began. Though Deb had not spoken at all about HD since receiving her positive test results, she no longer seemed to be raging against it either. In fact, her moods had been quite stable lately. It was a surprise then, to hear her anger return in full force, when I challenged her revision of our plans. Deb no longer wanted or needed to be picked up and brought to my house; She was going to make the drive herself, just as she had done hundreds of times before.

The phone calls continued, off and on all through the day and into the night. My brother-in-law was brought into the drama when I contacted him because Deb was so defiant on the point, that I feared she might start driving up at any moment. My younger sister was contacted and she brought Deb and my nephew to her house after she got home from work. We spoke to Deb, to each other and to my nephew (who was ordered by all parties, NOT, to get in the car with his mother if she tried to drive up here). My younger sister plied Deb with a few Pina Coladas and this seemed to have a pacifying influence.

I’ll never forget her words as she made her most impassioned plea. “ I just want to get up at the crack of dawn, pack the car and drive up there, just the way I always have. I...want crack...of dawn, just like I always used to. One more time. That’s all. One more time. I promise, if you let me do it just this one last time, I will never drive again. But, I want to get up at the crack of dawn...and...go...just one more time.” She was crying as she spoke and it touched my heart. Had I not known how dangerous she was behind the wheel, how poor her driving skills now where, I surely would have taken her side and given approval.

I did not and in fact none of us would budge on the issue and so, after a few angry words for and about her ex-husband (always her rescuer, always her ‘bad guy’ because to her mind he had claimed ownership of the responsibility for removing, bit by bit, her independence), Deb backed down. I was taking a tap dance class with my middle daughter (another of those ‘methods for demonstration that I was HD free’, my tapping feet moving in sync with the steps of a coordinated dance routine). Our class met from 9:30 to 10:30, so I would not be able to pick Debbie up and bring her back here until well after noon. It was decided that my oldest daughter would drive down as soon as Deb called, first thing in the morning or as close to the ‘crack of dawn’ as she could manage, so as to be in keeping with Deb’s wishes. All was settled then for the Valentine’s weekend visit.

There was no phone call from Deb before I left that Saturday morning for dance class. My older daughter was awake and sitting at the ready, so I expected, as I drove the 20 miles to our class, that Deb would be on her way or maybe even already arrived at home, when we returned. I felt what I thought was the familiar knot of dread, as I drove, that twisting of conflicted emotion I had been dealing with when I spent time with my sister, saw the HD changes in her. Something was different however about the feeling I had this morning as it bordered on areas of more general anxiety and concern. I recall praying silently with eyes open and having these words, spontaneously form in my head. “She’s in your hands now, God.” It was about 9:00 a.m. when that happened and shortly after, my daughter and I were wholly focused on a new tap routine we were learning. After class, we talked about new steps learned and about plans for the day ahead (my nephew was coming up and my husband always took the kids out to an arcade, skating or some other fun activity).

My older daughter was still there when we returned home. Deb had not called yet. Despite Deb’s claim of a ritual departure before dawn on weekend mornings when she drove up to see us, far more often were the times she did not call or show up until early afternoon. We waited another thirty or so minutes and then I called down to see if Deb was ready to be picked up. There was no answer at her apartment and so I left a message, thinking she might be shopping for her weekend visit. My nephew had been given charge of seeing that his mother did not drive and so we figured that as long as he was with her, all was safe.

We continued to call Deb’s number and then finally, at around noon, tried my younger sister’s house. My younger sister had not heard from Deb, but my nephew, who had stayed over the night before, was still there. I spoke with him and he had not heard from his mother either. Worry began

and deepened with each new revelation, as my nephew, dispatched over to his apartment (which was just a few blocks from my other sister’s place), found no signs of either his mother or her car.

My daughter left then for the 75-mile drive down to Deb’s. The plan was that she would stay with her cousin, my nephew and work on finding Deb from there. I remained stationed up here on the very good chance that Deb had carried through with her plan to drive up, and that she would be arriving soon.

We waited, made fruitless phone calls to police and the Sheriff’s department down where Deb lived. My nerves jangled every time the phone rang here and I answered with a note of hesitance, until I heard the voice on the other end -- my brother-in-law, my other sister, my daughter, my step-father -- all wanting to know if I had news.

My nephew decided early into the afternoon, that he would prefer to wait up here for his mom and my daughter brought him up.

My nephew joined the kids in the living room, the minute he crossed our threshold and it was as if he had made passage from the weighty burdensome role of searching and worry about his mom, into his designated role here, as one of ‘the kids’. The horseplay was not as loud as usual, so I am certain he was on one level listening to what was being said in the other room. Still, he played video games and teased everyone, including the toddler. As the days’ events unfolded he almost never left his perch in front of the television, responded to otherwise stunning emotional news bulletins, with incredibly stoic control and silence.

We pieced together scenarios, made conclusions based on when she must have left her apartment. Deb may not have started out before dawn, but even if she had departed just moments before her son checked at 11:00, she would have long ago arrived up here. We thought of other places she might go and even came close to calling my grandmother in Southern California. Deb had visited grandma more often than both my other sister and I put together over the years. She loved taking off for a long weekend, driving the 800 miles round trip.

My daughter’s friend dropped by and it was this girl who suggested going to the Highway Patrol office in town. Off they went, though I felt certain they would find nothing, considering that we had been unable to get information from local agencies, hospitals and other places we had called. A short time later however, the phone rang and finally there was news. My daughter was speaking with an Officer who had made some calls and located Deb’s car in a neighboring County. There was no sign of, nor news on Deb as yet, but I passed the word to the waiting family members after I finished speaking with my daughter, who was staying put while the Officer looked for more information. I pieced together a quite credible story. Deb, in her attempt to drive up here, took a wrong turn and ended up on the other side of the Golden Gate Bridge, heading North. She had probably been pulled over, refused once again to divulge her HD status, and was waiting in some police station. Well, we would be sure to get her license from her this time. I tapped into my own projections of her reaction to the scene, feelings of humiliation, degredation, despair and, of course tears. Harsh and the images played in my brain, I felt their purpose would be served and willingly she would now surrender those car keys forever.

The phone rang again. This time there was a sharp intake of breath on my part before I could say, “Yes? When the voice called me by name, it was my daughter’s friend and not my daughter herself. The friend asked if I was sitting and when I said no, she told me, “You better sit down then.”

I’ve always wondered, just as I wondered during that insane moment out of time, why people say that...”You’d better sit down?” If something is going to send me into shock or a dead faint, isn’t there just as great a chance I will hurt myself falling off a chair? Why not just say, “You’d better lie down.” Worse however is the way the cliched preface in itself tells the news. My daughter’s friend had to say nothing more.

My sister had made her early morning drive, her ‘just one last time’.

At approximately 9:00 a.m. she was only a short freeway distance from the exit to my home, when her car left the road. She careened down a very slight, grassy slope and crashed into a long concrete slab. We were told that she suffered massive chest trauma and was gone on impact. I was spared then, the agony of knowing that she was not suffering, all those hours her car went unseen by passing motorists, her accident undiscovered.

There were many other haunting thoughts for me in the days, weeks and months following my sister’s death. The family grew closer for a time and we talked, forgave and understood as we shared our memories, our love and the ways we would always miss her.

Yes, I did love my sister, but ours was never an easy relationship and, in point of fact it was improved or at its best, after the onset of her Huntington’s symptoms. I could not accept her ‘deficits’ however and cried numerous times over the comparisons between her actions and words in the present to those from a time back when she was ‘normal. Which sister, then, did I miss? Who did I eulogize at the memorial service, borrowing lyrics from Beatles songs that Deb loved when she was very young?

It struck me down the road, what I was actually ‘missing’. The pictures playing back in my mind, of Deb’s unfettered joy at a trip up the Coast, or her excitement at visiting me for a weekend (calling it a mini-vacation), or her total enjoyment at our neighborhood 4th of July parties where she conversed with anyone and everyone (and where I was terrified she would do something ‘embarrassing). So many other images I carried and I came to realize was that I was not ‘missing’ my lost sister, but that I had MISSED OUT on my sister, on being with her, loving her and enjoying those times of her joy and enjoyment, right along with her.

My life has been and is still touched in many other ways by the fact that I am at-risk for Huntington’s Disease. For me, the biggest curse by far, is the way it poisoned my ability to be with my sister, to enjoy what were good years, where she had plenty to give, plenty of life and living still to come. We shared a common legacy, the possibility of a defective gene being passed along by our father. My sister definitely inherited the gene, while I loped around in the shadows on the corner at the intersection of Hope and Not Yet, If Ever. There was no sharing, no bond in this, for us.

A week after Deb died, my daughter went to the wrecking yard where her car had been towed. She was unable to retrieve much, including her own birthday present, because of the extensive damage, but she did bring back a few personal items...including a Valentine’s Card she had brought for me.

The card was a symbol of my sister’s love, not only for family but for the act of living. I had no Valentine for Deb that year, had planned to buy something just ahead of her arrival that fateful Saturday. I send her Valentines in my head, each year on that holiday, the final day of her life.

I tell her that I love her and that if I could only do it all over again, I we would have had great times together after she began suffering ‘the disease’. I would have done great, I promise, listened to her and laughed with her and taken, I still cannot in honesty say ‘of her’ as she required more and more. I would have taken care to embrace her and be friend, companion, someone who gives always completely and with love.

The card returns automatically to sender, my own impossible promises to a sister released from the struggle with her disease, become promises I dearly want to hear spoken to me. I want promises from another person, one who loves me and will treat ME, should I follow down the same genetic path as my sister, the way I wish I had been able to treat her.