HD66: Search for a cure or a killer?

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HD66: Search for a cure or a killer? Page 6

by Babs Carryer


  I stand up, “I will. Promise. And, Straler, you stay here in the conference room. I’ll go get whoever they decided is next. We’ll send everyone to you, OK? And depending on your timeline here, I’ll make sure you get fed.”

  He gives me a wide, toothy smile. Geesh! As I walk back to my office I ponder what he said. What he asked. The detective asked for help. For MY help. Amy had pleaded with me too. I have to help them.

  …….

  Detective Henrik stays most of the day. By lunchtime he had talked to everyone on the executive team. At 1 p.m., he listens as Matt introduces him and explains to the Quixoticers what is going on and why they can’t talk about any of this to the outside world. Matt informs them about the interviews and then reads the list of who goes when.

  Several employees from the lab look like they are in shock. One of them, Chong, I think, actually drools out of his open mouth. I see Boris grow pale as Matt speaks, and his eyes widen as the detective looks through the crowd. He looks down as Straler’s gaze crosses him. With a last name that starts with a Z, his name is towards the end of the list of interviewees. I remember the couch, the snoring, and the pool of water.

  Straler stops by my office in the middle of the afternoon. He had run out of paper. I give him another pad. He looks at a messaging document that I created to use as a cheat sheet as we talk to outsiders, including investors. He asks me to send it to his boss at the East Liberty station. Buzz! He nods at me and gestures towards his phone. “Yes, Jennifer?” He steps out into the hallway. I can’t hear what he says. He comes back into my office. “Sorry about that. I just needed to check that what you were saying about the investigation to the outside world was OK.”

  I nod, “I know, Straler. It’s fine. None of us has done this before. Murders don’t usually happen in the entrepreneurial world.” He tilts his head to the side. He looks like a puppy. “We’re a startup, Straler. Really early-stage. Pre-revenue. Like I told you, we’re creating new drugs to cure terrible, incurable diseases.”

  He smiles. “Cool. And, it’s alright, what you want to say. I just had to get some guidance. I’m sure you understand. But keeping it general is good. Nothing about murder is suspected or suicide or anything like that. Just stick to the story that the death is being investigated.”

  By the time Straler leaves, the office is shrouded in fog. There are people here, and I assume that they are working, but I am in an altered state of reality. I am not functioning well enough to know if anyone is actually doing their job. I see Boris duck out the back door right after Straler left. I never go out the back door. It leads to the stairs down to the garage, but there is no light in the stairwell. We never bothered to fix it because no one ever uses it. Boris must have used the stairwell before, I realize, remembering how he disappeared.

  …….

  That night, I sit on the small terrace outside of my building, bundled up against the cold, and nursing a glass of my precious The Balvenie single malt scotch that Neal gave me. Arwen is curled in my lap, purring. She hasn’t a care in the world. Neal is working late. My thoughts are swirling. I stroke the cat. I have to help. What should I do?

  A thought comes to me after my second scotch. If I were to go around asking a few questions, in the guise of my marketing role, no one will suspect anything. I’m just Brie, like the cheese. Harmless. I think of Amy and their kids, and how important this is for them. I need to solve a murder. If I solve it, I will find what Errol left for me. For my father. I’ll never forget the weekend that I found out. I was home for Thanksgiving.

  Chapter 9

  November 20, three years before the incident

  “A doctor George Huntington....he gave it the name

  and all these years later it's still the same

  no cure but the patience of the ones you love

  and the busy schedule of the Lord above

  you can usually count on him....but's he's mighty slow”

  Woody Guthrie[1]

  It was going to be just the three of us that Thanksgiving dinner. We lived in cooperative housing, the third such adult commune development in the U.S., started by my architect mother. As members of what was known locally as “the Coho,” we had access to a large, communal garden. My mom did the gardening, but my father was the cook. The weekly community dinners at the Coho were orchestrated by my father since before I can remember. He approached cooking for 100 people like a conductor of an orchestra. He would direct individuals to do this, stir that, mix the other, and a meal would come together with camaraderie and song. I didn’t know how sheltered I was in the Coho until I left it and discovered the real world.

  My dad was the maestro of the community Thanksgiving dinner. Except for this year. How the rest of the Coho were going to pull off the cooking without my father I couldn’t fathom, but I didn’t question it. I was glad to be home and to be off the treadmill of a business that never rests. I had been with Quixotic for over a year, and I was tired. Still passionate about entrepreneurship and our mission, but I needed a break. I missed Neal, but I wasn’t going to be the first to call. He was home in Michigan. We didn’t discuss spending the holiday together. We’re weren’t there yet as a couple.

  I sat at the kitchen table that Thursday morning, nursing a large mug of Peet’s coffee and rubbing a bruise on my forehead from bumping the bedpost last night. My mom had fallen for Peet’s brand coffee when she lived in Berkeley before I was born. I saw on the counter that we planned to celebrate Thanksgiving with a small, locally-grown, organic turkey. I had gotten in late the night before and had gone straight to bed. My dad must have been asleep.

  As I sipped the rich brew, I watched my father prepare the turkey. He seemed to have trouble with the stuffing. There were breadcrumbs all over the floor. He seemed stiff and awkward as he made his way around the counter to the stove. I started to laugh, “Dad, no wonder I’m so clumsy. I see where I get it from!” I couldn’t tell what he was doing, but I think that he was trying to open the oven. “Oh, do you need help?” He was talking to me, but it was hard to understand him. He was slurring his words. “Started early, huh, Dad?” I quipped. I was getting ready to pour myself a mimosa from a pitcher on the table.

  I could see my mother outside on the porch chatting with a neighbor. She had a champagne glass in her hand too. I heard a noise and a scream that I couldn’t place. I jumped out of my seat with alarm as I watched the turkey and pan clatter to the floor, the juices spreading across the tiles like an incoming tide. Then my father’s arms started this weird set of jerky movements. His mouth started opening and closing like a fish. The whole thing was like a series of dance moves, except that it wasn’t graceful.

  “Dad, what’s going on?” He started shaking his head, almost violently. I saw my mother through the screen start to turn to us. Her mouth was open. Was she saying something? I looked back at my father. This is not drunk, I thought. A seizure? I stared at him, but he couldn’t look me in the eye. His eyes kept darting from one side to the other. “Mom?” I called to her through the door. “Something’s going on with Dad. He’s having some kind of seizure.”

  My mother opened the door and screamed sharply as the champagne glass slipped out of her hands. The glass shattered into a million shards of rainbow glass on the cement porch floor. She visibly composed herself as she marched in with a determined expression on her face.

  “Mom, what’s…”

  “Not now, Brie,” she said in her commanding I-am-taking-care-of-something voice. “We’ll talk later. Right now I need you to get me some clean rags from the broom closet. And the broom and dustpan.”

  As I wiped the grease from the floor and my mother helped my dad to a chair, he seemed to settle down, although his face still had a tic, his mouth moving up and down in round O’s. He sat stiffly at our kitchen table, the back of his hand thrumming uncontrollably on the table. I saw drool escape from his mouth. My mother wiped it just before it reached the end of his chin. I stared at him, imagining the drool globbing
into a long drizzle of flowing water that pooled at his feet, a tributary feeding a small, spreading pond. Then I snapped out of it as my mother commanded again, “Brie!”

  “The captain has the conn,” I announced, a phrase from my childhood to cede control to whoever had the keys to the front door. My mother, always the captain, took control in her crisp, efficient way. I went out to the porch to sweep up the glass. I saw her scoop up the turkey, add some more juice from a measuring cup, and pop the bird into the oven.

  “It’ll be alright,” she announced to nobody in particular. “Not to worry, dinner will be fine.” I watched the glass pieces mixed with leaves and twigs from the porch fall slowly into the garbage can as I brushed out the dustpan.

  I drank too much at dinner. So did my mother. Store-bought wine, I noted. I thought we had an endless supply of my dad’s homemade wine. When had he stopped making it? He wasn’t drinking either. My mother had to help him a few times, cut up the turkey and such. Where was my supervisor dad, who used to do all this with a laugh and hugs all the way around? I didn’t ask.

  We passed the time without incident. But I remember every detail, every clink of a fork, slurp from a glass, and, most of all, the heavy silence that hung over us like the gray Amherstian sky outside.

  My mother took my father up to bed early that night. She stayed upstairs. I stayed downstairs, drinking, thinking about Neal, wishing I were with him rather than here. The house grew quiet except for the occasional creak. Are you keeping a secret from me?

  As I made my way upstairs to my childhood bedroom, I stopped to look at the pictures on the wall of the three of us: at the beach over many summers, on a cruise to Alaska when I was 12, playing in the leaves with my dad when I was six. Memories.

  My mother had folded down the corner of the handmade quilt on my single bed. I remember when she made it. The Coho had started its version of a quilting bee. In hippie-style, everyone contributed to everyone else’s quilt. Some of them turned out to be a ghastly hodge-podge of designs and colors. Mine turned out kind of sweet with natural greens, blues, and browns. “The green to match your eyes,” my mother told me when she first put it on my bed. “The blue is for the sky and the brown is for the earth. And you see the green sandwiched in between? That’s you, my belle.”

  I used to ask her about my green eyes. “How did I get them when you and daddy have brown eyes?” I had learned in school about dominant and recessive genes.

  “Ah, some things cannot be explained by science,” she would say ambiguously. “Not by science…”

  As I was falling asleep, I thought dreamily about my father’s weird seizure. It’s not a seizure, I told myself sleepily. I’ve seen something like it before. It’s like chorea…” I know that I said it out loud. Chorea! Bolting upright in bed, banging my head again on the bedpost, I realized where I had seen that kind of jerky set of unruly movements before. “Gadzooks, I don’t believe this.” I unzipped my backpack and brought out my laptop. I opened it on my childhood desk and began to research.

  “Mom?” I asked at breakfast. “Can we talk?”

  She looked at me and then softly said, “Yes, Brie. After breakfast.” The meal was interminable, and washing up seemed to take a month, what with the slow sudsy water and me wiping each dish. Far be it for my groovy parents to have a dishwasher. “I prefer the old-fashioned approach,” she said, reading my mind. “The warm water makes me relax, and I can think.”

  My dad was dozing awkwardly in the study by the time we finished the dishes. We sat down with cups of strong Peet’s. “It’s Huntington’s isn’t it?” I asked.

  Chapter 10

  That same year

  “My arms felt funny moving all the time

  and sometimes my head didn't feel like mine

  kept telling myself it was the Ballantine Ale

  and them jugs of wine on the writing trail

  I prefer a disease you can sober up from”

  Woody Guthrie

  My father, George Whyte Prince, was 55 at diagnosis over a year ago. Dottie Grace Prince, my mom, had noticed physical and emotional changes starting a few years ago. “He starting having small tremors, mood swings, temper flashes, totally out of character. I – we – didn’t know what it was for a long time,” she told me. “We thought it might be everything from early Alzheimer’s to Multiple Sclerosis. We spent over a year going through test after test. All the time, George, Dad, was getting worse. We didn’t think Huntington’s for a long time. There was no history, you see. But one day your dad was talking about his mother, you know, Granny Prince? He mentioned her cancer, and it hit me. It wasn’t cancer at all. They really had no idea. She was never diagnosed. They just assumed. She went so quickly. Unusually fast, according to what I now know. They saw the jitters, but they never connected the dots. It was a different time…”

  I fingered my grandmother’s pearls around my neck. “You mean she had Huntington’s and they never figured that out?” So stupid, I thought. But, of course, if my dad knew, he would never have married my mom. He certainly never would have had children. I just wouldn’t exist, that’s all…

  My dad has Huntington’s Disease. And what I saw yesterday is chorea. That was only the beginning. I’d probably see it again before I left, 48 hours from now. And it would get worse.

  …….

  “Been on this road for a mighty long time,

  Ten million men like me,

  You drive us from you’ town.

  We ramble around.

  And got them 66 Highway Blues.”

  Woody Guthrie

  I already knew a lot about HD by the time I knew about my dad. Errol had published extensively on this subject. I had read all of his papers. He would quiz me to make sure I had actually read them. “I’m counting on you, Brie,” he’d say.

  At Quixotic I needed to write about what we did and create presentation materials. Errol took me out on the “Random Scoot” to explain it to me, “just the two of us.” As we drifted in neutral, he peered at me over his glasses and continued, “I’d like for you to understand the science, Brie. You have a background in neuroscience. You’ll get it. And,” he stopped to smile broadly at me, “You’ll be able to explain it to anybody – to your parents – after I explain it to you!” Little did he realize…

  I oversaw the development of the video about HD and how our drug could cure it. Errol had dubbed the drug that he discovered in his university lab, the one that was licensed into Quixotic, “HD66.” The 66 was named for the famous Mother Road, Route 66, which went from Chicago to California. Woody Guthrie, who died from Huntington’s, traveled the famous road and wrote about it in the lonesome, sad song, “Highway 66 Blues.”

  Besides the research that I did on my own, I picked up a lot from the scientists at Quixotic. In addition, Errol let me observe his patients as he treated them and talked to the families. “This is my intern,” he would explain to the patients and families. I watched. And now, I remembered.

  The images of the Quixotic video haunted me Saturday night as I lay in my childhood bedroom. HD damages the nervous system by promoting apoptosis, or cell death, of neurons in the brain. We show this through animation. Ani-frigging-mation, I thought ruefully. As we ate a simple dinner of Thanksgiving leftovers that night, I imagined my dad’s brain cells dying with little pops, one by one, pop, pop, pop, taunting me and my inability to help him, or to stop the steady and painfully slow march to incapacitation, and the silence that will take over at the end.

  “Typical symptoms of HD include emotional instability, personality change, loss of memory, dementia, declining motor skills, anxiety, and paranoia,” I had told my mother that afternoon. She had read about all this, but she was impressed. With my father, we have not yet run the full gamut. I know what will come; I am loath to share my knowledge with my mother. But she has done her own research, and I will not intrude to tell her what she does not need, or does not wish, to know.

  She looked at me with hooded eyes befo
re I went to bed that night. “I’m sorry, Brie,” she said. “I’m so sorry.” Just as well I never had any siblings. Thankfully, I did not say that out loud as I traipsed up the stairs to my bedroom.

  I couldn’t blame her for not telling me sooner. What would that have accomplished? She didn’t know that Quixotic was focused on HD. A year ago we weren’t even in clinical trials. Knowing wouldn’t have helped. Still, I felt cheated. How and when was she planning on telling me? Now, I realized. Now is as good as any. How ironic; Thanksgiving is the perfect time to tell me. She didn’t plan for it to happen exactly this way, but she did plan for it to happen this weekend.

  As I lay unsleeping that night, I reminded myself that the progression and symptoms of HD vary widely on an individual basis. We don’t know how fast the disease will progress in my father. My affable and warm father, who would hug me at the least provocation. A softie at heart, he was a favorite amongst my friends. He coached soccer, softball, and ping pong, even though he wasn’t great at playing any of them. He goofed off with my mom, showing his love with embraces around the kitchen stove and what I was sure were wet kisses. George was never wildly successful in his career. He and my mother had moved to Amherst from Berkeley, where they had migrated after attending Reed College in Portland, Oregon. George was an environmental psychologist. Most people looked at him strangely when he said those two words together. But he had received his PhD from the University of California at Berkeley and, from there, found a research position at the University of Massachusetts, where they settled, just in time for my birth.

  My mom is a strong spirited type who studied philosophy, art, and the obligatory calligraphy at Reed. At Berkeley she got a master’s in architecture. Once they settled in Amherst, she opened her own office, and stumbled upon the idea for co-op housing, a communal living environment for grown-ups. Amherst was one of the earliest co-op housing developments. Now they are popular all over the country. My mom designed several of them. She’s been on television and has been featured in national magazines and newspapers. We’re not well off financially, but we’re comfortable.

 

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