Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington's

By Therese Marie Crutcher-Marin

Therese Crutcher-Marin’s world was turned upside down when she learned that her fiancé, along with his three sisters, were all at risk for Huntington’s.

Huntington's disease is a devastating inherited condition that produces a combination of neurological, motor, cognitive and psychiatric symptoms. It’s been com

• Language: English
• Publisher: NorCal Publishing Company
• Release date: Apr 15, 2017
• ISBN: 9780998442228

Therese Marie Crutcher-Marin

No one could have written Watching Their Dance but Therese Crutcher-Marin. Therese multitasked for years: working fulltime, raising two children, coping with her husband's at-risk status for Huntington's disease, and eventually managing the care of two sisters-in-law and observing the decline of the third. Therese earned her college degree in business administration with a concentration in marketing and went on to work in management in Sacramento. Later, knowing that at least some in her husband's family would develop Huntington's, she chose to pursue a master's of science in healthcare administration, and later worked as head of support services of the Auburn Faith Community Hospital hospice program. Her goal: to empower people with the knowledge and resources to maintain dignity, quality, and control in their lives until their final breath. Therese managed more than two hundred hospital volunteers, which strengthened her community-outreach program, and established two revenue-producing entities for the Auburn Faith hospice program, the hospice thrift store and Hospice Healing Garden, both of which continue to fund the hospice program. She has been a member of numerous boards and committees, including the Placer County Commission on Aging, the Older Adult Advisory Committee, and the Sacramento Hospice Consortium. During her healthcare career, Therese developed and implemented yearly marketing plans that included newspaper articles and ads, quarterly newsletters, brochures, radio and TV appearances, and talks to clubs, service organizations, and professional associations. She taught a class called Born Dying at Sierra College, in Rocklin, California. She published The Placer County Senior Resource Guide, now in its twentieth year of publication. Being a part of the Sacramento Suburban Writers Club fueled her desire to improve her writing, as did the critique group she participated in for two years. This is her first book.

Book preview

1

Some lives seem to move smoothly along a natural continuum, with one event or decision seeming to slide into the next. Such people seem to have faced no dramatic forks in the road, had few life-altering choices to make. Other lives, at least in hindsight, travel in a particular direction at one particular life-changing moment. That’s what happened to me, when, at age twenty-two, I suddenly had to confront the most complicated decision of my life.

I met John Anthony Marin in 1976, when we were attending junior college in Contra Costa County, across San Francisco Bay on the far side of the Berkeley hills. I was twenty and he was one year older, with light brown hair and kind hazel eyes, tall, handsome, and athletic; I fell for him immediately. We felt so close so quickly, it wasn’t long before we were a couple.

I quickly learned that being with John meant having his three older sisters in my life as well. The four had had a difficult upbringing and were exceptionally close. Their mother had been placed in a psychiatric hospital when John was just a baby. Their father, Big John Marin, would never tell them why their mother was gone and when she might come back. Of course, his life was difficult, too: In addition to having four children under age six and working full-time, he helped his elderly immigrant parents manage a five-acre ranch next to his home. Even so, he didn’t seem to take much interest in his children, never showing them affection or encouragement, only criticism and negativity. He treated his oldest daughter, Lora, as a housekeeper, and the others just stayed out of his way.

When I met them, Lora was twenty-eight, a blond, striking woman with a creamy complexion, twinkling eyes, and a welcoming smile. Her generosity and bubbly personality drew people to her; I always felt a light radiated from Lora. By day, she was a secretary at an accounting firm in Sacramento; by night, a highly creative chef. I loved visiting her and her husband, Dave, a jokester and life-of-the-party kind of guy. He and Lora had become a couple when she was fourteen, and Dave had embraced John, then eight, like a big brother.

Marcia was twenty-six. She was shy but sophisticated, glowing with gentility—the first woman I knew who looked chic in jeans, maybe because she had them dry-cleaned. Her light brown curly hair and makeup were always impeccable. Neither sister had a college degree; after Marcia graduated from high school, she’d gone to work in San Francisco in the typing pool at Pacific Bell. But she was smart and ambitious, and ten years later, her title was Marketing Representative. She lived in an apartment in Walnut Creek, about fifteen miles east of Oakland. She’d been with Glenn, a local realtor, for several years.

By the time I began dating John, Cindy, two years older and his childhood buddy, was working as a dental assistant in Surrey, British Columbia, just above the Canadian border. She visited during the holidays, so I’d been with her a few times. John called her a free spirit and the positive force in their family. Like John, she had a wide smile and hazel eyes, and there was no denying their kinship.

Whenever I was around the sisters, I noticed how they doted on their little brother, who, at six-foot-three, towered over them. It had become clear to me how much they supported, protected, and defended one another, no matter what. We spent lots of time with Lora and Dave, Marcia and Glenn, playing softball, having barbecues and parties, camping, just hanging out.

At times, I envied the Marin siblings’ relationship. Even though they’d had such a challenging childhood, John and his sisters were all positive, fun-loving, giving individuals, so different from my Catholic-ritual-driven, take-no-chances family. I’d grown up in a home where the first reaction to just about anything was negative, and I’d been taught never to draw outside the lines. Independence and self-esteem were never encouraged; instead, my parents used guilt, a good Catholic method of control, to motivate my sisters and me. How could I not feel guilty when I felt closer to Lora and Marcia than I did to my own sisters?

By 1978, my relationship with John had become a long-distance one—four hundred and eleven miles, to be exact—since he was at California State Polytechnic University (Cal Poly) in Pomona, and I was attending the California State University in Sacramento. John would drive the eight hours to see his sisters and me as often as possible, and whenever he was home, we stayed with Lora and Dave. We had so much fun during those visits, I never minded sharing him.

Our lives changed dramatically one Saturday afternoon in early November. Though Thanksgiving was just a few weeks away, John’s sisters had asked him to come home that weekend and to bring me with him to Lora and Dave’s house that afternoon.

Cindy was there, too, having flown in from Canada the previous week. I wondered why she, too, was there before Thanksgiving. John’s sisters and Dave greeted us at the door with their usual smiles and hugs. John and I sat on the comfortable white couch as his sisters finished preparations for dinner and Dave took a phone call. I looked at Bubba and Cedrick, their Keeshond dogs, lying on the brown shag carpet in the sun; at the custom-made macramé hanging I’d always admired, above the brick fireplace; at the framed photographs of Dave and Lora, the Marin siblings, Lora holding Bubba with a huge smile, on the sand-colored walls. The fire roared in the hearth as soft music played on the stereo. This cozy room, always such a safe haven, now felt strangely cold and unfamiliar.

My apprehension grew as the sisters’ whispers floated into the living room. Turning to John, I murmured, Do you have any idea what they want to talk to us about?

He shrugged. It’s something to do with our mom’s side of the family, but other than that, I’m as clueless as you.

Just then, the three sisters entered the room. I felt the hair on the back of my neck stand up. Dave leaned against the doorframe as Marcia took a seat across the room, crossed her legs, and wrapped her hands around her knees, smiling vaguely, like a Cheshire cat, I thought. Lora sat next to John and began patting his thigh and nodding as if to say, Everything’s going to be all right. Cindy pulled up a footstool and sat down in front of us.

The three of us visited Aunt Evelyn last week, she began. It’s been years since we’d seen her, and we decided it was time to reconnect. She looked at me. She’s our mother’s younger sister; she lives about an hour south of Sacramento, in Galt. We learned from her that we have a genetic disease in our family, called Huntington’s disease. Our mother, Phyllis, and three of her siblings had it. She paused a moment to let the words sink in. We rarely saw our mother’s siblings after she died, so we were unaware that they had suffered from it. It’s an inherited disease that causes the progressive breakdown of nerve cells in the brain. It affects muscle coordination and leads to behavioral symptoms and, um, mental and physical decline.

Aunt Evelyn was shocked that we didn’t know about the disease in the family, Lora added. Since Dave and I don’t have any kids and Marcia and Cindy are single, she assumed we’d made these choices because of Huntington’s.

My hands squeezed John’s like a vise, and I moved so close, I was almost sitting on his lap. Otherwise, no one moved; it felt as if an icy despair had frozen everyone in the room. My eyes darted from sister to sister. The word what formed on my lips, but I couldn’t make a sound.

The only thing I knew about Huntington’s was that the great American singer and songwriter Woody Guthrie had died of this terrible wasting disease, and that his last years were even worse than they had to be. Slowly losing control of both muscles and cognition, he became increasingly erratic. At first, he was deemed an alcoholic and then diagnosed schizophrenic. Like John’s mother, he lived in psychiatric hospitals for years until he died.

Cindy, always the fearless one when it came to dealing with their father, said, After the visit, I called Dad and asked him if what Aunt Evelyn had told us was true. I pressed him for answers, but you know Dad. He got angry and never admitted that Mom had had Huntington’s.

Coming out of her trance, Marcia said, The good news is now we know what was wrong with Mom. But the bad news is we each have a fifty-fifty chance of inheriting this disease. And there is no test or cure.

Cindy went to the French doors and stared out at the piles of crimson leaves in the yard. Then she turned and faced us. I’m tired of not knowing why things happened in our lives. Dad kept us in the dark, not just about Mom but about everything. It wasn’t fair, because we deserve to know, especially about this.

Lora said, We asked him for Mom’s death certificate, and he refused to show it to us. So Marcia went to the Contra Costa County recorder’s office and got a copy, and sure enough, it said, ‘Cause of death, strangulation,’ with Huntington’s disease as the underlying cause, because she’d had to be tied down in her bed.

The room grew silent again. Lora continued to pat John’s thigh while watching me. We’re sorry to drop this on the two of you, but since you guys are talking about marriage, it’s only fair you know about the family, Therese.

I blinked my eyes rapidly, trying to clear my head, and looked at John. He just smiled and squeezed my hand tighter. After a few moments, Lora said briskly, Okay, who wants a drink?

I do, we all responded simultaneously.

As she and her sisters walked into the kitchen, I shouted, Double shot of bourbon for me, please! John sauntered across the room and began talking with Dave; Dave slapped John on the back, and they immediately started to laugh.

I leaned back on the couch and took a deep breath as I felt this compelling information slowly registering in my consciousness, alerting my senses to danger. A struggle began between my brain and body: As anxiety and doubt crept into my mind, a primal instinct screamed, Run, but my heart said, Stay. I felt as if I were being pulled one way and then another, back and forth, back and forth.

My body jolted to a stop when John sat down. Here’s your drink, Therese. Are you all right? Did I scare you? You jumped when I said your name.

No, no, I’m fine, just…just a little chilly. Can you get my sweater, please?

John returned with my sweater and wrapped it around me. Are you warm enough now? I nodded and took a gulp of my drink. When Dave turned on a football game, John’s head snapped toward the TV, and he moved to the edge of the couch.

Stirring the ice with my finger, I stared at the russet liquid as my racing heart slowed down. I felt as if I had just watched a scene from a bad play and the curtain had come down with a thud. Needless to say, I was glad it was over and the actors back to their usual selves, but my anguish remained. I had no idea why the sisters had sought this information now. So many questions were popping up in my mind, and unfortunately, they would remain unanswered, because the final act of this play was unscripted, the starring actors unknown. Happy or tragic, the ending would play out only over time.

I looked at John and Dave, cheering for their team, and watched the sisters laughing in the kitchen. Were they trying to put on a good face for me? No, they’d chosen to ignore something they could do nothing about, at least for now. So I tried to change my frame of mind, too, and went into the kitchen. Can I help?

At dinner, Lora kept serving us her delicious lasagna, arugula salad with glazed walnuts and mandarin oranges, the world’s best garlic bread; Dave never stopped pouring wine and telling funny stories, and we got through the meal. By the time we were devouring Lora’s homemade apple pie with vanilla ice cream and Irish coffee, life seemed almost normal. For these four siblings, the new reality meant living at risk for a terrible disease, for how long, no one could predict. All they could do was push the thought aside for a while.

The next morning, John and I said goodbye to his family and went back to my apartment. It was about a mile from campus, your usual two-bedroom student digs, with posters of Rod Stewart, Kiss, and Fleetwood Mac on the walls, a little balcony off the living room where we stored our bikes. We had it to ourselves, since my roommate, Mary, had gone home to Martinez for the weekend. John and his sisters had also grown up in Martinez, an oil town about fifteen miles west of Walnut Creek, on the south side of the Carquinez Strait. Martinez had been home to a Shell Oil refinery since 1915, and its tanks, buildings, smokestacks, and hundreds of miles of pipes covered a thousand acres of land. Every year, oil tankers docked in the Martinez marina unloaded thousands of gallons of crude oil and shipped out thousands of gallons of refined gasoline and other petroleum products. When you drove past the town on Interstate 80, the smell of oil permeated the air for miles. John and Mary had gone to high school together; in fact, she was the one who had introduced us, at a party in Martinez when we were all attending junior college.

As we studied, I wondered how John felt about the shocking family secret that could change his life, but I didn’t know how to bring up the subject. There really wasn’t enough time to talk anyway, and I wanted to enjoy the time we had left that weekend.

At one o’clock, John looked at his watch and closed his book. He had to get on the road, and in a few hours I had to start working in the men’s department at Weinstock’s, then Sacramento’s finest department store.

John gathered up his stuff, then stopped and leaned back in his chair. I know we haven’t talked about yesterday, and you must have a million questions. How about we talk about it over Christmas break? It’ll give me time to discuss it with my sisters and get some of my questions answered. You probably have the same ones.

I reached across the table and took his hand. That sounds good. And I’ll try to find more information about the disease. In the parking lot, we stood next to his car, unwilling to say goodbye. As we hugged one another, I leaned my head on his chest. Be careful on the freeway, I said. I’ll call you Friday night.

John drove out of the parking lot waving and honking his horn. As soon as he disappeared, the realization that my life would never be the same hit me. I stood there a few minutes more, tears rolling down my face.

2

The next morning, I didn’t have a class until eleven, so I headed to the library, Marcia’s words echoing in my brain. We each have a fifty-fifty chance of inheriting this disease. And there is no test or cure. As I walked across the campus, the wind was blowing hard and leaves swirled around my feet. Then it began to rain, so I picked up my pace and ran through the library’s automatic doors, right before Mother Nature unleashed a torrential downpour.

Searching for books and magazine articles on Huntington’s disease was frustrating. I finally tracked down a medical-reference book, though it took me awhile to locate it. When I had the book in my hand, I slid onto the cold, dingy tiled floor and began reading the two paragraphs on the disease.

Huntington’s disease was first known as Huntington’s chorea, as in choreography, the Greek word for dance. The term chorea describes how people affected with the disorder writhe, twist, and turn in a constant, uncontrollable dancelike motion. It is a hereditary, degenerative brain disorder for which there is no effective treatment or cure.

I could hardly breathe as I continued reading. The disease causes certain areas of the brain to atrophy (break down) faster than normal, causing the gradual decline of a person’s ability to walk, talk, and reason. Symptoms usually appear between the ages of thirty and forty-five.

The words on the page became fuzzy and my stomach began to hurt. I flung the book away, as if it were too hot to hold. The slam as it hit the floor drew stares from kids roaming the nearest aisle, but I didn’t care. I didn’t want the book anywhere near me, and I pushed it away with my foot. When I noticed I’d begun panting like a dog, I started taking deep breaths and leaned my head against the bookshelf, trying to calm down, as bile threatened to crawl up my throat.

My thoughts quickly shifted to John. If he carries the mutated gene, he could conceivably show symptoms in less than ten years. And if he does have it and we have children, they will also be at risk. I could feel anxiety bubbling inside me like lava, tightening my chest and throat. Was this the way Phyllis had felt when she died? But an even more terrible, because more immediate, question came into my mind, and I dropped my head into my hands. Could I live with such uncertainty?

After several minutes, my body recovered, but my heart began to ache. When I stood up, the room began spinning, and the shelves seemed to close in on me. My mind was screaming, Breathe, Therese, and get out of this building as fast as you can!

Outside, the rain was still coming down in buckets, so I threw my backpack down on the nearest bench and followed it. I was protected from the rain, but the gale slapped my face and whipped my hair into my eyes. Thunder boomed, lightning flashed, and the storm intensified. Like this storm, breaking branches off trees, uprooting bushes, and mowing down plants, Huntington’s was changing the landscape of my life.

On the Tuesday before Thanksgiving, I completed my accounting test, handed it in, and left the classroom feeling pretty good. I was heading to the campus bookstore to sell back my accounting book when I remembered that the firm Lora worked for was not far from campus. I’d been so busy the past few weeks, trying to stay focused and study for midterms, thoughts of how John’s sisters were coping hadn’t entered my mind.

That evening, I picked up the phone to call Lora, then hesitated and put it down again. When the sisters had given us the news, they’d made it clear that they didn’t want to discuss Huntington’s at any length or dwell on it at all. I considered waiting to call her, especially since I didn’t know what was going to happen with John and me, but I quickly changed my mind, because she was my friend and I cared about her. As I dialed, my palms were sweaty and there was a metallic taste in my mouth, because I’d bitten my lip and it was bleeding.

The phone rang four times, and I was just about to hang up. Hello, Lora said.

Hi, Lora. It’s Therese. I could hear the rustling of paper bags and the dogs barking.

Hi, Therese. Sorry it took me so long to get to the phone. I just walked in from work. Can you hold on for a minute while I let the dogs in? They’re really wound up tonight.

Once she was back on the line and we were done with the pleasantries, I said, I’m sorry I haven’t called and thanked you for the wonderful dinner. I grabbed the phone holder and walked the room with the cord dragging behind me. How are you doing? I mean, with the news about your mom?

Oh, I’m fine, Therese, don’t worry about me. How’s school going? Are we going to see you on Thanksgiving?

School is fine. I had my first midterm yesterday, and I have two more tomorrow. And yes, I’ll be over on Thanksgiving, later in the day after my family has finished with dinner. I’m really looking forward to it, because I’ll get to see your brother and exams will be over.

Well, great! I need to run. We’ll see you later. Bye.

Bye.

Lora was acting like the news was no big deal. But it was a big deal to me, and I wasn’t even at risk for this horrible disease. I began to think that might be a normal reaction for the Marin siblings: ignoring a problem until they came face to face with it.

The next day, after my marketing midterm, I packed my stuff and drove the roughly one hundred miles to my parents’ home, arriving that evening. As I opened the front door, I dropped my laundry bag and backpack and shouted, Mom, I’m home.

My parents, James and Rita, lived in Concord, about ten miles from Marcia’s apartment. Our ranch-style house was on a cul-de-sac, with friendly neighbors who took as much care of their homes as my parents did ours. The pie-shaped property had an eight-foot-high concrete wall running the length of the backyard to cut down on the noise generated by traffic on Treat Boulevard. The previous owners had left treasures in that yard, though: orange, cherry, plum, and apple trees and a grape arbor with mature vines. Like most married women of that time, my mother was a homemaker. She loved to cook and bake, so I could always count on finding homemade jam or applesauce, fruit pies or coffee cake in the kitchen.

My mother also loved to hunt for old, discarded furniture and repair or restore it, so our house looked like an antique store. We had a 1900 Victrola phonograph in the living room, and a glass-topped, claw-foot spindle oak parlor table next to the antique couch my mom had reupholstered. In the dining room were an aged dining room table, creaking matching chairs, and a refinished china cabinet. The four bedrooms all had old headboards, footboards, and dressers.

My parents had married in a Catholic church in Kansas City, Missouri, in September 1952. My father worked with the U.S. Postal Service, and important decisions were always based on how they would affect him, not how they would affect the family. My older sister, Ellen, and two younger sisters and I started life in Shawnee Mission, Kansas, with lots of family—aunts, uncles, cousins, and both sets of grandparents—nearby. Our world revolved around St. Pius Catholic Parish and School. Until I was thirteen, we interacted only with Catholic Caucasian families like ours.

That year, my father got a big promotion. After working with the post office since he was twenty, he became a postal inspector and was transferred to Riverside, California (the birthplace of the California citrus industry), sixty miles east of Los Angeles. After years of Catholic school, my sisters and I were thrown into a public-school system, with students of varied backgrounds and cultures and nothing hip to wear, since we’d never worn anything but school uniforms. It was culture shock for all of us, particularly our parents, who could scarcely comprehend what was going on in California in 1969: demonstrations against the Vietnam War, unrest on college campuses, Flower Power, hippies….

Two years later, my father was transferred to Washington, D.C., another tough move for us. And in 1974, after I graduated from high school, my father was transferred again, to San Francisco. By then, Ellen had married, so she remained on the East Coast.

My old-fashioned parents saw no reason for a woman to attend college, so they had never encouraged my sisters and me to be anything other than homemakers, like our mom. After we moved to the Bay Area, I worked for a year in a good government job, as my parents put it. Then I quit to attend college full-time. That paved the way for Amy, three years younger and a bookworm and introvert, to attend Diablo Valley College, as I had. Jennifer, eight years younger, was now a freshman in high school. My grandmother, Lena, was working as a companion to a woman in Rossmoor, a senior-living community in Walnut Creek. When I was still living at home, I used to pick up Grandma on Friday nights and drive her back to our house for the weekend. Amy had that duty now.

Our Thanksgiving dinner was as quiet and unexciting as usual. As my sisters and I cleared the table, Grandma sat at the breakfast bar, stripping the turkey carcass for soup stock. I was so happy when the telephone rang and John said he’d be over in half an hour to pick me up.

John’s upbringing had been completely different from mine. His father had grown up on a farm in Martinez, spent two years fighting in the Philippines during World War II, returned to his job as a planning technician for Contra Costa County, and soon married Phyllis Iva Cahoon. John’s mother had already exhibited symptoms of Huntington’s. They didn’t know she had the disease, of course, but Big John’s older brother, Jack, and his wife, Faye—as well as his three older sisters, Jessica, Christina, and Alice—had tried to persuade him not to marry her. They’d all noticed her irritability, lack of enthusiasm, occasional depression, and violent outbursts. She often seemed unable to focus on a conversation or initiate one; they’d even found her talking to someone no one else