The nonfiction book I penned, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is much more than the Marin Family being challenged by Huntington’s but a story of love, commitment and devotion.
When I set out to write the memoir, my goals were to heighten Huntington’s disease (HD) awareness, honor my three (3) sisters-in-law and generate funds to donate to the nonprofit, Huntington’s Disease Society of America (HDSA). As the story unfolded, I was always brought back to one of the themes of the book, unconditional love. (other themes in the book are mindfulness and hope)
Watching Their Dance
Watching Their Dance is John and my enduring love story while living in the shadow of the HD. At the beginning of our marriage and HD journey, John and I committed that HD would not tear us apart, that our lovewould create a bond so strong that nothing could come between us.
My sister-in-law, Marcia Louise Marin, was the kindest and most unassuming woman I have ever met. After high school, in 1968, Marcia got a job in the typing pool at Pacific Telephone in the financial district of San Francisco. Marcia advanced in her job quickly to become a professional marketing rep who demonstrated to new businesses how to use their telephone system. She was a stunning, sheek, professional woman who I admired.
Unfortunately, she was struck down by Huntington’s disease (HD) at a young age, and watching her decline was very difficult for me. Needless to say, Huntington’s disease angered me for cutting Marcia’s life, her independence, her career short and leaving John, Keith, Vanessa and myself at age 49.
“Marcia was one of the sweetest people I’ve ever known. How I wish her life had been different. We supported her through the years, dealing with delicate subjects and situations. She was such a sweetheart, always giving us a look of gratitude that tugged at our hearts. I watched her with awe and wonder, because she never complained or uttered words of anger. She never cursed God for her fate and accepted her destiny.”
Setting: In my apartment during John and my college Christmas break. I leave the relationship with John Marin because I’m a coward and frightened about Huntington’s disease.
“After he finished eating, John leaned back in his chair and said, “Therese, are you okay? You hardly ate anything.” He reached for my hand, but I pulled away and went into the living room. The Christmas tree was twinkling in the corner, and I stood close to it and stared at the lights. John tried to put his arms around me, but I pushed him away.
“What’s wrong, Therese?” I felt like such a coward when I couldn’t even turn around to face him. The hurtful words I was about to say to this wonderful man were killing me, but I knew I had to say them.
John said, “I know this whole thing with Huntington’s is so unfair, and I’m so sorry. If I could make it go away, I would. But I can’t.” He took a deep breath. “Come on, Therese. Nobody knows what’s going to happen in the future. I could be killed walking down the street.”
“I know, I know,” I said faintly. “But I have to stop seeing you, John. I’m so frightened! I don’t think I’m strong enough to live with this terrible disease hanging over our heads every day of our lives.” I tried to wipe my tears on my sleeve. “I’m so confused. Why did this have to happen to us?” I covered my face with my hands and sobbed. “I’m sorry.”
John turned me around and held me as my body shook with uncontrollable sorrow. “If you need time, I’m fine with that,” he said gently. “Take as much time as you need. But don’t cut me out of your life, Therese. We can work it out.” He sighed. “Please, don’t do this to us!”
I pulled away. “John, I’m so sorry. I can’t see you anymore.” I could hardly speak. “I have to do this. Please, just go!”
I’m a Huntington’s disease (HD) advocate having lost my three (3) sisters-in-law to this horrific, genetic brain disorder with NO CURE. I published a nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s to heighten awareness, to honor my sisters-in-law and to generate dollars to be donated to the nonprofit, Huntington’s Disease Society of American (HDSA).
“Since Lora had gone into rehab, my demons had started appearing at night. With my hormones fluctuating and the lack of sleep, my resistance had been faltering ever since Keith’s birth. Now I took a deep breath, but my throat constricted and my chest tightened. How I wished I could not worry about HD until something happened, if it ever happened. Hoping to push my terror away, I crossed my arms and squeezed my body as tightly as I could. My eyes went to my sleeping angel, and I prayed. “Dear God, protect this innocent child, who deserves nothing less than all the joy in the world. I pray I have not condemned him to a life with Huntington’s. Please help me be strong.”Struggling to hold back tears, I stood at the crib and made a solemn promise to Keith. ‘I brought you into this world, my darling child, I will always be there for you, no matter what.’”
I’m currently reading a nonfiction book by David Sheff, Beautiful Boy-A Father’s journey through his son’s addiction. The book was published in 2008 and a movie was released in 2018 with Steve Carrell portraying the father. amazon.com/Beautiful-Boy
Beautiful Boy has been on my to-read list for a while. The memoir is informative about what happens when his son, Nic, falls to the use of crystal meth, heroin, crack, prescription drugs – whatever the drug the results are pretty much predictable.
After finishing chapter 4, it was clear that Sheff and I had written emotional, heart wrenching stories about the struggles of loved ones with a brain disorder. Addiction and Huntington’s disease are brain disorders, and Sheff and I wrote how the disease affects the whole family.
Watching Their Dance is a journey John and I took through Huntington’s disease; 24 years watching my three sisters-in-law through a long progressive disease process and how my family dealt with it.
I’m posting a message from Jackie MacMullan, ESPN columnist and television analyst, and a supporter of the nonprofit, Huntington’s Disease Society of America (HDSA) for many years.
Author Therese Crutcher-Marin
Jackie has published many books in her career, so as a fellow writer, I’m sending her a copy of my nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, hoping she might mention the book so more dollars can be generated from sales that I will donate to HDSA. It’s a long shot! You never know!
From Jackie: “Nearly 30 years ago, I was working in the newsroom of the Boston Globe as a sportswriter when I fielded a phone call from a woman named Mae Long. She was the executive director of the New England chapter of the Huntington’s Disease Society of America and she wanted to know if I would shoot free throws to help find a cure for the disease. Article from: https://hdsa.org/living-with-hd/faces-of-hd/meet-jackie/
I was 22 years old at the time, a recent graduate of the University of New Hampshire, where I had played four years of basketball. Shoot free throws? Sure. But what was HD? I had never heard of it. What caused it? What were the symptoms? It was a mystery to me.
I went to Mae’s hoop-a-thon, and I was in for a rude awakening. I met a number of HD patients, some whose symptoms had not yet manifested themselves, and others who were in a wheel chair, unable to speak, in the advanced stages of a disease that I learned had no cure and indiscriminately decimated families.
It was impossible to forget those patients, their families and their poignant stories. Their plight stayed with me for days, weeks, and years. Before long, I was attending events, more hoop-a-thons, even spending a year as a national spokeswoman.
Three decades later, I remain committed to the HD community and its quest to find a cure. I’ve met and lost friends with HD, watching them slip away over time with uncommon grace and dignity.
Our family has befriended Meghan Sullivan, one of the rare patients who has been afflicted with early onset of HD. Meghan is only in her 20’s, but she is already in advanced stages of the disease. That has not stopped her and her mother Cheryl from being vocal advocates for the HD community.
I will never forget the evening Meghan stood in our kitchen and calmly explained to my husband Michael and me that she planned to put a face to HD for as long as her body and mind would allow it. She had already lost her father to the disease and promised him she would raise awareness. Her courage was both heartbreaking and inspiring. Though Meghan’s symptoms have limited her, she is still fighting, still honoring her commitment to her father.
Even during this difficult time with the pandemic, I find joy and peace in reflecting upon the seven (7) year journey I conscientiously took, to write and publish a book, hoping it would soothe my soul.
Three years ago, I received at my home, the first shipment, 300, of the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. It was a surreal feeling, holding a book in my hand.
This journey helped me fight through the complicated grief that I’d been stuck in. As I wrote my story, and crafted the words on paper, it validated what John and I had lived through.
In April 2017, having healed, I could now talk about my three sisters-in-law, Lora, Marcia and Cindy who were struck down early in their lives by the insidious Huntington’s Disease, without crying.
Author Therese Crutcher-Marin Book Signing in Auburn CA
For the next several days, John and I had fun addressing approximately 30 books to mail to those who ordered a copy on my author website. I also had two local book signing events to organize; April 29 and May 7, 2017. https://www.theresecrutchermarin.com
This is the last emotional scene from the book, Watching Their Dance, when John’s three sisters tell us the family secret; their mom had Huntington’s disease.
At that time, John and I were young, 21 and 22 years old. We were both working our way through college, due to graduate in seven months and start a life together.
This news scared me, like I’ve never been scared before, and I realized this horrific disease would now relentlessly haunt the four Marin siblings. In 1978, no test was available,or therapy or cure.
Chapter 1 page 17, second paragraph:
“Stirring the ice with my fingers, 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 were back to their usual selves, but my anguish remained. I had no idea why the sisters had sought this information now. So many question 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.”
We Can Never Lose HOPE……
To read the first chapter of the book, please go to my author website, https://www.theresecrutchermarin.com and sign up to receive my weekly blog and I’ll email the first chapter to you.
Since I published in 2017, many promising clinical trials have been started around the world, so I also updated pages 306 & 307, “Huntington’s Disease Update”.
Here is an Excerpt from “Huntington’s Disease Update” page 306.
“Through the years, I have coined the statement, “Huntington’s disease is the cruelest disease on the planet”. While there is still no treatment or cure for this fatal progressive disease, the Huntington’s disease community has been blessed with good news and HOPE for a treatment has grown exponentially.
In April 2017, when I published Watching Their Dance, Ionis Pharmaceuticals, Inc. had just announced a potential treatment for Huntington’s disease; a gene-silencing program. Experts said it could be the biggest breakthrough in neurodegenerative disease in 50 years. Ionis stated they had favorable results from its 1/2a trial with the drug, IONIS-HTTRx.
HTTRx targeted the huntingtin gene that provides instruction for creating a protein called huntingtin protein. The mutated huntingtin gene expands causing abnormal CAG counts that creates a toxin protein that kills the nerve cells in the brain, which causes Huntington’s disease.
Author Therese Crutcher-Marin
To continue moving forward, Ionis partnered with Roche Pharmaceuticals to conduct the clinical trials on the drug, now called RG6042. The trial is currently being conducted at 80-90 sites in 15 countries. There are 660 patients with early symptoms of Huntington’s disease enrolled in the study.”