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Watching Their Dance

Watching Their Dance

“Watching Their Dance”……….An Inspirational Story

Continued from August 31 blog   https://theresecrutchermarin.com/new-blog-page/  

In my last blog, I wrote that the Huntington’s Disease Community is the first audience I chose to promote Watching Their Dance to because of the subject matter (Huntington’s disease). Since I’m donating 100% of the proceeds from the book to Huntington’s disease organizations around the world, the HD community has been very supportive, and I will continue to connect with them for years to come.

The second audience I believe would enjoy Watching Their Dance are readers of inspirational stories. Kirkus Reviews said this about the book, “This is a story more about the power of hope than the wages of Huntington’s. Crutcher-Marin writes affectingly about the way her marriage was actually fortified by its precariousness—she learned to love more deeply in the shadow of her husband’s mortality.”   https://www.kirkusreviews.com/book-reviews/unknown/watching-their-dance/   

Here are a few books I’ve read that are inspirational (in my opinion):

Breaking Night: The Liz Murray Story     https://www.goodreads.com/book/show/1432370.Breaking_Night 

The Climb of my Life: Scaling Mountains with a Borrowed Heart by Kelly Perkins                 https://www.goodreads.com/book/show/2102248.The_Climb_of_My_Life 

Brain on Fire: My Month of Madness by Susannah Cahalan                             https://www.goodreads.com/book/show/13547180-brain-on-fire?ac=1&from_search=true  

Glass Castle by Jeannette Walls   https://www.goodreads.com/book/photo/7445.The_Glass_Castle 

Tuesdays with Morrie by Mitch Albom           https://www.goodreads.com/book/show/6900.Tuesdays_with_Morrie  

                 

We can never lose HOPE……………..Therese 

To purchase Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a memoir/nonfiction book, please visit my author website if you’re in the U.S. https://www.theresecrutchermarin.com

Outside the U.S., you can find it on Amazon and other book websites. It’s available as a Kindle, Nook, iBooks, and Kobo file.

 

Hope, Watching Their Dance

A Review Every Author Dreams of Receiving

KIRKUS REVIEW

A debut memoir focuses on a family wrestling with the genetic legacy of Huntington’s disease.

Crutcher-Marin met her future husband in 1976 while they both attended junior college in California—it took no time for her to be captivated by him. Then, a few weeks before Thanksgiving, John’s three sisters called a meeting and revealed that while visiting an aunt they discovered the family was plagued by Huntington’s disease, a debilitating neurological disorder. John’s mother, Phyllis, and three of her siblings—four out of six overall—suffered from it. The odds that John would eventually come down with it were about 1 in 2, and there was neither a test to definitively diagnose it nor a cure to combat it. When the author met John he was 21 years old, and, generally, the symptoms start to appear between the ages of 30 and 45. Overwhelmed by the prospect that such uncertainty would forever haunt their lives, Crutcher-Marin reluctantly left John, a move encouraged by her own family. She even briefly dated someone else. But she couldn’t bear the separation and eventually returned to his embrace; they wed in 1980 and had a child. But the threat continued to loom over them like a storm cloud, and two of John’s siblings did eventually grapple with, and die from, the terrible affliction.

To read the full Kirkus Review see:      https://www.kirkusreviews.com/book-reviews/unknown/watching-their-dance/     

To purchase Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, please visit:      https://theresecrutchermarin.com/     

We can never lose HOPE…………………Therese

Marketing, Watching Their Dance

Amazon Reaches Readers Around the World

 

Promoting my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, around the world just made sense because Huntington’s disease affects approximately 4 million people worldwide. Because Amazon operates 11 online marketplaces (websites) I can offer the book internationally.

For example, when my book is purchased on Amazon Canada  https://www.amazon.ca/  I will donate my profit/ royalties to the Huntington’s Society of Canada.  It really doesn’t make a difference to me who I donate to because all the HD organizations around the world have the same goal: Help families dealing with Huntington’s disease and contribute to research.

So, if you live outside the U.S., please go to an Amazon website to purchase the book, and I’ll donate $3.50 to a non-profit HD organization in the country where you live.

If you live in the U.S., please go to my author website, https://theresecrutchermarin.com/  to purchase it and I will donate $7.00 to HDSA.   Thank you!

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We Can Never Lose HOPE…………..  Therese

Photo credit: topgold via Foter.com / CC BY

Watching Their Dance

Book Signing Event in San Francisco

For those of you who live in the San Francisco Bay Area, I invite you to my book signing event for Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s at Book Passage Book Store at 7 pm this Sunday, May 7.  http://www.bookpassage.com/  You can purchase my book at Book Passage.

I’ll be celebrating two things: First, the publishing of the book, and second, the kickoff of the fundraising/HD awareness component of the book. 100% of the proceeds from the book is being donated to Huntington’s disease organizations around the world.

Come and enjoy a glass or wine and chocolates and celebrate with John, Keith, Fran, Vanessa, Scott and myself.  Several years ago I joined a unique writer program offered by Book Passage, Path to Publishing, that helps aspiring authors through the publishing process. Through this program I connected with Pam Feinsilber, editor, and Jim Shubin, book alchemist, both highly talented professionals that helped me create a well written, beautiful book.  You can find me in Book Passage May, June newsletter.  https://drive.google.com/file/d/0B1y-paGxRo-_MVRtVXU4Q1dKTTg/view

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Have a good day!  Therese

Watching Their Dance

Therese’s Book Signing Event In Auburn CA

Thank you to all the folks, friends and family, who attended my first Book Signing Event here in my hometown of Auburn CA.  I appreciate your support of my fundraising/Huntington’s Disease Awareness project. Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.

We can never lose HOPE…………………….Therese

 

Watching Their Dance

Excerpt from Chapter 3-The Neurologist Visit

That night as I lay in bed, I evaluated my strengths and weaknesses, ticking off the boxes one by one: hardworking, caring, compassionate, determined, empathetic, organized, responsible, honest, kind, deeply loving, a person of integrity. But I couldn’t tick off one important adjective—brave—because I wasn’t sure I could muster the courage to have Huntington’s in my life.

When I thought of my weaknesses, having Obsessive-Compulsive Disorder, or OCD, said it all. None of us likes uncertainty, but in people with anxiety disorders, the least bit of uncertainty creates intrusive thoughts that cause uneasiness, apprehension, worry, and fear. It seemed to have ramped up in my family over the last three generations. I had wrestled with this demon for years, always needing to know what, when, what time, who with, for how long. To be able to move through life, I had developed a strategy for any situation: find out everything I could, always be prepared, and plan and plan again.

It was exhausting, but the alternative to being in control as much as possible was too frightening. Balancing my checkbook to the penny, mapping my route to every single place I drove or walked, outlining every facet of my college life, with a backup plan just in case—anticipating every possible outcome to anything is what kept my demons at bay.

This frightening new factor in my life was a far bigger challenge than not knowing how much I had left in my checking account. I saw three possible options for dealing with it: trying to control the possibility of Huntington’s; removing the ambiguity from my life; or finding the courage to live with it. There was no way to control when the disease might manifest, and I doubted I could bear the uncertainty, especially since I had been conditioned to feel pessimistic before any positive emotion. I really saw just one option. I tried concentrating on the fact that John had a fifty percent chance of not inheriting the disease, but unlike the Marins, I couldn’t find any comfort in that statistic.

The thought of turning my back on the man I loved because he might develop a horrific disease seemed selfish and cruel. But the fear was more than I could take, and hope was not enough to calm my terror.

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We Can Never Lose HOPE………………..Therese

Watching Their Dance

Enter and Win a Goodreads Book Giveaway

Goodreads Book Giveaway

Watching Their Dance by Therese Crutcher-Marin

Watching Their Dance

by Therese Crutcher-Marin

Giveaway ends May 19, 2017.

See the giveaway details
at Goodreads.

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We can never lose HOPE……………………….Therese

Watching Their Dance

Excerpt from 2nd Chapter-Huntington’s disease

The following is an  excerpt from the second chapter of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.  I hope you enjoy it and will join me in this fundraising project to help families struggling with HD.  

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 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 (John’s mother) 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.

The book is available to U.S. residents, on my Author Website:  https://theresecrutchermarin.com/ 

Outside U.S., please visit the Amazon website in your country.   UK-https://www.amazon.co.uk/ France–  https://www.amazon.fr/    Italy–  https://www.amazon.it/   Germany–  https://www.amazon.de/  Spain–  https://www.amazon.es/   Canada–  https://www.amazon.ca/

100% of the profits from my book is being donated to Huntington’s organizations around the world.  

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Have a wonderful day!    Therese

 

 

Watching Their Dance

Excerpt from First Chapter

Excerpt from 1st Chapter of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s

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.”

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Have a good day!  Therese