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Watching Their Dance

Watching Their Dance

Watching Their Dance-Excerpt from Ch. 16

In Chapter 16 of my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, I write about  a very stressful time; my maternity time was up and I went back to work leaving my baby for the first time since he was born.  And, my second sister-in-law, Marcia, the quiet, brave, professional sister visited from New Jersey for Christmas and the HD symptoms were hard to miss.  Except for the Marin siblings who ignored hard stuff until it came to a head. 

Chapter 16-The Accident Buy book

“With the busy lives we led, it wasn’t hard to shove Huntington’s to the back of my mind. At the same time, I consciously had to stop my forward momentum and take time to be thankful for the life John and I had. Hassles at work or the refrigerator giving out or Keith cranky with an ear infection—these were small, petty distractions I didn’t let upset me. John was healthy, not showing a sign of Huntington’s Disease, and our child had brought a joy to our lives I’d never experienced before. My heart was bursting with the love I felt for my two favorite boys.

That Christmas, Cindy and Brad stayed in Canada, but Marcia flew in for the holidays. She looked a little thinner, and she was wearing shoes without heels, which was uncharacteristic of her. Both she and Lora were barely five-foot-one, and both had always worn really high heels.”

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a nonfiction/memoir, can be purchased on Therese’s author website    Amazon  B&N  & in Kindle, Kobo, Nook, and iBooks format.

We can never lose Hope………………..Therese

Watching Their Dance

“Watching Their Dance” and Goodreads

Early in September 2017, after returning home from our 3-month book tour, I was updating my Goodreads Author Profile when I found this wonderful review on my book, Watching Their Dance. I was in shock because I had not submitted it.  My publicist said they reviewed it because I ran a “Goodreads Giveaway” last May, where I gave away 10 books. 817 people signed up for the event and Goodreads drew the 10 names.

I’m thrilled with the review to say the least. Goodreads 

The last statement of the review says:  ‘While you will learn a great deal about Huntington’s Disease along the way, this book has much to offer beyond the boundaries of any disease.” by Jazz Jaeschke for Story Circle Book Reviews, reviewing books by, for, and about women.

To read the complete review: click on this link:  https://www.goodreads.com/review/show/2094596155

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle,Kobo, Nook, iBooks format.

 

We can never lose HOPE…………Therese

Watching Their Dance

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

Continued from August 31 blog   http://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. http://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:      http://theresecrutchermarin.com/     

We can never lose HOPE…………………Therese

Survival, Watching Their Dance

How I Lived with the Uncertainty of Huntington’s Disease

Mr. Anthony Jay Robbins said, “The quality of your life is in direct proportion to the amount of uncertainty you can comfortably deal with.”  Tony is an American Multi-level marketing advocate, businessman, and author. He became well-known for his infomercials and self-help books: Unlimited Power, Unleash the Power Within and Awaken the Giant.  https://www.tonyrobbins.com/biography/

Certainty is almost always preferable to uncertainty because we humans like to know!  It was critical for me to know the who, what, where, when and why in my life because being in control calmed my Obsessive Compulsive Disorder (OCD) symptoms. Being out of control threw me into a uncertainty-induced anxiety.

In 1978, the Huntington’s disease (HD) monster was introduced into my life.  John, the love of my life, had an unknown gene status for this fatal, genetic disorder that progressively destroyed the nerve cells in the brain. At that time, I was forced to decide if I could live with this huge unknown factor in my life (uncertainty), and if I did choose that path, could I live happily and not be a basket case.

When I decided to marry John, I realized I had to adapt to a life of uncertainty; change my way of thinking, learn to focus on the positive, find ways not to worry about the future.  So, I began searching for something reliable to grab ahold of.  I discovered four (4) strategies to embrace to make uncertainty bearable.

  1.  Know that you’re not seeing every option. This was hard because I only saw two options:  John had the mutated gene or he didn’t.  So, I slowed down and reminded myself that there are options that I couldn’t possible see immediately.  I told myself, just because I don’t see them doesn’t mean they aren’t there. And sure enough, with time, I found one way to cope through MINDFULNESS.   “Mindfulness is the aware, balanced acceptance of the present experience. It isn’t more complicated than that. It is opening to or receiving the present moment, pleasant or unpleasant, just as it is, without either clinging to it or rejecting it.” ~Sylvia Boorstein    https://www.psychologytoday.com/basics/mindfulness  

In my next blog, I will continue to discuss the ways I dealt with unimaginable uncertainty for 38 years.

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

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is a poignant remembrance of a love forged in crisis. To purchase the book, go to:   http://www.theresecrutchermarin.com  100% of the proceeds from the book are being donated to Huntington’s organizations around the world.

 

 

 

 

 

 

 

 

 

Photo credit: One Way Stock via Foter.com / CC BY-ND & Photo credit: DES Daughter via Foter.com / CC BY-NC-SA

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, http://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