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

Huntington's Disease

Part 2-Interview with Dawn Landau-Blogger on the Huffington Post

In Honor of Huntington’s Disease Awareness Month: a new book about love, fear, and living with HD

Therese Crutcher-Marin went into her marriage knowing that HD was a risk. In fact, she ran toward it, for love. At a time when there were no tests for HD, she embraced the man she loved and hoped for the best. Her new book looks at that decision, and it’s enormous impact.

I wanted to know more, and Therese agreed to be interviewed, for Huntington’s Disease Awareness Month. We both wanted to have this interview come out much earlier in May, to honor and bring awareness to the illness, but two busy schedules made that difficult. In the end, we both agreed that for those of us living with Huntington’s, EVERY month is Huntington’s Disease Awareness month! Purple and blue are the colors for HD. Wear them for someone you love, who is fighting this devastating disease.

Tell us how you first learned about Huntington’s Disease.

In 1978, John Marin, my college sweetheart, and I were graduating from college and planned to be married. His three older sisters, Lora, Marcia and Cindy, who had become my close friends, couldn’t explain to me why their mother had been in Napa State Hospital for 20 years. They asked their father but he would not tell them. The sisters contacted an aunt on their mother’s side of the family, whom they hadn’t seen in years, and on November 3, 1978, the Marin secret was revealed to us. Phyllis, their mother, had Huntington’s disease

Did your husband have a history of HD in his family, prior to that?

Their mother’s side of the family had a history of HD but their father knew nothing about it when he married Phyllis.

To be continued…………….

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

Therese is the author of Watching Their Dance: Three Sisters, a Genetic  Disease and Marrying into a Family At Risk for Huntington’s.  It’s available on her author website:  http://www.theresecrutchermarin.com  

100% of the proceeds is being donated to Huntington’s disease organizations around the world.

 

Huntington's Disease

Interview with Dawn Landau-Blogger on the Huffington Post

In Honor of Huntington’s Disease Awareness Month: a new book about love, fear, and living with HD

I don’t post on this blog enough; anyone who follows here, knows that. As I’ve noted in the past, fear keeps me away. If I hide my eyes, maybe it will go away? It, being Huntington’s Disease.

My family was blindsided by HD. My grandmother was a powerhouse and true icon in the world of Massachusetts’ realtors, for more than two decades. She was named top realtor in the state of Massachusetts, for the top real estate company in the state, for sixteen years! This, at a time when women were still making their way into this area of business. I grew up enormously proud of her, and hugely impacted by her. She helped raise me, and was the solid person in my life. She taught me to shake hands firmly, to make a mean pumpkin chiffon pie, and to be kind to others. I think we all both adored and feared her… she was a huge presence in our family and the community.

When she started tripping, while showing houses; walking strangely; forgetting things she’d always remembered, and a myriad of other strange changes, everyone assumed she’d developed a drinking problem. Family and friends urged me to look for drugs and alcohol, they all believed she was hiding, when I spent summers living with her, during college. I found nothing, and she grew worse.

When my grandmother was finally diagnosed with Huntington’s, our entire family went into denial. We didn’t know what it was. We were overwhelmed with the idea that anyone or anything could impact my grandmother in such a way, and none of us believed it would impact us too. We were an entire family of ostriches–– even after the hard reality of watching Grandma sink into herself, and eventually die of HD. We stayed paralyzed as my mother was diagnosed, but took more notice. By the time my forty-nine year old aunt died (my mother’s younger sister), after only a short nine months with rapid symptoms, we all were terrified. My mother’s illness was prolonged and horrible to watch. My younger sister is living with HD.

A few months ago Therese Crutcher-Marin read one of my posts here on the Huntington’s Chronicles, and contacted me. She has written a powerful new book, Watching Their Dance: Three Sisters, A Genetic Disease, and Marrying Into a Family At Risk For Huntington’s (buy here). The book looks at her husband’s family history with HD. It begins before there was testing–– when love was a leap of faith, and brings us to the present. Anyone dealing with this horrific disease may benefit from reading her book.

Interview to be continued on my next blog.

We can never lose HOPE……………..Therese

http://www.theresecrutchermarin.com   

Therese-Author

The Start of our Journey

Yesterday, John and I began our journey to the Midwest, it’s my first book tour, and as we drove away from Auburn, John and I were a little nervous, having never done this before.  In our new RV and pulling a car, we climbed up and over the Sierra’s mountain range and as we dropped down into Reno Nevada, we breathed a little easier because it didn’t snow on us as it was predicted to do.

As the miles slipped by, we  smiled at each other and our hearts became light and our anxiousness melted away.  I sang “On the road again” as I usually do when we start a road trip.  I only know those four words but it kicked off our adventure. Even though driving through Nevada is pretty boring, it was a good day and we are enjoying the journey because there is beauty in every direction.

Therese is the author of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. The book can be purchased on her author website and Amazon.     http://www.theresecrutchermarin.com    

We Can Never Lose Hope…………….Therese

About Author

Fulfilling a Dream

I’m the sort of person who perseveres, never gives up, and will finish a project no matter what the cost. So when I decided to write my story, I planned and planned, I have Obsessive Compulsive Disorder (OCD), and by sticking to my plan, I successfully published, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s on April 1, 2017.  It truly was a dream come true. Though, I must tell you, it took seven years to finally hold a book in my hand, and I would do it all over again, and will, as I’m working on a historical fiction novel with a sequel.

So, if you have a dream, here is the first step in achieving/fulfilling your dream:

Believe it is achievable. Unfortunately, too many people will never accomplish their dreams because they simply refuse to believe in themselves. Optimism is absolutely required for dream fulfillment and life enjoyment. If you don’t have natural self-confidence, make finding it your first dream to accomplish.  http://www.becomingminimalist.com/how-to-fulfill-dreams-thoughts-on-an-ebooks-anniversary/

Dreams come in all shapes and sizes.  My dream was to write an inspirational story that offered lessons to readers, and publish the story in a book that would live beyond my lifetime.

What is your dream? I encourage you to not let your dream die; just go for it and make it a reality.  You’ll never regret it and it will be an achievement you’ll be proud of the rest of your life!

Therese’s author website is:  http://www.theresecrutchermarin.com

We can never lose HOPE……………………Therese

Love

Excerpt from Watching Their Dance Chapter 11

John and I had been married for almost two years, and when we began talking about buying a house, the usual insecurities popped up in my brain. What if John gets sick? Could I make the mortgage payments on my salary? Could I maintain the house by myself? I pushed those thoughts away and replaced them with more reasonable questions: You’ve always wanted your own home, haven’t you? You don’t want to pay rent for the rest of your life, do you?

We agreed it was the right time to make this investment in our future. We both had good jobs, and buying a home was in the normal progression for couples building a life together. Of course, most happily married couples never doubt they have a future.

One day, John, who by then had come to know Placer County well, came home full of excitement. “I found a house for us, Therese! It’s in Loomis, a fixer-upper, but it has real potential. I can’t wait for you to see it.”  https://en.wikipedia.org/wiki/Placer_County,_California

Since he had studied architecture and worked in construction during summer breaks from college, I trusted his ability to see past what was there and visualize what it could become. Loomis, a rural area nestled in the foothills of the Sierra Nevada, was about thirty minutes east of Sacramento along the Interstate 80 corridor. It was said to be a friendly, old-fashioned community.

The night before we went to look at the house, I lay in John’s arms, delighting in his enthusiasm as he described the place once more. “The house sits on an acre, with a well, a septic system, and a pool! It has three bedrooms and two bathrooms, and the original garage has been converted into a family room, but there’s enough land for us to build a three-car garage.” John’s voice faded as I dreamed of verdant pastureland, cows grazing lazily outside the kitchen window.

I left work early to meet John and our realtor, Bonda Robinson. I couldn’t get past the magnitude of the decision, and the terrible questions nagging at me. The old anxiety pushed hard against any optimism I could muster. To calm my fears, I did what I always did: develop a plan. Since I managed our finances, I would be as thrifty as possible and save as much as I could.

Therese is the author of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. To purchase the book, please visit her author website:  http://www.theresecrutchermarin.com  100% of the proceeds from the book are being donated to Huntington’s disease organizations around the world.

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

About Author, Hope

First Leg of Therese’s Book Tour

Last January John and I began discussing the possibility of a book tour but it didn’t go too far until Huntington’s Disease Society of America (HDSA) agreed to allow me to promote my book at their 3-day National Convention in Chicago in June. Now, we are less than a month of leaving, so we’re busy packing our new RV to visit states and places we have never been to before.

Leaving California for three months is somewhat daunting but we did it in 2010 in our 5th wheel. On that trip, we visited family and friends on our way to Virginia, where my older sister, Ellen, lives.  From Virginia we headed to  the Outer Banks in North Carolina, saw Kitty Hawk and then drove south through Georgia, Texas and on to San Diego to see our daughter Vanessa at C.S.U., San Diego before heading back to Northern California.

This trip will focus on attending events to heighten awareness of Huntington’s disease and I hope to sell many books, because the more books I sell, the more money I can donate to HDSA. We’ll also be exploring the beautiful places in each of the states we visit.

Here is what’s planned the first month of the trip:  Yippee!!!!

1st stop-Shawnee Kansas where my Aunt Trina, Aunt Nancy and cousins live.  On June 17, John, some of my relatives and myself will participate in the Lenexa Kansas HDSA Team HOPE Walk.  I will also promote my book.  If you live in the area, please sign up to support this worthy cause.  https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1083

June 19 & 20-LeClaire, Iowa. Visit the store of TV show American Pickers.  http://www.antiquearchaeology.com/locations.php We love the show!

 

June 22-Schaumburg, Illinois. HDSA National Convention. I will participate in HDSA Leadership Day representing Northern California Chapter Board of Directors.

June 23, 24, 25-Schaumburg, Illinois. HDSA National Convention.The HDSA Convention is the world’s largest Huntington’s disease family event bringing together the best of education, advocacy and research to create three days of family-focused learning for the Huntington’s disease community.  I hope to meet many of my Facebook friends and, of course, promote my book.  http://hdsa.org/about-hdsa/annual-convention/

Tour Chicago area and spend a few days in Michigan.

To purchase Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, please click here:  http://www.theresecrutchermarin.com   100% of the proceeds is being donated to HDSA to help in the fight against Huntington’s disease.

We can never lose HOPE…………Therese

 

 

Love

Free 1st Chapter of “Watching Their Dance”

If you’re searching for a touching love story for your summer reading, check out my offer to receive the first chapter of my book FREE. Today is the last day to receive this FREE offer.  If the first chapter captures your interest, you can  purchase the book on my author website below.

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.  I share how my marriage was actually fortified by its precariousness; my husband had a 50/50 chance of inheriting the cruelest disease on the planet, Huntington’s disease.  Knowing my life could change overnight, I learned to love more deeply in the shadow of my husband’s mortality.

To receive the first chapter, please sign up for my blog below and I’ll email the chapter to you:

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We can never lose HOPE………………..Therese

Therese’s is currently writing a historical fiction novel about a young girl in the 1920’s whose Austrian immigrant family is trying to survive in Ottawa Kansas with thirteen children. To read more about it, please go to  http://www.theresecrutchermarin.com

100% of the proceeds from Watching Their Dance is being donated to Huntington’s disease organizations around the world.

 

 

Family

Memorial Day in the U.S.

I have fond memories of the holidays when I was growing up in Shawnee Mission, Kansas, in the 1960’s with my aunts, uncles, cousins, Grandmother McKibben and my Grandmother and Grandfather Crutcher.  We lived not too far from each other so every holiday, and some vacations, were spent together.

One of my most vivid memories was the holiday of Memorial Day; for us kids it was the beginning of summer. Mom and Dad would pack my sisters, Ellen, Julie, Jennifer and myself in our big old Chevrolet and head to the Catholic cemetery where Mass would be celebrated.  After decorating the graves of our relatives with American flags and flowers, the family would spend the rest of the day together, usually at Aunt Mary and Uncle Bill’s home, since they had several acres where all the kids could run around.  Mom, Aunt Mary, and Aunt Nancy would call us for dinner and we’d have fried chicken, potato salad, soda pop, green beans, homemade biscuits with jam and, of course, cake with ice cream .

When I was searching for information on Memorial Day, I learned Decoration Day was the precursor of Memorial Day, and was first observed in 1868, following the carnage of the Civil War.

In early May 1868 the Grand Army of the Republic, a nationwide group of veterans of the Union Army, called for a day to remember those who had died in the war.

The Meaning of Memorial Day, From the Civil War On.   http://dailysignal.com/2017/05/26/meaning-memorial-day-civil-war/

Have a wonderful holiday…………..Therese

Therese is the author of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. You can purchase the book on her author website:  http://www.theresecrutchermarin.com