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#WatchingTheirDance

A Love Story, Watching Their Dance

It’s Not Just A Story About A Family Challenged by Huntington’s

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 love would create a bond so strong that nothing could come between us.

We Can Never Lose Hope…           

theresecrutchermarin.com, is an Author and Huntington’s Disease Advocate website. Go here to read and sign up for my weekly blogs

July 19, 2023 by
A Love Story, About Author

Huntington’s Disease

Once upon a time, in the land of uncertainty, there was a young college girl who tried to control every aspect of her life; she lacked spontaneity, felt uncomfortable without a plan, so she always had a plan and a backup plan in case the first plan failed.  In other words, she was a control freak.

Until her senior year in college, Therese had been successful living her life in this manner.  Her prince, John Marin, entered her life in her sophomore year and she fell irrevocably in love with him and planned a life together after college. 

Huntington’s Disease

Then a cruel, frightening, uncontrollable, despicable, incurable monster entered her life; its name was Huntington’s disease (HD) and John and his three sisters were at risk for inheriting the disease. 

Huntington’s disease was not to be controlled so Therese planned to not let Huntington’s disease control her.  She married her prince even though his future is precarious.  It’s not to say it was easy but over time HD offered her lessons that gave her a sense of control; incorporating mindfulness and forgiveness into her life, having HOPE, not taking anything for granted, cherishing John and their life, not sweating the small stuff. 

In 2016, in the land of uncertainty, the prince tests negative for HD and Therese writes their love story living in the shadow of HD. 

We Can Never Lose Hope…….

Author Therese Crutcher-Marin

I’m a Huntington’s disease (HD) advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  Visit my website and learn about HD:  https://theresecrutchermarin.com

 

 

December 7, 2022 by
About Author

Always On My Mind

Author Therese Crutcher-Marin

I have to confess something I’ve never admitted to anyone besides myself.  I don’t know if it’s a woman thing or what, or that my life was drastically altered when I consciously made a decision to love a man with an unknown gene status for Huntington’s disease (HD).

A day never goes by, since November 1978, that Huntington’s disease isn’t in the forefront of my mind. (John and his three (3) sisters discovered their mother had HD)  It’s crazy because John tested negative in 2016 and knowing the cruelest disease cannot destroy my family like it did to John’s family, his mother, three (3) sisters, aunts & uncles, HD still lingers in my thoughts.

Over the past few years, I’ve thought about it and decided, the grief I carry in my heart for my three (3) sisters-in-law who died from HD complications, will always be with me.  That’s why HD never leaves my mind.  At this time in my life, I now consider it a good thing because it drives me to help families struggling with the disease and focuses my energy in helping others.  The work I do for the HD community also quiets my mind and soothes my soul.

                                 We Can Never Lose Hope…

I’m a Huntington’s disease (HD) advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  Visit my website and learn about HD and :  https://theresecrutchermarin.com

 

 

March 30, 2022 by
Hospice

Hospice and Huntington’s Disease

Author Therese Crutcher-Marin, HD Advocate

November is National Hospice and Palliative Month   

Since I worked in hospice for the last ten (10) years of my career, each year I  like to promote it as the greatest gift you can give to your loved one and family when confronted with a terminal diagnosis.

Hospice is a special kind of care when all treatments have been exhausted for an individual with a terminal diagnosis.  Hospice provides comfort care, usually in a home, and the unit of care is the  family and patient.  A doctor referral is needed to open a patient to hospice services. 

Hospice programs also care for terminally ill patients in skilled nursing facilities, residential care facilities (RCFE) and assisted living facilities.  My two sisters-in-law, Marcia and Cindy, were in a RCFE, ten (10) years apart, and were cared for by my hospice program.  

When a person with Huntington’s disease (HD) enters end stage, hospice can bring comfort and relief: HD is a rare, fatal, genetic brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimers at the same time.  There is no cure.

We Can Never Lose HOPE……

 

I’m a Huntington’s disease (HD) advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  Visit my website and learn about HD:  https://theresecrutchermarin.com

 

 

 

 

November 16, 2021 by
Love

A Healing Exercise

Author Therese Crutcher-Marin, HD Advocate

Good morning,

I’m Therese Crutcher-Marin, Huntington’s Disease Advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.

Since I published, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, many people have asked me “Why did you decide to write a book?”  My reply was, “The motive was purely selfish as I was searching for a way to heal from the loss of my three sisters-in-law to the cruelest disease on the planet; Huntington’s disease” (HD).  As I wrote my story, I came to realize that my story would heighten HD awareness, honor my three sisters-in-law and generate dollars to donate to the nonprofit, Huntington’s Disease Society of America to help in the fight against HD.

Articles:  The Healing Power of Telling Your Story

&   Writing About Emotions May Ease Stress and Trauma  

In 2008, Cindy, my third sister-in-law passed away from HD and in 2010, I began writing my story.  A counselor I’d seen for years suggested I write my story as a way to heal.

Seven (7) years later, in 2017, I held a book in my hands and could honestly say, “the process of writing my story, validated what I had gone through, and allowed me to move the grief I harbored to the pages of the book; so, yes, I have healed.”

We Can Never Lose HOPE……

 

 

 

 

September 28, 2021 by
Love

Remembering LoraLee (Marin) Harbin

Today, July 15th, is Loralee (Marin) Harbin’s, my dear sister-in-law, birthday. As a Rememberer, I write this blog to honor her and for the world to know what a loss she was to our family and friends.

Lora was taken from the Marin family at a young age of 41.  Lora had Huntington’s disease as did her mother, Phyllis (Cahoon) Marin.  I am blessed to have had her in my life for 12 years, and unfortunately, my children were too young to have known this wonderful aunt of theirs.

A light radiated from Lora and her smile made them everyone she came in contact with comfortable.  She was the kindest, most giving, loving person I have ever known.

 

  Happy Birthday, Lora……………John, Keith, Vanessa and I miss you and you will live forever in our hearts.

                                           We Can Never Lose HOPE………

I’m a Huntington’s disease advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  Visit my website:  https://theresecrutchermarin.com

Please make a donation to the nonprofit, Huntington’s Disease Society of America, to help fight HD.

 

 

 

 

 

July 15, 2021 by
2017 Book Tour

A Book Tour That Turned Into An Inspirational Journey

Four (4) years to the day, John and I took off on a book tour, in our RV, to promote the nonfiction book I had just published,Watching Their Dance:  Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.

Before we headed East on I80, I had mapped out nine (9) Huntington’s Disease Society of America (HDSA) Team Hope Walks, in the Midwest, that we could attend over a period of three (3) months.  I had talked to the coordinator of each Walk, to make sure it was ok, and was welcomed with open arms. When the walk was concluded, I calculated the proceeds from books sold that day, and wrote a check to the HDSA Chapter/Affiliate hosting the event.

After each Walk, my heart was filled with hope and love, and I was inspired by the strength I witnessed in the HD families I had the honor to meet.

In every book I sold, I wrote, We Can Never Lose HOPE….

Visit my Author/HD Advocate Website

 

 

June 1, 2021 by
Watching Their Dance

Watching Their Dance and Beautiful Boy-Memoirs Written With Strong Emotion

Author Therese Crutcher-Marin

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.

amazon.com/Watching-Their-Dance

We Can Never Lose HOPE………………

 

September 9, 2020 by
Hope

Fighting Fear With HOPE

Author Therese Crutcher-Marin, HD Advocate

Last week I wrote how I almost didn’t follow my heart and marry the love of my life, John Marin, because I was scared, fearful that Huntington’s disease would attack him and slowly steal him away from me.  What-is-huntingtons-disease

At that time, I didn’t think I was strong enough or brave enough to live with an enormous uncertainty in my life forever or until there was a cure for Huntington’s disease.  Fear held me hostage and blinded me of the strength’s I possessed; I am resilient, persistent, empathetic, strong, caring, kind and irrevocably in love with John.

Articles on overcoming Fear:    jackcanfield.com/blog/overcoming-fear/

powerofpositivity.com/overcome-biggest-fears/

After I experienced an epiphany, a moment of sudden or great revelation that  changed me, I was lead back into his arms.  It was then that I decided to fight fear with HOPE. 

We Can Never Lose HOPE……..

 

 

 

 

July 15, 2020 by
Love

My Heart Was In The Lost and Found

 

Boz Scaggs is John and my artist, a talented musician popular in the 1970’s.  Whenever I hear a Boz song, I’m taken back to college and to my then boyfriend, John Marin, before the Marin secret was revealed. artist boz-scaggs biography

Boz Scaggs song, Look What You’ve Done To Me, breaks my heart when I hear it.  Click here to listen to it:  https://youtu.be/hWrbelCfMvc

As I look at the pictures of my life with John through the years, my heart skips a beat because I almost didn’t live that life.  When Huntington’s disease (HD) suddenly entered our life, it scared me to death and I questioned whether our LOVE would be enough? What is HD?

Out of fear, I left the relationship and my heart lived in the Lost and Found. For the next seven months, I did a lot of soul-searching and my emotions were all over the place.  I was young and didn’t have many life experiences to shore up my doubts.

John eventually found my heart in the Lost and Found just as I discovered LOVE would get us through the years and if he got sick, I’d be there to care for him.  That’s what you do for the people that you LOVE.

I’m grateful every day that I have had with John, the LOVE of my  life, who is healthy, and thankful for his negative test for the mutated Huntingtin gene.  Sometimes you just have to take a chance and listen to your heart.  What is Huntington’s disease

HDSA 2019 Convention

Article on goodtherapy-love         7-ways-to-deal-with-uncertainty/

We Can Never Lose HOPE…

To read for the first chapter of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, go to my author website and sign up for my weekly blog. I’ll email you the 1st Chapter  https://theresecrutchermarin.com

July 8, 2020 by