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.
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.
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.
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.
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.
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.”
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.
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….
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.
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.
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
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 LOVEwould 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 LOVEwould 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
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