In 2016, after John tested negative for the mutated huntingtin gene that causes the cruelest disease on the planet, Huntington’s disease (HD), I thought a lot about “WHAT IF“.
In 1978, when the four Marin siblings discovered they had a 50/50 chance of inheriting HD, I was so scared I broke off the relationship with John. Luckily, I was lead back to John by an epiphany. What is Huntington’s disease
“What If” I hadn’t found my way back to John? I would have lost so much and paid a heavy price. Guilt would have been tattooed on my heart forever for walking away from my soulmate, my true love, a man who had never hurt me. I would have felt ashamed for not being strong and I would never have known three wonderful women, my sisters-in-law, Lora, Marcia and Cindy. Also, I would have missed out on knowing the two most important people in my world today; our children Keith and Vanessa.
My advice is to LISTEN TO YOUR HEART……….
We Can Never Lose Hope………….
Watching Their Dance is John’s and my love story while living in the shadow of Huntington’s Disease. I share the tools I found in life to live happily, even with the losses we experienced, with this huge uncertainty looming over us. The themes of my book are mindfulness, forgiveness, hope and love.
The huge uncertainty I chose to live with, John had an unknown gene status for Huntington’s disease (HD), the cruelest disease on the planet, caused a huge CHANGE in my life. His 50/50 chance of inheriting this rare, fatal, incurable brain disorder that is like having ALS, Parkinson’s and Alzheimers symptoms at the same time taught me to live in the moment, to live mindfully, which enriched my life.
Through the years, my heart opened up to forgive more easily which lead to loving unconditionally. Even with the sadness John and I experienced, my three sisters-in-law died of complications from HD, made me appreciate and be grateful for everything I had in my life.
Therese is the author of the nonfiction, Watching Their Dance, an inspirational love story while living in the shadow of Huntington’s disease. Therese has received four excellent book reviews from Kirkus, Goodreads, BookLife and Stanford University. To read the reviews, go to: https://theresecrutchermarin.com/goodreads-review/
“I was ecstatic that John and I were finally living under the same roof. Our split-level apartment had two bedrooms, one bathroom, a cute kitchen with a bay window that my coleuses loved. Upstairs was a dining area and a sunken living room with a stone fireplace; a sliding-glass door opened onto a little balcony that overlooked a creek.
Anyone looking at us would have seen a happy, well-matched couple starting what seemed a wonderful life together. Little would they know the challenge that lay quietly beneath our joy. Every day, I consciously reminded myself to live in the present moment. It was the small stuff I savored: waking up next to John, seeing him every night, eating dinner together, talking about our day, feeling his arms around me. Those moments were precious, and I selfishly saved them just for me.”
Finding your passion, and acting on it, I believe, is important to one’s happiness. Maybe it’s painting, writing, running, mentoring young people, teaching, helping the homeless, delivering meals to the elderly, volunteering for a your favorite charity, rescuing animals; anything that makes your heart and soul happy.
My passion is helping people. Most of my career was in healthcare, the last 10 years in a community hospice program. Focusing on a terminally ill patient’s pain and symptoms, allowing them to have the highest quality to their life for as long as possible fed my heart and soul. What is Hospice Care
Find your passion and incorporate it into your life. We live very busy lives, and adding a hour or two a week of your passion, can enrich your life.Inspirational-quotes-on-passion
We Can Never Lose HOPE………
100% of the profit from the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). Therese has donated $14,100.00 to HDSA which was the profit since the book was published in April 2017. amazon.com/Watching-Their-Dance
Many of you may not know that Kate Miner, actress, musician, Huntington’s Disease (HD) Advocate has HD in her family. Her mother, and two sisters tested positive. Kate tested negative. What-is-HD?
Jenne Coler-Dark & her husband
Kate & her 2 sisters
Last year, when I was publishing my book, Watching Their Dance, I reached out to Kate requesting a book jacket comment. She graciously agreed and her comment appears on the front cover. Kate and her husband are supporters of the HDSAFREEZE HD event that was held on Sept. 22, 2018 in Los Angeles.
A few days ago, I found this awesome film, The Race, that includes Jenne Coler-Dark’s HD story,Kate Miner’s sister and who is gene positive. Read Jenne Coler-Dark’s Story
The film is about a young, idealistic Huntington’s Disease researcher who comes face-to-face with three generations of a family devastated by the fatal, incurable disease she studies. For the scientist, who has never met anyone with Huntington’s Disease, the stakes of her research become real. For a Huntington’s Disease patient at the center of the story who is watching her mother sicken, fearing her own demise, and afraid for her two kids, it’s a mother’s plea – and a race against time
My sisters-in-law, Lora, Marcia and Cindy were my friends, kind, gentle women; they didn’t chose to have Huntington’s disease (HD); it wasn’t their fault.
HD is a fatal genetic disorder that progressively destroys the nerve cells in the brain. There is NO CURE. It’s like having ALS, Parkinson’s and Alzheimer’s at the same time. http://www.hdsa.org
Fear, anger, sadness overwhelmed me at times and I’m thankful for the counselor I had and for working in the healthcare industry. I wish I could have done more for Lora, Marcia and Cindy; I did the best I could at the time. So, after 10 years, I’ve forgiven myself.
“Forgiveness does not change the past, but it does enlarge the future.”~Paul Boes
“The truth is, unless you let go, unless you forgive yourself, unless you forgive the situation, unless you realize that the situation is over, you cannot move forward.”
― Steve Maraboli, Unapologetically You: Reflections on Life and the Human Experience
Therese at the 2018 HDSA Annual Convention in LA selling her book.100% of the proceeds go to HDSA.
John and I have been connected to the Huntington’s Disease Society of America (HDSA), a nonprofit dedicated to improving the lives of anyone affected by Huntington’s disease (HD) for many years.
Shana Verstegen with her mother who had HD.
It began long ago, 1978, when John’s family secret was discovered; his mom had HD. I’ve received newsletters and info from them for over 20 years and we have donated to the organization regularly as did John’s father. http://www.hdsa.org
So, I’m shouting out about the HDSA Northern California Chapter’s fundraiser on Sept. 8th, the Sacramento Team HOPE Walk. John and I have created “The Marin Team” and want to raise $1,000.00. Here’s the link to register for the Walk or to make a donation to the event. Any dollar amount is helpful in the fight against HD. (HD is a fatal, genetic brain disorder that affects children & adults & there is no cure. It’s like having ALS, Parkinson’s & Alzheimer’s at the same time.)http://www.hdsa.org/THWSacramento
In January of 1988, after Vanessa was born, John and I decided that I wouldn’t return to work and stay home for a couple of years while the kids were young. John was making good money at Placer County, and we had money in our savings account, so I was comfortable living on one paycheck. A Walkthrough Guide to Panic Disorder
At the time, I had two sisters-in-law, who lived locally, challenged by Huntington’s Disease (HD); Lora, severely depressed and drinking herself to death and Marcia, officially diagnosed at UC SF Medical Center two years earlier. What is HD A few months after I resigned from my management job in Sacramento, I began having panic attacks. John’s unknown gene status weighed heavily on my mind. A Walkthrough Guide to Panic Disorder
To ease my anxiety, I decided to pursue a Masters degree in Healthcare Administration. Additional education, I felt, made me more marketable, and would replace time lost in the workforce. I believe knowledge is power and as I studied I became confident that I would secure a job at our community hospital in Auburn, CA which I did in 1991.
The Sacramento Team HOPE Walk is Sat., Sept. 8, at the River Walk Park in Sacramento. To register or make a donation to the event, go to:http://www.hdsa.org/THWSacramento