And I’ll email you the first chapter of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s a nonfiction/memoir. Author Website: http://www.theresecrutchermarin.com
Each of us is given but one pass through life. No retakes. No repeats.
So, make a covenant –
To live well. Be good to yourself, your family and others. Be big in behavior, not small. Think mature, not immature. Take the long view, not shortsighted. Participate thickly, not thinly. Consider carefully Abraham Lincoln’s thought that “in the end, it’s not the years in your life that count. It’s the life in your years.”
Or roll Oscar Wilde’s thought around during the day: “To live is the rarest thing in the world. Most people exist, that is all.” Celebrate how great life is. The world is a beautiful place to be. Colorful. Stimulating. Interesting.
To laugh often. Laughter cures the soul. It removes masks. Humanizes. Laughter heals many rifts, bridges many gaps. It builds memories. Laughter is universal among people. Laughter makes you live longer. Laughter makes friends, builds memories. Laughter vanquishes demons and warms your soul.
To love greatly and deeply. Love is the most generous gift given us. Love makes all else possible. To love greatly means to love unselfishly, for the sake of others as well as yourself. To love things beyond yourself, beyond your personal interests. Love gives back two fold. Love improves others. Love improves the giver.
This statement may seem ridiculous given the statement I’ve created for Huntington’s disease (HD); “the cruelest disease on the planet”. I have not changed my mind regarding the statement but HD transformed my way of thinking, in a positive manner, really, without me even knowing it. WhatisHD
After I’d made the decision to marry John, who had an unknown gene status for HD, I realized, in order to not lose my mind with worry, I had to retrain my brain; first, to learn how to live in the moment. how-train-your-brain-think-differently
I learned to embrace what I had right in front of me; John, our love for each other, the life we were building together, and the hopes and dreams we hoped to achieve.
I learned not think too far ahead and what that might mean because nobody has a crystal ball; for my sanity, this moment, this day is what I focused on.
I didn’t learn these things overnight; it took time to transform my way of thinking since I’m a planner, a very detailed planner.
Like a caterpillar’s transformation into a butterfly, it takes time to relearn how to think.
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/
When I decided to marry John, and took the chance that he had not inherited the mutated huntingtin gene for the worst disease on the planet, Huntington’s disease (HD), I knew the possible consequences of my decision. It may sound strange, but living at risk for HD changed my life for the better; I began living in the moment, enjoying what I had in front of me.
HD is a rare, fatal, incurable brain disease that is like having ALS, Alzheimers and Parkinson’s symptoms at the same time. http://www.hdsa.org
I’ve never regretted taking the chance as it made our love stronger. In 2016, after living at risk for decades, John tested because he felt he owed it to Keith and Vanessa, our children who were getting married. Thank goodness he tested negative. We are very lucky and grateful because he had a 50/50 chance of inheriting the disease like his three sisters, Lora, Marcia and Cindy.
We Can Never Lose HOPE……..
Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is an inspirational love story while living in the shadow of Huntington’s disease. Therese has donated $14,115.00 to the nonprofit, Huntington’s Disease Society of America, which is the profit from the book since publication in April 2017. Author website: http://www.theresecrutchermarin.com
When I was 22 years old, I had to make the most difficult decision (choice) of my life. I was in love with a man I planned to marry after I graduated from California State University, Sacramento. I was at a fork in the road; marry John and live with the uncertainty of Huntington’s disease (HD) or walk away from the love of my life. HD is a rare, fatal brain disorder that is like having ALS, Alzheimers, and Parkinson’s at the same time. There is no cure. The famous folk singer, Woody Guthrie, had HD. info on HD
Many of us have hard choices in our lives; I’ve never met anyone who hasn’t, as it is part of life. Some choices may be more difficult than others; leaving the man I loved who never hurt me or making a choice to stay, was mine.
Fortunately, I had an epiphany which lead me back to my love, John Anthony Marin.
To help in the fight against Huntington’s disease, that killed my three (3) sisters-in-law, at young ages, John and I are donating 100% of the proceeds from Watching Their Dance, a love story while living in the shadow of HD, to the nonprofit, Huntington’s Disease Society of America (HDSA). To date, we have donated over $14,000.00. amazon.com/Watching-Their-Dance-
In the United States, the Rare Diseases Act of 2002 defines rare disease strictly according to prevalence, specifically “any disease or condition that affects fewer than 200,000 people in the United States”, or about 1 in 1,500 people.
With that said, Huntington’s Disease (HD) is a rare disease since it affects approximately 30,000 people in the U.S. What-is-HD
The poster child for HD is the famous folk singer Woody Guthrie who died of complications from HD on October 3, 1967. Marjorie Guthrie was instrumental in the quest to heighten HD awareness, and also connecting with the HD families in the United States. She started, The Committee to Combat Huntington’s Disease (CCHD) in 1967. To read more about the CCHD, go to https://hdsa.org/about-hdsa/hdsa-history/
I’m an HD advocate, having lost my three (3) sisters-in-law to the disease. I volunteer for the nonprofit, Huntington’s Disease Society of America (HDSA) to help in the fight against this horrible disease that affects families for generations. I’m currently working with a group of HD advocates to organize a HDSA Affiliate in the San Francisco Bay Area which, hopefully, in a couple of years will evolve into a HDSA SF Bay Area Chapter. https://hdsa.org/about-hdsa/chapters-affiliates/
100% of the proceeds from Therese’s book is being donated to HDSA. Since publication, Therese has donated $14,115.00. Her author website is: http://www.theresecrutchermarin.com
Melissa Billardi, HD advocate, Founder, President, CEO of HD Support & Care Network, offers a weekly call insupport type group. It is on Thursdays on See Me HD Group Call at 1:00 pm PT/4:00 pm ET Join from computer:https://PMDAlliance.zoom.us/j/769346544
Or Telephone: Dial: +1-408-638-0968 (US Toll) Or +1-646-558-8656 (US Toll) Meeting ID: 769 346 544
Melissa’s Facebook page and HD Support & Care Network website:
“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.”
No one can image what it is like to Live At Risk for the cruelest disease on the planet; Huntington’s disease. What-is-HD This rare, hereditary brain disorder, is like having ALS, Alzheimers and Parkinson’s at the same time, has no cure and strikes during prime working years. It’s difficult to understand, unless you have lived it.
100% of the profits from Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is being donated to the nonprofit, HDSA. Therese has gifted $14,100.00 to HDSA since publishing the book in April 2017. amazon.com/Watching-Their-Dance