As we proceed into the new year, a new chapter, a fresh start, embracing new years resolutions into our lives, I’m focusing on three (3) ways, there are many acts, that I can show humanity to others. Humanity refers to the KIND feelings humans often have for each other:
Hello Human Kindness
Always Look for the Good In People …
Give Back To The Community
In my career I strived to work in a positive community that permitted me to serve our fellow man. Hospice work allowed me to care for those dying and their families.
An individual who has a parent with Huntington’s disease has a 50/50 chance of inheriting the mutated huntingtin gene that causes Huntington’s disease (HD). I had never heard of HD until I met my husband, John, in college. Unbeknownst to John and his three (3) sisters, their mother had HD along with her two brothers and one sister.
Is this difficult to live with a flip of a coin chance? I can’t answer that but I can answer how difficult it was for me as I silently waited, watched, and prayed, these four (4) siblings would be free of the disease.
I married into the Marin family recognizing that, statistically speaking, at least two (2) of the four (4) sibling would inherit the gene. Living everyday with this RISK changed the way I looked at life and the threat strengthened my commitment and love for John because I knew our life could change in the blink of an eye.
John and I didn’t sweat the small stuff, nor did we put off something we wanted to do. Some people wait until they retire to do this or that, John and I did it as soon as we could. We both had good jobs which allowed us that freedom. When our children were born, we made as many memories as we could so if their dad developed HD, they had those memories.
Today, October 25th, Marcia Louise Marin would have celebrated her 73rd birthday. John and I celebrate her life as we are the rememberers of the three(3) Marin sisters.
I acknowledge the positive impact Marcia had on my live as I witnessed her strength, kindness, generosity, gentility, grace, her ability to forgive and accept people where they were at. She was the most unassuming person I have met in my life. John had a very special relationship with his sisters; they depended on each other because they had an absent father and a mother in Napa State Mental Hospital.
Marcia is the second Marin sister to be stolen from my family by the insidious Huntington’s disease(HD). I call it the cruelest disease on the planet because Marcia was a young, successful professional at AT&T in San Francisco, had a bright future ahead of her when at age 32 became symptomatic. She was able to work until age 36 by writing notes to herself at work and changing from high heel shoes to flats because her co-workers thought she was drunk.
It is with much sadness that my children, Keith and Vanessa, didn’t know this aunt before she became ill. Marcia would have been a wonderful aunt and awesome role model.
At the end of January Huntington’s Disease Society of America (HDSA) sent a survey to individuals who attended recent HDSA Annual Conventions to collect important feedback as they planned the 36th Annual HDSA Convention scheduled for Spokane, Washington this June. What is HD?
After HDSA reviewed the survey results, working with the Convention host hotel, and consulting Washington State guidelines (current and projected) related to events, HDSA have made the difficult decision to once again host the 36th Annual Convention virtually. So, mark your calendars to join HDSA virtually on June 10th-13th, 2021. https://hdsa.org/news/the-36th-annual-hdsa-convention-goes-virtual/
As much as HDSA would have loved to have been in Spokane with all of us in June, the health and safety of HDSA families remains their top priority. Plans are already underway for another world-class virtual event which will reach more people around the globe than ever before and will ensure that families around the world have free access to our incredible HDSA Annual Convention program.
Since losing my three sisters-in-law, Lora, Marcia and Cindy Marin, to Huntington’s disease complications, at young ages, I am haunted by their memory. John and I were by each of his three sisters’ side while they struggled with Huntington’s disease for 24 years. These experiences are embedded in my mind, heart and soul.
Lora, Cindy, Marcia Marin
Most people associate the word “haunt” as a bad, troubling experience, but to me “haunt” is: to recur persistently to the consciousness of; remain with; not easily forgotten. I’m no psychologist but I believe I consciously chose to have Lora, Marcia and Cindy remain in my heart and, yes, creep into my consciousness everyday. I believe this is my way of keeping their memory alive, honoring them because they tremendously influenced my life.
Maybe one day, after I’ve done my best to help the nonprofit, Huntington’s Disease Society of America (HDSA), these ladies will not live in the fore front of my mind and I will find peace knowing I’ve done everything I could to remember them.
Author Therese Crutcher-Marin
We Can Never Lose HOPE……
To receive the first chapter of the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, visit my author website Author Website and sign up for my blog and I’ll email the chapter to you. (signup is on right side of page)
From the moment I began writing my nonfiction book, I knew what the title would be; Watching Their Dance. It made sense to me because that is what I had done for 24 years, watched my three dear sisters-in-law, Lora, Marcia and Cindy struggle with Huntington’s disease, each with their own unique dance.
When I first heard about the disease, it was referred to as Huntington’s Chorea. The word Chorea is described as an abnormal involuntary movement derived from the Greek word “dance”. It is characterized by brief, abrupt, irregular, unpredictable, non-stereotyped movements.
The nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family at Risk for Huntington’s is my inaugural book. It’s an inspirational love story while living with the uncertainty of my husband, John, inheriting the fatal brain disorder, Huntington’s disease, which has no cure.
The eternal optimistis a person who stays positive no matter what happens to him/her. It could be said that this approach is the opposite of complaining and seeing events as negative.
Lora, Marcia, Cindy and John Marin always amazed me because of their eternal optimist attitude. Even though they had a horrible childhood with no mother at home and an angry, absent, abusive father, they are the most positive people I have ever known.
When I was having melt downs as I watched each sister-in-law slowly be stolen from us by Huntington’s disease, they never complained or said anything negative about their situation. They just smiled and said things like, “I’m lucky I have HD instead of cancer because with cancer you have pain”, or “I don’t blame dad because he did the best he could do”.
Their positive attitude always amazed me and I felt ashamed, not being strong like them, and that I was upset about the situation and they were not. As time passed, I came to understand that their positive attitude was a gift and I was supposed to learn from them.
One of the lessons I learned was to never see the glass half empty, always see the glass half full.
John continues being an eternal optimist and always will be. That is what I loved about the Marin siblings and I was blessed to have known them and have them in my life.
Sports Basement, a sports store in the San Francisco Bay Area, is a sponsor for the upcoming Huntington’s Disease Society of America (HDSA) San Jose VIRTUAL Team Hope 10K Run & 5K Walk on June 20, 2020.
The HDSA Run/Walk raises funds to help support Huntington’s disease (HD) resources in the Bay Area. Consider helping in the fight against HD, a rare, fatal, genetic brain disorder that has NO CURE. What is HD
Sports Basement is offering great discounts from June 13 through June 28th. If you are a Basementeer you receive another % off, and you can designate the nonprofit, HDSA, as your charity to donate a certain % of your purchase to them. It’s FREE money for HDSA and doesn’t take any work at all. https://shop.sportsbasement.com/
We all know how music and the lyrics to a song can trigger emotions and take us back to different times in our lives. Music can touch your soul; reminiscent of special times in your life or challenging ones.
In the AFTERWORD section of the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, I wrote a poem. I’m really not a poet but Bruce Springsteen’s song, Land of Hope and Dreams, inspired me to write about my own hope and dreams in the mist of living with the threat of Huntington’s disease.
100% of the cost of the book is donated to the nonprofit, Huntington’s Disease Society of America. http://hdsa.org
“We’re all riders on a train traveling through life. The choices we make on the journey determine the weight of our load. When confronted with tough times, many discover they must lighten their load.
John Anthony Marin, my key rider, willingly disembarked in 1978, while I struggled with the direction of my train. Eventually, I circled back to find him waiting patiently for me. He boarded my train again, and together, we rolled through the fields of life where sunshine streams and set a new destination, a land of hope and dreams.”
John and his sisters, Lora, Marcia and Cindy don’t know a lot about her, their father never discussing her with them. So, I too, know very little but here’s what I do know.
She was admitted to Napa State Mental Hospital around 1950 on a part time basis. At that time she had two babies, Lora and Marcia, and she could not care for them. The doctors did not know what was wrong with her, and because she came home, she had two more children, Cindy and John. When Cindy was born, she was given to John’s Aunt Adeline and when John was born he was given to his Aunt Connie because Phyllis was unable to care for four children under the age of five.
Lora, Marcia & Cindy
Lora and Phyllis
She died in 1968 of strangulation as she got tangled up in the restraints the hospital had on her because her chorea was so bad. The underlying cause of her death was stated to be Huntington’s Chorea. History of Huntington’s Disease
This is such as sad story, but not unusual as Huntington’s disease family stories are always heartbreaking.