I‘m continuing with the scene from Watching Their Dance, when Lora, Marcia and Cindy told John and I the family secret; their mother had Huntington’s disease.
This is the reaction I had when the Marin ladies gave us the news.
Page 16, sixth paragraph:
“I leaned back on the couch and took a deep breath as I felt this compelling information slowly registering in my consciousness, alerting my senses to danger. A struggle crept into my mind, a primal instinct screamed, Run, but my heart said, Stay. I felt as if I were being pulled one way and then another, back and forth, back and forth.”
To read the first chapter of the book, please go to my author website, https://www.theresecrutchermarin.com and sign up to receive my weekly blog and I’ll email the first chapter to you.
“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.”
I believe we learn best through stories; whether the story is shared orally, in writing, theatrically, artistically through many mediums, painting, film, architecture, glass, ceramics, etc.
“Stories have power. They delight, enchant, touch, teach, recall, inspire, motivate, challenge. They help us understand. They imprint a picture on our minds. Want to make a point or raise an issue? Tell a story.” — Janet Litherland
This except from Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s takes place in Sept. 1980 just after John and I returned from our honeymoon. My mom and grandmother were visiting and helping me set up our new apartment in Cirby Woods Apt. complex in Roseville California.
“On my last day before returning to work, my mother and grandmother were helping us get settled. Mom was in the kitchen unpacking wedding gifts; since she felt everything needed to be washed first, the dishwasher had been running all day. My parents had accepted my happiness and never brought up any pessimistic or negative feelings about our future. I walked into the kitchen and gave my mother a hug. ‘You might want to take a break Mom.’
When John came home from work, he practically shouted. ‘Wow, the apartment looks great! I can’t believe how much you got done.’ Mom and Grandma were sitting on the couch with their feet up on the coffee table, looking tired. John sat down between them, wrapped an arm around each, and said, “Let’s go to dinner. I want to take you girls out to thank you for all your help.”
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. 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.”
Watching Their Dance, hard book, can be purchased on my Author Website when you live in the U.S. Otherwise, it is available on Amazon. ebook is available on my website and also on ibooks, kindle, kobo, nook, B&N, Smashwords. https://theresecrutchermarin.com/purchase-book/
Most people do not know anything about Huntington’s disease and the relatively small number of people it affects, approximately 30,000 are symptomatic and approximately 200,000 live at risk in the U.S. With that said, it still amazes me the connections I have made with strangers because of this disease.
A few months ago, a friend of mine was reading her favorite columnist’s article in our local newspaper, when the writer mentioned that her grandmother had Huntington’s disease. My friend immediately emailed me the information. In turn, I contacted the columnist and asked her to write a story about our journey as an HD family. She graciously accepted and we made a date to meet. A picture and the article was run in the Auburn Journal on Sept. 12, 2016. To this day, we still have people around town tell us they saw the article and how sorry they were for our losses. http://www.auburnjournal.com/article/9/12/16/auburn-residents-learn-how-live-unknown-huntingtons-disease#.WCz738qVwDg.email
I truly believe we learn through stories. When I was working and visiting patients, hospice and Lifeline, listening to their stories was an honor and it gave them so much joy to share it. Sharing stories passes on wisdom from one generation to another and, at the same time, it validates our lives. And who doesn’t want their lives validated? It’s proof that our life had meaning, that we made a difference and contributed to the world.
The point to this blog is, we all have a story that others can learn from especially if you live in the HD world. I hope to encourage HD families, individuals to write their stories in blogs, in newspapers, magazines, newsletters to educate the world about the challenges we live with day in and day out. Our voices need to be heard, even when it is painful, because once heard, it validates our struggle, our journey, our story.
Writing my story, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, was not always easy but now that it’s complete, Lora, Marcia and Cindy have been honored and I have told a story that no one has every heard before.