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
Have you been confronted with a tough decision, a life altering choice that will have a huge impact on the rest of your life? Folks call it, “A fork in the road” and I had a very difficult decision, which road to take, at age 22.
Excerpt from the nonfiction book, Watching Their Dance: Chapter 1, paragraph 1
“Some lives seem to move smoothly along a natural continuum, with one event or decision seeming to slide into the next. Such people seem to have faced no dramatic forks in the road, had few life-altering choices to make. Other lives, at least in hindsight, travel in a particular direction at one particular life-changing moment. That’s what happened to me, when, at age twenty-two, I suddenly had to confront the most complicated decision of my life.”
To read about the road I chose and the life I had, sign up for my weekly blog at https://theresecrutchermarin.com and I’ll email you the first chapter of my nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. What is Huntington’s disease
100% of the cost of the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA) to help in the fight against Huntington’s disease. To date, I’ve donated $15,000.00. About HDSA
Three (3) years ago today, John and I headed out in our new 30 ft. RV, headed for the Midwest 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. amazon-Mrs.-Therese Crutcher-Marin
The Huntington’s Disease Society of America (HDSA) Annual Convention was being held Schaumburg IL that year and part of the book tour was to attend the convention where I would sell the book. One of reasons I wrote the book was to donate 100% of the proceeds to HDSA; two other reasons were to heighten Huntington’s disease (HD) awareness and honor my three sisters-in-law who had passed away from HD complications. hdsa/annual-convention/2017-2/
John and I spent three months touring the Midwestern states, Nebraska, Kansas, Ohio, Michigan, Wisconsin, Illinois, Missouri, attending 11 HDSA Team Hope Walks, engaging with families at Walks, listening to their HD stores, talking with TEVA reps and selling the book.
In July, we attended the four (4) day Woody Guthrie Folk Festival in Okemah OK, birthplace of Woody Guthrie. It was hotter than hades but a wonderful experience. I was thrilled to meet some of the Arlo Guthrie family members. We also visited the Woody Guthrie Center in Tulsa OK and I held a book discussion with community members. Woody Guthrie Folk Festival/2017-book-tour/
John and I returned home at the end of August 2017, and I wanted to keep traveling, but we needed to get back to reality.
When COVID-19 became a reality, around March 11th, 2020, it changed so much in our daily lives and forced us to do things differently, like changing a fundraiser/event/convention to VIRTUAL events. Also, Huntington’s disease families had grave concerns how the virus would affect their loved ones living with Huntington’s disease.
The 35th Annual Huntington’s Disease Society of America Convention, that I usually attend, was switched to a VIRTUAL event, and redesigned in a matter of about 30 days! It was amazing at the speed HDSA changed it to Virtual.
John and I were looking forward to traveling to New Orleans, that’s where the convention was supposed to be held, because we usually add on two weeks for a vacation. What I missed most of all by it being virtual, were the hugs from friends and reconnection with friends who we look forward to seeing each year at the convention.
HDSA did not disappoint and I commend them for offering the convention for free which was a wonderful gift to global Huntington’s disease community. The sessions offered were timely, uplifting, and informative especially on Saturday, June 6th, with the updates on clinical trials.
I’m also a blogger and the author of the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family at Risk for Huntington’s, 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. What is Huntington’s Disease?
Goodread gave my book a review and said, “A poignant remembrance of a love forged in crisis”.
My story is about the power of HOPE than the wages of Huntington’s. It may sound strange to most folks, but my marriage was actually fortified by its precariousness—I learned to love more deeply in the shadow of John’s mortality. Knowing that my world could change overnight taught me to live MINDFULLY each and every day and never take John, our life, our love for granted. Living with this huge uncertainty also taught me to FORGIVE,LOVE UNCONDITIONALLY and NOT SWEAT THE SMALL STUFF.
“A true story that is as uplifting as it is heartbreaking”. KirkusReviews
HDSA 2019 Convention
Through this experience I learned that, We Can Never Lose HOPE
As of May 7, 2020, John and I are donating 100% of the book purchase price to the nonprofit, Huntington’s Disease Society of America (HDSA). To date, John and I have donated over $15,000.00, the book profit, to help in the fight against Huntington’s disease. My Author Website, where you can purchase the book, is https://theresecrutchermarin.com
May is Huntington’s Disease Awareness Month and I write today to honor Cynthia Ann Marin, the third sister-in-law stolen from us by the insidious Huntington’s disease (HD). What is HD
Cynthia Ann Marin
Cindy moved to Canada in 1974, to get away from the smog and millions of people in California. When I met John, she was as a dental assistant in Surrey, Canada, just above the Canadian border. John called her a “free spirit” and the positive force in their family. Like John, she had a wide smile and hazel eyes, and there was no denying their kinship. I always thought of her as a wander lust being because she traveled the world whenever she had enough money.
Cindy inspired me with her free spirit attitude, her passions and her focus on living life as happy as possible. She taught me about mindfulness and living in the moment, something she was very good at.
John and I thought she would be the one sister who would miss the Huntington’s disease bullet. Lora and Marcia had symptoms in their 30’s and when Cindy turned 41, we thought she was free of HD. Unfortunately, that was not the case. She began losing weight and her gait was very unsteady and she weaved when she stood still. I cried a river when I knew the HD monster found her. She was diagnosed in 1994.
John and I miss her everyday and wish we could have grown old together. On June 4th, 2020 Cindy would have celebrated her 68th birthday. #LetsTalkAboutHD Cynthia Ann Marin’s Obituary