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The Marin Siblings

Grief, The Marin Siblings

What is Survivor Guilt?

My husband, John, suffers from Survivor Guilt since he survived Huntington’s disease when his three sisters did not.  It’s not uncommon for guilt to arise in grief.

“On a basic level, survivor guilt is exactly what it sounds like: a sense of deep guilt that comes when one survives something.  If you have heard of survivor guilt before what likely comes to mind is survivors of wars, natural disasters or other traumas.  Survivor guilt was actually first documented and discussed after the Holocaust and what has become clear in the decades that have followed is that survivors’ guilt is far more common than was initially understood.”

Articles on survivor guilt

 https://whatsyourgrief.com/understanding-survivor-guilt/ 

https://www.psychologytoday.com/us/blog/how-be-yourself/201711/six-tips-handling-survivor-guilt

So when might one experience survivor guilt?

-After causing an accident in which others died
-Guilt for not being present at the time of an accident to potentially save the person who died
-When a child dies before a parent
-Death of a sibling, especially in the case of an illness

We Can Never Lose HOPE……

Author Therese Crutcher-Marin is donating 100% of the profits from her book to Huntington’s Disease Society of America.  https://www.amazon.com/-/e/B06ZY85776

 

The Marin Siblings

An Excerpt from “Watching Their Dance”

         May is Huntington’s Disease Awareness Month

Chapter 13 “A Genetic Marker”, page 113 

This chapter takes place in 1983 & 1984, which were two good years in so many ways for John and me, and Huntington’s disease, but turned tragic for Lora, John’s oldest sister. The Discovery of the HD Genetic Marker in 1983

Lora was in Starting Point in this scene, a drug/alcohol rehab center.

“Another issue weighed heavily on my mind, but I didn’t dare talk about it.  Because an early and prominent symptom of HD is depression, a person with Huntington’s can turn to alcohol as a way to self-medicate.  With all her other problems, Lora must have been terrified of having Huntington’s, because it wasn’t an abstract disease to her.  The memories of watching her mother’s struggle must have remained vivid in her mind.  

After John had attended four of Lora’s sessions, he came home with upsetting news. “Dave told the group that Lora’s hospital stay last year wasn’t about hepatitis B,’ I started nodding, ‘but the beginning of cirrhosis of the liver.’  

I gasped and my eyes starting filling with tears. “What did she say about me coming to her sessions? You told her I want to help, right?’ 

‘Yes, I asked her, Therese.’ He looked away. “She doesn’t want you there. She doesn’t even want me there, but I’m not going anywhere.  She’s so angry. I don’t think it would be good for either of you.'”

Read about Challenging Behaviors in Huntington’s disease 

From the above article:  “Substance Abuse or Dependence Includes alcohol or recreational drugs. Abuse or dependence on substances can mask and/or intensify behavior symptoms. May be used to “self-medicate” from the symptoms of HD. Interferes and/or disrupts daily life, social relationships, work performance, etc.”

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the profits from the book is being donated to Huntington’s Disease Society of America (HDSA).

We Can Never Lose HOPE………….

#LetsTalkAboutHD  #HDAwarenessMonth

#HDSTRONG #HDSAFamily

 

 

 

 

Mindful, The Marin Siblings

Excerpt from Chapter 18-Watching Their Dance

Chapter 18-A Pre-Symptomatic Test for Huntington’s Disease, Page 153-Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s

“I never forgot that John was now in the high-risk age range and would be for another eight to thirteen years.  Over the past few years, I had realized that this uncertainty, which I had take on willingly, had opened my heart to love much more deeply, and acknowledging that my world could change in a heartbeat made my life with John so much richer.  Life was just too precious to waste a minute arguing over any small stuff.  

Lora, John and Keith in our backyard in 1985. Lora was living with us.

I had learned to overlook shortcomings and compromise without anger.  And the Marin siblings had taught me about forgiveness and unconditional love, traits not common in my family.  I forgave Dave time and time again and never for a moment stopped loving Lora, even when she hurt my feelings.  

Letting go of the anger I felt when I couldn’t control a situation calmed my OCD to a manageable level, and lessing my anxiety allowed me to relax and find joy in the simple things.  Perceiving the future as a blank canvas helped, as did not dwelling on it.  Keith remained the best method of staying in the present, and I drew strength from being physically near John, ever the optimist.  Staying focused was key to this constant battle.” 

 Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the proceeds from Therese’s book sold in the U.S. will be donated to HDSA.  http://www.hdsa.org     Therese and John donated $9,015.00 to HDSA that is the profit from book sales since Therese published in April 2017.

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The Marin Siblings

Excerpt from Chapter 17-“Watching Their Dance”

Chapter 17-A Neurological Exam

“The morning Marcia was to learn her test results, I raised the shade in our bedroom and the sun poured in, brightening my mood for a moment.  Neither John nor I mentioned her as we got ready for work, and by the time I got to my office, my stomach was churning.  I had such a hard time getting anything accomplished, I grabbed a cup of coffee and went outside for a break.  I leaned against the building and prayed.

That evening, the room seemed to grow cold when Marcia called and I watched John’s reaction.  My big, strong man crumpled in front of me, slowly wilting and then bending in two like a broken twig. I grabbed the phone and said, “Hi.”  All of a sudden, Marcia started talking in a flat tone of voice.

‘You know, the last few months at work have been hard.  Many of my co-workers said I slurred my words and thought I was drunk.’  She paused for so long, I wasn’t sure she was going to continue.  After a minute, she blurted out, ‘I had to stop wearing high heels, because I was losing my balance.  My memory was getting so bad, I started writing myself notes.'”

We Can Never Lose HOPE……………………….Therese

Therese’s memoir, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is an inspirational love story that was inspired by Lora, Marcia and Cindy Marin. 100% of the proceeds from the book is being donated to Huntington’s disease organizations around the world.  To purchase book go to:  http://www.theresecrutchermarin.com 

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The Marin Siblings

The Positive Nature of the Marin Siblings

I met John and his sisters in 1976, and I quickly became closer to Lora, Marcia and eventually to Cindy than I was to my own sisters.  These four very special people taught me to enjoy life everyday, never give up on your dreams, look at the positive side of things and not dwell on the negative. They are the most positive people I’ve ever met in my life.

John continues to be Mr. Positive and his attitude never changed even during our darkest times when each sister struggled with Huntington’s disease.   http://hdsa.org/what-is-hd/    Though they are gone from our sight, they still inspire me.

There are many benefits to thinking positively.  Here’s one article:  Positive Thinking   

Read Norman Vincent Peale, author of Power of Positive Thinking, famous quotes.  You’ll be inspired!   https://www.goodreads.com/work/quotes/1121350-the-power-of-positive-thinking  

“Researchers continue to explore the effects of positive thinking and optimism on health. Health benefits that positive thinking may provide include:
  • Increased life span
  • Lower rates of depression
  • Lower levels of distress
  • Greater resistance to the common cold
  • Better psychological and physical well-being
  • Better cardiovascular health and reduced risk of death from cardiovascular disease
  • Better coping skills during hardships and times of stress”

Therese’s memoir, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is an inspirational love story that was inspired by Lora, Marcia and Cindy Marin. 100% of the proceeds from the book is being donated to Huntington’s disease organizations around the world.  To purchase book go to:  http://www.theresecrutchermarin.com 

Subscribe to Therese’s Blog via Email

 Enter your email address to subscribe to Therese’s blog and receive notifications of new posts by email and receive the first chapter of her book, Watching Their Dance, via email.

The Marin Siblings

Excerpt from “Watching Their Dance”

Chapter 17, page 147………………….

“When I woke up, Marcia, Cindy and John were at the kitchen table.  Marcia was giggling, and I was elated to see such a smile on her face.

What’s so funny?

Oh, we’re talking about Lora and the trouble she caused, Cindy said.  Remember the night the Mercury blew up, and the time she thought a convict was going to kill us all?  Lora always exaggerated.

I wondered if John and Cindy were laughing about the past, a common Marin coping mechanism, to defuse their own fears.  In addition to Marcia, how could they help being terrible afraid for themselves?

John couldn’t stop laughing.  Oh yeah.  She was coming home from Freddie’s Pizzeria late one night when the Mercury burst into flames, as Lora put it.  Dad should never have bought it, but when you’re a teenager, you don’t complain when you’re given a car, even if it’s a piece of shit.  Thank goodness, Uncle Jimmy was following her home.”

     

Lora, Marcia, Cindy and John were four mischievous little kids, left alone often by their father.  How could they not get into trouble?  Isn’t John cute!

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Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

The Marin Siblings

Watching Their Dance-Chapter 13

I hope you enjoy an excerpt from Chapter 13 in my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s https://www.amazon.com/author/theresecrutchermarin 

“Placer County proved to be an excellent place for John to work, since it was growing rapidly and offered many opportunities for a young professional.  Just after our third anniversary, a position became available in the planning department, and John got the job. He would assist the Placer County planning commission in preparing for growth, enforce the county’s zoning ordinance, and review and make recommendations on land development.

Both John and I worked with young married couples that were starting families. This opened a long conversation as to where or not we should have children. I was having a hard time getting past the risk involved, agonizing over bringing a child into the world when quite possibly condemning him or her to the life of uncertainty we led.”

100% of the proceeds from my book is being donated to Huntington’s Disease organizations around the world.

Watching the Dance Huntingtons DiseaseWe can never lose HOPE……………….Therese

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle,Kobo, Nook, iBooks file.

 

Hope, Love, The Marin Siblings

Remembering the Marin Sisters at the SF Writer’s Conference

As John and I drove home Sunday evening after I attended the SF Writer’s Conference, my thoughts were on Lora, Marcia and Cindy, my sisters-in-law who were stolen from us by Huntington’s disease.  The motivation I’ve had for writing and publishing the book, Watching Their Dance: Three Sisters, A Genetic Disease and Marrying into a Family At Risk for Huntington’s was fueled by them, my friends and the love John has for his sisters.

Since these three lovely ladies were so closely entwined in our lives, their experience with HD was essential to the story of how I survived for 38 years living in a family at risk for the worst disease on the planet.  As the launch date for my book grows near, my heart is filled with excitement and joy knowing these three amazing women will live in the pages of my book forever.

I HOPE thousands of folks will enjoy my book, which in turn will generate substantial revenue to help fight HD along with heightening awareness of the insidiousness of the disease.

Loralee Marin

Marcia Louise Marin

Cynthia Ann Marin

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Enjoy your day!  Therese

The Marin Siblings

Sibling Love

The following is the  first page of my memoir, Watching Their Dance: Three Sisters, One Genetic Disease and Marrying into a Family At Risk for Huntington’s

CHAPTER ONE

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.

I met John Anthony Marin in 1976, when we were attending junior college in Contra Costa County, across San Francisco Bay on the far unnamedside of the Berkeley hills. I was twenty and he was one year older, with light brown hair and kind hazel eyes, tall, handsome, and athletic; I fell for him immediately. We felt so close so quickly, it wasn’t long before we were a couple.

I quickly learned that being with John meant having his three older sisters in my life as well. The four had had a difficult upbringing and were exceptionally close. Their mother had been placed in a psychiatric hospital when John was just a baby. Their father, Big John Marin, would never tell them why their mother was gone and when she might come back. Of course, his life was difficult, too: In addition to having four children under age six and working full-time, he helped his elderly immigrant parents manage a five-acre ranch next to his home. Even so, he didn’t seem to take much interest in his children, never showing them affection or encouragement, only criticism and negativity. He treated his oldest daughter, Lora, as a housekeeper, and the others just stayed out of his way.

When I met them, Lora was twenty-eight, a blond, striking woman with a creamy complexion, twinkling eyes, and a welcoming smile. Her generosity and bubbly personality drew people to her; I always felt a light radiated from Lora. By day, she was a sc0009de2csecretary at an accounting firm in Sacramento; by night, a highly creative chef. I loved visiting her and her husband, Dave, a jokester and life-of-the-party kind of guy. He and Lora had become a couple when she was fourteen, and Dave had embraced John, then eight, like a big brother.

Marcia was twenty-six. She was shy but sophisticated, glowing with gentility—the first woman I knew who looked chic in jeans, maybe because she had them dry-cleaned. Her light brown curly hair and makeup were always impeccable. Neither sister had a college degree; after Marcia graduated from high school, she’d gone to work in San Francisco in the typing pool at Pacific Bell. But she was smart and ambitious, and ten years later, her title was Marketing Representative. She lived in an apartment in Walnut Creek, about fifteen miles east of Oakland. She’d been with Glenn, a local realtor, for several years.  unnamed-2

By the time I began dating John, Cindy, two years older and his childhood buddy, was working as a dental assistant in Surrey, British Columbia, just above the Canadian border. She visited during the holidays, so I’d been with her a few times. 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.

 

*******************************************************************Cindy with cousin Dee Yount

I have yet to meet another family whose siblings share the same closeness as did the Marin siblings. There were times when I envied the relationship John enjoyed with his sisters. Over the years, I have worked on my relationship with my sisters, having learned from the love between Lora, Marcia, Cindy and John.

I’ll be posting a page from my book each month for your enjoyment and to give you a flavor of the story.

Have a good day!  Therese

The Marin Siblings

Learning to Cope

Lora, the oldest Marin sibling, was never tested for Huntington’s disease because at the time, early 1980’s, no test existed.  We don’t know if she was drinking herself to death because living at-risk for Huntington’s disease was unbearable, or because her brain had begun to die from Huntington’s disease and depression had set it.  Whatever the reason, her tragic death at age 41 was devastating to our family.

Around the same time, I saw symptoms of the disease in Marcia, and I was beside myself.  I couldn’t understand why bad things were happening to such good people.

urlAfter Lora’s death and when we were caring for Marcia, a co-worker and friend in hospice, Tom Nadelin, suggested I read the book, When Bad Things Happen to Good People by Harold Kushner.  Kushner addresses one of the principal problems of theodicy, the conundrum of why, if the universe was created and is governed by a God who is of a good and loving nature, there is nonetheless so much suffering and pain in it – essentially, the evidential problem of evil.

The book was dedicated to the memory of his young son, Aaron, who died at the age of 14 in 1977 of the incurable genetic disease, progeria.

It’s a classic that offers clear thinking and consolation in times of sorrow, and it has brought solace and hope to millions of readers. I was one of them.  

Have a good day!   Therese 

Photo credit: pareeerica via Foter.com / CC BY-NC-ND