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The Marin Siblings

Love, The Marin Siblings

A Letter to the Mother-in-Law I Never Knew

Phyllis Iva (Cahoon) Marin, the mother-in-law I never knew, has been on my mind through the years.  I wish I’d known her and I feel cheated not to have had her in my life. I’ve written a letter to her to express my feelings.

Dear Phyllis, 

My name is Therese Marie Crutcher-Marin and I married your kind-hearted son, John Anthony Marin and we will celebrate 40 years of marriage on Sept. 27th. 

I want to thank you for giving him to the world, a world where I was able to find him.  He is the love of my life and I’m ashamed to say I almost didn’t marry him, out of fear, because of the threat of Huntington’s disease.  If John had inherited the mutated huntingtin gene and became ill, I would have taken care of him, since that’s what I believe you do for the people you love.    

Your three daughters, Lora, Marcia and Cindy, were also benevolent, compassionate women and you would have been proud of the kind of people they became as adults.  I loved these women like they were my own sisters and I miss them everyday.  Unfortunately, Huntington’s disease stole them away from us, but rest assured, John and I took care of them through their long journey’s with this horrific disease.  

I find comfort knowing that the four of you are together in heaven, as it should be, a mother with her children, and I pray your souls find peace spending eternity together with our loving Father. 

I’m looking forward to meeting you one day.

Your devoted daughter-in-law, Therese

 

We Can Never Lose HOPE….

My author website is:  https://theresecrutchermarin.com

Author Therese Crutcher-Marin

 

The Marin Siblings

The Marin Women & Huntington’s Disease

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 

We Can Never Lose HOPE…. 

Author Therese Crutcher-Marin

 

Lora, Cindy, Marcia Marin

My Author Website:  https://theresecrutchermarin.com/what-is-huntingtons-disease/

 

 

 

 

The Marin Siblings

The Marin Women & Huntington Disease

UMay is Huntington’s Disease Awareness Month and I write today to honor Marcia Louise Marin, the second sister-in-law stolen from us by the insidious Huntington’s disease (HD).  What is HD   

Marcia Louise Marin

Marcia was twenty-six when I met her.  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 Lora or Marcia attended college; 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. 

In 1985, Marcia was in a terrible auto accident and retired from  Pac Bell.  Her co-workers though she was drunk on the job because she fell off her high heels and she couldn’t remember things.  The next year, Marcia was diagnosed by neurologists with Huntington’s disease at the University of California, San Francisco.   

It was a tremendous blow for all of us but, unfortunately, I had seen symptoms in Marcia for about three years; twitches, losing her balance, taking falls.  #LetsTalkAboutHD

John and I miss her everyday and wish we could have grown old together.  On October 25, 2020 Marcia would have celebrated her 71st birthday.

We Can Never Lose HOPE…. 

Author Therese Crutcher-Marin

 

Lora, Cindy, Marcia Marin

My Author Website:  https://theresecrutchermarin.com/what-is-huntingtons-disease/

 

The Marin Siblings

The Marin Women & Huntington’s Disease

May is Huntington’s Disease Awareness Month and I write today to honor Loralee (Marin) Harbin, the first of my three (3) sisters-in-law stolen from us by the insidious Huntington’s disease (HD).  What is HD

Loralee Marin

Lora, one of the kindest human beings I have ever met, blessed my life for 13 years.  I met Lora when she was 28 years old and I was a young 21 year old college student.  She was a beautiful 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 her.  By day, she was a secretary at an accounting firm in Sacramento; by night, a highly creative chef.

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

I loved Lora, as did John, and HD had a deep psychological effect on her; HD can affect people differently.  Lora became severely depressed and self-medicated with alcohol which lead to the end of her marriage, job and life.  Lora, the oldest of the four siblings, saw her mother struggle with HD, and, once learned she might inherit the disease, it sent her over the edge. 

In 1985, she was diagnosed with cirrhosis of the liver and prescribed coumadin, a blood tinning medication.  In September 1989, she took a bad fall, had a cerebral hemorrhage and died.  

John and I miss her everyday and wish we could have grown old together.  On July 15th, 2020 Lora would have celebrated her 72nd birthday.  #LetsTalkAboutHD

We Can Never Lose HOPE…. 

Author Therese Crutcher-Marin

 

Lora, Cindy, Marcia Marin

My Author Website:  https://theresecrutchermarin.com/what-is-huntingtons-disease/

 

 

The Marin Siblings

Honoring Three Women Struck Down by Huntington’s Disease

Lora, Cindy and Marcia Marin

Lora, Cindy, Marcia Marin

Lora, Marcia and Cindy Marin, my three (3) sisters-in-law, who died from Huntington’s disease (HD) complications, are never far from my thoughts.

I’m a HD advocate for many reasons and first and foremost it is because I want to honor these three (3) beautiful women whom I loved.  John, my husband, and I miss them everyday and wish we all could have grown old together and celebrated many more Christmas’s, Thanksgiving’s and birthday’s.

HDSA 2019 Convention

Huntington’s disease, a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s, and Alzheimers at the same time.  This disease has no cure and devastates families for generations.  It’s an insidious disease because when a parent has the disease, every child has a 50/50 chance of inheriting the mutated HD gene that causes the disease.  More about Huntington’s disease

I’m a volunteer for Huntington’s Disease Society of America (HDSA), a nonprofit dedicated to improving the lives of HD families.  I’m currently the Chair for the HDSA San Francisco Bay Area Affiliate and I work with a fabulous team of HD advocates to heighten HD awareness and raise money to fund local services like HD support groups, the Centers of Excellence at Stanford University and University of California, San Francisco, HD Education Days and research.  http://hdsa.org

https://sanfrancisco.hdsa.org/

Being involved has given me peace and soothed my soul by doing this important work in memory of Lora, Marcia and Cindy.

Benefits to volunteering:  https://nonprofithub.org/featured/8-long-term-health-benefits-of-volunteering/

We Can Never Lose HOPE………………………..

 

A Love Story, The Marin Siblings

That’s How Love Moves

That’s how love works………That’s how love moves……..

Like a river running through you………lyrics from That’s How Love Moves by Faith Hill.

Once John wrapped his arms around me, I was never the same.  He saw something in me that I never knew I had…………………. courage.  Courage to love despite the enormous challenge that lay ahead in the years to come.

The challenge?  Huntington’s disease (HD); the cruelest disease on the planet.  A rare, fatal, genetic brain disorder that has all the symptoms of ALS, Alzheimers, and Parkinson’s at the same time and their is NO CURE.  John and his three (3) sisters were at risk, a 50/50 chance, for inheriting the horrific disease that destroyed their mother.  What is Huntington’s disease?

Lora, Cindy and Marcia Marin

The unconditional love I had for the Marin siblings and the love John had for me, saved me; saved me in every way possible.  Love kept me grounded, even during the worst of times when I was desperate to escape from the 24-year nightmare; watching his three sisters battle HD.

We Can Never Lose HOPE……..

100% of the proceeds from the nonfiction book, Watching Their Dance, is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA) to help in the fight against Huntington’s disease.

Therese’s Author Website: https://www.theresecrutchermarin.com

 

 

 

 

Huntington's Disease, The Marin Siblings

Huntington’s Disease Impact Through the Generations

Phyllis Marin

Most of John’s relatives, did not know or understand the magnitude and the impact of Phyllis’s diagnosis of Huntington’s disease (HD) on the four Marin siblings lives.

Because Phyllis had HD, Lora, Marcia, Cindy and John each had a 50/50 chance of inheriting this horrific disease with no test, at the time, and no cure or therapy.  HD is a rare, fatal, genetic brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimers at the same time, strikes during prime working years, is a long progressive disease and has no cure.  Sixteen percent (16%) of HD cases are children with Juvenile HD.      http://www.hdsa.org

Their story is not unusual and I’ve heard similar stories from families in the HD community; one of secrecy, deception and misdiagnose.  John’s father never told the siblings about their mother and they had to discover on their own why Phyllis was in Napa State Mental Hospital for 18 years.

Through the years I have come to believe their father did this to protect them, but it still seems unfair to have kept this information a secret. 

Lora, Cindy and Marcia Marin

 

 

We Can Never Lose HOPE………………..

100% of the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is being donated to the nonprofit, Huntington’s Disease Society of America.  To date, $14,100.00 has been gifted to HDSA.

Author website:  https://www.theresecrutchermarin.com

 

Watching the Dance Huntingtons Disease

 

 

HDSA Fundraising events, The Marin Siblings

John & Therese Marin Team Hope Walk

John and I are participating in the HDSA Sacramento Team Hope Walk on Sept. 8th, 2018 to help in the fight against Huntington’s disease that killed my 3 sisters-in-law, Lora, Marcia and Cindy. Click here to register or to make a

Lora, Cindy and Marcia Marin

donation:  https://hdsa.donordrive.com 

We are so grateful John tested negative for the mutated Huntingtin gene in 2016.  I’m on the Huntington’s Disease Society of America (HDSA) Northern California Chapter Board of Directors organizing fundraisers and heightening awareness. http://www.hdsa.org

LUNCH IS PROVIDED WHEN YOU REGISTER 

 

We Can Never Lose HOPE……

 

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  https://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