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Survival

Survival

How I Lived with the Uncertainty of Huntington’s Disease

 

Author Therese Crutcher-Marin

I would say certainty is almost always preferable to uncertainty because we humans like to know!  It was critical for me to know the who, what, where, when and why in my life because being in control calmed my Obsessive Compulsive Disorder (OCD) symptoms. Being out of control threw me into an uncertainty-induced anxiety.

In 1978, the Huntington’s disease (HD) monster was introduced into my life.  John, the love of my life, had an unknown gene status for this fatal, genetic disorder that progressively destroyed the nerve cells in the brain. At that time, I was forced to decide if I could live with this huge unknown factor in my life, uncertainty, and if I did choose that path, could I live happily and not be a basket case.

When I decided to marry John, I realized I had to adapt to a life of uncertainty; change my way of thinking, learn to focus on the positive, find ways not to worry about the future.  So, I began searching for something reliable to grab ahold of.  I discovered four (4) strategies to embrace to make uncertainty bearable.

  1. Live mindfully
  2. Have forgiveness in my heart
  3. Cling to HOPE and to John
  4. Don’t sweat the small stuff

We Can Never Lose HOPE…………………….

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is a poignant remembrance of a love forged in crisis. To purchase the book, go to amazon 

My Author Website is:  https://theresecrutchermarin.com

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

 

 

 

 

 

 

 

 

 

Photo credit: One Way Stock via Foter.com / CC BY-ND & Photo credit: DES Daughter via Foter.com / CC BY-NC-SA

Survival

Stretch It Out For Huntington’s Disease

Please join HDSA volunteer Amanda Shrewsbury, yoga certified instructor, for an hour of peaceful yoga on Saturday, August 22, 2020.  It’s FREE to join and it is virtual so after signing up you will receive a zoom link. 

Sign up here:  https://sanfrancisco.hdsa.org/stretchitout

 

The HDSA San Francisco Bay Area Affiliate wanted to hold an event that could calm folks during this pandemic, which we have never experienced before.  COVID-19 creates stress in our lives;  families are out of work or working at home and trying to teach their kids.  Communicating with loved ones and friends is virtual now and hugs are out of the question.

Caring for a loved on with Huntington’s disease (HD) is stressful enough, and very isolating, and COVID-19, compounds the worry.  HD is a rare, fatal, genetic brain order that has all the symptoms of ALS, Parkinson’s and Alzheimers at the same time and there is NO CURE.  What is HD?

I’m the Chair for the HDSA San Francisco Bay Area Affiliate and we are hosting a new virtual event to help with the stress, at least for a little while.

FaceBook Event Page:  https://www.facebook.com/event and San Francisco Bay Area Affiliate FB page:  https://www.facebook.com/hdsasanfranciscobayarea 

We Can Never Lose HOPE………

Author Therese Crutcher-Marin

Survival

Self-Reflection

As we near the end of another year, 2018, take time to review the year and reflect on it.  It’s good to stop and think about the past year or you may want to self-reflect more often than a year.  I believe reflecting can move a person forward in the goals or other things they want to change or achieve in their life.  Please, be kind to yourself as you complete this exercise.

Here are suggestions that might help in self-reflection:

  • Recognize your accomplishments and give yourself kudos for what you did well.
  • Reflect on the lessons you learned, as well as the knowledge and skills you acquired.
  • Acknowledge your mistakes and missteps so you can use them as a self-improvement tool.
  • Analyze how you could do better moving forward.
  • Figure out what gives you joy and what you’re truly passionate about.

Articles to guide you through self-reflection:

https://greatist.com/live/reflect-on-your-year

https://thatsquatbot.com/2017/12/12/why-how-self-reflect/

https://www.lifehack.org/696285/how-self-reflection-gives-you-a-happier-and-more-successful-life

We Can Never Lose Hope………

100% of the proceeds from Therese’s book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA).  Last December, she donated $9,015.00 to HDSA which was the profit from 2017 book sales.  

Survival

A Healing Journey

By 2008, John and I had experienced many losses that scarred our soul: my mother, John’s dad, Lora, Marcia and Cindy we’re gone.  We hated losing our parents but as One ages, it’s expected.  It was at this time, I began searching for a way to heal. My sorrow ran deep from these losses especially from watching three young women die a protracted death by the insidious Huntington’s disease.   http://www.hdsa.org

After many sessions with my therapist, I saw Pam for 12 years, writing therapy, a form of expressive therapy that uses the act of writing and processing the written word as therapy, appealed to me. Writing therapy posits that writing one’s feelings gradually eases feelings of emotional trauma.

Early in 2010, I composed an outline, I didn’t really know how or where to start, so I just began writing my story.  Not too long after that, I joined two writer’s club and shortly after thereafter, I joined a critique group.

I wrote and rewrote for four years, and the critique group proved to be invaluable.  A writer learns, as folks read your work, that you must be tough skinned and accept remarks as constructive criticism. I grew as a writer during this time, attending writing seminars and workshops.  In 2015, I found my editor, Pam, and spent a year rewriting again.

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 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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Photo by robpurdie on Foter.com / CC BY-NC-SA

Love, Survival

The Storm

My perception of a storm is anything that challenges you: a chronic illness/disease, tough love, estrangement, grief, difficult relationships, abuse, religious persecution, money problems, mental health issues and the list goes on and on.  It’s how you handle these arduous conflicts, create space in your life to accept what can’t be fixed and forgive those who have created the storm, either by their choices, bad luck or genetics.

A storm I chose to live in 36 years ago, began by loving  a man with an unknown gene status for Huntington’s disease.  It began as a gentle breeze and I was comforted by its constant message for a while; none of the four siblings were exhibiting symptoms of HD.  That all changed in 1984 when the storm grew into a whirlwind that couldn’t be stopped.

395988_327239660636764_1328574510_nHuruki Murakami said, ” When you walk out of the storm you won’t be the same person that walked in.  That’s what the storm is all about.”

Have a good day!   Therese

 

Mr. Murakami picture is from his Facebook page.
Photo credit: miamism via Foter.com / CC BY

Love, Survival

Walking Through the Fire and Surviving

Survival definition: The state or fact of continuing to live or exist, typically in spite of an accident, ordeal, or difficult circumstances.

Once I found my way back to John, and acknowledged the unknown factor would be a constant in my life, my mind was set on our relationship surviving.  Looking at Huntington’s disease in the face every day began in 1986 with Marcia’s diagnosis, I saw symptoms much earlier, so I had to find ways to deal with it.  My arsenal to combat it was:  living in the day and trying not to sweat the small stuff, having as much control in the situation as possible which wasn’t much, saving as much money as possible, seeing a therapist, use of anti-depressants, having faith, loving deeply, tightly holding on to John, and working with the dying.

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Have a good day.  Therese

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