Forgiveness

Learning to Forgive

Author Therese Crutcher-Marin

I’m currently in a situation where forgiveness would allow me to move forward.  But, I’m stuck and having a hard time forgiving because I don’t understand why it happened, it makes me angry, it indirectly hurting other folks and it’s counter productive.

I talk about kindness and forgiveness on my personal Facebook wall quite often, so at this time, I’m working on not just “Talking the Talk” but “Walking the Talk”.  

THE POWER OF FORGIVENESS – AND WHY IT’S HARD   https://www.powerofpositivity.com/

“The act of forgiveness may just be the single most powerful antidote for the pain caused by others.

Forgiveness does not mean that you “forget it and move on.” Nor does forgiveness mean that you absolve the person of their actions.

Forgiveness, instead, is choosing to compassionately release the desire to punish someone or yourself for an offense.

Yes, forgiveness is a choice. Yes, you can forgive yourself. But here’s the thing: while we may accept these statements on the surface, we often have trouble following through on the act of forgiveness – be it forgiving ourselves or someone else.”

We Can Never Lose Hope………..

 

 

 

 

Photo by symphony of love on Foter.com / CC BY

A Love Story, Marketing

Memoir Appeals to a Broad Audience

When I began writing, Watching Their Dance, a nonfiction story, I wanted to appeal to a broad audience.  After educating myself and reading about marketing a book, I realized I needed to narrow my focus first on the audience that I was pretty sure the story would appeal to.  That audience was the Huntington’s disease community.  Once you have success with that audience, then you begin to branch out to another audience.  

Here’s the truth: When you write for everyone, you write for no one.   https://goinswriter.com/writing-tip-be-specific/ 

My biggest supporters, the HD community,  did and still do support me and now I’m branching out to other audiences who might enjoy my book.  The first audience I’m focusing on are readers who like love stories; the second audience are folks who like to read about a person/family overcoming a tremendous challenge in their life.

 Marika Jaegers, HOPES Project Co-Leader & Student Researcher, who reviewed the book, said this:  

“Watching Their Dance offers a wide range of insight into living at risk for Huntington’s, living with Huntington’s, and caring for someone with Huntington’s. It is a worthwhile read for a broad audience: those affected by Huntington’s Disease, those curious about the disease, or those who know nothing of the disease but wish to read a captivating and insightful memoir.”  Stanford Literature-Corner

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     Last December, Therese and John donated $9,015.00 to HDSA that was the profit from book sales since Therese published in April 2017.

We Can Never Lose HOPE………..

#LetsTalkAboutHD      #WeCanNeverLoseHOPE     

#HDSAFamily    #HDSTRONG

 

HDSA Northern California Chapter

The Sacramento Team HOPE Walk

 

The HDSA Northern California Chapter is holding its         10th Annual Sacramento Team HOPE Walk. 

Please come out and help in the fight against the cruelest disease on the planet; Huntington’s disease. (HD is a fatal, genetic brain disorder with no cure. It affects children and adults.  It’s like having ALS, Alzheimer’s and Parkinson’s at the same time).  http://www.hdsa.org

To register go to:  http://www.hdsa.org/thwsacramento

You’ll receive a T-shirt and breakfast will be provided. Coffee, bagels, fruit, yogurt, pastries. 

 

2 great RAFFLE prizes for the kids! GolfLand/SunSplash in Roseville! 

 

HDSA Fundraising events

A Rare Disease That Needs a Cure

 

Phyllis Marin

Lora, Cindy, Marcia Marin

Huntington’s disease (HD) is considered a rare disease because it affects 1 in 10,000 people in the U.S.

Definition:  Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.

The gal in the top left hand corner is John’s mother and the three lovely ladies in the other picture are my sisters-in-law.  They all died of complications from Huntington’s disease at young ages.

The disease affects children and adults and there is NO CURE.  Juvenile Huntington’s disease, JHD, is approximately 10% of all cases.

Information on HD from Stanford University 

HDSA Northern California Chapter is hosting the 10th Annual SACRAMENTO TEAM HOPE WALK on September 8th.  http://northernca.hdsa.org/ 

Northern California Chapter FB page:  https://www.facebook.com/hdsanocal/

Please support this 5K Walk along the Sacramento at the River Walk Park in West Sacramento; 651 2nd Street.

Adults-$25.00 Children-$10.00.  When registering prior to the Walk, you will receive a HOPE Walk T-shirt and a free breakfast.

To register, click here:   http://www.hdsa.org/thwsacramento 

 

We Can Never Lose HOPE……

Family, Hospice

Hospice Care for End Stage Huntington’s Disease Patients

I haven’t written about Hospice care for awhile, so I thought I’d post this article on the benefits of palliative and hospice care, at the end of life, which applies to everyone, because none of us get out of this alive.

https://www.neurologyadvisor.com/movement-disorders/defining-needs-for-palliative-hospice-care-huntington-disease/article/701506/

The last 10 years of my career in healthcare was in hospice care and it was the most fulfilling work I have ever done in my life.  It was privilege to be allowed into community folks homes to support the patient and family as they prepare for the inevitable loss of their loved one. For info on Hospice care, go to:   https://www.nhpco.org/ 

If you have a loved one challenged with a chronic disease, talk to their doctor about hospice care before there is a medical crisis.  Hospice care is covered under Medicare, Medicaid and most private insurances also cover it.   https://medicare.com/coverage/medicare-cover-hospice-care/

My two sisters-in-law, Marcia & Cindy, we’re patients on the hospice program that employed me.

 

We Can Never Lose Hope……..

Love

Forgiveness

My sisters-in-law, Lora, Marcia and Cindy were my friends, kind, gentle women; they didn’t chose to have Huntington’s disease (HD); it wasn’t their fault.

HD is a fatal genetic disorder that progressively destroys the nerve cells in the brain. There is NO CURE.  It’s like having ALS, Parkinson’s and Alzheimer’s at the same time. http://www.hdsa.org

Fear, anger, sadness overwhelmed me at times and I’m thankful for the counselor I had and for working in the healthcare industry.  I wish I could have done more for Lora, Marcia and Cindy; I did the best I could at the time.  So, after 10 years, I’ve forgiven myself.

Article on:  How to forgive yourself and move on from the past 

“Forgiveness does not change the past, but it does enlarge the future.” ~Paul Boes

                            

“The truth is, unless you let go, unless you forgive yourself, unless you forgive the situation, unless you realize that the situation is over, you cannot move forward.” 
― Steve Maraboli, Unapologetically You: Reflections on Life and the Human Experience

 

Therese at the 2018 HDSA Annual Convention in LA selling her book.100% of the proceeds go to HDSA.

We Can Never Lose HOPE……..

Family

Feeling Alone

People ask me, “Why do you donate your time to help in the fight against Huntington’s disease (HD) when it will not ever affect your family again?” 

Yes, John dodged the Huntington’s disease bullet, he didn’t inherit the mutated huntingtin gene like his three (3) sisters and mother and for that we are so grateful.  http://hdsa.org/what-is-hd/#risk

I do it because I don’t want anyone to feel alone like John and I did when Lora, Marcia and Cindy were struggling with the disease process. In the 80″ & 90″s support groups were non existent and there were very few neurologists knowledgeable about HD.

Today, there is so much support, information, and neurologists available to families so I spend much of my time on social media getting the word out.  Facebook has HD support groups you join and there are many online support groups facilitated by social workers. http://hdsa.org/osg/   http://www.hdscn.org/     https://help4hd.org/

So, don’t give up!  Help is out there!

We Can Never Lose HOPE…………….

 

 

 

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……

 

HDSA Northern California Chapter

The Nonprofit Dear to my Heart

John and I have been connected to the Huntington’s Disease Society of America (HDSA), a nonprofit dedicated to improving the lives of anyone affected by Huntington’s disease (HD) for many years. 

Shana Verstegen with her mother who had HD.

It began long ago, 1978, when John’s family secret was discovered; his mom had HD.  I’ve received newsletters and info from them for over 20 years and we have donated to the organization regularly as did John’s father.  http://www.hdsa.org

So, I’m shouting out about the HDSA Northern California Chapter’s fundraiser on Sept. 8th, the Sacramento Team HOPE Walk.  John and I have created “The Marin Team” and want to raise $1,000.00.   Here’s the link to register for the Walk or to make a donation to the event.  Any dollar amount is helpful in the fight against HD. (HD is a fatal, genetic brain disorder that affects children & adults & there is no cure. It’s like having ALS, Parkinson’s & Alzheimer’s at the same time.)   http://www.hdsa.org/THWSacramento

Another link directly to “The Marin Team” page: https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.participant&participantID=44954  

 We Can Never Lose Hope……

About Author, Family

Knowledge is Power

In January of 1988, after Vanessa was born, John and I decided that I wouldn’t return to work and stay home for a couple of years while the kids were young.   John was making good money at Placer County, and we had money in our savings account, so I was comfortable living on one paycheck. A Walkthrough Guide to Panic Disorder  

At the time, I had two sisters-in-law, who lived locally, challenged by Huntington’s Disease (HD); Lora, severely depressed and drinking herself to death and Marcia, officially diagnosed at UC SF Medical Center two years earlier.  What is HD A few months after I resigned from my management job in Sacramento, I began having panic attacks.  John’s unknown gene status weighed heavily on my mind.  A Walkthrough Guide to Panic Disorder   

To ease my anxiety, I decided to pursue a Masters degree in Healthcare Administration.  Additional education, I felt, made me more marketable, and would replace time lost in the workforce.  I believe knowledge is power and as I studied I became confident that I would secure a job at our community hospital in Auburn, CA which I did in 1991.

The Sacramento Team HOPE Walk is Sat., Sept. 8, at the River Walk Park in Sacramento. To register or make a donation to the event, go to: http://www.hdsa.org/THWSacramento