In Honor of Huntington’s Disease Awareness Month: a new book about love, fear, and living with HD

I don’t post on this blog enough; anyone who follows here, knows that. As I’ve noted in the past, fear keeps me away. If I hide my eyes, maybe it will go away? It, being Huntington’s Disease.

Anyone living with Huntington’s Disease knows that’s not true. HD follows us, and messes with us, inspires and drives us. If you have Huntington’s in your family, you know there is no hiding! This month, I want to honor my sister and my dear friend Sarah Parker Foster. Check out Sarah’s blog Huntington’s Disease And Me. She writes with visceral honesty and shares her journey with us all. In the past few weeks she has suffered an unbearable setback, and I am sending my love and support her way! Check out her work and add your love.

My family was blindsided by HD. My grandmother was a powerhouse and true icon in the world of Massachusetts’ realtors, for more than two decades. She was named top realtor in the state of Massachusetts, for the top real estate company in the state, for sixteen years! This, at a time when women were still making their way into this area of business. I grew up enormously proud of her, and hugely impacted by her. She helped raise me, and was the solid person in my life. She taught me to shake hands firmly, to make a mean pumpkin chiffon pie, and to be kind to others. I think we all both adored and feared her… she was a huge presence in our family and the community.

When she started tripping, while showing houses; walking strangely; forgetting things she’d always remembered, and a myriad of other strange changes, everyone assumed she’d developed a drinking problem. Family and friends urged me to look for drugs and alcohol, they all believed she was hiding, when I spent summers living with her, during college. I found nothing, and she grew worse.

When my grandmother was finally diagnosed with Huntington’s, our entire family went into denial. We didn’t know what it was. We were overwhelmed with the idea that anyone or anything could impact my grandmother in such a way, and none of us believed it would impact us too. We were an entire family of ostriches–– even after the hard reality of watching Grandma sink into herself, and eventually die of HD. We stayed paralyzed as my mother was diagnosed, but took more notice. By the time my forty-nine year old aunt died (my mother’s younger sister), after only a short nine months with rapid symptoms, we all were terrified. My mother’s illness was prolonged and horrible to watch. My younger sister is living with HD.

A few months ago Therese Crutcher-Marin read one of my posts here on the Huntington’s Chronicles, and contacted me. She has written a powerful new book, Watching Their Dance: Three Sisters, A Genetic Disease, and Marrying Into a Family At Risk For Huntington’s (buy here). The book looks at her husband’s family history with HD. It begins before there was testing–– when love was a leap of faith, and brings us to the present. Anyone dealing with this horrific disease may benefit from reading her book.

Therese Crutcher-Marin went into her marriage knowing that HD was a risk. In fact, she ran toward it, for love. At a time when there were no tests for HD, she embraced the man she loved and hoped for the best. Her new book looks at that decision, and it’s enormous impact.

I wanted to know more, and Therese agreed to be interviewed, for Huntington’s Disease Awareness Month. We both wanted to have this interview come out much earlier in May, to honor and bring awareness to the illness, but two busy schedules made that difficult. In the end, we both agreed that for those of us living with Huntington’s, EVERY month is Huntington’s Disease Awareness month! Purple and blue are the colors for HD. Wear them for someone you love, who is fighting this devastating disease.

Tell us how you first learned about Huntington’s Disease.

In 1978, John Marin, my college sweetheart, and I were graduating from college and planned to be married. His three older sisters, Lora, Marcia and Cindy, who had become my close friends, couldn’t explain to me why their mother had been in Napa State Hospital for 20 years. They asked their father but he would not tell them. The sisters contacted an aunt on their mother’s side of the family, whom they hadn’t seen in years, and on November 3, 1978, the Marin secret was revealed to us. Phyllis, their mother, had Huntington’s disease

Did your husband have a history of HD in his family, prior to that?

Their mother’s side of the family had a history of HD but their father knew nothing about it when he married Phyllis.

How did you and your husband’s family deal with this news, initially?

The Marin siblings grew up with a lot of uncertainty in their lives: a father who was absent, uncaring, and abusive, so the news was just another uncertainty in their life. I remember the day the sisters told us about Huntington’s, and how it was not a big deal to them. I struggled with the thought of John having the disease and questioned whether I was strong and brave enough to live a life at risk with him. I ended our relationship because of it. After having an epiphany, I found my way back to John recognizing the possible consequences of my decision. In my heart I realized if John did become ill or his sisters, “you take care of the ones you love”. Through the years, the Marin siblings never wanted to talk about their at risk status, which was difficult for me, but that’s how they coped, dealing with things only when it became an issue.

Do you have children? How did you deal with this threat?

John and I have two children, Keith and Vanessa. We married in 1980 when there was no test to determine John’s gene status so we chose to take a chance and have children. We hoped and prayed John didn’t inherit the mutated gene but if he did, we believed there could be a therapy or cure for our children by the time they reached the age to show symptoms.

I can totally relate to that! I think most HD families can. So many of us went into this, thinking there would be a cure, before it ever impacted us. How did you tell your children?

Since we cared for John’s sisters, our children watched their aunts through the disease process. When we felt they were old enough to understand, we talked with them about John’s at risk status and how HD could possibly affect their lives.

Have you always been a writer? What were your reasons for writing the book?

I was the marketing/outreach manager for a hospice program in my community and wrote newspaper articles, quarterly newsletters, business plans and enjoyed interviewing patients and sharing their stories. When I retired, I pursued my writing interest and joined two writing clubs, participated in writing seminars/classes and joined a program, Path to Publishing, through a local bookstore.

The initial reasons I began writing my story was to heal and to honor my three dear friends and sisters-in-laws. After the last sister died in 2009, I began to develop my story. Over the next couple of years, I decided the book could be used as a marketing tool to heighten awareness and help in the fight against Huntington’s disease. At that time, I began developing my own social media outreach campaign to connect with the HD community. After working with an editor for two years, and the completion of the book was near, John and I decided to donate 100% of the proceeds from the book to Huntington’s Disease Society of America (HDSA).

Bravo to you! We need more, meaningful stories out there, addressing Huntington’s. What is the theme of your book? 

The major theme of my memoir is mindfulness; focusing on the present moment. Being present in the moment/day calmed my fears and worries about the future. Hope is also a theme as that is what John, myself and the sisters clung to and gave us strength to not give up. Unconditional love is another theme, one that is closely related to forgiveness. Over time, I learned to assimilate these concepts into my daily life, which allowed me to live my life fully with John, his sisters and my children.

How did you write an inspiration story of hope from such a tragedy?

My story is inspirational because of the four inspirational people I kept in my life. Through the love, kindness and friendship Lora, Marcia and Cindy bestowed upon me, I was compelled to share my story. Before the Marin siblings even knew about Huntington’s disease, the sisters were an inspiration because of their positive attitude, ability to forgive, and kind behavior. They were my dear friends who loved me unconditionally and I was closer to them than I was to my own three sisters. As I journeyed through the disease process with each of them, they continued to inspire me through their strength, tenacity and never lost hope. Forty years ago, I took the biggest gamble of my life by keeping these people in mine, and it has made me the person I am today.

Who was affected with HD in your husband’s family?

Huntington’s disease has devastated John’s family for five generations. His maternal grandfather had HD and four of his six children inherited the disease. John’s three sisters were affected and fortunately had no children. John tested negative last year at age 61, which means our children are not at risk. The disease will never harm another Marin.

What is the current statuses of your husband’s family members?

Unfortunately, Lora, Marcia and Cindy have passed away. Lora died in 1989 at age 41, Marcia in 1999 at 49 and Cindy in 2008 at 54. Lora committed suicide, and Marcia and Cindy fought the disease for fourteen and seventeen years respectively.

As I’ve shared with you, I work for Hospice too. It isn’t always easy, and there can be a lot of “triggers.” With your sisters-in-law dying from HD, why did you choose to work in hospice? Wasn’t it depressing?

In 1988, I changed careers, received a Masters In Healthcare Administration and entered the healthcare industry because I knew I would be caring for at least two of the Marin siblings and I wanted first hand knowledge. I spent the last ten years of my career in hospice. To the contrary, I found hospice work encouraging, gratifying and I felt honored to support a family through the loss of a loved one. I believe I was lead into hospice work to keep me mindful of all the good things I had in my life.

How do you manage your own anxiety about the illness?

The Marin siblings were extremely close and each sister-in-law lived with us during difficult times in their lives. During stressful years, I saw a counselor and sharing my struggles was very helpful. John and I have always had a special relationship and love each other deeply because something like HD can tear you apart of create a bond so strong nothing can destroy it. So, John was my anchor and we drew strength from each other especially during difficult times. Early on in our marriage we decided to do the things we wanted to do, when we had the money, and not wait because we didn’t know what our future looked like. When the kids arrived, we continued our adventures with the goal to make as many wonderful memoirs as we could with them.

Are you involved with the HD community outside your family?

For over 25 years, John and I were helping/caring for one of my sisters-in-law while we worked fulltime and were raising two children so my time was limited. I became involved in the HD community three years ago and I joined the HDSA Northern California Chapter Board of Directors last January. I’m in line to become Chapter President in 2019.

What are some of the ways you and your husband address his HD risk? What coping strategies can you share?  

I began writing the story to show the world what it is like to live at risk for a genetic disease. I share how my life was filled with unpredictability, tough choices, and pain, and yet full of love, good times and great happiness. I came to realize that the path I willingly chose, opened my heart to love more deeply; that acknowledging my world could change overnight made my life richer. To find out how we coped for 38 years, living at risk for HD, you’ll have to read my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.

Could someone with cancer, going through a divorce, or losing a loved one find inspiration from your book?

We all have challenges to overcome in our lives and they come in many forms; a serious medical condition, a divorce, an autistic child, financial devastation, a difficult teenager, death of a parent/child/spouse or living at risk for a genetic disease like Huntington’s disease.  Watching Their Dance is a story of a young woman who learns to live with unimaginable uncertainty by making changes in her life so she could live happily and as fully as possible with the man she loves.  By readingWatching Their Dance a reader will be: inspired, filled with hope, learn about mindfulness, and be empowered to make changes in their life.

Therese, thanks so much for taking the time to share your story with me and readers. I know it will inspire others! 

I’m grateful for the chance to share the book, and chat with you. Thanks for making space here. 

The honor is truly all mine! It is an incredible thing to share your story, and help others. Good luck with the book, and all my best to your family. 

KIRKUS REVIEW

A debut memoir focuses on a family wrestling with the genetic legacy of Huntington’s disease.

Crutcher-Marin met her future husband in 1976 while they both attended junior college in California—it took no time for her to be captivated by him. Then, a few weeks before Thanksgiving, John’s three sisters called a meeting and revealed that while visiting an aunt they discovered the family was plagued by Huntington’s disease, a debilitating neurological disorder. John’s mother, Phyllis, and three of her siblings—four out of six overall—suffered from it. The odds that John would eventually come down with it were about 1 in 2, and there was neither a test to definitively diagnose it nor a cure to combat it. When the author met John he was 21 years old, and, generally, the symptoms start to appear between the ages of 30 and 45. Overwhelmed by the prospect that such uncertainty would forever haunt their lives, Crutcher-Marin reluctantly left John, a move encouraged by her own family. She even briefly dated someone else. But she couldn’t bear the separation and eventually returned to his embrace; they wed in 1980 and had a child. But the threat continued to loom over them like a storm cloud, and two of John’s siblings did eventually grapple with, and die from, the terrible affliction. This is a story more about the power of hope than the wages of Huntington’s—a pre-symptomatic test for the disease eventually hit the market, but John refused to take it. As he explained: “I’d rather live my life with the hope I don’t have the mutated gene than find out I do.” Crutcher-Marin writes affectingly about the way her marriage was actually fortified by its precariousness—she learned to love more deeply in the shadow of her husband’s mortality. She also tenderly portrays the plight of his sisters—beleaguered not only by the deadly genetic inheritance, but also difficult childhoods stained by loneliness and abandonment. This is a rare treat—a true story that is as uplifting as it is heartbreaking.

For other personal stories on HD, check out Life Interrupted, Living the unimaginable, Huntington’s Disease patients and caregivers share their truth of strength, courage and perseverance, as they travel the rocky road of what has been called the worst disease known to mankind. My friend Sarah has a chapter in the book!