Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington's

by Therese Marie Crutcher-Marin

Overview

Therese Crutcher-Marin’s world was turned upside down when she learned that her fiancé, along with his three sisters, were all at risk for Huntington’s.

Huntington's disease is a devastating inherited condition that produces a combination of neurological, motor, cognitive and psychiatric symptoms. It’s been compared to having Parkinson’s, Alzheimer’s, and ALS all at the same time. There is no cure.

In her new memoir, Watching Their Dance, Crutcher-Marin shares her deeply personal story of marrying into a family at risk for Huntington’s. “Some lives seem to move smoothly along a natural continuum, with one event or decision seeming to slide into the next,” she writes. “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.”

Crutcher-Marin tells of her soul searching and her fears as she contemplated a life of unpredictability: her fiancé and each of his siblings had a 50-50 chance of developing a fatal wasting disease that had no test, no treatment, and no cure. She shares the great happiness and joy she experienced when she took a leap of faith and married the love of her life, along with the tough choices and pain that became part of her life as one by one her sisters-in-law slowly succumbed to the disease.

Watching Their Dance is a truly inspirational story of hope as Crutcher-Marin shares the path she has chosen may be difficult but it has opened her heart to love more deeply and made her life that much richer. What Therese learned from the Marin siblings could never be found in a book, a classroom, a religious setting, or a therapist’s office. Forty years ago, Crutcher-Marin took the biggest gamble of her life by keeping these people in hers, and it made her the person she is today.

Therese Crutcher-Marin is a member of the board of directors of the Northern California Chapter of HDSA. She lives with her husband John in California.

 

 

 

Product Details

ISBN-13:	9780998442228
Publisher:	NorCal Publishing Company
Publication date:	04/15/2017
Sold by:	Barnes & Noble
Format:	eBook
Pages:	312
File size:	973 KB

About the Author

No one could have written Watching Their Dance but Therese Crutcher-Marin. Therese multitasked for years: working fulltime, raising two children, coping with her husband's at-risk status for Huntington's disease, and eventually managing the care of two sisters-in-law and observing the decline of the third. Therese earned her college degree in business administration with a concentration in marketing and went on to work in management in Sacramento. Later, knowing that at least some in her husband's family would develop Huntington's, she chose to pursue a master's of science in healthcare administration, and later worked as head of support services of the Auburn Faith Community Hospital hospice program. Her goal: to empower people with the knowledge and resources to maintain dignity, quality, and control in their lives until their final breath. Therese managed more than two hundred hospital volunteers, which strengthened her community-outreach program, and established two revenue-producing entities for the Auburn Faith hospice program, the hospice thrift store and Hospice Healing Garden, both of which continue to fund the hospice program. She has been a member of numerous boards and committees, including the Placer County Commission on Aging, the Older Adult Advisory Committee, and the Sacramento Hospice Consortium. During her healthcare career, Therese developed and implemented yearly marketing plans that included newspaper articles and ads, quarterly newsletters, brochures, radio and TV appearances, and talks to clubs, service organizations, and professional associations. She taught a class called Born Dying at Sierra College, in Rocklin, California. She published The Placer County Senior Resource Guide, now in its twentieth year of publication. Being a part of the Sacramento Suburban Writers Club fueled her desire to improve her writing, as did the critique group she participated in for two years. This is her first book.

Table of Contents

Table of Contents

1. The Marin Family Secret 11

2. Huntington’s Disease 20

3. The Neurologist Visit 30

4. Walking Away 37

5. An Epiphany 43

6. The Biggest Gamble 50

7. Life at Risk 58

8. The Four Marin Siblings 62

9. The Canadian Sister 70

10. Twitches 76

11. The Demons Within 83

12. A Long Way From Home 92

13. A Genetic Marker 104

14. Baby Keith 116

15. Return to Work 124

16. The Accident 131

17. A Neurological Exam 142

18. A Pre-Symptomatic Test for HD 149

19. Marcia’s Bravery 156

20. Ways to Lower Anxiety 161

21. A Path of Self-Destruction 168

22. A Cerebral Hemorrhage 172

23. The First Loss 180

24. The M.S. Degree 187

25. Closer Is Better 197

26. Quality of Life 202

27. Anticipatory Grief 212

28. The Wanderlust Aunt 221

29. Watching Their Dance 229

30. Crohn’s Disease Speaks Out 239

31. John’s Heavenly Gift 249

32. A Father’s Love 260

33. An Advance Healthcare Directive 270

34. Accumulated Losses 284

35. A Gift 291

Epilogue 301

Afterword 304

Huntington’s Disease Update 306

Acknowledgments 308

About the Author 311

Editorial Reviews

"Watching Their Dance is a heart-wrenching tale with HOPE as the key ingredient for survival." Jake Dowell, professional hockey player and Huntington's disease advocate. "Flip of a Coin" was a documentary produced by ESPN in 2013 about Jake and his journey through genetic testing.

"Tears, laughter, blessings, and hope....an amazing story that will touch, and help, I pray, everyone who reads it." Trey Gray, drummer for Reba McEntire and Brooks & Dunn and HD advocate.

"Therese Crutcher-Marin's story of a life at risk adds a new voice to Huntington's disease literature." The team at HOPES, Huntington's Outreach Project for Education, at Stanford University.

"Fatal and untreatable, Huntington's disease has been called the mother of all diseases, and those affected suffer from a devastating set of symptoms similar to those of ALS, Parkinson's, dememtia, and Alzheimers's combined. Watching Their Dance offers a compelling glimpse into the lives of an HD family, navigating a world of loss and fear with courage and clarity." Kate Miner, actress, musician and HD advocate.

From the Publisher

2017-04-26
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. A poignant remembrance of a love forged in crisis.

Kirkus Reviews