Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington's
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.
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.