Spared - Lori Jones

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Résumé :

Memoirs celebrate human resilience. We applaud those who struggle through insurmountable difficulties and surface on the other side, but will any amount of moxie, gumption, or pulling yourself up by bootstraps escape a mutated strand of double helix?

Spared: A Memoir of Risk and Resolve follows the account of a young girl who witnesses her father's descent into the psychological and physical deterioration of Huntington's Disease (HD), a hereditary, neurological, degenerative illness which has minimal treatments and no cure. The author grows up in a household of uncertainty, secrecy, and shame, and by overhearing the adults speak, she gains limited understanding and a respectful fear of what Dad calls The Shakes.

Leaving her environment to forge a fresh start in her adult life, she learns more about the hereditary nature of this disease, and dreads that it might very well be following her. Each child of an affected parent has a 50% chance of inheriting the HD-causing gene. She must battle ethical considerations. Should she marry or have children? Should she undergo pre-symptomatic testing, eliminating the tortured hope, for enduring the risk of being positive teams with the chance of being negative, one making the other bearable?

As her grandmother, great-aunts and other family members succumb to HD, she assumes the role of guardian for her father. He cycles from one adult care home to another, while she advocates for his needs and his dignity. Through an encounter with the greater HD community she is able to give back while experiencing the support of a shared struggle.

With authenticity and grit this family's story spans three generations and touches on topics which are often underrepresented and yet suffered quietly by those with HD and their caregivers. Readers learn how delayed diagnosis and concealment can adversely affect a family, bringing isolation and contributing to poverty. The author doesn't hold back, covering difficult and downplayed aspects of what has been called the cruelest and most heartbreaking illness, with symptoms described as having ALS, Parkinson's, and Alzheimer's simultaneously. She discusses living at-risk, ethical considerations of pre-symptomatic testing and procreation, the impact of religious faith, survivors' guilt, caregiving, guardianship, and organ donation.

With ample scientific facts and genetic information, Spared: A Memoir of Risk and Resolve is a resource guide that reads like a story, and shines as recommended reading for institutions of higher education offering courses on mental wellness, human services, and sociology. Families affected by HD and caregiving agencies alike will find a book that speaks difficult truth and yet brings hope, with information on navigating the healthcare system, raising awareness, and increasing community support. Readers universally relate to their own life experiences with family members declining from an illness, with the added twist of the hereditary element, as HD caregivers are often also at-risk.

The reader will race through these pages, release a held breath, and then page back to take in parts again, as the author describes with precision the debilitating progression of HD and the humanity that prevails.