Spared

A Memoir of Risk and Resolve

De: Lori Jones

Narrado por: Lori Jones

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 HD, 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. 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.

With authenticity and grit this family’s story spans three generations and touches on topics often underrepresented and yet suffered quietly by those with HD and their caregivers. The author covers difficult and downplayed aspects of what has been called the cruelest disease, with symptoms described as having ALS, Parkinson’s, and Alzheimer’s simultaneously. Listeners will race through this book, release a held breath, and then rewind back to take in parts again, as the author describes with precision the debilitating progression of HD and the humanity that prevails.

©2024 Lori Jones (P)2025 Lori Jones