Lori Jones

The Art of Truth Telling
Spared: A Memoir of Risk and Resolve


A Memoir of Risk and Resolve

Memoirs showcase and celebrate human resilience. We applaud those who have struggled through insurmountable difficulties and surfaced on the other side, but no amount of moxie, gumption, or pulling yourself up by bootstraps will 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 her father 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. The children of a parent affected by HD have a 50% chance of inheriting the HD-causing gene. She must battle ethical considerations. Should she marry? Should she have children? Living at risk for HD is called the “tortured hope,” for enduring the risk of being positive teams with the chance of being negative, one making the other bearable. Should she undergo presymptomatic testing, revealing her future?

As her grandmother, great-aunts and other extended family members continue to decline with 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 learns that she is not alone and is able to give back while experiencing the support of a shared struggle.

With authenticity and grit this family’s HD story spans three generations and touches on topics which are often underrepresented and yet suffered quietly by those with this rare progressive disease and their caregivers. Readers learn firsthand 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 how to get involved in efforts for ongoing research, raising awareness, and increasing community support. Readers universally relate to their own life experiences with family members who have suffered decline from an illness, with the added twist of the hereditary element, as HD caregivers are often also at-risk.

"I felt the squeeze, not financially, but in the stress of balancing my family, trying to keep positive with the kids and explain why this Grandpa wasn't a part of their lives, and yet commanded so much of our time. It constricted my heart, the utter despair of witnessing him slowly lose his dignity collided with the accumulated hurt, resentment, and shame from a lifetime with this inadequate father. It was the daily fear and paranoia that I would wind up in the very same boat. If his erratic behaviors were the result of HD, all the self-control I could muster wouldn't stop this from happening to me, would it? No, the squeeze was not a sandwich, it was better described as a Panini. I felt pressed on both sides with a hot iron and believed that any day now my insides would surely melt."

294 pages