Spared: A Memoir of Risk and Resolve

by 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? 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, 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.

Genres: Memoir, Medical

402 pages, Kindle Edition

Published July 15, 2024

About the author

Lori Jones personally experienced the effects of Huntington’s Disease (HD) in her family and was instrumental in starting Team Hope Fox Valley events to raise awareness and support for research and community programs through the Huntington’s Disease Society of America (HDSA) – Wisconsin Chapter.

A storyteller at heart, she regularly writes and speaks about her experiences with HD and many other topics to groups of all ages.

Lori has three adult children and lives with her husband Chris in Wisconsin, when they aren’t escaping to their cottage in Michigan’s Upper Peninsula to enjoy kayaking, hiking, and campfires.

This is her first book.

Reviews

[Jennifer · Rating 5 out of 5]

What struck me most about this book is the honesty and grace that the author (full transparency, I've known her for 20+ years) weaves throughout her story telling. The impact of her father's disease on her and her family as the years go on is a constant theme but not one that overpowers the book. The worry and strain is there but just as a sorrowful feeling in the background. And even with what she's going through, she still practices empathy for others. She's pulled back the curtain on something she only let some people know for a long time. The blend of her memories and facts about Huntington's Disease (HD) is very well done. She provides enough detail about HD so that those of us who aren't familar with the disease can understand it but doesn't overpower the reader with techincal and medical terminology. A truly touching memoir that shows how to come out on the other side.

[Katie McLennan · Rating 5 out of 5]

I loved this book! The author's story-telling is engaging and relatable, tackling some big things with honesty and vulnerability. I found myself staying up til the early morning hours more than once, telling myself "just one more chapter...!"

[Shanen Sadowski · Rating 5 out of 5]

Couldn’t put it down. I picked this book up when I needed a light read and although the chapters were addictively short and her vulnerability endearing, it was anything but light. Jones shares the impact of Huntington’s Disease (HD) on her family and what it was like growing up with a father who was “different” and chaotic, without having a name to define it. She shares stories, both sweet and heartbreaking, that challenge the reader’s perspectives, prejudices, and apathy toward those who don’t behave within the acceptable constraints of our society. Whether you love someone with a horrible disease which steals from their essence such as HD, Alzheimer’s, or Parkinson’s, or an addiction or Severe Mental Illness (SMI) like Schizophrenia or Bipolar Disorder, this book will resonate and encourage you to accept support, face the stigma, and lean into advocacy. If you’re blessed enough to not have walked this path personally, it will increase your awareness of and empathy toward those who have.

[Malissa Chapin]

A well written memoir about a daughter's journey through her father's battle with Huntington's disease.

[Linda Foster · Rating 5 out of 5]

Living with any chronic, life-threatening disease is not an easy path in life. It doesn’t just affect the person with the disease, but those closest to them as well. Lori describes in detail what it was like growing up with her father having Huntington’s disease. There’s fun and happy times, but anxiety and eggshell-walking, with a lot of stress. Sadly her father had other blood relatives afflicted with the condition. When there’s no cure, the outlook is bleak. Testing is possible to check for a specific DNA change in the HTT gene. Children have a 50/50 chance of having HD. Many offspring actually find it something of a dilemma as to whether to have the test. Lori’s relationship with her dad shifted when she was older and took on responsibility for him, thankfully supported by her loving husband. Lori also describes her early working days, which involved her interacting with HD patients. This memoir is open, honest and raw. It is well written, flows easily, and it is beautifully narrated by the author herself. Interesting and informative. Highly recommend.

[lisa · Rating 3 out of 5]

A sobering look at life with Huntington's Disease. Lori Jones grew up knowing there was something in her family that caused fear and suspicion among her relatives, but it was never talked about openly. Instead, she watched as various members of her family began displaying frightening symptoms, and as her father suffered from various ailments that were eventually connected to HD. Jones grew up so traumatized by her experiences, that she had trouble facing her own connection to the disease, which she knew she had a 50/50 chance of having, or passing along to her own children. From reading the end of her book it sounds like it's still an ongoing process. (She also never mentions if her sister ever got tested for the gene mutation that causes HD.) The book is harrowing, but the short chapters are easy to get through, and the story never feels bogged down. Jones is a white, upper-middle class Christian woman, and I usually don't relate to memoirs written by them, but she never comes across as overly privileged or judgemental, so I found myself extremely sympathetic to her. (The few times she does have judgements, she's quick to check herself in a way that felt real, which I appreciated.) I was surprised by how much I liked this book, and how much I admired Lori Jones for sticking with her journey to define and accept this terrible disease that has tried to tear her family apart.

[Judy Middleton · Rating 5 out of 5]

This gripping all-too-true memoir is heartbreaking and enlightening and what makes it special is the honesty, love, wit and insight at the forefront of each page. I cannot imagine all that the author, her sister and her mother went through. I’m stunned by their resilience which brings hope to anyone going through hard stuff.

I love her much needed philosophy about good and bad news. Brilliant! I highly recommend this book to anyone looking for hope and seeking to understand how to deal with the curve balls life often throws us.

[Barbara · Rating 5 out of 5]

Poignant storytelling, yet written with great faith & courage. The short 'chapters' are smooth reading. Congrats Lori, your book brought emotions to the forefront and elevated an awareness.

[Muse Literary Publishing · Rating 5 out of 5]

In Spared, a daughter watches Huntington’s Disease slowly steal her father while carrying the terrifying knowledge that she might be next. With unflinching honesty, she maps the secrecy, shame, and fierce love that shaped three generations, turning private grief into a public act of courage. Part memoir, part survival guide, the book weaves heartbreaking caregiving scenes with clear-eyed science and ethical questions few dare to voice. By the last page, you’ll feel you’ve walked beside her through every tremor and triumph, and come out believing that even in the cruelest lottery, the human spirit can still choose how to play its hand.

[Martha Graham-Waldon · Rating 5 out of 5]

Sparred Facing the Fear Lori Jones
In this memoir the author and her family bravely face the specter of a disease that waits on the side lines of their lives. I learned a lot about Huntingtons Disease by reading this book, like how people can still function with it in the early stages. Of course, they have good times and memories like any family. Having grown up in a family with mental illness, I could relate to her struggle to keep her secret throughout her school years. After many years and with the support of her community, she faces her fear of the illness, her former enemy, and becomes an advocate for other families facing the same challenges. She bravely maintains a positive relationship with her father even as his health declines. I was inspired by this memoir and admire the author for facing her own fears, surviving and ultimately thriving.

[Jill Robbertze · Rating 5 out of 5]

The synopsis really covers all that this wonderful medical memoir is all about, so what I want to add is more about my own feelings. Firstly I think that this story is not only a tribute to Lori's Father but also a book that will continue to raise awareness of Huntington's Disease. Prior to reading this book I knew almost nothing about this horrible disease and just how much it impacts families.
I'm so happy that Lori has such a wonderful and supportive husband that helped her to navigate the logistical and emotional difficulties that she has lived through.

[Patricia · Rating 5 out of 5]

Spared is the memoir we didn’t know we needed: a brutally honest portrait of loving someone through Huntington’s Disease while staring down your own 50% odds. The author writes with the precision of a scientist and the broken-open heart of a daughter, making the reader feel every involuntary jerk, every hushed family secret, every impossible choice about testing and having children. It’s heartbreaking and fiercely hopeful, this book belongs on every shelf beside Being Mortal and The Bright Hour. I closed it grateful, shaken, and oddly braver.

[L Fors · Rating 5 out of 5]

Few books have the guts to look a hereditary death sentence straight in the eye and still find light. Spared does exactly that—chronicling a childhood steeped in “The Shakes,” decades of living at-risk, and the exhausting grace of becoming your father’s guardian as the disease finally wins. The writing is spare yet tender, the science never overwhelms the story, and the love on every page is ferocious. Whether you know Huntington’s intimately or not at all, this memoir will rearrange something inside you and leave you holding your own family a little closer.

[Kelsey Keller · Rating 5 out of 5]

Heartfelt read. It gave such a perspective of the emotional toll of taking care of someone with an awful disease while also educating about it and bringing awareness. The chapters goes so quick.

[Brooke · Rating 5 out of 5]

A memoir written with integrity, grounded research, and vulnerability, all while holding intact the dignity of those involved. Wow. The stories pull you in and along. The facts about Huntingtons bring further depth and knowledge, shining light on a disease not often understood. A truly skillfully written book designed with eloquence and powerful purpose.

[Julie · Rating 5 out of 5]

How do you rate a book sharing their life story filled with emotion, compassion, and struggles. Definitely eye opening and informative on Huntington’s disease. Look forward to meeting the author at our next book club night.

[Carol · Rating 5 out of 5]

Lori Jones tells of growing up with her father having Huntington's disease. She has and older sister who may have never gotten tested. But she also had a pedigree of relatives on her father's side who dotted the family tree with suffering from Huntington Disease. It is only the person who has who suffer. The spouse and the children endure so much.

She describes it like having Parkinson’s, ALS and Alzheimer's at all once. It also has some Bi-Polar thrown in. My dad had Bi-Polar. Unable to retain a job, her father has to quit looking for employment so he became the stay at home parent for his two daughters. She has some good memories of him but most of the time is was like walking on eggshells. Her mother worked all night as a key punch operator. He could not stand to hear certain noises, smells and so much more. He had constant mood swings, never hurt her but he smashed holes in the walls.

Lori Jones Jones cautions that Huntington DIsease effects people in different ways, this is her father's experience, very different from her paternal grandmother.

It is taking me longer to read it because I have to pause every now and then. Now I realize that the spouses and children of people with that disease are going through so much. I hope that that there is more care so the family can get breaks. Her childhood was something to endure and had many terrifying moments.

Many questions are brought up, should people with Huntington['s in their family marry, get tested and have children. It is easy to understand why getting tested is so scary. Of course, a relief if you did not inherit it but if you did, is your life over.

Heartbreaking life situations and shame over having it in your family, the stigma is great. Families want to hide it out of self protection.

This is a little off subject but one reason why this book meant so much to me.
I learned so much about this terrible disease and I can empathize with her over the time when her father was in a group home. I have a severely autistic brother in group home. I had to decide whether I could take care of him when my mother died. I knew I would have to give up work, it is impossible when the person you are caring for need 24 hour care. Did I feel guilty. Yes, I did but I knew that I could handle it. There are big problems from relatives of people in group homes and there is basically no ready help unless you are lucky. I was not notified that my brother had been moved to new address. It was a difficult four days until I finally got the answer about the move and where he now is.

[Deidre Edwards · Rating 5 out of 5]

As someone who supports family caregivers, I have heard a lot of background stories about how a family became a caregiving family. This memoir reflects a journey no one should have to take, but about 30K people in the US are currently diagnosed with Huntington's Disease (HD), and their children are a blood test away from knowing if they have inherited this incurable disease with a 50/50 chance that they would be positive.

When the author shared that HD is like having Alzheimer's, Parkinson's, and ALS simultaneously, it took my breath away. As she described the patchwork quilt of how her father manifested his symptoms, my heart melted as her story unfolded - first told through the eyes of a little girl just trying to "not upset Dad" on through every stage of her formative years through to the present time.

Lori Jones takes us through not only her journey with her dad, but through the stories of her extended family back generations. Each case of HD expresses itself uniquely and inexorably to its final, terminal end. With HD in the gene pool, family members have additional mental and emotional concerns about getting tested for having inherited HD - the ramifications of knowing/not knowing are mind-boggling.

Dealing with the psychological effects of living with someone - especially undiagnosed and not helped by medical approaches that might have blunted the symptoms - is openly presented by the author as she so honestly shared what therapies have helped her own psychological recovery. Even if family members are "spared" from this devastating diagnosis themselves, they are not spared from the aftermath of living around someone with HD.

This should be a must-read for clinicians, caregivers, patients, families, and anyone involved with HD. My understanding of HD has been blessed by Lori Jones' narrative.

[Julie Haigh · Rating 5 out of 5]

A wonderful and powerful memoir. 

Medical memoirs really interest me. I have read many, so it's good to find one concerned with a rare disease, and something I didn't really know anything about.  

I had only heard of Huntington's Chorea (as it was known then), or Huntington's Disease, on an Australian daytime drama series, 'Sons and Daughters', and hadn't read about a family affected by it before, so I knew I had to read this straightaway.

This was good writing. It was easy to read, very engaging, and well-told.  Although about 400 pages, it's fast-moving as it's constructed of quite short chapters, and these really keep it moving along. I thought I'll just have a quick dip in-but was soon engrossed, and couldn't stop reading. To have one family member affected by something so devastating is terrible..... but to have more than one member is just unimaginable.

This was so beautifully written. Honest, and well-balanced as it contains childhood memories; some happy times, as well as the more difficult times.

Huntington's is a rare disease-but if a parent has it, their children have a 50% chance of getting it. Rare, but it can affect multiple members in a family.

I appreciated the mentions of music of the time; it really helps to create the atmosphere; the full picture of the time, the memories, I enjoyed these.  As a musician, for me, it really adds to a book, e.g. when authors say the car radio was on-and they tell you exactly what was playing then.

Memories, heart-warming, and heart-breaking.  Such detail, and emotion.  Sad. Poignant.  Such a powerful memoir.

[Lpockat · Rating 5 out of 5]

Great true story about living with a father that has Huntington's Disease. As difficult as it was to read about two young girls growing up in a household where they didn't know what to expect from one day to the next, I'm sure living it was so much harder. There were so many rules, no friends, no open windows, curtains shut, no doors could be shut, no noise, stay out of the kitchen- and then finding out that they could inherit this HD causing gene! I could understand their desire of wanting to escape this home and have a different life. This is the authors first book, and was a great read - learned so much about this debilitating disease-great research! Hope I see more books by this author in the future!

[Sue · Rating 5 out of 5]

I have never read a medical memoir before, so this was a read into the unknown.

I learnt such a lot about Lori and her family having to cope with the awful Huntington's disease, how it affected her entire life and the positive, often emotional steps she took to deal with it.

Set out in short, well written, manageable chapters. I found once I started it I could not stop reading until the very end. What a brave woman you are Lori and such an inspiration to other writers in similar circumstances. I gave Spared a well deserved 5 stars.

[Ann Campanella · Rating 5 out of 5]

I love the short, intense chapters of this book and was captivated from the start. There is so much tension in this book from the very beginning, knowing that Huntington’s Disease lurks in the background. Viewing a father’s gradual descent into illness and seeing his erratic behavior through the eyes of child and seeing how it molds her world is a gripping experience. I felt the emotions of the author throughout her story and especially as she grapples with the decision of whether or not to get tested herself. An inspiring, beautifully written and deeply affecting memoir.

[Erika Daye · Rating 5 out of 5]

This was such a moving memoir. The author did an incredible job transporting the reader into her life and I often felt like I was in the room with her…listening and watching. This was a beautifully written book and it opened my eyes to the struggles individuals and their families experience as they navigate HD. I am so thankful Lori shared her story.