What Lurks in the Woods: Struggle and Hope in the Midst of Chronic Illness

by Nicole Bell

Russ and Nicole Bell were an upwardly mobile happy couple: two kids, big house, fun hobbies, marvelous life. But something wasn’t quite right—with Russ. He started forgetting things, he got lost, he became enraged, he was harsh with the kids. And he could no longer be trusted with minor responsibilities.

They visited doctor after doctor after doctor to try to determine what was wrong, to no avail. “Alzheimer’s,” they were told, but that didn’t make sense. Russ was too young for that. As the formerly brilliant engineer literally lost his mind and his self, the answer finally became clear—but was it in time?

In this beautifully written but tragic memoir, Nicole Bell documents their journey through the medical minefield as they searched for answers and treatments. This book will inspire people who are suffering from chronic, symptom-based illnesses to dig deeper, so they can find and treat the root causes of their disease before it’s too late.

Genres: Memoir, Nonfiction, Health

250 pages, Paperback

Published October 23, 2021

About the author

Nicole Bell is a mom and successful entrepreneur who has advanced her professional career as an engineer and program manager. She became an executive in a fast-growing medical device company, where she built a world-class team in surgical robotics. But in 2017, Nicole’s husband was diagnosed with a devastating disease, and she was forced into her most challenging roles yet: caregiver and medical proxy. Unsatisfied with the doctors’ answers, Nicole set out on a journey using her engineering mindset to search for the root causes of her husband’s illness. She eventually found them and sought treatment—a process that changed her and her entire view of modern medicine.

Nicole grew up near Boston and earned a Bachelor's and Master's of Science in Materials Science and Engineering from MIT and a Master's of Science in Biomedical Engineering from Duke University. She currently lives near Raleigh, North Carolina, with her two children and dogs.

Reviews

[Jennifer]

3.5 STARS

[Barbara (The Bibliophage)]

Originally published on my book blog, TheBibliophage.com.

Nicole Bell tells her story of a thriving marriage unexpectedly disrupted in What Lurks in the Woods: Struggle and Hope in the Midst of Chronic Illness. Once I started it, I couldn’t put it down. Bell and her husband have two young kids. She lands a great job, they build their dream house, and things feel on target. Until her husband’s health starts to crumble and Bell must adjust. She tries to pick up the pieces against the odds.

This is a memoir about the hard realities of marriage vows, especially that phrase “in sickness and in health.” Bell marries an older man with a youthful mindset and plenty of smarts. But before their kids hit 10, his cognitive functions take a steep decline. He becomes combative and doctors think he’s facing early Alzheimer’s. Bell needs a solution and soon.

Her story feels conversational, like catching up with a college friend after a long hiatus. Bell demonstrates obvious love and cares for Russ, her husband. But she’s also at her wit’s end and wanting her kids to have a normal childhood.

If you or a loved one live with chronic illness, Bell’s story will feel familiar.

My conclusions
Bell focuses her memoir on how hard juggling caregiving with life feels. But it’s also about what happens when a caregiver loses themselves in the trauma of caregiving. In that way and many others, Bell talks about loss, as well as grieving real-time and anticipated changes. But in the end, it’s also about finding your inner self and inner strength again, despite all the hardship.

Bell uses her technical writing skills to break down the medical explanations in ways that laymen understand. She organizes the disease progression well but also allows readers a lens into life before the crisis so we know more about both her and Russ. And through it all, Bell opens her heart, pouring out emotions amid the conundrums of care decisions.

Because of the easy tone and the suspense behind how she copes, I finished What Lurks in the Woods in under 24 hours. Sure, it’s not long. But I also connected with Bell because of my own life experience.

If you’ve been a caregiver or searched for the right diagnosis and treatment plan, you’ll love this five-star medical memoir.

Pair with The Ghost in My Brain: How a Concussion Stole My Life and How the New Science of Brain Plasticity Helped Me Get It Back by Clark Elliott, Ph.D. While the memoir is quite different, the brain-related connection is strong.

Acknowledgments
Many thanks to Stress Free Book Marketing, Stonebrook Publishing, and the author for a digital advanced reader’s copy in exchange for this honest review.

[Katherine]

It takes courage to lay bare your deepest struggles for all to read. And that is exactly what Nicole Bell does in her memoir What Lurks in the Woods. She does so with complete candor, wit, and intelligence that you can't help but be pulled into her story; feeling her determination and frustrations and grief as she races against the clock to help her husband Russ in the face of debilitating illness. Although there is specificity to her story - Lyme disease and the particular difficulties of caring for a spouse with Alzheimer's with two young children at home - this is a story that should resonate with many people. Those who have been impacted by illness, watched a friend or loved one struggle, borne the emotional and physical burdens of caregiving, navigated a frustrating medical system looking for answers, or readers simply looking to connect with a heartfelt story about love and family. In sharing her story, Bell provides a brutally honest portrayal of illness and a framework for how we think about health, illness, and seeking a diagnosis. I can't recommend this book enough. Five stars.

[Marybeth Crane]

This book is a must read for anyone suffering from a chronic illness or taking care of a loved one. The journey from doctor to doctor was heart-breaking. Nicole is a beautiful writer and keeps you turning the pages of her tragic story. I laughed, cried and cursed; while learning more and more that our medical system is broken. Especially for hard to diagnose chronic illnesses.

[Stephanie Fitts]

This memoir of a young family facing an elusive chronic illness was gripping. The author could be any of us - mother, career professional, neighbor. She faced more than her share of life's challenges when her husband subtly, almost imperceptibly at first, begins his descent into dementia. Her aplomb and humor in keeping all the plates spinning is inspiring. She also takes the opportunity to educate -about tick-borne illness, the gaps in the health care system, and memory assessments. Her urging to "go with your gut", to find healthcare professionals that will partner, and to protect her children from the stress of a parent's chronic illness are messages that will resonate with me for a long time. I recommend this book not only to those facing similar challenges. The author's voice, her humor, and her story pull the reader forward through the pages. Exceptionally well done.

[Carol Ball]

I absolutely loved this book it’s right up my street. I loved how it was written and the way the author doesn’t hold back at all.

The story made me want to laugh, cry, scream, shout but never stop reading - it’s a never ending cycle of joy, misery, love, hate, learning and pain.

I cried when I read how the little boy was treated at school and jumped for joy when a solution that helped was found.

It’s a brutally honest account of a person never giving up or accepting things at first glance. It’s heart wrenching but at the same time it’s totally a love story. Challenging everything the medical professions think they know and the exclusive use of “gold standards” testing. Proves that one size does not fit all!! As a medical person myself, this book made me re-evaluate my own practices and thoughts on a variety of conditions. Thought provoking at its best!!!

This book also demonstrated immense heartbreaking bravery by putting her husband in the home and understanding when her husband found companionship with Daisy.

I thought the six family values were spot on and where she wrote “Only a broken shell remained” is such a clear way to describe the decline of a person with Alzheimer’s

Fantastic book, well written - loved every page!

I received an advance review copy for free, and I am leaving this review voluntarily.

[Em]

Wonderfully written book about a man’s rapid decline in health and how his wife and young family managed to cope with often drastic changes to life as they knew it. It provides a unique perspective on how the author learned to navigate complex medical systems, though ultimately reveals the many gaps that remain in medical diagnoses and treatments for Lyme and other tick-borne infections, as well as dementia. Anyone who has had to live through a family illness will remark on how well the author tells their incredible and inspiring story.

[Sarah Joyce]

Nicole’s story is one of those stories that completely consumed me and I couldn’t put this book down. She tells her heartbreaking and tragic tale with humor, realism, grit, pure love and some hope and optimism sprinkled throughout. It’s really a must read for those of us dealing with or helping others with chronic disease.

[Jean]

Nicole Bell’s memoir, What Lurks in the Woods, deserves more than five stars. It is so well-written that it grabs the reader and doesn’t let go until the end of the acknowledgments. It is a touching account that allows the reader to share a portion of her family’s life. Conscious of spoilers, I won’t discuss the details. I highly recommend this book.

I received an advance review copy for free, and I am leaving this review voluntarily.

[Heena Rathore Rathore-Pardeshi]

What Lurks In The Woods by Nicole Bell is a heart-wrenching and emotional memoir that is hard to read but even harder to put down.

This book is a very realistic and harsh reminder for the reader about how tragic chronic illness is and how it affects everyone including the patient and the caregiver. The author has bravely shared a deeply personal as well as emotionally taxing and psychologically jarring experience of her husband's descent into dementia and how they struggled with finding answers that were crucial to their lives, especially to her husband's health.

This book is very well-written and I would definitely recommend it to everyone because it is a treasure trove of lessons for each and every single reader, no matter what you do, where you are from or who you are.

You can also read this review on thereadingbud.com

[Kristine]

I will start by acknowledging that I know the author — we went to college together — but our paths have not crossed since then and this review is not influenced by that fact (although the book very much reads as Nicole’s authentic voice). I am a notoriously tough Goodreads reviewer and remain so.

This is a heart-breaking and intimate memoir about Nicole’s quest to find the cause of her husband’s changes in behavior and ultimately treat the underlying cause, while raising two young children. Despite the serious subject matter, it is very readable due to moments of humor and nostalgia, as well as Nicole’s honesty. I don’t have any personal experience with the subject matter — either Lyme disease specifically or chronic illness more generally — but it was still very relatable. I imagine it would be particularly so to anyone with personal experience in those areas.

[Tissie]

What Lurks in the Woods is the story of the Bells. Mom, Dad, two kids, a dog - a regular family living a regular life, or so you’d think. There’s something wrong with Russ, and only Nicole’s love and persistence will unveil the truth.

[Keep reading @ Bookshelves & Teacups]

[Drea]

3.5 stars rounded up! As a parent of a child with a chronic illness, this book resonated with me. I could feel the author’s exhaustion and desperation. The impact on kids and self-care was spot on as was the gaps in our healthcare system in the US. “Trusting your gut” combined with research and talking to others is powerful and I appreciated the author’s details about her experience with each of these. That said, at times, this book dragged for me. I feel bad even saying that because of the subject matter and because the author’s heart and soul is in every page. I’m grateful to have received an advanced copy of this lovely book.

[Marit Kirscht]

Kudos to Nicole! This book is a must read for anyone who has a family member or a friend who is experiencing any kind of cognitive decline. Mainstream medicine does not always offer the answers we need but Nicole dug deep in her desperation to find answers for her beloved husband in pursuit of a cure.
This book will make you think and ponder about your own experiences with friends and family with cognitive issues and give you another direction to pursue answers that you never would have thought about.
This is not just a memoir , but a beautiful love story. Nicole’s determination to find the answers to help her husband is quite an interesting journey.
She was relentless and fierce in finding those answers and I believe this book will help so many people who don’t have the answers to their “Why”…Nicole has done all the groundwork that will hopefully help so many people in their own journey of finding the help they so desperately need. Buy this book. It could be life changing for you.

[Robynne Lozier]

Russell Bell was an engineer and had been married twice. His second wife Nicole, was some 20 years younger than he was and he was already in his 50s when his 2 younger children were born.

This is the true story of Nicole Bell's struggle with her husband Russell, after he became ill with Lyme disease.

Lyme is a tick borne disease and is somewhat endemic in the forests and wooded areas of the Appalachian mountains. Russ Bell had grown up being a regular huntsman in the woods of Georgia and North Carolina.

By the time Russell was diagnosed with Lyme disease, he was showing severe symptoms of dementia - called early onset dementia - and losing both his vocabulary and his temper on a regular basis. He was only in his early 60s and had no other chronic illnesses of any note.

Nicole was now trying to raise her 2 children and deal with a high stress engineering job and a chronically ill spouse, all at the same time. This was regularly quite overwhelming.

In May 2019, Nicole reluctantly arranged for Russell to be settled into an assisted living home. She started out visiting him every day, but that eventually dropped back to twice weekly visits. She was also dealing with a stressful part time job, and 2 young children. As a result of their fathers previous outbursts and temper tantrums, the children were now acting out as well.

Then came March 2020 and the Covid-19 Pandemic was announced. We all remember the lockdowns. Nicole was no longer permitted to visit Russell at all, and visits had to be moved to online virtual visits. Russ was not coping at all well with the technology and virtual visits online.

At the time this book was published, in mid 2021, Russell was still living. Nicole has written this book in the hopes that it will help someone else who might succumb to this awful disease. Nicole has wriiten out in great details all of Russell's symptoms and how he acted and how he was finally eventually diagnosed correctly.

Sadly I have to report that Russell Bell died in January 2022. He was just 65 years old. Whether or not he died of Covid complications, I do not know. But there are obituaries for him online. Russell's two young children would have been aged just 8 and 11 years old.

Russell's death is not mentioned in this book, because this book was published before he died.

[Phillip Kang]

Medical memoirs aren’t a sub-genre that’s high on my must-read list. That’s why I’d only read a couple of them (I think) in the past 6 years. These were written by patients who chronicled their descent into a life-threatening illness, their search for treatments, and their eventual recovery. Sadly, one of them didn't live to finish his book, much less to see it published. I remember this book vividly because the story was a heart-wrenching one.

So what made me go for Nicole Bell’s What Lurks In The Woods, another medical memoir? Well, two reasons really. Firstly, it’s written by someone with a different perspective - that of a caregiver. Secondly, it deals with a kind of illness and its underlying causes that I knew so little about. On both counts, I appreciate the awareness that this book has brought about to advance my understanding.

Nicole's memoir allows readers to experience up close the pain and heartache of having to deal with a loved one in the throes of cognitive decline brought on by Alzheimer’s. The narrative is beautifully crafted and captivating, permeated with heartfelt emotions of angst, frustrations, sadness, grief but also joy and hope. The daily struggles that she as a caregiver have had to go through are described in vivid detail. Amid these struggles, she was able to experience poignant and intimate moments with Russ and her kids.

In the book, Nicole shared that she’d always enjoyed writing - a gift that she developed when she wrote real-life stories in her high-school years. Little did she know that she would put this to good use years later when she began keeping journal entries on her husband’s sickness and the chaos that it created in her own and her family’s life. She decided to turn these entries into a book, initially as a project for herself and her loved ones. Then she realized that her story should be shared with a wider audience, especially those who are suffering from chronic illnesses and caregivers, so they can learn from her mistakes and successes. A noble effort indeed, and I’m sure many readers will benefit from the wealth of her experience, as I have. A very compelling read for me. For this, I say, “Well done.”

My thanks to Booksirens and the publisher for the free ARC e-copy. My review is given voluntarily.

[Sue]

How do you describe lucky? Envy? When you look at your neighbors do you perhaps wish you had their life?

Imagine you are neighbors to Russ and Nicole Bell. Both brilliant engineers. Live in the big, beautiful house, two beautiful kids. They lead an admirably active lifestyle, how could you not to be envious?

What IS lurking behind the door of that big, beautiful house? An insipid silent killer. One that affects Russ in troubling ways. Small signs at first, forgetful and confused. Could it be Alzheimers? He is too young. Early onset? Maybe. Even Lyme disease is suspect! How? When was he bitten?

As Nicole takes on the role of medical detective, more questions than answers begin to unfold.

Russ is declining rapidly. He has become sullen, angry. He lashes out at the kids. He is refusing treatment. Nicole is at a breaking point.

What happened to her perfect life? If only she could find the answers, maybe, just maybe she could make some sense of this unknown assailant pillaging her husband's brain.

Being from New England I have known many who have suffered with Lyme disease, but never like this. I never knew there were so many variables. So not only has Ms. Bell written about her experience with Lyme, but readers are made well aware to look further when a diagnosis of Alzheimers has become the standard.

Highly recommended.

I received an advance review copy for free, and I am leaving this review voluntarily.

[Jamie Cha]

I received an advance review copy for free and I am leaving this review voluntarily. It took me longer to read this book than most books. I was fascinated by the topic. I had a mom who had dementia ( even though the symptoms were atypical and not everyone believes she had it).

The book started off strong. I was fascinated by the true story. Learning more about the characters. The author is a good story teller. I could tell she is very organized.

The middle of the book I started to lose some interest. The book was filled with so much data and facts. The book was emotional but it felt like it was telling me how to cure a chronic illness.

I really got into the book at the end. It became the authors story and not a recipe to cure an illness. My mom was in and out of nursing homes. I identified with that part of the story. We have all lived with covid, so that part of the story made it more relatable.

I want to thank the author for letting us into her personal journey. It isn't easy living with a person with a chronic illness. I appreciate her letting the reader into her painful personal battle.

[Kristen]

This is a must read for any person tasked with taking care of themselves or any other human. Nicole is an excellent writer and storyteller. This is an engaging book to read that I didn't want to put down. It is heart wrenching and it exposes what some of us already experienced - you need to be responsible for digging deeper into any diagnosis. It is a call to action. What may be more subtle is that Nicole has an excellent Growth Mindset and is highly curious. As someone who recently went through executive coaching, I saw her thought process and approaches embodying the skills I practice as a result as coaching. It leaves me thinking that the US needs to do better at a) wholistic medicine - everything affects everything. Our doctors are such specialists, it makes it hard for the average person to consider how everything is affecting other symptoms b) teaching and embracing neuroplasticity and growth mindset concepts broadly

[Susan]

What Lurks in the Woods is a book I couldn't put down. Nicole's journey to find the 'why' behind the cause of Russ' illness is a story of her determination, grit, strength, love along with tears, humor and her being real. I could not put the book down and read it again later to see things I didn't fully take in the first time. It is her story but it is also her husband and children's story, too, as they all were living in it. The book will help others who are along this journey to find the root cause of loved ones or their own chronic illness. It wasn't an easy route for sure but from the book you 'see' their story unfold while trying to put together the 'why' of his illness. I smiled, cried, laughed and was pulled in the whole way through the book.

[Nancy]

I found this book to be quite informative. My mother tested positive for Lyme's Disease but fortunately it never developed into Alzheimer's. It was quite eye-opening to find out the many health problems one can develop from ticks and especially how many more diseases there are then just Lyme's.

The family in this book seemed to be financially stable. It just made me think as bad as it was for them how to be less financially stable cope. How many will never even find out their issues are from Lyme's.

It is also concerning how are health care system deals with this issue.

I received an advance review copy for free, and I am leaving this review voluntarily.

[Amy Theaumont]

Nicole Bell writes this heart wrenching memoir while she is leading a company, being a mom to 2 young kids, AND being the primary caregiver of her chronically Ill husband. In the midst of all this, she is able to research Lyme (and other tic borne illnesses) and the best way to treat her husband. She changes the family diet, manages his regiment, and organizes a massive binder with logs/synopsis of his symptoms and behaviors. She is a fabulous writer, scientist, mother, wife, and friend (not in that order).

[Susan Bartlett]

Got this book yesterday and finished it the same day, could not put it down. This memoir is written in a way that captured all my emotions anger, sympathy, laughter and just anticipation of the next chapter. This is not only a story of strength and love but would be helpful to anyone that is dealing with chronic Illness. This author is amazing how with all they were going through was she able to write the memoir.
Will be reading this again

[Paige D]

What Lurks in the Woods is a deeply affecting and honest memoir that explores the devastating impact of unexplained illness on a family. Nicole Bell offers a powerful account of struggle, uncertainty, and perseverance, creating a narrative that is both heartbreaking and illuminating. A meaningful read for those interested in medical journeys and human resilience.

[Christine Wyatt]

I am fortunate to have met Nicole through a good friend. I devoured this book during a long flight. A heart-wrenching book that details their family struggle. So well written and would have no idea this is a first time author. Highly recommend!

[Gina Notes]

Wow. Wow. Wow.

You know I am one for thrillers, but this true-story memoir written by Nicole Bell was on another level in terms of a living in a nightmare.

While I had known my cousin’s husband was diagnosed with Alzheimer’s at a young age and wasn’t doing well, I had NO IDEA the extent of what that meant.

The change in personality from someone you fell in love with to someone you hardly recognize…how that illness affected everyone around him…and how it all made no sense, because he was otherwise seemingly healthy.

Nicole went on a medical deep dive into figuring out the cause of her husband’s illness…tick-borne diseases…and this is a true story of how you really have to be your own medical advocate.

It’s a story of love, of struggle, of family, of illness, of medical research, of Lyme’s disease, and the fight to understand and cure a loved one in need, while struggling to mentally stay “alive” yourself while raising two children and working a full time demanding job.

Nicole bares it all in this soul-opening debut memoir, and I couldn’t put it down.

Watching a loved one go through an illness that cannot be properly diagnosed or treated is truly gut-wrenching as I’ve recently come to understand first hand, and Nicole’s book inspires you to persist, to research, to ask the right questions, and to trust your gut instinct and feeling.

So proud of my cousin for being brave enough to share her story, and I absolutely recommend this book.

[Sarah Brown]

Wow! This is a heart wrenching story that opened my eyes to so much I had no idea about.