Nicole Bell Dug Deep to Find the Cause of Her Husband’s Illness

By Nicole Bell, North Carolina, USA

I’ve always enjoyed writing. Even as a little girl, I overanalyzed the world around me. Conversations and events lingered and looped in my brain as if one more spin would unlock a hidden pattern. Life never provided the order and rules that I sought, but writing helped me discern which truths to hold on to and which to discard.

Eventually, the order and rules that I craved pulled me away from writing and toward engineering. Science and math had formulas and laws that described the world around me. One lecture unlocked the answers to thousands of problems, leaving an exponential impact. I was fascinated. After high school, MIT accepted me into their undergraduate program, and my life as an engineer began.

Years later, my slice of the world seemed perfect. My career thrived in a fast-paced, growing med-tech company, the smartest man I’d ever met was my best friend and husband, and I was a mom to two tiny humans who learned new things and amazed me every day. But piece by piece, that perfection crumbled, unearthing a harsh reality. My husband was sick.

I was stunned and confused when he was diagnosed with early-onset Alzheimer’s disease. I followed the rules and paths laid out for me, but they led to more questions. Root causes were a doctrine in engineering but were elusive in medicine. Without them, my husband sank deeper into his illness.

Once again, thoughts circled, but this time the loops seemed infinite. They hovered over me throughout the night, preventing the rest that made sense of even a simple day. I wish I could say that I returned to writing as a thoughtful decision, but the reality was more desperate. One morning, the pounding treadmill in my head drowned out other rational thoughts. I opened my laptop to see if the loop preferred to run on the page. As it turned out, it did. Day after day, I typed, scribbled, and recorded audio when the words were too hard to face in print. Frantic journal entries poured out of me and helped me cope with the chaos.

Storms eventually pass, but once mine did, I still felt broken. Writing helped me escape the loops but didn’t provide answers. Illness destroyed truths that I held dear, and only fragments and pieces remained in their place. I felt compelled to sort through the mess, process our journey, and discern what new truths had revealed themselves.

After a lot of thought, I decided to turn my journal entries into a book, What Lurks in the Woods: Struggle and Hope in the Midst of Chronic Illness. At first, it felt like a project for me and those I loved. That would be enough. But the more I wrote, the more I processed, the more I distilled, I realized that wasn’t enough. I eventually found the root cause of my husband’s illness, and it lay in a place that doctors never thought to look. My husband’s illness wasn’t an unsolvable mystery. His rapid descent was preventable, and countless others experience the same fate.

I wrote so that people suffering from dementia could see my mistakes and successes and learn from them. I wanted them to trust their gut and realize that they’re not alone. And if our story could help them see the signs, or ask the right questions, or find their root causes and answers sooner—well, maybe it would all be worth it.

About the Author

Nicole Bell, author of What Lurks in the WoodsNicole Bell is an author, entrepreneur, and advocate for tick-borne and neurodegenerative diseases. She advanced her professional career as an engineer and program manager and spent the past 15 years in medical devices and medical technology. Nicole served as the Vice President of Research and Development at TransEnterix, now Asensus Surgical, where she built a world-class team in surgical robotics and led the company’s worldwide product development efforts. But when her husband became chronically ill, she left that position to take on her most challenging roles yet: caregiver and medical proxy. Her memoir, What Lurks in the Woods, details the harrowing experience and seeks to help others navigating chronic conditions.

Originally from Boston, Massachusetts, Nicole 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 an adorable rat terrier.

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