Dancing in the Face of Death: A Journey of Love, Caregiving, and Courage amid a Dementia Diagnosis - Paperback
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A story of choosing love, integrity, and courage when life changes everything
When Susan's partner, Barbara, was diagnosed with the behavioral variant of frontotemporal dementia (bvFTD), a fatal genetic brain disorder, life as they knew it took an unexpected turn. In Dancing in the Face of Death, Susan encapsulates their journey through this life-changing diagnosis, beautifully weaving together the challenges of caregiving and illness with the power of love and living intentionally.
This intimate memoir follows Barbara's experience as the first person in the US to receive a gene replacement in her brain as part of an FTD clinical trial. Even as Susan and Barbara navigated the changes and challenges brought by this disease, they continued to live with integrity, commitment, and courage. Susan captures both the most heartbreaking and heartwarming moments of their life together while also shining a light on the difficulties of anticipatory grief as a loved one changes before your eyes.
Dancing in the Face of Death is both a celebration of Barbara's fight for a cure and an effort to raise awareness for FTD, a condition that is often misdiagnosed and inaccurately treated. Susan and Barbara's story is a testament to how strength, devotion, and love endure-even in the face of loss.
Susan L. Koen, PhD, was born and raised in the southern United States, especially her adopted home of New Orleans, but as an adult chose to make New England her home for forty-four years. She especially loves Maine, where she still has a summer cottage. In 2020, she became a permanent resident of Mexico and now resides most of the year in the pueblo mágico of San Miguel de Allende in the Central Highlands north of Mexico City.
Dr. Koen is an organizational psychologist, entrepreneur, and author/creator of both leadership and workforce training programs that utilize applied neuroscience. For decades she was an internationally known expert in optimizing worker health and safety and preventing human errors in twenty-four-hour and 24/7 workplaces, including manufacturing, mining, energy, and utilities operations.
Since retiring, Susan has focused her time on writing creative nonfiction, including her memoir as well as essays published in The Sun Magazine and other journals. You can also find her thoughtful writings in the blog section of her website at https: //www.susankoen.com and in her LinkedIn posts at https: //www.linkedin.com/in/susan-koen/.
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