Undiagnosed to Death: How My Mother's Writing Captured Our Family's Hidden Battle with Huntington's Disease - Paperback

by Audrey Roberts (Author), Darlene Gaynor (With)

Someone you love is struggling with what seems like personal failures. But what if they are actually fighting the most challenging battle of their life?

For years, Audrey Roberts watched her mother, Darlene, struggle with unexplained symptoms, mood swings, job insecurity, and rapidly declining health. The spirited woman within began to disappear. Despite years of trying to get answers from doctors, she went undiagnosed for most of her life with a debilitating illness: Huntington's disease (HD).

This book explores the devastating impact of HD on family relationships, as Roberts grappled with years of resentment and misunderstanding which gave way to guilt and regret. The diagnosis reframed everything for Roberts, revealing that behaviors she had attributed to irresponsibility and apathy were actually symptoms of a progressive genetic disease.

The shining beacon in all of the darkness: Darlene was a writer. She wrote poems, songs, and romance novels. She poured her heart and soul, her pain and joy, into words on the page. Roberts intertwines intimate family stories with her mother's writings, piecing together a portrait of a woman who channeled her pain into creativity while battling an invisible illness. With the help of her daughter, Darlene's words remain a legacy of her lifelong battle with HD.

Undiagnosed to Death examines the importance of early diagnosis and advocacy in healthcare, generational trauma, and the power of writing as a coping mechanism. This memoir, full of family history, is a testament to resilience, the healing power of creativity, and the enduring strength found in love despite overwhelming challenges.