A must-read new memoir from Know Rare contributor Gina DeMillo Wagner provides an impactful glimpse into a family navigating a rare disease.

Gina DeMillo Wagner is an award-winning journalist and author who is a regular contributor for Know Rare. Know Rare is pleased to celebrate the release of her memoir, Forces of Nature: a powerful account about family, caregiving, home, and resilience. 

Gina’s brother had Prader-Willi Syndrome, a rare genetic disorder that caused him to veer from loving to violent. When Alan died suddenly at age 43, Gina was pulled away from the safety of her adult life and thrust back into a family she has been estranged from for nearly ten years. Forces Of Nature follows this rewinding of the past, Gina’s caregiving journey and reckoning with complicated grief, plus Alan’s Christmas-themed funeral, and an investigation into his cause of death. It’s a personal story that asks universal questions: Where are the boundaries of familial love? How do caregivers find their voice? And, what forces shape our sense of family and home? Ahead, Gina shares what inspired her to write this powerful memoir.

My brother Alan had Prader-Willi Syndrome, a rare genetic disability that caused him to have violent mood swings. He would be really loving one minute and really terrifying the next. When he died suddenly at age 43, I was left with some questions… The most obvious question was what happened?  I think a lot of people can relate to that question — if somebody dies unexpectedly, you want to know what happened. But I also wondered things like, you know, given his intellectual disability, did he know that I loved him? Could he feel that love? Did he understand that people could fear him but also love him? 

I also wondered if I had done enough as his sister and as his caregiver growing up. I wondered if the systems designed to protect him had failed. Some of my questions had answers and some didn’t — and this memoir is me writing toward those questions. 

Very little has been written from the perspective of siblings to people with developmental disabilities or chronic medical conditions. And yet, about one in five families have at least one child with special needs, according to the National Institutes of Health. That means there are millions of siblings out there, and many of them participate in caregiving. 

I wanted to write a memoir that would honor Alan and our relationship, but also shine a spotlight for anyone who grew up in a complex family where someone else always needed more. I wanted to show that it’s ok to name your experience and embrace the full spectrum of emotions, that it’s ok to have needs of your own, and that you can find your voice and place in the world. 

Read more about Gina and her book on her website.

ABOUT GINA:

Gina DeMillo Wagner is an award-winning journalist and author. Her writing has been featured in The New York Times, The Washington Post, Memoir Magazine, Modern Loss, Self, Outside, CRAFT Literary, and other publications. She is a winner of the CRAFT Creative Nonfiction Award, and her memoir was longlisted for the 2022 SFWP Literary prize. Gina has a master’s degree in journalism and is cofounder of Watershed creative writing and art workshops. She lives and works near Boulder, Colorado.