Sulla famiglia, la forza d'animo e le forze della natura
Il nuovo libro di memorie di Gina DeMillo Wagner, collaboratrice di Know Rare, offre uno sguardo d'impatto su una famiglia alle prese con una malattia rara.
Gina DeMillo Wagner is an award-winning journalist and author who is a regular contributor to 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 had 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.
Mio fratello Alan aveva la sindrome di Prader-Willi, una rara disabilità genetica che gli causava violenti sbalzi d'umore. Un attimo prima era molto affettuoso e un attimo dopo era terrificante. Quando è morto improvvisamente, all'età di 43 anni, mi sono venute in mente alcune domande... La più ovvia è stata: "Che cosa è successo? Credo che molte persone si possano immedesimare in questa domanda: se qualcuno muore inaspettatamente, si vuole sapere cosa è successo. Ma mi sono anche chiesta cose come: "Considerata la sua disabilità intellettiva, sapeva che lo amavo? Poteva sentire quell'amore? Capiva che le persone potevano temerlo ma anche amarlo?
Mi sono anche chiesta se avessi fatto abbastanza come sua sorella e come sua badante durante la crescita. Mi sono chiesta se i sistemi progettati per proteggerlo avessero fallito. Alcune delle mie domande avevano una risposta, altre no, e questo libro di memorie è la mia scrittura per rispondere a quelle domande.
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 the Writer
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 a co-founder of Watershed creative writing and art workshops. She lives and works near Boulder, Colorado.
