By Sarah Werthan Buttenwieser
Because I knew Gina DeMillo Wagner first in the blogging space, When I learned she’d written this memoir, Forces of Nature, I knew I wanted to speak with her for Motherwell.
Chronicling complicated grief: hidden family experiences
Sarah Werthan Buttenwieser: First, this is a gorgeous book that I could not put down. While it’s about disability within a family and the toll of being a sister to a disabled person, making it a complex family story, I wonder whether there was a specific audience you had in mind while writing it.
Gina DeMillo Wagner: My brother Alan had a rare genetic disorder that caused him to veer from loving to violent. When he died suddenly, I was pulled away from the safety of my adult life and thrust back into a family I had been estranged from for nearly ten years. Forces of Nature follows this rewinding of the past, my caregiving journey and reckoning with complicated grief. It’s a personal story that asks universal questions: How much of our selves should we sacrifice to those we love? Can nature nurture us when people can’t? And what forces shape our sense of family and home?
In 2018, I published an essay in The New York Times called “Mourning the Loss of a Sibling Rival” which tapped into an unrecognized audience: Siblings and family members who want authentic, honest, nuanced stories of living (and dying) with disabilities in their myriad forms, both visible and invisible. Very little has been written from the perspective of siblings to people with developmental disabilities or chronic medical conditions. And yet, one in five families have at least one child with special needs, according to the National Institutes of Health.
So, siblings were my first audience. But since the book came out, I’m hearing back from a much broader readership: Folks who have faced the challenge of loving difficult people without abandoning themselves in the process. And parents who want to break generational cycles of harm, create new versions of family, and become the mothers and fathers they always wish they’d had.
Writing to affirm existing and enduring
SWB: Can you talk about how you traveled from living as a sister and daughter in your family to writing about it, to choosing to publish a memoir?
GDW: I’m not sure writing about my experience was ever a conscious decision. Writing was survival, a way to see myself, to confirm that I actually existed. From about age six, I understood that being a sister and daughter in my family meant that I was invisible apart from the care and support I could provide. There wasn’t room for me to have needs or be seen, because someone else always needed more. By writing things down, I could be my own witness and tend to those heavy emotions.
SWB: How did figure out—or did you even need to—which part(s) of your family story are “yours?”
GDW: I think one of your tasks as a memoir author is to build guardrails that define where your story ends, and another’s begins. It’s an intuitive process, and the boundaries will be different for everyone. But for me, as I was writing, there was a visceral sense whenever I crept too far into another perspective. That nagging discomfort helped me stay in my lane.
The journalist in me also wanted to make sure that everything I wrote was verifiable. This is impossible with memoir, of course. There’s always going to be details and dialogue you’re constructing from memory. But still, I rigorously fact-checked myself. I interviewed childhood friends, teachers, and extended family. I consulted with social workers and rare disease experts. I reviewed public records and medical files. I combed through old journals and photographs and family documents. In the book itself, I tried to be transparent about what I know and admit to what I don’t know.
SWB: Because memoir, especially one like this, is so personal to other people, in this case, your family, can you talk about how you approached the questions of privacy, owning the story, and whether you asked or informed (or did neither) about the sharing of your story?
GDW: For privacy, I changed most names and some identifying details. I had honest conversations with people who appeared in the book and compared my recollections to theirs, but I didn’t show them pages. The only people who had access to the manuscript in advance and full veto power were my husband and kids.
Advice to parents and caregivers
SWB: If you were talking to someone with more than one child with one child whose needs are exceptionally consuming to the parents and family, do you have general advice or framing that you’ve come to after your family’s less-than-ideal experience?
GDW: It’s interesting, because I’m a parent now to two teens, one of whom has a chronic medical condition and learning differences. Nothing as extreme as what my brother faced, but it’s allowed me to see as a parent how difficult it is to balance the scales when one child has exceptional challenges. Even in the healthiest of families, the able-bodied child tends to over-function. They mute their needs because they sense that someone else needs more.
My best advice is to name it. Communicate honestly, validate each family member’s experience, and be willing to hear their painful emotions without defensiveness or judgment. Don’t paint over the messy feelings with positivity and gratitude. Make room for all of it.
Beyond that, resist the urge to put the typical child in a caregiving role. As parents, we like to see our kids looking out for one another, sticking up for each other in public, nurturing one another. That can be a beautiful thing to witness. But beware making it a child’s job.
Finally, as a parent, make sure you have healthy adults to lean on so that you’re not tempted to lean on your kids. My therapist likes to call this “the committee.” Every parent should have a committee of support, with members playing different roles. That might include therapists and doctors, other parents, close friends, extended family, coaches, teachers, caregivers.
Similarly, find outside support for your typical children. They need safe spaces and safe adults outside the home where they can be themselves apart from their sibling.
My experience growing up was extreme. There was significant abuse and neglect. But I often wonder if things might have been different if my mother had sought professional help, or if the other adults in my life would have had the courage to intervene. With any kind of childhood trauma, it’s not just the thing that happened that’s so awful. It’s the isolation, the secrecy, and the denial of what happened.
SWB: Do you imagine that ten or twenty years beyond your childhood, this specific diagnosis within a family land differently—or is knowledge of it not enough to shift much?
GDW: There are treatments and resources available to Prader-Willi families now that did not exist when Alan and I were kids. He wasn’t diagnosed until adulthood, so we missed the opportunity to explore early interventions, like hormone and behavioral therapies. I’m not sure if those treatments would have made a huge difference in his symptoms. Like most genetic disorders, PWS presents on a spectrum, and his symptoms and behaviors were on the severe end of that spectrum. But the diagnosis certainly would have given us a framework to understand him better. We might have had more language to describe what was happening in our family.
Child becomes parent
SWB: It’s clear that your childhood experiences, like all of ours, makes a meaningful impression upon how you are as a parent: have you continued to reflect upon how it shapes your perspective and actions? Also, curious whether the process of writing this book changed things for you as a parent.
GDW: When my kids were newborns, there were moments when I feared I’d make the same mistakes my parents did. But pretty quickly I realized that was impossible, because of the life and relationships I’ve built for myself. My husband and I have been able to create an abundance of love and safety for our kids, and I’ve tucked my inner child in beside them. One of the greatest gifts of motherhood for me is that it’s given me a front-row seat to the childhood I wish I’d had and the sibling relationship I wish I’d had.
I still feel waves of grief—not just for Alan, but for all the losses of my childhood, the lack of nurturing and safety. Writing the book, the way I toggled between the past and present, gave me more compassion for myself and helped me honor that grief. On one page, I’d be writing about my son at age six and a few pages later I’d be reflecting on myself at age six. That mirroring was powerful. Seeing how easy my children are to love and protect made me realize just how much I deserved love and protection too.
Writing the book also gave me more time with my brother in a sense. By the end, I felt like I got to know him better and understood our relationship better.
Gina DeMillo Wagner is an award-winning journalist and author. Her writing has been featured in The New York Times, Washington Post, Memoir Magazine, Modern Loss, Self, Outside, Writer’s Digest, and other publications. She is a Yaddo Fellow, 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 an instructor at Lighthouse Writers Workshop. She lives and works near Boulder, Colorado.
Sarah Werthan Buttenwieser has written for The New York Times, Washington Post, Boston Globe, Human Parts, Grown and Flown, Salon, American Craft and other publications. She graduated from Hampshire College and the MFA Program for Writers at Warren Wilson College. She lives and works in Northampton, Massachusetts.
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