How a mysterious illness broke apart a family

Wagner’s elder brother, Alan, who died in 2016 at the age of 43, had been diagnosed as a child with Prader-Willi syndrome, a rare genetic disease that affects metabolism and behavior. Although his body grew to reflect his age, Alan’s psychological development slowed during the siblings’ childhood in Atlanta, leaving him almost entirely dependent on others. Though little was known about the disease during Alan’s childhood, symptoms of his illness were evident throughout his life. Sweeping in unpredictably, those symptoms overwhelmed Wagner’s mother, a housewife. Though it is impossible to diagnose exactly what lies behind a divorce, it is easy to imagine that the weight of Alan’s illness proved too much for his parents to bear together. Their split, which resulted in the absence of the author’s father and a yawning emotional gap from her mother, runs through Wagner’s life like a fault line.

“The forces that create faults are compression, movement, expansion, and gravity,” she writes, employing a metaphor that recurs in the book. “Whenever something is under pressure, weighted down, vibrating, or grating against itself, trying to move in opposite directions — things crack. Fractures occur. Destruction. New geographies are formed.”

The new family geography that arose after the split found Gina taking on the household responsibilities to fill in for the parental lack. Alan was prone to overeating and volatile moods (people with Prader-Willi prove nearly insatiable and lack impulse control), and Gina, in her telling, often found herself on the receiving end of his destructive rage. We cannot always recognize trauma while we are living through it, and you get the feeling that, long after the fact, Wagner is hesitant to call what she lived through traumatic even as she relives harrowing scenes on the page. It may be in part because of the nature of Alan’s illness; childlike on his best days but swelling with extra-human strength when enraged, he could not be held fully responsible for the pain he inflicted on his sister.

She does not fault him for the volatility his disability created, instead looking to the natural world to draw parallels, especially the creation of the Rocky Mountains, a region she now calls home. “I think about the core attributes of a person, their own personal bedrock,” she writes. “Their personalities, their fundamental traits seem solid unless acted upon dramatically by some outside force.” In Alan’s case, that external pressure was from the patrilineally heritable disease. For Wagner herself, the outside forces are numerous: her brother’s rage, her mother’s neglect, a school counselor who recognizes that something is wrong in the family. When the pressure eventually exerts itself too intensely, Wagner decides to leave her family before even finishing high school, estranging herself for decades to gain control over her life.

All this time later, there’s a palpable melancholia as Wagner works through her brother’s death and the process of mourning a person she loved dearly, despite the injury and anguish he caused her. “No one talks about what grief looks like when the relationship you lost was fraught,” she writes. “No one admits that a relationship with someone who is dead can be just as complicated as the relationship was when they were alive. There was suffering then, and there is suffering now.”

With a tinge of survivor’s guilt, Wagner ruminates on Alan’s last days, seemingly looking to ensure that her absence from his life did not, in a roundabout way, end it. Yet it’s hard to know what assurances might assuage her. Wagner is reluctant to accept the explanation that doctors give her of natural causes, a reluctance matching the uncertainty that relatives of those with rare diseases face when so little is known about their loved one’s medical condition.

Ultimately, instead of finding greater answers to Alan’s death, Wagner lands in the uncomfortable position of having to confront the complicated choices she made in removing herself from the family: “The deeper question is not whether Alan could have survived longer, but how did I survive all those years?”

It’s a question that readers themselves might ask as Wagner retells the story of her childhood from the vantage point of an adult reuniting with her family for her brother’s funeral. Faced with her parents in the same space again, she finds herself navigating new family fault lines. Vacillating between reflective adult observations and recollections from youth, she also reckons with her present: Could she have created a happy family of her own had the mother of a high school friend not witnessed her pain and taken her in as a teenager, providing a path for escape?

The memoir thus becomes a lovely meditation on how families are formed within hostile landscapes. Wagner is a talented stylist, limited only by an inability to explain the inexplicable — in this case, less her brother’s rare disease than her parents’ behavior. She contemplates what might have been had her mother accepted more responsibility, had her father taken a greater role in their upbringing. “Maybe his death was no one’s fault,” she writes. “Just as the abuse was never our fault, his or mine.”

In the end, this is not a story of what-ifs but rather what-nows. With the earthshaking news of Alan’s death, the shape of Wagner’s life becomes clearer — in her metaphor, it is like a landscape, which “forms a complete picture, even with its holes and valleys and rifts and green and blue debris.” From above, she writes, you can make sense of it in a way impossible on the ground. It’s this bird’s-eye perspective that provides Wagner and her readers some much-needed closure.

Courtney Tenz writes at the intersection of conflict and culture, covering women’s rights, the arts and European travel.

Forces of Nature

A Memoir of Family, Loss, and Finding Home

By Gina DeMillo Wagner

Running Wild. 310 pp. $19.99