I picked up This Boy We Made because it combined all of my passions: medicine and genetics, writing and memoir, ruminations on fate and race and family. I tried to read it like a medical chart. Taylor Harris didn’t let me. The book’s first chapter opens with her son Tophs’ first crisis. An ordinary morning is upended when he emerges from his crib drowsy, lethargic, and refusing all food but sucking down water as if at an oasis in the desert. As his heart beats visibly under his small toddler sternum, he falls asleep during a diaper change and Harris takes him to his pediatrician’s office. Alarming lab results send Harris and her son careening to the ER, where Tophs’ blood glucose is so low that the medical team wonders aloud why he isn’t having a seizure. “Here’s the history of present illness,” I thought to myself. The next few chapters continued to slake my medical curiosity. Harris writes about the diagnostic tests run on Tophs at the hospital, recalls his floppy newborn body and surprising difficulty with breastfeeding, and ponders the childhood seedlings of her own anxiety disorder. I thought, “Here are the pregnancy and birth history, the medical history, family, developmental, social.” But in response to my knee-jerk attempt to follow my training and neatly file away the facts of Tophs’ existence, Taylor invited me to stay awhile, to walk with Tophs out of the clinic, out of the examination room, and into his home, his life, his world.
When I was in medical school, there was an assignment that involved shadowing a patient and their family through a full day of clinic visits: meet them at the double doors, accompany them to one waiting room after another, sit on their side of the medical Iron Curtain, listen as harried doctors and nurses asked questions and dispensed advice. I don’t remember the exact reasons why (med school feels like a lifetime ago), but I never had to do this assignment. I was secretly grateful. What right did I have to walk alongside these patients? To witness their pain, their frustration, even their joy? As I graduated and went on to residency and independent practice, I would repeat this refrain whenever the emotions of my job threatened to overtake me: This is their story, not mine. I believed I had no right to those emotions. Several years of clinical practice had begun to chip away at this armor. This Boy We Made demolished it.
Through a carefully constructed history, Harris unearths the story of a boy and a family, and asks what it means to be imperfect but still whole. The story of her family’s diagnostic odyssey weaves from the unique to the universal. Tophs has an initial episode of ketotic hypoglycemia, his body responding to low blood sugar by creating extra ketones for energy, and no one seems to know why. A search for answers leads Tophs and his family to one specialist after another. His development is delayed, but not stalled. He has features of autism, but doesn’t meet diagnostic criteria. Finally, a comprehensive genetic test that should have pinpointed the cause of Tophs’ medical problems instead brings Harris face to face with her own mortality. Along the way, whenever his family thinks that Tophs has outgrown his ineffable disease, another episode occurs, new symptoms arise, and Harris grapples with the deep uncertainty of being undiagnosed.
In so many of Harris’ turns of phrase I recognize patterns from stories my patients have told me: the devastating toll of an offhand, dismissive comment from someone in a white coat, a mother’s desperate search to pinpoint the cause of all her child’s ills, the burden of having to explain your child’s medical history to one skeptical observer after another, the combination of gratitude and dissatisfaction when the doctor tells you that your child’s symptoms are “weird but not necessarily dangerous,” the shattering of the illusion that we frail humans have any control over the things that happen to us, the paradoxical relief and disappointment when a diagnosis cannot be found. On the other hand, I also recognized the comfort of “find[ing] a home in [a] diagnosis,” and the pain when that diagnosis, which seems to fit so well, is snatched away by a negative test.
Harris’s writing defies generalization. In her renderings of her husband and children, we see characters who are particular and dear: the self-assured young man who courts his future wife lovingly and patiently, the reserved girl who observes her surroundings keenly and knows that her younger brother does too (“It goes in his head, Mommy”), the playful boy with impeccable rhythm like his father (I’ve had Lorde’s “Royals” stuck in my head for weeks) whose personality sometimes disappears in frighteningly unpredictable episodes that sweep over him like an awful shadow. Her loving descriptions move beyond lines in a medical chart (“accompanied by his mother and father”; “the second of three children born to his parents, older sister with anxiety and younger sister growing and developing well”) and draw her experience into the specific.
As she reaches backward to understand her son’s mysterious body, Harris plumbs the depths of her family line to find the thing that started it all, the moment when the problem entrenched itself and became inevitable. This family excavation recalls Morrison in The Bluest Eye, pinpointing that fateful couch that was purchased brand new yet arrived ripped down the middle and became the symbol and source of a family’s misery. We return again and again to the refrain of “like begets like.” Harris turns it over in her hands like a multifaceted geode, examining it from all directions. What traits do her children inherit from their parents? Can we control what we pass down to our offspring? What happens when like does not beget like? Does it absolve a mother of her guilt, or lay the blame more squarely at her feet?
Throughout the book, Tophs and his family occupy a liminal space, the yawning chasm between mysterious symptoms and genetic diagnosis. For people who inhabit this realm, Harris deftly notes that “life [can] feel like one large waiting room.” Yet she finds a way to bend the liminal into the luminous, claiming the joys of “mothering a gift unknown”: the focus on a present-tense love (“Enjoy him. Hold him. Stay right here.”); the reprieve offered by a life undiagnosed, an escape from “the settled grief of knowing” that accompanies a named syndrome; the beauty of her toddler’s shadow suspended in mid-air, poetry in stopped motion, occupying neither heaven nor earth. My medical training compels me to try to pull Tophs out of the “unsolvable space.” Names of genes and polysyllabic syndromes dance through my mind as Harris tells me about her son, and I quickly enumerate the factors pointing toward and away from the potential diagnoses she raises. Yet as she finds peace in an undiagnosed life, she teaches me to see the beauty there as well.
Ultimately, this is a book about facing one’s fears. So many of us think that if we stay away from the thing that scares us, we will never be touched by it. Medicine has taught me that nothing is further from the truth. That’s why I prefer the genetics clinic over the ICU. Amidst the “grief clinging thick” of a genetic diagnosis is the absolving knowledge that what happened to you was always there, written in your source code. You could not have escaped it. But it’s also not your fault. “These differences in our bodies . . . aren’t going anywhere, at least not because I ignore them.” Harris asks us, “[W]hat do you do when the fear and risk and percentages are all real, all rational?” The answer, of course, is that we keep living. “Maybe doing something is a mix of science and faith, of hard work and prayer, of searching and disappointment.”
Perhaps the most lovely portions of the memoir are Harris’s meditations on the frightening “fragility of our bodies.” She wrestles with this concept throughout the story and her life, beginning with an anxiety disorder that firsts manifests in girlhood. As she struggles to control her worries, a young Harris finds “God in the absence of fear.” But as life unfolds through unpredictable detours, she comes to realize that if we want to keep our faith, we must learn to see the divine even in our sorrow, grace in our grief. She asks what it means “to live in bodies that can betray us, bodies designed by a God we believe is fully loving, holy, and near.” Her writing on this topic sparkles with liturgical wonder: “God was once on this earth in a suffering human body,” “Bodies created from dust can hold glory,” “Bodies can be broken and contradictory and still worth something.” Here, as it does throughout the book, Tophs’ innocent wisdom offers an anchor: “A lot of things have happened to me, and I am perfectly made.” We would all do well to listen to the experiences of those living with chronic illness. Reading This Boy We Made made me a better doctor. It will make you better, too.