I hold my 4-year-old daughter’s hand as she lies on the cold surface of the X-ray table, watching her brow furrow as she concentrates on holding her left ankle at the awkward angle in which the technician placed it. This is, for her, an exciting experience, something about which she feels only curiosity.
She asks questions, interested in the machine’s unseen rays, eventually expressing dismay as it becomes apparent that these events will unfold without something new for her to feel or see. But it’s hard for me to focus on anything besides the slight bump that I can see on her left shinbone above her ankle.
The bump is both new and old: family history repeating itself in a new body. I don’t need to see the X-ray film to recognize this as the first visible sign of the genetic bone condition I inherited from my mother, finally answering the question hanging over my daughter Freya’s head since birth: On which side of the genetic coin toss would her life fall?
The X-rays are done, the diagnosis confirmed and we are free to go, but it’s hard for me to leave the clarity that only this room can provide. I’m filled with an irrational desire for sentience from the X-ray machine: Tell me everything.
Now that this question has been answered, a host of others replace it, and I want them all resolved immediately. How many other tumors are growing? How many operations will she need to have? How much longer will she be able to move her body effortlessly through the world without pain?
The particular burden and blessing of genetic disease is that the provenance of the issue is clear: This pain that your child will feel is 100 percent the result of having been born to you.
The cause is the flawed gene that I inherited from my own mother, who must surely have felt the same way I do upon finding out she had passed it on to both her children.
Our particular genetic condition, hereditary multiple osteochondromas, causes benign tumors to grow near the ends of the long bones of the body, interfering with bone growth, restricting joint motion, pressing on nerves and causing pain. The only treatment is surgical removal, something that pleases the logical mind: essentially a problem of addition and subtraction.
But despite their eventual removal, tumors near the growth plates often restrict bone growth, leading to uneven limb lengths and other bony deformities, and it’s not feasible for each one to be removed. The 10 operations I had as a child and adolescent left scars on my ankles, knees, hips and shoulders that remind me daily of what was once there that should not have been. The mark of the condition extends beyond the scars to a limp that worsens when I’m tired and joints whose restricted movements reduce the fluidity of my path through the world.
I’m a physical therapist. In my field, we measure joint movement using the term “range of motion,” and applied more globally it seems an apt descriptor: My body’s path through the world is slightly restricted and narrowed — no marathons or yoga for me.
I first felt the telltale bump on my daughter’s ankle a few days earlier, my fingers interrupted on their familiar, casual path down her leg during a quiet moment before bed. At that point, the question of genetic inheritance had almost faded from my mind — neither my daughter nor her older brother, at age 7, had shown any signs of the disorder. At that moment I felt a metaphorical page turn: life spinning me around and setting me down, wobbly and unsteady, in a new, unchosen place. Except this place was as familiar to me as my childhood home.
I don’t want Freya to have this disease, but there’s something strangely uncomfortable about the idea of wanting her not to have it. That thought surprises me with its complexity: What once seemed clear is less so now that the card has been drawn. Who would I have become without these experiences?
It’s impossible to subtract this key element from my life and imagine the same result. My childhood experiences in physical therapy were the reason I chose this profession. I’m thankful daily for the gift of a body that does most of what I want it to do, recognizing this as a privilege denied to so many and one taken for granted by most.
I am resilient, confident that I can go through challenges and emerge different, but stronger. O.K., then: With no need for denial and my anger quota filled by larger world events, I settle in at the bargaining stage of grief.
In the car on the way home from the radiologist I close my eyes and picture myself pulling Freya out of an imaginary line where the children of the world wait patiently for their allotted burdens and ailments: We’ll take this disease! Sign her up for this. She’d be lucky to escape with only this minor inconvenience. I make a note to poke and prod my son when he gets home — maybe there is something there that no one has yet noticed; maybe he too can exit my fictitious trauma handout line.
We stop at a park and Freya leaps out of the car, a blur of motion, running fearlessly, confident and strong, her joints sliding effortlessly, the muscles and ligaments unobstructed. Watching her, I rethink my earlier wish for omniscience. I want her to go back to being a blank slate, her future a sparkling unknown. There is now something menacing yet familiar on the horizon, something that was once mine but is now hers, and its shape and stamp on her life cannot be predicted.
Until they weaken or break, it’s easy to forget that our bones hold us up against the weight of the world. Later that evening, impromptu, Freya tells us that she wants to be a skeleton for Halloween, that she plans to wear her glow-in-the-dark skeleton pajamas.
She puts them on for bed and zooms around the house, the simplistic outline on the material masking the complexity of the reality beneath.
The story they will tell is ours to shape and narrate. In it, the main character is running.
Danielle Levac is an assistant professor in the department of physical therapy, movement and rehabilitation sciences at Northeastern University.
