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bones

It stands silently and elegantly and reveals  its secrets if you ask the right questions.

—Dr. Frederick S. Kaplan, orthopedic surgeon, authority on fibrodysplasia ossificans progressiva, 1998

Harry’s first skeleton was the one he was born with. That was the healthy skeleton of a small boy. The only odd thing about this skeleton was that it had a bulbous bony protrusion on the left big toe; aside from that it was ordinary. His bones were ordinary bones: they were made of living cells and had marrow inside them, like the bones of fish, birds, mammals. There’s a photograph of Harry as a six-year-old, wearing shorts and a T-shirt, knobbly-kneed, with a lopsided smile and sticky-out ears. His blond hair is roughed up like he’s just come in from running around or riding a bike outside with his sister Helene.

It was around the time of this photograph that a second skeleton began to grow around Harry’s first skeleton. This bone, too, was ordinary bone. But it was heterotopic: in another place, the wrong place. The only time in our lives that ossification—the transformation of cartilage into bone—should occur is when we are inside the womb. No new bones are supposed to grow once a person is born. They are supposed to be whole then. But it was as if this second skeleton of Harry’s was working to shelter the first, as if the first were too fragile to continue going along on its own. If Harry hurt himself—if he broke his leg or stubbed his toe—his body repaired itself by growing bone in the place where he had been hurt. It took a few days or weeks for the bone to appear. The only way his body knew how to heal was to harden, so afraid it seemed of leaving any part of him vulnerable.

There are four further photographs of Harry, all of them medical photographs taken in front of a blank wall, and in all of them Harry is in his underwear so that the form of his body can be clearly documented. At nine years old he is still smiling, and he seems braced in position by choice; his slightly crooked stance makes him look mischievous, like any nine-year-old. This is the last photograph in which he is able to raise his head to look directly at the camera. At eleven, thirteen, and twenty he is curved. Something seems to ripple in bigger and bigger waves under his skin. His eyes are lowered to his hands, as if he is concentrating on getting himself out of handcuffs.

As stark as these photographs are, they also show grace. Harry looks poised, as if about to raise his arms above his head and pirouette. His head and torso curve to the left, a delicate bow. Even as he is wracked and pushed about by his new skeleton, he flows.

Whenever Harry’s physicians cut the new skeleton away, it would grow back forcefully over the next few months, as if in a panic. Soon it bound him tightly. Bone covered his back like a cracking cocoon. It welded his upper arms to his breastbone so that his arms hovered magician-like in front of his body. Bone wrapped itself in layers around his skull. Delicate columns of bone, like stalactites, fused his head to his neck, forcing him to stare at the ground. One of his legs was bent back, as if he were forever about to kick a ball, as if all the world were waiting in a grandstand around him. He could still move about by shuffling along with a cane. But when he was twenty, when his mother could no longer care for him, he went to live at a nursing home in Philadelphia called the Philadelphia Home for Incurables.

In his thirties, ossification reached Harry’s lower jaw, which became locked to his skull, leaving him unable to speak. He couldn’t brush his teeth, cough, stick out his tongue, lick an envelope or his own lips, whistle, or eat. He lay in bed at the home, a diagram of himself, as if his second skeleton wanted to fuse him to a single spot and keep him safe there. He should never move haphazardly through the world like others did.

It was six days before his fortieth birthday that Harry died. His physicians took his body, as Harry himself had wished: bequeathing it to science would give meaning and depth to ­medical and scientific research on FOP for decades. Following on from the few photographs of Harry as a boy and a young man, there are many, many photographs—from all angles and ­proximities—depicting only his skeleton.

He stands today in the Mütter Museum of the College of Physicians in Philadelphia, the city in which he was born. He’s not far from the plaster death cast of Chang and Eng, the conjoined twin brothers who died in 1874, aged sixty-two. In life, a seven-inch-long ligament joined them at the chest. The liver they shared is displayed beside them in a glass jar, preserved in formalin.

Harry is alone inside a glass case. He stands on one leg, as he stood in life, his other leg bent behind him. He was easy to put together. Ordinary human skeletons require fine wires and glue for articulation—the gentle drawing upward of the bones, so that they hold together and stand tall. Without the wires and glue, they tumble into a pile. Harry’s skeleton stood tall without help, because the plates, sheets, ribbons, and thorns of his second skeleton fused him almost completely into one piece. You wouldn’t know Harry’s face or his handwriting or the sound of his voice, but even though he is faceless and silent, left alone he is self-supporting and strong. We can look on the contained explosion of his skeleton, the way it seems forever breaking but never broken. Physicians, scientists, and students return and return to it; they say he is their Sphinx. Harry’s sister Helene comes each year to see him too, and to pay her respects.

witches

Each of us begins in the nude, it’s true. In most of those early photographs we are naked—wandering around the neighbor’s backyard with a bucket, sitting in a river looking up, waving through an open window. It seems expected of us to be in the nude. Our legs are bandy and soft. Our arms are rolls of fat. Our face doesn’t yet belong to us; all we really own are our eyes. We are greedy with them—we look and look, gobbling up our parents and brothers and pets with our eyes, looking at everything but ourselves. The self is a place where things are got—food, touch, sleep—and our conviction is that the world exists to give things to us. We call that world into being each time we open our eyes.

We laugh now about how unself-conscious we were then, how easy it was to be in the nude. There are photographs of us running naked, hands bunched as we tilt forward, amazed. We don’t remember being amazed. We don’t remember arriving in a doorway naked and glaring up at a taller person who must have raised a camera to her face.

At some point in memory, days begin to grow out of fragments. The days sharpen and become facts. Always this point is during summer at the sea, when our hunger rose up cleanly inside our stomach, like a rock out of the water, and we weren’t afraid to swim out to it—we ate and ate. “It’s the sea air,” said our mother, stroking our arms and our brother’s at the same time. Many arms stretched toward her. Our arms were long and thin and covered in soft blond hair like thistledown. Our fingers seemed prehensile. Our arms and hands grew at a much faster rate than the rest of us, as if forever reaching out to be stroked. By the time we were eight years old, our arms hung halfway down our legs.

What became of our friend? We had one special friend who came with us on holidays, she and her older sister. We sat with our friend on the banks of the lagoon beside a mangled tree stump, which was our boat or our horse for riding over crabs at low tide. Naked, we crouched on the beach and scooped the sand out of the lagoon bank. Using our shoulders and forearms, we dug handful after handful and smoothed it over our arms and legs, over our faces and into our hair, slowly charring ourselves black, a game we called Witches. We ladled a large silken scoop onto our heart and watched it drift down our chest and belly and between our legs. Postcard-neat: legs splayed in front of us, charred peninsulas.

The beach is uncompromised by memory. The streams that ran into our lagoon had pretty scalloped edges. The farther inland the streams ran, the slower the water moved and the darker the sand became, until it had the greenish tinge of frog skin. It was a rough beach, with dinosaur bones of wood lying all around the river mouth, where the water moved too fast to cross, and mohawks of flax growing all over the hills. The beach belonged to us in a way that no place has belonged to us since, in a way no city or town can belong to us. We have decided never to go back to this beach because it will have changed beyond the memory, and this will be distressing, or it will be empty and this will be worse. The lagoon gone, signposts now only posts, cabins lifted away to reveal crabgrass threadbare in the sand. The sea replaced with a thinning tarpaulin held down by rocks.

We remember our friend’s skin: salamander skin. All over she was smooth and hairless, with a white belly, dimply bottom, and feet that banged the ground. When she ran indoors the furniture rattled, and her mother would look up from her book and cigarette, murmuring gently about the need to slow down, sit still, please . . . Our friend would assume a terrible silence, then the storm would come. Shut up, get lost, you’re all bastards and bitches. Sometimes she would hit both her parents and they would grip her arms and hold on tight as if keeping her from blowing away. We watched these exchanges with fear and admiration. What would happen if we behaved like this? We felt excited in advance. We looked forward to turning into a teenager, when we would be entitled to shout and slam doors and be hated by our parents.

Our friend was covered in faint gold freckles, as if she’d grown on a tree. Her hair was a thin orange. Ours was mousy, and in winter it was coarse and dark. Our mother called it golden, but in our heart we knew. On the beach it didn’t matter. In our witch costume we looked the same as our friend, with our black sand hair and black-rimmed fingernails. We reclined with our friend on the sand: two stinking seals, barking with laughter.

We know of no other time in our life when our body felt this inconsequential. Our arms and legs were light because our bones were hollow. Our body knew two states best, moving fast and lying still; it had no use for anything else. We could have lain right in the middle of the beach, camouflaged in the sand, and no one would have glanced at us. Only our blinking eyes might have given us away, but they could have passed for shells, especially our friend’s, which were the shining gray-blue of paua. Ours, of course, were the color of snails.

We can’t pinpoint a moment when we learned that the nakedness could not go on, the moment when we looked down at our body and saw what it was. We tell ourselves now that it must have been a gradual change. It must have been a creeping awareness of temperature and shadow and weight, in the same way that the cold comes on when the sun drops behind the sea: a soft gray net comes down. We must have begun to look at our body, to find it from the corners of our eyes to see if it moved differently under our watch. It did. Our body walked too quickly, as though a tailwind were pressing it forward, and then sometimes very early in the morning it turned into the clay beneath sand and paralyzed us, and a second body sat on our chest. At night our body walked around, taking us outside to the woodpile or to the foot of our parents’ bed, where we woke to find ourselves deep in conversation. Our body tried to fold up at the first sign of danger, as if disappearing into a shell, not realizing that the shell, too, was our body, that it was a thing both apart from and forever clinging to our backs.

There must have been a last time, even if we didn’t know it then. We must have stood up on the beach, covered in sand, and felt suddenly heavy, as if wearing many layers of petticoats. Immediately the sand began to slide down our skin, and we’d have known that soon it would become lace. Our friend was laughing. The measure of a person was how funny they were, and our reaction was always to laugh too, helplessly. The black sand made the openings of her face seem new: her mouth as pink as a conch, her eyes lashless; she was as if smoothed by many years of wind and rain and sand. Perhaps it was then that we became afraid she was looking at us, our body showing too much through the sand. So we started running.

We must have felt our sand costume lifting and falling around us, pattering behind our feet, our witch skirts clinging to our legs. Rings of sand flew off our fingers. By the time we finally tipped into the water, our costume was almost gone, but then it must have lifted away completely. We felt it lift and become a cloud in the water. Our eyes opened. As soon as we came to the surface, we would be faced with the question of how to get back to the cabins and tents without being seen. We stayed under the water for as long as possible, holding our breath tight like a fist, fighting our buoyancy.

the te kūiti underground

It seems to me that the realest reality lives somewhere beyond the edge of human vision.

—Russell Hoban

Halfway up View Road, I turned to look back the way I had come. View Road was a gravel road, a dead end. Below me was a crosshatching of fields and roads and the sewage pond, and you could see the airport in my hometown, Te Kūiti. The airport wasn’t really an airport at all but a strip of mown grass with poplar trees at each end and a tumbledown house, the clubhouse, where the pilots, including my father, gathered. It was really just another field, the planes like large ­animals.