“Mom! It’s from the Philippines!” Vincent, my eleven-year-old, his beautiful face round from steroids, his T-shirt distended by a swelling on his back, held out the receiver. It was near the end of summer, 1997, and we had written to a healer across the ocean. I had mailed her an old picture of Vincent, healthy and freckle-faced in his navy blue Catholic school uniform. I had sent a story, “Protein Builds Second Skeleton,” from Science magazine, about a rare genetic disorder, fibrodysplasia ossificans progressiva, FOP for short, that ossifies muscles with strange swellings.
“Good morning,” said a woman’s voice when I took the phone. My husband, Walt, and our five kids — Brian, Vincent, Lucas, Celine, and baby Isabel — rounded the dinner table, opening white cartons of long, brown noodles and glazed vegetables, framed in the dark reflection of the bay windows.
“Good — evening,” I said.
“Your letter has been providential,” said a woman’s voice with an Asian accent. “A few days before it arrived, I dreamed about your son.”
A spasm of hope — or panic — took my throat, and I had to put a finger to my ear to block out a fight for fortune cookies. “Two nights before I received your letter,” the healer went on, “I saw a soul pass through an orange flame.”
The competition for fortune cookies was getting louder. I needed to change phones. But I couldn’t move.
“The next night,” said the woman with the Asian voice, “I dreamed about a foreign boy — I had never seen his face. And then your picture came and I — ”
Our one-year-old, Isabel, was pitching into a wail, unhappily waxing the highchair tray with her fists in a slick of apple juice. Our oldest, fourteen-year-old Brian, was loudly counting out fortune cookies.
“The boy in my dream was Vincent,” I was able to hear.
This was not just a fly-by-night healer on the line. The woman on the other side of the ocean was a reputable practitioner, recommended by a trusted friend.
The baby’s complaint and the fortune cookie fight were escalating over my husband’s commands. It was time to change phones. But before I could excuse myself, the word hex filtered through.
“There has been,” I heard, sitting in the dark of a different room, a room lined with books in Spanish and several laundry baskets, “in the family of mother or father, a malediction — or sin transmitted.”
Wait a minute.
Hadn’t Christ healed a blind man and exonerated his parents? The healer’s explanation seemed extravagant, ignorant, archaic, and, on the other hand, very sensible. I tried to picture this healer, who, I had been told, was a nun: she would be young, with a scrubbed full face, coarse black hair hidden under blue linen.
The nun went on. Her diction was stilted, oracular. “The malediction, the curse, is from a past generation. An evil suffering will purify.”
Whose family bore the unpaid sin? It had to be my side, no doubt: Great-grandfather Tiburcio, slumped at a card table, gambling away the Zapata vineyards grape by grape. Or my mother’s cousin, the one who fell off Manchita at full gallop and was never right again. What about my husband’s roots? An angry Irishman? A British uncle who lost his manners? The most likely mischief would have to have come from the French branch, but with a name like Le Sage, it seemed impossible. Surely, the curse was in my bloodline, if for no other logic than by reason maternal guilt.
I agreed with the nun about the extraordinary power of prayer, but began to feel a strange distaste for her kind voice. No matter what I asked, she seemed to be answering a different question — across the English language, the satellites, the sea, and the fifteen hours between us.
After setting down the phone, I sat in the dark, in that room full of laundry. I am a Latin, prone to magical realism (the strange is normal, the normal is strange); a mother, prone to guilt; and a literature PhD, prone to suspending disbelief. So the healer’s words haunted me, they haunted me. Fibrodysplasia ossificans progressiva is an unreal condition, so unreal it is difficult to fit it in the imagination. When I first heard F-O-P, the letters, it, made no sense. And I felt the full force of César Vallejo’s lines: “There are blows in life, so hard . . . / Blows as if from something like God’s hate.”
The room full of laundry where I sat in the dark was in our old house, a blue two-story, with a field of wheat and sage behind it. From the front of our home you could see silver eucalyptus lining land that had held a fort in another century. And down the road were groves of walnut trees with their dark-skinned jackets on grafted white wood. And there were vineyards, rolling green, for acres and acres, beyond the wheat field. When we first saw the land around what would be our new neighborhood, before we broke ground to build, I felt like I was back in Mendoza, the agricultural province of my family in Argentina. And my husband felt less far from the olive ranch in Porterville, where he grew up taking care of the trees. There was a great peace in the land. The sheltering eucalyptus seemed to promise it.
It was a false peace.
Through our years in the neighborhood of the blue two-story, I began to wonder what really happened on the land lined by the eucalyptus, the stretch of grass that had held a fort adjacent to us when California was a new state. I wondered if it was the site of something terrible, of a massacre. I wondered if a native shaman set a curse to it. Because our neighborhood was the site of unusual luck: of “blows in life so hard.” One Christmas a young child was killed. Later, a young wife became very ill. One spring a boy fell from a tree and lost consciousness for days. Then a surveillance van kept watch over a family threatened with violence. Neighbors congenial in past lives fought through lawyers. Friends moved away without saying good-bye. And when we broke ground to build our house on the hardpan of that new development, our perfectly normal eight-year-old started limping.
The healer’s words haunted me.
But there is no such thing as “God’s hate.” And while Vincent’s condition, fibrodysplasia ossificans progressiva, is so hard to say it must be cut to three letters, so mythic it seems like a biblical punishment, I know in my bones — six years after the healer’s call — that FOP is no curse. It is, instead, a course, a path to ascent.
That night as I sat in the room full of laundry and books, the hall light found a picture of Vincent holding a starfish, taken the summer before at a beach, during a failed experimental treatment. I like to think he is radiant in that portrait. And looking at the image of the boy and the star, I realized I knew nothing of the Filipina healer’s religious order. A new vision of her came to me: it was not the profile of a young woman in the abbreviated blue of Catholic nuns. Instead, I saw a form almost erased in saffron robes, with crossed legs and dancer’s hands, posed mirror image to the gold statue, shine muted in incense, eyes steeped in solitude.
I think the kind Asian voice that called me that night from the other side of the sea belonged to a Buddhist nun who dialed the wrong number.
Note: FOP Research at the University of Pennsylvania may also advance treatments for arthritis, osteoporosis, bone cancer, and heart valve calcification. To learn more.
The above piece has appeared in different versions in El Andar and Hispanic Link News Service (Los Angeles Times News Syndicate) and is reprinted courtesy of Avalon Publishing from Finding Magic Mountain: Life with Five Glorious Kids and a Rogue Gene Called FOP.