CHAPTER 3
Carole’s Story: Attack of the Fifty-Foot Woman
I had never left Children’s Hospital. Not for a single day. It was spring of 1960, and I was almost two years old, yet I had never seen my parents’ home, never even met my new baby brother. Doug lived as an only child, as did I.*
My world was a series of white rooms full of hard machinery. The city outside my window was a mystery I could not begin to grasp. When my mother and father walked out the door, it was if they ceased to exist, until the next morning when Mom’s footsteps would ring out in the hall. A repetition of tiny desertions that made me an anxious child.
This, I think, is why I still remember many of Mom’s stories of my earliest childhood. Her stories told me that no matter how many times she left, she would always return. I was shaped by these stories into a girl who was both exceptional (in her eyes) and always at risk (in her eyes).
Also, a girl who was endlessly in peril. As far back as I can remember, she told me about the times that I’d come close to dying from fevers or from dangerous operations.
The closure surgery on the day I was born had been only the first of dozens. Sometimes my surgeons didn’t even bother stitching me up between operations but simply tied me together like a Shabbos brisket. I must have been far past infancy, but I remember a surgeon pulling gauze packing from an open wound in my abdomen. Mom sat on the other side of the room, white-faced and white-knuckled, as I screamed that I was being killed.
The dramatic thread that wound through her stories was that she nearly lost me—not only to death, but to life in an institution. For the first two years of my life, the hospital sent social workers to my room, arguing that family homes were insufficient—even dangerous—for children with constant medical needs. It seems as if almost every parent of a disabled child was told the same thing: send them away for their own good, and for the good of the family. I hung on Mom’s thrilling tales of resistance. She rescued me through sheer pluck and derring-do.
The moment of truth came that spring, when my health had improved enough that she thought it was safe to bring me home. She knew she’d have to be clever if she was going to bring the hospital around to her way of thinking.
Carole Sue Horwitz Lehrer, just after her marriage
* Kids were not allowed to visit the hospital, due to their being little petri dishes of measles, mumps, and other microscopic villains.
CHAPTER 4
Carole’s Story: The Girl with All the Gifts
The men usually showed up at the pinkish crack of dawn, a jostling, white-jacketed herd of specialists who filed in and peered down at me, a small bandaged bundle in the crib. Urologist, gastroenterologist, orthopedist, neurologist, neurosurgeon. They observed, they prodded, they discussed, and moved on.
But on this chilly morning, the men of Grand Rounds were about to get a surprise.
My mother had chosen our costumes with care. She wore the navy suit from when she’d been a researcher at Children’s, in the hopes that my doctors would remember the Carole Horwitz who’d moved in Dr. Warkany’s orbit. Her ensemble was finished off with a bit of crimson lipstick and a marcasite mezuzah on a chain, appropriate for her double role: that of a fellow specialist and a sweet young mother.
My own frilly dress was the farthest thing from a hospital gown. It was laden with lace and embroidery that cascaded over my bandages and distracted from the incised scribbles of red and pink all over my body—even under my hair, where doctors had nicked my scalp with a scalpel and sewed IV needles inside the veins. My doctors knew the scars, of course—they’d put them there themselves—but Mom wanted them to see me anew. This was the crucial illusion: I had to appear as a Normal Girl. A girl who could survive going outside.
I wasn’t in my usual position, supine and ready for inspection. Instead, my mother raised me high on her shoulder and danced us into the center of the ring of balding, bespectacled, middle-aged heads. Easter Island, as carved in Eastern Europe.
Dr. Perlman reached for me, intending to lay me on the examination table. Mom stopped him with a guileless smile. “Just a moment, Doctor, if you please. Riva’s been giving me an earful all morning. She has something to say to you, gentlemen.”
It was time to hit my lines. “Please give me Thorazine instead of Compazine. Compazine makes me throw up.” (Spoken with a lisp: pweeze, Thoratheen, fwow.)
This was especially startling because I was small for my age and appeared far younger than two years old. My pediatricians cooed and chuckled. “My goodness, Carole, isn’t she something? We should get her a job in the pharmacy!”
Mom whispered, “Keep going,” so I complained about all the drugs that made me barf or break out in hives, then tried my own trick of making her earring disappear by sticking it in my mouth. Mom pried my fingers off her earlobe and fished out the pearl clip before I could swallow it like a pill and grinned behind my diapered bottom.
Dr. Suder’s eyebrows did a Groucho waggle above his wire rims. “Very impressive, Carole. How’d you pull this one off?”
Mom batted her lashes. “Why, sir, I can’t imagine what you could possibly mean.”
She sure wasn’t going to tell him that for weeks, we’d been practicing a ventriloquist act, in which Mom would settle me on her lap and sound out each syllable of every drug sloshing through my bloodstream. “Say Er-rith-ro-MY-sin.” “Say PRED-ni-zone,” like a cross between Dr. Seuss and the Physician’s Desk Reference: pure aural nonsense rhymes.
Truth was, not all of our performance was a trick. My mother loved dictionaries and crossword puzzles, a love that flowed from her to me, making me part chatterbox, part echo chamber. I had words to take the place of everything I had never experienced. I’d never known wind, rain, sunrise, clouds, birds. Traffic lights and checkout lanes. Moonlight on a front lawn. Dogs on leashes, snowmen, traveling fairs. The Ohio River, the Cincinnati hills. My family’s own front steps. Instead, I swam in a river of grown-up language.
Mom and I had practiced until our audience might believe I understood everything that was coming out of my mouth. In order for her plan to work, Mom needed to convince them that I was more than a surgical triumph; I was to be revealed as a prodigy.
She jounced me on her shoulder.
“Heee-mo-glo-bin,” I said. “Mor-phine.” I curled against her neck, both pawn and prize in our game.
“What do you think of our little genius, Doctor?”
Dr. Perlman winked. “You’re going to have your hands full with that one. I’m betting she’ll be in college by next year.” Maybe they were onto us—but even so, something shifted that day in Grand Rounds. The social workers evaporated and my doctors began to discuss how to care for me at home.