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Massachusetts, March 2004
SOPHIA AND JULIET HAD SEPARATE bedrooms but I put them together at night. They would settle cozily in Juliet’s bright purple room, decorated with Sophia’s white painted hand prints and lit gently with a lamb night-light.
When they fell asleep, I’d trudge upstairs to my bedroom and undress before the mirror. Though months had passed since my surgery, I wasn’t at peace with the thick pink scar that lay across the soft white skin of my breast. A deep vacancy still inside, coarsely sewn over, giving the impression of being healed, of being filled—yet gaping.
Bill and I were like factory workers on different shifts, managing the endless conveyor belt of needs. Feedings. Diaper changes. Story readings. Strolls around the block. Juliet was still waking through the night. Sophia was testy and oppositional during the day. Lucca was getting sicker. Both girls were low weight, and I had morphed myself into a combination short order cook and pastry chef. Amidst it all, we had big decisions still to make for Juliet, and for us. I felt drained, empty.
Bill started playing with Juliet in the early morning, so I could get more sleep. When Juliet cried out, Bill would take her into the playroom to look at books, to play with puzzles, and to dance. Bill twirled Juliet and tickled her. He bundled her up and trudged with her out in the snow. They were the first customers for hot bagels at the bagel shop. He walked her to the river, to the boathouse, to the marshes where the heron came. He jogged her to the farmer’s market, then plopped her at my bedside with a big bouquet of flowers. Bill became Juliet’s “adventure” man; when he entered a room, she looked around for her shoes and coat, and for clues as to where they might be going.
Bill was my “adventure” man, too; I looked at him and wondered where in the roller-coaster ride we were at this or that precise moment. Over time, and with a little more sleep, the twists felt smoother; the heaves less sudden. We hired a babysitter so we could take quiet walks together. We mulled around used bookstores, found our way back to the Indian restaurant we liked on our first visit to Northampton. We inched our way back in, closer.
The Boston ear surgeon gave us the names of the three companies that manufactured cochlear implants: Cochlear, MED-EL, and Advanced Bionics. Late one night, I looked up the Cochlear company on the Internet. Link by link, I found my way to their implant simulation site. Alan Alda was narrating. I was instantly calmed by his familiar voice, and though his hair was grey and he wore a dark suit, he had the relaxed, youthful manner of the army doctor he played all those years on M*A*S*H*. After a few minutes, Alda’s crisp visual image broke up into a fragmented blur of tiny rectangles, with parts fading out of focus, others darkening. I could just barely recognize Alda’s face when the screen froze and I heard Alda’s voice proudly announce that this—this disjointed mess—was the visual analogue of the cochlear implant.
Next, a lady’s voice piped in to give the auditory simulation. “ I like to play tennis,” she said, and I heard it first the “regular” way. Then I heard it simulated, as it sounded to someone with a cochlear implant. The perky, even melodious phrase“I like to play tennis” was mutilated, grotesquely transformed. Had Darth Vader joined Demi Moore and the Wicked Witch of the West to create this raspy, witchy, all-throat sound? I sat stiffly in front of the computer screen. Then I woke Bill. Were we going to drill into Juliet’s tiny skull for this? Could we never expect Juliet to hear the timbre of our voices, or to distinguish between voices, or experience the beauty of music?
For the next several days, Bill and I went to the Clarke School playground at recess and we watched and listened to the children with cochlear implants. There was not a single Darth-Demi-Gulch sound-alike in the bunch. The implanted children heard language and spoke clearly. On the sideline of a soccer game, I chatted with the Clarke teachers about the implant technology. It was not without challenges—it would be hard to hear in noisy places and localizing sound would be difficult—but the implant, if successful, could bring a profoundly deaf child access to spoken language and other sound.
Once again, we faced a decision between manual and oral communication approaches, between Deafness and Hearing, as we had with Sophia three years ago. But whereas Sophia’s hearing loss was “severe,” Juliet’s was “profound.” To be “oral,” Juliet would have to undergo the cochlear implant surgery, and then, with extensive training, her “ hearing” would proceed electronically. Still, there were many considerations that we faced in Sophia’s case that were the same in Juliet’s: only .02 percent of people in the US are fluent in American Sign Language, compared to the 99.98 percent of people who use spoken language. If we could place Juliet in the hearing world, we would be giving her the chance to communicate with the larger, hearing population. And not only with the larger population, but with Sophia, who was acquiring some Sign, but it was clear that she learned—and flourished—as a hearing, speaking, “oral” child. And with us: we wanted our relationship, our intimacy, with Juliet.
There were arguments against cochlear implants, but to me their force was more applicable to the “deaf of deaf ”—deaf children born of deaf parents. The thought that deaf children “ belonged in” and would flourish more in the Deaf community made a great deal of sense to me if the child’s extended family was deaf and part of that community. It made less sense if a child’s parents and family were outside the Deaf community. I understood that in the past, deaf children often found solace from isolation by leaving behind their hearing families and joining a separate, Deaf community. But I felt it was imperative for our family to find a way to share in the same community, one way or another. We also came across the “autonomy” argument—that parents should not impose a decision on a child, but rather should wait until the child can make it. But oral language development required early stimulation of the neural pathways to the brain. To wait for years for a child’s autonomous decision to get an implant would be to drastically minimize its chances of success. And the argument that cochlear implants might relegate a child to a “no man’s land”—if the implant was not entirely successful or if the child’s speech was less than fully intelligible, he might find himself in neither the hearing world nor the Deaf world—didn’t bear out in the current statistics of young and otherwise healthy implant recipients.
One day, in the hall of the Clarke School, I met a mother of two implanted deaf boys. I was surprised to hear her say: “When my younger son failed the hearing test, I just prayed that he was deaf enough for the cochlear implant.” She went on to talk about the difficulty of being too deaf for effectual hearing aids but not deaf enough for implants. She enumerated the troubles her boys had encountered with hearing aids—amplified background noise and feedback, troubles we knew all too well from Sophia—and she extolled the implants as having fewer “interferences” than hearing aids. The mother was thrilled by her sons’ successes. As I stood there talking, with Juliet perched in my arms, I could see that Juliet’s eyes were tracking the movements of our lips, working to decipher our conversation. Juliet could be restrung! Correcting for the broken, bent, or missing cilia in her ear, a run of wire could be wound along the curls of her cochlea, with twenty-four channels working to transmit auditory information to her brain. She could hear language. And she could speak. Something Pearl couldn’t have dreamed of for her girls.
We decided to proceed with the surgery, and we scheduled it for the day Juliet became eligible for it: the day she would turn one year old.
Our Deaf teacher, Cynthia, continued to come to our house every Saturday morning. Before she arrived, Sophia, Juliet, and I made small but special preparations for her visit: homemade cookies, or fruit salad, or hand-drawn cards.
One Saturday, after a Sign lesson, I told Cynthia that we had scheduled Juliet for cochlear implant surgery. I told her that we wanted to continue to Sign, too. Cynthia froze her face. Actually, she froze half of it. Somehow, she immobilized the left half of her face, while the right half took on distorted, changing forms of expression. Her right
eyebrow arched, her right cheek dimpled, her right lip curled down, all while the left half of her face remained expressionless and flat. I knew she was illustrating the paralysis that the implant surgery could cause. The surgery is done in the vicinity of a facial nerve, and the surgeon had cited facial paralysis as a rare but possible side effect. I felt my own face freeze in response to Cynthia’s illustration, and we said a rushed good-bye.
After that, Cynthia stopped coming. She didn’t answer our emails, our faxes, or our TTY calls. Almost weekly, Sophia would ask, “Where’s Cynthia? What happened to Cynthia?”
We didn’t explain to Sophia that our decision to give Juliet surgical access to sound was an offense to Cynthia. An insult in its suggestion that deafness was something to fix—eradicate, even—no matter its risks. Selfish of us, according to Cynthia, presumptuous to “change” our baby, to embark on a surgery, when she was healthy and well. We told Sophia that Cynthia had a scheduling conflict. Sophia was three years old, and we wanted to buffer her for as long as possible from the fractures and judgments that everywhere marked the Hearing/Deaf divide.
Cynthia’s reaction was, I could only imagine, rooted in the deep pain caused by a long history of wrongful treatment marked by discrimination, marginalization, and invalidation. What beauty in language, and what sophistication in culture the Deaf had wrought from this pain, what pride they could claim, was now threatened, even from the inside. Despite the gain of new rights, the Deaf community was losing membership. With cochlear implants, deaf people were learning to listen and speak. Children like ours were gaining a world—a hearing world—as the world of the signing Deaf, with its rich and vibrant culture, was shrinking.
I tried for months to reach Cynthia, but I never heard from her again.
In time, we found another teacher, someone who lived Deaf, without hearing or speaking but who, without question, honored our decision to do what we considered best for our children. Her name was Kathie. Her eyes and hair were the matching color of nutmeg, and she wore country dresses with small print flowers and colored bows. She had two sons of her own, both deaf, and she radiated motherly nurturance. Sophia and Juliet warmed to her instantly.
Often, when Kathie arrived, she’d pick up one of the girls’ favorite books—Goldilocks and the Three Bears or Lily’s Big Day or Bread and Jam for Frances—and sign it out for Sophia and Juliet with grand expression and drama. The girls sat snuggled in her lap, mesmerized.
Kathie walked through the playroom, showing us the sign-names for the girls’ puzzles and board games and stuffed animals. In the kitchen, she taught us the signs for their favorite foods: nectarines, sugar cookies, spaghetti, ice cream. In the bathroom: their bath toys, their toothbrushes, their “silly strawberry” toothpaste. Sophia and Juliet acquired a small, practical vocabulary. Bill learned enough to communicate with the girls at bath and bed time. I continued on, vowing to keep Sign an option for the girls as they grew older, hoping they would have the chance to forge ties and friendships within the Deaf community over their lifetimes.
In my list of notes for Juliet’s surgeon—we were on a countdown now, with Juliet’s surgery just six weeks away—I added a question about how, precisely, Juliet’s facial nerves would be monitored throughout the operation.
Massachusetts, August 2004
A WEEK BEFORE JULIET’S SURGERY, we went to Vermont. Best to keep our minds off the impending operation. We’d kayak, eat the local bread pudding, swim in a lake, and ride horses. I’d read in a lounge chair while the girls glopped up the deck with the rubbery but allegedly non-toxic blue, pink, yellow, and green nail polish they’d gotten in a birthday party goody bag. I was excited to dig into my new copy of the Best American Essays.
As the smell of last night’s burnt marshmallows wafted by, and the lake gently lapped atop the rocks below, I opened up the crisp volume to the table of contents. Atul Gawande’s name caught my attention. Wasn’t he a doctor? I had heard him speak on NPR once. Before I could stop myself, I was engrossed in Gawande’s essay: “The Learning Curve,” all about how medical residents learn by practicing on patients, inevitably making mistakes along the way. Gawande described his own learning curve, a series of failures on his way to successes, while illuminating ethical tensions between providing patients with the best possible care and training doctors for the future. As I read, I slumped down in the deck chair and my left shoulder blade became painfully lodged between two narrow wood slats. I glanced over at Juliet, her tiny fingers and toes entirely covered in a sticky rainbow of glop. What was the point in even trying to relax?
I reached for my cell phone and checked for service. One tiny bar appeared. I dialed anyway, punching in the now-familiar number of the cochlear implant coordinator at Childrens’ Hospital. I asked to know who the surgical residents were, the ones who would be assisting our carefully chosen, experienced surgeon.
“They don’t actually assign the residents until the night before,” she said.
“ What?”
“Even the surgeon won’t know until the morning of the surgery.”
I was silent.
“Look, it will probably be one of three. I can give you their names if it will make you feel better.”
“Yes, I want their names.” In my head I was already planning out a trip to the computer center in town, where I would Google them.
The coordinator patiently spelled them out for me. “They are all excellent. They don’t get placed here if they aren’t. Besides, the doctor watches them very carefully.”
“Watches them make their mistakes?” I couldn’t help blurting out. “I’m sorry. But I’d feel much better if I knew exactly what part of the surgery the surgeon performs and what part the residents perform. And how many times the residents have performed their parts, and how successfully.”
“You can call the surgeon if you like.”
“And what about the anesthesiologist? Do you know who the anesthesiologist will be? And has that person been informed that Juliet weighs less than most cats?”
I turned to see Bill’s wide, apprehensive eyes staring at me. Like I had finally lost my mind.
In Vermont, Lucca’s pee became a thick stream of blood, her face, a knot of anxiety. She whimpered and cried and walked in frantic circles in anticipation of sitting down. Her quality of life was diminishing before our eyes. The day we got home, we arranged for a babysitter to take the girls out of the house, and called for the vet to come. While we waited, Bill and I sat together on the living room floor, petting Lucca and kissing her. She was our softest-coated, brown eyed girl who centered us, who took us out into the air—morning, noon, and night—basking in sun, bounding in snow, wincing in rain. Before she got sick, she sat patiently, equidistantly, between us as we read or worked in the house. And she slept beside us, her paws bouncing, as she dreamed her dog-dreams in our midst. The night she got sprayed by a skunk, years before we had kids, Bill and I slept in sleeping bags with her in the garage. She kept us up into the wee hours, her tail thumping against our blue nylon bags, wagging out her excitement at this novel bedtime arrangement.
We hugged Lucca as the vet put the needle into her leg, but she jerked her leg away, and jerked it away again and again. Until the vet stood up and said that he would bring tranquilizer drugs for us to give her overnight and return tomorrow.
How to get through this stolen day, this night, but tend to Lucca, to Sophia, and to Juliet—all in constant neediness? The next morning, Bill urged me to leave the house with the girls before the vet’s second arrival. Lucca was already tranquilized, but upon seeing me walk toward the stair, she lifted herself up to follow, then fell down, legs splayed. I gave Lucca final kisses and I left swallowing my tears, with Sophia and Juliet in tow. Driving in the car, a moment came when the cloudless blue sky broke open in my mind, and I knew that Lucca was gone. She left without my hand on her thick furry side, without my breath in her ear. The loss, all my own.
Massachusetts, September 2004
IN THE CHILL OF EARLY MORNING, Juliet’s first birthday, Bill and I settled Sophia, still in her pajamas, into my parents’ hotel room down the hall from ours. Then we bundled Juliet in her fleece coat and crossed the busy Boston street to Children’s Hospital. I clutched Juliet tightly as we walked, shielding her from the wind as I could not shield her from the risks of the operation she was about to undergo. In the pre-op room at 6 a.m., she was one of at least fifteen babies facing surgery.
Awake most of the previous night, watching Juliet sleep, all I could think was: she is intact. The sounds reverberating in my ears—the rumble of the ice machine, the shuffling of feet down the hall, the hum of the heater—why were they so important? Juliet understood the world as well as any one year old, and she was happy, bonded to us, related. How crazy were we to have a surgeon invade her head, drill into her tiny skull, weave an electrode array around the curls of her cochlea—all to bring her into the hearing world?
Diminished by my uncertainties, it was all I could do to follow the directions of the nurses. I put on scrubs so that I could carry Juliet into the operating room and hold her as they administered the anesthesia. As I put the blue mask over my mouth in preparation, Juliet, her playful eyes sparkling, yanked the mask off in a peek-a-boo game.
In the operating room, I held Juliet tight, warm against me, as the doctors briskly shoved a black rubber mask against her face. Her muffled gasps were swallowed up, her fight dissolving as she went limp in my arms. Quickly, the doctors took her and ushered me out of the room. Bill was waiting for me as I weaved my way, flushed and dazed, to the end of the hallway.