to me. He was telling me about all of the people who had said hello, saying, “Heather and Heidi [my twin cousins], Grandma, Aunt Linda, Uncle Jerry, Doris . . .” I understood him until he got to my cousin Doris, and then I asked, “Who?” He thought that I didn’t remember who Doris was, but that wasn’t it at all—I didn’t recognize the shapes his mouth was forming. At that moment, I experienced a strange sensation of silence and knew that something wasn’t right. It’s my most vivid memory from that time because it was when I first realized that I could not hear. Finally, when I understood “Doris,” we moved on.
From that moment on, lipreading became my way of “listening” to people. The adjustment happened so quickly, seamlessly, and matter-of-factly that I don’t even remember missing hearing people’s voices—or at least, I didn’t allow myself to. I don’t think that I was lipreading right off the bat, yet I don’t remember struggling with the sudden loss of communication. The inclination to lip-read just took over. Knowing what I do now, I believe that I was in a readied state. It was as if I had been given the talent to lip-read.
Nevertheless, at the time, it was all so confusing. I had been so sick, and this new silence was so strange that I didn’t understand what had happened to me. Looking back, I think that my strong need to survive, to get back to the life I knew as fast as I could, had already kicked in with full force, and I didn’t even fully grasp that I could no longer hear.
My parents, however, were beginning to grasp it. Once or twice, my father talked to me with his back facing toward me, and, of course, I didn’t answer, which keyed him right into what the doctors had said. Then there was the day when he and my mother had arrived at my hospital room around noon, and we spent the afternoon sitting around talking (I got as much of the conversation as I could), watching TV, playing cards, and reading magazines. I also napped for a while and was quickly regaining my strength. Late in the afternoon, one of the window shades in the room suddenly flipped up, making a loud noise—pfpfpf-pfpfpf-pfpfpf. I didn’t stir. My mother, already hypervigilant to my impending symptoms, really became concerned.
An hour later, when the pediatrician came to check on me, she told him how I hadn’t reacted to the loud noise. He put his watch to my ear and asked me what I heard. “Tick tock,” I told him.
“She can hear,” he said.
I don’t remember if I actually heard the sound of the watch, or if I just thought I did—if my brain “heard” the sound because it knew that’s what it was supposed to do. It’s a phenomenon called phantasmal hearing, and it happened again.
I remained at the hospital for another week and then went home. In spite of everything, I wasn’t scared or upset in the hospital or when I came home—just confused because of all the enormous changes.
For example, I quickly learned to rely on vibrations. Whenever my mother was cooking in the kitchen and needed me, she stomped her foot on the floor. I felt it sitting at the kitchen table and looked up, knowing that she wanted to tell me something. Then there were the lights. Whenever I was upstairs in my bedroom and she or my father needed me to come downstairs, they flicked the lights on and off at the bottom of the stairs. I saw the lights flickering in the downstairs hallway and knew to come down. We all quickly adjusted that way.
In spite of all the changes, I don’t think there ever was a particular moment in time when it hit me, “Oh my God, I’m deaf,” and I never talked about it with my parents—or anyone, for that matter—which seems a bit odd to me now. My mother told me, though, that about a month after I had come home from the hospital, she found me sitting on my bedroom floor with my records and record player just watching a record spinning around and around and around. Such stories make me think that if there wasn’t an exact moment in time when I realized I was deaf, it was because I didn’t want there to be.
When I finally did come to the realization that I was deaf—that I couldn’t hear anything—I was mad at my mother, at first, for never having told me that there was such a thing as deafness. What a shock. Not that I was deaf, but that there actually were people who couldn’t hear. I had heard of blind people or of people in wheelchairs, but not deaf people.
Still, after being home from the hospital for just a few days, I was ready for the entire ordeal to be over. I wanted to play with my toys and my friends. I was a child, resilient, living in the moment. I could communicate, read, and write. I wanted go to the pool. I wanted to have fun. My mother thinks that I pretended half the time because I didn’t want her to be upset. But I swear that was not how I experienced it.
During the first few months, she took me to doctors and audiologists in Chicago, thinking that someone would tell her that my hearing would come back and that I’d be okay. But no one did. I remember her dragging me to all those doctor appointments, but I thought that I was just going to get my “ears checked” and was bored to tears. I wanted to be playing outside with my friends instead of sitting there with microphones on my head waiting to raise my hand when I heard something—which I never did. The sounds would get so loud that I felt the vibrations on the earphones or my eardrums would pop. Then I would raise my hand, but I wasn’t actually hearing sounds, just feeling vibrations.
They gave me hearing aids, which never helped. Yet I wore them all through elementary school. In the hearing-impaired classroom, the teacher used a microphone to amplify the sound of her voice. Everyone thought that the hearing aids might help me to hear something. My mother also wanted me to wear them because it let the hearing kids know that I was deaf.
At first, I wore a body hearing aid, which was supposed to be more powerful than the over-the-ear kind. The little doohickey sat in a small, white cotton pouch that was strapped to the middle of my chest. Straps went under my arms and over my shoulders, connecting in the back like a bathing suit. From the front, two wires went up to my ears.
I wore the pouch over my clothing because it always needed adjusting. I remember eating chicken soup a lot and the soup dripping onto the hearing aids and soiling the straps. Later, I wore the pouch under my clothes. I wore it for three years and then switched to an over-the-ear hearing aid, which I lost at O’Hare Airport when someone walked off with my little pocketbook.
Eventually, my mother mourned my hearing loss and everything that came with it, which I believe was so incredibly healthy. However, at first, she worried about how I’d ever survive in the world as a deaf person. She wanted me to be like I was before. She wanted to be able to talk to me and for me to be able to hear her. Turning inward, she asked God to help her to say and do the right things for me; praying pulled her through. Yet she questioned if she believed enough and had enough faith, hoping that if she prayed hard enough, I would get better.
ME AT SIX YEARS OLD WITH HEARING AIDS
At the same time, she was very angry at God because I had become deaf—that he had allowed it to happen. She couldn’t understand why she had experienced so much support from family and friends—that God had been there for her, but not for me.
As a child, had I known how she had suffered over this, I would have told her straight out that I’d never doubted for even a second that God had been with me. And now, as I sit here writing this book, with Zoe asleep in the next room, I know it even more. Years later, my mother would meet deaf adults who were happy and successful and raising families of their own just like hearing people, and it would help her realize that I was going to be just fine. The professionals had told her right from the start that I had a natural talent for lipreading and that not everyone does. This made her feel hopeful. After about a year, she finally accepted that I was deaf; both she and my father took sign language classes and supported me in more ways than I ever could
