Not Fade Away: A Memoir of Senses Lost and Found Read Online Free PDF Page B

was.
    The recorded reveille bugle being played over the camp loudspeaker always interrupted the birds, and I remember how clear and crisp the first scratch of the needle put to the record sounded. I heard it with such ease. Back then I had no idea that in ten years I would not be able to hear the voice of a person standing directly in front of me. I could never have known how treasured this memory would become to me, waking up to the sounds of the earth.

9
    W hen I was thirteen, my mother started noticing that I didn’t answer her when she called for me from downstairs. At first she thought I was going through a teenage phase and didn’t want to acknowledge her, but she soon started to worry. She said that the only time I seemed to respond was when she elevated her pitch to a high soprano singsong. So she went to the pediatrician and persuaded her to have my hearing screened. More tests.
Awesome.
Just what I wanted. She took me to the Children’s Hospital in Oakland, where the top pediatric audiologist in the East Bay reassured her that the likelihood of my having hearing loss was slim. “Thirteen-year-old girls don’t like to listen to their mothers,” she maintained. But she promised to examine me thoroughly, as thoroughly as the eye doctors had, test after test. I could tell, though the doctors tried not to frown, that this was yet another test that I wasn’t going to do well on.
    What I knew: Apparently there was something wrong with my hearing, as well.
    What I didn’t know: When the doctor came out to talk to mymother, all of the color had drained from her face, and she asked if she could run the tests again. When she returned, she gave my mother the good news—she had been worried that I had a brain tumor, but I didn’t. The bad news—I had hearing loss. And though it was mild, right now, it was bilateral and symmetrical, meaning that it was affecting both ears. And, because of my eyes, she was worried that this was related and might be degenerative as well, and suggested that we see a geneticist.
    The following month, my parents’ worst fears were confirmed. I was indeed losing my hearing as well. The doctors couldn’t tell them how quickly, but they knew that it was deteriorating, and that at some point I would be completely deaf. It was the first time, according to my parents, that the word “Usher” was used, even though the gene for Usher III had yet to be found.
    The pain that my parents must have felt overwhelms me to this day. They had already gone through the heartbreak of learning about my eyes, and now, to learn that I was going deaf as well must have devastated them. I am convinced that it was even worse for them than it was for me, and I can only imagine what it must have felt like leaving that office. I hope that they were able to give each other even the smallest amount of comfort, to hug one another, and to promise that, even though we weren’t a family anymore, we would face this as one. That’s how I like to imagine it.
    Here’s the tricky part, where my memory, so sharp in some places, fades. I didn’t know, truly did not know, until six years later, on that freezing winter’s day in Michigan, the full extent of what was happening to me. I am sure that they told me, or told me most of it, but when I heard the word “Usher” at nineteen, it was foreign to me, an entirely new land. I knew that I had adegenerative eye disorder. I had hearing aids. How could I
not
have known?
    I can think of all kinds of reasons, but what I come back to is this: I did not want to know. I was still a child, and I could not fathom it. A teenager, in my experience, can barely see a week into the future. What could years away possibly have meant to me? How could I really notice the incremental trickling away of my sight and hearing? The lengths to which we will go to not hear what we do not want to know areastounding.

10
    M y father and his second wife, Polly, met and married quickly, set up by a