I'll Scream Later (No Series) Page 2

  Don kicked around at odd jobs for the next few years. He had a serious girlfriend that he lost tragically that we would hear about over the years. Near Christmastime, they had argued, leaving things in a mess. That night she went out with another guy. As they were driving back home from their date, another car plowed into them. She was instantly killed. To this day, when Don says her name—and he rarely does unless pushed—he still cries. Another twist of fate; who knows what would have happened had she lived, my brothers and I might not exist.

  My dad and my mom dated off and on, from the time they were fifteen, though as my mom says, “We did a lot of breaking up, too.”

  My dad tells this story of why they finally got married:

  “We’d been engaged quite a few times, and Libby finally said she didn’t want to hear from me again unless I wanted to get married. I knew she was out visiting relatives in California and heard that there was a big earthquake. I called to make sure she was all right and she said, ‘I suppose you want to marry me since you called…’”

  So the Kern County earthquake in July of 1952, a 7.3-level shaker that would twist highways, crumble buildings, and do more than $60 million in damage, triggered what would become my family.

  THE WEDDING ON November 2, 1952, was at noon on a Saturday at the Belmont Hotel in Chicago. Around a hundred guests were invited. On their wedding day, my dad was in a dark suit, and my mom wore a powder blue dress that she bought at a department store for $17. The veil she borrowed. With a rabbi officiating, they said their vows, Don crushed a wineglass, and they both dared to dream a little.

  The couple settled into a nice, bright apartment on Chicago’s north side, furnished with $5,000 that Don’s bosses had given him as a wedding present—a fortune at that time. My mom was soon pregnant with my brother Eric, and four years later my brother Marc was born. Not long after, the family moved to Morton Grove, to the house I would grow up in.

  My dad, by then, was selling used cars, a business he would stay in for the rest of his working days. It was hard work, long hours, but the money was enough to afford us a comfortably solid middle-class life. My parents developed an active social life—Wednesdays and Saturdays they always went out. Thursdays my dad played cards with the guys…all night.

  Over the next few years, my parents would try without success to add to the family. My mother had one miscarriage, and more devastatingly they lost a baby, a boy, who was premature, born the day President John F. Kennedy was assassinated.

  By the time my mom was pregnant with me, Libby and Don were hoping for a girl, but like most parents, what they really wanted was a healthy child. Eric had just turned twelve and Marc was eight when I came home in August 1965.

  My grandmother Rose is indirectly responsible for my name. She wanted Libby to name me after Molly, her half sister, the aunt who had helped bring Rose and her two oldest children here from Poland. Although my mother really despised this aunt, she agreed—sort of. Sometime before I was born, she attended a luncheon where the speaker was a British woman named Marlee. The woman was attractive, self-possessed, and impressive and was kind to Libby when they met that day. My mother came home and told my dad that if the baby was a girl, Marlee would be her name…close enough to Molly to satisfy my grandmother’s request.

  For a time there was a nurse—I guess that was 1965’s version of a nanny—to help take care of me, although in my brother Eric’s memory her main function seemed to be to keep him and Marc away from me. But she soon left and my care and feeding reverted to the family.

  To Eric I was just the baby in the background. He was busy becoming a distant teenager, out with friends as often as he was allowed, which was a lot. Marc, though, remembers he was fascinated by the new addition to the household and hung around to help out:

  “I remember being intrigued with Marlee’s tongue. In those first few weeks when she’d cry, it would curl up on both sides, just a perfect little bow. I learned how to hold her, how to check the temperature of the milk on my wrist, and how to feed her. I remember Marlee always wanted to know who was in the room; even before she could sit up, she’d be lying in her crib but always looking around. I used to think she had radar in her head.

  “Oh, and I remember she had regular diapers, I guess it was before disposables. My mother would put them in the toilet to soak and I used to go in there and pee on them.”

  Just what brothers are for…

  Life went on and I grew into a babbling toddler—“What’s that, Marlee?” “Apple.” “And that?” “Dog.”

  “She wasn’t putting sentences together, but she had very clear speech,” Marc remembers.

  Everything seemed fine. Except it wasn’t.

  Wearing my hearing aids, age 5

  3

  THEN THERE WAS SILENCE.

  Many theories have floated through my life about why or how or exactly when I lost my hearing. The one that I remember hearing as a child and that has followed me around the most is this: When I was around eighteen months old, I had roseola, a viral infection common in infants and toddlers. It comes with a rash and a high fever and usually disappears without complications in a week. I would later find out that roseola doesn’t cause deafness.

  As the story goes, the family was due to fly to California where my grandmother and most of my aunts and uncles now lived. My fever had been particularly high but it seemed to have run its course; nevertheless my mom took me to the pediatrician to make sure I was well enough to travel. He said yes. And so we did.

  My brother Marc remembers the plane ride as Wizard of Oz scary, rough, with a dark storm he could see outside the windows of the plane. Marc says, “We were waiting for my uncle and aunt to pick us up at the airport, and what my memory tells me is that I said to Marlee, ‘What’s that?’ And she answered, ‘Tree,’ which it was. Now, looking back, I never heard her speak again, never as a hearing person.”

  In California everything just stopped. Hands clapped, I didn’t hear them. Pots fell, I didn’t flinch. People called my name, I didn’t look up. My family left me with my grandmother Rose’s neighbor so they could go to dinner. When they came home, she told my parents she was sure that I was Deaf. My mom at first chalked it up to the stubbornness of a kid heading into the terrible twos. But the neighbor insisted it was something more.

  I don’t have memories of before, of a world where I could hear, I was too young. So I can only imagine what it must have felt like to know that something fundamental has suddenly shifted and you don’t know why. The most basic connection we make as human beings is communication, and mine was suddenly irrevocably changed. Over time, I would learn how to bridge this gap, but I still wonder about that eighteen-month-old toddler just learning about life and what it felt like when everything went silent.

  The first doctor my parents took me to when we got back to Chicago thought maybe I just had water in my ears and suggested they give it a few days. But there were no improvements. Another doctor identified the problem and handed down the verdict that would change life for me and my family forever: I was profoundly Deaf.

  My dad says, “I remember leaving the doctor’s office after they told us, just feeling stunned. I couldn’t really accept it. I didn’t want to believe it. My little girl, Deaf? When we got home, Marlee had fallen asleep, so I put her in her crib. Then I went down to the kitchen and got some pans and stood over the crib, banging them together. She didn’t wake up, just kept sleeping, and I stood there, banging the pans, and crying. I still cry when I think about it, one day she could hear, the next day she couldn’t. It just disappeared.”

  Even to this day, when I’m long past wondering what happened, it still chokes my dad up so much he can barely talk about it.

  ANGER AND GUILT moved into my family’s house along with my diagnosis—something as a child I never felt swirling around me.

  My parents wondered if they had done something to cause my deafness, if they had missed some sign along the way. If they’d discovered a problem ea
rlier, while I could still hear, could something have been done? Had the changes in the pressure in the airplane cabin that day as we flew through the storm been too much? Even when they were told no by just about every professional around, it was always there, unsaid, in the background.

  Guilt settled in over the years, too, over not learning sign language. My mother did a little, but for me it was soon like talking to someone who knows just a little bit of English—barely enough to get by, and far from enough to have a real conversation. There was guilt that my family could hear and I couldn’t—the conversations around the dinner table, the radio in the car, the television sets that were on almost constantly in the house.

  And there was anger—at the situation, that it had happened to their baby girl, their little sister, that no one could tell them how to fix things. All their plans and hopes and dreams, everything they thought about what this last child would mean in their lives, in the family, changed.

  “I was angry at her being Deaf, that nature played such an awful trick,” says Marc. “And I know she wouldn’t have wanted it, but I felt guilty that I could hear and she couldn’t.”

  Dealing with my deafness would overtake everything else. For my mother, it would become her obsession. My brother Eric remembers a sea change in the Matlin household; he defines the two stages as the “original family” and then the “Marlee family.” Eric says, “My mother’s reason to live changed. She poured everything into Marlee. I was older and I didn’t need their attention at that point. Marc, I’m not as sure.” And I’m not so sure Eric wasn’t in some ways hurt that as the oldest, and heading into his teenage years, his needs just fell by the wayside. That’s just not right.

  Marc remembers that many of the household rules were not just relaxed, but tossed out the window. All of which benefited my brothers as well as me. We’d rarely had treats in the house, but now a cabinet in the kitchen was filled with anything sweet that I liked. Ice cream was always in the freezer. Toys began to fill the house, whereas in the past the boys had made their own entertainment, usually pickup hockey or baseball with other kids in the neighborhood.

  From that point on, just about anything I wanted was given to me, as if the toys, ice cream, candy, and an almost complete lack of rules could somehow make up for my being unable to hear. I was definitely spoiled—the baby of the family, the only girl, and Deaf.

  Looking back on my childhood, I honestly don’t remember ever not getting something that I asked for. By the time I could drive, the toys became cars, with new ones all the time for me from my dad’s used-car business. Despite my being a pretty willful teenager, I was only grounded once, and even that was cut from two weeks to one almost immediately.

  The message I got from my parents was that their world, and as far as I knew the world at large, revolved around me.

  Growing up, most of the time I was happy, I loved to play, I loved having fun. I loved performing, making other people laugh. I had a large collection of friends, a mix of both hearing and Deaf. But as anyone who knows me well will tell you, I also had a temper.

  I’ve thought a lot about that anger, trying to understand the source of it. While it’s easy for people to assume I was angry because I was Deaf, that explanation always felt too simplistic. Even when I was completely alone and trying to do a brutal self-examination of my emotions, that never felt like the reason.

  I think some of it was triggered by the ways in which deafness isolated me from a world I wanted to embrace and absorb with a passion. Anyone else in the family could pick up the phone and call my grandmother. I wanted to, but I couldn’t. Everyone else understood the dramas and sitcoms that played out on TV; someone had to fill in the blanks for me. And too often, no one did.

  I had a thousand questions about life, and too many times no one was there who knew how, or would take the time, to explain things to me.

  When my mother would say no, in my memory it was always just no, there was no reason why. I wanted to know why, needed to know, but felt lost and too often was left to figure it out—or not—on my own.

  Here’s how I tried to explain how I felt in an essay I was assigned when I was thirteen. The title: “My Life About Being Deaf…”

  I know that it ruined my life from an early age…. My brothers had fun with me and tried to talk with me but when they both heard that I was Deaf, they were so shocked and couldn’t believe it. And it had depressed them…. What I feel about being Deaf is that it is a hard life for myself.

  As I grew up, I had to find a way of coping. Whether it was my parents, friends, lovers, teachers, the entertainment industry, or for that matter the deafness itself—anyone who said, “No, Marlee,” set powerful emotions churning inside me and I would fight back. Whoever or whatever was trying to hold me back—I would fight against it as if my very life depended on it. And I now believe that it did. That fight, that intensity, that relentless need to break through and connect, has, in many ways, propelled me through this life.

  When I was young, Marc, my aunt Sue, and others saw my temper tantrums as a manifestation of my frustration at not being able to communicate. Temper tantrums are common among Deaf children, and I would imagine among hearing children, too, until barriers to communication are broken through. My mother, though, seemed to view it as my punishing her. My father saw these rows as his own private hell, with him caught between the two people in his life he desperately wanted to be happy.

  An escalating cycle of conflict between my mother and me would reach its height when I hit my teens, which came around the same time as what I now believe were my mother’s increasing bouts of depression. All I knew then is that when my mom closed the door to her room, no one was to bother her, no matter what. I felt closed out, and once again I didn’t understand why. I just knew that the moods were dark and we weren’t supposed to invade.

  One day many years later after I was a mother myself, I was in a grumpy mood and closed the door on Sarah, my oldest child. I suddenly remembered my mom closing her door…. I told myself then to try not to repeat what my mom had done to me as a child. To this day, I try to never close the door to my room at home, and if I do, I always explain why to my kids. I don’t want them to ever feel that I am shutting them out of my life or, worse, that I’m closing the door to escape from them.

  I, too, had a weapon that I would use in fights, my own way of shutting the door—with a turn of my head, communication stopped, all the screaming in the world could not reach me.

  As I entered adulthood, I found that, in a sense, I had to grow up all over again—learning how to set limits for myself, whether it was my need for drugs or for attention—realizing that I couldn’t control everything, that sometimes I just need to let go and trust; and understanding that just as I wanted to kick down all the doors my mother shut on me, when it mattered most, I needed to find a way not to turn my head away from the difficult moments but to look that problem, that emotion, that person in the eye, and work through it. Essentially I had to unlearn a lot of what I’d been taught as a kid.

  It hasn’t always been easy, and sometimes progress is slower than I’d like—but I work on it day by day.

  4

  MY PARENTS’ DECISION to have me grow up at home, go to mainstream schools, live in and cope in a hearing world, was, without question, the most important of my life, and one that I will forever be grateful for.

  At the same time, they wanted to make sure I could navigate the Deaf world as well, so my earliest memories are of moving constantly between the two. Feet firmly planted in both.

  As soon as they began to finally accept that I was Deaf, my parents threw themselves into finding out everything they could about how to help me navigate life.

  The first group of specialists they consulted suggested that I be sent to a school for the Deaf, essentially institutionalized, which was the most common practice at the time. So my parents packed me and Marc into the backseat of the car and drove to St. Louis, which had two highly regarded schools for
Deaf children.

  One of the schools specialized in the oral tradition—no signing, you were instead taught how to speak and read lips. The other was more focused on teaching American Sign Language as the foundation for communication and developing an understanding of Deaf culture. Both boarded students through the week, with weekends spent at home.

  After the visits, my parents sat in the car in the parking lot of the last school we visited and, once again, cried. They couldn’t live with the notion of shipping me off to a boarding school, but they weren’t sure what other options were left to them.

  Ultimately, they decided that they would find a way for me to attend mainstream schools with Deaf-education programs—that usually meant long bus rides, but allowed me to live at home. They found a doctor in the area who specialized in the oral tradition, essentially teaching the Deaf to speak and to rely on lipreading for communication, and I started working with him several times a week by the time I was three. I was fitted with hearing aids to assist any residual hearing that might be there. I had one for each ear, although the doctors had determined that I had absolutely no hearing in one ear and was roughly 80 percent Deaf in the other.

  I didn’t appreciate these efforts at the time. The speech lessons were extremely difficult, especially for a three-year-old—sometimes I screamed going in and coming out of them. I did grow to accept them, the lesson learned was not to reject help—I knew at some point in my life I wanted to be able to speak as well as I possibly could.