Finding Zoe

by Brandi Rarus

  It takes extra time. First, I have to make sure that the interpreter is voicing for me correctly so that the nurse is getting the correct information, which I do by reading their lips. Then, I have to request that an interpreter is present at the appointment, and if the nurse isn’t familiar with the Americans with Disabilities Act (ADA), I have to educate her that this is my right. It’s like that for deaf people in the mainstream. By now, of course, living that way has become second nature. I don’t even think about it.

  Back then, I started compensating without thinking much about it either. It was funny. When I first became deaf, people started treating me differently, although I still felt like I was just like everyone else. But as time passed, the reverse happened. My family and friends in the neighborhood told me that despite my being deaf, I functioned just fine, that it seemed as though I were hearing, and that I was bright and could make it in the hearing world. They said that I didn’t need to be with deaf people at all. Yet, even though I inherently knew that what they were saying was wrong, that being deaf did make me different, even with all my confidence—I tried so hard to convince myself that what they were saying was true. I really took what they said to heart.

  While I had some deaf friends at school, at home, I usually socialized with the hearing kids in my neighborhood and was the only deaf kid in the whole group. One of my best friends was a girl named Chris D’Alessandro, who lived down the block from me. Even though Chris was a year older than I was and was a grade ahead of me in school, we hung out after school and on the weekends. She quickly learned how to sign and became my advocate and champion. Chris made sure that I was included in all the conversations with our gang, and she called my mother on the phone to coordinate our plans for me. I was more grateful to her than I could say.

  When I entered junior high, even though I was mainstreamed in a public school that had a deaf program, I chose not to participate in the deaf classes most of the time. I took regular classes and had a sign-language interpreter with me throughout the day.

  I thought I was too smart for the deaf classes.

  I didn’t know that deaf kids who are only exposed to sign language and don’t use any speech whatsoever—like the kids in the class next door to me in elementary school—often read below grade level because their English isn’t honed. Mistakenly, I associated reading below grade level as being less intelligent. Most of those kids didn’t speak either, which I also mistook as a sign of being less smart. I sure was wrong.

  In eighth grade, the pull to prove to myself and everyone else that I could “stay hearing” was stronger than ever. I left the deaf program altogether and transferred to my neighborhood junior high school, which was right up the street and where all of my hearing friends went. I didn’t want to be in a “special” school anymore. I wanted to walk to school with my friends and be a part of it all. I was the only deaf student in the entire school, and they gave me a full-time interpreter named Joyce Zimmerman. Joyce sat near my desk in every class and interpreted for me. She was awesome because she blended in, giving me space when I needed it, but was always there when I needed her. She would meet me at each class but did not follow me there. She let me be independent and did not come to recess or lunch.

  That year, I became president of the student council. When I first ran for office, I read my speech over the intercom and then had a friend reread it to be sure that everyone understood. Once elected, I used my voice to run meetings and do other things; Joyce would sign to me what people said. In ninth grade, I remained local as well, attending Naperville Central High School with my neighborhood friends and, again, was the only deaf student in the school.

  That was the year when things really began changing for me.

  Central High had so many more students and teachers than my previous schools, none of whom knew me or my family. Despite having my friends there, who were as welcoming as usual, and Joyce, who interpreted for me all throughout high school, I began feeling very isolated. My self-inflicted pressure to stay hearing still remained in full force and began taking its toll on me. Chris still had very high expectations of me, and because she was older than me, I looked up to her. She really believed I could be successful in the mainstream and continued to support my success. I would hear her voice in my head saying, “You’re not different; you can do it!” I didn’t want to let her down or let myself down. I was proud of myself for being able to manage in that hearing world and in a hearing high school, and that pride felt good.

  It was the era of Flashdance, and, believe me, I knew what was “in” with those hearing girls. Chris made sure of that. We went to see Rocky when it first came out, and she taught me the popular song from the movie, “The Eye of the Tiger.” She would tap the beat on my leg, and I mouthed the words. In the same way, my hearing friends taught me all the popular songs of the time: “Last Dance,” “Hard to Say I’m Sorry,” “Time for Me to Fly.” I so appreciated them for teaching me those songs because it made me feel like I was part of the group.

  But life was a mixed bag. I was missing things. At the Lutheran Church, I didn’t have an interpreter, so during my confirmation classes, I had no idea what was going on when they read from the Bible. I just sat there, wondering what was happening in the silence. Later on, my interpreter from school, Joyce, joined my church, so I got lucky.

  Once during summer vacation, I went to the movies with my twin cousins, Heather and Heidi. They were identical twins, beautiful girls with dark brown hair. They were my age, and we had grown up together. To them, I was just Brandi, their cousin, not Brandi, the deaf girl. I had gone to the movies a few times with my father—who was an avid James Bond fan. The movies were heavy-duty action and easy to follow, so I was looking forward to going with my cousins. Heather and Heidi were the most fun people for me to hang around with—always daring and getting into trouble. We fed each other popcorn and had sodas. We had gone to see the Chevy Chase movie National Lampoon’s Vacation (which wasn’t closed-captioned, of course).

  Perhaps it was because of the amount of dialogue, but I didn’t understand a thing. What’s so funny? I thought. As I watched my cousins laugh, while I sat there in silence, I was painfully reminded that my hearing was not what it was supposed to be. I was beginning to feel very different and alone.

  The thing about lipreading is this: even though I’m very good at it, at best I can only follow 50 percent of what’s going on, which is usually enough for me to get the gist of the conversation and respond appropriately, but sometimes it isn’t. One-on-one, I communicated very well. I did fine. But in a group, it became impossible to lip-read what everybody was saying. At night, it really became difficult when I couldn’t see my friends’ faces. Yet, I thought about my deaf friends, over there in the deaf program, whom I saw on the weekends and at other times, playing around and having fun with deaf people whom I hadn’t met yet, and I started longing to be a part of that.

  I was caught between two realities, yearning for fuller communication and to be around deaf people, yet feeling that gigantic pull toward the hearing world; my friends’ and family’s influence on me was just so huge. I knew that they were all well intentioned when they told me that I was fine in the hearing world. But deep inside, I began feeling more and more that I was different and functioned differently than they did, and that they were so wrong.

  Chapter Two

  CHANGED BY A DEAF PRIEST

  THE SPRING OF 1984, toward the end of my freshman year, was brutal. Torn between wanting to stay in the hearing world and yearning for a fuller connection with deaf people, I realized I needed to decide whether to stay at Central High or transfer the following fall to Hinsdale South, which had a deaf program and was thirty minutes from my home. When I mentioned it to Chris, she was extremely disappointed that I would even consider Hinsdale South. She just genuinely believed that Central was the best place for me and that I could make it there.

  I agonized over the decision for weeks; no one knew what I was going through,
not even my mother. I couldn’t express it, but at fifteen years old, I knew that I wasn’t just choosing a school—I was choosing a life. Staying at Central meant I’d probably go to a college such as Illinois State with my friends, marry hearing, and remain in that world. Going to Hinsdale South meant I’d probably go to Gallaudet University or National Technical Institute for the Deaf (NTID), marry a deaf person, and be in the Deaf World. Being on the fence—dabbling in both worlds but never fully embracing either—no longer felt tolerable.

  It was an overwhelming decision, yet my heart knew the answer—and had known it all along. I finally chose Hinsdale South and that year said good-bye to my hearing friends from the neighborhood. I couldn’t articulate to them why I was leaving; I just told them that I was going to South, to the deaf program. I didn’t know how to say that I felt tired and defeated from playing a game I knew I couldn’t win and wasn’t good for me anyway. How could I tell them that I was mourning the life I had known since I was six, or that the things I had done had been fun and had served me well but could no longer lead me where I needed to go? On some level, I think they understood. After that, I only saw them when we bumped into one another on the street, and it was always bittersweet.

  I’d made my decision in the spring but avoided telling Chris until school was almost out. I was too scared to tell her, for fear of disappointing her. Carrying that pressure around inside me all that time felt awful. I think she knew I was avoiding her. I remember the day I finally told her very well. I went to her house, and, through my tears, told her that I was leaving Central. She ended up being more upset that I had been so scared to tell her. She said that it was okay, that what was important was that I had “tried.” I walked home feeling so much lighter. I knew then that I was really done with that part of my life—and I wasn’t looking back.

  I had no regrets, but it was tough. Half of it was that I thought I would miss my friends and that I was disappointing them, which was devastating. But the other half, which I was finally acknowledging, was that I felt like they had disappointed me by telling me I was someone I wasn’t, by saying that I could function as a hearing person, and by making me feel that I wasn’t meeting their standards. I was very hard on myself, striving to stand tall, and yet I felt as if I had failed in their eyes.

  I prayed to find peace with my decision, find acceptance and peace with myself. I needed peace with my life, my family, my neighborhood friends, and the world. Although I didn’t agree with everyone’s claim that I was normal like them, I wasn’t savvy enough to explain to them how I felt or what I needed. I wasn’t able to say that even though I walked down the hallways in school with a big smile on my face, a deep-down part of me wanted to curl up in the corner and have everybody leave me alone. I remember walking over to the cornfields about a block from my house one day and just sitting there, in the middle of the stalks, trying to come to terms with it all. I was longing to hear some wisdom that would help me see the light. I didn’t want to feel like the lone soldier out there.

  I arrived at Hinsdale South and loved it. The school had 2,000 hearing students and 150 deaf students—so many more than in elementary school and junior high, as the deaf kids from each district came to Hinsdale. They all took classes in the deaf wing—except me. Even after making the huge decision to switch schools, I still avoided the deaf program and took all my core classes with the hearing kids, with the use of a sign language interpreter. Part of me still believed that I was smarter than the other deaf students, and I still needed to cling to what was familiar and to what I thought people expected of me. I was still entrenched in the hearing world and was not ready to loosen the ties.

  Even so, I took a few classes with the deaf kids, like Health and Consumer Education, and these classes ended up being my favorites. I just loved the direct communication and soaked it in; it was so much more fulfilling than finding out what was going on through an interpreter. I socialized with the deaf kids at lunch, in gym class, and after school, as well, becoming part of a group and the culture I craved.

  The summer between my sophomore and junior years, twenty of us went to a deaf camp in the Adirondack Mountains in Upstate New York; we all took the bus there together. This Catholic camp, called Camp Mark Seven, was run by a deaf priest named Father Tom. I had no expectations—my friends were going, so I went along. We arrived right before dinnertime and checked into our dorms.

  Whoa. I had walked into a different world, into Deaf Culture, and into the Deaf community.

  Everyone there was either deaf or they signed—the counselors, cooks, maintenance people, lifeguards—right down to the nurse. It wasn’t participating in the camp activities with my deaf friends that made the difference—I’d done lots of activities with them at school—the difference was that the entire staff was also deaf. Until that time, I had never really interacted with a single deaf adult. These days, it’s different; but back in the 1980s, most teachers for the deaf, like those at South, were hearing. My parents and relatives were all hearing. In the Deaf Culture, we talk about the 90 percent rule: 90 percent of deaf parents have hearing children, and 90 percent of deaf children have hearing parents. Over the years, I’ve met deaf children who thought they were going to die by the time they reached eighteen because they had never met a deaf adult. Many certainly don’t believe they can make it in the general culture.

  It was as if I could finally believe in my future.

  For the first time since I was six years old, I was signing with deaf adults in an environment where communication was 100 percent accessible to me. I had full communication. No more missing out on parts of conversations; no more feeling like I wasn’t being understood. For two whole weeks, I was smack in the middle of everything and soaked it up like nothing before—helping out in the mess hall and making meals with George the cook, and helping the lifeguard put away the pool chairs. When I rode home on the bus two weeks later, I immediately felt like my communication was gone—like the air was just being sucked out of me.

  My camp counselor, Carla, was a psychology major at Gallaudet College (later called Gallaudet University). She had an air of confidence about her—she was independent and had dreams of her own; having that camper-counselor relationship with her allowed me to see beyond Naperville and Hinsdale South and realize that there was a life out there waiting for me. Even though we rarely talked specifically about being deaf, I never forgot the time we did because her words have become my mantra for raising Zoe. We were sitting by the archery court one afternoon.

  “You think much about being deaf?” I asked.

  “You mean how it impacts your life and stuff?”

  “Yeah,” I said.

  “Not really,” Carla said. “I learned long ago that you need to make it your friend—you won’t get through life if you don’t.”

  “Hmm . . . never thought about it that way.”

  “Yeah, Brandi,” she said. “Whatever you do, you have to embrace that you are deaf, but don’t ever let it define you.”

  The camp was called Mark Seven because in the Bible, Mark 7 references Jesus healing a deaf person. I remember Father Tom telling us those particular verses—verses 7:31, 34, and 35. All of the campers were sitting down by the lake with the tall trees surrounding its circumference and providing shade, where every morning he gave his daily sermons and workshops; the outdoors was our chapel.

  “Jesus heals a deaf man,” he signed, his round-rimmed glasses reflecting the sunlight. “Looking up to heaven, he sighed and said, Ephphatha, which means, ‘Be opened.’ Instantly the man could hear perfectly, and his tongue was freed so he could speak plainly.” He continued, “Ephphatha means empathy—be thou open. When Jesus said it to the deaf man, it meant, ‘open your ears and you become hearing.’”

  A chill went up my spine. Immediately, I understood, “Be thou open,” to mean: be open to life, to people, to ideas; be accepting. Don’t judge. Already I knew that I was more open and accepting of others than most—like a mother figure—alth
ough I was too young then to realize that it was because of having experienced my own loss, of having become deaf. By fifth grade, I was able to discern what people were really thinking, yet not judge them. Even though I hadn’t walked in their shoes, I could understand them and what they were about. I’d made fun of the kids who were riding the “baby” bus one year, and the next, I was riding it myself. Although I couldn’t articulate these thoughts back then, on some level, I grasped that people’s differences added richness and soul to life and to being human. Hearing Father Tom’s words that day helped me to understand that a little bit better.

  Late one afternoon, Father Tom was talking to us down by the water, his straight, dark brown hair looking jet black, with the sun hiding behind the trees. He had a medium build and was wearing black pants and a paisley green shirt.

  “How many of you are proud to be deaf?” he asked, in his kind and unassuming manner.

  No one raised their hand. I remember thinking, This man is crazy.

  He continued on, “It was a difficult job for God to make people because he had to give each person a completely different personality and appearance.” He thought for a second and then continued signing. “So, to make it easier for himself, he made one recipe for the human body.”

  I sat there, listening intently.

  “Yet, he made a different body recipe, a special one, for deaf people. God put more effort into making this unique group of people,” he said. “Being deaf is a gift from God.”

  Wham. Bam. I felt like I had been punched in the stomach.

  It wasn’t that I heard him say to me that being deaf is a gift from God, but that being deaf is okay—not only okay but something good, if I let it be!

  Nobody had ever said that to me before. Oh, I’m sure that my parents, friends, and teachers wanted me to generally feel good about myself. But Father Tom’s words validated my very existence as a deaf person. They were a lifeline connecting me to Me, helping me to see that I wasn’t crazy for feeling different, that I felt different because, good God, I was different, and nothing that anybody could say would ever again make me believe otherwise.