Susan Hajiani
Words: 3,908
[Memoir]



I can't recall now exactly when it happened--perhaps in 1953 when I was in third grade at Lincoln Elementary School. It was one of those normal, exciting days, learning to read, doing numbers, wondering if the boy sitting in front of me would fold up my assignment and slip it in his pocket because he had a crush on me. The bell rang and we all rushed outside, boys on one side, girls on the other. What to do with 20 exciting minutes of recess? Six or seven of us who were best friends had to quickly think of a fun game. How about playing telephone? A great idea. We sat down in a circle right on the playground and my friend Barbara started the game . . . whispering into the ear of the girl on her left, my friend Ruthie.

Then it was my turn but I wasn't quite sure what Ruthie said. I made something up and whispered it into the next ear in the circle. I waited for the message to get back to Barbara. She listened to the last person and looked dismayed. "That’s not what I said, that is completely wrong."
She seemed quite upset. The message was not supposed to be so far off the track. Barbara decided to back up and see what had happened. One by one, counterclockwise, each 8-year-old repeated what she heard and then it was my turn. I said my line and everyone pointed at me, "What? It’s her fault; it’s totally stupid. Now we know where the telephone message went haywire.
Right here, with Sue!"

The game was over, but for me it was the start of something new--a feeling of shame that descended, making my face hot and tying my stomach in a knot. This playground moment took up residence in my head and made me wary. I was going to make sure this never would happen again. From now on, no one would catch me being stupid at the game of telephone. What seems so odd is that I had no name for what was wrong with me. No one had ever called me deaf or hard of hearing. My friends complained, "Why do you say 'what?' all the time?"

I could not hear very well. No, I wasn’t actually deaf. People would have noticed that and labeled it if I did not respond at all. Still, there were a lot of times I seemed to be doing the wrong thing, a little off beat. So began another game, spawned by the telephone game, and I was the one who made it up, decided on the rules, and did not invite any other players to join me. The object of the game was to appear normal, not lose my friends, and especially not to appear to them as stupid. Of course, I had to constantly revise the rules to fit all kinds of seemingly ordinary situations to keep them appearing just that.

Taking a spelling test posed one of the most difficult challenges. Even from the front of the room, it was impossible to tell whether the teacher was saying "sunny" or "funny." If I was lucky, she might create a sentence that would clue me in to the word I needed. But I could allow myself to count on this. Suppose there was no sentence? No repetition of the puzzling word. The thought of failing the spelling test was not a pleasant one and I devised a way to prevent it. I memorized the spelling list forward and I also memorized it backward just in case my teacher decided to be clever and reverse the order. Since she never thought to be really creative by giving the list at random, I won my game. If I scored 100 percent, a feeling of relief hooked me on playing it again.

I was desperate to fill in the blanks, to make the connections that would restore everything to its proper order. The high and dangerous stakes of my game never occurred to me. I was setting myself on a long and lonely path where there were no safe havens to ask for help. It was all up to me to look perfect. In normal games, you win and you lose and everyone expects that as the outcome. But in my game, there was nothing in the rules about losing or going directly to jail. I had to win.

Of course, my strategy did not work all the time. On more occasions than I care to remember, I was exposed despite my efforts. Like when Mrs. McKinney gave the instructions as she turned to the other side of the class. Lip-reading, a skill I had developed unconsciously, was no help in this situation. Memory was also not an option. Certainly raising my hand and asking for help was out of the question. What else might work? I took a quick peek at the paper of the boy sitting next to me. Mrs. McKinney saw me. She said nothing but her beautiful face was no longer beautiful. She knitted her strong black eyebrows into a scowl, pursed her lips tightly, and shook her head slowly from side to side for an eternity. Lucky for me, the other students did not seem to notice my shame.

I felt sick to my stomach and my face was hot. What a horrible thing I had done. I still didn’t know I was deaf. Mrs. McKinney obviously was disappointed in me as a cheat. I wanted to explain to her, "I was not looking for the answer, I was only looking for the page number." But how could I do that in front of 27 fourth graders? No, definitely not possible. I was clever but not brave. My stomach took another turn. I wanted to run away and hide. I felt tense and different from my classmates. They seemed so carefree and easygoing while I struggled with my pretense of being a person who could hear.

Now it wasn’t just the game of telephone that I avoided. Nearly every game had some moment that could cause panic. The instructions, what was that . . . what did you do first? What are the rules? When it was time to play a game, I pretended that I was not interested or had other important things to do. It was a good time to disappear to the rest room, get a drink at the water fountain, or climb on the playground slides. At slumber parties, I feigned exhaustion and slept early while my friends chattered into the night. They were upset that I was not participating in their fun and decided to do something about it. They filled a bucket with water and dumped it on me to wake me up. They succeeded but I did not view my dousing as fun. I was deeply humiliated and stopped attending slumber parties.

Class was becoming more awkward too. At times I was not sure if the teacher was calling on me or on someone else. How many times I raised my hand to share a thought only to learn that another student had beaten me to it. Or I would answer when someone else in the back of the room was still talking. In-class films became another source of anxiety. As the images fluttered across the screen, I struggled to make sense of the distorted words of the narrator whose voice I could not make sense of and whose lips were nowhere visible on the screen. My heart and stomach fluttered along in rhythm at the thought of the pop quiz at the end of the film. In spite of my poor grades on these quizzes, I managed to increase my scores in other areas, keeping up the fiction that all was well.

Somewhere along the line, one of my teachers finally discovered what I thought was my secret. I believe I was writing at the blackboard and did not respond to her prompts. My first hearing test did not occur until I was 10 years old in the basement of Lincoln School while my classmates played ball outside the window. I cannot recall who administered the test but it was apparent to me that I was not doing well. The tester seemed quite perturbed by my lack of appropriate answers, and I was equally tense waiting for the beeps of the testing machine amid the screams of the ball game outside.

But all that came of the tests were some comments that I should sit in the front of the class and pay more attention. Unfortunately, my new education plan made it very obvious to the class that I could not hear well. In those days, the class was most often seated alphabetically, starting with the Andersons and ending with the Zanders. My name started with H, propelling me into prominence as out of order again. The day seats were assigned in each class became an additional burden, but I had no idea how to deal with this problem. I simply hoped my new classmates would forget my seating embarrassment.

When I got to junior high school, the telephone itself became a terror to replace my game. I later learned that Alexander Graham Bell had invented the telephone as a result of his quest to help his deaf wife. The irony of his well-meaning efforts, which only caused me agony, was all too apparent.

Not only was I missing out on a lot during class, I was also missing out on all the long telephone discussions which teenagers have after getting home from school and into the night, making sense of what happened in biology class or in the halls. My phone did ring but it was hard to giggle and be relaxed when I had so much trouble deciphering exactly what was being said. I marveled that some girls talked on the phone for a whole hour. A couple minutes were more than enough for me.

I showed up at the wrong house to baby-sit several times and, of course, my would-be employers decided that I was undependable. On the few jobs I landed, I worried that I would not be able to identify suspicious sounds.
There was a popular horror story about that time of someone entering a home and harassing the babysitter from the upstairs extension.

Once I misunderstood the name of a boy who was asking me out. I told him no, when really I would have been thrilled to go out with him. He was disappointed and mentioned it to my girlfriend. He did not call me again. I didn’t hear the phone ring when I was home alone and my friends started to say how hard it was to get hold of me when they changed their minds about the place or the time. My best friend even decided that I wasn’t much fun, never got the joke, and should not be invited at all.

It made me feel so sad and angry; didn’t they know how hard I was trying? Of course, they never noticed I had memorized nearly everything that happened in class or that I was lip-reading or smiling constantly? How could they notice when I was so adept at keeping my efforts a secret?

My family still had not acknowledged or accepted my hearing loss. They were all preoccupied with their own concerns and often found my blunders amusing, which only added to my shame. "What a strange answer," they would say. "Sue seems a little aloof; sometimes she is unpleasant and tense, even has a bad disposition." I took it all to heart. It certainly seemed much more serious than not being able to hear--something I was not about to admit. Besides, it seemed more reasonable to have a bad disposition than a hearing "problem." You could work at changing the first but not the second. And I did desperately want to blend in. I added new techniques to camouflage my bad disposition. I smiled and smiled. I volunteered to erase the blackboard. In discussions, I agreed to the majority because I wasn’t sure what the choices were.

Thus started another variation of the game. Subterfuge had not served me well, so I would try self-improvement. I found a lip-reading instructor who mouthed to me short passages from the "Life in These United States" section of the Readers’ Digest. He was amazed to see that I had already learned this skill in my survival game. However, he failed to mention that only around 30 to 40 percent of speech is visible through lip movements, leaving the lip-reader to figure out the remaining 60 to 70 percent. And most real life situations are much more complicated than the simple vignettes in Readers’ Digest. Even with my efforts to gaze relentlessly on the moving mouth (or mouths) in front of me, I continued to lose the connection. People, especially men, sometimes asked why I was staring at them so intently. "Just interested in what you are saying," I would lie.
It was easier to lie than to explain I was deaf and that a walrus style mustache or dangling cigarette made my game harder to play. Not only did I want to avoid discussions of my failure to lip-read; I hated the pity and shock that sprang up if I had to admit to being deaf. Well-meaning people would recoil and say, "What a shame. Oh, I am so sorry." Then they would inquire either "Can you lip-read?" or "Why not get a hearing aid?"

By the time I was thirty, I decided to try hearing aids. My hearing had been tested many times before, always with disappointing results. The doctor or audiologist would sigh gravely: "Your hearing is worse; you are very deaf." I never asked for an explanation and indeed they never offered any. Nor did they explain the tests to me in any sensible way or suggest hearing aids or sign language. I was very focused on getting out of the office as quickly as possible. I had developed a certain toughness or resignation in my struggles which did not include looking for answers or cures.

The audiologist would start with the faintest sounds in his search to assess how much I could hear. Beep. "Can you hear that?" I was supposed to raise my finger at the sound so he could mark his graph of frequencies and decibels. But I heard nothing for a long time and sat there wondering if it was time to raise my finger or not. My tester progressed up the sound scale to 90 decibels. Roar. "Can you hear that?" He seemed relieved to finally get an entry on the graph that would complete the audiogram and give him an idea of which powerful hearing aid might make me hear.

But the hearing aids only slightly improved my wild guesses at what was going on. I was still left with my struggle to pass as normal and appear to understand the myriad daily events that engulfed me. Plus, the amplified noise and the constant stress had caused a new problem: migraine headaches.

The migraines appeared at odd and unpredictable times, only occasionally when stress was most evident. I would be out shopping, looking through a rack of dresses when my head would unexpectedly begin to throb and little stars and dots would appear in my vision, swim around and leave a black hole. Or one side of my tongue or my right arm would go numb. It was very frightening and the first time it happened, I rushed to the emergency room where they checked me for a stroke. The doctor prescribed a powerful drug that decreased the symptoms but did nothing, of course, to alter the underlying reason for my headaches, my ongoing, stress-filled game of normality. The migraines alternated with something even more ominous:
panic attacks in which my heart raced and I felt absolutely trapped. It seemed I would die if I could not escape before anyone noticed my flushed and sweaty face. The panic attacks were very specific to communication situations when all my coping strategies had led to a point blank misunderstanding, leaving me stranded on the beach of my deafness. And I did not know how to be deaf.

Parallel to my struggles with my deafness, I proceeded with other areas of my life. It seemed as if I was leading two lives. I went to college and graduated with honors with the help of my powerful memory that had been developed throughout grade and high school. My major was technical communications. I wanted to be a newspaper reporter but by the time graduation arrived, I was starting to realize the impact of my deafness and knew it would never work out. I decided to pursue a master’s degree in political science with the thought that I could be involved in editing.
Since I was not in the habit of exploring my very personal deafness with others, I did not think to seek advice on how to deal with my career conundrum. Among the 10,000 or more students at the university, I now know that I could not have been the only one struggling with this issue.

Then I married, had children, and worked at a variety of jobs in editing and publications but when the telephone rang, I quickly left my desk so my seatmate could answer the phone. Nothing much had changed over all the years except that my terror was increasing along with my expertise. By this time I was in my forties and I knew I would soon become totally, profoundly deaf. In spite of considering myself an intelligent person, I still did not have a clue about what to do with my knotted stomach, my migraine headaches, my panic attacks, or my deep sense of shame as my body continued its rebellion at my psychological fraud.

I wasn’t really any different than the 8-year-old on the playground in spite of my efforts all through the years. I take that back. I was different. In spite of my game, I was not making the connections that would make sense to my life and make me feel good. My life, the real me, was as far off the mark as the message I had delivered so long ago on the playground of Lincoln School. There were only a couple parts that were right. I had a devoted husband and two beautiful sons. The rest was gibberish, carefully crafted by many years of my determined but misguided efforts. In spite of this recognition that I was a fraud, being deaf was still not what I had in mind. But I did have a creeping suspicion that I needed to stop playing my game and try something else.

The first "something else" I tried was volunteering for a disability council at work. By this time, I was no longer looking for acceptance of my pretend self but acknowledgement of my reality. My colleagues had, not surprisingly, already realized I was not hearing them. My boss, however, was not happy when I took my old nemesis of telephone communications by the horn. I asked for a special telephone for the deaf, which has a keyboard (a TTY) at my desk so I could make and receive calls to my husband instead of asking a peer to call for me. The monthly cost of the device would certainly add up, my boss cautioned me. I was very insensitive to his concerns.

I toyed with the TTY for a while but could only connect to others who had one also. Since I didn’t know many deaf people, my life did not change radically. But the machine was right there on my desk in public view . . .
my badge of deafness. I had stopped hiding in the shadows of the not perfect me.

Little did I know that I was about to become the recipient of the spoils of a hard fought battle when the Americans with Disabilities Act was passed in 1992. Activists in Berkeley, California, had started this effort of accessibility for wheelchairs and spent much time demonstrating and lobbying to turn their dreams into law. They wanted equality of access in housing, education, employment, and, last but not least, telecommunications for the deaf. When the law finally passed, deaf people were assured statewide relay services. It was a laborious system with the deaf person typing in a message to an operator. The operator then voiced it to the hearing caller and back again through the conversation. Tedious, yes, but very liberating also.

I started making calls here and there. First, I called a few friends. Then I called the bank to check my account. It seemed amazing to be making these calls on my own instead of guiltily working up the nerve to ask someone else to do me this favor. A few people hung up on me because the relay operation took a lot of time, or they thought I was soliciting money for a "handicapped" organization. However, it seemed more irritating than shameful. I was shedding some of my humiliation and liked the feeling.

How nice it would be to say my life was immediately made whole by the technological and legal revolution that restored the telephone to my life after years of torment by that jangling instrument. I enjoyed the irony of the situation, but first I had to work on undoing all the damage of my efforts to avoid the telephone whether in play or reality. I had the habits of many years to conquer and even though I had begun to realize they no longer served a purpose useful to my life, my reactions seemed to be a matter of instinct, deeply ingrained. I was always on edge, waiting to bluff or escape.

I was still having migraines and panic attacks when communication broke down. It was slow going and I was alone at the beginning of my awareness, especially since I had not learned how to connect and ask for help. But the possibility of connecting was there; it snaked off my desk TTY, outside across the wire to wherever I could think of going. I started talking to other people with various disabilities. I went for counseling.
I called to register for sign language classes. Through enormous effort, this time positive, I learned sign language and became reasonably fluent though I could never match the skills of a born deaf signer. By doing this, I was able to pursue a master’s degree in social work and a new career working with people with whom I could communicate. Along with this came a new sense of acceptance and the pleasure of life without migraines and panic attacks. I was on my way to leaving behind the haywire Sue who had lived in my chest and head for such a large part of my life.

A few loose wires remain. The message still goes awry sometimes and when it does there’s that old, familiar feeling that I’m not connected and the sudden urge to escape, to hide, to fix it up. And I fight it down and sign, "Say that again please," with the relief of knowing it is a real, imperfect, human request and not a game.

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This piece first appeared in The Tactile Mind Quarterly.