Wednesday, October 01, 2003

The beginning

When I was a little girl, I used to think about what it would be like to be blind or deaf or mute. Like most kids, I'd even close my eyes and try to find my way around my house, trying to really "feel" what it would be like to be blind. Or I'd pretend I couldn't speak and think about how I would communicate with the world.

Trying to experience deafness was a different matter, however. Practically speaking, there was no way to do it.

I'd stick my fingers in my ears, but even then I'd hear the dull noise of air pressure against my eardrum. The utterly profound silence I imagined comprised 'deafness' was elusive. Even in our rural home, there was always some sound, some rustle of leaves or buzz of an insect, that chased away silence.

The elusiveness of duplication made deafness somehow even more mysterious than blindness. Adding to the mystery was the fascinating secret language spoken by the deaf - the possibly-magical ritual movements that were incomprehensible to me, but clearly meaning-laden for those using them. I would stare, fascinated, hypnotized, when I saw two or more people using ASL in public until my mother dragged me away or, embarrassed, chastised me for staring. I would pretend to use ASL at home in front of a mirror, annoyed that my clumsy gestures could not even pretend to the graceful flow of real ASL speakers. I learned to finger-spell, taught a girlfriend so we could send each other messages on the school bus. And eventually grew out of the fascination with blindness, and deafness, and muteness, and all handicap, as most children do.

Now I am thirty-eight years old, and I am losing my hearing.

In my late twenties and early thirties, I suffered a series of catastrophic gastrointestinal problems. My weight plummeted to 85lbs. Surgery after abdominal surgery did not solve the problem. I was fed intravenously; I had to have blood transfusions. Accompanying all these physical invasions were infections and, to beat the infections, I was given antibiotics - sometimes massive doses of them.

In a final, radical gesture, a bold surgeon's ingenious technique finally corrected my digestive problems and, shockingly, almost overnight ended years of misery. I gained weight. I ate normally. I went back to work. I got married. We bought a home. And I knew that every single day I was alive was gravy.

And then I noticed - or perhaps, more accurately, my friends and family noticed - that I was becoming hard of hearing. They had to repeat things. I kept the tv turned up too loud. The colleague in the next office had to come ask me to turn down my radio. I began using headphones to listen to the radio at work.

By this time, I myself was becoming conscious of a hearing problem. I had to ask people to repeat themselves more than once - to the point of embarrassing both of us. I began to dread meetings, which are an integral part of my job. I started begging off taking minutes, which was an aspect of that job, because I disrupted the flow of the meetings, so often did I have to ask for things to be repeated. In social situations I started nodding and smiling at the stories someone around the table told, picking up my response cues from those around us. If there was just two of us, it was easier to lean in, cup my ear, communicate; in a crowd, with background noise, it was easier to pretend. Easier and more dangerous, as when I realized with a start and an icy feeling in my stomach that the speaker had asked me a question and everyone is looking to me for my response. "Sorry, I didn't catch that last bit," I'd say weakly. I looked stupid, but at least not deaf.

I decided appearing stupid is considerably worse than admitting deafness.

I made an appointment with my doctor. He made an appointment with an audiologist. Yes, hearing loss. Slight to moderate. Cause? Quite possibly all those antibiotics that had helped keep me alive back when. How bad will it get? We don't know.

It got progressively worse. I began swallowing my pride and telling people "I am hard of hearing so if I have to ask you to repeat yourself, it's me, not you." This, in an attempt to make other people feel more at ease. Observations: People don't like dealing with the hard of hearing. It embarrasses them that you can't hear. People react differently to being told "I am hard of hearing, could you please speak up?" Some won't raise their voice. If anything, they're intimidated into lowering it. Some make stupid jokes about how deaf you are to cover their discomfort. If there is an audience in the room, people will frequently yell at you theatrically, far louder than necessary, for laughs. "CAN YA HEAR ME NOW?" they bellow, for the amusement of onlookers. When supervisors did it in front of co-workers I would swallow tears of hurt and embarrassment.

The overwhelming majority of people in and around my unique workplace speak English as their second language. This is a new country for many of them. They are having trouble swimming in North American culture, North American conversation, as it is. I am mortified at my increasing inability to understand them. I tell them I am hard of hearing. I wonder if others tell them this as an excuse for not being able to understand them. For not making the effort to understand. Far from trying to hide it, I was now trying to make sure everyone at work knew. Taped a flyer the audiologist gave me to my office door: "How to communicate effectively with a hard-of-hearing person". Maybe I'm trying to warn people. Maybe I'm trying to 'educate' them. How much harping is too much? When does it start to sound like a complaint? An excuse? When does it become a cause?

People begin suggesting blithely that you need a hearing aid long before you are psychologically ready to hear it. People get annoyed. People say, "Jesus, do something about it, will you?" People get angry at you for missing cell phone calls because you didn't hear the ring. You change to another ring, another, another. Test the phone by putting it in your purse, make it ring. I think I'll hear that. In the grocery store or your office or the street or a mall or the pub, you don't. Note to self: Get vibrating battery. Being a woman, where can you wear a phone next to your body all the time? Never mind, you'll think of something.

It got still worse. I went back to the doctor, back to the audiologist. Yes, worse. Moderate to severe. Right outside the pale grey "normal" range on her chart now. Yes, no doubt the antibiotics. How much worse will it get? We don't know.

(note: this post is dated approximately when it was written. it was published on June 25, 2004)