13 May 2009

An Anniversary of Sorts

It's been in the back of my mind this year. Lately, there's been enough reminders that I have been taking time to muse and reflect on the fact that it has been ten years. Some days, it seems like it was just yesterday. Other days, it seems like three lifetimes ago. And it is absolutely incredible to consider all the ways my life has and has not changed in the past ten years.

Today, I am deaf. Technically, legally, truly deaf. Without the wonder of modern technology, I cannot hear a thing. Even ten years down the road, I still have a hard time thinking of myself as deaf. In my heart, my lifestyle, and in my mind, I am simply hearing impaired. Always have been, always will be.

I was born with a hearing loss, which was discovered when I was a toddler. I was promptly retrofitted with hearing aids, that at the time, I preferred in my cheerios and milk - much to my Mom's chagrin. I was sent off to school, and, honestly, thanks to the hard work of so many people, excelled. I was spunky enough to scold my kindergarten teacher, silly enough to lay down next to my baby brother without his diaper, and smart enough to be able to overcome the disadvantage being hearing impaired presents in the classroom.

Normally, after a few intensive years in preschool and regular follow-up throughout my school years, I would have been all set. I was taught that being hearing impaired was just a fact - much like my hair is brown or that I have ten fingers - I was never told "you are disabled," or "you can't do that." Just "try harder," "you can do that," or "speak up for yourself - tell them what you need." And I took those lessons to heart.

However, I further had the disadvantage of having a fluctuating hearing loss. A fluctuating hearing loss meant that, at any time, for any length of time, for unknown reasons, I would wake up without my hearing. In essence, I became temporarily deaf. Sometimes, I would be without hearing for a couple of days, or a couple of weeks, and in a few instances, a couple of months. There were certain times of the year that it seemed to happen more often than not, and my hearing loss was usually accompanied by dizzy spells. Losing my hearing was always a discouraging, but temporary, setback.

I can't imagine how my parents handled it before I could read, but once I learned how to read, I would rely on lipreading, finger spelling, and abbreviated notes to fill in the gaps when I couldn't hear. Because I was raised as part of the Oral tradition, I was never formally taught sign language. My parents, cruel but brilliant tyrants they were, insisted that I continue to go to school even when I couldn't hear. On the bad days, I'd sit there in my own little world. On the good days, I had a clue of about 25% of what was going on around me. Then, magically, my hearing would come back and life would be good again.

Now, don't get me wrong. I had a very happy childhood. Almost all my childhood memories are happy. I was a happy-go-lucky kid. Because a fluctuating hearing loss was all I knew, it never occurred to me that life could be different. I didn't like losing my hearing, but man, the mornings I woke up to find it had come back were greater than Christmas. Truth be told, I once told my favorite teacher that the only thing I was truly scared of was losing my hearing permanently. He sagely told me, "That wouldn't be such a bad thing," and I remember thinking he'd totally gone off that rocker.

My freshman year of high school, the fluctuations became much more severe - lasted longer, happened more often, and then, the bottom fell out. I'm fuzzy on some of the details - I think I selectively blocked out many of them:

I woke up one morning in January and was falling down dizzy. So dizzy that after two days on the couch without moving one inch, I wound up in the hospital in an attempt to stop the dizziness and bring back my hearing. Months passed, the dizziness slowly got better, and my hearing didn't come back. The doctors tried one thing after another, without success.

The day before spring break, I sat in the doctor's office with my Mom, and cried as the doctor finally told me, "I'm sorry, I've tried everything, I can't bring your hearing back."

Through the rest of the spring, there was much debate. I had, several years back, been implanted with a Cochlear Implant in one ear. For some reason, that implant has never worked. Should I try again with that implant? (No go.) Should I be reimplanted in that ear in case my hearing comes back? Should I be implanted in the other ear? Should I have a Cochlear Implant at all?

Eventually, it was decided that I should be implanted in my other ear. Three weeks after surgery, I was sitting in a tiny room with a computer hooked up to my head via lots of crazy wires. I had to sit, hooked up to a computer, and tell the doctor how loud I could tolerate a noise, and when the first time was I could identify a beep. My implant has 22 electrodes, which means that every time I get mapped, I have to sit there and identify the first beep and the "I can't stand it this loud!" beep 22 times. And then we have to re-test each of those 22 electrodes. It takes a long time. Even now, when I go to get the hearing levels adjusted, I'm physically exhausted afterwards.

When you go for 8 months without hearing anything, you can't tell if you're truly hearing something or if your mind is playing tricks on you. You see, deafness does not equal silence. I usually have some ringing in my ears, which can fade out or intensify at times, and sometimes I think I hear a melody. So, it took a long time that day for me to realize I was hearing those first few beeps as opposed to thinking I heard them.

My Mom finally went to get me something to drink, and while she was gone, the doctor turned on my implant. When she turned it on, I remember physically recoiling. It is jarring to the senses to suddenly go from silence to noise. But I also remember the excitement when we all realized I could hear my Mom instead of reading her lips. The way my hearing sounded when the implant was first turned on is nearly impossible to describe. Some say it sounds like Donald Duck talking; I thought it was like a really, really bad robotic voice. It didn't sound right, but I could hear!

The rest of that afternoon was full of excitement, surprise, exhaustion, and confusion. I could hear, but it was slow and difficult learning to understand what others were saying to me. I was hearing things I had not heard in 8 months, but I was also hearing things for the very first time too (I could now hear, at my worst level with the Cochlear Implant, better than I could hear with the best level of my hearing aid). Mom laughed when she had to tell me that the noise in the bathroom was me peeing. Who knew it made noise when you peed? "What's that?" became a common question.

Some of the new sounds I could hear included the fizzing when you open a bottle of Coke, birds, the refrigerator humming, clocks ticking, and on and on....even now, ten years later, I'm still learning and hearing new sounds. Some sounds make me happy to hear, others drive me insane. I turn my implant off when I'm vacuuming, or blow drying my hair, or when I can't figure out how to block an annoying sound.
It took a while to learn how to hear again. Yes, I could hear, but this was a different kind of hearing than I had before. I could easily say that even now, I'm still learning how to hear. It isn't always easy, but it has been a vast improvement over my fluctuating hearing loss.

I can hear music (and sometimes pick out the different instruments); I can talk on cell phones while walking down busy rush hour streets; I get irritated by humming refrigerators; I talk to My Love on Skype; I can hear my dangly earrings jingle and jangle as I walk; I can hold my own in conversations (except when in crowded bars and restaurants); I now know the dull roar of the ocean; I usually like the lull of raindrops hitting a window; and despise how the horn on my brother's car sounded like a dying duck for years.

But even more importantly, I can look back and realize how lucky I was to lose my hearing, and to lose it when I did. I had the help of my family when I couldn't hear and when I learned how to hear again. I was able to gain complete autonomy - I handled college with minimal hearing assistance, I studied Arabic for two years (and managed a respectable B average!), I moved to a city all by myself, I worked in restuarants and as a bartender, I have a great job, I don't have to worry about explaining how I can't hear on a given day, I can call friends on the other side of the world and gossip for hours, and while I may still have off days where I struggle to hear, or there are things that are just beyond my hearing ability (like telling the difference between my dad and brothers on the phone), my overall quality of life is far superior than what it would have been if I had continued to live with a fluctuating hearing loss.

Now, with the distance and wisdom of time, I can look back and see that my sage old teacher was right. Losing my hearing wasn't so bad after all. And that, my friends, is an anniversary worth celebrating.

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