Saturday, May 29, 2010


The odd part is that I decided to get an implant at all.

I had dinner with a friend last week, and when I told her about my CI, she laughed and said, "You? I'm shocked." But, really, if you had told me one year ago that I would do this, I would have been shocked too.

Until this past October, I insisted to my family, friends, and anyone who knew me that I would never be implanted. It simply was not an option. It would destroy the residual hearing that I did have left - and then, if by some mistake the internal processor did not work, what would happen? I would be stuck in silence, forever. Because of the nature of surgical modification, there would be no test trial. No going back. I regarded the prospect with sinking horror. With hearing aids, I may not hear much, but I do hear. Every morning when I turn them on and shake my brain out of silence, I walk around half-muttering to myself, as if gaining reassurance from the sound of my own voice. It gives me equilibrium. Before this year, I valued that precious hearing too much to give it up, even if with a CI I stood the chance to gain far more. Psychological researchers say that people, as a general trait, are risk-averse. I suppose that's exactly how to describe me.

Besides, even though it's been over twenty-five years since the technology was first introduced, cochlear implants are still controversial in the deaf community. The sign for "cochlear implant" represents a viper's fangs sinking into the side of the skull. This, other deaf people have told me, is not positive. Essentially, some of them believe, receiving a CI is somehow akin to being bitten by a viper. The internal processor is a foreign device imposed on the deaf by the hearing world, by well-meaning but ignorant people who think that being deaf is a tragic disability that needs to be "fixed." (Deaf people, in general, rebel against any suggestion that our hearing loss reflects negatively on our abilities or self-worth.) The external processor, in its unwieldiness, only adds to the stigma.

Before I go any further, perhaps I should make a distinction between deaf and Deaf. Little-d deaf people are generally people who lose their hearing later in life, or who disengage completely from the Deaf world. I consider myself deaf, because even though I have a congenital hearing loss, I live and function predominantly in the hearing world. I have few remaining ties to Deaf culture - for, with rare exceptions, all of my friends are hearing. Of these hearing friends, only a handful sign more than a small assortment of random words and phrases, and most do not sign at all. Considering my level of hearing loss, I would like to think that I cope very well. I speak and lipread, striving to function as much like a hearing person as I can.

On the other hand, I think of the term Deaf as embodying an attitude and a cultural outlook more than a physical characteristic. For Deaf people, being Deaf is something to be proud of, just like being French or Italian. There is likely no other disabled group in the world that bands together in this way. Blind people don't, wheelchair-bound people don't, learning-disabled people don't. These groups may share common experiences or sentiments, but there is no such thing as, say, Blind culture. The reason that Deaf culture exists, I am sure, is sign language. Because deafness is, at its heart, an inability to communicate normally with other people, it is something that requires a visual language to surpass the barrier. As any linguist will tell you, along with language arises culture. For big-D Deaf people, deafness is not a disability at all, but a rich and vibrant lifestyle. The tradition of Deaf people encompasses everything from not speaking and exclusively using ASL to going to Deaf schools and interacting predominantly with other Deaf people. The Deaf community is very small, and because Deaf people tend to have a harder time in the hearing world, they sometimes disdain any efforts to fully "assimilate" with the other side. Assimilation, of course, includes cochlear implants. (A note: I am somewhat oversimplifying this divide: there is a spectrum between deaf and Deaf, and many people are accepting of both the oral and the sign language traditions.)

Although I was mainstreamed from kindergarten on, I went to a Deaf preschool and still had regular, though infrequent, contact with other Deaf people through my childhood and early adolescent years. This contact, mainly through scattered friends and a camp for the Deaf I attended every summer, kept Deaf culture constantly with me. That outlook may not have defined my identity, but it contributed to my perception of myself. Although I did not always agree with Deaf viewpoints, I understood their mindset regarding CIs. Being deaf, I felt, ought to be something I accepted about myself. It ought to be something I could cope with without resorting to outright surgical alteration. Surgery meant there was something to be fixed, something about me that could never be good enough. Getting a CI skewed the focus: it made it all about hearing, about not accepting myself as I was, about trying to fix what was wrong with me.

So what caused me to reverse my viewpoint? I think the answer, in a word, is college. Before I graduated high school and left home to attend a university a thousand miles away, I had always had the support of my family and close friends. No matter what happened, I knew I could come home and communicate with someone. But when I started college, at a university where I was the only deaf undergraduate, all of this changed. I was surrounded by people I did not know, people who in turn knew nothing about communicating with a deaf person. Instead of a confined sphere in which I could feel comfortable, I had thrown myself into the full-fledged college lifestyle, a place of constant interaction with different professors and students, a place of crowded parties and large social groups and scattered conversation. This transition is difficult for anyone, but for me it was terrifying. I felt the full extent of my isolation. I felt as if I had plunged into a vast world that had not been designed for me. Although I had sign language interpreters for my classes and extracurricular activities, the rest of the time I was on my own. Lipreading, I soon found, was never enough. Some wonderful friends made efforts to include me, but many days I felt like I could barely cope. Although it ended up being a beneficial and stimulating time, in truth freshman year was an ordeal. I loved my university, but I did not love myself. And I realized that this was only the beginning of real life, of a world filled with sound. I had chosen to take this path. And I was left asking, How can I ever do this?

After spending the summer at home with family, I fell back into my old relaxation and rhythm. I again felt like myself, like Rachel. Most of the time, the word "deaf" was removed from the equation. Hence my culture shock when I returned to college in the fall of my sophomore year. I was prepared for it this time, and I knew that I could survive (after all, hadn't I survived before?), but this somehow did not make it easier. I interacted with old friends and made new ones. More and more of the people I knew expressed an interest in sign language. Overall, I felt more assured and self-confident. But, in certain moments, I was just as isolated as before. It was neither my own fault nor the fault of the hearing friends I had; it was just a fact of being deaf. Accept it, I told myself. You can't change it. Be content. I had come to view my circumstances as a test of strength and will, but this perception often crumbled in the face of despair. Increasingly, I came to resent the idea that I did not have a choice.

I remember, a few nights in early October, still at the beginning of the academic quarter, lying in bed at night thinking exactly that. I wanted a way out. I could not do this for myself, could not break through the wall of my silence to live the rich life that I wanted. Already an introverted person, in some ways I had become even more reclusive since coming to college. I resented this, just as I resented thinking of my situation as inevitable. I wanted to change something - but wasn't I already doing as much as I could?

The thought came to me: No. I was not. It wasn't inevitable. I had more to offer. And there was another option, an option that I had never allowed myself to consider. I did not want to think of it as a silver bullet or magic cure, for I already knew it was not. But it could help, if only I put aside my fears and my pride. It needed not be a political decision at all, but a way of pursuing the human connection I longed for. It need not degrade my dignity as a deaf person, but increase it.

That's when I first considered getting a cochlear implant.


  1. I quit writing my blog on for several reasons.. professionally, I have to be careful of what I write. Now days, all of this can be researched by current or future employers.
    As many of me employees and bosses joined me in my journey of cancer as it was very public since we go through chemo, then a very serious surgery situation, I had no problem having them read about my experiances. But as I came back to work, it was important for me to maintain some sense of finality to my health situation. Current economic times dictate that I have the ability to lead a company and not be a drain on it.
    If you were to see me in person, you would never be aware of my health limtiations. Though, I still go to a doctor quite a bit, and still have need for the implant, which they all know about.. I am careful to join them into my conversations too deeply. At home, though quite a differnt story.
    I too have a brand name I have researched. It is the AMS 800. A top brand in Urology control. You do not have to look it up, but like you, I have done a lot of research and have talked to others that have it, for the good or the bad. I actually had it implanted last fall.
    The surgeon nicked my uretha and it all got infected and had to come out.. There are no easy implants, and I have been trying to get uninfected since last July. 9 surgeries and counting.. This is not to scare you, I would do it all over again and am, however make sure you find the best surgeon. I was finally sent to 'THE ONE".. The "ONE" is one the one who corrects others mistakes!!

    Any way, have to go.. Love you very much..


  2. Now you got me thinking about blogging again...Always a Kolb making things difficult. If I do, it will be on where I do get involved in answering other peoples concerns about bladder cancer. I have not been silent, and have taken my situation as a gift from the Lord to get others involved or educated in the conversation of cancer.. My bcan name is NEOMAN and you can find my contributions there. I can create a blog..I most likely will.. Thanks Rachel..