The First Step

I burst into this world healthy, pink, and insanely adorable, only to contract a staph infection in the hospital where I was born. The medicine the doctor used to save my life destroyed the nerves in my cochlea, resulting in severe-to-profound deafness in both ears.

For those of you unfamiliar with audiology terms, there are different degrees of hearing loss: there’s normal (best), slight, mild, moderate, moderately severe, severe, and profound (worst). I’m severely deaf with certain sounds and profoundly deaf with others. So, basically, I totally blow at hearing. If there were such a thing as hearing contests, and I for some reason entered one, I’d walk away with a shame-soaked participation ribbon peeking out from my back jeans pocket.

But–I don’t give a crap about winning hearing contests. (After all, there are plenty of other hypothetical contests I’d kick ass in…. parentheses contests, for starters.) I’ve done the best I could with what I’ve had. Thanks to my parents, who sent me to a school that employed a fabulous system called Cued Speech, I was able to become quite adept at reading lips. That, along with a positive attitude, helped me get by in the hearing world. It’s not that I rejected the deaf world. I just was never around it much, mainly because of the choices my parents made for me. The hearing world was, and still is, all I’ve really known.

When I was about twelve years old, I was told by an audiologist that I’d be a good candidate for a cochlear implant and had I ever considered getting one? Um, you mean shave my hair and wear a magnet on my head? I’m about to start the seventh freaking grade–I don’t think so! ::snaps gum::

Seven years later, after I began college, another audiologist told me the same thing. No longer bogged down by teenage insecurities, I briefly considered it, but ultimately felt too overwhelmed at the prospect. I was dealing with college and the untimely death of my mother. The thought of having invasive surgery at that point in my life, not to mention the amount of therapy and hard work afterward, sounded downright terrifying. Plus I had it in my head that there’d be a cure (stem cell nerve regeneration) any day. Having a cochlear implant would mean destroying my cochlea—making any cure moot.

At the age of 26, when I first started dating my husband Matt (who is hearing), he asked me if I had ever considered an implant. I shrugged –not really. When he pressed, he quickly realized I knew next to nothing about cochlear implant technology. He knew more about it than I did after reading about it for a few days and couldn’t understand why I had never researched it. I hedged his questions with vague responses. He quickly dropped the subject, after sensing my discomfort. He didn’t want me to feel like he needed for me to “change.” He loved me the way I was.

I didn’t research cochlear implants after that conversation, despite secretly being curious. I’m not sure why. I think a part of me was scared. Scared of the surgery, scared of it not working, scared of getting an implant and finding out shortly after that there was a cure on the horizon, scared of having a magnet on my head, scared of being too old. I felt a little stubborn, too. Why did I need to hear better? Wasn’t I already doing a good job of acclimating to the hearing world?

When I was 29, I met with a new audiologist to upgrade my hearing aids. Like the previous audiologists, she told me I’d Be A Good Candidate For A Cochlear Implant. This time was different. I didn’t shrug it off. See, she was born deaf, like me, and had gotten a cochlear implant in her early thirties. And what’s more, she loved it and said it was one of the best decisions she ever made. I found her story so inspiring. This conversation planted a seed in my head that slowly sprouted over the next couple years.

A few months ago, shortly after my 32nd birthday, I met with her again for a hearing aid repair. I asked her a few questions about her implant and admitted that I had been thinking about getting one. She nodded approvingly and gave me the email address of a cochlear implant audiologist from Northwestern Hospital. I went home and stared at the email address for a long time. The first step. Was I ready to take it?

I was.

And now here I am, my head throbbing, my hair matted with blood, my eyes glazed over, my stomach in knots from vomiting repeatedly, my face bruised and puffy, my throat bloody from the tubes shoved down my throat during anesthesia—recovering from the cochlear implant surgery I underwent yesterday morning. And I’m smiling.


Pre-Op Thoughts

I was as surprised when she said that she wanted to go see an audiologist about a cochlear implant. She had turned the operation down twice: once when she was little and another time during college. She just wasn’t ready for it, and maybe the technology wasn’t quite ready for her either.

Like most of the hearing world, I didn’t know what a cochlear implant (or “CI”) was before I met Lindsay. A device that simulates hearing in deaf or hard to hear people. A “bionic ear”. I just knew that she didn’t want one. She remembered a classmate getting one, and not liking it. Invasive, and scary. But she wanted me to watch the fascinating movie Sound and Fury, about a two brothers, one deaf with deaf children, and one hearing with deaf children, that become estranged over the subject of cochlear implanting.

After the movie, which is neither pro-or-con CI, I read up on the device. There are some excellent books on the subject, and particularly the subject of getting implanted later in life. Here’s one. And here is another. They give fairly honest and unbiased views. I also read Oliver Sack’s amazing book about deaf culture and the importance of sign language (and of language, in general), Seeing Voices.

We would talk about it, a little. About why she hadn’t wanted to get one, and whether she would ever consider it. Those conversations were a little uncomfortable for me; I had to be as careful as I could not to sound like I wanted her to have one, even if a part of me did. If she was more involved in a deaf community, if she was fluent in sign language and preferred to communicate with it, I’d be learning ASL now, and she probably wouldn’t be considering a CI. But Lindsay does not have many deaf friends. She has always been assimilated into a hearing world. For the most part she is fine with that situation, and we are definitely fine with her. She accepts that she’s handicapped, but it is rarely an issue in today’s world of texting and closed-captioning. As she says: “It’s a great time to be deaf!”.

Every once and a while, though, it hits her. Very rarely. But sometimes I find myself consoling someone that is in-between worlds: not a part of a Deaf community by choice, but not completely able to be a part of the hearing world, either. After spending hours trying to call a government agency using TTY, or when trying to follow toasts at a wedding and finding it impossible, or having to constantly ask what people are talking about at a dinner party. And I’m always surprised when she needs a shoulder to cry on in these situations.

These are rare times that she feels this intense frustration at a world that she can’t fully experience due to her handicap. And they are the only times that I have wished that she could hear. And that is the truth. Because even though Lindsay does not choose to be a part of a Deaf culture, I know that her deafness is a large part of who she is. It defines her as much as being from Chicago defines her, as much as having a sense of humor defines her, as much as being a beautiful brunette does. And, in the way that all of those things fade into the biological makeup of one’s personality, I don’t look at her and think “I have a deaf wife.”

This cochlear implant will not magically make all of these frustrations go away. Neither of us believe that. She will most likely always have to rely on reading lips to communicate. There is no promise that she’ll be able to talk on the phone. But if she works at it, there is a chance that she could improve her speech recognition – hearing and understanding words without reading someone’s lips – by 50%. She might, with practice, be able to enjoy music more. And if it can make her life a little easier, if it can take some frustration away, it’s worth a try.

She’s a perfect candidate. Her brain may remember some sounds that she heard at a very early age. She is young and very intelligent. But more than anything, she is a determined person that works very hard, and has a hunger for learning new things. She is the most positive person I have ever met. She can do anything she sets her mind to do, and she does it well.

This blog is a chronicle of the experience of being implanted with a cochlear implant, from two sides: hers and mine. I hope it helps anyone thinking about getting a cochlear implant, and anyone that is in love with someone thinking about it, too.