Cochlear Implant Decision

One thing I have been meaning to announce on this blog is at the end of the month I will be getting a cochlear implant. This is a pretty big decision. I’m still pretty nervous about it, but excited too.

A cochlear implant (CI) is a surgical procedure when they put a special electrode in your cochlea. The cochlea is the snail shaped thing inside your ear that sends the information to the brain. In a normal cochlea, sound causes little hairs to move and that movement sends information over nerves to the brain.

For more information see this website:

http://hearingloss.org/content/cochlear-implants

and Wikipedia actually has some good images though I haven’t had a chance to actually read all the text:

http://en.wikipedia.org/wiki/Cochlear_implant

For someone like me with sensory-neuro hearing loss, the hairs in the cochlea don’t work very well and only respond to extremely loud sounds like those produced by a hearing aid. Unfortunately, no matter how loud the hearing aid is, there’s till gaps in the quality of the sound which make it hard for me to understand speech. I rely a lot on speech reading (aka lip reading) to understand what people say. If I can’t see the other person’s face or there’s too much background noise, I often have no idea of what they are saying. They might as well be one of the teachers in the Charlie Brown cartoons.

The implant actually has two major parts. The electrode in the cochlea is connected to a magnetic disc that lays just under the skin behind your ear. A speech processor with a microphone sits on your ear just like a hearing aid. But instead of connecting to an ear mold to send sound into your ear, it has a short cable that ends in a magnetic disk that sits on top of the other magnet under the skin. The processor sends information through your skin to the implant which stimulates the cochlea which then sends the signal to your brain.

There’s no wires or anything sticking through the skin, but they do have do drill a hole in your skull and thread the implant into your cochlea. They also shave down a circle in the bone of the skull behind your ear so that the round disk part can rest in the depression right under your skin.

A CI can dramatically improve speech comprehension for someone at my level of hearing loss, but it’s a pretty major decision. While it’s pretty low risk surgery, they will be drilling a hole in my skill and it takes about a month for that to heal up. Also, you can’t undo the surgery. Second, in most cases, inserting the electrode will destroy whatever hairs and residual hearing are left in the cochlea.  For someone who’s completely deaf in that ear, that’s not much of a concern. But in my case I still get some benefit from hearing aids, so it makes me a little nervous to give that up. After the surgery, that ear will be completely deaf unless the processor is turned on. Third, the sound you get with an implant is different. It takes a while (up to a year) for the brain to get used to it. Fourth, while speech comprehension usually improves dramatically within a few month, music may not sound right any more.

So for a long time, an implant was something that I would have considered only if I lost all hearing in one of my ears. It’s not easy being hard-of-hearing, especially with a loss as severe as mine. But I’ve been at the same level for a long time, so it’s familiar to me. There was also the fact that I didn’t know anyone with an implant.

But when I started attending Hearing Loss Association meetings, I meet a lot of people with implants who were very happy with them. Then a friend in the neighborhood with hearing loss similar to mine went ahead with the implant. Learning from his experiences helped me feel much more comfortable with the idea of going ahead with the surgery.

But it’s important for me to keep my expectations realistic. First of all, even in the best possible outcome I still wouldn’t have normal hearing. It would be much better than what I have now, but I would still need to rely on speech reading in some situations, and noisy environments will still be very challenging. CI’s aren’t a magic cure, but they offer a dramatic improvement over hearing aids.

Second, it takes time and effort to get the most benefit from the implant. I have to wait a month to heal from the surgery before they activate it. Once they activate the implant, it takes a while for the brain to get used to the new signal, so at first my hearing may actually be worse. But over time the brain gets used to the implant and the audiologist adjust the program on the processor. They recommend doing some kind of rehab such as audio books, starting with simple kids books to give you practice. But some people say even after you’re used to the implant, it can be tiring listening to speech.

Many people hope for a “rockstar” activation where they are able to understand speech right away. I’m trying to keep my expectations low. I think it would actually be kind of cool if at first all I hear is strange robot sounds. I’m hoping if I keep an open mind and a sense of humor the process will be fun rather than stressful.

It’s a scary decision, but I think it’s the right one for me. Over the years I have tried a lot of different strategies and gadgets. I have taken sign classes and gotten more involved with both the deaf and the hard of hearing community. I don’t mind wearing hearing aids, but it’s still frustrating missing so much of what’s going on around me. I think that the improved speech comprehension of the implant will help me both professionally and in my overall life. Being a husband and a parent isn’t easy for anyone. But it’s hard on everyone when you’re constantly unsure of what others in your family are saying.

I know that many Deaf people are happy the way they are and are not interested in getting implants. I certainly respect that. But as someone who grew up and still lives primarily in the hearing world, I think this is the best decision for me.

The Hard of Hearing/Deaf Experience

Lately I’ve been on another Deaf/hard of hearing experience reading binge. I recently read “Deaf Again” by Mark Drohlsbaug and just finished “Alone in the Mainstream” by Gina Oliva. In some ways, both authors describe experiences that I identify with: the challenges of growing up hard of hearing, trying to keep up with what other people were saying, and often feeling left out and isolated. There’s often those “aha” moments when they describe something familiar that I thought only I had suffered through. In particular, both describe that irrational sense of shame and embarrassment when they are having trouble understanding what hearing people are saying. I’m definitely familiar with that tendency to blame myself, and think if only I tried a little harder I should be able to figure what is going on.

In other ways their experiences (and the experiences of many of the other “solitaires” described in Oliva’s book) make me realize how lucky I was. As I’ve noted on this blog before, I had some rough patches when I started school, but after I got my hearing aids, things settled down. From then on, I always did pretty well in my classes. I never had any trouble with bullying and if anyone made fun of for my hearing loss, I wasn’t aware of it.  Other kids were often curious about my hearing aids, and I was happy to explain that they were “like eyeglasses but for my ears”. So while I was different, I usually felt different in a positive way.

The only time I remember being singled out in a negative way was when the gym teacher was lecturing a class about their bad behavior and how everyone should know better. “After all, none of you are mentally retarded! Except Doug.” Everyone turned to look at me, and my face burned. Fortunately, I already had a low opinion of this teacher, and my opinion of her only went lower when I realized she didn’t know the difference between being intellectually disabled (as we would now say) and having a hearing loss.

In any case, in spite of the fact that my hearing got worse until it stabilized right on the border of severe/profound, I graduated from a very academically competitive high school, completed an undergraduate degree, and went on to get a PhD. Since then I’ve worked on a variety of health behavior research projects. While I was in graduate school, I met my wife, and we now have two beautiful daughters. So I’m proud of what I’ve accomplished, and in many ways I would be considered a main stream success story.

However these books also raise some uncomfortable questions. Both Drohlsbaug and Oliva describe a classic turning point common to many others in the Deaf community, when they came to Gallaudet and finally felt part of the community. As I’ve mentioned before on this blog, one of my regrets is that I’ve never become fluent in sign or really felt like part of the Deaf community. I’m fascinated by both, and have always enjoyed taking sign classes. But once the class ends, I find it hard to maintain what I have learned.  I know now that I need to make more of an effort to get out to Deaf events and practice signing with others.  I’m making some progress on this front, but it’s hard to find time when both my wife and I work, my wife is in school, and we have two young kids.

I sometimes wonder if I have missed out on something. I never really considered going to Gallaudet, but now I wish I had done at least a semester there. I also wonder if I could have done more to get involved in the Deaf community when I lived in the DC area.

I’m also finding that reading so much about hard of hearing/Deaf issues also makes me uncomfortably aware of how much of an impact my hearing loss has had on my life. I’ve gone through a lot of my life focusing on what I can do, and thinking of my hearing loss as just an inconvenience I have to deal with. It’s frustrating when interactions with strangers suddenly get awkward and impossible to understand, but in my day to day routine with familiar people I don’t think of my hearing loss all the time. It catches me off guard sometimes when I realize that some of my co-workers and friends make a special effort to speak more clearly and look at me when they are talking. I appreciate that they do this, but it also makes me realize that I’m in a little bit of denial about how much my hearing loss affects my daily interactions.

Looking back, I realize that my hearing probably affected my childhood and especially my teen years more than I realized. Although I usually had a few very close friends (some of whom I’m still very close with), I was also often lonely and unhappy. I usually blamed this unhappiness on other things such as the turmoil my family was going through and my father’s death when I was 12. Obviously those events played a big role in how I felt then and who I am today. But now I wonder how much of my social awkwardness at that age was just who I was (after all I was a kid who loved science fiction and comic books and hated sports), and how much was made worse by my hearing.  It’s kind of hard to fit in if you don’t know what people are talking about. I rarely felt that people were being deliberately mean or trying to leave me out, I just often had no idea of what was going on. Even now, my friends tell stories about high school and I find myself learning new things that I missed even though I was right there in the room.

I remember a long time ago (I think in college) a woman once asked me if I could wish for anything what would I wish for.  She wasn’t someone I knew very well, and it was just a casual conversation so I said something typical like that I could fly or go back in time. She looked surprised and said “I would think you would wish that you would have normal hearing.” I had no idea of how to reply to this. What I thought was a silly light hearted question had suddenly become a little depressing, uncomfortable, and even a little bit insulting. I don’t think I was able to convey clearly at the time that while I wouldn’t mind having normal hearing, I accepted a long time ago that it’s not going to happen.  Even now with all the improvements in hearing aids and implants, there’s still no real way to “fix” my hearing loss. I don’t really walk every day around thinking “Oh dear, if only I could have perfect hearing.” I have had a hearing loss as long as I can remember. It’s very frustrating sometimes, but it’s also kind of hard for me to picture my life without it.  Even today if the Blue Fairy came down in a shower of pixie dust and said she would grant me one wish, there’s a few other wishes that would come before my hearing.

There’s a good chance that my hearing will get worse in the future and I will no longer benefit from hearing aids.  If that happens, I will look into getting an implant. I may end up with better hearing than before. I may end up completely deaf. Either way I will make the best of it as I always have.