This is going to be a challenging topic for me to write about. I’m going to try to write about this in a way that hearing people can hopefully understand what I’m trying to say. What’s so difficult about that, you ask? Well, that means I have to think like a hearing person does and I have to take into account what I think their experiences are with sounds How can I do that 100% successfully when I can’t hear? I can’t, but I will try my best. 🙂

I cannot describe sounds with words like hearing people can. I simply can’t. I don’t fully understand it when someone says something sounds beautiful, relaxing, etc. I understand that the sound itself is associated with those emotions. However, I don’t understand what makes a sound sound beautiful. I was listening to music earlier and I realized that I have never used the word “beautiful’ to describe a sound. Then I started thinking a bit more about what I use to describe sounds. I think music is a good example to show how limited my descriptive words are. I oftentimes use youtube to listen to music. Why? Because I can watch the music video too and I can read other people’s comments on that particular song. How do I usually describe music when someone asks me? This is usually the list that I choose from.
“I like it.”
“I don’t like it.”
“I like that beat.”
“That’s too boring.”
Yeah, that’s it. Notice it all has to do with if I like it or not. Nothing has to do with how the sound sounds itself.

If someone asks me how to describe a certain sound. I automatically want to start gesturing or use an object to describe it (which I have learned hearing people don’t understand when I start gesturing to illustrate a sound. I usually have a 50/50 chance of a deaf person understanding what I mean). If I’m asked to describe a sound without gestures or visual images…I will usually describe it by the pattern of the sound itself (not the volume, not the pitch, etc.).

I actually tried a mini project once. I wanted to figure out a way that I could describe sounds without words that hearing people could understand also. As a deaf person, I’m naturally more tuned into tangible and visual stuff. Sounds are such an abstract thing to me. Anyways, I was hanging out somewhere once and I had some time to kill before going to a meeting. I decided to just focus on a piece of paper and try to kind of draw abstract shapes to represent what I was hearing at that time. While the completed project made perfect sense to me….I decided to throw that piece of paper away. I didn’t think it would make sense to hearing people and wasn’t sure if it would even make sense to other deaf people. I’m sure there are artists out there who have explored this in more depth and detail than I have…I just need to find them! 😉

I’ve also wondered how much of how we describe sound has been “forced” on us and how much of it is nature. I was thinking about a paper I read a few years ago that made me wonder about this. I read a paper that explained how humans are NOT naturally clean and cleanliness is a learned behavior. I wonder if this is similar with certain sounds. If we’re “taught” that certain sounds should be pleasant and others shouldn’t be or if it’s a natural thing.

The beach/ocean is an example.

I was 14 years old the first time I ever saw the ocean and I wasn’t wearing my hearing aids during that period of time. I didn’t grow up hearing the ocean. I was always under the impression that the sound of ocean waves hitting the shore was such a relaxing and pleasant sound. I mean, I would see it on those relaxation CDs on TV commercials or even alarm clocks (those kind with nature sounds to block out other noises so that it makes it easier to fall asleep). It would always come up when people would talk about relaxing places.

When I was 20 (wow, 5 years ago…man, time flies), I had a summer rotation in South Carolina. I was about 10 minutes from the beach and would go there quite often. The beach is not an ideal place for hearing aids (sand, moisture, water, etc). I can’t swim with hearing aids and am not going to leave something that costs thousands of dollars in my beach bag by itself while I’m in the ocean swmming. There were times where I did wear my hearing aids when I would go for walks on the beach in the mornings. Imagine my surprise when I first heard the sound of waves hitting the shore
It…was…not…a….relaxing, soothing, or calming…sound

It was loud, distracting, and annoying. While it was cool that I could hear something I never thought I would be able to, I was surprised that this was what so many people claimed to be a relaxing sort of sound. I kept trying and trying to figure out what made this a supposedly relaxing sound? My opinion is that it’s either a sound that drowns out other noises OR it’s a sound that people associate with the beauty of the ocean/beach fun. It’s the reverse for me. It’s a sound that drowns out the beauty that I see with my eyes (I get so distracted that I miss out on other things) AND I do not associate sounds with things.

Eventually I got used to it and started enjoying the fact that the sound changed with the intensity of the waves.

A more recent situation was in L.A. last fall when I went there for a conference. I think that was the first time that I truly enjoyed the sound of the ocean waves. I finally realized it was probably more about the rhythm of the sound itself than anything else (or maybe not?). I started to better understand how people could get lost in the rhythm of the waves hitting the shore.

Some sounds that make me smile are sounds that annoy hearing people and vice versa. Is that because I hear them differently, my brain processes the sounds differently, or is it because it’s a learned behavior that I never learned?

Darwin and Abraham

Happy 200th Birthday, Darwin!

Spoken like a true genetic nerd, eh?

It’s also Abraham Lincoln’s 200th birthday. Darwin and Abraham both share the same birthday. How about that?!

I Will Miss My Residual Hearing

As I explained in my last post, I don’t have a lot of residual hearing. One may think that it’s not a big deal that I’ll lose it whenever I get a CI.

It is a big deal to me. It always has been. My small window of residual hearing isn’t much, but it’s something that’s mine. It does gives me the ability to use hearing aids.

I will have no residual hearing in my left ear after March 5th. So weird.

What Can I Hear?

Everyone who is hard-of-hearing or deaf all have different amounts of residual hearing. It’s not a black and white situation. It’s similar to people who have to wear glasses or contact lenses. Some people need a stronger Rx for glasses/contact lenses than others, some are nearsighted, some are farsighted, some just need reading glasses, some have night blindness, etc.

So, what can I hear without my hearing aids? Residual hearing is the amount of hearing a person has. The majority of deaf people have some residual hearing even though they can’t hear any environmental sounds.

I have a very small window of residual hearing. As luck would have it the amount of residual hearing that I do have is in a frequency area that doesn’t happen often in the real world. 😉

Here’s a general audiogram. I am not an expert at reading audiograms, I’ve kind of taught myself how to read one. This particular audiogram shows what frequencies/dB environmental sounds and spoken language occur at.

I have very little residual hearing in the low frequency range (on the left) at about 90/95 dB and then it takes a very quick nose dive off the chart. I have no residual hearing in the high frequency range (past 1000-2000 Hz). Without my hearing aids I cannot hear any of the things that are shown on this audiogram.

The only place I can hear things is at the audiologist’s office because they have machines that can create sounds at the exact dB and frequency levels that I have residual hearing at. For me to be able to hear naturally occurring noises outside audiologist offices, the noise has to occur at just the right dB level and just the right frequency. This very rarely happens. I have only heard 2 different things a total of 5 times in my whole life (that I can remember). It completely confused me all 5 times to actually hear something without my hearing aids. I was maybe 13 or 14 years old the first time I heard something without my hearing aids and it freaked me out the first couple of times.

The 2 things I can hear without hearing aids:
–I have to have the correct type of shaving cream can and the correct type of bathtub to hear this particular noise. If I happen to accidentally drop that shaving cream can at exactly the right angle from exactly the right height, I can hear it. I cannot recreate that sound. I’ve tried dropping it at different angles, different speeds, and different heights. I cannot hear it 99.999% of the time. It just goes to show how it has to be just the exact right frequency and dB level for me to hear it. I have only heard this 3 times in my whole life.
–Firecrackers. I can BARELY hear them if I’m few feet from them (I usually don’t stand that close to them, but for some reason I’ve found myself in those 4th of July situations where people will set them off nearby). It sounds like a whisper to me and even then I don’t hear the whole thing going off. It’s usually just the first few individual crackers that are the closest to me. I’ve only heard this twice in my life.

That’s it.

I cannot hear a train or subway going right by me.

I cannot hear airplanes taking off even if I’m right by them. As a kid before 9/11 my dad used to take me out to the airport and we would lay on the car hood at the very end of runways (or as close as we could get, after all there were fences to keep people like us safe from getting run over by airplanes). We would just watch airplanes taking off right above our head (fun times).

I cannot hear gunfire.

I always find it amusing that I can hear a shaving cream can hitting a bathtub, but cannot hear gunfire.

Deaf People and Cameras

I always find it interesting how my deaf friends (and myself included) have a tendency to take more pictures and videos than hearing people do. I guess that’s just because we’re more visual by nature?

It’s more “normal” for me to start snapping random pictures at a party/get together/dinner when it’s with a group of deaf people. It’s almost completely the opposite when it’s with a group of hearing people. Half of the time hearing people will give me odd looks when I pull out my camera at an everyday event (e.g. dinner). Of course, I’m generalizing here…but it seems like hearing people reserve their camera for more special events…whereas deaf people tend to just take pictures of EVERYTHING. Needless to say this means we end up with boxes and boxes of pictures.

Announce It or Keep It On The Down Low?

Brace yourself for oodles of cochlear implant related posts now that surgery has been scheduled.

One thing that I’ve been trying to decide is if I should tell people that I’m going to get a cochlear implant? If so, who all do I tell?

I first started considering a CI 5 years ago but didn’t seriously consider it until about a year ago. When I first started seriously considering it, my natural instinct was to just not tell anyone and just go and do it. Why? I didn’t want it to turn into a bigger deal than it really had to be (although it is a big deal to me), I didn’t want people to think I was getting a CI for the wrong reasons, etc.

I quickly learned that this would be a mistake. After thinking about it a while I realized that it was important to be open about it. My time in NY taught me that it makes a difference when I openly talk about what I can hear with my hearing aids and what I can’t. It makes others feel comfortable to ask questions and improves communication. I also learned from other people’s questions and comments. Other people’s thoughts made me consider things I would never have thought of before.

I decided blogging would be the best option. I didn’t want to send out a mass e-mail updating people every month. To me, that’s kind of forcing it onto others when others may not even be interested…they may not even care. Blogging gives me the chance to tell people that if they’re interested in learning more they can follow my blog. It’s then up to them if they want to read it or not. If they want to follow my blog. Great. If they don’t want to follow my blog. Great.

I don’t mind answering questions at all, but there are some specific questions that will come up at least 100 times. Instead of answering the same question 100 times, it’s a bit easier to blog about it once and be done with it. Once again, I don’t mind answering questions…so don’t let that stop you! 🙂

Another reason why I’m blogging about this is because one of the biggest impacts on my decision making process was reading other people’s experiences with cochlear implants. The media and medicine community tend to sugarcoat things sometimes, so it’s been refreshing to read people’s daily experiences with a cochlear implant (both good and bad). I plan on blogging both about my successes and frustrations. Of course, it’ll probably be more frustrations than successes at first. It’s important to me that people understand that CIs requires time, commitment, and work…and even then….I will probably plateau out after a year. Getting a CI is a lot more complicated than people realize in terms of how it may affect how I view my deafness.

For someone with my background (profoundly deaf since day 1, adult, etc.), I will not benefit from a CI as much as other people will. Those who are implanted by age 3 or have progressive hearing loss will benefit from a CI much more than I will.

I’m also guilty of complaining about myths and misconceptions that people have about cochlear implants and deafness in general. I realized that one thing I could do to change this is to blog about my own personal experiences and hopefully disprove some myths/misconceptions.

Now, the question is…who all do I tell about the fact that surgery has been set? It may be a bit premature because anything could happen between now and March 5th. However, it would be good to make people aware that things do happen that can prevent a person from receiving a CI or change their minds. I have already told my deaf friends, parents, and whoever currently reads my blog. There are a few additional people I plan on telling soon. I have been trying to decide if I should mention this to my colleagues or not.

It seems odd to just send out a random mass e-mail to everyone, some who I haven’t talked to since graduation. I don’t want them to get the wrong idea. However, genetic counselors make up a small community and it’s very possible that I will bump into former classmates at conferences, etc. It’s impossible to avoid questions when I’m wearing my hair up and they see the CI (it’s more noticeable than hearing aids). I don’t want people to feel like they can’t ask questions, because it could turn into an awkward situation (kind of like a pink elephant in the room). It’s also possible that this may affect how they communicate with me. If I do much better with a cochlear implant than I do with my hearing aids, then I may be able to lipread better. Or what I gain from a CI may be subtle enough that others may not notice a difference but could make a big difference to me. In additional, there’s always the possibility of having complications with a CI and people may find it even more difficult to communicate with me than it was before I got a CI (unlikely, but not impossible).

Also, this group of people are within the medicine field. It’s very possible that they will interact with someone who has a hearing loss as a patient. That person may have a cochlear implant too or may be considering one.

I am leaning towards NOT sending out a mass e-mail about my CI surgery and keeping it on the down low. I just don’t want to make it a bigger deal than it really has to be. However, I know people will eventually find out from others and I want them to have the correct information. So…what do I do?!