Sunday, November 14, 2010

Map Time

Another mapping appointment for the CI (cochlear implant) came up fast. This was for the one month map of the new CI, "Repeat," and 2-year map of the first CI, "Pete". (The next map will be the 3-month map.) A map is the mesurement of sounds that are comfortable to you and what is too soft and too loud. You can increase or decrease volume and sensitivity when you want for certain situations. This is how I look at the map: On the volume control, the default level (the comfortable level) is at number 6. I can lower the volume (softer levels) and increase the volume (louder levels). The map is always adjusted to your comfort level. Sometimes that means that as time goes on, the brain gets used to the volume and soon the higher volumes are your "comfort" level. Having mapping appointments help you keep the comfort level in the middle of the volume control (in this case, number 6).

I love how I can now wear matching processors. :) Since I can get two processors, one pair (the Freedom) is a back-up while the other pair is the one I wear almost daily. If I had both ears done at the same time, I'd have gotten four processors right away and had two for a backup. I don't know what happens when an upgrade (to a new model) is made-does the recipient get one or two processors with the upgrade?

The map for the first CI, Pete, wasn't changed except that I had programs 2 and 3 switched around. The brain, over the past two years, has found it's "happy spot"-it does't need adjustments to volume, but that doesn't mean that will always remain that way. (There are four different programs for both the Freedom and N5 processors.) Before the last map, Pete had for each program):

P2-Everyday with T-coil (so I didn't have to monkey with the switch fo turn on the T-coil, it was much easier to switch programs. You only have so many seconds to answer the phone....)
P3-Focus with beam

Then P2 was changed to the "Noise" feature and it was like "Focus" but background noise is compressed with the zoom feature. (More on that later.)

Then I wanted P2 and P3 switched so that I could go from "focus" to "noise" (kind of like zoom to super-zoom) in each step).

So now it's like this (N5):

P2-Focus with Beam
P3-Noise with Zoom

For the Freedom processor:

P2-Noise (no zoom because the Freedom doesn't have zoom-see below)
P3-Focus with Beam

(Keep in mind that the Freedom does not have the Zoom technology, only the beam feature. (Cochlear has added "zoom" to it's SmartSound technology. The N5 is the only one with this feature. The Freedom has the beam feature, though. The new "zoom" feature can zero in on the speaker directly in front of you and somehow lesson the background noise even more than Beam can. This is why I wanted my programs to be set up that way-I could go from "zoom" to "super-zoom.") The second CI (the N5), Repeat, the right ear, has this

P2-Everyday with more volume
P3-Noise with ZOOM


With the Freedom, P3 is Focus with Beam

After the map was done, I had to be tested to see how "Repeat" was doing, hearing-wise. My test scores were good for a "one-month-0ld". :) I had 50% word discrimination and about 90 something percent together. I had sentence tests and they seemed to be more challenging than usual. I don't know if the standards were raised to see how a patient can really hear in extreme situations, but take my word for it, it was HARD. It seemed to start off easy. I could hear the sentence in a noisy background, then after each sentence (and there were different male and female voices) it seemed like the background noise got louder and LOUDER. Whew. I had to shake my head a few times signaling that I didn't "get" it. Now, that's more "realistic". I am not good at all in noise. I can be in a noisy restaurant/bar and just sit there, not being a part of anything because it's difficult to socialize and be sociable at the same time. It's frustrating.

I will always identify myself as a deaf person. I have lived with hearing loss all my life and it's so much a part of my life. I still struggle to hear, especially, like I said before, in noisy places. I can talk on the phone, but not all phones work for me. Cellphones are the worst for me. Certain people, like my mother, are easier to hear on the phone. Maybe it's because I'm familiar with her voice or maybe she is just attuned to accommodating me. The CIs have helped me hear at levels I don't remember hearing or haven't heard in a long time. It's amazing how, when your hearing deteriorates, you don't notice that so much, at least with me. You just keep going with what you have.

But at the same token, where my vision loss is concerned, I remember more of what I used to be able to see. The stars. Seeing at night. (Now it's just dark. People are dark moving shadows. If there's a light, it offers just a glow around it and I can see things in that glow, but farther out, it's just dark shadows.)

I have a "space" problem now. When I'm in hallways, I feel like I"m taking too much space and need to stay either as close to one side as possible, almost shoulder-touching the wall next to me (I tend to knock things that are hanging on the wall this way.) or if the hallway is very narrow, I'll want to stay in the middle as much as possible-it's like I have this claustrophobic problem.

I'm forever walking into things below my hip-a chair, a bike, the dog, a "wet floor" sign in stores. That's when the cane can come in handy so I don't do that. I can put my hand out in front of me and see my hand, but my arm disappears into this invisible void. I know it's there, but I can't see it. Imagine a piece of paper with a drawing of an arm. The hand is smack in the middle but someone erased the arm. It's just not there. The peripheral vision is gone.

The only thing I can say is that hearing loss was always with me and I'm used to the daily struggles of hearing, listening. (Yes, I'm hearing a lot more with the CIs than I ever did with hearing aids, but like the hearing aids, when I take off the processors, I'm in a soundless world.) This vision loss came upon me later in life, so I notice the changes more. I have a lot of "good vision" memory (optical memory, if you will) that it's more of a grieving process for me than hearing loss is.

I keep thinking to myself, if I didn't have RP (retinitis pigmentosa), would I still have gotten CIs? I can't answer that. Two years ago, I still had one working ear before implanting the other ear that didn't pick up speech. (I didn't realize how bad my hearing got, but I worked with it because that's what I was used to.) If the time came when that ear, the good ear, didn't benefit from the hearing aid, would I have gotten a CI? Maybe. Then I would be without the good ear, the "back up" ear. I'd be in total silence.

Most people I have talked with about CIs have gotten them after both ears didn't benefit from the hearing aid. They were used to hearing something. Once no speech was able to be picked up by the hearing aid, it was devastating for them. So, yes, maybe I would have gone that route eventually.

I am not sorry I got the CIs when I did. I did it because I wanted to hear more to make up for my dwindling vision. I'm hearing things so much better. Most of all, I'm hearing speech in my darkening world. I'm not totally out of touch with the world in the dark with my CIs on.


At Sat Dec 11, 10:26:00 PM , Blogger Becky said...

I'm telling you...write the book on this! You have such a way with words, and the ability to explain all these details feels almost like I'm experiencing it all for myself.

At Mon Apr 04, 04:30:00 AM , Blogger Peter Bryenton said...

Thank you for sharing your personal story here Shari. I know that one of my students has already found your blog helpful.

Peter Bryenton
IT Teacher
New College Worcester

At Sat Aug 20, 03:24:00 PM , Blogger Shari said...

Actually, Becky, I'm working on a book. :) It's not a memoir, but it will be fiction and a lot of my personal experiences will be in it. :)

Peter, I'm glad I can help. Usher syndrome is a rare genetic disease and people need to read about it. It's a life full of adjustments, living in a world that becomes dimmer, narrower, yet we are in-between those who have good vision and the blind, those who are hearing and deaf. And people don't understand it and the more I reach out to, then the more I'm happy I did this blog. :)


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