blind insight

The State of the Ear.

I am experiencing a vicious cycle, in which I am too busy to post, so I have too much to post about, which makes me procrastinate posting, which results in even more to post about, which . . . Oy.

Recapping briefly, the CI has successfully survived airport screening (no stopping, no metal-detector triggering, and no issues) and two plane flights. I spent both flights with the hearing aid off, and was delighted that I was able to hear and understand most of the pilot's announcements, as well as the flight attendants' drink queries. The CI also survived three days in New York, despite steam-room conditions and periodic downpours. I did, however, leave it in my hotel room when I went running in Central Park, as I was afraid to test the limits of its water-resistance.

The New York trip was fantastic. We saw lots of people we love, ate amazing food, and even wandered aimlessly a little - something we never seem to have on our purpose-driven NYC jaunts.

I noticed that it was a bit easier for me to understand my nephew's voice with the CI. But, on the other hand, when we were working him into a tizzy by chasing him around the hotel room, I had to periodically catch a glimpse of his face to make sure that the sounds I was hearing were happy giggles rather than meltdown shrieks. I also discovered that in really loud settings, such as an uber-hip New York restaurant or a gathering of my extended family, turning the sensitivity level way, way down brings the immediate conversation into dramatically sharper focus. Very cool.

Other than the fact that I'm finishing the second of two Supreme Court petitions that really should be granted (which is not to say that either has a snowball's chance in hell of BEING granted), that brings us to the present moment.

Today, I had my one-month mapping session. We began by repeating the standard hearing tests I did in February, when we initially determined that I was a CI candidate. At the time, my right-ear sentence recognition was at 4%; binaurally, I scored 43%. Today, with both hearing aid and CI on, I scored a whopping 91% (NINETY. ONE. PERCENT!!!!!!) on the sentence-recognition test. And 80% (EIGHTY FRIGGIN PERCENT) with just the CI. Yowza!

Even with background noise added into the mix,  with both ears in action, I correctly heard 78% of the sentences. My word- and phoneme-identification scores also increased exponentially over February.

In fact, particularly with the new map I received today, I am no longer noticing any real difference in my ability to hear and understand with just the CI versus just the hearing aid. The hearing aid sound still seems "better" to me - prettier, more familiar, less electronic - but even with the CI, voices are starting to sound more as I expect them to.

However, with both devices active, I still hear the sound in two different ways, simultaneously. Blending them will be my next big challenge, and simply takes lots of time and listening practice. My audiologist seems to think it will happen by the time my three-month appointment, and the next round of testing, comes up in August.

I now have four different programs in my CI. Program One is my "every day" program; Program Two is like One, but with a louder volume range, should I decide I need it (my guess is that I won't, but I wanted the option). Program Three is "Beam," which does not zap me into the Starship Enterprise, but does limit my sound-perception to an area very close to my microphones, and is for use in especially background-noisy settings. And Program Four is for the phone, with sensitivity and frequency adjustments to maximize the clarity of the telephone, and with the t-coil activated.

Yes, the phone! I hadn't used the phone with my right ear in (hm. I dunno. 25 years? ever?). But on Tuesday, I had a short phone conversation with Steve, using the CI. I didn't turn on the t-coil, but was still able to hear somewhat. As long as I had some general context, and he didn't mumble, I was able to follow a very simple conversation. (Except, of course, for the following exchange: Steve - "It's so awesome that you can hear on the phone." Me - "What?")

But this afternoon, I had a ten-minute phone conversation with my mom, about random stuff, using P-4, and I heard her almost flawlessly! I can't wait to try my cell phone, and my office phone, and to see if I can hear clients better with the CI than I can with my hearing aid (the prison phone systems are so terrible that I often can barely hear the guys when they call).

So, that's where things stand, one month out. My next update won't be until after July 8, when we return from a weeklong houseboat trip with Steve's family. Hopefully, it won't be entitled How My Cochlear Implant Landed In The Bottom Of Rainy Lake.

The whisper whisper of a butterfly.

When told that his Aunt Madeline was having an operation on her ear, so that she could hear more sounds, my not-quite-three-year-old nephew thought that was pretty neat. He asked his mommy whether I would be able to hear the whisper whisper of a butterfly, like Mr. Brown in his Dr. Seuss book. And just to make sure, he sent me this:

In truth, I can't quite hear the whisper whisper of a butterfly. But I can hear all kinds of new things, and they're starting to sound a little bit prettier every day.

I've managed to keep the CI on in a loud restaurant, throughout a chatty dinner party, during a triathlon, and while having lunch outside next to a busy street. I'm even starting to feel like things sound better with the CI on than without it, except in certain super-background-noisy situations. Although I'm not sure that "better" is the right word, because voices, especially, still sound entirely computerized with the CI, so that what the CI hears still sounds like an electronic echo of the "normal" sounds.

Sometimes this is pretty entertaining. Particularly when I laugh, because it sounds like I have a laugh track chuckling along with me. Hopefully my brain will starting blending the hearing aid and CI sounds before I start thinking that other people are actually laughing at my jokes.

Wearing the CI during my triathlon on Sunday was a mixed experience. I didn't have any trouble getting it on, despite having to slide it under my pony-tailed hair and make sure it was secured under my bike helmet. But I do think my spatial sense is off with the CI, because it's much harder for me to hear directionally than it is with my hearing aid, and because many background sounds still seem so alien that I can't quickly guess at their sources. I'm sure this contributed to the minor collision I had on the bike exit (neither the other rider nor I were yet on our bikes, so it was more embarrassing and upsetting than dangerous and painful). I was also a bit distracted by the persistent whistling during my ride, which was no doubt the wind rippling past my ear. And when was coming into T2, I flipped the entire processor off my head as I pulled off my bike helmet, and only narrowly avoided seeing it crushed under someone's bike and running shoes by screaming DON'T RUN OVER THAT at the top of my lungs. I suppose it was no surprise that my time was three minutes slower than last year, although I felt so great through the race that I'm just a little disappointed about the results.

But, I digress. As I said above, I'm starting to like having the CI on more than having it off, and I'm not entirely sure why. Part of it may be that I can hear my own voice now, so that I no longer feel congested and fishbowl-submerged with just the CI on. More likely, it's a sign that even with the echo, the whistles, and the mishaps, my brain is really starting to adjust.

Theme Music.

You know how at the baseball game, each player has his own special theme music, which is played over the loudspeakers when he comes up in the batting order? After yesterday’s appointment, mine is Really Bad Techno. Which nevertheless marks significant progress.

On the way to my appointment yesterday, I turned off my hearing aid and concentrated on having a conversation with my mom using only the CI. I could tell that I was actually hearing some words, and was definitely hearing the inflections of each word and the spaces between them, although I couldn’t really understand what my mom was saying without looking at her or having some context.

As with my previous mapping sessions, we began the appointment by talking about what I was hearing and how I was hearing it, and then running through beep sequences to test my ability to tolerate volume and my need for adjustments at particular frequencies. The audiologist then gave me four new programs. These programs are much, much louder than the loudest program I had before. They also have the added "sensitivity" feature, which allows me to adjust how far away from me the CI picks up sound. Some of the programs require me to do this manually, with the touch of a button, and others have an automatic sensitivity adjustment (which I can manually override). I haven’t played around with this feature too much yet, but I intend to do so at the climbing gym (and, afterward, at the bar), where the background noise can be overwhelming.

While I am hearing a great deal more now, it still sounds awful. The background beeps and whistles continue to fade into the background, but my brain isn’t totally ignoring them. This seems to be particularly persistent with computer noises. Every single stroke on the keyboard or movement of the mouse results in a loud, annoying, beep-beep-beep-whistle-whistle. Given that I spend almost my entire day banging away at the keyboard, this is incredibly annoying.

Still, more and more, I’m hearing words and "important" sounds. I could hear, though not understand, the elevator announcing my floor this morning. I could hear, distinguish, and sometimes understand, almost every sentence Steve tested me with last night, in a controlled exercise. And I can hear myself speaking in words now, not just beeps and whistles.

While I’m in the office, I have NPR streaming in the background. Last week, I could hear the rises and falls of the radio voices, and could often tell when the program shifted from talking to a musical interlude. Today, I can pick out a great many words and phrases: strategy, management, government, Iraq, understood, larger amounts, city, dollars, plight, agency, emergency, just a few days before, on the streets, in the capital city, what was important, see something, in a Cabinet meeting, serious concerns, from beginning to end . . . the list goes on. I can’t really tell what the reporters are talking about, but it’s pretty exciting when I realize that I’m hearing Actual Words, however electronic they may sound.

When I have both the CI and my hearing aid on, I can hear myself and others both "normally" and electronically. This is very, very strange and distracting. It’s as though I’m hearing speech almost-simultaneously in two distinct places - both at its source (for example, in the vicinity of the speaker’s mouth), and directly on the right side of my head, where the CI is. The former sounds like I’m used to it sounding, and the latter sounds like the robotic voice from an early 80s teen-computer-hacker flick. Plus, there’s a bit of a whistling "tail" on many final-word-sounds, particularly esses. The net result, factoring in the omnipresent background beeps and whistles, is Bad Techno.

There are a few scattered moments when things seem to sound the way I want and expect them to. These moments go a long way towards relieving my frustration and fear, and convincing me that sooner, rather than later, I’ll be hearing more and better than I ever have before, even if it mostly sucks right now. Over the next two weeks, until my next mapping session on June 29, I’ll be focusing on integrating the hearing-aid sound and the CI sound, and hearing the latter as something less electronic and roboto-genous. Hopefully, soon, it will be less Bad Techno and more Good Bluegrass.

Baby steps.

I have little to report. For nearly a week, I've been wearing the CI at the top of the volume range in my loudest program. Reaching that level by my next appointment was the primary goal my audiologist gave me. That appointment is June 13, so I suppose this counts as overachieving. I'm also cruising through the low-level exercises, most of which simply have me recognizing syllables and word breaks.

I've been trying to keep my hearing aid off while I'm working, and I can usually hear when someone knocks on my office door or when the phone rings. I haven't had much time to watch TV this week, but when I have turned on the television, I've been turning off my hearing aid, and trying to connect the sounds i'm hearing to the words in the closed captions. I think I'm soooort of starting to hear some more distinct sounds, but they still mostly sound like collections of beeps and whistles.

Last night, we did an exercise in which Steve read a paragraph out loud to me while I followed along on a piece of paper. My job was to point to each word as he said it. That was a piece of cake, and I thought I might be actually hearing some of the words themselves, rather than just their syllables and inflections. After we finished two such paragraphs, I asked Steve to randomly say some of the words from the paragraph, out of order and context. This was a more interesting - and challenging - task. I correctly identified about 80 % of the words, mostly on the first try.

Most of the once-overwhelming background noises, such as the swamp cooler just outside my home office door, are no longer drowning out all other sounds with their persistent whistles. And yet, I'm still hearing some sort of whistling or beeping almost constantly, and I still (STILL!) have unrelenting tinnitus when the implant is off. It's driving me nuts. At Wednesday night's climbing session, it took me several routes on toprope before I could get into enough of a rhythm to ignore the whistling and ringing and focus my mind enough to lead. On Thursday, the tinnitus had me on the verge of tears as I struggled to get my breathing under control and to settle my stroke during my first real open-water swim of the season (somehow always a bit of a panic-inducing moment for me, even after ten years of tri-training). On the other hand, the ear-noise is only mildly distracting when I'm cycling or running. I need this to settle down soon, because it's crazy-making.

I still have to turn the implant off to hear well (with my other ear) when I'm talking on the phone. Crowded situations are nearly impossible, since the CI simply floods my head with whistles and beeps, and my hearing aid can't sort out the crowd noise from the stuff I actually want to hear.

And yet, it hasn't even been two weeks yet since the implant was activated, and I have made considerable progress. I hope that on Tuesday morning, I'll get another big bump in the volume range, and perhaps some tweaking of the map to help me start hearing things more normally.

A glimmer.

Today was incrementally better than yesterday. I tried hard to separate out distinct sounds throughout the day, with a bit of success. At Dawn's suggestion, I turned the CI up louder, then gradually increased the volume as the day went on. Surprisingly enough, by the end of the day, I had the processor set at the highest volume setting on the loudest program, and things sounded noticeably better than they did yesterday.

Don't get me wrong, I'm still hearing mostly whistles and beeps, but the persistent "white-noise" whistles and beeps are starting to fade into the background, and the sounds I might actually want to hear are starting to emerge from the electronic mists. Nothing sounds like I want or expect it to, but many more sounds are distinguishing themselves within the droid-babble.

The most tangible sign of improvement came tonight, when Steve and I finally did some of the exercises my audiologist assigned me. The first task required me to listen to Steve say two words, and then to tell him whether they were the same word repeated, or two different words. No lip-reading or hearing-aid use allowed!

Last week, when I tried to do this exercise, it left me in tears. Even if Steve tapped me before he said each word and paused between the pairs, I couldn't even tell if he was speaking, let alone that he was saying two separate words, so trying to compare them seemed an impossible feat. But tonight, I scored 100%. I couldn't tell you what any of the words actually was, but in every case I could hear the two words as distinct sets of sounds, and could tell whether those sounds were identical or different.

The next exercise was similar, but my job was to determine which of two words had fewer syllables. Again, I got them all. And again, I could hear each word as a very distinct collection of sounds, easily identifying the shorter word in each pair.

Overachiever that I am, I wanted to keep going. But the next set of exercises seems beyond my current capabilities, so I asked Steve to sing a song that I would know, and I would try to guess what it was. We did this with three different songs, none of which had anything to do with the other in theme, genre, artist, or era, and I got them all.  By the last one, I thought I might even be hearing an actual word or two.

NOW this is starting to get exciting. . . .

Ditto.

No change. Very frustrated. Just sent the following to my (wonderful) audiologist, in the hopes of some reassurance. I'll let you know what she tells me:

Hi ______.

Well, the first several days post-activation have been really hard. I'm still hearing nothing but constant beeps and whistles. I haven't been able to do any of the [listening] exercises because I'm getting so many other sounds that I can't tell which beeps or whistles are the ones Steve is saying. Sitting in my office now, with my hearing aid off and my CI in the middle range of P2, I'm hearing the computer-related beeps, but also a constant, steady, loud and distracting whistle, which must be the air-conditioner or something. I also heard this all day on Friday, but am also hearing a similar constant whistle in other settings. It reminds me of hearing-aid feedback, and if my hearing aid was doing this kind of steady, constant whistling, I'd know something was very wrong.

I have to turn the CI off to hear a phone conversation with my left ear, or to have any kind of conversation with more than one person, or in any kind of crowded/loud situation, because otherwise the beeps and whistles drown out everything else. I also have constant, uninterrupted, unflagging tinnitus in my right ear. I don't know for sure if it's happening with the implant on, but the second I turn the implant off, it's there and it never goes away. I've slept terribly since activation because the tinnitus keeps waking me up all night long, and it's very distracting.

Please tell me this is normal and that it gets better fairly soon. Right now, I'm pretty miserable, and getting more and more frustrated every day. I haven't noticed any change at all since Thursday.

Sorry to be such a downer!

- Madeline

UPDATE: The audiologist says it's all normal. Frustrating, agonizing, but normal. She promises that it will get better, although perhaps not super-fast. Sigh.

More of the same.

As Day 3 of The World of Electronic Hearing winds down, my head is reeling from the continued onslaught of whistlybeepystuff. I’ve had a few tiny, almost imperceptible breakthroughs of hearing Something Real, and I’ve already moved into a significantly louder program than I started with on Wednesday. Mostly, though, it’s still All R2 All The Time.

Today was my first day back in the office since Activation Day. I spent a lot of time explaining to my colleagues why it sucks right now, but hopefully will suck less soon, and will eventually not suck. The rest of my day has been spent on the computer, listening to the now-familiar mouse and keyboard beeping, as well as an incessant whistling that is probably the air-conditioning and will hopefully recede into the background SOON.

I’m also hearing some things that astound me. For example, if I rub my hand up and down my bare arm, I hear a corresponding whistle. If I slide my hand over my desk, I hear a similar, but differently pitched whistle. Yet if I staple something, I can’t really hear any particular sound that corresponds to the stapler closing and reopening. I’m not sure why I’m getting so many of these tiny sounds that I’ve never even realized existed before, but not more obvious, known sounds. It may be because I expect the known sounds to sound familiar, so I’m not recognizing them yet.

Yesterday, the audiologist gave me a stack of listening exercises, which Steve and I are supposed to work through for about a half-hour a night. These are supposed to help me start sorting out and identifying what I’m hearing with the implant. I was too exhausted and overwhelmed to give them a try last night, but hopefully tonight we’ll run through one or two. I expect to be rather relaxed, because we’ll be coming from a cocktail party I’m co-hosting after work, but possibly also very tired of listening. I’m awaiting with quite a bit of trepidation this first venture into large-gathering-small-space hearing with the CI.

Lest you disbelieve

. . . that I really am recovered from the surgery, I  thought I'd show you what I was doing this weekend, less than two weeks post-op. Hard to believe that just the week before, I was huddled on the couch bawling in pain.

And also, a little of this:

Wonder Twin Powers . . .

Activate!

Hee. I've been waiting for months to use that post title. Alas, I'm feeling less like the Bionic Woman (or Jayna, for that matter), and more like C3PO, bombarded by the incessant beeping and whistling of R2D2. Really, if you played some of the little droid's scenes from any of the original Star Wars movies, you'd have a pretty good sense of what it sounds like in my head right now.

But I am definitely hearing something! When the audiologist initially handed me the processor and turned on the device, I almost jumped out of my skin at the loudness (and ugliness) of the first few beeps. Then she ran through sets of beeps at different pitches and volumes, and I was able to tell with almost 100% accuracy how many beeps were in each sequence.

She disconnected the processor from her computer, and turned it on for real. And I heard R2D2. Loud, annoying, incomprehensible R2D2. Nothing that sounded like anything familiar or pleasant, and nothing that seemed to correspond to the movement of lips or to other identifiable sound sources.

My audiologist assured me that this is normal and predictable, and she set about tweaking the "map," the programming inside my sound processor, to make things more tolerable and comprehensible. None of the changes made things sound not-whistly-beepy, but her adjustments brought the volume and pitch to more comfortable levels. After a little while, she and Steve stopped talking or moving, and I realized that the sounds I was hearing DID, in fact, correspond to talking, computer-using, paper-rustling, and other identifiable sources. Not that I could identify any particular source, but this was a bit of a breakthrough.

Next, the audiologist brought out some noisy toys. She shook a ring of bells, which caused me to jump and grab my ear. A tambourine and a single bell were only slightly less obnoxious-sounding. The audiologist explained that I haven't been able to hear with the high-pitch-sensing nerves in my cochlea for over 25 years, so they're kind of freaking out at the stimulation.

Ultimately, she arrived at an initial map and volume setting. She asked me to try to get comfortable with the volume at its maximum level, and explained that when I come back (this afternoon), we should be able to do some significant refinements to the map and bump up the volume range quite a bit. Then, after demonstrating all the nifty features of my processor and its accessories, she sent us home.

In the car, I tried turning my left-ear hearing aid off and listening with just the CI. Mostly, I heard R2D2. I couldn't hear Steve talking at all, couldn't hear the radio, couldn't hear anything that sounded like anything. But all of a sudden, I realized I was hearing something distinct - the rhythmic clicking of the turn signal! This discovery caused both of us to grin and giggle.

I kept the CI on for the rest of the day. I had a bit more work to do at home, and quickly discovered that I was hearing computer sounds fairly distinctly. Many of these, I'd either never heard before, or I'm hearing at a bizarrely amplified level. For example, each click of my mouse makes a small "beep," as does every tap of the keyboard.

Later, at the climbing gym, I realized that I could hear the sound of water running, and that while I couldn't hear music as such, I could tell when it changed from vocals to instrumental solo. At home, Steve called the land line from his cell phone, and I could hear the phone ringing. Or, well, I could hear a long, loud, steady whistle that didn't sound like anything else I'd heard with the CI so far.

This morning, when I turned on the device (while sitting here at my desk), it brought me back to the land of whistles and beeps. I was hearing the computer again, but there also seemed to be some kind of steady whistling in the background. When Steve came in to say goodbye, I realized it had been the shower running across the hall.

To actually function, I need my left-ear hearing aid. I'm still hearing normally with the hearing aid, and having the CI on along with it isn't too distracting or annoying right now. So far, I've been trying to turn my hearing aid off and to focus on what the CI is doing when I'm in a situation where I really don't need to hear anything in particular. I'm already noticing that having the aid and the CI together sounds better, or louder, anyway, than just the hearing aid (and MUCH better than just the CI, at least for now).

Beeps, whistles, water, mouse, phone. Not bad for 12 hours of bionicness.