An Amazing Year of Sound

It’s been a year since my initial CI activation, the day I was first given my external processors and my brain was introduced to sound through my cochlear implants.

My Activation Day was August 20, 2008, and it was crazy-hectic because it also happened to be the day my daughter was registering for her freshman year of high school.  This year, she was scheduled to register for sophomore year on August 20 again.  Even though she was currently living at her dad’s for the summer, and had told us she wanted to make a permanent move to his house so she could go to school out there, I still hoped she’d change her mind.  So I told Dave to make the appointment for my one-year mapping on the 21st and to keep the 20th free, just in case.  I didn’t want to chance another repeat of trying to fit too many things into one day.

Paige came home the weekend of August 14, for her first visit all summer.  We celebrated her 15th birthday and went to the movies.  And she gave me a gift:  she asked to come back home.  Of course, we welcomed her with open arms, and finally the house feels normal again.  To say that I am thrilled is putting it mildly!

So we all left bright and early Friday morning for my one year mapping.  It had been six months since my last one in February.  A mapping, by the way, is done with an audiologist who is trained to program cochlear implants.  Each of my processors is hooked up to a computer and programmed based on my responses to the sound that I hear.  Each of my implants has 16 electrodes that can be manipulated with this software.

I told my audiologist, Jill, that things have actually been sounding too loud the past couple of months. I’ve noticed I’ll start the day with the volume around 10:00 and some days never make it louder; other days I might go up to the 11:00 mark but very rarely 12:00. If I go up to 12:00, everything sounds very loud and like it’s echoing.  (Usually the CIs are programmed with the volume wheel at 12:00, which is like “0”.)

Based on that, we started off by setting the sound levels again.  To do this, I listen as tones are sent to my ear through the CI and I let Jill know when the sound is loud but comfortable. On the left side, which is my better ear that has been deaf the shortest amount of time, I had her leave most of them the same; I think there was one or two that she turned down a bit.

On the right side, I actually needed more volume for the first 3 tones I listened to. This makes me wonder if maybe the issue was more that I needed more volume on the right…and I had been turning the left side down to make things sound more even. The right ear is the one that’s been deaf far longer, so it has more work to do than the left.

However, the last 2 or 3 tones on the right side were super high pitched and just made me dizzy. I could hear them, but they weren’t loud — they just really made my eyes feel like they were spinning around in my head. So she turned those down until they didn’t make me dizzy any more but I could still hear them.

Once I got all the volume to where it was comfortable and clear at the 12:00 volume mark, we were set. It was time for the hearing tests.

Long-time readers of my blog know that I get really stressed out at hearing tests. I hold my breath, trying to hear the tones. I just can’t seem to go into the testing booth and be relaxed.

So this time, I tried to psyche myself out a bit. I decided to approach it as if it were a trial or study I was participating in. I mean, I always thought it would be cool to be part of a clinical trial, and I imagine it would consist of a lot of these tests. For whatever reason, I associate a trial or study with positive feelings. And it actually worked!  I was able to feel like I was helping someone out by doing this testing, and just relax and listen.  When we got to my worse ear, the right ear, I tried to just focus on the fact that it was so cool to actually be able to hear with that ear (for the past 15 or more years, they would test me and I’d never even respond on that side).

I still have a problem with super high tones just activating the noise compression program on my CIs, which makes the sound damp down when they are played, so for some of those I couldn’t give a response. I assume my hearing test with the tones was pretty much the same as always because Jill didn’t really mention those results.

After the tones, we did sentences. I sat in the booth and listened as sound came from the speakers (no headphones) and repeated what I heard.  I listened in quiet with both ears, then each ear by itself. The CD player was broken (YAY) so Jill just read the sentences to me, covering her mouth so I couldn’t lip read.  I got 100% with both ears, went from 96% to 100% with my (better) left ear, and from 60-something % to 80-something % with my right ear. (I should have written the numbers down…one of these days I’ll remember to do that.)

Then she added static. Now this is where I really don’t do well. With the man speaking sentences on the CD, it’s like his voice is the same tone and volume as the static, and it just gets lost for me. Last time, they had to turn the static down to get much of a response from me. With the original static level, using both ears at once, my Sentence in Noise result was 19%.

This time, I had it easier because it was Jill’s voice and not the man on the CD. The static was at the original, louder level though. I was VERY nervous because the static was so loud. She started speaking and it was just like her voice cut through the static and I could hear her just fine. I got 100% on the Sentence in Noise test, with both ears!  (They don’t test me in noise with the individual ears.)

As we walked from the booth to the mapping room, Jill said, “Could you hear the static?!”  I had to laugh, because it was so loud to me — but my results were so drastically different that I think she thought her static button was broken.  (I did notice that at one point she stopped the test, turned the static off and then on again.)

I’m not sure how I would have done if I’d had to listen to the man on the CD instead of Jill’s voice, so it might not be a fair comparison.  I have a feeling my results wouldn’t have been 100%, but I do think they would have been far better than 19%!

I had her program my backup processors with the new levels, and Dave asked if I should be switching between my regular processors and the backups.  Jill said it would be a good idea to switch them out periodically so if I end up having a problem with the backup processors, I can get them replaced while they’re still under warranty.  I like that plan, so I’m going to switch out my processors each month, just to give them all more of an equal workout.

I don’t need to go back now for another year, unless I have problems in the meantime.  It’s been a couple of days since my mapping and I’m really happy with the way things sound and the volume levels, which I’ve been able to wear at the 12:00 mark all day long.

My cochlear implants make each day a little miracle, and I will never take them for granted. It’s been an amazing year of sound!

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Close Encounters With Rear Window Captioning

Dave and I like gadgets and technology. Talk about DVRs and computers and whatnot, and our eyes light up. So when we first heard of rear window captioning, back in the late 90s, we were intrigued.

At that time, for us, a movie in a theater was heard through the finicky ALDs that most theaters have.  You know, the ones that look like stethoscopes with a dial hanging down on your chest, to adjust volume.  For people with so-so hearing, it means sticking the earbuds in your ears.  For me and Dave, it meant switching your hearing aid to t-coil, then trying to hold the earbud thingy up against the hearing aid microphone, on top of our ears, since the earmold was filling our ear canal.  Half the time the ALDs would work, other times we’d get nothing and give up.  So the idea of seeing captions on a nifty device that would reflect them for us really appealed to us!

Alas, no theaters in our immediate area had rear window captioning (RWC) so we kind of forgot about it.  Then open captioning (OC) came to town, to a local theater no less, and we were hooked.  This means that the captions are right on the movie screen, so everyone can see them (no special device needed).  The only catch is that you usually have to wait until a movie’s been out for a few weeks before it’s offered in an OC version and, at least in our local theater, it’s offered at the most for a weekend (Fri.-Sun.), one showing per day, most often a matinee.

For me and Dave, this is fine because our schedules are flexible and we can easily catch a matinee showing (plus, it’s cheaper).  We don’t mind waiting to see a movie so missing opening weekend is no big deal.  We’re also lucky to have a theater nearby that shows OC movies each weekend (we go to the local Marcus Theater).

This weekend, though, Paige is here celebrating her 15^th birthday.  We really wanted to take her to a movie but the only open captioned movie this weekend was one we weren’t interested in.  We couldn’t be flexible because we just had Saturday and Sunday to work with, so I pulled up Captionfish.com to see what other theaters in our area were offering.  We saw that Julie & Julia was playing in a theater about 20 miles away, with RWC.  Finally, a chance to try it out!

We got to the theater and my first impression was confusion.  The RWC viewing of Julie & Julia was listed first on the board where they have all the movies and showtimes listed, but instead of saying anything about captioning or hearing impaired, it was denoted with a !* in front of the movie name.  Pretty cryptic.

There were no signs announcing the availability of RWC, so if you didn’t already know about it, you’d be clueless.  We got our tickets, and Dave had to specifically ask where to get the devices.  We went from the window to the “Guest Services” area, where they rip your ticket and send you through to the theater, and asked for the devices.  Paige was going to get one as well, because she grew up with captions on the TV and actually prefers them now, but I think she got shy when she saw how conspicuous they were.  I asked her and she said she didn’t want to have to look from the device up to the screen.  Okay, no problem – Dave and I grabbed our big ole RWC devices and headed to the snack stand.

I realized right away that I couldn’t get a drink, because my device would be resting in the cup holder of my seat.  We got a small popcorn to share, got Paige her Twizzlers and pop, and headed off to find the theater.

As we walked in to a fairly full theater, we realized we were the only people with the RWC devices.  That surprised me a bit, to be honest.  I had read somewhere that sitting in the center of the theater offered better placement of the captions, so we found some center seats and got settled.  I tried to take pictures of our RWC contraptions with my camera phone, but it was much too dark to get a usable photo.  So picture this…a fairly heavy metal base, kind of an inverted wide cone shape, that sits in the cup holder attached to your seat.  Embedded in the base is a thick metal coil (Dave calls it flexible conduit) that you can bend into position.  (Think of those lamps where you can bend and twist the light into position.)  At the end of the conduit is a rectangular, shaded piece of Plexiglas.  When we received our thingamajigs, they were both standing straight up.  Once we sat down, we realized that if we left the devices that way then the words would be reflected into the middle of the movie screen…not cool.

They recommend that you get to the theater early to get a chance to play around with the device and find the best position, in order to see both the captions and the screen.  This is good advice and I am passing it along.  I bent, twisted, shifted in my seat and finally got my device to reflect the captions at the bottom right corner of the screen.  Poor Dave, though, bent his device down and then up a bit…and it drooooooped down, like a dying plant.  He played around with it, fiddling this way and that, and it would not hold position.  Finally, he crossed his legs and just held it in position through the whole movie.  (I guess he figured it wasn’t worth the long trek back to Guest Services to exchange it for a hopefully less-flaccid one.)

I did have a moment of panic as we were driving to the theater, because I realized I forgot my reading glasses at home.  I wasn’t sure if I’d be able to read the captions since they were placed closer to my face (captions on a movie or TV screen are no problem for me).  Luckily though, it wasn’t a problem and I was able to read them just fine.

During the previews and other things they show before the movie starts, they would periodically turn the captioning on.  It said something like, “Welcome to Rear Window Captioning.  Please adjust your devices.”  This gave us a chance to see where the captioning was going to be, and move the device around before the actual movie started.  I originally didn’t notice this – Dave had to point it out for me.  I was surprised at how flexible it could be – you could actually watch movie through the Plexiglas if you wanted to, or you could angle the captions waaay down at the bottom, the way I did.

It took some getting used to, glancing from the screen to the device.  My first impression was that the captions left the screen so quickly.  I’m used to being able to watch the screen, take everything in, and then glance down at the captioning to catch any dialogue I missed.  With RWC, the captions flash on and off so quickly that you can’t do that or you’ll miss the captions.

On our devices, the captions were in red so if you had the device lined up at the bottom of the movie screen and the background was orange or red, it made it really hard to read the words.

All in all, it was an okay experience.  I vastly prefer open captions, and so does Dave.  He disliked the RWC more than I did, probably because his device was so temperamental.  My experience wasn’t bad enough to say I would never see another RWC movie again – it’s still a vast improvement over the ALDS.

Apparently, the people behind us were wondering what the devices were.  Paige said they asked about them, but I had no idea – she was sitting two seats away from me so it must have been the people behind her, and I didn’t hear them talking.  I guess they asked her and she explained that they reflected captions for us, then showed them the reflector in the back of the theater that was showing the captions.

I always like knowing people are being educated about these kinds of things but I’m still disappointed that the theater didn’t have posters or signs showing the RWC devices and what they would do.  I’m sure more people would use them if they had any idea they were available!

Summer of Ennui

I’m always writing blog entries in my head.  If I could just publish right from my thoughts, this blog would be updated every day.  🙂  So let’s see…summer has been pretty laid back. Laid back, but yet weird. It’s been, like, the Summer of Ennui.  So many things have been contributing to this general feeling of distraction and dissatisfaction, like we can’t seem to get anything done.

The candle business has been unusually, deathly slow.  Summer is always a slower period for us but this summer has been like no other.  Normally we would take the extra free time to finish projects around the house or just go out and do things…maybe visit some museums in Chicago, for instance.  (Chicago is about 45 minutes away by car, but we rarely go there so it’s like a little vacation when we do.)  But the downside is, we have no money to do household projects or even a museum trip, because business has been so slow.  A vicious circle!

In addition, Dave’s health has been up and down (mostly down) this summer and many days he just doesn’t feel like himself, strong enough or good enough to work around the house or trek through a museum. He’s been coughing frequently since October or so, and they can’t figure out why. He’s seen an ENT doctor and a pulmonologist this summer, had a CAT scan of his lungs and a pulmonary function test, plus a couple of scopes sent down his nose into his throat (which he really, really hated). So far the verdict is acid reflux causing the cough. However, he never has acid indigestion or pain after eating, so this diagnosis makes no sense to me. Regardless, he’s taking Prilosec twice a day now and giving it a month or two to see if his cough eases up. In the meantime, he’s worn out and exhausted, and the energy he’s used to having is just gone.

We’ve managed to do some very low-cost projects around the house, mainly painting, which actually has made a huge difference. All of the paint is paint we already had (some we bought last fall, some was from a huge batch of paint we bought at a thrift store and just stored in the garage in case we ever needed it). So we paint, take frequent breaks, and admire the work we do manage to get done. It can take us a month to get a room painted but eventually it gets done!

I also made notes of all the free entry days for the Chicago museums – most of them don’t do this over summer, but summer is nearly over and it might be nice to take advantage of free admission this fall if Dave happens to be feeling well enough that day. So we can still have fun on a bare bones budget…it just takes some planning.

For me, part of what threw my whole summer off was my daughter deciding she wanted to move to her dad’s. It’s been a rough adjustment for me, and just one of those things at the back of my mind that was bothering me. It left me feeling unsettled and just generally unhappy for a long, long time. I’m only now getting used to the thought of having an empty nest. But she wanted to go to school out there and was really miserable at her school here, so I finally gave her my blessing. I think I’ll feel more settled about it once she actually starts school out there and actually likes it.  (She’s in her sophomore year now and starts at her new school at the end of August.)  I’m hoping she doesn’t start at her new school and decide she hates that one as well!

My one year CI surgery anniversary came and went on July 22. My one year activation anniversary is just a week away, on August 20. I have my one year mapping (one year!) on August 21. I’m really curious to see what happens and how my tests come out.

Lately I don’t even put the volume anywhere near the 12 o’clock mark (which is 0, I guess, on the volume control). I keep it down between 9 and 10 o’clock usually. This has been bothering me a little, like I’m regressing or something. I feel like I should be needing MORE sound, not wanting less volume. But putting it up to 12 o’clock is just uncomfortable for me most days. I mentioned it to Dave and he thinks it’s a good sign, like my brain doesn’t need as much volume to hear now. I don’t know what to think, but I’m definitely going to mention it during my mapping.

I also have spent most of the summer with my CIs on the background noise reduction program, because we’ve been keeping fans going most days. The background program (as I call it) is awesome for killing the sound from the fans but letting me hear voices, TV, etc. just fine. It does change the quality of the sound a bit, and sound is softer on the background program, so if I switch up to my regular program then everything sounds super loud again. It’s weird, how I’m just not tolerating volume very well these days. Maybe I need to have them lessen the volume when I go for the next mapping.

A couple weeks ago I had another weird hearing event, same as the kind I mentioned in my “Sick Hearing” post. Everything got really echoey and sounded strange. I noticed it when we came back from grocery shopping one day. It lasted for about 2 days, gradually getting better each day, until things sounded normal again.  All I can guess is that something changes my hearing – maybe some swelling, for whatever reason. Maybe barometric pressure…who knows?!  If I had gotten sick (with a cold, for instance) it would have made perfect sense to notice changes in my hearing but the hearing change was the only physical symptom I had.

Sometimes I feel like the Queen of the Worst Case Scenario.  Maybe it’s because I’ve had too much free time this summer, but I seem to be imagining all kinds of crazy scenarios and how I would deal with them. For instance, if we had some kind of catastrophic disaster, something that left us without electricity…eventually I wouldn’t be able to use my CIs.  I’d be back to lip reading and total deafness, all the time. Of course, the chances of this happening are rather slim but it doesn’t stop me from periodically dwelling on how dependent I am on electricity to keep me hearing. It also just highlights the fact that a CI is not a cure for deafness…there IS no cure for deafness.  I am still deaf, and I still tell people I’m deaf. I am really content with where I am at this stage of acceptance, though. If something happened and I couldn’t benefit from my CIs anymore, I could accept that. I kind of like being able to move from total silence to hearing with my CIs; sometimes it’s nice just to hear nothing, and then when I put my CIs on, the sound I hear is amazing and wonderful. It’s a little like the best of both worlds!  I’ve noticed sometimes Dave will tell me he’ll wait til I put my CIs on to tell me something, but I always encourage him to just tell me. I can still lipread and communicate without my CIs on, and I like to keep those skills honed.

Another scenario I occasionally torture myself with is the one where something happens to Dave – this is probably because he’s been sick, and he’s a leukemia survivor, so I’m always aware that every day I get with him is a gift. So I freak myself out by imagining what would happen if he wasn’t here, and I was alone. Totally alone.  I’ve actually never been totally alone before, because I was either married or had the kids here with me. Now the kids aren’t here and the thought of Dave not being here just freaks me right out. In this scenario, being deaf makes me feel really vulnerable and it’s not a feeling I like. It would probably be a little scary to go to sleep at night knowing I can’t hear if something happens, and there’s nobody there with me to alert me.

Moving on from the worst case scenarios that I really should not dwell on…another thing I meant to write about here is babies and toddlers that get CIs.  This thought just came to me one day: I often fiddle with my volume and programs, based on how things sound to me. If I’m having a day where volume is overwhelming, it’s easy to turn down the sound. I can switch to the background noise program if the sound from the fans is overwhelming, or if I’m at the mall.  I know that when I first wake up, sound is especially overwhelming after a night of silence…so I put my volume way down to begin with, and ease it up as the morning goes on and I get used to hearing again. But how do babies and really little kids deal with this, and how do their parents know? If anyone with a child with a CI is reading, I’d love to hear how it’s handled.  Does the audiologist train the parents about that sort of thing? I mean, do they realize how overwhelming it is when you put the CI on for the first time each morning?  I’m thinking mostly of pre-verbal kids and babies, who can’t communicate how things sound.  I just find it really interesting!  I can’t remember how I handled wearing a hearing aid as a kid, but I was 4 years old when I got it so I was able to tell my parents how things sounded.

Well, I’ve been writing while Dave was at the VA hospital for a checkup with his hematologist. He’s home now with the results of his latest tests. His pulmonary function test was fine; the CAT scan showed something and he can’t remember what it was called.  All he remembers is “central” and “nodularity” and that the doctor stressed that it was mild. Since this doctor is the one who mostly deals with his blood work (which he gets frequently, because of the leukemia and bone marrow transplant he had in 1993) he didn’t know much about the pulmonary stuff.  He sees the pulmonologist again on Sept. 11 and will find out more then, I imagine.  I think he may have to get a bronchoscopy at that time too.  Here’s hoping it’s something they can fix for him.