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Teamwork

I went to a new dentist last week, for my regular cleaning and updated x-rays.  I’ve never been fond of the dentist to begin with, but since I got CIs it is extra challenging because being reclined makes my CI processors (aka my “ears”) fall off.

I’ve tried many things over the years — wig tape, headbands, scarves, even a knit cap.  Nothing is foolproof (although the knit cap worked the best, since it also helps to keep my magnets where they need to be).  However, I am not about to pull out a knit cap in August.

This time around I used something called a Snuggie from Advanced Bionics, basically tubing made to fit my Harmony processors that fits snugly around my ear.  It works perfectly to keep the processor from being pulled off my ear as my head is reclined back.  The only issue that remained was keeping the magnets from being knocked out of place by the headrest.

Advanced Bionics Snuggie for the Harmony cochlear implant -- the clear tubing goes around the ear

Advanced Bionics Snuggie for the Harmony cochlear implant — the clear tubing goes around the ear

I played around with a scarf tied strategically over both magnets, but eventually decided it was too fussy.  I figured I’d just deal with the magnet situation if and when it arose.

In the end I didn’t have too much trouble; they were able to adjust the headrest so that my magnets stayed in place during most of my visit.  They did slip off when I was told to turn my head to the side, but those instances were brief and my other magnet stayed in place so I had enough hearing to still follow instructions.

What really impressed me, though, was when the dentist came in for the exam portion.  She had a bit of an accent, and originally asked me a question when her back was turned (she also had a mask over her mouth, just for an added challenge).  I had no idea if she was talking to the dental hygienist or me, so I stayed silent.  She turned back to me, and I met her eyes and said, “I can hear you, but I also read lips to understand what you’re saying.”

Her face lit up and she pulled the mask down.  “Thank you for telling me! That’s very good to know.”  Then she turned to the hygienist and asked her to repeat everything for me — although the dentist kept her mask on, everything she said was repeated by the hygienist so I could read the hygienist’s lips.  I’ve never had anyone in the medical profession do that for me before and it made a huge difference.

Not only did I get a clean bill of dental health, I came away feeling like my needs were met with respect, kindness and ingenuity.  It almost makes me not dread going to the dentist again!

Well, I’ll Be

I’ve had my cochlear implants for … wow, almost eight years now (in August of 2016). In the beginning, there are all kinds of, as we call them, “CI moments” – things we’ve never heard before, or sounds finally becoming clear, or whatever. After nearly eight years, though, you figure you’ve heard all the new things or had all the new hearing experiences you’re going to have.

So this morning I had a song stuck in my head, I’ll Be by Edwin McCain. It’s pretty popular now but when I first heard it in 1997 he was a fairly unknown artist and I didn’t know what to expect when I listened to the CD. I can still remember how it sounded, and how much I loved the song; I listened to it over and over, and knew all the nuances of his voice and the music.

I'll Be

Since I got my CIs, I don’t really listen to music much. When I was first activated, music sounded, well, godawful would be a kind way to put it. It just sounded like crashing noise. It got better every time I went for a mapping (where they hook you up to a computer and tweak the computer programs in the CIs) and eventually there came a time that I listened to a song (by Depeche Mode) and heard it the way I remembered it. I actually heard it better than I remembered it, because I was hearing parts of the song (various instruments) in each ear. I had never heard music in stereo before, because my right ear was always pretty bad – moderate to severe hearing loss until 1993, and then profound (i.e., I heard nothing) from 1993 on. I actually started crying the first time music sounded good through my CIs.

Anyway, Dave and I have different tastes in music and I never got into the habit of wearing headphones; it was just easier not to listen to music most of the time. Every now and then, though, I go through a phase and listen to a song or a whole CD.   I am not into new music as much; partly it’s because I’m apparently an old fogey who likes ‘golden oldies’ (anything from the 70s to about 1998) and partly it’s because my memory kicks in on a song I already know and helps me shape what the song should sound like.

I dug around and found my Edwin McCain CD and decided to teach myself how to copy it to my computer. (Yes, this is the something I had to teach myself. In 2016. Leave me alone.) I clicked on I’ll Be, popped on the headphones, and … hmmm. This is not how I remember it sounding. I was pretty disappointed. Yes, he has a raspy voice but it really sounded like he was growling, not the pretty, earnest song I remember. I kept the headphones on while the files were transferring, assuming it would go to the next song when it ended. I got preoccupied and didn’t realize that the song had started over. But I did notice that now it sounded better, a buttery, smooth rich sound closer to how I remember the song. ‘Huh,’ I thought, ‘I guess he sang the end of the song differently than the beginning.’ Then I put my cursor on the progress bar and saw that it was, like, one minute into the song. He wasn’t singing it better; I was hearing it a second time and my brain was already processing the sounds better. I listened to it a third time and there it was: the song I remembered.

Seriously folks, the brain is an amazing thing. Never take it for granted.

Words Are Very Unnecessary

On our way home from Dave’s one-month checkup with his hepatologist in Fort Wayne, we stopped at Subway for lunch. Although we like the food, Dave kind of hates going there because the ordering process confounds him. They ask a lot of questions, and for someone with hearing loss that’s a real drag.

I have an easier time with this kind of thing (as long as it’s in person) because I lipread, so I am usually the one to order. I just consult Dave first to make sure what he wants, or if he starts to order himself then I will relay the questions to him if he misses them.

Since it was just a light lunch, we did our usual and got the same sandwich in the foot-long size, and then split it. This location had a drive-through but we decided to go inside because I really struggle to understand anything through those speakers.

We were the only customers, and as we walked up to the counter the guy started talking. I wasn’t close enough to read his lips and had no clue what he said (he was talking really fast and also had a bit of a southern accent). I did my usual and just assumed what he probably said based on my past visits to Subway.

Well yes, I can relate to this.

Well yes, I can relate to this.

I told him the type of sandwich we wanted and the type of bread. He said something else that I missed, but I knew they usually asked about cheese and I thought I’d caught part of his question. “Did you say something about pepperjack cheese?” He nodded, and I confirmed that we wanted it. Then he asked if we wanted it toasted, which caught me off guard. I had to have him repeat the question a couple of times. After I answered him, I added, “I’m deaf and I’m reading your lips, so that’s why I sometimes miss what you say.”

Now, usually I add that I have cochlear implants and I hear with them; that way people know that I do hear sound but they also know that I’m reading their lips as well. But I figured eh, this is just a quick lunch order and why go into all that detail? Here’s what happened when I just let that statement hang in the air without further clarification:

The guy stopped talking.

He had been keeping up a constant patter while we were there, which was making it hard for me to tell if he was asking a question, making a comment about our order, or even perhaps just talking to himself. My statement silenced him, and what a gift it was!

He quietly made the sandwich and just kind of looked up when he got to the veggies, waving his hand vaguely in the direction of the options available. I smiled and said we just wanted tomato, nothing else, and no sauce.

Obviously he thought I couldn’t hear anything and there was no point in really talking to me anymore, so he resorted to his version of sign language – and it was perfectly fine with me (even preferable, if I’m being honest). I thought it was kind of hilarious; it’s been a long time since I’ve had someone react that way when I say I’m deaf. Even before I got my CIs and I really couldn’t hear, when I told someone I was deaf and reading lips, they would still keep talking to me the same way they had been.

(Before I get to my next story, I have to interject and say that Dave had his viral load tested at this appointment, and we got the results yesterday. As of one month into his three month treatment with Harvoni and Ribavirin, he has cleared the Hepatitis C virus! He never cleared it in 2013; he went from over 4 million to 11,000 but that was as low as it went. This time he started at over 3 million and BOOM … now it’s undetected. ! ! ! !)

The other hearing loss-related thing that happened around here was during a power outage. The power really doesn’t go out very often here, and when it does they get it back on within a few hours (at the most). It seems to go out at weird times, though, not during storms. The last time was about a week ago, after we’d had some rain come through. During the storms all was well, but about 3:15 in the morning my eyes just kind of flew open. I could feel that something wasn’t right; I just didn’t know what it was. I realized Dave wasn’t in bed, and then I looked over at the clock and saw that it was off – we had a power outage.  (Dave had realized about five minutes before me and was getting candles.)

It wasn’t hot so we didn’t have fans on (or else the room suddenly getting hot would have woken me up). I realized that when I’m sleeping I’m more sensitive to light (and the lack of it) than I realized. I always assumed I wouldn’t wake up from a strobe light on a smoke detector, and that I’d need something that vibrated the bed to wake me up. (Those systems are, by the way, very expensive.) Now I’m kind of wondering if the strobe light would actually do the trick. I must be more sensitive to that kind of thing when I’m sleeping since I don’t have hearing to rely on. Very interesting!

 

The Joy of Conversation

I just realized I left out an anecdote when I finished up Hazel’s repair story. (I was in the midst of the aforementioned cold at the time, and I was kind of powering through the story rather than the usual meandering way that I write. I don’t know if that’s a good thing or a bad thing.)

So anyway, I had mentioned that because we couldn’t get Hazel started, and we don’t have a second car, we had to have the car rental people pick us up at the house and give us a ride to the actual rental facility. We’d never done this before and weren’t sure how it worked. I thought maybe they would arrive with the actual car we were renting. We were debating the logistics of this when a car pulled up in front of our house and we heard the horn honk.

Dave reached the car first and got into the back seat. I was about to slide in next to him when the girl who was driving, we’ll call her Tina, told me that I was welcome to sit in the front seat. Back in the days before my cochlear implants, this would have made me extremely nervous. Sitting in the front seat means you are obligated to make conversation, whereas the person in the back seat can kind of sit back and zone out without looking rude.

Well, I didn’t want this nice girl to think I thought she had cooties or something, so I didn’t hesitate to sit in the front seat.

She was very friendly and talkative; this would not be a trip made in awkward silence. The first thing she told us was that this was not the car we’d be renting, and I laughed and admitted we’d just been wondering about that when she pulled up. Then I started telling her about our saga with Hazel, explaining why we needed a ride to the rental place (and thanking her profusely as well).

It was about a 25 minute ride to the facility because we’d had some snow and the roads weren’t completely plowed. I chatted easily with this girl for the entire ride, something that would have been agonizingly difficult for me when I just had hearing aids. I didn’t hesitate to ask her questions and make comments when she told us stories about her family. In the past I would have kept quiet in an effort to keep conversation to a minimum (less worry about not hearing something properly that way).

At one point she asked Dave something that he didn’t catch (sitting in the back seat makes it especially hard because you can’t lip read). So I turned around and repeated it for him, making sure he could see and hear me. Then he explained to Tina that we both had hearing loss – that I was totally deaf and heard with cochlear implants, and he was partially deaf and had a hearing aid for the ear that could still hear. She’d never heard of CIs so we explained how they worked, and basically we blew her mind. It was fun to see her expression change as we spoke, to see her amazement at the technology that makes it possible for me to hear.

When it was time for us to return the car a week later, Tina was working at the counter. We handed over the keys and gave her an update on our car. Then I asked her if she knew the location of the Michael’s store – we knew there was one nearby, we just weren’t exactly sure where it was. (We wanted to stop in and look at their Christmas trees.) She laughed and said, “Wow, God works in mysterious ways!” I gave her a quizzical look, and she went on to explain that she was just going through a bunch of Michael’s coupons that she was going to throw away because they expired in one day. Then she handed us two coupons for 50% off, and explained exactly where the store was (not far from where we already were). How crazy is that?!

I mention that because before my CIs, I would never have asked that question. I would look the information up on my cell phone or something, but I would never take a chance and ask another person where something was because I could never be sure I’d hear or understand the answer. Having the confidence to ask that question opened up a whole conversation about a craft Tina was working on, and also the aforementioned coupons she was nice enough to offer.

I’ve mentioned before that I have trouble with the phone, TV and movies unless I have captions. But there is a night and day difference in the most important thing to me, face to face conversations with people. As long as the person doesn’t have a heavy accent, I almost never miss a word.

As we walked back to Hazel that day, I remarked to Dave that I felt like I could talk to anyone now that I could hear so well. Of course, Tina was especially easy to talk to because she was so friendly and outgoing. But I had no problem keeping a constant flow of conversation going, and I never once worried about what I would say next or if I would be able to understand what she was saying.

It was such a good feeling, and so fun to connect with another person in a way that I never would have before my CIs.

Hearing Things

I was in the kitchen yesterday, making soup from the last of the Thanksgiving turkey, while Dave was in the living room, talking to Comcast. We had just bought a new modem earlier in the day and he was in the process of getting it set up. Since our captioned phone is voIP and needs the internet to work, he has to (reluctantly) make this call on his cell phone.

I could hear talking back and forth so I assumed he had the phone on speaker mode. It sounded like the conversation was going well; he was answering questions promptly and without hesitation. Then I heard him hesitate before explaining that he was hard of hearing, and could she speak a little slower? Uh oh.

“I … can you hang on for a second?” Dave race-walked into the kitchen, holding out his phone. “Can you understand this?” he hissed.

“Can you repeat that?” he asked the Comcast rep.

“Bleh, bah de hop der.”

I widened my eyes and shrugged my shoulders. I could hear a voice, but I couldn’t even tell if she was speaking English or not. I couldn’t make out even one word for him.

“Uh, can you say that again?” he asked. Again, gibberish flowed from his phone speaker. “I’m sorry!” I mouthed. I felt terrible, but I just had no idea. I could also feel his sense of panic; this was the only way to get the modem working, by calling Comcast to give the MAC address so they could work their magic. There was no other way to communicate with them to accomplish this; he couldn’t send them an email. His phone isn’t a smartphone so it has no caption apps (not that we know how to work those).

I dried my hands and walked into the living room to see if I could catch any of the conversation. It never got better for me, although Dave started answering questions again. (I think he got her to rephrase the question or statement he couldn’t understand.) After many frustrating minutes, he told her he was going to try something and he’d call her back. Somehow he got the modem working on his own.

The phone is always hit or miss for me; I can usually manage a short conversation if the person doesn’t have an accent, talks slowly and clearly, and I already know what the subject is going to be. That way, the captions can keep up and I get to hang up before I get too fatigued from trying to listen. Not everyone with a CI has trouble with the phone; some use it with no problem at all. But the phone is a major source of stress for me, and that makes it even harder for me to understand. It doesn’t really impact my life too much; in this day and age, I can get by with rarely using a phone and relying instead on texting and email. It is disappointing for me, though. I had hoped I would be able to hear perfectly on the phone after I got CIs. Instead, my phone skills went way down; without any natural hearing, I tend to hear noises but not make sense of what I’m hearing unless I have (accurate) captions.

Not all captions are accurate, by the way. When Dave talks to my mom, I always read the captions. Most of the time they make no sense. Here’s an excerpt from their conversation last night, transcribed exactly as it showed up on our captioned phone:

“… and she June as an cause human fed back so what is going on …,” and, “… and A the driver have been said in active something I can team the claim back to guess … .”

So yeah, the captions don’t always help. I was thinking about all of this when we started watching The Good Wife last night (no major spoilers for those who haven’t watched it yet, but if you don’t want to know ANYTHING about the episode then be warned). There was a trial, and they kept showing one specific juror. He was watching everyone intently, occasionally turning to whisper to the jurors seated next to him (and once getting reprimanded by the judge). Later in the episode, we hear him ask the man next to him what had been said. Just when we’re starting to wonder what’s up with this juror, the judge asks to see him and the two lawyers in his chambers.

Apparently one of the other jurors has informed the judge that he thinks this juror is partially deaf, because he’s having trouble following what’s being said. The juror asserts that no, he is not deaf. The judge persists, asking if there’s any reason he might not be able to understand the proceedings. Then the juror admits that sometimes, when he’s stressed, he suffers from Auditory Processing Disorder. (This is something I’m pretty sure I have, because it’s much worse when I’m stressed.) He assures the judge that he has coping mechanisms and isn’t missing anything being said.

The judge turns around, so the juror can’t read his lips, and asks a question. He doesn’t speak gibberish, but the audio and captions that we have on our TV reflect what the juror hears, not the actual question. He hears, “What waxing the number of the last wideness?” Then we get to see his coping mechanisms in action. The judge turns around, one of the lawyers protests that it’s not a common name, and the judge brushes off her complaint. He looks at the juror and asks what the question was. You can see a moment of panic on the juror’s face, then he takes a stab at it. “You asked me the name of the last witness,” he says. The defense lawyer looks triumphant, but the judge is no fool; he knows that her protest gave the juror a clue as to what the question was.

“Yes,” he says, “but the question is whether Cary Agos …” and he turns around again. Again we hear and see what the juror hears. “… hurt lemons bussing the important tree-mills of honeycuts.”

The room is silent while everyone looks to the juror for his answer. Finally he shrugs, and next we see him leaving the courthouse.

And that, folks, is how I hear many things if I don’t have visual cues to work from. Luckily I do really well if I’m in the room with someone, even if I can’t see their face. I can catch about 90% or more of what’s being said. It’s when sound is transmitted – through the phone, the TV, or at the movies – that I have the hardest time.

It was so gratifying to see a TV show get it right for once. We’ve seen ridiculous cochlear implant surgeries. (On House, when the patient came out of surgery able to hear already, and then proceeds to rip the implant out of his head with his bare hands … no. Just, no.) We’ve seen people (on Switched at Birth, of all places) call CI surgery ‘brain surgery.’ (Again … no.) But this was totally believable, and absolutely accurate.

Good job, The Good Wife!

Here Comes Speed Racer

I read the email subject line in confusion. “You’re the Top Vaseline Badge Holder from the J’Adore VoxBox”!” What? I read it again as it slowly sunk in that the email was from Influenster and it was in reference to the box of samples I’d received in February, what they called the J’Adore VoxBox.

In exchange for the free samples, all you really have to do is acknowledge that you received the box, and fill out an exit survey when the program ends. In between, though, you can do all kinds of things to win prizes from the sponsors of the sample box. You can review the items, post photos to Twitter and Instagram, ‘like’ the brands on Facebook, create Pinterest boards and Youtube videos, you name it.

Each brand had different tasks you could complete, if you wanted to. If you completed all the extra tasks, you earned a badge from the brand. I couldn’t complete some of the badges because I don’t use some of the apps/websites that were required. I don’t, for instance, have Instagram on my phone because it’s got no memory whatsoever and I can’t put more than one or two apps on it. (I have four on there right now and I have an ever-present ‘Low on Storage Space’ warning that drives me crazy. I can’t wait to upgrade when this contract is up at the end of July!) I don’t do videos of any kind, so if the badge required you to make a Vine or Youtube video, it just wasn’t happening.

Some of the badges were within reach, though, and I completed the tasks even though I never expected to win anything. The badge referenced in the email was for Vaseline Men’s Spray Lotion, which was actually an item for Dave. It’s good stuff, and I was already using Vaseline lotion for myself (it’s one of the few that I don’t feel like I need to wipe off after I use it – it sinks in without feeling greasy). I had no qualms giving it good reviews, and Dave really liked it as well.

So the sample box program had ended, and I never heard anything from any of the brands for which I’d completed a badge. ‘Ah well,’ I thought, ‘It was fun and I’m not surprised I didn’t win.’ I mean, there are thousands of people who get this box and participate in the extra activities. That’s why I had to read this email three times to realize it was not a joke:

“We’re pleased to announce that you’re the top Vaseline Men Spray Badge holder from the J’Adore VoxBox! To thank you for your participation, Vaseline is sending you on a high-thrill ride in a real NASCAR race car in a timed racing session!  You will also be receiving a bottle of Vaseline® Men Spray Lotion Fast Absorbing and a bottle of Vaseline® Men Spray Lotion Fast Cooling.”

After I accepted that this was for real, I started to panic a little. “Hey hon,” I called to Dave. “Can you come here and read this?” Dave read the email and looked at me in silent confusion. “Um, I don’t know if I want to do this,” I started to fret. “I don’t think I want to drive a race car!”

Now I was just nervous. I mean, what the hell?! I never expected to win the grand prize for this badge; I thought I might be one of the people who won a free bottle of lotion, maybe. I didn’t even really believe that people actually won the grand prizes of these contests, to be honest.

I am not somebody who is impulsive, who likes to do things on the spur of the moment. I like to plan everything out and worry about every little thing that could possibly go wrong. After I had my moment of fear, I started thinking about it some more. I mean, I don’t watch car racing but it goes without saying that the car would be going really fast, which is something I’ve never experienced. It could be kind of cool, you know? I kept re-reading the email and realized it said I won a RIDE in a race car, not that I would be driving it, so that calmed me down. (I was really scared when I imagined driving the car, to be honest.)

The email finished off just by asking me to confirm my address if it had changed. That leads me to believe that the package is going to be mailed to me. Originally I was thinking it would be this BIG DEAL, like they’d be flying me to some racetrack and taking my picture and using it for promotional purposes. None of that is mentioned though, and I would think they’d tell me if the NASCAR track is somewhere far away. I suspect it’s going to be a voucher to be used at a track (they have a bunch of them across the US) that I can redeem for a free ride.

I know it’s crazy to be scared of winning a grand prize, but I was seriously unsettled when I thought I’d have to fly somewhere alone (something I just will NOT DO anymore) and drive a race car. I know it’s an awesome prize, but for a scaredy-pants like me it was just terrifying. It’s kind of embarrassing to admit, but there it is.

So we’ll see – I’m betting on the voucher/coupon thing, to be redeemed at my leisure. If that’s the case, my only worry is whether I can wear the helmet over my two CI processors. (I definitely don’t want to be without my hearing in that circumstance!)

Now that the shock has worn off, I have to admit I’m just a little bit excited. What better way to force myself to try new things? Imagine me, flying around a race track! (Just be glad I’ll be in the passenger seat.)

Review: I Can Hear You Whisper, by Lydia Denworth

If you’re like me and you like to read books that touch on hearing loss, then I’ve got a book to recommend to you.  If you enjoy books that touch on scientific subjects in layman’s terms, then I’ve really got a book to recommend to you.

It’s called I Can Hear You Whisper:  An Intimate Journey through the Science of Sound and Language, and it’s written by Lydia Denworth, a former Newsweek reporter and mom to three young boys – one of whom has a hearing loss and wears a cochlear implant.

The book was described as “an investigation into the science of hearing, child language acquisition, neuroplasticity, brain development, and Deaf culture.”  I wasn’t sure if it was going to go over my head, but it sounded really interesting.  I was happy to discover that it was written in a way that made all the scientific information easy to understand for someone like me, who never took more than Intro to Physical Science in 9th grade.

The author deftly weaves her personal experience into the story, describing what it was like to discover her son’s hearing loss and the process she went through as she tried to understand how it was going to impact his ability to acquire language, both spoken and written.  If you have a child with a hearing loss, this would really be a valuable resource.

I learned SO MUCH by reading this book, things I never knew about cochlear implants (and I thought I knew a lot) and how they were developed.  There are chapters on how we process speech, how we learn to read, the plasticity of the brain (which is so cool, and is one of the reasons I hear sounds with my cochlear implant now instead of the weird beeps and warbles I heard when it was first activated).  She touches on Deaf culture, sign language, oral versus ASL – and all of these subjects, which can be so very touchy, are discussed in a calm, thoughtful way, with both sides presented fairly.

I was curious to see if the cochlear implant brand wars would be mentioned, or if she would show a bias toward the company who made her son’s implant (which is not the company that made mine).  I was very happy to see that this did not come up at all.  The book just presented the CI facts in a general way:  How they were developed, the testing involved, what early CIs were like (my goodness!), the challenges of hearing in a noisy environment for CI users, listening to music, etc.

Some of her descriptions of her son Alex’s early testing brought back unexpected, vague memories for me of my own testing as a young child.  When Alex suddenly lost all of his hearing and he told his mom, through cries and screams, “I can’t talk!” (because he can no longer hear himself talk) my heart went out to them both.  That is still the most startling thing for me, not being able to hear myself talk when my CIs are off.

I thought it was awesome that they found a tutor to come in and teach some ASL to the family; when I went deaf, that was one thing I really wished we could have done.  As she illustrates in the book, it’s not very easy to teach everyone ASL at once, especially young children.  I admire their efforts, though, to bring sign language into Alex’s life as a complement to his CI.

I could have kept reading this book for days and days; I was sad when it ended.  It gets five out of five big stars from me – look for it (e-book and hardcover versions) a month from today, April 17.

 

(I received this book from the publisher for the purposes of an honest review; my views are my own.)

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