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.)
For some reason, spring is not kind to my hearing. Every time St. Patrick’s Day rolls around, I remember the first time I went deaf. Well, the first actual hearing loss that I suffered happened when I was too young to remember; I wasn’t born with a hearing loss, it was discovered when I was four. A couple years earlier I’d had roseola and was hospitalized with a high fever, and the doctor speculated that was what caused my initial hearing loss.
But I wasn’t deaf, just hard of hearing. More so in my right ear than my left, but I could hear sounds in both ears. (I wore a hearing aid in my right ear.)
Spring, though, has brought deafness to me on two separate occasions. I’ve written quite a bit about the hearing loss I suffered in mid-April 2008, the one that left me completely deaf and prompted me to start this blog. As traumatic as it was to suddenly lose the rest of my hearing, I think the first time I lost my hearing as an adult was worse.
I don’t remember the exact day, just that it was very close to St. Patrick’s Day. I remember taking a rubber stamping class that focused either on making cards for spring, or maybe cards to celebrate St. Pat’s and Easter. In any case, the hearing in my worse (right) ear was fading and it made the class a real challenge. I didn’t socialize as much as usual because it was too hard to follow all the conversations around the long table where we worked. Instead I worked on my projects and went home, feeling worried and stressed.
Originally I thought it was my hearing aid, so I took it in to be checked out. I was really sure this would fix things, so when I was told that the hearing aid was fine, I got a bad feeling. I didn’t have an ENT, so I went to an urgent care clinic and told them what was happening with my hearing. They took a look and said I had an ear infection, which was weird because I felt perfectly fine. They prescribed antibiotics, which I dutifully took even though I didn’t believe the diagnosis.
When the antibiotics didn’t help, I found a local ENT. This was an older man with not much of a bedside manner. He just did a hearing test, looked inside my ear and then told me I was deaf in that ear. No, he couldn’t tell me why – there was no obvious reason. Sometimes it just happens. End of story. He sent me on my way, furious and confused and devastated. How had I lost all of the hearing in my ear?! My hearing loss wasn’t supposed to be progressive. I never, EVER expected to lose more hearing in my lifetime.
I found another clinic, doctors with a great reputation (ironically, they were the first to do a cochlear implant in Illinois) and made an appointment. I wanted a second opinion; I wanted answers. The doctor I saw was kind, patient, and answered all of my questions. Besides a hearing test, I also had blood work done and a CAT scan to check for an acoustic neuroma. (Side note: This was in the internet’s infancy, 1993, and I happened to see on the order that they were looking for an acoustic neuroma. I had no idea what it was, so I went to library and looked it up. And proceeded to freak. A tumor! I’m going to need brain surgery!)
The CAT scan and blood work came back fine, so I was started on a regimen of steroids to see if my hearing would come back. In the meantime, I was struggling to hear, to continue doing my job (I did word processing – on a Wang word processor) and communicate with people, mainly my then-husband (this was pre-Dave) and my son. (My daughter wasn’t born yet.) I was gripped with anxiety, sure that every day I would wake up and be completely deaf. I had no idea why this was happening, and no reassurance that it wouldn’t happen again. I didn’t have an ear mold for my left ear, so I couldn’t wear a hearing aid. Although I had still had some hearing in my left ear, I already had a profound loss and didn’t know if it was getting worse.
In the end, the steroids didn’t help. Hearing tests showed that I had lost all of my usable hearing in my right ear and just a small amount in my left, leaving it solidly in the profound range. I jammed the ear mold meant for my right ear into my left ear so I could hear. I cried myself to sleep every night. I felt alone, isolated, and absolutely terrified.
The doctor was kind as he explained that sometimes this just happens and they don’t know why; they call it Sudden Sensorineural Hearing Loss (SSHL). Maybe it was a virus of some kind, maybe my hearing loss was actually a progressive one and not caused by the fever when I was a toddler – who knows. Although he couldn’t promise me it wouldn’t happen again, he said it would be very rare. He recommended hearing tests every six months or yearly for a while, to keep an eye on things.
I don’t remember how long it took for me to stop being nervous every morning when I put on my hearing aid. For the first couple of years, I would panic when my hearing aid battery died, thinking I was losing my hearing again. It was embarrassing to wipe away tears after replacing a battery and hearing sound again.
What really helped me calm down was getting new hearing aids. I got analog bi-CROS hearing aids, which helped me ‘hear’ sounds on both sides. I had to get used to wearing a hearing aid in each ear, but that wasn’t too bad. The one on my right ear was just a transmitter, since I couldn’t actually hear in that ear. But it picked up the sounds on my right side and sent them wirelessly to the hearing aid/receiver in my left ear. When I first put them on, it was like light flooding a dark room. I didn’t need an adjustment period; I loved those hearing aids from the first moment I wore them. Things sounded the way I remembered them, even with no hearing left in my right ear.
It took 15 years for the other shoe to drop, for me to lose my hearing again like I always feared I would after the first time. When it happened, though, I knew I had no more to lose. It was a different type of grieving and adjustment, losing all of my hearing, but it was a small relief to stop worrying that it would happen again.
It happened, I survived.
Dave walked from window to window, peering out in a futile attempt to find the source of the noise. “Where is it coming from?” he puzzled, craning his neck out the deck door. I could hear it too – voices, loud talking, laughter, and frequent, ear-piercing high-pitched shrieks and screams. Mostly shrieks and screams, to be honest. It was driving us crazy.
Earlier in the evening, we drowned out the cacophony with a super-loud episode of Orange is the New Black. (So different from the book, but still awesome.) But we were done with TV for the night, downshifting into Just Before Bed mode in front of our computers. And our computers are situated in our dining room, next to an open window right by all the screaming.
Dave hissed, “I can’t see anything. They aren’t in the backyard, or up on their deck; I even went downstairs and looked through that window to check.” I listened for a moment, then said, “That’s definitely the little kids next door. I would recognize their screams anywhere.”
All summer long, we’ve been listening to these kids (probably about 5 and 8 years old, give or take a year) scream and shriek. They don’t seem to be capable of being outside without screaming all the time, right by our windows. (If not in the backyard next to our dining room window, then on the sidewalk in front of our house, so we can hear them screaming while we watch TV.) We never say anything, of course. Kids will be kids, and these aren’t bad kids…just the noisiest kids we’ve ever heard.
During the day it’s aggravating but not a big deal; I’ve kind of gotten used to the constant shrieking, kind of like hearing a dog bark all day long. But last night was an anomaly; it was fairly late for little kids, almost 10:30 at this point. It really sounded like the whole family was having a big, rollicking party in the back yard. Hence Dave’s amazement that nobody seemed to be out there, at least that he could see. There weren’t even a bunch of cars in the driveway to indicate extra people at the house. All he saw was the lights shining brightly from the interior.
We finished up our computering (Candy Crush Saga Level 160, whoo!!) and headed off to our bedroom, on the other end of the house. By this point, one of my CI batteries had died so I was down to one ear, and I could still hear the shrieks and piercing screams perfectly in our bedroom. It sounded like they were on OUR deck, or just under our bedroom window. I checked the rest of the neighboring yards, in case someone else seemed to be having a party, and all the yards were dark. (Apparently we aren’t the only non-partiers in our neighborhood, heading to bed by 10:45 on a Saturday night.)
I felt bad for Dave, who still has some hearing when he takes off his hearing aid. Isn’t that a weird thing to say? Usually I’m bemoaning all that I don’t hear without my CIs (um, that would be everything) and here I am, feeling sorry for Dave because he still has some natural hearing. All I had to do, though, was slip that other CI off my ear and BOOM…total silence. It was like someone slapped duct tape over every mouth next door. (What? No, I haven’t fantasized about doing that…who, me?!)
After Dave took off his hearing aid, I asked if he could still hear them. I knew how loud it still was, even on the other end of the house and hearing out of just one ear, so I figured he could. He claimed it was fine and not bad once he had his hearing aid out. And I gave thanks that I have this unique ability to go from silence to sound at my choosing. It’s one of the few benefits of being deaf and having cochlear implants.
This morning, Dave looked bleary-eyed and said he didn’t want to take our usual early AM walk. “I think I twisted my back somehow, when I was sleeping. Who knew sleeping could be so dangerous?! And man, I gotta tell you, those kids were screaming for hours last night.” He yawned and continued, “But I swear, they weren’t outside. I think they were actually in their house, in the lower level with the patio door open. I looked and looked, and never saw anybody outside.”
So it was a mystery, our late-night shriekfest. Dave is hopeful that, since school is starting later this month, the evening parties (or whatever it was) will die down. I figure that if they keep it up, one of the other neighbors will call the cops on them. (It won’t be us, especially since I can turn off the noise if it gets too bad, but the neighbor on the other side of us isn’t so generous.)
Summer is filled with loud noises, especially since we have our windows open. If it isn’t screaming kids, then it’s lawn equipment, motorcycles, train whistles – you name it. I’m glad that I’m not forced to listen to this noise pollution if I don’t want to.
After we finished breakfast today, I heard someone start up a loud, whining piece of equipment outside. It sounded like a leaf/grass blower; I especially hate those. I smiled at Dave and said, “Looks like this is a good time to take my shower.” And I slipped off my CIs and went happily into the silence.
One thing I haven’t talked about here in a long time is tinnitus. I’ve always had tinnitus in varying degrees; it ramped up quite a bit when I lost all the hearing in my right ear in 1993, and then settled down again after a while. Usually it would go away when I put my hearing aids on. My brain seems to just go a little crazy when there’s no sound coming in, so it likes to make it up, I guess.
If I had tinnitus when I was wearing my hearing aids, then it usually signaled an impending illness or it was a side effect of stress. I’ve never had tinnitus as a result of something I ate or drank (caffeine, for example) or from medication. All the advice floating around on the internet regarding changing your diet to eliminate tinnitus was useless to me. If I was sick, or about to get sick, I got tinnitus and nothing stopped it except becoming healthy again. If I was stressed out, I could usually count on the tinnitus fading away once I introduced sound via my hearing aids. At night, or any other time I didn’t wear my hearing aids, I had tinnitus again. (Sometimes I could keep a fan running at night and the white noise would keep the tinnitus at bay, since I still had some natural hearing before 2008.)
If you’ve never had tinnitus (ringing or sounds in the ear) then it is really hard to describe. You definitely hear the sounds, but you can tell they aren’t coming from an external source. It always sounds different to me – sometimes it’s a low hum, sometimes chirps and beeps, and I’ve also had tinnitus that sounded musical. It roars, it clicks; some days it’s like Morse code, some days it’s like a train rushing through a tunnel.
Whenever I imagined being deaf, I always imagined dead silence. Hearing nothing. Just a big void, if you will. When I actually lost all of my hearing, I was horrified to have sound replaced by tinnitus. It was loud and constant. There was no way to make it go away, because there was no way for me to hear. I couldn’t introduce sound like I used to.
If I dwelled on it too long, it would’ve made me truly crazy. I mean, I had noise in my head all day and night long; the only time I got relief was when I was sleeping. For me, being deaf meant being locked into a prison of constant, hellish internal sound.
Since I knew there was nothing I could do about it, I tried to embrace it as much as I could. I took comfort in the fact that at least it gave me the semblance of hearing something. It wasn’t like someone just flipped a switch and my world suddenly went quiet. Knowing I was at the mercy of this noise, I just did my best not to fight it and, when I could, to find humor in some of the crazy sounds tumbling around in my head.
In those early days, it was just TINNITUS, in the middle of my head. I couldn’t have told you which ear it was coming from; it just was there, everywhere, not one side or the other. Now when I get tinnitus (very rarely), it’s easy to pinpoint which ear it’s coming from. I have it a little bit as I’m typing right now; my CI processors are off while my wet hair air-dries. I have a very low, constant hum in my left ear, and my right ear has a high pitched whine that sometimes turns into chirps and clicks.
The difference now is that I know once my hair is dry, I’ll put on my CIs and the tinnitus will melt away. I’ll hear the sounds of my environment and not the sounds in my head.
Getting cochlear implants completely took away my tinnitus. I had tinnitus after surgery (sometimes very VERY loud, like a roaring train) but once I was activated…poof, it was gone. The first time the house was quiet and I was wearing my CIs, sitting there in actual silence, I actually got teary-eyed from relief. It was so nice just to hear nothing at all.
Now I hear silence all the time. If it’s quiet and I have my CIs on, there’s no tinnitus. If I have my CIs off, I usually don’t have tinnitus. It might sneak in, very quietly, but not enough to bother me and definitely nothing like what I used to experience. If it does ramp up and get crazy, then I know I’m either stressed out or getting sick, just like before.
If you suffer from tinnitus, I know how miserable it is. Believe me. For me, the only cure has been sound…either through a hearing aid or cochlear implant.
I’ve written about this before, but it’s on my mind again because tomorrow marks 15 years (15 years!!) since the day Dave and I met in person. Before I met him and started hanging out with him, I had really never been around someone with a hearing loss. I learned the hard way that personally having a hearing loss did not mean I was automatically aware of how to communicate with someone else who was hard of hearing. Kind of like how going deaf didn’t suddenly give me the power to understand and communicate in sign language.
I’m the only person in my immediate family with a hearing loss, so I grew up knowing they could help me out if I didn’t hear something. All of my friends, boyfriends and my first husband had normal hearing. I was 33 when I met Dave, so I’d had plenty of time to get used to having other people help me out when my own ears fell down on the job. That was the first big eye-opener for me.
I’d hear something and turn to Dave. “What was that?” He’d shrug and say, “Beats me!” I’d leave the water running in the sink, walk off and forget about because I didn’t hear it. He didn’t hear it either; who knows how much water we wasted before one of us noticed the silent stream gushing forth from the faucet.
We’d go out somewhere, and I would actually have the advantage because I was better at reading lips. The cashier would give me the total, and I wouldn’t really pay attention because I was used to the person I was with being able to hear and relay the amount to me. Dave would be silent – he had no idea either. I learned to be more vigilant, especially in noisy situations. I couldn’t hear well, but I could read lips and thus became the ‘hearing person’ in that situation. Talk about role reversal!
I was used to just talking, probably at a lower volume than normal since my own voice always sounds loud to me (whether I had hearing aids or CIs). I didn’t bother to make sure Dave could see my face, or that I was even in the same room. I’d get no response at all from him and I’d realize, “Huh. What an asshole I am – I’m not even attempting to be considerate!”
It probably took a month or so for me to get used to this, checking my annoyance if he didn’t hear me at first – it was my fault, for not doing what I knew needed to be done for him to understand me. It was so weird to realize I was really bad at being considerate and thoughtful when it came to communicating with the man I loved. It truly was not second nature at all.
When we first met, my hearing loss was a little more severe than Dave’s but in the opposite ear. So he wears a hearing aid in his right ear; I wore mine in my left ear (and the transmitter on my deaf right ear – they were wireless bi-CROS aids). Dave just wears the one hearing aid and is profoundly deaf in his left ear. So we got used to positioning ourselves so our good ears were next to each other. We have a double computer desk and Dave sits to my left; when we watch TV or movies, I sit on his right side. When we go for walks, I’m on his right side. If we’re both in the car, he always drives (that way his good ear is next to me). The only time I drive now is if I’m going somewhere alone – I’m getting a little spoiled, always being able to kick back in the passenger seat! 🙂 I contribute to our road trips by operating and translating the GPS system for him – half the time he can’t understand what it’s saying, and the other half of the time he chooses to be ornery and ignore the directions while yelling at Maggie (our Magellan GPS…you’ve named yours too, right?!) and telling her she’s crazy.
I learned that even though our hearing losses were a little bit different in severity, being able to read lips gave me the advantage in noisy situations. I got used to being the one to help if he didn’t hear a question from the waitress or cashier or salesperson.
So over the years I learned the tricks to communicating with a hard of hearing person. Make sure they can see you when you talk, and make sure you’re talking clearly…not too loud or soft, no exaggerated lip movements, not too fast or too slow. Dave tends to leave his hearing aid out, especially in the morning, so I try to remember to look at his ear and see if he’s wearing it. If not, I talk louder and stand right in front of him.
If I’m behind him, I’ll gently touch his arm to get his attention. Sometimes this still scares the crap out of him, but I learned a gentle touch is better than a tap or grabbing his arm or something. If there’s a really loud noise (coffee grinder, loud music), I’ll wait until it’s over before I talk. Sometimes I can’t tell if he can hear me or not, so I ask. “Can you hear me? Am I speaking clearly enough?” We both sometimes still do the deaf nod thing with each other, but by now we can usually tell when the other is faking and I, personally, derive great joy from calling Dave out on it.
When I went deaf (almost five years ago now), Dave was so amazingly patient and thoughtful. He never expressed a single iota of frustration over having to repeat himself. He happily learned signs with me and was willing to try whatever I was interested in (we even watched a DVD on cued speech). He never told me, “It’s not important; never mind.” I think patience and kindness are so important – it goes such a long way when someone wants to communicate with you and you take the time to do what needs to be done to facilitate that. No eye rolling, no exasperated sighs, no sharp tone of voice – just kindness and patience. It’s easier said than done!
Now I’m in a weird position where sometimes I hear much better than Dave does, even though I’m technically deaf. I have a much better time understanding people with accents, using the powerful combination of my cochlear implants and speech reading. Many of Dave’s doctors have accents, and they share information we really need to know, especially with his Hepatitis C treatment coming up (it starts April 10th). Whenever he has an appointment with a specialist or for anything other than a routine checkup, I go with. I take notes. I make sure he doesn’t miss anything, and that we advocate for whatever he might need.
It’s been 15 amazing years, and he has taught me so much. It really all started the first time I realized this was going to be a different experience, dating a guy with hearing loss. He was adding milk to my coffee, and he told me to say ‘when’ because he didn’t know how much I wanted. He poured; I said, “When.” He kept pouring, and I thought, What the heck?! Why isn’t he stopping?! It finally dawned on me…he didn’t hear me! I yelled, “WHEN!” and he looked over, startled, just as the cup was about to overflow. And so it began…my hearing loss education. 🙂
On Friday Dave and I went over to our local Habitat for Humanity ReStore, since everything in the store was 20% off. We scored a few great deals that saved us lots of money – 5 gallons of driveway sealer for $4, a brand new (in the box) toilet seat for $4, a bunch of stainless steel screening for $2.50 and some cove base to use in the downstairs in the entryway (a whole box of it for $2). As we were leaving, I noticed a flyer for a demonstration the next day on Annie Sloan’s Chalk Paint. I’ve heard a lot about it (kind of hard not to if you follow a lot of home décor blogs or Pinterest boards) but had never actually seen it, so I was curious.
So we went back yesterday, and at first we couldn’t find the demo. There was no signage, so we walked through the whole store. I couldn’t remember how long the demo was for, so I started to think maybe we missed it (we got there about an hour after it was supposed to start). Finally, after walking the perimeter of the entire store and ending up back at the front, we noticed a table set up at the far end. Bingo!
The women demonstrating the paint were really nice, and there were a few other people gathered around the table. I positioned myself so I could see their faces, and then started asking questions. Lots of questions. It was awesome – I was able to find out everything I wanted to know, got to see examples of various ways to use the paint and wax finishes, and the demonstrators seemed happy to have lots to talk about. We hung around for about 20 minutes, and then thanked them and moved on.
After we left the store and we were talking about the demo, Dave said, “Boy, you were talkative. Really talkative.” Then we kind of laughed, because usually I clam up in those situations. We’ve been to lots of conventions with vendor/exhibit halls, and usually I just walk by and look, or maybe stand in the back and watch. I never talk or engage the people in conversation. When we used to go to candle conventions, I even knew many of the vendors because we ordered from them; even then, I was very quiet. A big reason is because it’s so hard to hear in those situations; I really didn’t want to be in a position where someone was telling me all this stuff and I was doing the deaf nod, pretending to understand. (Back then I had my bi-CROS analog hearing aids, which had no program to suppress background noise…it was all just LOUD.) Part of it was worry that I’d be pressured to buy something, when I just wanted information. Part of it was just my natural shyness and discomfort with making small talk/casual conversation.
After we started going to HLAA conventions, once I had my CIs, I started to come out of my shell a little bit. I was still kind of shy, but I started to ask more questions, make eye contact (one thing I really avoided, since it invited conversation) and participate more in the product demonstrations.
Even though the ReStore was loud (lots of banging from things being moved around, as well as the general cavernous, echo chamber effect due to the building) I did okay as long as I could also lip read. I didn’t miss anything, and I just had a blast asking all the questions I had about the paint. I could see Dave periodically looking at me, kind of like, ‘Who is this woman and what has she done with Wendi?!’ I know this isn’t a big deal to most people, but for me it’s nice to shed some of that fear of starting a conversation with a stranger!
In non-hearing-loss-related triumphs, I actually picked up Maxie, our former-feral mom cat. If you’ve been reading my blog for a while, you’ll remember an entry I wrote where I worried about how we’d get Maxie and her two girls, Alice and Grace, into carriers when it comes time to move. Although they’ve been living indoors with us for almost seven years now, we still can’t really pick them up. In all other aspects, they’ve become regular domestic cats (although it took a few years) – we pet them, they come to us when we call them (and also just for attention), Maxie has progressed to sitting on my lap if I’m laying down or sitting on the couch; the girls (we still think of them as kittens even though they’re now seven) are more shy, but Alice has occasionally jumped up on the couch with me, and Grace will lay next to me in the morning if I’m still in bed and Dave has gotten up.
But picking them up, or manipulating them in order to trim their nails or get them into a carrier? Hell no. With Maxie, as soon as you run both hands along her sides, she slinks to the ground, out of reach, and runs away. The younger girls don’t even let us get that far! Well, a couple days ago Maxie was sitting on my desk chair and I wanted to sit down. With our fourth cat Sabrina, it’s no big deal – I just pick her up and deposit her somewhere else. (She’s the only one, besides Maxie, that ever sits in my chair.) Well, Maxie was pretty comfortable and I figured if I slid my hands along her sides, it would freak her out and make her jump off. I was shocked to see her stay in a sitting position, so I figured what the heck…let’s try this. I leaned over, slid my hands underneath her and lifted her to my chest (not a long distance, since I was leaned over her back). She started complaining, making this moaning kind of meow she does when she sees an outdoor cat on the deck. I kept talking to her and deposited her on the floor; the whole time she kept her ears erect and her tail perky so she didn’t have her usual physical signs of distress.
Dave watched all of this in shock, then immediately began to praise her. And that little stinker just strutted around, tail held aloft, as we petted and complimented her on her bravery. I haven’t tried it again but the next time the opportunity presents itself, I will…hopefully we can do this enough that she’ll finally realize we aren’t trying to hurt or trap her when we do it. Yay, Maxie!
On any given day, you can usually find me or Dave frozen in position like startled rabbits; head tilted, eyes to the ceiling. “Where is that sound coming from?” we murmur, as something beeps, clicks or bangs in the distance.
We start wandering around, turning back and forth as the beeping or dripping continues. Sometimes we can’t even tell what we’re hearing: “What the hell is that sound? Is the water running?”
If we’re lucky, Paige is home and she can clear up the mystery with a few words: “It’s coming from downstairs.” “The faucet is dripping.” “It’s Dave’s hearing aid whistling.” (This last happened when he was asleep and had set his hearing aid on the coffee table, but forgot to open the battery compartment door to shut it off…hence the whistling.)
Being able to localize sound is one of those things we take for granted. You hear someone call out to you and you turn in their direction. You hear a car engine and know to look in that direction to see how far away it is. Something beeps and you walk towards it to change the battery or get your food out of the microwave.
Dave and I have the double challenge of first trying to figure out what it is we’re hearing (for some reason, running water is really hard to ‘understand’) and then figure out where the heck the sound is coming from. It’s incredibly frustrating!
I used to wear bi-CROS hearing aids, which meant that I wore a receiver on my deaf right ear, and it transmitted the sounds wirelessly over to my left ear, which had a moderate-to-severe loss. It gave me the impression of hearing from both sides, but was absolutely no help when it came to localizing a sound. Everything just sounded like it was in front of me or off in the vague distance.
Dave can’t stand the way bi-CROS aids sound, so he doesn’t wear anything on his deaf left ear and just wears a hearing aid in his right ear. Of course, everything sounds like it’s coming from his right side.
I’ve noticed, now that I’ve had my cochlear implants for over 2 years, that I’m getting better at figuring out where a sound is coming from. More and more, I’m the one who answers when Dave asks where a noise is coming from. I can tell if it’s inside or outside (this is more of an issue when the windows are open), upstairs or downstairs, to my right or left.
Sometimes I close my eyes and listen for a while; it just happens. I can just tell which ear is receiving the sound I’m hearing. It’s something I’ve never experienced before and it’s not a big dramatic thing – it just kind of happens and my brain makes the connection. I don’t know how long it took before I realized I knew which direction sounds were coming from, but it’s definitely something that is quietly improving as time goes on…behind the scenes, so to speak.
Right now I can hear my cat meowing and I can tell she’s to my left. Dave just cleared his throat and my right ear heard it. I hear a kind of ambient noise and my guess is that it’s the refrigerator…I hear it more in my left ear, and the fridge is behind me and to the left. It is so cool to hear this way!!
The first few months after I was activated, everything just sounded like it was “in my head”. I was so busy learning what everything sounded like that figuring out where the sound was coming from was just too much information. It’s amazing to me how much my brain is still learning and how much it’s adapting, even a couple of years later.
It’s still not perfect; that incident with Dave’s hearing aid happened last week, and I actually didn’t hear the high-pitched whistle at all…Paige heard it. But I know it will just get better with time, and that’s fine with me!
Before I lost all of my hearing, Dave and I had pretty similar degrees of hearing loss. There were a few differences – I always preferred bass and hated high-pitched sounds; Dave thinks bass sounds terrible and it really bothers him. But in general, if there was something I could hear, he could hear it too.
Now with my CIs, I keep assuming he can hear what I hear. It’s really hard to get used to the fact that at times, he can hear 100% better than me (when I have my ‘ears’ off) and other times, I hear things that he doesn’t.
We’ve been taking walks in the morning and the cicadas are out in full force. When we walk out the door, the sound just assaults me – it’s really, really loud. I’ll stop, cock my head and say to Dave, “Do you hear that?” and he’ll look at me like I’m crazy. He just totally doesn’t hear it. Then I’ll say, “It’s so loud! Turn up your hearing aid.” So he goes along with it, turns up his hearing aid…nah, nothing. It’s just out of his range of hearing — that really high-pitched sound they make.
It was hard for me to believe he couldn’t hear it because that’s just not an experience we’ve had…I could always relate to what he could and couldn’t hear. Now I’m learning to just accept it and not think he can still hear something if he turns up his hearing aid. (How annoying I must have been – to his credit, he’s always been a good sport about it and never seemed irritated. Sorry, honey!)
Actually, Dave’s hearing has been worse lately and it was a little scary last week. I heard him clicking his tongue and snapping his fingers, the typical thing he does to test the volume of his hearing aid. He’d look puzzled, take off his hearing aid, check the volume. Finally he admitted he could barely hear. I suggested cleaning his ear, in case there was some ear wax build-up. It felt very familiar – exactly what I was doing when I lost my hearing two years ago. Ear wax turned out not to be the problem, and finally he switched hearing aids. He tried on one of his back-up aids and that worked, although the sound quality wasn’t as great as what he had been used to. It looks like his newest hearing aid has failed, so he has an appointment in a week and a half at the VA hospital audiology dept. What a relief that it was his hearing aid and not his actual hearing!
Funny thing though, Dave isn’t as concerned about hearing as I am. It really didn’t even faze him to think he might be losing most of his hearing. He will still get up and wander around the house without his hearing aid on, whereas the first thing I do is put my CIs on. When he’s reading, he’ll take out his hearing aid; it would never occur to me to do that. Maybe it’s a mom thing – I feel like I need to hear my best all the time, even though my youngest is almost 16 and it’s not like she’s going to be crying in her crib and I won’t hear her. (!) Just a habit I find hard to break, I guess.
I do find myself periodically spending huge chunks of time without my CIs on now, though, because I stopped using a blow dryer and have been air-drying my curly hair. It can take hours to dry so there are some days I don’t put my ‘ears’ on until early afternoon. I actually don’t mind it – my speech reading skills haven’t suffered since I got my CIs, so I can still follow conversations just fine.
Coming up on two years since I got my CIs activated: August 20th. I was telling my son the other day that certain exercises are hard to do with CIs, things like sit-ups and jumping jacks. I either have to wear headbands to try to hold the processors and magnets on my head, or I have to take them off entirely. So after I finished telling him the things I couldn’t do, he said, “Yea, but you know what you can do? You can hear.”
I’m on a little music kick now, so I thought I’d show everyone how I use my MP3 player with my cochlear implants.
If I’m just sitting at the computer or whatever and want to quickly listen to music, I can put headphones on. These work really pretty well and are actually easier to use with CIs than with the hearing aids I used to wear. My hearing aids had a microphone on top of the hearing aid case (which sat on my ear — they were behind-the-ear hearing aids), so I used to have to actually hold the headphone in place so it would rest on top of the hearing aid. I couldn’t let go or they would slip off, unless I was wearing the really big, totally-cover-your-ear kind of headphones. Earbuds were totally out, obviously. On top of the aggravation, I only heard things in my left ear because my right ear was totally deaf. I’d never heard anything in stereo before.
With my CIs, I use an earhook called a T-Mic. Here’s a picture of how the T-Mic fits on my ear:
The T-Mic curves down into my ear and places the microphone in the ear canal area, so I can wear headphones as they are meant to be worn, and the sound is easily picked up. I also hear in BOTH ears now, and I’m finally realizing how cool it is to hear certain instruments/sounds in each ear instead of hearing everything through my left ear only.
Last weekend we wrestled our treadmill up from the garage and set it up in Eric’s old room. I really wanted to get back on the Couch to 5K program which we had started over the summer, but I can’t handle running outside in the freezing cold, snow and ice. So I fired up the treadmill, grabbed my MP3 player and headphones, and started walking. After about 2 minutes, I shut the treadmill down and walked out of the room. It was so loud, the sound of the treadmill humming and my feet jogging along, I could barely hear the music. I can only turn it up so loud before it starts to sound distorted. So I went to Plan B, and this is how I always listen to music now when I’m on the treadmill. Are you ready? It’s a little involved but the end result is pretty cool!
First I had to convert my MP3 player to work with my Direct Connect cables. This is something that Advanced Bionics offers for people who have their brand of cochlear implant, and it lets us connect directly to a battery-operated device like an MP3 player. The sound goes right from the MP3 player into my brain, eliminating the need for headphones. (Side note: I’m sure other CI manufacturers have something similar — I just happen to know the most about the Direct Connect since it’s the one I use.) 🙂
The Direct Connect is actually two cables – one plugs into the device, and has a connector on the end for the second cable, which ends in a small earhook that doesn’t have a microphone like the T-Mic does. It ends up being really long!
Since I have bilateral cochlear implants, I need to be able to connect two Direct Connect cables to one device. Dave happened to have an adapter that fit my MP3 player, so first I plug the adapter into the headphone jack of the MP3 player. The adapter has two openings, so I plug a Direct Connect cable setup into each of those two openings.
This is what it looks like, all connected together – I stretched it out to full length, and you can see it goes the entire length of the kitchen island!
Here’s each end of the above setup:
Now I need to get my cochlear implants ready, so first I take them off:
Then I remove the T-Mic earhooks (they twist off):
Then I put the small earhook on each CI, so the two CIs are connected to my MP3 player:
I have a case that I pop the MP3 player into (and tuck some of the extra length of cord into, so it’s not hanging down) and that can hook onto the waistband of my pants. It’s a little big (it’s actually the old case for my PocketTalker listening device) so I’m on the lookout for one that fits better.
I asked my audiologist to give me a program for the Direct Connect that gives me about 25% microphone and 75% Direct Connect – that way I can still hear if someone is talking to me while I’m using my MP3 player. I do still hear a little of the treadmill, but the sound is GREATLY reduced. The Direct Connect puts the sound right into my head without as much distracting background noise like the headphones were.
This is what I look like, all Direct Connected to my MP3 player:
It’s a little convoluted compared to just popping headphones on, but the end result is so worth it!!
By the way, Sabrina is also a big fan of the treadmill:
You know what I really like about cochlear implants versus my hearing aids? When the battery dies, that is IT. There’s no wishy-washy period where it sounds like things aren’t as clear but…am I imagining it? Maybe I’m just getting a cold or something (which used to affect my hearing). With the hearing aid batteries, it seemed like things would get kind of ‘soft’ and I didn’t always have a battery tester handy to check. Eventually I’d get aggravated enough to change batteries, which sometimes helped and sometimes I just couldn’t tell. Did I waste a perfectly good battery by throwing it away and putting in a new one?
With the CIs, I never notice a period of sound getting fuzzy or softer or whatever. As far as I can tell, when my rechargeable batteries are losing power, it doesn’t affect how my CIs perform. But when they are out of power, BAM. The CI just turns off completely. It’s very decisive and “Okay, go put a new battery in now…no question about it.” I love it!