Category Archives: Cochlear Implants & Hearing Loss

On Taking Things for Granted

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My pretty ruby red Naida CI Q90 next to my Dark Sienna Harmony processor

You know, one of the reasons my posts slowed down here was because things just became … normal. I woke up every day, put on my CI processors, heard my world in a way that felt normal to me, and that was about it. Once you get past the early days where every new sound is a revelation and it’s just so freaking cool to HEAR again, there’s not much to say.  And, um, you kind of start to take things for granted.

This past Saturday I expected to be like any other day. I put on my right processor … beep, I can hear, good to go. (Actually, with the new processors I can switch them up and it doesn’t matter which ear they go on – another really helpful improvement.)  Put on the left, start applying my moisturizer, finish my moisturizer and hey, I can’t hear. WTF?! I took off the processor, pulled the battery off and put it back on, and watched the LED lights to see what happened. Usually I’ll see four flashes to indicate a full battery, and then a quick green light. This time I saw nothing for a long time, and then a solid red light that didn’t go away. Fuck.

I still wasn’t too nervous; I figured maybe somehow my battery didn’t recharge overnight. So I tried all the others, with the same result.

It’s funny how entitled I feel now – how dare I not be able to hear?! This is ridiculous and awful! And then I remember that it was my reality (only worse, because I couldn’t hear AT ALL) for so many months when I first went deaf.

Dave was still sleeping so I began quietly opening dresser drawers, trying to remember where I put my old Harmony processors, batteries and battery charger. I never expected to be using my backup processor so quickly but at least I had it. Since my left ear is much stronger, I put the new Naida CI on that ear and put the Harmony on my right. (Which meant I had to figure out which processor went on that ear; with the Harmony, if you put the wrong processor on the wrong ear, it will not work at all.)

I came downstairs to use the computer and see if other people had experienced a similar issue and if it was, indeed, a fault in the processor. It wasn’t too bad, really – I could tell that I was hearing differently on the right side but it wasn’t really jarring. But the house was silent, and once Dave woke up and came downstairs, it really hit home how differently I hear with the Naida Q90 versus the Harmony.

My right ear is weird – I have electrodes turned off on that ear, and high pitched sounds make me really dizzy. With the Harmony I was always turning the volume down or covering the microphone if there were sudden loud noises. It wasn’t until Saturday morning that I realized I hadn’t had to do that once with the Naida.

Dave pulled out dishes to feed the cats, filled the metal vacuum pot and put it on the stove to heat for coffee, coughed and cleared his throat … and I immediately had to pull the Harmony CI off my ear, look at the volume wheel and turn it down.  All of those high-pitched sounds were unbearably sharp to me, almost painfully so.

As I went about my morning, I remembered that my headpiece cable for the Harmony was frayed, which meant sound was cutting out every time I turned my head or smiled.  So I’d smile, suddenly hear nothing, after a second there’d be a loud WHOOSH of sound (because remember, the Harmony doesn’t activate ClearVoice right away), and finally the sound would moderate to a comfortable level … then I’d turn my head and the whole thing would repeat. It was maddening.

I thought hey, maybe I can wear the new headpiece with my old Harmony! I went upstairs to check, but the connections aren’t compatible. Then I remembered I’d received some old equipment from a fellow who had upgraded quite a while back, and there’d been a headpiece cable included. I never even opened it because my headpiece and cable for the Harmony is a one-piece unit. But I figured I’d check and YES, this cable worked with my Harmony! So I do have one functional unit using that cable and the new magnet headpiece that I wear with my Naida.

My email to Advanced Bionics was in vain because it was the weekend, but I did hear back on Monday afternoon. I have to admit I’ve noticed a difference in the Customer Service response compared to my early days of wearing a CI. The customer service reps often seem confused and not as knowledgeable as they used to be. The person who helped me asked for some information, which I provided, and then said she entered a processor replacement request, gave me an RMA number and referenced my old audiologist in Illinois, even though I’d just given her my new Michigan audiologist information. That really gave me pause. I corrected her, but come on, really?! This is pretty important stuff here!

I’m supposed to have a new processor in two business days but I’ve heard nothing since – no tracking information, etc. I don’t know if my processor will arrive already programmed or if I have to take it in to have the programming put on. (I know I could ask but eh, I figure I’ll know soon enough once it gets here.) In the meantime, I’m realizing how much I’d already gotten used to my new hearing. I can’t really use the ComPilot – it only works in one ear (the Naida) and everything sounds really uneven, so I prefer just to do without for now.  I’m back to wearing headphones and using an MP3 player at the gym.

And I know, boo hoo, poor me — “You want some cheese with your whine?” I am still a deaf person who can hear! Totally not complaining. But I can’t help but compare and realize how much I really did take my bionic hearing for granted, especially with the improvements since I upgraded. I guess it made more of a difference than I realized!

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What’s New

 

Naida CIQ90 on top (Ruby Red) and my old Harmony CI processor on bottom -- the Naida is so much smaller and lighter!

Naida CIQ90 on top (Ruby Red) and my old Harmony CI processor on bottom — the Naida is so much smaller and lighter!

Oddly enough, the way the processors bring in sound when I first put them on is the biggest change for me between my old and new CIs. I had my Harmony programming (called a ‘map’) put on my new processors and it works really well, so things sound pretty much the same. I do find that I never need to adjust the volume with these processors; on my old ones, I usually had to fiddle with my right processor (my worse ear, the one that’s been deaf longest and has some high pitched electrodes turned off because they make me dizzy). I asked about getting specific hearing strategies put onto these processors (I have five slots per ear for different programs) and my audiologist told me that everything is pretty much automatic now. They’ve found that people really don’t like to have to switch programs for different environments, although that’s still an option for the future if I decide I want them.

Speaking of my audiologist, I just LOVE her. The whole clinic, actually. I’m going to the Audiology Clinic at Western Michigan University in Kalamazoo, a town I had never been to before my Nov. 30 appointment to have my new processors activated. I thought it was really far away but honestly, the drive is about as long as it took me to get to my Illinois clinic in Hinsdale … and the drive is a lot less stressful. I was always a bit uncomfortable knowing I had no audiologist in Michigan after we moved, and it’s a big relief to have that sorted out and to be working with someone who really listens to my feedback. It’s obvious that quality of life is important to her, and my visits have been helpful and informative. She even gives me encouraging feedback during those dreaded hearing tests, which makes them a bit less onerous.

The activation appointment was really not as big a deal as I expected it to be. I had two huge backpacks full of parts and accessories and the processor parts themselves, and I wasn’t sure what to actually bring. I ended up fitting just about everything (except the extra/backup parts and some accessories like the TVLink) into one backpack and I brought that, just to be safe. It took no time at all to put the programming from my Harmony processors onto the Naidas, and after that we just went over some of the basics (how to change certain parts) and how to pair the ComPilot to my phone and the TVLink.

The Phonak ComPilot almost deserves its own post, but I’m planning to write an entry focusing on music (which ties in to this topic) so I’ll just briefly explain what it is.  The Naida processor is Bluetooth-capable, and the ComPilot is a streamer that you wear around your neck so you can get stereo sound from things like cell phones, MP3 players, tablets, laptops and computers.  No more headphones!  I also use it with the TVLink device – again, it turns my CIs into wireless headphones and puts the TV sound right into my ears; there’s also a small clip-on mic that I can have someone wear so I can hear them better (a presenter/speaker in a seminar, a dining companion in a restaurant, etc). Although I do have to have the ComPilot hanging around my neck, it’s a far cry from the wires I used to have to use to get this kind of sound, and the quality of sound that I get is truly remarkable. It’s my favorite feature of my new CIs, by far!

When Things Come Into Focus

Every day I have a moment where I go from being deaf to actually hearing sound.  It’s not when I first wake up – my cochlear implant processors are nowhere near my head at that time. Generally I get out of bed, grab a couple of rechargeable batteries off the charger, carefully pick up my CIs (I’ve learned the hard way that the cord connecting the headpiece to the processor is fragile) and carry them with me to the bathroom. Sometimes I put my CIs on right when I get out of bed, but usually I wait until I’ve had time to fix my hair. That involves sliding my hands up under my hair, against my scalp, and shaking to get the curls going and fix any areas that got pressed down or wonky overnight. If I do that when I’m wearing the CIs, I basically would fling them right off my head!

Before I upgraded to the Naida Q90 processors, I had to brace myself for this moment. It’s overwhelming, going from total silence to a rush of sound all at once. My Harmony processors had a program called ClearVoice that would compress any steady background sound and kind of mute it. So if, for example, I had the fan on in the bathroom, my first sound would be the roar of the fan and then ClearVoice would kick in and the sound would get compressed down to a less overwhelming level.  If Dave were to come in and start talking to me at that point, his voice would be the main thing I heard and the fan would fade away to the background – hence the ClearVoice name. It helps you hear when background noise is present.

Even though I’ve had the Naida processors since the end of November, I’m still not used to the difference when I first put them on. I still inwardly cringe and wait to be bombarded with sound for that first few seconds before the compression program takes over. Now, though, what happens is this: I hear nothing for a second or two, and then I hear a beep. After that beep, I can hear. Generally I’m in a quiet environment so there’s not a whole lot going on noise-wise, but there’s always slight sounds happening even in a quiet room. It’s like everything gets clicked into focus, the difference between A and B in a vision exam where A is the blurry lens and B is the one that lets you read that last line on the eye chart.

But the way these processors activate each time I put them on is such a relief. There’s no overwhelming loud sound coming in first and then getting compressed. The first sounds I hear are already compressed. That alone is a huge improvement. But there’s also that beep, which (for me anyway) serves to prepare me for hearing. I focus on that and I know I’ll be hearing in a second. My little warning tone, I love it so.

(Nearly) Ten Years of Deafness

I haven’t posted in forever so I’m sure nobody’s reading this anymore, but for the first time in ages I actually have cochlear implant-related news.  In April 2018 it will be ten years since I went deaf (and ten years since I started this blog, geez).  I can remember getting my cochlear implants and thinking they were all I ever needed – I couldn’t imagine needing to upgrade. But ten years on, and I’m down to one headpiece that functions well, one that is okay for the most part, one that doesn’t work at all and one that cuts out every time I smile, turn my head, etc. (the cord is frayed and loses connection).  I think the only functioning T-mics I have are the ones on my two processors; the backups long since stopped working. And I received a letter from Advanced Bionics this spring telling me that my Harmony processors are now obsolete and no longer covered. When I called last year to get a replacement headpiece, I was told they don’t make that style anymore and I should really upgrade.

“Oh, I’ll wait until we move,” I said. “I want to see how our finances look at that point.” I had no idea how expensive it would be to upgrade, and it made me nervous. A house was more important to me than hearing at that point.

So now we have a house. (Yes! We bought a house in June, in Michigan. I really need to start writing here again.) My headpieces really started acting up, so I contacted Advanced Bionics with my long list of questions.  And I’m shocked to say that less than a month later, I’ve been notified that my insurance approved the upgrade, they are accepting my two backup processors as a trade-in to cover the 20% balance I owed (which leaves a big fat ZERO due) and my new processors are being shipped to me today!

I also had to find a new clinic since I haven’t been mapped since I lived in Illinois, so I’ll be going to Western Michigan University to have these babies activated and mapped. I can’t even tell you all the new features I’ll have – I’m getting the Advanced Bionics Naida Q90 in ruby red – so I have some learnin’ to do.

Advanced Bionics CI Q90

Isn’t she pretty?!

But I’m pretty sure I can listen to music wirelessly with the ComPilot (which I’ll wear around my neck) and Bluetooth technology. I used to have to hook all these wires up to have the music go right into my CIs, so I’m really excited about this!

What a difference (almost) ten years makes.  I’m still reeling.

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!

There Was an Old Lady Who Got a Tattoo

A while back, I casually told Paige that if I were to ever get a tattoo, I’d get some type of spiral.  “Something that symbolizes the cochlea, for my cochlear implant,” I explained.  Then I forgot about it entirely.

She asked about it again last month at Easter dinner, wondering if I was still planning to do it.  “Oh no!” I laughed.  “I’m too old for that kind of thing.  I’ll leave it to you kids.”

And then I kept thinking about it.  I started searching online for possible images, thought about the size and placement.  Originally I wanted it right where my inner wrist begins.  “I don’t know about that,” Dave cautioned.  (He has two tattoos, one on his right arm and, well, basically his entire back.)  “You’re going to see it all the time.”

“But I want to see it!” I argued.  Still, he had a point.  And there’s all those veins right there on your inner wrist; that would be painful, wouldn’t it?  So I decided maybe further down, my forearm rather than my wrist.

I came up with a rough idea of what I wanted, after rejecting a few things.  I knew I wanted it to be mainly black and then to gradually change to a reddish orange inside, to symbolize how my cochlear implant brings color to my world.  I knew I wanted it to be about the size of a quarter or silver dollar.  (Originally I wanted it teeny tiny, but I rejected that fairly quickly.)  And I wanted it to be kind of rough looking, not smooth, perfect lines.

After I settled on what, I started checking out where.  I read a lot of reviews and it didn’t take long to settle on a place called The Parlor Tattooing in St. Joseph, Michigan.  I liked the work that they did, the place looked clean and spoke to me aesthetically, and the reviews were all positive.  Dave called and they said I was welcome to come by for a consultation; because it was small, they might even be able to fit me in the same day.  Otherwise, they were booked out until June.

Oddly enough, I didn’t think too much about whether it would hurt.  I did do a search on the most painful places to get a tattoo, and one site said the wrist would be painful … as in, do that for your second or third tattoo, not your first.  Other people were like, “Eh, no biggie.”

So yesterday, April 14, I realized it had been eight years since I went deaf.  This used to be kind of a sad anniversary for me, but it doesn’t bother me anymore.  I used to feel like I was the only person who’d gone through this horrible situation but now I know that I’m one of many, and we all just do what we gotta do.  I have my CIs and I hear better with them than I did with hearing aids, after all.  Instead of being maudlin, I decided to have a strange man permanently ink my body to commemorate the day.  Why not?!

Now if you’re just a boring non-cool, non-hip person like me, going to a tattoo parlor is a little intimidating.  As we drove there, Dave asked if I was nervous.  “About getting the tattoo?  No.  I’m nervous about making small talk with the tattoo artist.”  Yep; other people worry about whether it will hurt.  I worry about whether I’ll be able to hear over the music and sound of the tattoo … machine? Gun?  And what will I say to this person I probably have nothing in common with?  Or will they even talk to me at all?

shop

We got there about 20 minutes after they opened.  I wasn’t sure I’d actually get a tattoo, but I figured I’d at least find out how much it cost and set up an appointment.  The shop itself is really cool; lots to look at, the kind of color and décor that I usually gravitate to.  There was a very tattooed, pierced, bearded guy standing outside when we walked up, and he nodded and smiled at us.  Then he followed us inside and asked if he could help us.  I explained what I wanted and he said, “You know, I can do it right now if you want.”  No turning back now.
The image I started withI showed him the image on my phone, and then came the scariest moment of the whole experience.  “Oh yea, just email that to me,” he said casually as he handed me a form to fill out.  “Oh fuck,” I thought.  How do I email this thing?  I’m not to the point where I’d try to text using my calculator or anything, but I don’t just casually email random images to people either.  I nodded slowly as my brain frantically ran through the possibilities.  I touched one button on my phone and … yea, that’s not the right one.  I glanced around casually, hiding my panic as I tried to figure out how to do this without looking like an idiot.  Finally I found the right button, clicked on Gmail and looked up at him.  “Oh here, I’ll enter my email address while you fill that out.”  He took the phone and I breathed a sigh of relief.

The transfer

In case you’re wondering (I always did), they make a transfer of the image you want.  They put it on your skin and then use that as a guide when they do the actual tattooing.  “Do you want the edges rough like this?” he asked.  I confirmed that I did, and he agreed that it looked better that way.  Then we talked about the color.  I was under the impression that switching colors was a big deal, so I was only planning on getting two colors.  But he suggested having the color gradually go from dark red to orange, which I loved.

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The whole thing lasted for maybe 40 minutes, and it never became painful.  (The whole visit, from when we walked in until we walked out, took about an hour.)

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And you guys, this kid was so nice and friendly. (If you ever go there for a tattoo, ask for Preston – you won’t be disappointed.)  We chatted the whole time, and even Dave chimed in from the couch he was sitting on.  There were three guys working there and they were all like that – friendly and open.  The whole shop had a very casual, non-judgmental vibe.

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I also noticed that every single client was a woman.  There was a younger girl in her 20s getting her shoulder  or upper arm done, me, and then someone a bit older (but younger than me) getting a tattoo on her ankle.  I thought that was pretty cool – girl power and all.

So it’s done, and I absolutely love it.  I do have to say that it takes some getting used to, because it’s a tattoo that I can see as opposed to something on my shoulder or something, where I’d have to use a mirror to see it.  Yesterday I’d move my arm and think, Oh my god, what is that on my arm?! before I remembered, Oh yea … tattoo.  In the winter I’ll rarely see it unless I push up my sleeve, but it will definitely be on view in the summer months.  Since it’s on the inside of my forearm it’s not quite as noticeable, but it’s very colorful and it’s not small.  The important thing is that it’s exactly what I wanted, and it has a lot of meaning for me.  I smile whenever I see it.  If somebody else doesn’t like it, they can take a hike, man.

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Dave talked to my mom last night and he told her to sit down before he broke the news.  (I figured she’d be upset about it.)  Instead, she said she’s been thinking about getting one on her shoulder.  I think I know just the place to take her the next time she visits.  🙂

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.

Time Flies When You’re Having Fun

I like to do this thing where I think ‘At this time last year, I was …’. It’s kind of amazing to look back and see how much things change in a year or five years or whatever. Dave and I were talking about this today because seven years ago at this very moment, I was in the recovery room at the hospital. This day marks seven years since my bilateral cochlear implant surgery.

Seven years ago, Eric was just about to enter college and Paige was just about to enter high school. How weird is that?

Dave reminded me that August 21, the day after I was activated, was the day we moved Eric into his dorm. I remember that like it was yesterday; I could hear sounds, but everything was weirdly robotic and voices were still very strange-sounding, especially the voices of Eric’s roommate and his family. I remember listening to the rhythmic sound of the car tires on the expressway until the sound made sense to me; same with the sound of the turn signal clicking.

So much has changed in seven years. I didn’t know back then whether the surgery would even work, and I wouldn’t hear sound again for another month. (Activation was a month after surgery, after I was mostly healed.)

My Advanced Bionics Harmony cochlear implant processor and headpiece

My Advanced Bionics Harmony cochlear implant processor and headpiece

The processors I wear (Advanced Bionics Harmony) are old news now, even though they were the latest and greatest when I got them. Since then they’ve introduced the Neptune (an off-the-ear, waterproof processor) and the Naida. I still follow the boards on Hearing Journey and offer support/mentoring to people who are curious about getting a CI, but I really can’t offer hands-on experience with the newest technology … and that’s a strange feeling. I might look into upgrading once we move and I know what our financial situation is going to be, but right now every spare penny gets saved for our future home. My Harmony processors are working fine for now (the rechargeable batteries are getting a little worse for wear though; I might need to buy some new ones).

I haven’t really been writing here that much lately. It’s not like anything bad is happening; summer is here and things are going along just fine. A couple of times I started to write a blog post and then got a sense of déjà vu, like I’ve written about the subject before. A quick search then shows me that yep, I wrote about that exact subject two years ago or whatever. I’ve gone through these periods before and I’m sure it’s just temporary. For now I’ll try to pop in and say hey even when there’s not much to say … and eventually I’ll be writing like crazy again.

So here’s to the next seven years – hopefully by then I’ll look back on this post and think ‘Wow, I was still using Harmony processors back then!’

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!

 

Re-post: Being Bionic

It’s been about two years since I first posted this, and I thought I’d re-post for those who haven’t seen it before:

I realized the other day that there’s a lot of things about having cochlear implants that I assume everyone just knows. When I first started this blog, I think my main ‘audience’ was other people with cochlear implants or who were considering one. As the years go by that’s no longer the case, and there are certain questions that I frequently get asked, so I figured I’d write a little bit about being bionic.

Just as a quick refresher, for anyone who doesn’t already know, I am profoundly deaf. I lost my hearing three separate times during my life, for reasons nobody has ever been able to figure out. So I didn’t grow up deaf (I wore hearing aids). When I lost my hearing the third time, in April 2008, it left me with no usable hearing – I don’t respond to anything on hearing tests, and there is nothing that I hear, even with hearing aids.

I received a cochlear implant in each ear in July 2008. Instead of thousands of little hairs in my cochlea waving around and helping me to hear, I now have a teeny strip of 16 electrodes that do the job. The sound is interpreted by my brain after it’s routed through an internal micro-computer to the electrodes. The signal is transmitted via the headpiece/antenna connected to a processor (also containing a micro-computer) that I wear on my ear; it looks like a big hearing aid. There’s a magnet inside my head, and there’s one in the headpiece that is attached to my CI processor via a wire. The magnets are of opposite polarity. I put the magnet headpiece up to my head, feel around until I can feel the magnet pull, and let go. It clings to my head via the magnet in my skull. Here’s a couple pictures:

My Left Side CI (purple metallic color) My Left Side CI (purple metallic color) A better view of the processor on the ear. A better view of the processor on the ear.

So that’s what I mean when I talk about “having CIs.”

I didn’t have brain surgery. I won’t get graphic (because I don’t know enough to!) but basically they make an incision behind your ear, along the curve, and then (for me, anyway) up and back a bit. They thread the electrodes into the cochlea and they shave/drill some of the skull to fit the magnet/radio antenna component, which is a couple of inches up and back from the ear. (I think this is slightly different for everyone, based on skull thickness.)

When I attach the magnet, it doesn’t hurt; I don’t feel anything at all. Once it connects, there’s a pause and then a woosh of sound as I begin to hear. (If the magnet is not attached, I don’t hear at all.) Now that I have a program called ClearVoice on my CIs, there’s another change as any loud, steady background noise (fans, etc.) gets suppressed.

If I run my fingers over my scalp, I can feel bumps – very, very slight on the right side and very, very noticeable on the left side. They did shave a bit of hair for the surgery, right behind my ear. Since my hair is long, it covered the shaved areas pretty well. For about 6 months after my surgery, I had my mom (a hair stylist) and my husband use clippers and keep the hair trimmed where the magnet connects. Your head stays swollen for quite a while and the less hair in that area, the better the magnet can connect.

I don’t wear my CIs in the shower and I don’t wear them to bed. I usually take them off if I’m going to nap, because the magnets get knocked off anyway when I lie back. I can get my CIs slightly damp (I don’t freak out too badly in the rain) but they aren’t waterproof like a newer offering from Advanced Bionics, the Neptune.

I find it really difficult to do anything that requires lying back if I have my CIs on. The weight of the processor pulls it off my ear and if the magnets bump into anything, they slide off. This makes going to the doctor and the dentist a bit of a challenge (especially the dentist), and makes things like yoga and sit ups fairly tricky unless I take my CIs off. I have a contraption that helps keep the processor on my ear so I can use that, but after a while it makes my ear ache…plus it’s really hard to put on!

Because I don’t sleep with my CIs on, it’s a catch-22. It’s very easy to sleep because I hear nothing at all, hence nothing wakes me up … but it’s hard to wake up if I have to be up at a certain time. I use an alarm clock that can do a few things: it can connect to a light and flash it to wake me up (this would never, ever wake me up), it has a very loud alarm that can be made higher- or lower-pitched (this would never, ever wake me up), and it connects to a little disc that you can slip under your mattress or pillow, which vibrates/shakes the bed when the alarm goes off. THIS wakes me up. Boy, does it wake me up!!

The cochlear implants didn’t cure my deafness; I will always be deaf. Thanks to my CIs, I have a foot in the hearing world and a foot in the deaf world, which is pretty cool.

My CIs use rechargeable batteries. (This is different by brand – I use Advanced Bionics CIs.) There are two sizes – a smaller SlimCel and the larger Plus, which lasts longer. I started out with the Slims because the Plus size was too heavy for my ear, especially while I was healing. After a while, my left ear was able to handle the Plus size but up until about a month ago, I wore mainly Slims on my right ear. Now I just use a Plus on each ear, and the batteries usually last me the entire day. If I’m staying up really late, I might need to switch them out. With the Slimcel, it was getting to where I had to change batteries at least once, sometimes twice. (I need to get new batteries, since these are now four years old!) I keep two backup batteries in my purse, and I have four on my charging station that are always ready to go.

When my batteries die, there is no warning. With hearing aids, I could usually tell when the battery was about to go…my hearing would get slightly worse. Now, you could take the CI off, slip the battery off and then back on, and see how many lights flash on the processor. (Four lights means it’s fully charged; one means it’s almost depleted.) But as far as just wearing it and having the battery die, it just goes. I mean, one second you hear and the next you don’t. It’s a little weird, but I’m used to it now.

The CIs have enabled me to hear things I didn’t hear with my hearing aids. Before I lost all my hearing, I wore bi-CROS hearing aids because my right ear was completely deaf. So I wore a ‘transmitter’ on that ear, which looked like a regular hearing aid, and it wirelessly transmitted the sound coming in on that side over to the hearing aid I wore on my left ear. Now I actually hear things in each ear, which took some getting used to. I always used to position people on my hearing side, the left. It took a long time to stop placing myself in position to hear (sitting or walking with people to my left, that is). I never used to be able to tell what direction sound was coming from. It took about two years to start to really be able to do this with my cochlear implants, but now I can often discern which ear “heard” the sound. It is very, very cool!! I also hear more high-pitched sounds, things I never knew even made noise…like bubbles popping, for instance. I have still never heard a mosquito or fly buzz. I suspect my hearing loss is such that I just will never hear that.

I do have some electrodes in the higher pitches completely turned off (two or perhaps three). This is different with everybody – we all have different reasons for our hearing loss. When I hear the higher tones, it makes me very, very dizzy. I can’t tolerate it at all. I think this is probably why I have trouble on the phone. Many people with CIs use the phone, but for me it is very difficult. I can understand computer voices (the voicemail menu, for instance) but when a real voice kicks in, I often struggle to comprehend what I’m hearing. I have a phone that captions the conversation on a screen for me. There’s a bit of a delay, and many times the words are captioned incorrectly, but it’s definitely better than nothing! I can handle a very short conversation but I no longer use the phone about 95% of the time. I stick to texting and email. I think missing those higher pitches makes it harder for me in that situation, since that’s what helps us understand voices.

Same with the TV – I do still need captions when I watch TV or movies. It’s hard to explain, but unless I can see a face and read lips, it just sounds like…sound. If it’s very quiet, the person is not speaking quickly and their voice is very clear, I can sometimes follow along. But there’s almost always some kind of other background noise – music, laughter, gunshots, what have you — that get in the way of understanding what I’m hearing.

I’m not disappointed by this, or apologizing for it. I mean, my gosh—I’m deaf, hearing via a little computer I wear on my ear, and I can talk a bit on the phone and hear music, television and movies. So I still need some help with captions – so what? I was going to be happy even if all I heard was environmental sounds…anything other than 24/7 tinnitus and no real sound other than the crazy noises in my head. So I’m extremely pleased, thrilled even, to be watching TV with captions and cautiously, sparingly, using the telephone.

After I had the surgery, I could not hear. I had to wait a month before I wore the external parts (the processor and magnet headpiece) and got them ‘activated’ so I could hear. This is different with every CI clinic; some places do activations a week after surgery, some wait longer than a month. I was glad to wait a month because my ears were definitely too sore to wear the processors before that. I really did need that time to heal. My skull was still swollen even a month later and I had to use really strong magnets to keep the headpieces in place (I’ve since switched out to lighter magnets).

To activate the CIs, the audiologist will hook you up via a cable to his/her computer. (They take the battery off the CI and replace it with the cable.) You listen to beeps and tones and tell them what sounds most comfortable. At first it all sounds weird and robotic; some people just hear beeps instead of actual sound. As days go by, your brain adapts and you begin to hear things in a more normal way. Voices sound strange, like Darth Vader or the chipmunks.

I go back periodically for “mappings,” where I get connected to the computer and the audiologist adjusts the volume and fine-tunes electrode-related things. In the beginning I went every week, then every month, every 6 months, every year…now I just go when I feel I need an adjustment because my hearing seems off. I can get future improvements via the computer programs they put on my processor, without having my internal component replaced.

The surgery usually makes you lose whatever residual hearing you had. This was not an issue for me – I had no hearing to lose – so being deaf during recovery was just more of the same. But you don’t have to be completely deaf to get a CI – you just have to score low enough, wearing a hearing aid, on the hearing test. (How low your score needs to be depends on insurance and/or the clinic.) It used to be that you had to be pretty much deaf to get one, but over the years that threshold has changed and now there are many people who still have hearing and get a CI in order to improve upon that hearing and be able to hear voices again. There are many people who have a CI in one ear and wear a hearing aid in the other. Incidentally, Dave has looked into getting a CI because he is completely deaf in his left ear and wears a hearing aid in the right. He gets his medical coverage through the VA, and right now he tests too well with his hearing aid on to qualify for a CI for his left ear.

Styling my hair can be a little bit of a pain – I have this cord running from my ear back a couple inches on my head to the magnet. I can’t run my fingers through my hair to fluff it up or smooth it out without catching on the wire. I take my CIs off to style my hair, and I have to be careful when I put them on to keep the wire from flattening a big section of hair. (This is a girly thing…I’m sure guys don’t have this problem!)

View from back, wearing both CI's View from back, wearing both CI’s

I don’t try to hide my CIs. I think they’re really amazing and I like to show them off. I very rarely get asked about them. I never notice people looking at them although Dave has said he’s seen people behind me looking at my head (I have colorful covers on the magnets). Only once have I had someone ask me about them; it was in Target, and a lady walked past me and then doubled back. She asked if I had cochlear implants and we began talking; it turned out that her daughter had a CI as well. I also saw one guy with a CI at my daughter’s school her senior year. (She won an award and they had a breakfast for the kids and their families.) Afterward, when people were mingling, I saw him talking to somebody and it was very easy to see his CI. When there was a lull in the conversation, I went over to him and we talked a bit about our CIs. I never did this with people who had hearing aids! 🙂

I just realized how absurdly long this is, so I’ll wrap it up. I know I didn’t cover everything, so if anyone is reading and has a question about what it’s like to have CIs, I’d be happy to answer (if I can…I’m not really up on the technical aspects of things, for instance).

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