Category Archives: Cochlear Implants & Hearing Loss

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).

Cell Phones and Me, A History

I’ve never been much of a cell phone person. The first one I remember buying was for our honeymoon in 2002. We paid $100 for a phone that was supposed to be hearing aid compatible (it was also supposed to have a $100 rebate, which they DENIED for no reason – that still pisses me off). We brought a neckloop and tried to use the phone to call the kids. We never could get it to work – I couldn’t hear anything on it (and I used to use the phone regularly back then, when I still had some hearing). I don’t remember if we ever actually used that phone, although we did hold onto it in case we needed it in an emergency.

I think I gave up the idea of a cell phone until 2008, when I went deaf. Everyone else was getting obsessed with them but we were holdouts. Even my kids didn’t get cell phones until then – Eric bought his first cell phone with his own money in 2008, when he was a senior in high school. I think Paige might have gotten her first phone that year too – my mom bought it for her to use when they went on a cruise together.

Once I lost my hearing, I decided I needed a phone I could easily text with. I got a Virgin Mobile WildCard with a slide-out keyboard, and boy did I think I was something special. It was great, though – I mainly used it to keep in touch with the kids, and it was so helpful. I never used it to talk but Dave did on occasion. It was a pay-as-you-go phone so I had tons of minutes built up on it.

Eventually I found out about Sprint’s plan for the deaf and hard of hearing, which was $29.99 for unlimited data and texting. I upgraded to a Blackberry Curve and gave Paige my old phone (and all those minutes – which didn’t last long for a teenage girl). There was no phone call component to the Sprint deaf plan and that suited me just fine; in fact, incoming calls were actually blocked.

Then while I was merrily texting on my Blackberry, smartphones got popular. Everyone was swiping and tapping and phones were getting bigger instead of smaller. I decided I wanted a smartphone, but I didn’t want to pay the upgraded Sprint deaf/HOH plan price (at the time, it was an extra $10/month). I just didn’t use my phone enough to justify spending $40 plus tax. The Samsung Replenish, though, was a smartphone that didn’t incur the extra $10 charge. It was cute, with a keyboard like my Blackberry and a touch screen. I went ahead and upgraded but kept my $30/month plan for unlimited text and data.

It didn’t take long to realize the Replenish wasn’t much of a smartphone. It had very, very little memory and you could put maybe one or two apps on it, but that was it. Even using an SD card didn’t help. Dave hacked the phone, putting on a new kernel so I could put things on the SD card instead of the phone. (That’s a very basic way of explaining what he did – I have had to stop and ask him three times just to complete that sentence.)

By now the whole world was looking at their phones instead of their surroundings. Because my phone sucked, I still never got pulled into the cell phone obsession. I used it when I needed to, but most of the time I forgot it at home. I also turned it on maybe once a week. When I did finally turn it on, I’d have messages from people that apparently were sent days before, and I’d have to explain that I’d just turned on my phone and saw their message. I felt like the only person alive who didn’t keep their cell phone on all the time.

My plan with Sprint was up right about the time we moved here to Michigan. I really wanted a real smartphone but I couldn’t stand paying $50 a month when I was sure I wouldn’t use it that much. Dave did some research and found Republic Wireless. They had just released their Moto G and he liked the looks of the phone, so that was my birthday gift. Even better, the plan I picked was cheaper than the Sprint deaf/HOH plan — $25/month for unlimited calls, text and data (over WiFi and 3G network).

So I’ve been using my phone for almost six months now, and I love it. I still don’t find myself obsessed with the phone, but I do turn it on every day and most days I remember to take it with me when I leave the house. I haven’t had any problems using it – the service is great. I do find it very hard to hear on this phone, though, so I still really don’t use it for making phone calls. (Dave also finds it hard to hear.) I know they have apps that caption cell phone calls but I don’t really get how they work. I assume you have to use the phone on speaker mode so you can look at the screen to read the captions – I don’t want everyone listening to my conversation, sorry. I think you also have to get a special phone number for people to call so that the incoming call is captioned – something that just seems like a huge pain to me, especially when I barely remember my regular cell phone number to begin with.

Speaking of my cell phone number, I have two of them. Oddly enough, even though we bought this phone online when we were in Michigan, my phone number area code is the same as my area code was in Illinois – 630. It makes no sense, but I didn’t complain. So I have this 630 phone number, but a few days after I got my phone I started getting calls from numbers with a 269 area code, which is the area code for where I live now. Then I started getting Facebook notifications about engagements and whatnot for people I’d never heard of. A few times people would leave voicemails – I’d have Dave listen to them and they were usually from guys and usually about stuff that was for sale.

I figured I must have somebody’s old phone number, but how weird that all these people from my current 269 area code were calling a phone number in the 630 area code.

Last month I got a text from a guy wanting to know if it was still okay to go hunting in my backyard. “Nobody was home,” he wrote, “so I just wanted to check first.” I assume he meant this guy’s backyard and not mine, since I never heard any gunshots (and my backyard is big but not that big). I debated whether to text him back but in the end I didn’t. I did, however, do some more digging around and I found out that there’s a reason I was getting these weird calls and texts. My phone actually has two phone numbers, one for WiFi (which is the one I use) and one for the cellular network. This is how Republic Wireless explains it:

Every Republic phone has the Republic number that you know and give to others.  For those with cell service plans, there’s a second number that’s required and used behind-the-scenes to receive calls when Wi-Fi isn’t available.  You don’t normally need to worry about the Sprint number unless you’re receiving unwanted texts or calls because it was recycled from a former Sprint mobile customer.

So there ya go. I followed their instructions to find my Sprint number and it didn’t work – the phone was all, “Yeah, I can’t complete that number as dialed, sorry.” But one day, by accident, I noticed that when I turned the phone on for the day and quickly checked my phone number, it showed the 269 area code Sprint number. I guess it just shows while the phone is starting up, because once it finds our WiFi signal the phone number changes to the one I know and use.

Things seem to have slowed down with the unwanted calls and texts, but if it doesn’t stop eventually then I can ask them to change my Sprint number (and hope the new one doesn’t give me the same issues). Meanwhile, last night I turned on my phone (yes, I still forget to do it in the morning sometimes) and I had a missed call from an unknown number, and three text messages from a different unknown number.

The three messages were really one long message, from a woman who said, “You took Lila from me in 2012.” I saw that and big red flags went up – this guy stole his kid from her mom?! I kept reading and she said that her daughter wanted an update, and if he still had Lila to please let her know. I showed it to Dave and his first impression was the same – stolen kid. Then I said, “I think this is an animal, a dog or a cat. She said her daughter is asking about her.” So I wrote the lady and tried to explain the mix-up with the phone number. We had a nice conversation and ended by wishing each other Merry Christmas. I hope she finds her dog (the old owner of my phone bought the dog from her and used to send updates, but apparently has stopped).

It’s kind of interesting getting a glimpse into this guy’s life. I know his name now, from the lady who texted last night, but it’s so common it’s impossible to really find him. Not that I’d really know what to say. “Hey man, could you update your phone number on Facebook and take down your Craigslist ads and tell your friends they can still hunt in your backyard but they can reach you at your NEW number?”

I don’t know – I’m kind of curious to see what happens next.

The Joy of Conversation

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

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

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

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

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

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

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

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

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

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

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

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

Hearing Things

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

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

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

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

“Bleh, bah de hop der.”

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

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

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

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

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

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

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

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

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

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

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

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

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

Good job, The Good Wife!

Allergies, Eyes, Candy (aka Lazy Post Title)

Dave finally had his appointment at the South Bend VA Clinic and folks, we have a winner! We both liked the doctor (actually a FNP) and the clinic itself. Now that’s he’s official there, with a provider and everything, he can go there for minor illnesses and either just walk in (although he may not get to see his regular doctor) or call the day before and make an appointment for the next day. That was our biggest concern.

He does still have to drive the two hours to Fort Wayne, IN if he needs to see a specialist or to go to the VA emergency room. (If he’s having a heart attack or a truly emergent situation, he can go to the hospital here in town and let them know he’s a VA patient.) We are still getting used to the fact that we can’t just drive 45 minutes to a VA hospital like we did in Illinois, but I guess we have to live with it if we want to keep living in this area (which we do). The other option is to eventually buy a house closer to Ann Arbor, which has a really good VA hospital, but then we’d have a 4-1/2 hour drive back to Illinois. No thank you!

Dave was diagnosed with seasonal allergies and now he’s trying allergy medication to see if it helps with his cough. It’s not as bad as it was, so he might be on the right track. It does make sense, since we are surrounded by trees and new plants here.

I saw a new eye doctor on the same day Dave had his VA appointment, and I really like the new place. It’s kind of a pain having to find all new doctors, so it’s a relief to find someone I like right off the bat. Getting my eyes tested makes me feel very vulnerable; I am terribly nearsighted (my prescription in both eyes is -8.50) and when I take off my contacts for the exam, I can only see blurry shapes. I depend a lot on lipreading with new people, so it makes me very nervous when I can’t see. On top of that, the doctor is usually to my side giving me instructions as I look through the various lenses for the test.

I explained my hearing to everyone I had to deal with, and I had NO problem understanding anyone. I know my CI hearing is really good, but I still get nervous when I’m put in an unknown situation where I’m not sure how loudly/slowly someone speaks, if they have an accent, etc.

So I’m testing some new contacts now — I still use and love bifocal contacts, but I’m trying out a stronger prescription for the reading/up close stuff. Otherwise my prescription didn’t change, which was kind of nice. For a week and a half I’m trying out a mid-level bifocal in my left eye and high-level in my right, and then the next week and a half I’m wearing ‘high’ in both eyes. So far I can only really tell a difference when I’m watching TV — the mid level seems to work better. It’s only been a day though, so I’m curious to see if eyes adapt the way ears do when we get new mappings.

When I go back in three weeks, I’ll give my doctor my final choice as far as contacts go and then she’s going to dilate my eyes. When I told her I’d never had them dilated before she was horrified; I guess when you’re as nearsighted as I am, it’s common to have problems that would show up with that test. Of course, I came home and Googled and now I’m terrified she’ll find retinal tears and holes when she does the test. The thought of having procedures done on my eyes makes me feel faint, so I’m trying not to dwell too much on the what-ifs because otherwise I’ll make myself crazy (er, crazier).

Halloween is Friday and alas, Dave is certain we’ll have no little trick-or-treaters at this house. He thinks we’re too far outside of town. On top of that, it’s going to be cold (in the 40s) and possibly rainy, so any kids we might have gotten may choose to stay home. We did buy two bags of candy, just in case. That’s one of the mysteries when you move — how many kids will you get at the new place on Halloween? I suspect we’ll be eating a few M&Ms and Snickers bars on November 1st.

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