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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.

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).

Safe and Sound

We’ve been watching the news out of Oklahoma with heavy hearts – the images of the destruction caused by the tornado are almost impossible to comprehend.  I can’t help imagining how scared the kids in those elementary schools must have been, and how absolutely terrified their parents must have been as they waited to find out if they were okay.  My heart goes out to everyone who lost property, suffered injuries or worse, who had to endure the storm not knowing whether they would survive.

Here in Illinois, we get some wild weather at times but mostly in the form of thunderstorms.  We’ve never had a tornado in our town; we had that derecho last summer which was scary and knocked out the power for three days, and I remember one instance when Eric was a baby (in the summer of 1990) when there was a bad tornado not that far from here.

We have a lower level with a full bath, so I imagine that’s where we’d go if a storm was in our path.  I worry about the cats, of course, because only one of them is tame enough to catch and put in a carrier; the other three we would have to try to herd down into the lower level with us and then pray for their safety.  But if a tornado blew through our neighborhood in the middle of the night, let’s be serious:  we would stay asleep until it lifted us out of our beds.  Well, Dave might hear it, hopefully in time for us to move to safety.  But we would never hear our town’s tornado siren; we are lucky to hear it when we’re awake and have our hearing instruments on!

I’ve been working toward making things a little more safe for us at night, when I have my cochlear implant processors off (and I’m completely deaf) and Dave has his hearing aid off (and he’s got a severe to profound hearing loss).  Previously, the only alerting device we had in our bedroom was my Sonic Alert alarm clock.  It has a vibrating disc connected to it, which you slip between your mattress and box spring (or under your pillow, if you really want to scare the bejesus out of yourself in the morning).  It will vibrate the bed when the alarm goes off, and it will also alert you to the phone if you have the phone connected as well.  We don’t have a phone in the bedroom (and our phone service is through our cable) so we can’t use it for that.  At least we have a way to wake up on time!

I knew we could do better, though.  There are all kinds of systems out there for the deaf and hard of hearing which will alert you to all manner of things:  doorbell, baby crying, smoke detector, etc.  We have a smoke detector (one of three) right outside our bedroom door, but would it wake us up at night if there was a fire?  Hell no!  Well…again, it might wake Dave up since he has some hearing left.  But it definitely wouldn’t wake me up.  Some fire departments give out smoke detectors with a strobe light for the deaf/hard of hearing.  After exhaustive research, I couldn’t find one in our area and once I realized that the only alerting mechanism was a strobe light, I knew it wouldn’t help me anyway.  It might help if I happened to be awake and looking in the general area of the smoke detector when it went off, but otherwise it would never wake me up.

I started looking into these all-in-one systems and just about fell over from sticker shock.  They range in price from about $190 up to many hundreds of dollars.  I guess they assume that everyone with a hearing loss also has a lot of money!  Yes, we want to be safe but we also have to be able to afford the equipment.

There’s a place in our state (Illinois Assistive Technology Program) that will loan, for free, all kinds of equipment to people with various disabilities, hearing loss included.  However, the loan is only for five weeks and then you have to return it.  It’s a “try before you buy” kind of thing.  It’s awesome if you have a short term need, or are really planning to spend big bucks on something and want to be sure it will be helpful before you spend the money.  But it’s obviously not a long-term solution.

I decided to fall back on my main avenue for items I can’t afford at full price:  eBay.  I searched for three different popular, recommended alerting systems to see if any were available at an affordable price.  I lucked out in my search for the AlertMaster AM6000 unit.   It’s normally sold for $180 and I was able to get it for $19.95 on eBay.  It comes with a wireless doorbell and a bed shaker along with the base unit.  It also functions as an alarm clock.

You can have the system alert you to things like a baby crying, a smoke alarm (or other audible alarm that continues for at least 12 seconds), even a motion detector.  The problem is, all of these things are separate transmitters that cost about $50 each.  You could easily spend more than $400 on the base unit, all of the transmitters and a pager that you can wear in order to be notified all around your home.

Our main concerns were the smoke detector and the doorbell.  I figured the doorbell alert came with the base unit, so all I’d have to do is save for the audio alarm transmitter (for the smoke detector).  After we took a look at the unit, though, I realized I had been imagining that it would somehow alert us to the doorbell we already have.  We can hear the doorbell just fine during the day, but if someone rings the bell at night (and it has happened before) then we have no idea.  This unit, though, gives you a whole new wireless doorbell that transmits to the base unit.  When someone rings that doorbell, it will shake your bed and/or turn a bedside light on and off.  That doesn’t help us during the day – if we replaced our current doorbell with the new one, we’d never hear our doorbell ringing!  Unless we happened to be lying in bed in the middle of the day, we’d never know there was someone at the door.

We puzzled over this for a while, and then I got the bright idea to have the audio alarm situated between our doorbell chime (in the hallway, by the smoke detector) and the smoke detector.  I figured it would alert us to both the sound of our regular doorbell and the sound of the smoke detector.

We set the base unit aside while I went back to eBay, searching for an audio alarm transmitter for a decent price.  Just by luck, I found someone selling a “Doorbell Notifier” that had the same item number as the audio alarm I needed.  I had a suspicion they didn’t really know what they were selling.  But it was only $9.95 with no bids, so I put in a bid and crossed my fingers.  A few days later, I won the auction and the audio alarm arrived quickly in the mail.  I opened it up and yep…it was the exact transmitter we needed!

We started testing it out and it would just NOT notify us when the doorbell rang.  We could see lights flashing on the transmitter so we assumed it wasn’t defective, but we were really puzzled.  Finally we decided to try it with the smoke detector and see if it detected that sound.  Sure enough, our bed started shaking and the light on the base unit flashed.  I took another look at the manual and noticed it said it would alert for any sound that lasted consistently for 12 seconds or more.  It doesn’t sound like much, but 12 seconds is actually a long time for a doorbell – ours rings just for a couple of seconds.  There was no way it would ring long enough to set off this transmitter.

Dave finally suggested that we put the new doorbell out near the original doorbell, with a sign.  I didn’t want to say something like, “Deaf occupants – please use this doorbell at night” because that would be like saying, “Deaf occupants who can’t hear you, so go ahead and rob us blind while we sleep!”  Instead I just made a small sign:  “Please use this doorbell after 10:30 p.m.”  If I saw something like that, I would assume there was a baby or small child inside and it was a quieter doorbell (or something along those lines).  In any case, the chances of this doorbell being used are pretty slim, but at least we have it out there so the police won’t break down our door if they come calling again at 2 a.m.  (Long story – a misunderstanding regarding my daughter Paige, but it was definitely not an experience we want to repeat since they were NOT happy that it took us so long to answer the door.  Our now-deceased dog was the one who finally alerted us.)

I was thinking we did a pretty good job of securing our overnight safety at a reasonable price, but now I’m wondering if we should look into a storm warning system.  On the one hand, we get lots of weather alerts in the middle of the night for thunderstorms and I definitely wouldn’t want to be woken up for those.  On the other hand, if we have a tornado in the area, I would prefer to know before it bears down on us while we sleep.  Looks like I have a bit more research to do!

Live and Learn

When I was in high school, I worked as a cashier at Venture for about a year and a half.  Venture was a store similar to K-Mart, your basic discount department store in the Midwest.  This was back in ’81-’82, and the stores didn’t have scanners – we had to key in three sets of numbers for every item (department, item class and price).  On top of that, the cash registers had no numbers on them, just blank white keys, meant to encourage us not to stare at the register but to look at the item and quickly key in the numbers on the price tag.  (That scared me almost as much as the phone!)  If a customer presented a credit card (and that was rare back then; most people used cash or checks) then we had to drag out the knuckle-buster and a credit slip, write all the information down, and call the charge in if it was over $50 (my biggest nightmare).VentureSign

I got really good at the cash register part, and I was quick and efficient, moving my line along at a brisk pace.  I usually had no problem understanding people, between my speech reading skills and my hearing aid.  Back then, I had a moderate-severe loss in my left ear, and a severe-profound loss in my right ear; I wore one hearing aid, in my right ear.  The biggest issue I really had was with the phone, which had no amplifier.

If I had to call in a charge, I never knew if I would be able to understand the person on the other end.  Many times I had no idea what they were saying, but I got used to the questions they would ask so I would throw that information out there and hope it was what they needed.  At least half the time I couldn’t hear the confirmation number they gave back to me; I’d just write down a bunch of numbers on the slip that sounded close to the noises I was hearing on the phone.

As a side note, I always looked for jobs that involved little to no phone use (I still do that even today).  When I chose a cashier job, it never occurred to me that there would be a phone involved.  I figured I couldn’t ask for a special phone and never bothered to even mention my difficulties to my boss.    Although I kind of enjoyed the cashier aspect of the job, I would probably never go back to another cashier job because of the phones (and now those walkie-talkie things that everyone seems to use – those are a million times worse than the phone for me).  Kind of a bummer because I’m looking for something very part time, just to bring in some extra money now that the business is slow, and it is hard to find something that doesn’t involve a lot of phone use with the skills I have (mostly office work).  Between my phone phobia and my difficulties on the phone, I have no interest in using the phone at work – it stresses me out way, way too much.  I can get by with a captioned phone, but I still would not want a job that had me using the phone very frequently.  It’s going to be a long job search!

Getting back to my job at Venture…one day a lady came in, and I can’t remember now if she was alone or with somebody else, but I think she was alone.  She told me she was deaf.  And that’s all she said:  “I’m deaf.”  It froze me completely.  I was terrified!  I didn’t know sign language, didn’t know anything about deaf people or how to communicate with them.  For all I know, she might have been able to hear a little bit; in my mind, ‘deaf’ meant completely devoid of hearing, no sound getting through at all.

I just smiled and nodded, didn’t say anything, and rang her purchases up.  The whole time, I was slightly panicked, wondering how I was going to tell her the total of her purchases.  I had no idea if she could lip read, I had no idea how to communicate with her at all.  I believe she moved around so she could see the total on the cash register, then she paid and that was that.  But all these years later, I still remember how freaked out I was to have someone tell me they were deaf…even though I also had a hearing loss!

Now that I’m deaf myself (and hearing with CIs), that always stays in the back of my mind if I identify myself as deaf to somebody.  I never, ever just say, “I’m deaf” and leave it at that.  I follow up with, “I read lips and I have cochlear implants.”  Depending on the situation, I might also let them know that I’ll say something if I’m having trouble hearing.  Usually I just like to throw it out there if the situation warrants it, so they don’t think I’m either rude/ditzy/clueless/stupid if I don’t respond appropriately.  I always say that I’m deaf, though, because I am and also because it seems to catch people’s attention more than “I have a hearing loss.”  People tend to be more careful about looking at me when they know I’m reading their lips; if I just say that I have a hearing loss, most of the time they talk with their head turned and/or talk too quietly or too fast.

Hopefully I’ve never elicited the same amount of fear in somebody that I had that day I met my first deaf person.  Part of it was my young age and inexperience; part of it was her lack of information.  Although she didn’t have to tell me anything else, it would have helped to know how to communicate with her since it wasn’t something I had any experience in.  Live and learn!

Being Bionic

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 the latest 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 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 wear a CI and a hearing aid.  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 CIs, I’d be happy to answer (if I can…I’m not really up on the technical aspects of things, for instance).

Falling

So, I fell down the stairs yesterday.

Not a “head over heels somersault” kind of fall, more like a “feet swept out from under, slam down on your tailbone as you hit every step” kind of fall.  Ouch.

I wasn’t even running down the stairs or anything…I just stepped like normal off the second step and next thing I know I’m bouncing and slamming down the stairs to the landing by the front door.  (I think I need new slippers…the grippy stuff on the bottom of these is clearly wearing off!)

As I fell, I could feel my CI processors lifting up and then coming back down off my ears.  The magnets dislodged as well, so I fell in complete silence…to me, anyway.  (Dave said it sounded like Paige’s bed fell over…he had no idea what he was hearing!)  I couldn’t tell for sure if my CIs flew off my head and if they were damaged, or if they were still in my hair somewhere.  My first thought was that I hoped they were okay and not broken.

I lay on the landing, trying to decide how much physical damage I’d done, and suddenly felt Dave’s hands on my shoulders.  I couldn’t hear him, of course; I had to shake my head and put my hand up, telling him “I can’t hear, hang on” while I felt around for my CIs.  Luckily they were still on my head, just tangled in my hair, and were perfectly fine.  (I didn’t hit my head, thank goodness.)

In the end, I just ended up very sore and majorly bruised – across my shoulder blades (the first place I hit), my tailbone, my right palm (I must have put my hand down to brace the fall – I have a huge bruise at the base of my thumb) and the inside of my right arm.  I’m fine today, just a little stiff and sore.

What surprised me, though, was how fast my CIs flew off my ears…both of them.  I’ve always been a little paranoid at the thought of being in some kind of accident – car or whatever – and having my CIs fly off, then having the paramedics not realize I’m deaf.  (Without the CI processors and magnets, there’s no visible evidence that I wear them – no scar or shaved head or anything.)  I wasn’t really sure if they would come off that easily or if I was worrying for nothing, but now I really can see how the CIs would be the first thing to fly around in an accident of some sort.  I really wouldn’t want to be unconscious and be plunked into an MRI machine (a big no-no since I have magnets inside my head)!

So now I’m thinking I might spring for some kind of Medic-Alert jewelry…a bracelet, most likely.  I figure I’ll note that I’m deaf, bilateral cochlear implants, no MRI…I think that would cover it.

If you are deaf with CIs and have Medic-Alert jewelry that you are happy with, I’d love some recommendations of stores and/or what you have engraved on it.  Thanks!

Say what?

Conversation between me and Eric this morning:

Me: What kind of cake do you want? (Side note: His 18th birthday is this coming Tuesday)

Eric: The cake is a lie.

Me: The cake is alive?

Eric: No…Portal.

Me: Poodle?

Eric: (cracking up) GAWD, mom, what are you, DEAF?

(both of us laughing)

Eric: PORTAL

Me: Portal! (wondering what this has to do with birthday cake)

Eric: Yes! The cake is a lie!

He then goes on to explain that it’s a video game and apparently they offer you cake and then instead of giving it to you, they kill you. Or set you on fire.

It took a while, but I finally found out he wants chocolate cake for his birthday. 🙂

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