Situation *

Sometimes I think about the weirdest things.  Earlier today I was thinking about all those boot camp scenes you see in movies, where they have a drill sergeant marching the guys along and yelling out that call and response thing.  (Dave told me it’s called ‘cadence.’)  You know what I mean, right?  Well, if I was in that situation, I’d be screwed.  The drill sergeant would yell out his thing, and when everyone repeated it I’d just be mumbling and hoping he didn’t notice that I wasn’t really repeating it.  Because, of course, I wouldn’t know what the heck he was saying.

Oh, I hate call and response situations!  We encounter them at concerts and presentations; we had them come up at both the kids’ college orientations.  Sometimes I can figure out what I’m supposed to say, but usually I fake it.

This got me thinking about other situations that I, as a deaf person with CIs, and Dave, as a hard-of-hearing person, really hate.  We talked about that today as we worked side by side, putting dinner together (chili, in the crockpot…can’t wait).

The first thing I thought of is people talking to me through a door.  I don’t think Dave encounters this as much as I do; it’s probably more of a girl thing.  People love to chat when you’re in a public bathroom.  This always makes me freeze – if I’ve come in with someone else (you know that girls hit the restroom in packs whenever possible!) then I’m not sure if it’s them talking to me, or if it’s someone else in the bathroom talking to some other person.  Not only can I not understand what’s being said, but everything sounds weird in a bathroom with all the tile everywhere and (usually) background noise like music or dryers going or toilets flushing, so voices are hard for me to recognize.  If I know for a fact that I’m alone in the bathroom with the person I walked in with, then I feel like a big jerk not responding to them.  It’s okay if it’s my mom or daughter, because I’ll just remind them that I can’t understand them.  But I used to have this happen a lot with other female acquaintances that I didn’t know that well and who often didn’t even know I had a hearing loss.  It was such an uncomfortable situation!

It also happens in dressing rooms.  Helpful clerks will knock on the door and ask questions and that makes me nuts.  To understand them, I have to open the door and have them repeat the question while I read their lips, and I’m usually in a state of undress.  Just leave me alone, people!  When I was in high school there was a popular store in the mall, Merry Go Round, that I finally learned I should never go into, because the sales girls always, always knocked on the door and chatted when I was in the dressing room.  They’d ask how everything was, if I needed a different size, or they’d try to get you to come out so they could ooh and aah over how the clothes looked on you (and try to get that sale).  It stressed me out so much that I stopped shopping there even though I liked the clothes.

I also hate when someone knocks on the door of either a public bathroom or a dressing room.  At Goodwill, I’ve had dressing room attendants knock and then open the door on me because I didn’t respond.  Talk about embarrassing!  I couldn’t tell if they were knocking on my door or someone else’s, and it caught me so off-guard that I didn’t know how to respond.  In the time it took me to stand there and think, Did they knock on my door?  What do I say…hello?  I’m in here?  Uh…what should I do… I would hear the telltale sound of the key in the lock and see the knob turning.  Usually I have enough time to cover up before they open the door and expose me to the whole damn store.  The bathroom is the same way – I just freeze and don’t know what to say.  Sometimes I say nothing, other times I just yell, “Occupied!” and hope that it was really my door the person was knocking on.

Let’s see, what else…oh.  Talking into my ear.  Please don’t do that!  It doesn’t help me hear or understand you better…it just means I have to crane around and try to get your face in front of my face again.  This goes hand-in-hand with whispering, which was the bane of my existence as a kid.  Kids like to whisper!  I felt like such a dork, having a kid whisper to me and then just looking at them cluelessly.  I turned down a lot of sleepover invitations because of this (whispering combined with darkness…girls whispering after the lights are out…a nightmare for me) and also sleepaway camp for the same reason.  I know my mom probably thought I was just clingy but this was a big part of why I never wanted to stay overnight anywhere.

Dave’s ‘crappy situation’ contributions were restaurants, cashier chit-chat, and events in big auditoriums or loud situations (especially the open houses and orientations we went to for the kids at school).  All of these involve loud environments and unpredictable conversations.  I can always tell when a cashier has stumped Dave with a comment or question he wasn’t anticipating.  Sometimes I can jump in and save him if I’ve been paying attention and lipreading.  I’ve mentioned before that we usually don’t go to restaurants, but if we do we try to get a booth along the wall, and Dave makes sure to face his good ear in the direction of the waitress.  I do a little better now in these kinds of environments thanks to ClearVoice knocking out the background noise, but Dave still really suffers, poor guy.

Of course, we both hate drive-thrus, another thing I’ve mentioned before.  It’s a good thing we don’t do a lot of take-out!  You just never know what kind of goofy question they’re going to throw at you, if the speaker system is going to be clear or staticky, or if the person talking to you is going to have an accent you can’t understand.  It’s not just food though; we also encounter uncomfortable drive-thru situations at the bank and the pharmacy as well.  In those cases, we try to pull up to the window on the building, so we can (hopefully) see the person’s face and lipread if they have questions.

How about talking to someone in the dark?  Nothing is more uncomfortable than sitting around a campfire or sitting outside at night and trying to talk to a group of people (especially those you don’t know very well).  Again, this is something I dealt with more as a young person ; now we just avoid those kinds of situations if we can.  Every now and then, though, we get invited to do something like this and we do go…we just don’t talk very much!

To end this on a more positive note (I’m starting to sound like a crabby curmudgeon here), I know I talked before about what it’s like for me at the end of the day, when I go to bed and everything is silent.  In the morning, though, I go from total silence to instant sound, and it’s like the part in the Wizard of Oz when everything changes from black and white to color.  I never know what my first sound of the day will be.  Sometimes it’s just silence; I’m in the bedroom, usually alone, when I put my CIs on.  Sometimes it’s really loud, because I have a tendency to put my CIs on right when Dave is grinding coffee beans in the kitchen.  But today, the first sound I heard was loud, rumbly purring.  Beanie was sitting at my feet, looking up at me.  She went from silently (to me) staring to loudly purring in the space of a second.  What an awesome way to start the day!

Miss Beanie, staring at you

* This song is by Yaz.  LOVE!

Musical Mayhem

Last week Dave turned on the TV, and then called me over.  “Look!” he exclaimed, pointing at the screen.  The Monkees were on, and he knows I just love them.  I grinned and sat on the arm of the couch to see what song was coming up.  As the song started, I recognized it right away.

“Oh my God, it’s ‘Look Out, Here Comes Tomorrow’!  I’ve had that song stuck in my head for weeks!”  The coincidence was just so strange – this song has seriously been popping into my head at random times over the past month.  Davy sings it, and it’s about having to choose between two different girls.  (I know, first world problems and all that.)  The thing is, this episode was captioned.  I’ve been watching the Monkees since I was four or five years old, but it’s been years since I’ve seen an episode and they definitely weren’t captioned the last time I watched.

The lyrics to the song scrolled across the screen.  “I see all kinds of sorrow, wish I only loved one…look out, here comes tomorrow, oh how I wish tomorrow would never come.”  And I turned to Dave and said, “Well, it figures…I’ve been singing this song wrong all these years.  I always thought the lyrics were ‘I’ll feel all kinds of sorrow if I choose the wrong one’.”  I mean, we’re talking about me SINGING those lyrics at Monkees concerts, folks.  Urgh.

I could tell when I was watching the screen that Davy’s lips weren’t moving the right way for the lyrics I thought he was singing, and when I glanced down at the captions it confirmed it.  This brought back a lot of memories, especially from high school.  Back in MY day, there was no internet and very few of the albums (and I do mean albums, not CDs, which didn’t exist) had lyrics on the album sleeve.  I used to be so excited when I pulled an album out and saw either an insert with lyrics or lyrics printed on the sleeve.  Otherwise, it meant that I pulled up a chair next to my stereo speakers and replayed the song over and over, writing down what I thought I heard.

I used to do this a lot with my friend Kristie, who had perfect hearing.  Even hearing people have trouble with lyrics sometimes!  It always helped to have a better ear when trying to decipher lyrics; I can remember us spending hours listening to Tom Petty and, yes, the Monkees as we worked on figuring out what they were singing.  (There was also a lot of laughter over some of the nonsensical things we came up with!)

It’s a completely different experience for me to listen to a song where I really know what’s being said.  Everything comes together; otherwise I find myself just listening to the music and the beat and kind of mumbling along.  This is okay with dance music – I confess, I pretty much never knew anything being sung on the New Order albums I listened to – but generally I really like knowing the lyrics, and they mean a lot to me.

If I had the lyrics, I’d read them while I listened to the song, over and over, until I had them memorized.  It wasn’t like I could glance at them and think Oh, okay, I get the gist of it…now it will make sense when I hear it.  I still couldn’t understand what was being said if I didn’t have that lyric memorized.  Yes, I spent a lot of time listening to music as a teenager and young adult!

I don’t listen to new music much now – I don’t have the free time to sit with a CD and the lyrics and really get to know the songs the way I used to, so if I listen to music it tends to be songs I remember from years back.  The last CD I can remember really working on to memorize songs was Playing the Angel by Depeche Mode, back in 2006.  I took Eric to the concert when they came to town, and although I knew all their earlier stuff by heart, I wanted to be sure I really knew the songs off the newest album since that was the reason for their tour.  We had such a good time together at that concert but good grief, it was SO expensive!  I remember getting tickets to see great bands for about $15 back in the 80s, maybe a couple bucks to park, $10 for a t-shirt.  By the time all was said and done, we spent over $200 on that concert (just for tickets and parking…I think I might have bought Eric a t-shirt, I can’t remember).

Anyway, it’s pretty awesome to finally have song lyrics at my fingertips, thanks to the internet.  I mean, there is no way I would ever understand what the Beatles were singing during ‘Come Together’ otherwise.  Toe jam football, indeed!

Bully

We finally got around to watching the documentary Bully yesterday.  Have you seen this?  You should see it.  If you were ever bullied, if your kids were ever bullied, if your kid is a bully, or if you just have a heart in general, you should watch this movie.

I was not a popular child.  I was quiet and shy, and I was usually lumped in with the ‘brains.’  This was fine with me, because social interaction in school was tough on me.  It was too loud to hear well in the cafeteria, and I couldn’t hear whispers in the classroom.  My goal every year was to try to find at least one good friend that would stick with me during recess and lunch.  I never had a big group of friends, but one friend was all I needed and I usually managed that pretty well.

I was probably taunted more than I realized, since I couldn’t hear what was being said unless it was to my face.  I wasn’t physically tormented very much – I do remember one big girl in elementary school who would slam me from behind when I was sitting at my desk.  When I got glasses, I was helpfully told by one of my friends that people were calling me ‘four-eyes.’  Things like that.

I was always picked last for teams in gym.  I never really understood the rules for team sports because it was too hard to hear the teacher in the huge, booming gymnasium.  So I’d hit the softball, for instance, and then I wasn’t sure what I was supposed to do…keep running until I got back to where I started?  I didn’t understand that I had to get on the base, and I didn’t understand the concept of stealing bases, although my teammates were all yelling instructions to me (and I couldn’t understand what they were saying).  To say that I hated gym class with a passion is an understatement…although I did okay in individual things like gymnastics and roller skating.

I remember writing a story when I was in elementary school about a kid being tormented by her peers, and the teacher gently admonishing me, saying she was sure things like this didn’t really happen.  I don’t have the paper anymore – I think I wrote about the girl being kicked and pushed down – but I remember thinking to myself, “Yes, it happens…I know, because it happened to me.”  I’m pretty sure that’s when I realized adults don’t really understand what it’s like to go to elementary and middle school as a slightly unpopular, shy child.  Kids are mean.

Dave talks bitterly of what he went through as one of the smallest, poorest kids in school.  He was enrolled in kindergarten when he was four years old, so he was always smaller than the other kids.  He learned at an early age that the only way to get people to leave him alone was to go nuts on them – if they think you’re a little crazy, they won’t bother you.  As we talked about the movie last night, he mentioned, “Yeah, it sucked being at school…but that was nothing compared to what I had waiting for me at home on the foster farm.”  So his perspective is different from mine; at least I had the relief of a comforting home waiting for me when the school day was done.

Eric, I’m sure, can tell lots of stories of elementary and middle school hell.  He was a big kid, though, and Dave would always tell him, “If someone’s giving you crap, just pick up a chair and whale on them with it.  I guarantee they’ll never bother you again.”  Eric already had a bit of a problem with controlling his anger so I would intervene and tell him that no, this was not the way to handle things (then turn to Dave with wide eyes and upraised eyebrows, mouthing, “Don’t tell him stuff like that!!”).  Eric put up a protective shell and went in the opposite direction, being just about as unconventional as he possibly could, absolutely shunning peer pressure to look and dress like everyone else.  He took pride in being as different as possible, especially in high school.  It was to the point where, on Crazy Dress-Up Day, when other kids were wearing the goofiest things they could find, he wore jeans and a t-shirt…and many people didn’t even recognize him.  He customized all his clothes; I still remember him being told to take off a suit jacket he had customized because the teacher decided it was offensive.  (There was something on the back…a song title, or lyric?…that had the word ‘die’ in it, I think.)  So he handled his issues in a way that was completely unique (and luckily, he never did bash anyone over the head with a chair!)

Paige dealt with bullies all through school, poor kid.  I think it was worse than I ever knew; she became very good at keeping things to herself and making up stories.  It would come out in little ways; she would get a dress or skirt that she absolutely loved, but then refuse to wear it to school.  After a while, it would come out that she had been teased before when she wore a skirt…and she never wore a skirt or dress again, until she was almost done with high school.  She would make friends and they would turn on her; I think it made it really hard for her to trust people.  She started cutting in high school.

At the end of freshman year, completely out of the blue, she told us she wanted to move to her dad’s house.  We were stunned; things at home were great, so it wasn’t that she was having problems with me or Dave.  Eventually she told us she was getting seriously bullied on the bus and at school, kids were calling her names and she didn’t want to go to that school anymore.  The school year was almost over at this point, but we felt so badly when we realized what she’d been going through; we had no idea at all, so we couldn’t intervene.  With a heavy heart, I agreed to the move and she spent the summer at her dad’s.  When she came back for a visit on her birthday, she asked to move back home and of course we agreed.  But she still had issues with various kids, and it broke my heart to see her trying so hard with people I could tell were not real friends to her.

At one point in the documentary, a boy named Alex is being terribly tormented on the bus.  It’s bad enough that the filmmakers get worried for his safety, and they show the footage to his parents and the school.  His mom sits him down for a talk, and at first I wasn’t sure what she was getting at.  She was asking if it made him feel good to be choked and pushed; she told him, “Friends don’t make you feel this way.  These people are not your friends.”  I couldn’t believe that he really felt his tormentors were his friends, until I remembered that Paige was the same way.  She would take so much abuse from people and make excuses for their behavior.  Alex looked at his mom for a while and then he said, in a quiet voice, “If they aren’t my friends…then what friends do I have?”  And she just looked at him – I could see her heart breaking.

For Paige, it all came to a head when she found a Facebook page where her ‘friends’ were saying unbelievably horrible things about her.  It was painful for me to read; I can’t imagine how it made her feel.  These were people who had invited her to their birthday parties, people she really thought were her friends.  No matter how many times Dave and I tried to tell her that a friend doesn’t treat you that way, she just would not believe us.  Until she found proof.

She was hysterical, and Dave was in a white-hot rage.  He printed the pages and took them to the police station.  I was terrified he’d end up in jail; he was so angry that if he’d gotten his hands on the kids, he would have landed them all in the hospital.  The police actually took action, and an officer went with Dave to the home of every kid that was involved.  Dave said the police officer really let them have it; he was impressed enough by what the officer was saying to the kids that he only got overly hot under the collar once (after which, the police officer casually mentioned that, ahem, he might not want to say that to the next kid).  It scared them all enough that they left Paige alone after that (or at least, that’s what she told us…hopefully it’s true).  The school was also notified and they were basically worthless; Dave and the police officer were the only ones who made a difference.

Not every kid has someone to stand up for them.  And as parents, we have that fine line between being helicopter parents and getting too involved, doing too much for our kids, and not doing enough.  A big message from the film was that the kids need to tell us what’s going on.  We can’t help if we don’t know.  I spent a lot of time yelling at the screen, especially at the school officials who seemed to be handling things the wrong way.  It will make you think, it will make you angry, and it will break your heart.  But you should still watch this movie, if you can.  It comes out on DVD in February.

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)

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

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).

The Dreaded Deli

We usually do our weekly grocery shopping on Monday, but since that’s Christmas Eve we decided to go a day early.  We pulled into the parking lot and Dave exclaimed, “What’s going on?!  Why is it so busy?”  I reminded him that Christmas Eve was tomorrow and lots of people run out the day before to stock up.  It was basically choosing between the lesser of two evils (today or tomorrow) so we took a deep breath and headed in to do battle.

Things went along fine until we got to the deli counter.  Neither one of us likes to do deli duty, but it falls to Dave about 75% of the time.  Here’s how it works for someone with hearing loss at a busy deli counter in a grocery store:

You go up and pull your paper tab, then see how far your number is from the one displayed on the digital sign.  Whether you’re 10 numbers away or 2, you stick by the counter and go on hyper-alert because you can’t hear a freaking thing.  People are calling out their orders, the clerks are calling out numbers or asking questions (it’s hard to tell which) – you can’t just hang out and look around, counting on being able to hear your number when it’s called.  Instead, you stare at every clerk in turn.  (Today was super-busy, so there were probably 6 back there; sometimes it’s as low as 2 or 3, which makes it easier.)  You watch them hand back the wrapped items and notice whether the customer asks for something else or they walk away.  If they walk away, you stare at the clerk and hope to figure out the number they call by a combination of reading their lips and hearing what you can.  You assume it’s the next number on the board but sometimes they move right past it to the next number and then don’t change the board.  This is trickier when there are so many people milling around and so many clerks working, because sometimes a clerk all the way on the other end of the counter will call out a number and catch you unawares.

Once you successfully realize it’s your turn, then you have to tell them what you want and hope you can hear/understand their questions if they have them.  Many of them have accents which makes it even harder.  (One time I was ordering arancini and the clerk asked me, with a heavy accent, if I wanted meat or spinach.  I was caught off guard because I didn’t see two varieties of arancini on display so I didn’t expect the question and I had to ask him to repeat it 3 times before I kind of figured out what he was asking.  I couldn’t tell if he said “beef” or “meat” but I just said “meat” and figured it would be okay.  [It was beef, by the way.])  It is a truly stressful experience from start to finish, but our store has such a good deli that we always brave it.

This brings to mind other situations we avoid and/or loathe as hearing impaired individuals.  We never, ever go to bars and rarely to restaurants.  When we had our company Christmas party Friday night, we tried a new place for our food.  It’s a local sports bar, known for good (if not necessarily healthy) food and so we called in an order and went to pick it up.  We made sure Paige went with so she could be our ‘ears.’  We had to go in and walk through the bar to an area where the food pickup was, and it was SO loud and so crowded.  We got our food with no problems and as we drove home, Paige said, “Why do people enjoy going to places like that?!  It’s so loud and you can’t hear anything!”  This is coming from somebody with perfect hearing.  I told her it’s even worse when there’s loud music playing.  It is so far from enjoyable for us that I can’t really imagine any scenario when we would go to a bar or lounge.

The drive-through is always an exercise in frustration.  Even Paige has a hard time understanding what they say through those crappy speakers.  One place in our area, Portillos, has a great system though.  They are usually incredibly busy (because their food is that good!) so they have employees walk down the line of cars and take the orders in person.  It’s great because they lean in your window so you can hear and read lips.  They stick an order number on your windshield, then somebody else comes along and takes your payment.  By the time you reach the window, all you have to do is grab your bag and be on your way.  We very, very rarely get fast food but when we do, we tend to choose Portillos now.

On a happier note, my CIs do make it a little easier to navigate these challenging situations compared to when I had hearing aids.  The ClearVoice program does a much better job with background noise.  Because of this, if I can handle the communication in a loud place I’ll do that to help Dave, who just has the one hearing aid and his deaf ear, which makes it even harder for him to tell where sound is coming from (i.e., where the deli clerk who called his number is standing in relation to him).  Between the two of us, we do a pretty good job of the ‘Deli Dance.’  :)

Wide Open Spaces

“When we buy our next house,” I mused, “I would like it to be far enough from our neighbors so that they won’t be tempted to have a conversation with me from their yard.”  I knew I wouldn’t need to explain this to Dave, although it doesn’t bother him as much as it does me.

I’m not a hermit, I’m not anti-social, and I don’t hate my neighbors.  But if I start to walk out onto my upper deck, which means that neighbors from all around can instantly see me, I will turn around and walk right back in if I see anyone else outside.

Here’s the scenario:  I walk outside, to do whatever, and I’m minding my own business.  After a while, I glance over and realize one of my neighbors has been talking to me, yelling from their yard, and I’ve been ignoring them.  Awkward.  Even worse, now that I’ve made eye contact, I’m expected to respond.  But no matter what I say, I will not understand what they shout back.  This leaves me with two options:  casually wave and immediately turn around and go back into the house, or go down two flights of stairs, across the yard, to the fence and have a conversation I really wasn’t planning to have.

Yeah, it’s easier to just go back in the house if I see anyone else outside.

Like I said, I don’t hate my neighbors.  At this point, I really just don’t know any of them very well.  The neighbors to the left were here when I moved in (in 1989!) but were not super social, which suited me just fine.  What I knew of them came from my ex-husband, who was the type to wander into someone’s yard and stand talking to them for an hour.  I could tell that our neighbor didn’t appreciate this gregariousness so I mostly just smiled and waved if we made eye contact.  I know his name, his wife’s name, and a couple of their (now grown) kids’ names but that’s about it.

To the right, we have a rental home.  (Yay.)  Its occupants change every year or two.  At this point, we really don’t bother getting close with these neighbors unless they make the effort and/or seem like folks we have a lot in common with.  The latest batch are young partiers with a couple of young kids who scream outside all the time (the kids, not the parents).  Mildly annoying, definitely not people we would choose to spend time with, but otherwise harmless (other than playing music loud enough that we can feel the walls of our house vibrate – bothering Paige more than me or Dave).  But, you know, they hang out with groups of friends, getting drunk (and, um, other stuff) and that makes them chatty.

I’ve never gotten around to talking to them but Dave has – just neighborly chitchat as he works on the yard or whatever.  They know we both have hearing loss, but to be honest, this never stops people.  They either forget, or they don’t grasp that we can’t understand what they’re saying from the distant comfort of their backyard.  So it really doesn’t help to inform them; it just makes me feel less guilty when I realize I’ve been ignoring them because hey, they should know better!

A few weeks ago we had a big storm come through and everyone was outside, looking up at the sky.  The partying neighbors had friends over.  Dave, Paige and I were watching the storm roll in, trying to decide if it was really going to be a tornado as predicted.  As we scanned the skies, Paige nudged Dave and said, “Hey, the neighbors are talking to you.”  Aw, crap.  Dave looked over and one of the guys waved a beer.  Dave looked confused.  Paige said, “He wants to know if you want a beer.”  (Which was nice – like I said, I don’t hate these people!)  Dave just shook his head and waved his hand in a “thanks but no thanks” sort of way, and turned away.  He doesn’t really care what people think if he gives them the cold shoulder; I’m the one who spends too much time worrying about what other people think of me.

So when we daydream about our next house and we come up with features we would love to have, we do include things like an attached garage and air conditioning.  But we also include lots of space between us and our neighbors.  A wave from the distance is fine, thank you very much.

Perspective

Three years ago, I woke up on this day and put on my hearing aids.  I didn’t really expect to hear anything; the day before was my doctor appointment/hearing test when I found out I was totally deaf in both ears.  But still, there was that little hope that maybe they were wrong, maybe my hearing was coming back.

Just the act of waking up and remembering my hearing was gone made me sick to my stomach.  Another day of working so, so hard to understand what everyone was saying.  All I had to rely on was my speech reading skills, with a few signs and finger-spelling tossed in.  My mind was just in constant turmoil; I wanted to curl up in bed and cry and refuse to believe this was happening to me, but I had my kids to think about, candles to make and ship.

The first entry in my blog was called “Hindsight is 20/20.”  In that entry, I was looking back at that day, wondering if it would have mattered if I had realized all those ‘weird hearing’ moments were actually a sign of things to come.  Maybe I would have gone to the doctor sooner…would that have helped preserve some of my hearing?

Now, though, I’m thinking that I wish I could have looked forward from that day, or that time in general.  If I could’ve seen myself today, right now, sitting here typing and hearing the keys as I hit them, hearing the door slam as Dave goes out to the garage, hearing Toby’s doggie nails as he walks across the floor…well, I could’ve been spared so many days of sadness.  I would still have grieved losing my natural hearing, because nothing can bring that back.  But if only I had known that this absolutely amazing technology would let me hear things I’d never heard before!

I was talking to Dave about the fully-implantable CIs they are working on –you have to have surgery every 10 years to replace the implant because the batteries only have a finite life (of course).  As we debated the pros and cons, I realized that I really like the situation I have now.  I really don’t mind being in my ‘natural’ (deaf) state when I’m sleeping, for instance.  If I had the added input of noise and sound, I’m not sure how well I’d be able to sleep.  Even when I still had some hearing, I took my hearing aids off at night and had a much reduced level of sound coming in.  I’ve basically never had full hearing while I slept.  I definitely wouldn’t want to have surgery every 10 years!!  On the other hand, it would be awesome to be able to hear while I was swimming, and to not worry about getting my CIs wet if it’s raining.

Right now I feel like I have the best of both worlds.  Who knows what the future brings?  Someday I might write another blog entry referring back to this one, talking about all the wonderful advancements I wish I had known about back on April 17, 2011. 

Snap, Crackle, Pop…Part 2

I told Dave, “I think I’m getting a problem with static in my CIs” as I was standing over by the end of our kitchen island, while we made dinner.  “I keep hearing this kind of low staticky sound, but I think I’ll just wait until my next mapping to have it checked out, it’s not really that bothersome.”

I walked over to the Dutch oven to stir the onions that were simmering for our French onion soup.

“Um…never mind.  I just realized what I was hearing.”

Doh!

(Even two and a half years in, I’m still caught off guard by sounds sometimes!)

Get the Balance Right

It’s been a year since my last mapping, which is CI-speak for reprogramming my cochlear implants.  When I first got them, I went to the audiologist weekly for new maps.  Then I progressed to every month, then 3 months and finally, 6 months.  This is the first time I’ve gone a year between mappings.

The audiologist who did my last 2 mappings was out on maternity leave, so this time I saw Kathy.  She did my original hearing tests when I first lost my hearing in 2008, and also did my CI assessment.  However, she was on maternity leave when I had my surgery and was activated, so she has actually never done a mapping for me before.  I was excited to work with her again because I really liked her and she was so nice and helpful when I was going through my evaluation process.

Kathy was still with another patient when I was brought back, so a different audiologist (Kris, who did my activation and most of the early mappings) and intern/student got me started.  They took me right to the sound booth for testing (my favorite thing, whee).  There doesn’t seem to be a set pattern with this – sometimes I’m given the hearing tests before my mapping and sometimes they wait and do it after I’ve been mapped.

I started with the tones, and they let me choose which ear to test first.  I opted to go with my right ear first, which is the one that’s been deaf the longest and performs worse on these tests.  It stresses me out the most to have this ear tested by itself, so I figured I’d get it over with and then my results would get better from there on in.  This actually took away some of my ‘perfectionist’ stress – the hearing tests always make me feel like a bit of a failure, even though I know that’s ridiculous.  (I mean, if I was tested without my CIs, I wouldn’t be responding at all – I looked at my hearing tests from when I lost my hearing and the marks are almost all along the 110 db line with little arrows down to 120 db, and a couple around 100 db.)  But starting with the worse ear and working my way up made me feel like I was accomplishing something as my responses got better.  Just one of my weird personality quirks, I guess!

They tested each ear separately and then both together.  I always forget to ask for the results of these tests (so I don’t have official results in front of me) but they did mention that I didn’t give a response for some of the higher frequencies.  These are still almost impossible for me – if I get anything at all, it’s just the sensation of the CI processor compressing the sound down because those high pitches set off the noise compression program.   This time I didn’t even sense that – I guess I just wasn’t hearing the higher pitches at all.  I think this was with my right ear – I know she said it happened with one of my ears, not both.  (I was using my regular listening program, not the background noise compression program, but even the regular program will compress.)  We did work on the high pitches later on during the mapping; more on that later.

After the tones, I listened to the man speaking sentences.  Last time I was tested, the audiologist spoke the sentences and I did much better than normal, especially once they added in the static/background noise.  This time, I did pretty good in quiet – I’m not sure about my right ear, but I got 100% correct with my left ear only and with both ears.  In noise, I think I just caught a couple of words with my right ear – it is very, very difficult for me to pull his voice out of all the background noise – and I did better with my left ear, and then FAR better with both ears.

I was quite relieved to get out of the sound booth and go back to the office for the official mapping!  Kathy started by asking me to just talk to her about my hearing for the past year.  I explained that for at least the past 6 months, I had been using the background noise program pretty much exclusively.  (My cochlear implants can store 3 different sound processing programs or strategies.  I have one for regular listening in Slot 1, one for background noise compression in Slot 2, and one for the Direct Connect earhook in Slot 3.)  The regular listening program was just too loud; I felt like it was overwhelming, my voice sounded very loud and echo-y to me, and the background noise compression program was just more comfortable.

I had really not used my Direct Connect program at all – I was mainly using this to connect to my mp3 player when I was using the treadmill, and now I walk with Dave on a daily basis and almost never use the mp3 player.  So I asked if I could try a T-coil program on that third slot instead (to help with the phone and utilize things like FM and loop systems that usually use T-coil).

When I get mapped, I have to take off the CI that is not currently being mapped.  I hand the other one to the audiologist and she removes the rechargeable battery and slips on a connector that connects my CI to her computer via a long cord.  Then I put the CI back on.  During all of this, I don’t hear anything at all so I rely on speech reading.  She hands me a chart to use to indicate whether the sound I’m hearing is too loud, too soft, comfortable, etc.  There are probably 8-10 different levels of sound I can indicate on the chart.  This time, I also got a chart to use for comparing the volume level of two different sounds.  This was totally new to me and I really liked it – she was using it to try to make sure all the electrodes were at a similar, comfortable volume.

So I’m sitting there in total silence and then all of a sudden I hear a “boop boop boop” sound coming into my ear.  I listen for a second and then indicate if it’s comfortable, too soft, too loud, etc.  Then I hear a different tone for a few seconds, then the original one.  Now I have to report whether one sounds louder or softer than the other.  It’s kind of tricky, because they are different in pitch – some are high pitched, some are low – and I need to just think about how loud they sound.  Most of this mapping was done with comparing the volume of two different electrodes, and it was really interesting to do it this way.  I felt like it really helped to be able to compare the volume of two different sounds rather than just listening to one and reporting whether it was too loud or too soft.

Once all the electrodes are mapped (and I’m still connected to the computer), the CI is turned on and I have to listen and let the audiologist know how things sound.  My initial reaction is to always say it’s too loud, partly because when I first put my CIs on, the big rush of sound is always a bit loud and overwhelming.  If I wait a couple of minutes, things settle down and sound okay.  So Kathy reminded me of this, and suggested we just talk for a few minutes.  I had Dave talk, so I could see how his voice sounded, and the four of us just chatted for about 3 minutes.  I was surprised to find that I didn’t need the sound lowered after all – things started to sound really good and comfortable volume-wise.

The right side was mapped the same way – I took off my left CI, was connected to the computer and, again, I compared the volume of two different tones for the majority of the mapping.  I still have some high pitched tones that just make me completely dizzy – I hear them and my eyes feel like they are spinning around in my head.  I discovered that I already had one electrode turned off on the right side (there are 16 electrodes on each side) and Kathy ended up turning off two more.  If I remember correctly, I think she said that they were probably in a part of the cochlea that wasn’t effective and if they stayed on, things would sound worse (and I would get that vibration/dizzy feeling).  When they turn off an electrode, the frequencies get allotted to another electrode so it doesn’t affect the quality of what I hear.  I hadn’t even realized I had one electrode already turned off on the right side, so this was a very informative mapping session.

Things sound really good now – she worked on those high frequencies to make sure I’m getting more of them.  Even though I don’t like the sound of high frequencies, they are really important for speech and clarity.  Now I’m using the regular listening program 90% of the time, and I only switch to the background noise program if I’m in a really loud situation.

I also found out that my background noise program was only at 40 IDR (Input Dynamic Range, which basically is how many sounds are allowed in).  Normal IDR is 60 (I believe she said it used to be 70).  You can have your IDR set up to 80 if you wish – it’s all about what you feel sounds best.  But 40 is pretty low!  She changed the IDR to 50 on my background program and made my other programs 60, but said I can have it increased if I want (or lowered).  Right now I feel like it’s a good setting for me – I can tell I’m hearing more on the background program, but the loud noises are still compressed so it’s kind of nice to get a bigger variety of sound.

I will probably go back sooner than a year if ClearVoice is approved before September 2011.  That’s a new software strategy that is currently in FDA trials and is awaiting final approval.  I know quite a few people outside the US that have it already and really like it, so I asked Kathy to email and let me know as soon as it’s available here.  She said they are going to start training on it in October (next month).

One final note – my SlimCell batteries were starting to last for only about 6 hours, which is really short.  I’ve noticed since my mapping that they last longer, which is kind of weird – but it’s a nice side effect, so I’m not complaining!

In Between Days

Before I lost all of my hearing, Dave and I had pretty similar degrees of hearing loss.  There were a few differences – I always preferred bass and hated high-pitched sounds; Dave thinks bass sounds terrible and it really bothers him.  But in general, if there was something I could hear, he could hear it too.

Now with my CIs, I keep assuming he can hear what I hear.  It’s really hard to get used to the fact that at times, he can hear 100% better than me (when I have my ‘ears’ off)  and other times, I hear things that he doesn’t.

We’ve been taking walks in the morning and the cicadas are out in full force.  When we walk out the door, the sound just assaults me – it’s really, really loud.  I’ll stop, cock my head and say to Dave, “Do you hear that?” and he’ll look at me like I’m crazy.  He just totally doesn’t hear it.  Then I’ll say, “It’s so loud!  Turn up your hearing aid.”  So he goes along with it, turns up his hearing aid…nah, nothing.  It’s just out of his range of hearing — that really high-pitched sound they make.

It was hard for me to believe he couldn’t hear it because that’s just not an experience we’ve had…I could always relate to what he could and couldn’t hear.  Now I’m learning to just accept it and not think he can still hear something if he turns up his hearing aid.  (How annoying I must have been – to his credit, he’s always been a good sport about it and never seemed irritated.  Sorry, honey!)

Actually, Dave’s hearing has been worse lately and it was a little scary last week.  I heard him clicking his tongue and snapping his fingers, the typical thing he does to test the volume of his hearing aid.  He’d look puzzled, take off his hearing aid, check the volume.  Finally he admitted he could barely hear.  I suggested cleaning his ear, in case there was some ear wax build-up.  It felt very familiar – exactly what I was doing when I lost my hearing two years ago.  Ear wax turned out not to be the problem, and finally he switched hearing aids.  He tried on one of his back-up aids and that worked, although the sound quality wasn’t as great as what he had been used to.  It looks like his newest hearing aid has failed, so he has an appointment in a week and a half at the VA hospital audiology dept.  What a relief that it was his hearing aid and not his actual hearing!

Funny thing though, Dave isn’t as concerned about hearing as I am.  It really didn’t even faze him to think he might be losing most of his hearing.  He will still get up and wander around the house without his hearing aid on, whereas the first thing I do is put my CIs on.  When he’s reading, he’ll take out his hearing aid; it would never occur to me to do that.  Maybe it’s a mom thing – I feel like I need to hear my best all the time, even though my youngest is almost 16 and it’s not like she’s going to be crying in her crib and I won’t hear her.  (!)  Just a habit I find hard to break, I guess.

I do find myself periodically spending huge chunks of time without my CIs on now, though, because I stopped using a blow dryer and have been air-drying my curly hair.  It can take hours to dry so there are some days I don’t put my ‘ears’ on until early afternoon.  I actually don’t mind it – my speech reading skills haven’t suffered since I got my CIs, so I can still follow conversations just fine.

Coming up on two years since I got my CIs activated:  August 20^th.  I was telling my son the other day that certain exercises are hard to do with CIs, things like sit-ups and jumping jacks.  I either have to wear headbands to try to hold the processors and magnets on my head, or I have to take them off entirely.  So after I finished telling him the things I couldn’t do, he said, “Yea, but you know what you can do?  You can hear.”

Well said!