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Deaf Notes

Every night, I follow the same routine.  After my contact lenses are out and my pajamas are on, I take both of my CI processors off.  They consist of three parts:  the rechargeable battery, the actual processor, and the T-Mic earhook (the part that hangs over and into my ear).  I leave the processor and T-Mic attached but I slip off the battery from each processor and slide them into my battery charger.  The CI processors go into my Dry & Store unit, which does a good job of removing any moisture that’s built up.  I nestle my processors in with Dave’s hearing aid and ear mold, turn the unit on, take off my glasses and get into bed.

I don’t fall asleep right away – I usually read and mess around on my Nook tablet for at least an hour.  Dave does the same with his tablet.  We usually don’t talk – it’s just too much of a hassle.  Besides being deaf, with my glasses off I’m so nearsighted that I need to basically be about an inch from something to see it.  I read with my tablet pretty much touching my nose, and even with Dave lying right next to me, I can’t see him well enough to lipread him unless I have my glasses on.

I really do miss being able to just lie in bed and have a casual conversation with my husband.  If we need to talk, I put my glasses on and he uses the tablet to highlight his face better (we just have our bedside lights on when we’re reading at night).  Sometimes he has to lift his head up onto his hand so I can see his mouth better.  There’s no tossing off a quick comment about something he’s reading – I can say something to him, though, since he can still hear me well enough with his hearing aid off.

So last night we’re reading, and I’m in my silent world, and I notice Dave get up and leave the room.  He goes into the bathroom, comes out and turns on the hallway light…which is definitely unusual behavior.  I just had to know what he was doing!  When he came back, I put my glasses on and asked him what was going on.  He answered, using the slower, more enunciated manner of speaking that he uses when I have my ‘ears’ off.  (I asked him once if he also talks louder, and he laughed and admitted that he does.  He knows I can’t hear him but it’s just habit.  However, he is very, very good about slowing his speech down to a degree that I can usually lipread everything he says with no problem at all.)

I furrowed my eyebrows.  “Airy…something?”  He tried again.  Again, it looked like he was saying ‘airy’ and then a word I really couldn’t figure out.  I shook my head.

He grinned and made the sign for bird, then scrunched his face into an angry expression.

“Bird!  Oh – Angry Bird!”

Dave laughed and nodded, and went on to tell me that he’d stepped on something coming out of the bathroom, which was why he turned on the hall light.  One of the cats had dropped their Angry Bird toy right by the doorway, apparently.

“That is so weird…I really didn’t see the ‘ng’ part of ‘angry’…it totally looked like you were saying ‘airy’!”

Usually if we have trouble like this, Dave will completely rephrase his sentence or fingerspell for me.  But every now and then we just do our own version of sign language like this, and it gets the message across.

We were watching Switched at Birth last night, which features many deaf people as well as hearing people that sign.  I enjoy catching the signs that I recognize, which admittedly aren’t many.  The hearing people always speak while they’re signing, and I noticed they usually sign what they’re saying, in the same order they say it…not every single word, which I believe would be Signed Exact English, but the words they sign are usually the same as the ones they’re speaking.  I don’t know ASL but I know a little about it, and the signs aren’t always in the same order as they would be if you spoke the sentence.  I asked Dave if he thought they were doing ASL or something else, and he guessed maybe Pidgin Signed English.  That’s closest to what we do, when we sign.

It made me wonder if there are any classes that teach PSE.  As I’ve mentioned before, there aren’t any ASL classes around here other than the super-expensive community college class.  I think, though, if I were going to take sign language (and I really, really want to!) I would want to take PSE since that’s what Dave and I use, and he’s really the only person I sign with.  We’ve rented videos and looked online at sites, which is fine, but it would be so cool to find an actual class we could attend together.  I’m keeping my eyes open – who knows!

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

Well said!

Sick Hearing

So last week my hearing got really weird.  I realized things were sounding really loud again and I was tempted to turn down my volume.  I thought, “Oh, maybe this new T-Mic is going out like the other one” and switched it with one of my back-ups.  Nah, everything still sounded the same (and weird).

As the day went on, I realized everything sounded like it was echoing, especially voices (including my own voice).  The volume stopped being an issue, and instead it was just the quality of the sound…echoey and almost like I was in a tunnel, hearing things shouted down to me.

It kind of freaked me out, so I went and changed out my headpiece (the magnet that attracts to the magnet inside my head).  I even went to one of my back-up processors, but still, everything sounded weird and echoey.

This is one of the things I still need to get used to with my cochlear implants.  When things sound different from what I’m used to, does that mean it’s an equipment/hardware problem?  Do I need a new mapping (which is the software that the audiologist programs for me)?  Or is it just a temporary change due to fluctuations in my health?

Maybe in time it’s one of those things I’ll just get a feel for, but right now I’m hyper-sensitive to any changes in my hearing…especially after the recent revelation that my T-Mic wasn’t working to full capacity.  So my first move now is to check the hardware.  I switch out my processor, T-Mic and headpiece to my back-ups and see if there’s a change in how things sound.

Since there was no change, I figured my next move would just be patience.  If it was a health-related hearing change then I would expect to see improvement in about a week.  If a week or so went by and my hearing didn’t improve (or got worse), I’d put in a call for a visit (and mapping) with my audiologist.

You know how your hearing gets weird when you have a cold?  Usually it gets kind of muffled, and you feel like if you could just yawn and “pop” your ear, things would be clearer?  I assumed that kind of thing wouldn’t happen to me anymore now that what I hear goes right from the electrodes in my cochlea to my hearing nerve.  I figured I was bypassing all the stuff that makes your hearing get weird when you have a cold.  But I’m not a doctor and don’t know the workings of the inner ear very well.  A while back, I’d mentioned to other CI recipients that when I felt like I might be coming down with a cold, my hearing (with the CIs) got weird.  Most said the same thing happened to them.

So I thought, well, a cold has been going around the house.  My husband and daughter had it, and my son and his girlfriend stopped by the Monday after Mother’s Day and they ended up getting sick too.  I never got sick, but I figured maybe my body was fighting something off and I didn’t have the usual symptoms (runny nose, sore throat) but it was still affecting my hearing somehow.  I don’t know – maybe the Eustachian tube was swollen or something?

So I waited it out.  It was a little scary because the first day I noticed it (this was earlier this week, on Monday or Tuesday) I was actually having a hard time hearing by the end of the day.  I had my volume up around 2:00 (12:00 is the normal level) and I never, EVER move it past 12:00.  The next day it was a little better though…voices were still echoing a bit but my volume stayed stable all day long.  By the third day, things sounded back to normal again.

I never did have any typical cold symptoms, other than being a little more tired than usual, but I’m going to assume this was a health-related hearing fluctuation.

If anyone knows why hearing changes when you’re sick even once you have cochlear implants, I would love to know!  Or if you’ve experienced the same kind of thing, please leave a comment and share…I just find it really interesting that this happens (and I like to know I’m not alone, as well).  🙂

One Year

One year ago today I saw the doctor and it was confirmed:  I was profoundly deaf in both ears.  I consider yesterday, April 15, to actually be the ‘anniversary’ of my going deaf because I knew my hearing was totally gone on that day.  I just happened to have the doctor appointment on the 16th.

You know that feeling of waiting for the other shoe to drop?  Kind of a vague fear of a future catastrophe…not that you want it to happen, of course, but feeling like you just know it will happen someday?  For me, it was going deaf.  For 15 years I had this very repressed, subliminal fear that I would lose all of my hearing…and then what would I do?

Although I’ve lived with hearing loss pretty much all of my life, my hearing was stable from the time my loss was detected, at age 4, until 1993, when I was 28 years old.  I was so used to it, and wore the same hearing aids for so many years, that I didn’t even really notice it.  It never occurred to me that my hearing might get worse.  We had no idea why I lost my hearing to begin with but it was assumed that it was from a high fever when I had roseola as a toddler.  I figured it was a one-time shot and never gave it another thought.

Then in 1993 I suddenly lost the little bit of hearing I had left in my right ear.  It was shocking and unexpected.  Although I already had a severe-to-profound loss in that ear (so it wasn’t like I lost a ton of hearing) it was still an earth-shattering event for me because that was the ear in which I wore my hearing aid.  My left ear was considered good enough, with a moderate loss, to not need amplification.

In one fell swoop I was faced with the fact that my hearing loss was possibly progressive and might get worse in the future, and dealing with suddenly only having one ear to hear with since I had no ear mold or hearing aid for my left ear.  It took a good two weeks to get a new ear mold made for that ear and to be fitted for a completely new hearing aid, a bi-CROS system.  During that two weeks I actually tried to squish the old ear mold into my left ear and wear my current hearing aid, so that I could hear at work and during social events.  (I specifically remember a baby shower I attended for my cousin during that time, and how isolated I felt because I had no idea what anyone at my table was saying.)

Once I tried the new bi-CROS hearing aids, though, I was amazed.  The transmitter I wore on my ‘dead’ right ear transmitted sounds via radio frequency over to the receiver I wore on my left ear.  Once again I had the sensation of hearing from both ears, and my world normalized again.

The first couple of months after I lost my hearing the first time were scary for me because nobody could tell me why it had happened.  I wasn’t sick and had no warning signs.  They did a CAT scan and blood tests, tried me on a regimen of steroids to alleviate any possible swelling that would’ve caused the hearing loss…nothing worked and no causes were found.

After a couple of months passed and my hearing stayed the same, I stopped actively worrying that I would lose more hearing.  The fear sank to the far recesses of my brain and remained there.  Every now and then I would bring it out and toy with it:  How would I deal with further hearing loss?  Would I feel like life wasn’t worth living?  Would I become bitter and nasty to my friends and family?  Would I retreat and become a recluse?

At the time, I didn’t know anything about cochlear implants.  I learned about them in the late 1990s and even then, it seemed like they were only an option for people with no hearing at all.  From what I could tell, they would enable a profoundly deaf person to perhaps hear some loud environmental sounds but that was it.

Life went on and then the other shoe dropped.

In a way, there was a weird sort of relief that this had happened and I survived it better than I ever expected to.  I look back and say, “Oh!  I went deaf and actually dealt with it better than I thought I would.”  It’s over now…I can’t get any more deaf than I am, right?

I do still have this little fear that something might happen to my implants so they don’t work anymore.  Becoming deaf as an adult is totally different from growing up in a community of deaf people who use sign language.  Since my world is a hearing world, I have to adapt to that.  Dave and I have a version of sign language that we use and it works for us, but it’s not ASL.  I can’t benefit from a sign language interpreter, for instance.

For now, all I can do is assume things will continue the way they are and my cochlear implants will continue to work for me.

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