With the Parents

Well, I've been here with my parents, who are also relatives of D.Duck with low voices and bad colds -- although everyone's beginning to swallow most of the food in their mouths and speak with only a little bit in there, like a piece of gum or candy! :O)

Saturday, my dad took me to Ledo's Pizza, and I clipped my accessory microphone onto my headband up by my right ear -- hoping that it would help me to hear my dad (who sat across from me in the booth) amid all of the background noise by having a microphone on each side of my head. Sure enough, it worked wonderfully! I was able to follow along with our conversation pretty well -- certainly quite a bit better than I could've done with my hearing aides! :O) ... Dad has a slight Swiss accent, too, which made it a little more difficult to understand him at first, but I'm used to it enough now that he's no more difficult for me to understand than anyone else. ... Mom tends to talk a bit fast, so I do better with her when she slows down a bit. ... Their dog Jack barked once, and it sounded pretty much like a bark -- only lower in tone!

Sunday morning I tried clipping the accessory mic up by my right shoulder during Mass at my parents' church -- and it helped there, too! Fr. Steve's voice was a little louder with a bit more bass tone, and it was a wee bit more sharp and clear. ... Makes me wonder if I'd do even better with bilateral cochlear implants?! Something to maybe think about after I'm adjusted to the one I have, anyway. ...

Yesterday afternoon, we went to the mountains for a little hike ... I could hear some birds that sounded like papers(?) rustling, and some crows that actually sounded a lot like crows cawing! :O) ... I also heard an airplane that sounded like a helicopter. ... This morning, I finally recognized the really high-pitched part of the microwave beep (along with the lower-tone I've been hearing). ... Music is still a tremendous challenge, although I can hear some musical instruments occasionally (chimes, some type of guitar, always drums), and a slight fluctuation in tone. Most of the time it's still pretty static-y and monotone, although I can differentiate more if I'm familiar with the song and have the words to follow along with (either lip-reading or closed captioning) -- probably because I know what to expect I'm supposed to hear and what it's supposed to sound like -- just like I do better understanding speech if I know what the person's going to say or can lip-read or read the captions. With most of the music I hear sounds like rap music: I can always hear the drum beat, and sometimes hear what sounds like the record scratching -- and the voices seem to just be talking or yelling instead of singing. :O/ ... Oh, well, I'll keep listening!

Updates

From my e-mail to my family:

My sister wrote: "Shelly, you haven't updated your CI blog since the 18th. I keep checking, and come away disappointed as I really enjoyed reading about your experiences, no matter how small they may seem to you, it really gives me a lot to think about and learn, in addition to really enjoying your writing (you are good). I'm sure there are other people who have found your site that are patiently waiting for more. :O) Maybe if you could pick one day a week to update it, and inform everyone which day, then I wouldn't have to check so often hoping to find something new. Please, please, please?"

Mom agreed: "It is a good idea about the blog thing once a week and shelly let us know the day..."

Oh, my ... I haven't written anything because nothing has changed! :O/ ... I guess I could write at least THAT once a week -- and you could scroll down and see if there are any more posts you haven't read before that one. :O) ... How about Sundays(?) ... that'll probably work out the best for me. :O)

I've got my CI rehabilitation consultation scheduled for July 6th at JH! :O) ... Yeah! :O) ... I'm sure THAT will help a lot! ... Also, this weekend I may be visiting my parents ... so, I’ll definitely write about how THAT goes! :O)

Feeling Better!

Oops – haven’t written in a couple of days! :o0 ... My day Thursday was very LONG and I was very TIRED! And then my poor baby Jenda Kitty has been sick! :O(

My appointment with Jennifer went really well. She first took me into the soundbooth and tested my hearing with my CI . My understanding, from the chart she gave me, is that people with normal hearing can hear tones that range between 0-25dB and up. With my CI, I’m able to hear tones from 30dB and up – so, I’m hearing sounds at the level of only a mild hearing loss! :O) ... Normal conversational speech tones, Jennifer explained, are between 50-60dB – which means I have full access to all of the sounds of speech – all my brain has to do is learn to put them together and interpret them so they make sense! ... She spoke the words and phrases to me again (with her mouth covered), and I got them all right – I needed to ask her to repeat a few of them, but I got them right the second time around! :O)

Jennifer helped me understand that hearing speech and understanding it aren’t the same thing. I’m so used to turning the volume up so the sound is loud, because it was easier for me to understand people that way with my hearing aids. With the CI, especially, having the volume too loud actually distorts the clarity of the words. ... So, she re-mapped my CI with three new programs ... fine-tuning the one I liked best from before and using it as the starting program. I’m to try each program for at least a week, then go on to the next one if I’m ready. Each program, again, is a little louder than the one before, so I’ll switch if/when they become too quiet. If I don’t get to try all three, that’s okay, too.

She agreed with me that I’m at a slight disadvantage because I live alone and have no one with me most of the time to converse with or help me identify the different sounds. So, she’s going to set me up with a rehabilitation specialist (speech therapist?), who will evaluate me and set me up with an individualized rehabilitation program. They will contact me soon for an appointment, and hopefully we can get started within the next month. In the meantime, she gave me a handout with suggestions and websites and etc. that I can try out to practice listening/hearing. She warned me that it may be too early for me with most of them, and if they’re too complicated/confusing/overwhelming, I should wait for a week or so and go back and try them again.

Yesterday during Mass I noticed I was hearing a slight fluctuation in tones during the ceremonial songs – whereas before it was just monotone! :O)

I probably won’t be posting every day, now – just when something changes or something new happens. But ya never know when that’ll be! What fun! :O)

Deep Thoughts!

I noticed the birds at aqua-therapy still sound like ducks, but they’re hitting/rustling paper sacks now, instead of pipes – and someone fixed the leaky drips (I didn’t hear THEM at all)! ... My Jenda is definitely rumbling – and at the start of her train whistle (meow), I heard the "m"! ... People’s voices aren’t as deeply low-pitched, but still have colds, mouthfuls, bubbles, whistling wind, and Donald Duck on top! :O)

Other things are beginning to sound a bit more natural ... i.e.: my typing on the keyboard, potato chip bags, footsteps, the water running in the faucet, Jenda purring, cars and other vehicles, doors closing, my electric toothbrush, some music. ... Singing voices are still a huge challenge! ... I still hear LOTS of quacks, whistles, banging noises, bubbling noises, rings/chimes, and static everywhere I go ... I still whistle when I breathe! :O)

I’m really tickled with the website I found last night! I’ve started reading a little bit of it, and it’s already very comforting to me! ... I’ve also remembered that my CRS/past meningitis affected my brain in that I do tend to think/process things and grasp/learn new concepts a bit more slowly than others – and this CI is certainly an extreme new concept for it! :O) ... Thankfully, once I DO grasp the concepts, I do VERY well with them! I just have to have patience with myself – which is something I’m not very good at. In my mind, I have to be a living miracle and inspiration – exceeding everyone’s expectations (especially my own) – in everything I do (especially medically)! It’s really difficult for me to accept that with the CI, I may NOT do as well or progress as quickly as some of the people I read about/meet! :O( ... I do realize that I’m at a disadvantage: since I live alone (with my kitty cat) and don’t have a job – I don’t have anyone with me who can help me identify the strange new sounds I’m hearing or practice talking with me in different environments. While I’m doing my best to compensate, I’m sure this will prolong a bit the time it takes for my brain to adjust. I need to accept that that’s OKAY and try not to compare myself with anyone else! :O)

Tomorrow is my third mapping/activation at 9:30am! ... I can’t wait! ... I’ll let you know how it goes when I get home! :O)

Purrs

I switched to program #3 today, but things don’t sound much different – other than louder! ... However, with the sensitivity turned up, Jenda’s purr sounds more like a rumble now than static! :O) ... I’ve spent my entire afternoon and evening trying to find accessories for CI’s and more activation stories on the internet, but to practically no avail. ... I’m beginning to feel a bit frustrated and overwhelmed with all the weird sounds ... but I’m doing my best to stay optimistic and not lose hope and confidence that everything WILL eventually sound better! :O)

Oh, I just found a website with a lot of stories: http://www.cihear.com !!! Yeah! :O)

Birds and Music

I returned to aqua-therapy this morning ... the silence without my CI while I was in the water was actually a bit refreshing – maybe I’m more overwhelmed than I want to admit! :o0 ... I listened to the hammering, pipe-tapping, water drops falling and quacking noises from the birds, again – the quacking sounds a bit more like Donald Duck, too, now, instead of a real duck (although there still weren’t any ducks there!) :O)

The telephone buzzed three times before I realized what it was and answered it – but this time whoever called didn’t want to wait for me to put on my hearing aid ... must not have been important – they didn’t call back, either!

I’m beginning to hear a slight fluctuation in the tone of my voice when I sing to myself! ... I’m beginning to wonder if I’m not picking up a distant radio station – everywhere I go, I seem to almost constantly hear some faint music and static and even voices (which I can’t understand what they’re saying, of course)! :O) ... Will have to ask Jennifer when I see her on Thursday! Hee! Hee! :O)

Spiritual Waters

I must TRULY be a water person – I keep having Mass in the ocean (hee! hee!) ... all of the music there sounded like people were blowing bubbles in the water or gargling! I even knew all of the songs – but I had to lipread my friend next to me while she sang in order to identify the words! ... I DID hear the chimes during the Eucharist, though! ... I also heard the resident geese outside after the service – and they actually sounded a lot like geese! :O)

Donald Duck is still present with the low, stuffed up, full-mouthed, bubble-blowing people – and the wind blows a lot, too – indoors and out! ... I hear a lot of drums and banging on pipes and whistles and static, still, too! ... But I DO seem to notice MINOR changes every day – so I’m holding on to my hope! :O)

Donald Duck

Since Donald Duck presented himself with Fr. Mike yesterday, he’s been speaking along with everyone else today – even my 14-month-old godson sounded like Baby Donald! So, everyone now sounds like they’re talking in a low-pitched voice, with a bad cold and their mouths full, with Donald Duck (or Baby Donald!) speaking simultaneously along with them! And I sound like Goofy and Donald speaking simultaneously! :O) ... I’m hearing more bits and pieces of music – so that I can TELL it’s music – but the WORDS/LYRICS still sound like static or monotone, drawn-out words. When I sing to myself (or to Jenda), there’s a lot of minute gaps where I don’t hear my voice at all!

I decided to go ahead and switch to the second program today ... the speech with the first program was becoming too soft. (I was outdoors at a kids’ baseball game, and tried turning up the sensitivity level -- but that just enabled me to hear the wind louder!) Sure enough, I’m hearing people’s voices better again with Program No. Two! Everything else sounds about the same as yesterday, although Jenda’s purring sounds more like static, now.

Mass In the Water!

Today I went to a Mass in the water! Fr. Mike no longer sounds like Darth Vader/R2D2-Combo ... his voice still sounds very deep and with a major cold -- but this morning whenever he spoke it sounded like he was not only speaking with his mouth full, but blowing bubbles in a large body of water – as the wind whistled around us! :O) ... Again, I struggled not to laugh during communion as the vision of Jesus doing the Last Supper under water popped into my head! And as I was talking with him after the service, I began to hear a bit of Donald Duck in Fr. Mike’s voice as well! :O) ... Everyone else’s voice still sounds just very deep and with a major cold and like they’re talking with their mouths full – but the Darth Vader/R2D2-Combo effect is gone. I wonder if I heard more in Fr. Mike’s voice today (the bubbles, wind, and Donald Duck) because I’ve listened to him the most and have had more of a chance to adjust to his voice?

Music is becoming a wee bit more recognizable as music – in fact, I recognized the Netzero
jingle on my computer when I connected to the internet tonight! My own singing, though, sounds NOTHING like music – all I hear from MY voice is static, a few sounds here and there like I’m about to throw up or something, and a bunch of gaps in between – and a definitely longer split-second delay between when I hear it and when I sing it! ... I sang to Jenda in the car when I took her for a ride – and she meowed at me quite a few times for that! Now she sounds a little less like a train whistle and a little more like a kitty cat! I also heard her purr today, for sure – and it sounds like leaves rustling/static. :O)

Several other things are beginning to sound a wee bit more natural, too: the water pouring from the faucet; the toilet flushing; the cars, etc., on the road; the telephone ringing; the computer keyboard as I type ... but just a WEE bit – only enough to notice a difference. ... I’ve only turned the volume up half a notch today, so I may not switch to the next program as soon as I ‘d planned – I was going to do it tomorrow afternoon, but I may wait until Sunday ... we’ll see. :O)

Activation #2!

This morning everything seemed quieter, again, so I turned the volume up another notch. This is the level that Jennifer told me – if I found I was keeping it there – that I should switch to the next program. I wasn’t sure if the loudness/quietness variation was due to the differences in locations, however – so I continued to adjust and experiment with the volume and the sensitivity levels. ... In the van on the way to the hospital, I noticed the jet planes had disappeared and all the other vehicles just needed new mufflers! A motorcycle drove past and it actually sounded very similar to a real motorcycle! And I could hear a rhythmic beat on the radio and some "twang" noises instead of just static! :O)

At the hospital, I continued to have difficulty hearing things – speech in particular -- and turned the volume up ANOTHER notch! At lunch, I decided to go ahead and try the second program – but when I did, it wasn’t much louder than the first, and I had even MORE trouble hearing people’s voices! Although, sitting in the waiting area before my appt., I kept hearing one voice that was louder than everyone else’s, but when I looked around to see who’s lips were moving – no one’s was! :O/ ... I finally spoke with a lady who sat down next to me, and she told me it was the guy on the intercom! ... Funny I could hear THAT better than the people in the same area! :O)

Jennifer repeated the same adjustment things she’d done on Tues., and gave me three new (increasingly louder) programs to try for a couple days each. She also tested me on my speech recognition ability. First, she spoke three individual words while I could lipread and understand them – then she covered her mouth and said them in random order, and added three new ones. I got all of them right except one of the new ones! :O) ... Then she did the same thing with three phrases, adding three new ones – and I got all of THEM right except one of the new ones! :O) ... She told me that was REALLY good for it being only my third day! :O)

On the ride home I noticed all of the other vehicles had gotten their mufflers fixed/replaced! The driver’s cell phone made more of a "ring/clang" than the "buzz" I heard Tuesday, and the radio put forth Indian battle cries and more twangs and rhythmic beats – definitely sounding a bit more like music! :O)

At home tonight, I heard a series of loud rolling buzzes – which I figured out was the telephone! I answered it with: "Just a second, I need to put on my hearing aid!" – which I did, and discovered my battery was low – and it turned out to be a telemarketer! Hee! Hee! :O) ... Then my sweet Jenda kitty opened her cute little mouth (finally!) to request that I play with her – and out came what sounded like the "ooooooooooo" of a train whistle (only much softer)! :o0 ... So, I guess my cat is musical, too! :O)

People’s voices still sound like Darth Vader/R2D2 just beginning to get over the severe cold they’ve had for the past two days – and I’ve decided MY voice sounds like Walt Disney’s "Goofy" character! :O) ... I still hear my voice a split second after I say the words, but Jennifer told me that’s because my brain doesn’t recognize it as MY voice, yet, and it will merge as my brain adjusts!

My third activation – or "mapping", as it’s otherwise known – will be a week from today on the 16th of June. In the meantime, I will continue to listen to as many things as possible (not at the same time, though!) and try each of the three new programs Jennifer gave me – and I’ll post anything new or different I hear – or if I figure out any more of the unidentified sounds! Oh, by the way, I just realized that my coffee percolator keyboard now sounds more like just a loud keyboard! :O) ... I’m so in awe of how wonderfully the brain adapts to new things – with seemingly little effort on MY part! I’m just giving it as much sound and visual input as I can, and it’s magically adjusting the new information to what it’s supposed to be! :o0

Catholic "Vaders" and Animals!

I want everyone to know that SOME of Darth Vader’s family are on the "Light" Side! :O) ... Today I went to Mass with some of them ... Fr. Mike "Vader" led the ceremony! I really had to contort my face to keep from laughing as Fr. "Vader" spoke so eloquently and meaningfully the words Jesus said during the Last Supper – and I think I gave him a funny face when he handed me the communion wafer! :O) ... If there was ever ANY doubt that God has a great sense of humor ...! :O) ... Fr. Mike laughed when I told him about it afterwards – HE has a great sense of humor, too! :O)

I’m still having a lot of trouble comprehending the speech today – still sounds about the same as yesterday. I’ve noticed, though, when I’m lipreading, that I AM hearing a lot more of the letters/syllables/sounds of the words – whereas before I think I was filling in the blanks a lot more! :O) ... Music/singing I’m still not able to distinguish from talking – other than the sounds are longer/more drawn out. ... I did cheat and put my hearing aid and PA(FM) system on for the scripture readings and the sermon – didn’t want to miss those! :O) ... It’s much easier to understand the words when I know what the person is going to say – the ritual part of the Mass and the Rosary afterwards were pretty clear for me! :O)

After Mass, I went to Walmart to return something, and decided to walk around inside the store and see what I could hear. I could hear someone speaking on the loudspeaker every once in a while – sounded like maybe commercials for products? I could hear people’s voices that I went near, but couldn’t understand the words (although I didn’t try too hard, either!). ... I’m thinking the jet plane sounds I’m hearing on the road are from the vehicles around me – I heard them again today in my own car! :O)

I’d promised I’d stop by and say hello to my aqua-therapist, so I did that next. She has a bunch of bird feeders in her yard, so I sat near them for a while to see if I could hear the many different birds that are always there. ... I guess birds really ARE industrious creatures ... I heard what sounded like a lot of hammering and pipe-tapping and water drops falling (all from the direction of the birds)! :O) ... And a LOT of quacking – although there weren’t any ducks! :O)

On the way back I stopped at a therapeutic riding stable to see if I could hear the horses! :O) ... It was really hot outside, so all of them were in their stalls in the barn. I went in and petted and talked to them all, but none of them offered a neigh or a whinny or even a snort (well, at least, I don’t think they did)! :O) ... They were very nice, gentle, QUIET horses! :O) ... I even tried turning up the "sensitivity" control quite a bit ... but no luck. ... Oh, well, I’ll have to go back when they’re being fed or groomed or ridden! :O)

I watched a couple of TV shows this afternoon, and the people sound just the same on there as they do in person – although I understood them better because I had the captioning on! :O) ... Jenda still hasn’t meowed at me that I know – I haven’t heard any sounds that I could attribute to having come out of her cute little mouth, anyway. :O/ ... Oh, well, I’m sure she’ll say something eventually – she CAN be quite talkative! :O)

Tomorrow I go back for my second activation ... can’t wait! :O) ... Medical transportation will pick me up at 7:15am – my appointment’s not until 2:30pm, so I’ll have about 5 hours to wander around the hospital and listen to everything there! Maybe I’ll try reading my book aloud to myself or something ... MY voice sounds the weirdest of all! :O) ... I seem to hear the words a split second after I say them – not right at the same time! :O)

Well, my keyboard percolator has been going a long time ... I’d better quit before my coffee runneth over! :O) ... I’ll post again tomorrow night! :O)

I'm an Officially Activated CI-Borg! :O)

Wow – what an amazing contraption! :o0 ... :O)

I arrived at Johns Hopkins three hours early, as my vanpool had several other people with appointments somewhere as well – so it was a long wait until my appointment with Jennifer, the CI Audiologist! When the time finally arrived, she took me into her office and told me that the CI manufacturer had recalled their clip-on power cells for their BTE processors, so I’d just be starting out with learning to use the body-worn processor (I’d ordered one of each) – which is fine with me ... I do better with one thing at a time, anyway! :O)

Jennifer first put the headpiece on my head and adjusted the strength of the magnet – then she had me figure out where to put it myself! She showed me all the equipment and how to connect and disconnect everything, then she hooked me up to her computer and my new world was opened up! :O) ... It began with a series of beeps which got increasingly louder – I was to tell her when I first heard them, when they got too loud, and when they were most comfortable – and with different pitches. She had me turn my hearing aid off, and she began talking to me – boy, did she sound funny! :O) ... I’d expected her to sound like a cartoon character, but to me she sounded more like Darth Vader (not his breathing, but when he talks through that mask) – only without quite as deep a voice! :O) ... She made some adjustments and then her voice still sounded like Darth Vader, but combined with R2D2 – or like on cartoons when you have a "BOING!" sound when a character bounces! :O) ... Jennifer said that’s the high and low tones I’m hearing – even the different letter combinations in words that I’m not used to hearing! :O)

They gave me a little binder instruction manual for everything, and Jennifer next had me start reading through that while she made some more adjustments to my processor with her computer. I heard a bunch of hammering noises, increasing in volume and varying in pitch like the beeps – but all I had to tell her this time was if they got too loud (they never did). :O) ...

Then she spoke to me again, reading through a list of words several times while making more adjustments to set up two different programs. I had to tell her which sounded more comfortable to me – the "cushioned/smoother" Darth Vader/R2D2-Combo or the "sharper" Darth Vader/R2D2-Combo (they were SO similar)! I told her I liked the former, but my comfort zone was with the latter because I’m so used to listening to things loud and sharp with my hearing aids in order to hear/understand them! She set them both into my processor, but is having me begin with the first "cushioned/smoother" program. As I get used to this program, I will be needing to turn the volume up because it will get quieter as my brain adjusts. When I find I’m keeping it at a certain increased level, I’ll switch to the second "sharper" program and get used to that. :O)

Talking on the phone and using the accessories for the TV and stuff we’ll do later, Jennifer said ... it may be a few weeks yet for the phone. We’re going to go in small steps and take one thing at a time ... these first couple of days I’m just going to practice listening and work on getting used to all the different sounds I hear and trying to figure out what they are! And adjusting to the volume levels. I’ve already turned the volume up a notch since I left the clinic! :O) ... I can have my hearing aid on my ear for emergencies only – I’m to use the CI exclusively as much as possible so I can adjust to it more quickly. :O)

Riding home on the van I tried to listen to everyone and everything! People’s voices still all sound like Darth Vader/R2D2-Combo – I can’t differentiate between male or female! I COULD hear the voices, though (I couldn’t understand most of the words, however) – so I should never inadvertently interrupt someone again because I didn’t know they were talking! :O) ... The music on the radio varied between soft static and ice-cream truck music and boings-without-words! I kept hearing what sounded like a jet airplane or a helicopter – which George (the driver) helped me narrow down to either the air conditioner or the vehicles passing by! I heard the loud crinkling of my Sun Chip bag (and the LOUD crunches of my Sun Chips!), the tinkling of the ice in the cup of someone sitting behind me, and the funny ring of the driver’s cell phone! :O)

At home I’m hearing all kinds of funny noises! My kitty Jenda hasn’t meowed for me yet (that I know) – but, if I heard her purr, it sounded like leaves rustling! :O) ... My brain must really be music-oriented, because most of the sounds I’m hearing sound like they’re being made with a musical instrument! Playing with Jenda with a feather attached to a strip of cloth on a wand, tapping it against a paper bag and a newspaper, sounded like a kids’ drum (soft) and raindrops falling on a puddle (softer) – and her running across the floor and jumping on things was a bit louder drum – as are footsteps! I bumped into a few things that sounded like clangs or bells! Even my breathing sounds like it’s through a horn/whistle of some kind! ... The kitchen faucet sounds like a vacuum cleaner, the toilet sounds like a loud who-knows-what-crash! My fingers typing on the keyboard sound like a coffee percolator! :O)

Tomorrow I’ll go to Mass and see how I do there with just the CI! :O) ... It will be funny telling Fr. Mike he sounds like Darth Vader! (Ha! Ha!) :O) ... Maybe Jenda will meow at me so I can hear her beautiful voice! :O) ... I’ll write again tomorrow night and tell you what I hear! :O)

Activation Eve!

Well, tomorrow's the big day! :O) ... Medical transportation (George, my favorite driver, too!) is picking me up at 8:15am -- my 1st activation will be from 1:30-3:30pm! :O) ... I'm SO EXCITED -- it'll be a miracle if I can sleep tonight! :O) ... I'm not expecting to be able to make sense out of anything I hear right away -- and I'm expecting everything to sound funny and confusing and overwhelming -- but I'm excited for the opportunity and ready for the challenge! :O) ... I'll post again tomorrow evening when I get settled back at home! :O) ...

My big bandage: frontview 

My big bandage: sideview 

My incision and punk hairdo!