My first bionic Christmas, anno 2009

Christmas is creeping up on us again

This year it will bring a whole new dimension for me. I can engage in social activities with my family without “burning out” before the presents are handed out by Santa Claus. I look forward to this years Christmas, as opposed to the last few years where I dreaded the oncoming Christmas season.

Hearing-wise, my brain is slowly “repairing” the sound. But it’s still hollow-sounding, glassy-like and voices still don’t have their distinct signatures. But yesterday I could almost tell the difference between my youngest sisters voice, and my mothers. I say almost, because I can tell there IS a difference, but I just can’t tell WHICH one of them are speaking without looking at them. Yet! mind you

I started listening-training many weeks back, but wasn’t happy with the first therapist, so I made arrangements to get someone else, and this time I am happy. The first session with the new therapist was just like I was looking for, minimal waste of time small talking, and very methodic and systematic testing and a some real challenging sounds to figure out, and hopefully learn from. I’m up for a new session tomorrow, and then another one right over into the new year. I think this training comes at a good time for me.

The last balance-organ-snafu ordeal is behind me, things are feeling better, just slight imbalance at times. I feel ready to take on the things that needs to be taken on. I want to get back to normal life, even though I have forgotten how THAT was like…  I have to admit, I’m a bit scared and anxious to go empty again. I’m holding back, wisely I hope, but at the same time, I don’t want to hold back too much, stopping myself from getting to where I want to get…

I had real ambition training with audio books, but something has stopped me from engaging actively into it. I started with an English (Norwegian is my primary language) audio book: Ken Follet: Pillars of the Earth. That was two mistakes: firstly, listening to English should be secondary to listening to my first language. Secondly, it dawned on me that I actually have READ this book way back! It took a few pages to remember, but when Toms family met this strange woman and her son in the forest, a suspicion arose in me. And when Agnes a little while later dies from childbirth, I was sure. Tom and this strange outlaw woman in the forest will meet again later. OK, it is a very good book, and I will read it again, in order to pick up the sequel later on (I really want to read that one, and think it will be more enjoyable having the first one fresh in mind). but I need more motivation to work with an audio book.

So, I will pick up a Norwegian book I haven’t read before, borrowed from Movale, a friend of mine. This book is a classic in Norwegian literature, describing the development of the historic and cultural foundation on which today’s Norway is built on (through the story of one family). It is written by Roy Jacobsens and it is called “Seierherrene” (meaning “The Victors” I can’t find an English translation of that book   ).

I think I subconsciously have been avoiding working TOO hard with sound. I remember I read on one of my good friends blog that it is important to find audio-training that doesn’t exhaust you too fast. I can totally back up that statement. Our brain needs TIME to sort out the sounds. Yes you can help progress by actively listening and try to sort out the sounds, but doing that too much will also be counterproductive. Within a short time it is a real danger that your brain will cease to have the energy that is necessary to do the subconscious and automatic processing of sounds. Also you need to preserve SOME energy for the people you have around you and who wants to talk to you

I too, think it’s important to find ways to listen to massive amounts of sound in a passive and relaxing way. Then, when you talk to people, you can use that extra gear… That is training enough, if you have people around you a few hours every day.

My beloved girlfriend bought me a new set of headphones for Christmas: “Creative Aurvana X-fi” (review here). (we are like children and can’t wait until Christmas to open our presents   ). I can’t say that I’m in nirvana, sound-wise, but it was definitely a very nice boost in sound-quality for me. Also, knowing that I have very good sound input, close to optimal, relaxes me. I can’t do much more about that bit now. Now it’s just up to my brain and myself. My brain does the hard work with the as enjoyable sounds as possible I need to feed it with. Spotify is a great thing

(I just understood almost the ENTIRE commercial break: “Hi, this is Jonathan from Spotify…..” hooray! Progress! Yes, I have used Jonathan as a test to see if I make progress.)

Apropos music… It’s so hard to describe the progress I have, but have to give it a go anyway: Bass is coming into place. Bass is the engine of the power in the music and therefore is essential to musical enjoyment. I can hear voices much better; I’m able to distinguish the various instruments, I am pretty good at identifying which kind of instrument is being played (in music I know somewhat from before). Voices have more melody in them. I can hear if the voice goes up or down, if it’s one or many voices simultaneously. I’m listening to much more various bands (my old favorites) now. It’s instantly recognizable, and lyrics are coming fast back to me   BLISS!!!

There is something about the brain-halves… I read somewhere that the left brain-half is pretty much working with semantics and understanding context, while the right brain half is dedicated to the more spiritual, artistic, emotional and colorful aspect of sense-inputs.

OK; this blog post is getting too long, time to round off: I’m focusing much more on listening to voices WITHOUT actively deciphering the information. I’m trying to teach my brain to do it automatically. This refers back to my previous bog post about “Rewiring my brain – altering the language system”. Also my new audio therapist suggested I focus more on that (she did not know I wrote that last post!). I then got the confirmation I needed; I’m pretty much thinking and handling things the right way…

I want to congratulate FUNNYOLDLIFE with her life-altering decision to go for CI, and wish her good luck with that!

Merry Christmas, and a Happy New Year, to all my readers!

Rewiring my brain – altering the language system?

How a person understand and interpret speech is an extremely complex process involving the synaptic responses to the physics of sound, neural activity in the nervous system and brain, and ultimately the processing of those neural impulses in various regions of our brain.

Scientists have started mapping those regions of our brains by watching what happens inside the brain through MRI, PET or other means of scanning technology. Also, people who have had damage to their brains have helped us gaining more understanding about which parts of our brains does what.

Speech and language, meaning the vocal transfer of meanings, feelings, ideas, ideologies, experiences and everything else human beings exchange and communicate, are processed through various parts of our brain.

Some of the components of speech and language processing in our brains are about (I’m sure there are many, many more, each specializing in it’s own incredible way!)
1. acoustic processing
2. visual processing for lip reading
3. phonology
4. semantic processing (vocabulary)
5. short- and long term memory (previous context, experience, reference)
6. visuoauditory, meaning that the brain both processes and somehow merges each individual sensory input (bisensory – vision and hearing); keep in mind, we don’t fully understand everything about our brains functions yet.
7. contextual processing
8. “alternative contextual qualified guessing” (you might also call it fantasy   ) when all other understanding strategies fails, it’s the last attempt of understanding, and results in either a question, embarrassment or success

OK, that was the crash course in what we know about how our brains processes speech in a oversimplified manner.

Taking that info into account, think about what happens if the signals changes radically? What happens when a hearing-aid user, de facto deaf (unable to comprehend speech without the sensory aid of hearing aids, or contextual aid of sign language, lip reading or written text), is fitted with a CI or two?

In my case: what happens when I have suffered from “recruitment” while using my hearing aids for many years, and then suddenly both the recruitment is gone, AND the perceived frequencies have shifted totally out of it’s previously normal neural pathways starting with the hair cells in my cochlea.

My implant feeds electronic impulses to the part of my cochlea array of left-for-dead, broken hair-cells, while the previously still somewhat functional part now is left abandoned, not receiving any kind of stimuli anymore. (it’s like playing a piano on the octaves situated on the far left side for your whole life, and suddenly someone moves the entire piano so that you now sit on the far right!)

Well, obviously my brain has some work to do! The rewiring of the neural pathways are one thing, and the brains processing are another. I believe we can agree that the neural rewiring both in our nervous system, and in our brains (which I agree, is in fact part of our nervous system) is about new synaptic paths forming, adjusting our nervous system to the new sensory reality.

But what about the brains’ processing of these sensory inputs? The part of my brain that performs acoustic processing adjusts to the change in frequencies, the new auditory virtual reality slowly becomes THE reality, due to the lack of, and loss of the old auditory reality.

The phonology of all words have changed, how does my brain cope with that? Rewiring, relearning.

The short-term memory function now has to deal with input data that are totally new in appearance. It doesn’t sound like before. A streetcar doesn’t sound like a streetcar. A woman in high heels sound like a carpenter hammering down a nail. A kid laughing sounds like an animal dying. A kid crying sadly sounds like a anger fit.

Do you see where I’m getting at? The change in the quality of the sound perceived, also changes the contextual package, ie. what my brain interpret that specific sound to be, also decides my initial contextual and sometimes emotional processing. So now my contextual database also has to be reprogrammed.

The long term memory databank contains data that are now invalid. My mothers voice doesn’t match her voiceprint in my brain. All the people I have learned to identify by their speech patterns (how they pause, how they etc) now needs to be reprogrammed. It’s like having to change your entire music collection of vinyl to low quality compressed digital music (like computerized music in the MP3 format).

I will forget the old information, and fill it up with the new. All as the “Borgs” in Star Trek says: “You will be assimilated.”

If the part of my brain that does the acoustic processing changes it’s algorithms, I assume it’s fair to expect a change in the output from that process, consequently leading to the fact that the part of my brain that is the recipient of of the processed audio, now being “re-digitalized”, also have to change THEIR algorithms!

In that way, my entire language system is presently under a complete and heavy and thorough modification.

I have noticed this in the following ways:

I can “hear” better, but I have problems remembering the first part of the sentence that I hear, OR I only perceive the first part, my brain skips the last part of a sentence. I deduct from this “brain rewiring hypothesis”, that my short-term memory is having trouble storing the strange sounding words in it’s flash memory. The input data kind of doesn’t fit properly.

The other parts of my language system also sometimes suffer from overload or fault, causing a crash. Like when ambient noise occurs, and the voice I listen to drowns in that noise, my contextual and visual processing brain part needs to take over, but since I have been so focused on the auditory processing (due to the new and strange sounding quality), the take-over comes just a little bit too slow to be able to follow the person talking…

Think of this last paragraph like trying to follow an intricate discussion about a complex issue while having two or three kids climbing all over you, demanding attention. Sometimes they DO get your attention, and what happens then with the discussion you were following?

That’s when my “alternative contextual qualified guessing” kicks into gear

And this time I won’t even get into the emotional and psychological aspect of this brain-rewiring process that I’m currently undergoing…   I think each and every one of you who reads this can imagine the psychological and emotional implications for yourself.

Some things are best left unsaid?

(This was supposed to be) Log no. 11 – day 61 (or so) – 3 month mark (, and AB is acquired by a European holding company; Sonova)

Whew! I was right in the middle of the process of writing a new post when it hit me: I woke up Sunday morning, and had severe vertigo and nausea. I had trouble getting to the bathroom, and when I got there I was so sick I had to puke. It took a few hours before I realized that it could be connected to the implant, and that it would be a smart move to call the hospital. Once thought, action was made. They wanted me to come in for a checkup, and when I got there, I was immediately admitted for observation and tests.

Two days later I was released and relieved. I was much better. They found no infection, and the most probable diagnosis to my illness was “benign paroxysmal positional vertigo” (BPPV) which can affect anyone. I recently had a new mapping, and up until the attack of this BPPV I felt as if the sound had gotten worse (after an initial wow-sensation and a feeling of it being much better).

These following thoughts of mine are merely theories and are in no way substantiated by any data or real tangible facts: there is a possibility that there was a minor leak from where the implant enters the cochlea, and that the sudden drop in the pressure inside the cochlea/vestibular/canal labyrinth caused the symptoms I experienced. I have very much the same balance/vertigo feeling as I had in the weeks after the implantation. It’s not very bad, but it’s ever present, and it is only felt when I actually move my head. I sleep more, and have more troubles fixating my eyes to text or smaller objects. I do exercises every day.

OK, enough about that, now over to what was meant to be my original post:

Date of writing: 18.11.09

Got a new mapping yesterday, and that was an interesting experience, both during and especially after. Evidently AB has upgraded both the console software as well as the CI-software. Yeay, I have been software upgraded for the first time in my life!

They had added enhanced ability to control the width of the sound waves produced by the Harmony processor. The software has two automatic settings, and as an extra feature, the possibility to manually manipulate these values. In short it is about how much energy that the sound waves deliver. The amount of energy is calculated by a simple (very simplified) formula: “Total amount of Energy” = “Sound wave width” x “Sound wave height”. This is sound physics ABC.

The shorter the wave width, the more waves per second is possible to expose the cochlea nerves to. That is a good thing, it means more information, and perhaps closer to mimicking mother nature? The downside of more narrow waves, is that the height has to increase similarly. If not increased height, the total amount of energy delivered is less, and it will be perceived as lower in sound strength (ie. lower volume). In order to compensate for that perceived low sound, one has to increase either the width or the height. If the height is increased too much, the sound may sound distorted or otherwise imperfect (I don’t have real data on this effect), and also the impedance will get too high, meaning that the battery will have to deliver more power to push trough the sound, thus making each recharge lasting for shorter time…

Anyway, we use one of the automatic settings, and went with the wave width that the software recommended based upon the historical data about my CI-development. Aside from that techie nerd stuff, we lowered the high-pitch sounds, increased the bass and middle area. I have no problems hearing the high pitch sounds, and I understand what they are, mostly. What I have trouble with is voices, sounding high-pitchy still, and bass-sounds in music. Program 1 is based on maximum level on all frequencies, program 2 lowered high pitch and program 3 is same as 1 without AGC (yes trying to figure out the impact of AGC again… [Edit: Had to trade program 3 back to the old program 1 after the incident in order to rule out the possibility of some weirdo implant-induced disturbance to the balance. Not so.]

On the way home, in my car, with the music blaring helped by my subwoofer, I listened to my “control”-music, and could actually pick up a few bass-guitar sequences for the first time! That was good I have been missing that aspect of the music. Voices sound better, music sound better, and irritating sounds (mostly from high pitch sources) have subsided a little bit.  We did a little test to see if I could distinguish between two words that was impossible for me to distinguish prior to this mapping: (they are Norwegian, meaning “nun” and “many”, the important thing to have in mind here, is that both words have two syllables, and they are very similar in pronunciation, despite their very different meaning) nonne ['nɔnə] and mange ['mɑŋə]. I caught the right words many times enough to say that this mapping fixed the problems for me distinguishing between [n] and [ŋ]. Also the difference between wovels like ɔ and ɑ, has been really hard to pick up. Don’t know yet how of if that has improved. (have a newly throat operated 4 year old, so haven’t had the luxury of training properly the last week…)

I’m now leaving the post-CI-calendar and go back to the regular calendar, too much to keep track of, better to simplify things

Sound, sound, sound

Sorry for not updating so often anymore, but life is happening, and I have other very life-normal important things to focus on, too

Sound is getting better and better in my CI. I need a new mapping, and ordered a session for it and got it fairly quickly. Unfortunately I didn’t receive word about it before it was too late. I mean, who depends on snail mail anymore??? I got the previous session organized via mail, but this last was purely physical, and that bummed me   (I live a lot with my girlfriend, see   )

So, that gave me a 14 days extra wait, which is rather frustrating since I’m on top sound and need to both increase levels and adjust them some. But I have used the “worst” program of them all, the one with the most high pitch-sound. That has drained me psychologically, I had a few mood swings etc, but got through it pretty good. I did that because I want to work on my CI-ears ability to absorb as much information as possible. And the high pitch sounds are the sounds that are the hardest to “re-map” in my brain… I still have pretty weird sound compared to hearing aid, but already I’m starting to forget about that… To me that means that normalization is in good progress!

Hearing aid has been taken off, and is now retired semi-permanent. Will probably use it now and then, so that my left ear doesn’t forget where the neurons for my auditory nerve signals are supposed to go…

I just applied for CI number two at Rikshospitalet. Crossing fingers about that, hoping for the best and fearing the worst.

Music is improving day by day in small steps. Last night I turned on some music for the first time with my CI. I haven’t heard this particular album in like 5 years or so, but it was recognizable and I even managed to pick up a few words from the lyrics here and there. I no longer have any doubts that the music will be good again, I’m pretty sure of it. It just depends on how much I work with it, how I program the CI and that I am patient enough.

On a personal level, I’m feeling that the drainage of earlier times hyperfocusing is becoming less straining. I still hyperfocus some times, but not nearly as much as I used to with hearing aids. I’m becoming more and more comfortable with my CI and trust the sounds that I perceive… The hard part now a days is that the sound itself is exhausting because it’s so overwhelmingly artificial, ie. high pitched.

But given time that will normalize even more, and my strain will ease up. Looking forward to that.

Log no 10 – day 41 – Different kind of tired, stress, and phantom sounds mixed with tinnitus

Last 2 weeks I had a throat infection, giving me sleeping trouble at night, due to irritation in the airways causing a lot of coughing. But two interesting discoveries emerged from this condition.

The first thing was that since I got my CI, I am, of course, still tired from the strain of learning to hear again. (I’m working regularly every day at improving my hearing skills!) BUT, having this throat-infection was a revelation to me. Before CI, I’d be out of play, so to speak, ready for decommission, not having enough strength to do much more than just cope with everyday chores like making food and taking care of my own basic needs. This time I felt as if my tiredness was different. It wasn’t so all-consuming and forcing me into life-support mode. It was as if my brain got enough oxygen this time, compared to before CI where my cognitive skills took a severe hit when suffering very mild conditions like infectious throats or other normal mild seasonal illnesses.

Recently I have come into contact with people suffering from CFS – Chronic Fatigue Syndrome (aka: Myalgic Encephalomyelitis (ME)), which is a bit of a mystery illness, but a very real one, where those who suffer from it experience severe fatigue. The symptoms concerning the fatigue reminded me very much of my own condition prior to the CI-surgery. Not to the same extent, of course, but the effect of the fatigue that affected cognitive skills, memory and other important brain-functions that has an impact on social life, among others, reminded me very much of my own condition…

I felt a wee bit sick, due to the sore throat and coughing,  of course, but still had the energy to do things! And energy to take better care of my son and myself. It is still unclear whether this is a trend that will continue, or a one time experience. But I certainly feel hopeful, and think that this can not be a coincident. I believe that this was the first real sign that I am about to bounce back to good old me

It also leads me to new questions such as, how bad did the “recruitment” really affect me? I guess the future might or might not tell me a bit more about that… I’m having a growing suspicion about it affecting me a great deal…

The other thing was the “new” tinnitus in my implanted ear. I discovered that every time I coughed, the sound increased in strength, and a little while later, it subsided back to it’s former level. A very noticeable phenomenon. I did a test while being very relaxed and about to fall asleep. I hyperventilated, and yes, the phenomenon reoccurred! I hyperventilated even more, and the event occurred even longer and stronger. That leads me to the conclusion that the tinnitus, if I can call it that anymore, in my implanted ear, is caused by an increase in either oxygen in the blood, or an increase in the blood-flow itself. That plays pretty good into what is generally known about tinnitus, that stress causes tinnitus to get worse. I believe stress is a condition where some glands in the body produces hormones that triggers certain reactions, such as elevated heart rate? Link to a Washington Post article on the subject of stress and what it does physically to the body.

Anyway, these are exciting experiences that I think, given time, will turn out to be advantageous to me. In other words; good news The “tinnitus” in my implanted ear will eventually disappear, and my fatigue tendency is dissipating it seems…

Oh, and this other thing I experienced: while in my car, hearing aid taken out of my other ear, relying only on my CI, I turned on my car-stereo and increased the sound level including the sub-woofer which has it’s own volume control. I listened to the music for some time, receiving the deepest end of bass sounds in my non-implanted ear (which is the only sound that ear is able to perceive these days) and all the other sounds in my implanted ear. Not too bad to listen to, actually

Later that night, I got phantom music in my head. It was not very distinguish music, but sounded like it was really loud from my neighbors apartment. (I checked by touching the wall, no such sounds from my neighbor, who never plays that loud ever anyway). And the music was pretty constant. It was like Scandinavian dance music, and I enjoyed the tunes. But knowing it was from my head was weird… It was physically impossible to hear it through my CI-ear, since I took that CI off, and the music kept playing. I link the car-session with a lot of natural bass to this phantom-music event. I guess there’s a lot going on in my brain these days

Log no. 9 – day 37 – Progress, progress and future bureaucracy

When going uphill you eventually get to the top!

Recent CI-moments:

* Had a family dinner with only the CI the whole time for the first time ever. First time I didn’t feel totally wiped out after a family congress I could follow the conversation somewhat by also utilizing lip-reading (which I’m very used to)

* Had my first lesson at audio pedagogue (learning to understand speech better), and I could hear almost all the historical dates that she spoke (it was a simple test). I have troubles with distinguishing between certain vowels and between certain consonants. But a pleasurable first lesson with a very encouraging result. But still, a lot of work to do, and plenty of potential.

* Music is developing nicely. I practice every day for several hours. Highlight was “Smoking in boys room” by Mötley Crüe, where I keep being able to separate new instruments. I took a weeks break from Mötley Crüe, and could really tell difference from last time! This time I could single out some guitar riffs. That was a nice feeling, and left me with a big grin on my face I’d say my music interpretation is now up to somewhere around 30 %

  * Coolest and most unexpected CI-moment in recent days is dedicated to Spotify   I just needed to find various types of music fast, in order to train my CI-hearing. I thought Spotify would be ideal for that purpose, and indeed it is. But, pleasant discovery; the commercial breaks in between features various voices, both male and female, and I have started to be able to understand some of the messages! Every time the commercial break is due, I sharpen my ears and try to decode the message. It’s a little competition with myself

* My son had the greatest remark today; “Dad, it’s so nice when you can hear me better!” We were in the hall outside his classroom, I was there to pick him up. A lot of other kids and everybody all talking and making a lot of noise. Amidst all this, for the first time EVER, I was able to have a conversation with my son   ) We continued the talking in the car, which is going better and better every time It’s hard for me to rely only on the sound, but I have a feeling that it isn’t that far away

* I have engaged in an audio book; “The Pillars of the Earth” by Ken Follett, in English. I had read a few pages before I put on the audio book, and tried from the beginning at first. That went really well. I then wanted to fast forward to where I was, and tried the next audio-file. I had to listen for cues, and I FOUND the corresponding text! Not only did I do it just one time, but THREE times! I’d say I hear about 20% of the words now… Give or take, depending on type of voice and other ambient sounds present at the same time.

* I decided yesterday that I am going for CI number two. YES, I want stereo too! Just like everybody else! So, have already started the process by setting up an appointment with my physician. I expect to be denied in the first round or two, but I won’t rest until I have reached my goal. I have many means of dealing with this situation, and last word has not been said, far from it!

* I’m having tinnitus issues, on both sides. My CI-side comes and goes, and I guess it has to do with “repairing” the neural network in my brain. My HA-ear has the same old tinnitus, only now it is coming more to the forefront, since my CI-ear is working better and is occupied in dealing with real electronic impulses rather than imaginary ones I’m worried how it will develop in the time to come, since I will rely less and less on the analogue ear, and turn my hearing aid off, more and more…  Time will tell. I’m thinking about seeking professional help concerning the tinnitus…

* I discovered that I had huge problems talking with someone who sat on my hearing aid-side, away from my CI, while my CI-side was easier to hear on… This was a clear head-shadow experience!

CI-activation log no. 8 – day 25 – Unbalance

The ever constant dueling between my two brain halves… See the summary at the very end of this post too

Hearing aid hearing	CI-hearing
The sound waves produced by my hearing aid triggers the few remaining hair-cells in my left cochlea, forming sound sensations in my right brain half	I got CI-electronic impulses entering my right cochlea, thus forming the sensation of sounds in my left brain half
My hearing aid provides me with ,as yet, my “normal” sound world. The hearing aid sounds are very familiar to me, even though I know that the last innermost part (estimated less than 20%) of the hair-cells in my left cochlea does the job that’s supposed to be done by the dead 80% that has no functioning hair-cells. This is called “recruitment” (follow the link for explanation).	The CI-sounds are very high pitched, unfamiliar and as yet rather unintelligible, since the electrodes covers the part of my cochlea where the hair-cells has been all inactive for a decade or three.
I do not sense high pitched sounds like “S”, “SHH”, “T”, “K”, “P” and so on (aka fricative sounds (voiced sounds are easier, but also very difficult to distinguish; “D”, “B” or “G”)). Neither can I hear alarms from smoke-detectors wristwatches, or home invasion alarms. Most mobile phone ringing tunes and pings and beeps from various electronic devices (alarm clocks, microwaves, stoves, are also out of reach. This is due to the physical limitation of my cochlea. The innermost part simply isn’t able to pick up the vibrations that have higher frequencies. (which was supposed to be picked up by the outermost part of the cochlear if it was still functioning)	I can perceive almost all sounds now, from bird twitter to ground shaking bass, but they have very little difference. All sounds have a high pitch-quality so far. This is going to improve in the coming time. And there are so many sounds I still have to learn what is. I get them all into my cochlea, but do not understand them, or rather; my brain isn’t able to interpret them for me automatically yet.
The speech frequencies (the middle part of the cochlea) is pretty much outside the still functioning part of of my cochlea, and I’m relying greatly on various forms of supplements in order to understand speech. Those supplementary strategies and techniques (subprograms) involve lip-reading, body posture interpretation, preparation (gathering intelligence prior to, or after a conversation), greater skills in observance, more used to put myself into other peoples ways of thinking (even almost telepathic, sometimes!), knowing the context and subject of talk, and then there’s the good old fashioned “doing the guessing”.	I have to “depress” my “subprograms” in order to learn to use my brains’ capability to break down audio information. This is a frustrating experience, since it is counter to all the learned and honed skills of my subprograms. I’m sure I will learn to become good at that, given time. But now it’s plain painful. Imagine the hearing sense has a representation in normal peoples brain processing at about 35%. Mine is probably down to 15% or maybe even 10%. In other words, I have a “learnt” disadvantage in my auditive sense that I have to train on, and compensate, in order to comprehend the massive amounts of information being fed into my cochlea electronically these days.
Music is almost impossible to listen to. The harmonies and cooperation between instruments and and voices are gone. It just sounds flat and dull. Boring, lifeless and soulless.	Musical harmonies has already begun to come through. I can sense three or more voices working together in a backing choir in a rock song! I can also hear the vibrato that the lead singer puts into certain parts of a song… I’m almost certain I have never been able to hear that before…
Noise is… well, just forget about it! I can’t even be in a car without having to turn off my hearing aid. It’s just terrible. Distorted and garbled sounds. To the point of torture. On top of the fact that the noise toleration is zero, it is also perceiving more sound environments as toxic. So much, that in cooperation with my “old” right ear, I have programmed myself to avoid things I need to face now with my right-side CI ear. This issue is worth a whole separate blog post later!	Noise is next to impossible… But! Voices have a tendency to break through better, using my “higher pitch” program (especially out in a street, where the background noise is quite different from voices. Haven’t tried it in a party situation yet). I have expectations to improve in this field using just one CI, but dream of what it could be with two CI’s and proper localization possibilities (and 3D “lock on target” which is possible with two similar ears, aka stereo). Anyway, hope to exceed any pre-CI era level of my performance in noise even with only one CI.
My left ear used to be my submissive ear, but is now definitively the dominant one. I have great difficulty in perceiving speech if the CI on my right ear is turned on too loud. Frankly it kills any information coming from my left ear, which is where I get the most useful information so far. I’m still 50% audio and 50% lip reading (give or take 10%) when understanding speech.	My right ear is now at a level where I can begin to use it for speech purpose. But in order to use my CI-ear, I have to turn off my hearing aid. So at this time I am probably 80% lip reading and 20% hearing for speech purposes. Look forward to this ear becoming more than 50% hearing for speech purposes.
The left ear is the ear I want to become less dominant now. I want my dominant right ear back in business. I’m turning the sound level on my hearing aid way down most of the time… I have a feeling it’s overachieving somehow. It’s as if even the sound quality is already inferior to my right ear, my brain prefers the well know sound world with mostly bass and deep sounds available. After all, you don’t deprogram an almost 40 year old brain in less then 3 weeks, right?	I’m training my right bionic ear both individually and in cooperation with the left hearing aid ear. The individual training is the most fun, because I sense so much progress and have high hopes concerning it’s potential. The cooperation-training is exhausting and frustrating. The sounds are so different, and my brain isn’t even close to be able to use sound information from both ears at the same time. At least not as far as speech is concerned. Music, maybe, for a short time, but not speech.
A lot of bass, it sounds “true”, but misses a lot of information.	Very high pitch, sounds “glassy”, but gets most information.
I don’t want to loose this ear, after all there’s some information left, and I need all audio input I can get. But give me CI, and I won’t even think twice about it. I need and want duality and balance restored! That can only happen with this damaged ear being re-fitted with electrodes!	Finally, after 4 years of waiting, something new happened. I got my CI. It’s still scary and difficult, but I have confidence in the process and myself, that I am able to transform difficulties and challenges into victories…

It is unbelievably complicated to have both ears running at the same time when they are as different as they are now… 
Imagine having one eye with the world as it is, while the other eye have to see everything upside down! One normal and one upside down, at the same time! Then try to pour yourself a glass of milk, or let alone, drink it!

It’s as if a very fast, tall, and slim lightweight boxer is fighting against a very strong, sturdy and slow heavyweight boxer. They are so different, but both lethal in their own way. I have to endure this uneven fight between my two brain halves all the time, when having conversations with people and need to find balance soon. It is a very exhausting experience…

Hearing Loss Demonstrator

I wish I came across this many years ago…

HearLoss is an interactive Windows PC program for demonstrating to normally hearing people the effects of hearing loss. With HearLoss you can replay speech, music and noise under a variety of loudness, filtering and masking conditions typical of hearing impairments. Best of all you can interactively change the settings and demonstrate their consequences.

Description

The HearLoss program plays back pre-recorded audio samples of some speech, some music and some typical background noise, either singly or in combination. As it replays, three sliders control a simulation of the effects of three common consequences of hearing loss: loss in amplitude sensitivity, reduction in frequency range, and loss in spectral detail. Changes in the amplitude sensitivity slider changes the loudness of the sound, changes to the frequency range slider changes the upper frequency limit of the sound, while changes to the spectral detail slider changes the amount of fine structure present in the spectrum.

http://www.phon.ucl.ac.uk/resource/hearloss/

Suggestions for Use

This is one way you might use the program to demonstrate the effects of hearing loss to normally-hearing people:

1. Start the music playing and adjust levels so that the audience can hear it clearly. Stop the music.
2. Explain that deafness is not just all or nothing, but that hearing impairments come in various degrees.
3. Play music and demonstrate loss in amplitude sensitivity to mild, moderate and severe losses.
4. Repeat for speech. Point out that difficulty in hearing speech affects our social interactions – we can’t follow what is going on in a group conversation, for example.
5. Explain that if hearing loss was just a loss in sensitivity, then we could restore peoples’ hearing with just an amplifier.
6. Explain that most hearing loss is not just a drop in quantity but also a dop in the quality of sound perceived. In particular the kind of hearing impairment asoociated with old age has associated changes in frequency range and spectral detail.
7. Play music and demonstrate what a reduction in frequency range means: at mild, moderate and severe levels.
8. Repeat for speech. Point out that even if the speech were loud enough, the loss of high frequencies makes it harder to understand.
9. Play music and demonstrate the consequences of a loss in spectral detail. The effect of this slider is like looking at an out-of-focus photograph – you can’t see all the fine detail. Get the audience to listen as you bring the slider back to normal – you should hear the signal getting "clearer".
10. Play speech and noise simultaneously with sliders set to normal. Point out that the speech is still fairly easy to understand.
11. Add a moderate loss of frequency range and spectral detail. The speech is pretty unintelligible now, although it becomes a bit clearer when the noise is turned off. Hearing impaired people find listening in conditions of noise far more difficult than normally hearing people.

Copyright

HearLoss is not public domain software, its intellectual property is owned by Mark Huckvale, University College London. However HearLoss may be used and copied without charge as long as the program remains unmodified and continues to carry this copyright notice. Please contact the author for other licensing arrangements. HearLoss carries no warranty of any kind, you use it at your own risk.

CI-activation log no. 7 – day 12 – first re-mapping and feeling of first real breakthrough

Wow, has it really only been 12 days since I walked out from the hospital fitted with a new bionic ear? It feels like a much longer time ago, and so much has happened! Both in my inner self and with the CI-hearing!

I hear trickling and splashing water from fountains very good, and I have noticed a significant “sound shadow” if I turn the non-CI-ear towards the sound source. In that “Sound-shadow” the sound disappears almost completely.

Yesterday I heard a bird twitter for the first time! (I probably have a recollection of that sound from early childhood, because I had strong suspicions what that super clearly defined sound was it couldn’t be anything else!) I asked my girlfriend, and the next time the twitter came, I gave her a signal, and she nodded with a big smile It was birds twitter from outside all right! That was a wonderful CI-moment! Now I look even more forward to go to Sweden again next week and just discover more of mother nature’s sounds! (and listen to my old 80’s-vinyl!!! My son is going to be SOOO annoyed by his fathers thirst for his old music!)

But, HEY! I’m getting ahead of myself here! Before that beautiful CI-moment, I was so lucky to be able to get a quick new mapping-session at the hospital. Kudos to the CI-team for being so flexible and giving me a new session with only 4 days’ notice! (usual takes 14 days) This time I got a sound-fitting from a new guy (my regular was sick), and he tested my threshold for each of the 16-electrodes (I think it was). I came to that session with two clear goals: increase sound level overall, and to get a better feeling of that much missed bass.

The missing bass has been really noticeable when I listen to my favorite Mötley Crüe songs: “Shout at the Devil”, “Girls, Girls, Girls”, “Kickstart my heart”, “Same Ol’ Situation” and “Smoking in boys room” (I’m THIS close to be able to grasp the harmonica-part in the “Smoking in boys room”!). I retrieved my car’s subwoofer from almost three years of storage, and has been experimenting with the sound settings both on the car’s stereo and on my CI and in combo with my hearing aid. Hearing aid is not used for music, the recruitment-problem is just too much; sure, the bass is wonderful on that ear, but everything else is just muffled, distorted and just… LOST 

The subwoofer taught me a valuable lesson: I can “hear” the bass through my body. My hearing aid-ear (with the hearing aid turned off, and earpiece blocking the natural airway into the ear canal and the ear drum) actually used the bass-vibrations I got from the subwoofer and blend it in with the sounds I got from the CI. I suspect my whole body “hears” those thumps and “phat” beats. It’s also the issue of bone transferred vibrations to take into considerations   If the sound pressure is big enough (i.e. enough dB), I guess the vibrations get strong enough to be transferred into the cochlea by other means than through the ear-canal…

Also I have been playing with the iConnect, and that contributed to my understanding of the phenomenon regarding the sensations in the bass-frequencies. The bass was totally missing when listening to the same songs from my mobile (Nokia N82 with jack-plug, very useful   ). When the sound input to my brain are 100% digital, it’s brutally truthful too… No other aids like air vibrations, or sound residue from the remaining deaf ear. Or unconscious lip-reading, with built-in context guessing plus sentence construction for that matter.

The songs I listed above, are so well known to me, after listening to them a million times in my youth and throughout the years. They still give me a kick, even if only hearing 20% of it (or are just beginning to) I have found them extremely useful for training and identifying which sounds I get and which sounds I don’t get. Vocals have improved, and high pitch has improved. The missing part was the bass…

I threw the 16-electrodes-program out. Bye, bye. It doesn’t sound good at all, already, so I have absolutely no need for it, except maybe for later when I want to assess my 16-electrode hearing again… But that’s not for another 6 months or maybe even a year. (if ever)

Program 1 is my primary program, and this time we raised the bass and the mid-level frequencies as a result of the single-electrodes-test. The high pitch (is this the right phrase?) was left as is, since I get those sounds really well. After that we raised the overall levels quite a bit, I imagine (will get the documentation later).

Program 2 now has increased bass-levels. I have strong suspicion I will use that a lot with my mp3-playing mobile phone…

Program 3 has increased levels for high pitch sounds. This will be used for training purposes (increase my ability to take in as much high pitch sounds as possible, since this part is what really makes my head tired, and it’s the sounds I have lost in the last 10 years.)

OK, that was the re-mapping session. Now for the real results:

Music is beginning to sound real again! I could detect (through the iConnect), some of Tommy Lee’s beats now. I still miss Nikki Sixx’ bass, clearly defined, but hey, it’s only been 12 days! I’m not complaining, but I know where I want to go and what I want to get. Even Mick Mars’ guitar is starting to emerge from the sound wall!
Best part of all; I’m getting a feel of harmonies in the music again! Sounds and instruments working together where the end result is far greater than the actual sum of the combined instruments…

I am now able to understand, with the aid of lip-reading, sentences spoken by my girlfriend! Haven’t tried it really hard today, been too much else going on, some work that needed getting done, cranky kid in the house, listening to birds twitter and all

In all fairness to Mötley Crüe; it is a coincidence that I happened to have their music on both my mobile phone and on mp3 in my car. It’s simple, energetic music and with Vince Neil’s rather boyish voice that breaks through the sound wall from the instruments is perfect for me to train my bionic hearing on. Will keep working with Mötley Crüe for listening training until I get sick of the songs. They have been, and will always be a big part of my musical life.

Aaahhh, I look so much forward to revisit music again! It’s certainly coming alive! Right now it feels like my brains’ got some rusty, creaking parts that only needs greasing! Good thing I like mayonnaise, diary butter and the fat greasy parts off the chicken, fish, pork/lamb chops or steak:-)

I’m definitely on the right track! And perhaps now I can concentrate more on training for the verbal understanding to increase.

This is the point where I for sure can say that my decision to go for CI was a good one! All the pain, all the obstacles, all the waiting, all the crying, all the frustration, all the anger, all the angst, all the hardships has been worth it. I did the right thing!

Today was a good day

Video that says a lot about my situation too

This video says a lot! I find my own situation identical to these guys’. Everything they say, even at the activation is something I certainly can identify with!

The shhh sound is amazing

Amazing video! Made by Rebecca Haimowitz.

Enjoy!

CI-activation log no. 6 – day 8 – new test and weird sensations

Time for my first self-assessment test one week after the initial activation and only 5 days after completing the primary adjustments. The change is remarkable when I think about it…
No sounds made sense that first day, and they made just as little sense on day 4, but then the brain kicked into gear and started sorting out the sounds. A very interesting journey has begun, and I’m noticing daily changes. More on that later.

I have noticed some strange sensations when I turn off my CI. It’s like ghost-sounds, and they are a mixture of different sounds. The most noticeable one sounds like howling wind, but very steady in strength and tone. The other ghost-sound is more subtle but more disturbing, since it varies. Remember the old radios with Medium Wave frequency band? It was possible to pick up signals from boats or whatever from quite far away (I’m not a radio-expert    ). And while turning the frequency tuner you would get this sound like it was jumping over a lot of frequencies really fast, picking up all sorts of chatter, Morse code and static noise. This second ghost noise sounds exactly like that! With that sound in my head I feel very electronic!

It’s so clear to me that I really wonder whether I’ve become a human antenna or not! Does anybody know what frequency the HIRes90K-implant operate on, and how weak signals it is capable of picking up? Could it possibly be that I hear radio-signals, or is it just my brain’s synapses that are creating new information highways and I’m picking up on the sounds from the road work?

Today I ran the test with the same settings on all equipment as on the previous test. The self test conducted on 09.09.09 has the exact same programming on my AB-processor as on today’s test.

What do I read from the test? Well, what really stands out is that the very low frequencies from 30 to 125 Hz have dropped. Also the mid-range frequency has dropped a little.

What does that mean? Well, I don’t need so much of the lowest frequencies, and also we found out during my initial sound-adjustment that these frequencies were interfering with other frequencies because they became distorted. And the distorted sounds were nauseating and louder than everything else…

That these frequencies are being ignored or less easily detected is a good thing, my brain is adjusting. And as for the medium frequency range between 375 and 1 KHz, that is where most of the human voice is, and what I need the most; those being reduced is also a good thing, because at a later mapping (or frequency adjustment) we can enhance just those frequencies.

During the initial CI-mapping my audio physicist recommended that I reduce both the bass and the high pitch, in order to enable my brain to be able to focus harder on the medium-range. (hope I remember everything correctly here!) +3 is a very small difference, it is the smallest possible difference in the sound-test that i use. 

I have two mysteries: the 125 Hz and the 2 kHz frequencies.

Date of test: 16.09.2009

(The minus indicates a weaker sound, meaning that the bigger the minus, the better my ability to hear that frequency is. The difference is indicated likewise, where the numbers in red plus is me needing a stronger sound in order to detect it. Essentially: the more minus the better result, and plus is worse.)

Program 1. (weaker low pitch, weaker high pitch, 120)

Freq.	30 Hz	45 Hz	60 Hz	90Hz	125 Hz	187 Hz	250 Hz	375 Hz	500 Hz	750 Hz	1 kHz	1,5kHz	2 kHz	3 kHz	4 kHz	6 kHz	8 kHz	12kHz	16kHz
16.09.09	-27	-33	-30	-27	-6	-60	-75	-78	-81	-87	-84	-78	-84	-87	-84	-78	-72	-27	-30
Change	+3	+6	+9	+9	+18	0	-6	+3	+6	+3	+3	0	-12	0	0	0	0	0	0
09.09.09	-30	-39	-39	-36	-24	-60	-69	-81	-87	-90	-87	-78	-72	-87	-84	-78	-72	-27	-30

Program 2. (Same as program 1, 16 electrodes)

Freq.	30 Hz	45 Hz	60 Hz	90Hz	125 Hz	187 Hz	250 Hz	375 Hz	500 Hz	750 Hz	1 kHz	1,5kHz	2 kHz	3 kHz	4 kHz	6 kHz	8 kHz	12kHz	16kHz
16.09.09	0	0	0	-6	-6	-54	-69	-72	-87	-87	-84	-81	-75	-75	-78	-66	-69	-27	-27
Change *	0	0	0	0	0	+3	0	-3	+12	+12	+12	+21	+15	+15	+15	+15	+15	0	0
08.09.09	0	0	0	-6	-6	-51	-69	-75	-75	-75	-72	-60	-60	-60	-63	-51	-54	-27	-27

Program 3. (Flat profile, 120)

Freq.	30 Hz	45 Hz	60 Hz	90Hz	125 Hz	187 Hz	250 Hz	375 Hz	500 Hz	750 Hz	1 kHz	1,5kHz	2 kHz	3 kHz	4 kHz	6 kHz	8 kHz	12kHz	16kHz
16.09.09	0	0	0	0	-6	-51	-63	-75	-84	-87	-81	-78	-69	-87	-81	-72	-60	-27	-27
Dif. pr. 1	+27	+33	+30	+27	0	+9	+12	+3	+3	0	+3	0	+15	0	+3	+6	+12	0	+3

* One have to take into consideration the adjustments that has been made to the programming of my AB CI. Details on that will be posted in a summary if need be at a later time. Primarily the adjustments has been mostly on increasing the amount of power sent to the electrodes, i.e. turning the sound volume up.

CI-activation log no. 5 – first week – Impressions and thoughts

I should be resting, but have so much to share, I need to unload a little

First of all, thanks to everyone who leaves comments and messages! The comments are all read and appreciated! It’s just that it takes a little effort to answer then, and right now I’m in survival mode… Nothing but the most essential gets my time these days. I will get back to your comments with intelligent responses when my brain has become a little more accustomed to the new world of sounds

One comment made me think; it’s impossible for someone who hasn’t experienced it themselves to understand exactly what this process of learning to hear again through the CI does to me…

I want to try and explain this to all those of you who has normal hearing:

You might have heard about the use of sound in military/international intelligence agencies’ torture-techniques in order to “soften” human beings before interrogations or in situations where someone has occupied a building etc. The sound is in those instances used to reach certain goals: to demotivate, confuse/disorient and cause fatigue via sleep deprivation, in order to reach some psychological effects like depression and anger (in order to make the “subject” loose control of him or herself). Like many things military, the euphemism they use to describe musical torture is “acoustic bombardment”.

Acoustic bombardment has reportedly been used in such a way that the detainee has been chained to the floor of a container and the music /sounds has been turned on. Imagine the acoustic and the psychological effects of said situation on that detainee…

OK, now try to imagine having to live with sounds that are just as loud, and just as strange as Metallica is to someone who has never heard Metallica before. You are the only one who can hear these sounds, and there is no way for others around you to “listen in on it”. There was no way out of that container for me, until I got the CI surgery. And the process I’m in now is in some ways even worse than the hearing I had before the surgery. Now everybody’s voice is unintelligible and everything I hear is just as hard to understand. Imagine that the sounds you hear today all of a sudden has been kind of inverted like a photographic negative! Everything that sounded like normal speech, deep tones and dark voices is now garbled; thin, light and squeaks, really high pitch.

It’s like getting slapped really hard in my face every time I hear a voice. Especially if the volume is a little loud, I cringe inside. It’s downright unpleasant and painful, on the verge of making me nauseous and feeling like I’m going to faint…

The container doesn’t only play loud, it plays so loud that it distorts the signals to my brain. I can hear every little sound, like the wall clock ticking 3 – 4 meters away from me, the water dripping, my own breath and so on. At the same time I hear sounds that my brain don’t understand yet, like this metal-cutting saw-blade, sounds like wind howling around a corner of a house in a storm, crackling of a bad radio.

In other words:

cacophony

–noun, plural -nies.

1. harsh discordance of sound; dissonance: a cacophony of hoots, cackles, and wails.
2. a discordant and meaningless mixture of sounds: the cacophony produced by city traffic at midday.
3. Music. frequent use of discords of a harshness and relationship difficult to understand.

If you can imagine this, (it’s literally impossible, but I hope you get an idea!) and then try to imagine that you’re supposed to be “normal” around other people. Smile and be happy!!
Respond rationally to all rational and irrational emotions to people around you…

I think that what I’m going through is the hardest thing I ever did, and I’m full of awe for the people who has done this before me and I do not find it strange that it is overwhelming for many individuals who reportedly “give” up and resign (i.e. stop training and trying to make more use of the sounds provided by the implant). If you don’t have a lot of knowledge, motivation and/or energy, I can very well imagine that the road back to the world of the hearing is too rough and long!
(In the aspect, I’d like to point out that it is essential that CI-operated and newly activated individuals get a thorough package of follow up by professionals in order to learn to hear and understand speech again!)

Psychologically this is a challenge, of course, but I know this will improve over time, so I just have to make do with what I have right here and now! And I know that people close to me also have a harder time being around me, and for that; I wish to say thank you for your patience and good will towards me! (I might need even more of it (patience and goodwill), and for that too; thank you from the bottom of my heart!)

CI-activation log no. 4 – day 5 – Initial shakedown

Wow, what a week! I’m very tired now, but need to put some impressions onto writing…

Have already had many CI-moments, here are the ones I remember now:

• the dogs at my mom; when they walk on the hardwood floor they give off a ticking sound for every step. I can detect them moving with sound only!
• I can detect the chorus in rock songs that I know well; like “Girls, girls, girls” by Mötley Crüe (I also hear the motorcycle revving in the beginning!)
• I detect my son singing in the car while the window is open
• Jingling of my key-chain
• I hear mobile phones ringing in TV-shows (never heard that before, ever!)
• I could detect my sons heavy breathing in the car (he had just been running, racing me to see how far he can get from the garage before I catch up with him, I have to wait for the gate to open first)
• I detect the difference between –s and –sh

All sounds are very thin, high pitchy. That is due to the fact that my hearing residue before the operation all were located in the innermost curves of my cochlea. (from 1500 Hz to 200 Hz in the diagram on the left) That’s where the bass is. The entire frequency range that my hearing aids could amplify, and the vibrations the hair cells were able to pick up, were dealt with by the hair cells in that that innermost curve. (Because of the limited number of remaining hair cells in the outermost areas, I experienced recruitment.)
Now, all those frequencies go to the previously almost dead outer areas of my cochlea (20 000 Hz to 1500 Hz). Which used to be the medium and high pitch range of sound vibrations were picked up by hair cells. Because of this radical relocation of sound information in my cochlea, my brain has to rewire all the frequencies through neurons forming new permanent pathways to the old brain-recipients cells who did the actual “hearing”. Until that rewiring has completed, it will continue to sound high pitched and heliumish.

I wonder if the brain would be able to do the job by itself without the aid of any other senses? Now I’m telling my brain what sounds should go in there when I drive the car, or listen to that rock music, or hear my sons voice. Because I SEE the sounds. But what if I did not see anything, just had to figure out the sounds? I’m thinking my brain probably works both ways, some sounds it’s rewiring by itself, some are helped by my thoughts… Anyone with insight into how this process might work?

As I stated in the beginning, I’m really tired! Today I had a 4 – 5 hour period where I did nothing active… (very unusual for me) Last night my son snuck into my bed behind my back without me noticing it before it was too late (he had fallen asleep). That’s never happened before. Usually I have a very sharp sense of sight, detecting any movement very fast.

All kids are really great about my CI. They fancy the magnet and think it’s way cool

The first 3 days of my CI-life, I suspect I was high on adrenaline. Everything seemed more crisp and sharp. Now I’m almost like I was before I got activated. Dead tired, numb in my bran (just not as “muddy”) and with some psychological reactions, especially very sensitive to any stress, which gives me this tremendous tinnitus again, only now it’s in both ears, and it’s has changed quality in my implanted ear… more low frequency than before, or it’s just my brain who has already started rewiring? Where does the tinnitus come from? Auditory hair cells in cochlea who are trapped in an eternal death scream, or is it from my brain which screams for those frequencies, and when it gets nothing it creates it by it’s own?

I have been avoiding the issue of tinnitus, partly because it’s has been my strategy, to ignore it away and to death, and that has worked quite well… If the tinnitus thing continues now after the CI-implant, I will have to read up on the issue… And I’m afraid the tinnitus on my left ear will take over the job since my right ear now gets plentiful of audio information….

I listen to TV-shows and movies with both the CI and the hearing aid most of the time, sometimes I turn off my hearing aid for a while. While I drive the car I only use CI, since I get too much recruitment from the hearing aid ear. While I’m walking around in shops, ore doing daily chores, I use only CI.

I need the hearing aid to communicate to everybody.

CI-activation log no. 3 – day 3 – 2nd auditory self assessment

Date of test: 09.09.2009 (1,5 and 6 kHz is the frequencies of my tinnitus, hard to hear the test-tone)

I’m only using wire connection now, in order to get the exact same test environments every time.

Since yesterday I have discovered new sounds: the wall clock (electronic with analog display), the phone ringing, keys jingling and the sound of the metal “mats” that are in front of doors in order to get rid of dirt underneath peoples shoes upon entering a building… The sound of women’s high heels are now so recognizable, I don’t even have to turn around to see what it is. I just steer to the wall and slow down to see if I was right  

Bear in mind, that the sounds I’m talking about here isn’t the sounds I’m used to hearing, it’s totally different, but I have started to recognize the sound signatures. Progress!

Yesterday I talked to an audio pedagogue at the hospital, and she suggested several training methods. Will get back to them as I get to them myself. She also recommended something called AudioTrain developed by a Geoff Plant. It’s downloadable, and is supposed to be very good. It’s translated to several languages, among other in Norwegian, which I have found here (scroll down, almost at the bottom).

Today I’m thinking and acknowledging for myself that this CI-process is really going to take time. My faint hopes for something miraculous has been forgotten. Now it’s hard  work ahead of me. I don’t mind that   Probably up to one year or perhaps even more. It’s an ambivalent thing; I notice progress, and I am thrilled, at the same time I’m impatient and can’t wait for that day that I can use the implant for conversations, even if it sounds strange…

One more thing: Before the implant, I was really tired from processing sounds all day. Now, with the implant, I’m also tired from trying to process sounds all day (I’m “cheating” a great deal by using lip reading and also my other hearing aid), but my brain feels different tired somehow. It’s as if my brain was muddy before the activation, and now it feels clearer or sharper…

I also feel I owe my readers a small apology; sorry for not putting much effort into the visual context on my blog posts these days, but it so important for me to get everything down as I go, and I really am stretched thin in terms of both time and strength. So you only get the hard boring numbers and biggest happenings and best CI-moments

Today we only cranked up the sound, no adjustments to the frequencies. That is probably for the noon session today…

Program 1. (stronger low pitch, weaker high pitch, 120)

Freq.	30 Hz	45 Hz	60 Hz	90Hz	125 Hz	187 Hz	250 Hz	375 Hz	500 Hz	750 Hz	1 kHz	1,5kHz	2 kHz	3 kHz	4 kHz	6 kHz	8 kHz	12kHz	16kHz
09.09.09	-30	-39	-39	-36	-24	-60	-69	-81	-87	-90	-87	-78	-72	-87	-84	-78	-72	-27	-30
07.08.09	-27	-24	-30	-21	-15	-57	-66	-75	-84	-75	-78	-63	-54	-78	-72	-72	-69	-27	-27
08.09.09	-21	-30	-27	-24	-18	-60	-69	-75	-81	-75	-72	-60	-57	-78	-75	-63	-63	-27	-27

Program 2. (Flat profile, 16 electrodes)

Freq.	30 Hz	45 Hz	60 Hz	90Hz	125 Hz	187 Hz	250 Hz	375 Hz	500 Hz	750 Hz	1 kHz	1,5kHz	2 kHz	3 kHz	4 kHz	6 kHz	8 kHz	12kHz	16kHz
08.09.09	0	0	0	-6	-6	-51	-69	-75	-75	-75	-72	-60	-60	-60	-63	-51	-54	-27	-27

Program 3. (Flat profile, 120)

Freq.	30 Hz	45 Hz	60 Hz	90Hz	125 Hz	187 Hz	250 Hz	375 Hz	500 Hz	750 Hz	1 kHz	1,5kHz	2 kHz	3 kHz	4 kHz	6 kHz	8 kHz	12kHz	16kHz
dB	-6	-6	-6	-6	-12	-27	-21	-36	-39	-42	-45	-30	-27	-39	-54	-36	-42	-9	-9
Wire

CI-activation log no. 2 – day 1 and 2 – 1st auditory self assessment

These values that I test on myself are values based on this resource: http://www.phys.unsw.edu.au/jw/hearing.html
The scores are from the chart on that page.

The sound-level on my laptop HP HDX18 will be set to the value of 74 every time I do this test. My CI’s volume wheel is set to exact the middle position (turning all the way down reduces sound volume by 20% and turning up increases 50%!). Then I have the same test-settings every time. “Wire” means that I use a direct connection between the computers jack-plug-outlet and my Advanced Bionics processor. No sound pollution possible.

Every level of registration is a notion of sound. That means that I do not necessarily detect the difference in tone/frequency. Green is where I hear the sound (yet so far all the sounds sound mostly the same, i.e.. a very thin squeaking tone or beeep), red is only a short beep, blip, bip or ding.

( I can hear  violin of my own breath, broken glass of paper being crumbled and a ding every time one of my fingers hit a key on the keyboard!)

If anyone know of more sound-test or sound-generating resources on the internet, I’d be grateful for any tips!

Date of test: 07.09.2009 (1,5 and 6 kHz is the frequencies of my tinnitus, hard to hear the test-tone)

Program 1. (stronger low pitch, weaker high pitch, 120)

Freq.	30 Hz	45 Hz	60 Hz	90Hz	125 Hz	187 Hz	250 Hz	375 Hz	500 Hz	750 Hz	1 kHz	1,5kHz	2 kHz	3 kHz	4 kHz	6 kHz	8 kHz	12kHz	16kHz
No wire	-9	-6	-9	-9	-18	-30	-27	-42	-45	-51	-48	-27	-48	-48	-45	-27	-42	-6	-3
Wire	-27	-24	-30	-21	-15	-57	-66	-75	-84	-75	-78	-63	-54	-78	-72	-72	-69	-27	-27
08.09.09	-21	-30	-27	-24	-18	-60	-69	-75	-81	-75	-72	-60	-57	-78	-75	-63	-63	-27	-27

Program 2. (Flat profile, 16 electrodes)

Freq.	30 Hz	45 Hz	60 Hz	90Hz	125 Hz	187 Hz	250 Hz	375 Hz	500 Hz	750 Hz	1 kHz	1,5kHz	2 kHz	3 kHz	4 kHz	6 kHz	8 kHz	12kHz	16kHz
No wire	-6	-3	-6	-6	-18	-27	-21	-33	-42	-42	-42	-30	-36	-36	-39	-36	-42	-6	-6
Wire	0	0	0	-6	-6	-51	-69	-75	-75	-75	-72	-60	-60	-60	-63	-51	-54	-27	-27

Program 3. (Flat profile, 120)

Freq.	30 Hz	45 Hz	60 Hz	90Hz	125 Hz	187 Hz	250 Hz	375 Hz	500 Hz	750 Hz	1 kHz	1,5kHz	2 kHz	3 kHz	4 kHz	6 kHz	8 kHz	12kHz	16kHz
No wire	-6	-6	-6	-6	-12	-27	-21	-36	-39	-42	-45	-30	-27	-39	-54	-36	-42	-9	-9
Wire

CI-activation log no. 1 – day1 1st impressions

OK, finally activated!I’m only one hour into my CI-era, and I sit at a hospital canteen-table next to my good girl, Mette. Her hand is lying warm on my thigh, relaxing me.

I start off very easy, all my sound settings on the Advanced Boinics computer programme “Soundwave” are set at the bottom. It seems I’m able to pick up auditory nerve signals very good. Meaning that I’m sensitive to them. That’s a good omen in my book.

I’m very conservative in terms of setting the sound too loud, many thanks to Abbie who wrote a post about overdoing that part meaning to be offensive. It ended up with her getting an overload.

But in the 15 minutes from my audiophysicist said that now was the time for my first venture out in the audioworld with my new cyborg ear, I discovered that I had maxed out the volume already. So before we went out the door, he made a second programme with an overall higher volume. I have now had that programme on and the volume wheel has been cranked to max. Looking forward to get back to adjusting in more details at noon today (45 minutes from now   ).

Will be exciting to see if all frequencies are just as good, or if some frequencies will need more/less amplification.

Sounds I get now is just morse-code. It literally sounds like morse code. My own voice is like bip-bip-beep-bip-beep-beep.
Sounds I have received as morse code so far are voices. My own voice, Mettes voice, and the audio physicists voice, and faintly other peoples voices. Cars, trucks, trams and buses don’t give me any sound sensation through my auditory nerves. When I closed my eyes I could sense the sound of the powerful sit-on-top-drive-like-a-car lawn-mower 10 meters away through the air-vibrations hitting my body… No auditory response there.

I had my first-CI-moment: I detected the sound of my own shoes! It came through like this beep – - – beep – - – beep…..  I stomped my feet, and yes, there it was; beepp — beepp.

It’s a strange sensation, it’s almost like a submarine sonar giving off it’s ping sound: PING! ——  (and the weaker echo comes back: bip). Feel like I hear what’s NOT there instead of hearing the actual sound… I know intellectually that it’s my brain trying to make sense of the input, but I have a need to express these sensation in words, I want to remember them and share them…

I found other CI-users  explanations and variations in sound sensations very interesting. And because I read them, I have been very well prepared today. I’m not afraid, I’m just curious on how my adventure will turn out to be, and I enjoy every new discovery, such as the beep-beep of the chairs being moved here in the canteen. I had morsecode telling me that some sound was being emitted, and I looked up at the guys at the next table  and they were laughing loud.

Yes, my CI is already doing me a service. It can tell me that there are sounds out there.

The tinnitus is roaring constantly, but the morse-code is louder.

I’m tired already, every bip-beep makes me feel slightly nauseous, on the verge of making me dizzy. Think I’m doing pretty well so far. Beeps come in from all sorts of sources, and I detect the beeps and bips.

Time to give myself a little break.

Goodbye old life – Hello new life! (?)

Wow… I’m still here!

More than 4 long years after the neurons (picture on the left) in my brain formed the thought of getting a Cochlear Implant for the first time, I’m finally here. At the doorstep of a new reality. A new perception of the world of sounds promising improved social interaction and perhaps even music.

Back in 2005 my son had his first day at school, Microsoft’s Windows Vista was still to be officially launched, Pope John Paul II had just died and Pope Benedict XVI became his successor, the superjumbo Airbus A380 had it’s maiden flight from Toulouse, the Kuwaiti women were granted the right to vote (on my birthday), Lance Armstrong wins his 7th (and so far the last) Tour de France and the hurricane Katrina wreaks havoc in the US city of New Orleans and surrounding areas.

Now, in 2009, my son is in 4th grade (!), has a new set of front teeth and has grown almost 50 cm, Windows 7 is just around the corner, Barack Obama is the new US President, Lance Armstrong made a comeback to Tour de France and the world is desperately trying to shake off the effects of the worst global financial recession since 1930.

This time of waiting for CI has been hard and exhausting. I want to direct a very criticizing finger at Norwegian health authorities (forget about party-lines, this goes for all politicians and all policymakers!):

It is de-motivating, devastating and beyond understanding to have to wait 4 years for a life-improving sense enhancing procedure such as the Cochlear Implant! It is counter effective, both in terms of pure financials for the society and in human capital. Instead of returning quickly to a productive life and continuing as a healthy member of the taxpayers force, individuals such as myself are forced into years of life suspending professional and personal social life hibernation. It is such a place where the personal price is high, and the society’s costs are growing into grotesque proportions!

I have a 3 point petition:

1. Sense improving technology such as the Cochlear Implants is the future, embrace it! Build and strengthen national CI competence right now!

2. Stop being afraid it costs too much! In the end it costs much more to stall, let alone not doing it! It’s plain common sense! It is a CHEAP investment into human capital! Build for the future!

3. Grant all who might benefit from it, bilateral CI! In return I can promise you happier and much more productive deaf citizens of Norway!

I can’t say that the 4 years that has passed since my brain created the first thoughts about putting a Cochlear Implant into my head has been boring, far from it. They have been eventful!

Related to my condition; I went through 2 years of psychological therapy, countless visits at the hospital asking about when I could get the operation done (nagging), I said goodbye to my beloved music, I went through many life changing decisions, all in order to survive and maintain a life in order to be able to father my son the best I could and to remain sane, healthy and alive.

Yes, it’s been the fight of my lifetime so far! I had many small and big defeats, such as the day I admitted to myself that I was no longer fit for the A4 working life, or when I had to accept that I had to wait 4 years for that life-changing all-important cochlear implant…

But it’s a lot nicer to count my victories I remained on my feet, I did not succumb to self-pity, I have been a somewhat decent father to my beloved son, I actively worked my brain from a medium depression state into a better functioning state with a more realistic view of myself, the world around me and it’s expectations from me. I made my life better, in spite of the borderline progressive deafness and it’s challenges. I lived my life to the maximum of my capabilities. I started my own company (in order for me to be able to work as much as I could/can). I got closer to my family and I found a very promising life-partner! I did not waste my time   Sometimes challenges bring out the best in you.

At last, but not least; this blog has been my salvation, brainchild, hope and joy. I started ci4me2007 in the last weeks of 2006. I had such high hopes for it to become the year that I would finally get my CI. Now, 157 (counting this one) posts later, with 45.000 accumulated views (that means 45.000 opened pages), it’s almost nostalgic to look back. I wonder what will become of this blog now.

A new chapter in my life begins the day after tomorrow. I owe the ones that are next in line for CI, wherever they might be, to be able to access my experiences both good and bad, just as I have been able to read about Michael Chorost (read his book!), Jennifer, Abbie, Sam, Jeff, and many, many others, and more recently; Kate, Movale, CIborg.

It’s time to walk through that door of perception, and shape my new world, and my life along with it. Wish me luck!

See you on the other side!

Diving with HIRes90K?

Have had a long wait for answer about my question about diving with the HIRes90K implant. Both sources have given me the same answer, Advanced Bionics has tested the implant to only 2 ATM, equivalent to 10 m below surface (33ft). With “no plans to change the recommendations”.

I find this very dissappointing, since I’m into diving, have had the PADI Open Water divers certificate for more than a decade. Whenever I travel to exotic locations, I do my outmost to dive there locally.

Previous experiences has been:

The island of Roatan in Honduras (PADI-certification, great corals and animal-life)

The Red Sea just outside Hurghada in  Egypt (went to a partly polluted dive-site, a bit destroyed corals and garbage, but first dive with underwater camera and decent animal life)

The famous Aliwal Shoal in the Indian Ocean – South Africa (my first encounter with ragged tooth shark, and swimming with sea turtles! Very difficult conditions, very technical dive.)

I was hoping to continue this fine way of experiencing a very different and wonderful world in different parts of our great blue planet…

Does anyone has any insight into this? Can we ask Advanced Bionics to do further tests in order to perhaps tell us it’s safe to use in even greater depths? (Like 18 meter which is the limit of PADI Open Water diving…)

Any experiences with diving with cochlear implants? Please leave a comment if you did, or know someone who has been diving with an implant…

Tinnitus maximus terrorismus

Have to address this issue of tinnitus again. Hope you don’t get bored of it… (I am bored of it myself… sigh…)

I’ve had my share of tinnitus before the operation, to the extent of it becoming a psychological burden and problem. Sleep deprivation, energy-draining, thought- and concentration-disturbing etc. etc.

Post-surgery I’ve had attacks of tinnitus on my operated right ear. These attacks have been unbelievably disturbing and loud. The first time I had an episode, I was downright scared! It was in the middle of the night, at around 2 am. Darkness all around me. I was lying still, still aching from the surgery wound behind my ear. I was horrified by this new experience. My heartbeat raced and adrenalin-levels rose… The tinnitus turned on very quickly, and felt like if somebody thrust a screwdriver right into my ear (except for the obvious pain that I would have felt if that was the case). It literally screamed sound, no, it was even louder, it was so loud it was on the verge of being painful! And that is LOUD!

In a panic strickened state, I felt desperation coming closer and closer. I turned on music from my mobile-phone, via the Phonak Smartlink FM-system, the loudest I could get on my other ear, thinking I should give my brain something else to chew on, sound wise. And it was as if the tinnitus in my right ear was so loud that it deafened the music in my other ear! I couldn’t even hear the music! I only listen to songs I have listened to for decades, I know them inside out, and still I couldn’t even follow the beats! I kept the music on for some time, and after a while I grasped the music, knowing in which part of the song I was, and when the chorus came and so on. I kept listening for quite a few songs, trying to force the tinnitus terror to subside. But it didn’t…

Very weird and scary experience!

After the first attack, which left me more or less sleepless that night, I’ve had several more attacks. I’m a little less scared, because I know the attacks will stop after a while, but it’s still as intense!

I have found one common trigger for the attacks, and that is fatigue. When I’m really tired, and have been using my hearing in the other ear, plus lipreading and utilizing all my brain’s resources in order to communicate verbally, the attack comes all of a sudden. It’s like turning on a switch!

I have been able to fall asleep, even though the attack is running in full mode. I use a trick that my girlfriend thought me; I listen to the sound, and I look for a melody in it. It’s very much like meditation when I get to that stage, and then I’m able to relax. That is the key to handling tinnitus for my part: to relax. And of course, it helps to be near dead of tiredness

This post was written a week ago, and since then the attacks are less frequent and less “violent”. That is a relief. On the other hand, I have this constant tinnitus that I have had for many years now…  The only difference from then and now is that I have no other sound to mask the tinnitus with, as I’m waiting for activation

I tried my old hearing aid on with a lot of sound, but now it’s just void (except for the beeping tinnitus, of course) in my right ear…. Nothing…

Can’t wait for it! September 7th is the big day!

Attitude, prejudice and ignorance

I have an assertion: I believe that most people with hearing disabilities are better LISTENERS than many normal hearing individuals! Our (hearing disabled) minds twists and works the different possible meanings much more than they would in a normal individual’s brain, because we have to constantly question and confirm what we think we apprehended. Thus the process to understanding is more complex and thorough…

I found this quote below (unknown origin) quite mind-provoking; it adresses something that needs to be discussed more. It’s not only about what happens in the convergence between deaf and hearing, but also in an universal aspect. It’s about everything that is different from yourself and ourselves…

"If I had to put in a nutshell what is the worst thing about being Deaf, it`s not that I am not able to hear music. It`s not that I am not able to hear a voice. It`s not that I can`t use the telephone. It`s not that I can`t enjoy a movie or a play.

What is it then? Attitude. Thats my biggest handicap. Not my attitude; your attitude…"

Hope this generates some thoughts!

My “beauty-contest” wish, in regards to this quote, is that I wish people learn better to really LISTEN, ask more QUESTIONS and develop a method of CONFIRMATION of understanding the meaning.

It’s so common to be content with just hearing what has been said. The victim of this contentness is that the MEANING and REAL MESSAGE of what has been spoken often gets twisted, lost or misunderstood… At least that’s my experience… Sometimes I wish there were classes throughout school that was all about how to communicate better!
(you know; communication is as much about DELIVERING the MEANING as it is to UNDERSTAND the meaning! There is a whole process there, just for transferring a MEANING that is so underdeveloped and underestimated!)

Thanks to Ann K for bringing the quote to my attention in the first place… (her blog is written in Norwegian)