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…

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. 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)

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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)

Sucessful surgery!

Arrived hospital at 06.45 with my girlfriend with me as company, was given a bed and a very sexy hospital shirt at 07.15 along with 3 painkillers and a valium. 15 minutes later my memory has a blank until post-op.

Surgery lasted 4 hours and went very well

Staying the night at the hospital hotel and released tomorrow after checking the wound and changing the dressing on the wound.

My tastebuds and facial expressions are intact. A little dizzy and tinnitus roaring in protest.

Had a funny experience with sound hallucinations while dozing: sound like radio noise. Never heard before with hearing aids off.

Also had a nasty experience while equalizing pressure in my middle ear, it crackled, much like radio noise that too, but even more clear sound. And my girlfriend could hear it too! Will talk to doctor about this first thing tomorrow…

Have to thank everybody who has sent me thoughts and prayers and crossed fingers for me!!!

Second and final pre-screening session tomorrow!

I’m eagerly awaiting for tomorrow to arrive

Finally I will meet the CI-team at Rikshospitalet and find out if I’m eligible for a CI or not. I have very few doubts in that regard, but have to prepare for the worst, of course. As well as for the best

Right now my tinnitus has been roaring like a ships fog-horn for the last week (only with a slightly higher hertz frequency). It goes to the extent that I rather listen to exhausting sounds than turn off my hearing aid to rest my brain… It’s a catch22- situation. But I’m holding on to my sanity thanks to my work, family, son and my great girlfriend. She will join me tomorrow at the hospital, and for that I’m ever grateful. It will be good to have someone’s hand to hold. I expect some fierce emotional reactions no matter the outcome… Especially if the answer is yes, we’re GO!

Sorry for not writing anything lately. All my strength now go towards self preservation and building a future life with my girlfriend (did I mention that she is a fantastic girlfriend? I’m a very lucky man!   ).

I’m working a little bit for my own company, but had a recent incident that had a huge impact on one of my customers. My concentration is a constant issue that concerns me. I have to work twice as hard in double checking everything I do…

Hearing-wise, I’m probably at my life’s lowest point right now. I comfort myself with the fact that it can only get better. Either I go completely deaf, or I get CI. Either one is OK

Some days I feel great, everything is fine. Other days are like the world has been covered with steel wool. Everything is hard to grasp, hard to deal with, hard to get to. Even resting up is hard… But despite this, I’m able to keep my head up, my good spirit is never buried for long. I have much hope and a lot to live for!

I will be a better, healthier man!

I wish to dedicate this post to Michael Chorost. I recently read his book: “Rebuilt”. It gave me more insight and a lot more hope in a time when I needed it. (I bought that book two years ago, and have been saving it for a time when I was ready to read it). Thanks, Michael! (I want a sequel to that book, with your experiences with two CI’s!)

I feel like I know you a little now

Financial crisis for Australian CI-candidates

Australian government fails to fund demands for CI-devices in infants and adults.

It is outrageous. They bail out banks in the finance crisis, but can’t allocate $2.5 million for people to get a chance to hear…

Read more about it here…

Deaf for a day

I just read this journalists story about being deaf for one day. For everybody that have “normal” hearing, this could very well be en eye-opener!

The challenge for “normal” hearing people is to comprehend the situation for deaf and/or hard of hearing. If the sound is missing, that is easy to comprehend. But what if the sound is partially gone, or if it disappears slower than you can notice? And try to comprehend the sound being gone permanently! What would that do to you?

What would it do to your social life, your ability to do you present job or your ability to communicate with your loved ones?

I hope “normal” hearing people take this opportunity to stop in the tracks a little while, and just contemplate on this subject.

And then you can give me you comments

Here’s the link:

I volunteered to find out what it was like to be deaf for a day

 

Another story: Deaf for a day – part II

Advanced Bionics test program – AGC (Automatic Gain Control)

My fellow CI-blogger Jeff “Metalhead” just published very interesting information about one of Advanced Bionics programs.

It’s called AGC (Automatic Gain Control) and Jeff discusses pros and cons and explains really well what it’s about and so on.

Read his post here

What to think?

Since my last post life has grabbed hold of me This is a good thing. I’m changing my life in the direction I have always wished for. I consider myself extremely lucky

Life is looking good, but has it’s challenges and a few funny twists…

Challenge 1: how to engage in healthy social life as a post-linguistic late deafened man without blowing a few fuses?
Answer: It’s near impossible. But with an understanding and supportive girlfriend who also gives me “the speech” when I need to hear it, I’m learning my lessons and I have to take the consequences of it. And I do. Many thanks to my sweetheart for being my honest and fierce hearing assistant and for taking care of me!
The very first meet with her large great family was made into a positive experience despite really sad circumstances. “C’est la vie”, as the french say.

Challenge 2: how to handle the (what I feel is) suspicion from medical professionals that ask me if I can’t do more than I am doing at present time?
Answer: Tell myself that my feelings can be ignored (in this matter), that I’m probably mistaken, and that if my physician really wanted to understand, she could ask me more questions. No one can understand my condition without having been there themselves, or asking me about how it is (I have become quite good at explaining it). On a side note: my perfect speech has become one of my “problems”, because “you can’t speak perfect and have a hearing problem” (you should at least have a speech deficiency!). Most people almost fall off their chair when I tell them my hearing chart classifies me as a deaf (as they have shown for many years).
It’s my hearing it’s something wrong with, not my head and certainly not my mouth!

Challenge 3: How to handle large life altering changes in life?
One thing at a time. And take it slow if you can. I have no other recipe.

Twist no. 1: A girl I know applied for CI after me, who has suffered sudden deafness on one ear, is due for CI-surgery at Rikshospitalet within the next two weeks. Why is she prioritized?
Believe me when I say that I’m thrilled for her! She is a great person, and really deserves it. But what about me? Didn’t I complain enough? Am I too naive about expecting the medical professionals to understand my condition? Isn’t it enough with deafness on both ears, a recruitment problem and a devilish tinnitus? I have a child I’m taking care of too! I feel I’m being punished for coping too well through difficulties in my life… It’s not the first time this has happened to me. I keep on doing my best. It’s all I can do. And to wish others good luck with their surgeries… My turn will come. I’m lucky and blessed with what I have in my life… I shouldn’t complain… I just want things to be fair and equal. But you can’t expect life to ever be fair, I’ve learned that much. It will only disappoint you.

Twist no. 2: The government are about to release a “finance crisis” package of stimulation to the economy. How about stimulating Rikshospitalet to operate on all those 200+ adults who need CI and have to wait 2+ years? That alone would save the well fare system for vast amounts of funds! It aggravates me! This (CI) group of individuals are too small to be heard in the larger context! I’m still waiting for Association for Hard of Hearing to get going with the process about the CI-operations at Rikshospitalet that is failing to meet the demands from the Health Minister last year… But anyway my turn is due soon, and this media-thing will probably come too late to have any effect for me anyway.

Frustration no. 1:
I had to ask for an extension of my temporary well fare benefit due to the slow process of CI-surgeries at Rikshospitalet. It will probably amount to another year! Another 500 000 NOK of taxpayer money wasted, and another year for my professional career gets lost. I’m starting to think: why bother trying?

Christmas 2008 – 36 months in waiting

As the end of 2008 nears, I have this summary for the year.

Still waiting for the CI. Still have no date. Still on the brink of deafness. Still struggling in everyday communication situations.

Despite this, life is pretty good. I’m extremely grateful to live in a country like Norway, where I’m provided for. I’m not happy about the waiting part, of course. But I’m able to pay my bills and buy presents for my loved ones and even take a trip to my friend in Norwich, UK for the Christmas and New Years Eve!

Personal life is really good with a new, promising and really exciting relationship. This awesome woman might be "the one"! So I’m very, very happy about that and look forward to the next year for that reason alone. I miss her achingly bad right now, but this trip to UK was planned even before I met her, and we both have "family circumstances" that requires us to take things slow and spend this holiday apart… 

Health wise, I’ve regressed somewhat, but that is because I feel some strength returning, and have an urge for getting back up and on with my life… Neck and shoulders are troubling me. I started swimming again, but evidently the body isn’t quite there yet.

But I keep telling myself; take it easy, don’t exhaust yourself again… It’s not easy to take it easy for me, but I’ve become better at knowing when I’m tired and need a break. Still working on that issue I guess.

Had a round of pneumonia and a couple of common colds so far this winter.  That is not normal for me, but then again, "everybody" has been sick this year… That stopped my training for a few weeks. I’m looking into why the neck and shoulders are hurting as they are. Buying new pillows, trying out some dietary supplements for joints and muscles for people who are exercising… It doesn’t seem like the training itself is the cause, because the pain is still there after a few weeks of no training…

My guess it’s the stress from trying to keep up with conversations and common verbal communication. (you know; protruding my head, in order t signal that I have trouble hearing you, or signaling that I didn’t hear you. It’s just that mimic habit that is hard to stop. It affects my whole body posture… Head forward, shoulders slumping forward, upper body bent forward, looking into the ground… I arrest myself, but when I get tired, it’s back again…)

And now the flu is on it’s rise, newspapers in Norway report…  Ah, bring it on, and let’s get it over! It’s good for one thing; to keep the immune system on it’s toes and in tip top shape, isn’t it?

When I return to Norway, I will investigate in how much longer I have to wait for the CI-operation.

I have a few things going on in that regard. Will report on it here on my blog when something real happens.

It seems like 2009 will be the year I get my first CI. Can’t be more specific yet…

So, to all my readers:

HAPPY NEW YEAR!

Explaining my deafness (even though I hear sounds)

I find myself explaining again and again to people what being deaf really is. It might surprise a lot of people that I can hear, but still have to classify myself as deaf, particularly in social aspects. Here are a few official definitions before I will give you, my readers, my self-developed metaphor I have created in order to explain deafness to my friends and family.

deaf (df)

adj.

1. Partially or completely lacking in the sense of hearing.

deaf,

adj without usable hearing.

deaf,

lacking the sense of hearing or not having the full power of hearing; exhibiting deafness.

My challenge of deafness:

I can hear sounds. Bear in mind that I am assisted by hearing aids in order to hear any sounds.

But I have problems distinguishing various frequencies of sounds. It means that I can detect that someone or something emits a sound, but if someone pronounces a word  or a sentence, my challenge is to interpret the meaning of the spoken word or sentence. 

My metaphor goes like this:

If a painter fills a canvas with a series of painted stripes in various shades of color, it creates an expression (like a visual word). If you look at the same painting with eyesight that is poor, you loose the ability distinguish the various shades. Thus the painting becomes dull. If the eyesight is poor enough, the painting looks like one blotch of paint which leaves an unclear or blurred expression.

Anyone have a better metaphor? I’d like to know about it if you use another one, or come up with one…

Norwegian Deaf and HoH asks for SMS to emergency services

Recently some larger news-services (VG) in Norway has picked up on this story:

The Norwegian Association for Deaf has started a campaign in order to make the Emergency services available to deaf and hard of hearing via SMS. Like it is now, it is NOT POSSIBLE TO SEND SMS TO EMERGENCY NUMBERS IN NORWAY!

Apparently Sweden, Denmark and Iceland all have SMS to emergency services.

See informational video on www.deafnet.no

Here is a captioned (Norwegian) video from Bergen about a deaf man who could not get contact with emergency services when his boat caught fire. They mention the project in Sweden which supposedly will be permanent.

Question to my readers:

Does 911 in the US have this kind of service to deaf?
What about other countries?

I’d like to know, because I travel a bit from time to time…

 

Thanks to Ann Kristin for making me aware of this.

Status update IV – early autumn 2008 – part 4 of 5

Everyday life – restlessness

I’m more stressed and restless. The feeling of social isolation is stronger than ever, and I’m more sad. It’s not depression, because I am able to initiate things and engage in activities that are good to me. The positive experiences about my body’s reactions to physical exercises this summer came at a good time, because up here in the north, the autumn is generally a rough time because it’s get much darker so quick, and thus it’s important to be in a good physical condition in order to avoid Seasonal Affective Disorder (S.A.D) which I had to some extent during my early adult life.

Training in the swimming pool will give me a positive reaction this autumn and winter, I’m sure. Hopefully the stress will be reduced and I’ll be able to relax properly again.

The CI-operation

Lost love is one part of the rough spot that I’m living right now. The other part is that earlier this summer, I had great anticipations about getting really close to my turn at the operating table for the CI. Not so. As things have turned out, the budget cuts at Rikshospitalet that I wrote about here earlier has slowed down everything. Instead of operating according the what the Norwegian Health minister ordered (at least two operations a week), the speed slowed down to one operation a week. So current status to my operation is that I can expect something to happen next year around summertime… One whole year more than I thought my worst case scenario would be when I started this blog… It takes some time to wrap my head around this. And it takes a whole lot of effort to not go negative about this, too. I do my best.

I have patience…

“Wait in the power of knowing what is possible…. Do not waver…. Remain steady… Remain true to your goals and allow life to carry you. That which is worthwhile is sometimes created slowly.”