via Hva er målet?
I will not kill this blog, there is too much good stuff and loads of information on it. I might even write more if anything significant crosses my path. But as I have arrived at a new chapter in my life, it was time to move over to a new blog. That blog will be dedicated to my new life as a deaf who uses sign-language. I assume those of you who wants to follow me on the new blog, know how to google translate etc. If you have any questions, feel free to comment (on my new Norwegian blog) in English, no problem.
The new blog http://tegnspraak.wordpress.com
Right now I’m writing from my temporary new home: Ål Folkehøyskole. I’m in the process of learning Norwegian sign language. This stage of rehabilitation will take me through the winter up until May 2014.
Well, several reasons. Prime reason is that my wife and I found out we had to take some serious action if anything is going to change or improve with me (and along with me, the whole family). The biggest concern now is still severe fatigue (resulting in loss of cognitive skills, lack of concentration and sleep disturbances et al.) caused using the CI’s mixed with tinnitus and other immune system related issues.
My wife pays the biggest price this year, being alone with two children with a fulltime job. I can’t begin to tell you how much indebted I feel. She is just awesome!
Then it’s the being apart from each others that all of us has to endure. Luckily I have my CI’s, and can Skype-chat with my children and wife.
Since my last CI-activation, I have focused on resting and getting rid of stress in order to get my energy back. Finding a balance has been my main goal. It has been a struggle (still is), for many reasons. Having a toddler who has trouble sleeping well at night due to medical reasons is one of them.
Healthvise, the situation has improved. My physiscian and the health-system has been able to help me with several smaller health issues that in combination also took a lot of my energy before.
Overall, things has improved to the extent I can tell the difference. But unfortunately, that is still not enough for me to be able to just live my life without concerns about my ability to function the next day. It takes a lot of time after so many years being chronically ill. Years actually.
What was hard to get into the latter year was the physical exercise that I have known for a long time was overdue. Being chronically fatigued means you just can’t exercise like any other person. In fact it can make your health worse. It’l like when an athlete is overtrained, he has to stop training.
Now I finally have a set of parameters in my life that allows me to focus on that. I am, 10 days into my school-year, well underway with great results and feeling well about it too. Mostly swimming, but also focus on diet and weight. When I get results from that regime, other things will follow, among them; more energy and less impact of winter depression (hopefully). This will be an interesting process.
Yes, they combine well! CI is not only about hearing again, period. It is about hearing as well as you can. It is NOT ALWAYS the total solution. For a whole human being to maximize the profits of such technology, we have to consider the whole picture.
For me the CI presented the ability to hear quite well again after going (being?) deaf for nearly a decade (of which the last 5 years were totally unnecessary, but that is another issue). However, the CI cannot give everyone super-hearing again. For that the technology is still too crude, and the interface between man and machine is too poorly designed and developed. And let’s not forget that the brain is still the boss, no matter how good the technology is or how motivated an individual can be. If the brain has been left without sound-stimulations for too long, the brain develops in other directions, improving other areas in order to compensate. Inserting CI in a lifelong deaf person doesn’t make much sense in that aspect.
The key here is SOCIAL HEARING. The ability to apprehend speech. I have trouble maintaining a meaningful conversation if there is other people speaking nearby, or if there is ambient noise around me. I can push and strain myself and achieve a fairly good result. But it has a very steep price; fatigue.
With CI, I perceive all sounds around me, like I have never done before in my life. The sounds of an airconditioner, wind woshing in the trees, various creatures moving around, kitchen utilities running, children playing/singing/etc are all sounds that mixes with what I need; speech from someone communicating with me. That mixing of sounds gives the brain a lot of work, which in turn makes me quickly tired. Then add the tinnitus (which "fogs" incoming sounds too), the brain’s previously adapted compensating techniques of lip-reading, putting togheter pieces of comprehended words, guessing the missing parts etc etc. This all adds up to a bill that is simply too big for me (and my brain). It’s just not sustainable.
I can’t function solely on CI for a whole day, let alone the rest of my life. hat’s why I’m learning sign language now; I need yet another compansation technique! One that supports all my other communications skills.
The biggest "challenge" of sign-language for my family isn’t me learning sign-language. It is providing my family and people around me with the opportunity to learn it too! I’m fortunate to have a wife who understood this before I did (at least she was the one who saw the necessity for taking the big leap). Without her understanding, support and initiative, I would still be sitting home being tired all the time. But the support-system in this regard is just too weak and unsupportive here in Norway. We can do so much better.
Communication is all about social interaction. We as humans are social beings. Without social interaction we are unlikely to be happy and contributing. The meaning of life is to live the life among other human beings, experience emotions and so on and so on. One person getting socially isolated is a burden for us all, not just the one.
One deaf individual in a hearing community, can be a loss for the whole community. One deaf family member can be a loss for the whole family. Thats why rehabilitation of deafness also includes those around that individual.
to be continued….
Hvorfor jeg ikke fant denne artikkelen før nå er merkelig, men til tross for datoen er den fortsatt meget aktuell.
For my English readers a Google translate (quality of translation is a bit whacky, but read between the lines and you will get the essence of the article) version:
I had all three of them, and with bilateral CI I still have to “work my way trough” “loss of clarity” and “recruitment” (to some degree in various sound environments).
These sound examples were made by Arthur Boothroyd, Ph. D.
I think they might contribute, a little bit more, to the general understanding of what hearing loss is like, for normally hearing people.
The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.
Here’s an excerpt:
4,329 films were submitted to the 2012 Cannes Film Festival. This blog had 16,000 views in 2012. If each view were a film, this blog would power 4 Film Festivals
I just came across some sound-samples that simulate my own tinnitus. I wanted to share them, so perhaps people around me better understand why I am tired or unable to participate in social activities.
The only time I don’t have tinnitus, is when I am so preoccupied with something else that I “forget” it, or when I sleep.
Tinnitus get’s worse (more loud and more “present”, harder to ignore) when I have slept bad, or when I am getting more tired or sick like with a flu.
I have been thinking back, trying to get a clue as to the reason why my CI-operations didn’t “solve” or remedy the tinnitus problem, and have worked out this theory:
From around 2000 and onward, I cranked up the sound volume on my hearing aids every time I had a control or new hearing aid or simply needed adjustments. The result of this cranking up? I walked around with an aproximate loudness of 100 dB to 120 dB and more for 10 years! This might have resulted in the development of recruitment (norsk), hyperacusis (norsk), even more hearingloss (aka more rapidly deterioriating hearing) and tinnitus.
Furthermore my theory is that all these years of unusual loud sounds coming from my hearing aid, resulted in my brain (the parts receiving and processing the electric nerveimpulses of sound) underwent some structural change or that my sensorineural system developed some kind of damage. I am not a neurologist or expert in any medical field, so these are a laymans theories…
I feel that the health services in my country failed in providing adequate help to me in a reasonable time-frame. Maybe I could have been without the tinnitus, had I been helped 5 years earlier… I’m not bitter, I just want others to learn from what happend to me. And to prevent others to have to deal with the same things, if it’s avoidable…
In many ways, the process I have been in after the second operation has been about accepting that I am nowin fact deaf. Yes, I can hear with the CI, but I can’t use them (to hear) all day. In fact, two – three hours per day is my present maximum dose of sound. I have to learn to live a large part of my life as a deaf person. Also it’s not just me, but my family has to learn to have a deaf person around them too.
My wife has identified the need for us all to learn sign-language. I have been too stubborn to realize it or initiate it. At the same time I have always been open to it, thinking that refuting something that might actually help, just because I don’t want to be deaf, is a counterproductive thing to do. So I am open to it, and we actually went to our first week of school, for the whole family, to learn sign language just a few weeks ago.
It was an eyeopening experience, and we will learn to sign in our family.
Nasjonalt senter for hørsel og psykisk helse arrangerer mestringskurs for deg med nedsatt hørsel. Oppstart januar 2013.
Nedsatt hørsel innebærer for mange en kontinuerlig kompenseringsinnsats. Du må kompensere mentalt for den informasjonen du mister, du kompenserer for muskulære anstrengelser i nakke og skulder, for nedsatt balanse, du bruker energi på å lokalisere hvor lyder kommer fra osv. Stress og følelse av utmattelse forekommer ofte i kjølvannet av nedsatt hørsel.
I forbindelse med doktorgradsprosjektet “Mestring av psykososialt stress ved hørselstap” har vi utarbeidet en kurspakke basert på kognitiv terapi og erfaringer vi har samlet fra hørselshemmede gjennom studien.
Dersom du er interessert, nysgjerrig på dette kurset – eller kjenner noen kurset kunne være aktuelt for, nærmere informasjon:
Sidsel Haaberg, tlf. 22 92 35 02/951 57 782
Maj Volden, tlf. 916 20 315
Jenny Meling Hansen, tlf. 941 54 472
Kurset koster egenandel (for tiden 307,-) pr. samling – opp til frikortsgrensen.
Se for øvrig: her.
Communications is by far mostly verbal. Aside from the visual aspects (screen image, video/film, body language etc.), information is mostly spread verbally/auditory. Think about how much information exchange that takes place verbally in these arenas: education, court system, politics, entertainment, family, parties and so on and so on.
The last year or so I have engaged in voluntarily work, such as sitting on boards for the housing cooperative in my community (where I live) and for HLF Oslo (hearing association in Oslo, a subgroup of the national HLF) much like the HLAA.
On the HLF Oslo board I have been designated a role much like a CCO or PRO, in a political aspect, that is. A political interests spokesperson for HLF Oslo. Now, I admit, I have a lot to learn (which is part of why I want to do this ). One of the issues we are talking about working on is noise.
One aspect that is amazingly neglected in these aforementioned venues of auditory communication is acoustic noise. (it is amazing when you think of it, really! It takes very little resources, and the gains would be HUGE!)
Please take a little time to look at this, it explains it so well:
Was at appointment at hospital today. Time to give my Bionic hearing some sound adjustments.
Before I arrived at appointment I thought that there was no need to adjust anything. My speech comprehension is good, and the left ear is coming along nicely, slowly catching up with my right, steadily getting better and better “resolution”.
At first we discussed other related issues concerning my general wellbeing, and eventually, as I had time to think, or dawned on me: what is my biggest problem these says? Answer: the voice of my father-in-law and very thin women/Childrens voices.
Since I can’t improve both aspects at the same time, the choice fell on my father-in-law.
We boosted the bass, given that his voice is a deep one. I used my new smartphone to play a Rolling Stones classic to determine the right level of the bass boost. “I can’t get no satisfaction” is a simplistic rock’n roll tune that has song that is easy to catch. Therefore it is a good reference to use while determining the right amount of adjustment.
We ended up with doing the same adjustment on both sides, thus keeping both sides’ identically programmed.
I must say I’m surprised at how much better all sounds sound now! Even after all this time, there’s room for big improvements with just small adjustments!
I can’t wait to hear my father-in-law’s voice again, to see of the adjustments I made will make a difference. Luckily we’re bound to spend some time with my in-laws this summer.
Will my daughter’s crying be easier or harder to tolerate? Will my wife’s voice be more tolerable for me when I’m at my worst condition (tired, worn out, tinnitus and migraine raging).
And what about the music? I have lately felt that the music sounded a little anemic. This might be just what the doctor ordered 😛
I have a future post in mind, not yet mature, concerning the effect of my second implant on tinnitus. Right now I have another issue that needs (and gets) medical attention. I have in earlier posts explained about suspicions about migraine aura. In this regard I have been to a neurology specialist, and the first session brought these preliminary conclusions:
My balance is fine (as I said in earlier post, the problem with my balance is mostly in my head, i.e. due to my brains way of coping with the various sensory inputs, such as sounds from second implant.) This will normalize eventually. Relief 🙂
My nervous system is fine, the specialist could not find any indications to any damages nor diseases. Also big relief.
However, she wants to pursue a hypothesis: that my vision – sensory input, due to my deafness and general health history, somehow has turned oversensitive because the vision compensated for less and less audio input over the years, that is a pretty common and well known phenomenon (lip reading and similar compensating techniques). Meaning that my eyesight compensated for loss of hearing, thus eventually generating too strong vision-sensory input for my brain. The theory makes some sense.
I would also add the tinnitus as a similarity to this theory, I feel as if they correlate, if not 100%, at least partially. I often experience more tinnitus when I notice migraine tendencies and vice versa.
Also, the tinnitus developed (the debilitating stage) late on in my deafness history, and I think that was mainly due to lack of sensory input. My brain “created” tinnitus because it amplified the (more or less empty) signal to an extent that it also picks up the “white noise”, i.e. normal “background” neuron activity (very much like static noise on the FM band, or natural radiation, which will show up on any Geiger-counter). Now my brain does not know how to turn off that monster it created.
The neurology specialist want to take some measurements, i.e. EEG, and another one measuring the neuron activity upon retinal impulses (will add the proper name of that these here alter on)
After that, she might prescribe me with a low dosage of some kind of anti epileptic drug. That kind of makes sense too; in order to suppress some of the worst overload of the sensory input, this medication might just do that.
BUT: I await to see exactly what drug she will suggest, and what it’s side effects are. And based upon that, plus the dosage, I will make a decision. Having a history with depression, any medication with a side effect that might trigger depression, will not be a favorite in my book…
But then again, if that medication would help me recover from the tinnitus and/or migraine, it would be a big plus for my general health condition…
The tests will be taken soon, and meanwhile I try to get my newly implanted ear up to par with the first ear.
So far I have not had the strength to endure a longer period of time with just the new ear. I have both on at the same time, that is all right and very pleasing, since I notice all the time an improvement in general ability to pick up and understand speech. A plus is that I need a little less effort compared to before. So hopefully, over time, that will also make my overall energy levels go from nearly depleted to satisfactorily filled.
Regarding the ability to stand noise, it’s way better with two CI’s compared to one. Also, the tinnitus is more/better subdued by external sound with two input channels (two ears) 🙂 This is something I will write more about at a later time, when my new ear has gotten some more training, and I feel like a can draw some conclusions from the new experience…
|1975||Wears hearing aids for the first time|
|1995||Drops out from higher education, due to hearing|
|2001||Looses job, gets divorced|
|Early 2006||First thought of getting CI|
|Oct. 2006||Suffering full burnout syndrome collapse|
|28.12.2006||Starting ci4me2007.wordpress.com blog|
|Late 2006||My GP sends me to specialist as CI candidate|
|Late 2006||Begins cognitive therapy to counter depression|
|23.01.2007||Specialist gives me status as CI candidate|
|08.06.2007||Tinnitus begins to get seriously bad|
|14.09.2007||Complains about fatigue and eye problems|
|05.11.2077||Mourns the loss of music|
|06.11.2007||First notion of migraine|
|22.01.2008||Self-diagnose myself with “recruitment”|
|26.03.2009||Rikshospitalet gives me date for pre-trial|
|21.07.2009||First CI surgery, right ear|
|28.08.2009||Tinnitus worse, explosive terrorizing LOUD|
|07.09.2009||First CI activation, right ear|
|2010||Health improves somewhat|
|18.01.2012||Second CI surgery, left ear|
|27.02.2012||Second CI activation, right ear|
|Sad fact:||It took 6 years for the public health service in Norway to give me both CIs.|
|Sad fact II:||I could have been diagnosed deaf in 2004!|
Getting stereo again is just great, I kid you not. I have been walking on clouds this week, despite some troubles. (read more below picture)
Sound is, even though my newfound ear is very weak and undeveloped, much, much more gratifying to absorb. It is as if the sound world just came alive. From being flat, dull, monophonic, dead, boring and lacking essential information; it became vibrant, alive, all-covering and moving (to my brain) and complete.
Music is better, lyrics pop out much better (no matter how hard I tried with one ear, some things where not possible to grasp auditory, even though I knew what was being sung), vibrations in music, like harmonies are back in force. In short, music is alive and moving again.
So, get this: I love what is happening, and I can’t wait for the time ahead; I know I still have a lot of good stuff coming!
Now, that’s the white clouds, now over to the gray rainclouds…
My brain is simply overwhelmed by this. Day one to three was all about amping up the processor according to what my left side hearing nerves and brain could handle (without it becoming painful). On day three the mapping (all 16 frequencies per electrode) was on par with the right ear!
That is nothing but astonishing to me! The right ear (in fact, it is the brain that do this work) used maybe 2 years getting to that level, and a lot of trying and erring in terms of settings in the software. A lot of parameters concerning both resistance (in the fabric of my biological tissues, perhaps even buildup of some kind of patina on the electrodes), audio-physics (amplitude; the length of waves) and Clear Voice™.
But the overwhelming issue (Trouble 1) has a price: I am somewhat fatigued from before, with very little reserve to go on, and now it’s right down into the basement again. I have been there so much this winter, and frankly I’m getting very sick of it.
I have a family that also has to live with this; 4 month toddler with water in the middle ear (somewhat painful at times, she wakes up screaming her head off), and my dear wife has so far taken 99% of the burden of this. (image to the left is not of my daughter)
It’s so unfair to her! I can’t support her (take my share of the “workload”), and take care of Joanna the way I wish I could. Along with this issue, comes a strain on our relationship, mental challenges and so on. But, we’re coping, learning, and getting more and more secure with each other. It is in hardship a relationship is tested…
Having said that, we manage, and Joanna is getting medical attention. (we had her hearing tested, and she was then diagnosed with water in the middle ear in her left ear (otitis media))… We just have to wait and see what can be done. I really don’t want to puncture her eardrum….
Light headedness and balance issues. With the new new sound, my balance is set for another test-drive. Sound input is clearly affecting my balance. It feels as if my brain is swimming inside my skull. I also have a feeling of difficulty of fixating my eyes (it only feels like that, I can read and drive and play computer games just fine). It is weird, because getting this new sound is a satisfying experience, at the same time it feels confusing to ALL my senses.
I guess the three years of complete silence on my left ear made the nerves rather raw, and now I’m dancing on these raw nerves!
Vision affected. As I mentioned in Trouble 2; feels like trouble fixating (but not real). It’s all in my mind, but it certainly makes me tired. This problem is particularly felt when I move my head in any way. Balance is closely connected to vision.
All these things combined takes it toll. OK, I’m only on day 6 of this new era of my (our) life. Give it time and it will get better, of course. But the idea of putting this into the blog is to share experiences and be a little part of the experience and data-bank internet is… I hope writing this gives other people (my family, friends, health authorities, my government and everybody else who might be interested) better insight. And in turn are able to make better decisions in the future.
It is my opinion that todays political handling of deaf-operations in Norway is poor, substandard and backwards. A lot can be done better, and the best part is that making better decisions will actually save the society a LOT of money in the future!
But in order to do that, we have to get knowledge and insight across. This is my humble attempt to do just that…
Very much like my first ear did in the beginning. It’s very light, helium-ish. And music and speech sounds are very noisy by itself (isolated). Robotic is the best description I can make.
It’s strange, because along with my other ear, noise isn’t so tiring as it was with only one ear… And sounds sound better with both ears working together. Even when this new ear is still “fresh”, infantile and by itself almost useless.
But something is different, and I guess it’s the brains ability to interpret the sounds. This interpretation is better now, since my brain has already learned one time from my first CI. I can actually understand speech, although I have to utilize my lip reading skills to pull that off I know that given time, it will improve, and I’m not at all stressed about that
Not much conscious training yet. I’m just trying to find my level of comfort, and to find my balance, both in my body (head) as well as in my energy levels.
I have them on as much as possible, but take it off when I need a break. Volume has been turned down on both, and I understand speech better, even then, so that is very much a promising sign to me.
When things get better, I will start working on this new ear by itself, in order to get it faster up to speed with the first ear.
I have had one good day so far, where I felt better, in terms of energy and not being overwhelmed. That was yesterday. I then did a lot of stuff (you know, things are waiting for me ), and have the feeling of having to pay for it today But that is a good notion, thinking of it, I had my first OK day yesterday (being bilateral, that is)
Tinnitus is still there. And on my new ear it is shouting through a new channel when I turn off the sound. But it was like that with first ear too, and it calmed down. While I have sound on, with both ears, tinnitus is much less of an issue now. The stereo-sound is masking the tinnitus fairly well.
If I get tired or agitated, it comes back full force almost instantly.
Some pain in both ears from time to time. But the pains are mild, more like a reminder of how the pain from surgery used to be. Could it be some kind of reverse psychosomatic thing?
Stress level is fairly high, given the fact that I stress with being weak and not able to support my family the way I wish I could. I use some mental energy to tell myself that it’s not something I can do something about, really, and don’t feel guilty about it. Emotions and logic don’t always follow… But I have made myself my own therapist now. I know the mental pitfalls, and I know the right questions, and I get the right answers rather quick…
I ask myself this question these days: am I very good at being sick and fatigued? Can that be a pitfall in itself? By being good at coping with hardships, have I forgotten how to handle myself and life when things go well?
Mette, you have my eternal gratitude and outmost respect for the way you have overcome the hard nights and busy days with me going on 20-30% engine!!! I love you!
Finally came the long awaited activation day for my second Cochlea Implant. Did go by myself this time, knew a lot about what was going to happen and so forth.
So, first we went through the the initial single electrode check and level determination (in order to avoid a cataclysmic neural shock to the neurotransmitters after 3 years of total silence (except the tinnitus, that is).
Then we turned on, and after carefully increasing the volume, I could hear the audie’s voice, and this time it was somewhat intelligible! Right out of the box I could understand the sounds getting into my brain from the second implant. The difference from activation of CI#1 to this one, was like night and day. CI#1 was Morse code, chaos and utterly hellish to listen to. CI#2 is beautiful and crisp clear. Painfully clear.
As soon as the first setup was done, it was out into the world to test and work the volume up a bit. I turned my CI #1 completely off. First sounds I could not identify visually, all though they sounded a lot like someone walking with high heels (maybe from somewhere I couldn’t see).
I went into a café and sat down with a coffee and a bite. Turning up a bit more, and the sounds of tableware and glasses being shuffled about in the kitchen were almost unbearable. The sounds made my head spin, seriously. The fun part is that it feels like it makes my head spin the OTHER way, compared to CI#1. I hope this is some kind of sign that CI#1 and CI#2 somehow will balance each other!
Then I wanted to kind of be in the moment, and I picked up my newspaper. I had just turned on CI#1 in order to try to minimize the head spin feeling. I couldn’t help myself grinning like a fool, because now I heard the rustle of the paper going from my right side over to the left, with PERFECT clarity! Yes, I grinned and almost laughed at the sound of turning the newspaper page! That’s when I really had my first bionic stereo CI-moment. The moment I had been looking forward to for three years! It was perfect!
So after celebrating a bit with friends on Facebook, I had to go back to do another programming round.
Leaving the hospital, I ran into an acquaintance, Kate, who is seriously researching how to best live and cope with hearing loss in society. (use Google translate if you have a hard time reading Norwegian ) She told me I was beaming, looking very happy, and I guess I was Walking on clouds and being very happy, indeed.
Further up the street, I heard a crow caw, but could not decide direction. But the sound came from both sides, like in a dream! A few seconds later a taxi drove by, and this time I held my head still, and most certainly got the sound passing form one ear to the other! It brought tears to my eyes. Oh JOY!
Being this happy for stereophonic sound tells me that man was made with two ears for a reason! Giving deaf people only one CI for economic reasons is just plain WRONG. It’s beyond my comprehension that someone can think that one ear might be sufficient. It ISN’T!
Coming home, I could hear my wife and 4 month old daughter for the first time with this new ear. And they sound beautiful! Especially Joanna’s baby conversation was like music
This will be a good process. Given the experiences I had with CI#1, and the challenges I faced and conquered, this will be a victory parade down Avenue des Champs-Élysées
Got word yesterday, that I will get stereo back Monday 27.2 at Rikshospitalet. I’m now looking very much forward to getting started on the last leg of my very long CI-journey.
I’m quite tired of this, and just want to get on with living and forget about it. I have been working on coping and surviving this (slow oncoming deafness) for the last 12 years, I found out the other day. In retrospective, that is a long time indeed, and it has been part of most of my life: becoming deaf.
But now I will become hearing again, for real. One CI didn’t cut it for me. I have been able to cope, but just barely.
The hope now, is that I will start to get some amount of energy surplus, in order to get on top of things, instead of struggling most of the time…
Crossing my fingers with careful expectation and preparing for the worst. Nothing is given until I have turned the sound back on and lived with it for some time… I expect my brain to do some heavy adaptation fresh out of the gate, and then the race is on. We’ll see how fast/good I can get
Image: Auditory functional MR imaging
with music. Axial plane is parallel to sylvian fissure at Heschl’s gyrus level. Intensity of activation varies from high (yellow) to low (blue). Bilateral activation of primary auditory cortex is seen, with extension to secondary auditory cortex more pronounced on left. (source)