Another chapter…

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.

Why sign-language now, after two CI’s?

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.

The price to pay

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.

My health, post-CI

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.

Rebound

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.

CI and sign-language?

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.

Ambient noise wears me out

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 part of sign-language

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….

Michael Chorost explains the concept of Cochlear Implants.

The Author of “Rebuilt”, Michael Chorost was recently captured in a video interview published on YouTube. I found his explanations so elegantly put, that they should be viewed by everyone interested. A lot of information, but at the same time, very elegantly put and easily understandable.

Hope you enjoy these: it’s divided into four videos, and 1,2 and 4 are captioned… (don’t ask me why the third isn’t captioned, I don’t know)

Part 1

Part2

Part 3

Part 4

Insight through peers

A little while ago I received a comment on this blog. Richard Rutherford had something very important to share. I feel compelled to provide his thoughts to you all, in it’s own post. The initial reason for that is because of what he put his finger on: the issue of audism related to self destruction-mechanisms. I feel he definitely has a very good point. In addition, we had an exchange of thoughts afterwards, which produced additional noteworthy points (these are expressed at the bottom of this post, after the “letter”!).

I had not thought about this issue from the aspect that Richard offered, which is such a beautiful thing about this form of communication (i.e. blogging); one thought or experience leads to another thought. Richard puts it so well in his letter, that I put it here, word for word. (Richard, you should seriously think about writing your own blog :-)  )

As a comment, I would like to say that this issue, even though I didn’t realize it until I read his comment/letter, was one of the major things I worked with during the two years of psychological therapy I underwent in 2006-2008.

(I underline the good stuff, which I found particularly interesting, add links and images which I find suitable (for your viewing pleasure 🙂 ))

So, here it is:

=====Start of letter======

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

Status update III – part 1 of 3 – Sensory input

Since I’ll be going offline in order to be a farmer, welder, lumberjack, car-mechanic and on top of that plans to undertake some kayak expeditions in Sweden next week, I might as well get my overdue status report out now. It became so long, I decided to split it in three and they will automatically post while I’m away (how neat is that 🙂 )

My hearing and health status is difficult for others to comprehend. I have done a decent job explaining it to my family in small doses. Part of the problem to make others understand, is that it has been hard to understand for myself. It is a condition that seems kind of vague. Since I have no way of real comparison as to what is “normal” level of function, I have been assembling data here and there. Talked to post-CI operated, read some literature and most of all researched on the glorious WWW. The process is ongoing.

My hearing and health status

Technically I have a profound hearing loss. I’m almost as deaf “as a doorknob” as Abbie so nicely put it. A few remaining hair cells in lower frequencies up to around 1000 Hz (1 kHz) is all I have in my residual hearing. I have explained “recruitment” before, and that is still a big issue. Consequently I suffer from hyperacusia, which gives med a kind of head-ache within seconds. It feels like being struck hard on both sides of my head (by the ears) at the same time with something physical (as in blunt violence). The pain then seems to go through my head from ear to ear, kind of pulsating into the brain.
Sources that are prone to give me these hyperacusia-attacks is: my son when he forget himself and shouts/screams, the refrigerators compressor when I stand close to it, cars and traffic, multiple sources of sound (especially when trying hard to comprehend speech, the sounds coming from my computer (not sure if it’s vibration sound from hard drives or the chassis fans. The list of troubling sounds go on and on.

Secondary sensory disturbances are making themselves more and more noticeably.

Feeling of vertigo is increasing, and from time to time I experience trouble with my balance. I almost trip and have to make corrective steps quickly in order to prevent myself falling to the ground. Especially when visual context changes quickly, like first looking up at trees and the sky and then looking down on the ground. Or if I walk down a corridor, and stairs appear right around a corner… The sudden visual change from flat floor to stairs going down is becoming a challenge. Railing next to the stairs are a good thing for me now. This is a problem going down. Not so much while going up the stairs.

Photophobia is more acute than ever. White clouds are the worst weather condition for me. I can have trouble driving when the sky is white with bright illuminating clouds. Under such conditions, my eyes feel sore and I squint as much as possible, and sometimes the eyes get filled with tears. Sunshine doesn’t bother me much as I can avoid the direct source. An entire sky with bright white clouds are a little more difficult to shield from.  Thank heavens for sunglasses.
I also experience dry eyes after a day with a lot of light. My nice cozy 24″ computer flat screen can illuminate quite well, to the point of discomfort. Good thing all this is adjustable. I use a lot of dark colors on software’s skins, on desktop and so on. Also I have adjusted the panel itself to lower brightness. Let’s just say that at times I blink a lot, and I do take breaks.

My letter to the Norwegian Treasury Department

The text has been translated and changed some, compared to the original letter in Norwegian.

My status and reason for writing this letter:

I have been hard of hearing all my life, and at the same time I have been working like everybody else at 100% in the IT-industry for as long as I could. Never learned sign-language. I am now deaf and I am not able to work. I wait for a bilateral CI-operation.

My general health is very much influenced by tinnitus and hyperacusis. It means I can’t stand certain sounds or loud sound. This phenomenon is examined closer in the article ”Recruitment”.

There are significant mental health aspects to my condition too, and that also affects everybody close to me.

It has been a several year long process to acknowledge the fact that I am now deaf. In this process I have made many experiences with “including work life” (aka link to NAV about IA (norwegian), follow this link for more information in English.), NAV and the healthcare system. Some positive, of course…

Where I am today

Despite a strong inner will, and a desire to be part of the working life I am hindered by the fact that I have to wait for the CI-operations that can give back my ability to function in everyday life again. I have IT-skills that are extremely sought for in the IT-industry today. I would be hired “on-the-spot” by one of the largest telecom-companies in the world; Telenor, to work with projects in the top management group for the Norwegian Business Division. It is a frustrating place to be right now, waiting for those CI’s.

My main point:

We have a serious socioeconomic flaw in our bureaucratic systems in Norway in 2008. Work disabled individuals like me, do not get adequate medical treatment that ensures our society continued productivity from same individual. I use myself as an example:

My hearing diagrams

Finally got myself around to scan these charts and post them here 😀

First of all, here is a source of terminology and technical explanations related to sound.

From 2004:

The yellow “banana” is the speech discrimation area for normal hearing. Deafness is defined as below 85 dB. The measurement stops at 100 dB. On this measurement I was intent on doing the best I could, so I probably cheated by looking at signs in the face of the lady doing the test, through the looking glass from the booth I sat in…. Another problem is phantom sounds or echoes that appear from the test itself. Did I hear it or not? Was it a phantom sound or a real test sound? I have taken this test so many times that I quickly get the rythm of sounds from the audiologist and know when the sounds go up and down… I know their testing regime instinctively… Sad thing it only hurt myself when I cheated on the tests, the hearing aids were adjusted based on these results…

From 2006, 2 years later:

 

A noticeable drop in the 125 to 500 Hz-area (the deepest bass sound frequencies). This is the last test I took before commencing the long road to a CI in Norway. There is no doubt, the hearing is declining and I am clinically deaf, and have been for some time….

I also took a speech comprehension test (bottom chart on the 2006 diagram) and I think I scored 0%… What I heard I could only take a wild guess on….

What’s next?

Not before long I will post an abridged translation of a letter that I have sent to the Norwegian Treasury Department (Finansdepartementet). This is something I have been working on for some time now, in the wake of the budget cuts at the premier hospital i Norway; Rikshospitalet (ref. last postings regarding my interview on national tv etc). This work was also the reason why I needed “time” off from my blog (good thing the Easter came in the middle of this). Stay tuned friends!

Captioned video of me on national news 27.02.2008

Having trouble embedding Overstream into wordpress…

Pls follow this link:

http://www.overstream.net/swf/player/oplx?oid=toliustbimmh&noplay=1

Explaining the analogy: "Recruitment" of hair cells in cochlea

During my research into my own declining hearing- and health condition, I came across information about a phenomenon regarding hair cells in cochlea called “recruitment”. I strongly suspect “recruitment” is what happens to me. It certainly would explain a lot of the things that happen(ed) to me and my hearing and the fatigue…

(Most of the text that follows is copied from this page at hearinglosshelp.com and edited by myself for the sake of this blog and my readers.)

What is “Recruitment”?

Very simply, “recruitment” is when we perceive sounds as getting too loud too fast. How is it possible to hear too loud when the hearing in fact is vanishing, you may ask… Well, be patient with me and read on…

“Recruitment” is always a by-product of a sensorineural hearing loss. If you do not have a sensorineural hearing loss, you cannot have “recruitment”. In simple layterm this means that this condition only affects those who have a significant loss of hearing caused by haircell-damage in cochlea (mainly).

As a sidenote; there are two other phenomena that often get confused with “recruitment”. These are hyperacusis (super-sensitivity to normal sounds) and phonophobia (fear of normal sounds resulting in super-sensitivity to them). Both hyperacusis and phonophobia can occur whether you have normal hearing or are hard of hearing.

An analogy for understanding how “Recruitment” got its name

Perhaps the easiest way to understand “recruitment” is to make an analogy between the keys on a piano and the hair cells in a cochlea.

The piano keyboard contains a number of white keys while our inner ears contain thousands of “hair cells.” Think of each hair cell as being analogous to a white key on the piano.

The piano keyboard is divided into several octaves. Each octave contains 8 white keys. Similarly, the hair cells in our inner ears are thought to be divided into a number of “critical bands” with each critical band having a given number of hair cells. Each critical band is thus analogous to an octave on the piano.

Just as every key on the piano belongs to one octave or another, so also, each hair cell belongs to a critical band.

The requirements for “Recruitment” 

When you play a chord on the piano—you press two or more keys together but they send one sound signal to your brain. Similarly, when any hair cell in a given critical band is stimulated, that entire critical band sends a signal to our brains which we “hear” as one unit of sound at the frequency that critical band is sensitive to. This is the situation when a person has normal hearing.

However, when we have a sensorineural hearing loss, some of the hair cells die or cease to function. When this happens, each “critical band” no longer has a full complement of hair cells. This would be analogous to a piano with some of the white keys yanked out. The result would be that some octaves wouldn’t have 8 keys any more.

Our brains don’t like this condition at all. They require each critical band to have a full complement of hair cells. Therefore, just as any government agency, when it runs short of personnel, puts on a recruitment drive, so too, our brains do the same thing. But since all the hair cells are already in service, there are no spares to recruit.

Getting to the point – what “Recruitment” means

What our brains do is rather ingenious. They simply recruit some hair cells from adjacent critical bands. (Here is that word: recruit or recruitment.) These hair cells now have to do double duty or worse. They are still members of their original critical band and now are also members of one or more additional critical bands.

With only a relatively few hair cells dead, then adjacent hair cells may just do double duty. However, if many hair cells die any given hair cell may be recruited into several different critical bands, in order to have a full complement of hair cells in each critical band.

 

 

The results of the phenomenon known as “Recruitment” – the conclusion

The results of this “recruitment” gives us two basic problems. (notice the underlined parts!)

1. The sounds reaching our brains appear to be much louder that normal. This is because the recruited hair cells still function in their original critical bands and also in the adjacent one(s) they have been “recruited” into.

   Remember that when any hair cell in a critical band is stimulated, the whole critical band sends a signal to our brains. So the original critical band sends one unit of sound to our brain, and at the same time, since the same hair cell is now “recruited” to an adjacent critical band, it stimulates that critical band also. Thus, another unit of sound is sent to our brains. Hence, we perceive the sound as twice as loud as normal.

   

   If our hearing loss is severe, a given hair cell may be “recruited” into several critical bands at the same time. Thus our ears could be sending, for example, eight units of sound to our brains and we now perceive that sound as eight times louder than normal. You can readily see how sounds can get painfully loud very fast! This is when we complain of our “recruitment”.

   In fact, if you have severe “recruitment”, when a sound becomes loud enough for you to hear, it is already too loud for you to stand.
   

2. The second result of “recruitment” is “fuzzy” hearing. Since each critical band sends one signal at the frequency of that spesific critical band, when hair cells get recruited into adjacent bands, they stimulate each critical band they are a member of to send their signals also. Consequently, instead of hearing just one frequency for a given syllable of sound, for example, perhaps our brains now receive eight signals at the same time—each one at a different frequency.

   The result is that we now often cannot distinguish similar sounding words from each other. They all sound about the same to us. We are not sure if the person said the word “run” or was it “dumb,” or “thumb,” or “done,” or “sun,” or? In other words, we have problems with discrimination as well as with volume. If our “recruitment” is bad, our discrimination scores likely will go way down.

   When this happens, basically all we hear is either silence, often mixed with tinnitus or loud noise with little intelligence in it. Speech, when it is loud enough for us to even hear it, becomes just so much meaningless noise.

   This is why many people with severe recruitment cannot successfully wear hearing aids. Their hearing aids make all sounds too loud—so that they hurt. Also, hearing aids cannot correct the results of our poor discrimination. We still “hear” meaningless gibberish.

   However, people with lesser recruitment problems will find much help from properly adjusted hearing aids. Most modern hearing aids have some sort of “compression” circuits in them. When the compression is adjusted properly for our ears, these hearing aids can do a remarkable job of compensating for our recruitment problems.

Technorati Koder: recruitment,fatigue,disorder,hair cells,cochlea,deaf,deafness,hard of hearing,understanding hearing loss

Dreams with captioning?

Ever imagined getting captioning in your dreams? I received a question from one reader yesterday that made me analyze my way of dreaming.

The question was wether I hear sounds in my dreams or not, being almost deaf and having lived with hearing aids since the age of 4. As opposed to people who has been deaf all their lives, and report that their dreams has no sounds.

I couldn’t answer the question inpromptu, since said questioneer never left any contact-information, but hey, it’s an interesting issue and since I had a very vivid dream last night, I might as well make a little post of it 🙂

The dream last night involved high speed car driving, a big explosion, some nature and various scenery (sort of like an industrial site, maybe an open mine). I can definitely say that I dream in colour! The car was a black Aston Martin Rapide, the grass was vividly green, the tarmac was black with white and yellow stripes on it and fences had a colour of metal (among other things).

As for sounds, most of the action was without sounds (no engine sounds, no screeching tires etc), but I dreamt that the car had a 26″ grenade shell (!) with it (plus a smaller one, for some reason). It was the kind of grenade that is loaded into huge cannons and it was compromising evidence that needed to disappear after a traffic incidence (because of the wild driving, I guess). So the car (with my son in it, for some reason) sped away from me after it had rolled sideways down a grass-slope. The driver needed to find a remote area where the grenade could be detonated and hence be disposed of…  (I know, it was a wild dream!!! 🙂 hehe )

And this is where I get to wether I dream in audio or not. I dream in audio a little bit, because I remember that I heard the explosion (I did not see it), and started to run towards the origin of the sound.

So there you have it! Mostly I dream in facial-expressions, peoples actions, my actions (like running, trying to run, flying or trying to fly etc) and with colours. Not so much with sounds, although sometimes, and almost never (afaik) in actual conversations. I guess I’m a very “visual” kind of dreamer….

And no, I do not have dreams with subtitles, allthough that would be nice 😉

What I hear (or what’s left)

It would be a good idea for me to put down some kind of status as to how my hearing is these days (as a baseline):

Without my hearing aids I can barely hear:

• My son singing at certain notes at the top of his voice (gives me echo-effect on that frequency until I hear new sounds)
• A tractor right outside my windows (5 meters away)
• Only the bass from music

With hearing aids in quiet surroundings I hear:

• Well enough to understand spoken words with the aid of lipreading (better if my head is clear and rested)
• When really silent: a noisy refrigerator, traffic noise outside the building, an airplane or helicopter in the sky. I get a “white noise” sound from running water.
• My external hard-drive – the spinning disks vibrate into the wooden table.
• Other peoples voices in the room, but cannot understand without lipreading.
• Familiar voices on the mobile for short conversations and messages. I most often have to repeat and ask for confirmation. It’s border-line.
• Other peoples footsteps in same building, maybe a slamming door.
• Static noise from electrical FM-devices like my Phonak Smartlink

With hearing aids in a “quiet cafe” surrounding I can hear:

• Spoken word if not more than 1 meter away, but I have to concentrate really hard
• Other people speaking, but cannot make out what is said.
• Music, but only in the form of unrecognised sounds…

 With hearing aids in noisy surroundings I hear:

• All sounds are garbled and mixed in an impossible soup of noise
• I can extract a voice from 50 cm away if noise isn’t too bad, and I know the subject and the person (if I’m used to lipread whomever, it’s a better chance of understanding)
• Cars and trucks travelling at high speed close by me
• Dogs barking loud

When waching a movie with sound directly into my hearing aids I am dependant on captioning. Environmental sounds like running water (splashing), wind blowing, birds chirping etc are lost completely. Spoken words are not understood at all without captioning (dialogue is most often switching and camera angles changing too fast for lip-reading to be effective enough).

Music has lost it’s magic during the last few years. I can sense the rythm, and hear most of the bass and drums. Percussion is completely gone. Perception of vocals depends on type of music and what tone the voice has. Guitar has disappeared slowly last few years, now it’s not “swinging” at all anymore…

I wrote down this, because I want to use it to compare later when I get the CI (my personal baseline).

Mentally drowned

Feeling of defeat is not a good feeling. Yesterday I attended my fathers 60th anniversary celebration and had some experiences with my hearing, or rather, the lack of hearing…

In the days up to his celebration yesterday, I had my son with me as I usually have every second (extended) weekend. This time I really had my hands full just dealing with my son. Not that he is raucous or anything. But my strengths go only to a certain level these days as demonstrated yesterday. I was supposed to bake a cake to the celebration, which I had voluntarily said I would bake. And I really wanted to do it, too. But the thing with my memory when fatigue hits is that it’s very similar to what happens when one has depression; performance is poor…

Luckily one of my brothers has gotten a knack for baking himself lately (as he is expecting his firstborn I guess his domestic consciousness arises 😉  ) and the cake supply was sufficient.

Family members who hasn’t seen each others for a few years have a lot of catching up to do. Usually I try to arrive a little early, in order to be able to have a few words with whomever gets in before there’s too many. This time the weather was bad with blizzard so the drive took it’s time…

I sat down in the couch in the corner (always try to avoid getting any sounds behind me) and could not distinguish anything that was being said around the table.

Being happy to see relatives, wondering what had happened in their lives lately, I guess I tried too hard in the beginning. I quickly got tired from trying to follow conversations.

My blessed super girlfriend sees right through me, and could tell how tired I became just by looking at me. She made me aware to take a rest by turning my hearing aids off. But in a situation like that it’s nearly impossible to be able to rest, because my eyes do most of the work. I scan the room to see if anybody has their eyes directed on me, if they are talking to me. And every now and then someone does talk to me, and I turn on my HA and lean forward to try to decipher what they ask me…

After a few hours I was shot… Simply shot….  No strength left, and I was on my “emergency battery”. I told everyone that I had to leave because I didn’t feel good, and I gave them a quick explanation. I’m lucky to have a understanding family.

But the feeling of defeat was quite heavy. I felt forced to withdraw before I wanted to. I hated it. But it was necessary…

Yesterday it was clearer than I ever have experienced… It is very difficult to describe the state of my condition then, but I’ll give it a try:

If you take a whole pack of chewing gum and chew on it a whole day you know you are bound to have an aching jaw, ok? This was quite a similar sensation: the side of my head felt like it had been pounded by someone with boxing gloves for a few hours. Headaches (on the sides, around my temples), a sensation of dizziness and all sounds was kind of like painful. The sounds were unpleasant and felt intruding and annoying.

Today, as I write this, my head still has this ring in it. I write this now even before I have gotten out of my bed, because I know that not before long, I will be mentally too tired to conjure any text like I want to…

It’s a hellish place to be… Like being forcefully drowned mentally. And because the transition to deafness is so slow for me, I have fallen in some kind of trap, by not being able to protect (get CI) myself in time.

But here I am, and I have to take care of my son, myself, and keep on with my life. I know there is a solution for me up ahead with the CI, and it can’t come soon enough!!!

I have high hopes for 2008 to be the year when I either get word of when my first CI will be inserted…

I need it badly, as confirmed yesterday….

Technorati Tags: fatigue,near deafness,CI,cochlear implant,senses,hearing,condition,sick,symptoms,out of it,drained,unpleasant

In sickness and health

Coming from a lot of resting and relatively no stress I can feel somewhat energized. But the feeling of fatigue is less than one hour away still, and that can be frustrating. But I have come to terms with the fact that this is how it is – for now anyway. And I feel that I’m getting better a little at a time. I hope it’s not just wish-thinking…..

Yesterday I came down with a regular cold. Comes with the season, and especially when you have kids roaming in germ factories like schools.

All hearing aid users probably know this: being hard of hearing makes you a extra deaf when being “stuffed” and having to blow your nose every ten minutes or so… But for people who do not know how it is to be hard of hearing and use hearing aids, it’s virtually impossible to understand the impact of a common cold on hearing aids users. This is what I want to try and explain now.

When common cold occurs, one is likely to get an increase in internal pressure in the neck/throat region due to various swollen glands. This in turn puts pressure on internal organs in the head, hence headaches, light-sensitivity and REDUCED HEARING. When the cochlear has more internal pressure where the hair-cells are situated, the gel-substance that carries the sound waves to the hair-cells is a little less sensitive. That means that the overall amount of energy that reaches the hair-cells in cochlear is being reduced.

Then there’s also the impact of all the fluids that forms in the sinuses.
With reduced hearing in the first place, such an reduction on the hearing gives a larger effect on hard of hearing, thus making us more deaf.

Aside from the normal symptoms of common cold that makes you tired, feverish and so on, it also makes near deaf’s have to put even more energy into the business of communicating.

I propose that near deaf need an extra low threshold for sickness leave from work etc. It is also important that the employer understand the fact that common cold has a stronger impact of people with hearing disability.

Technorati Tags: sickness,fatigue,health,understand hearing loss,near deaf,cold,common cold,symptoms

Dreaming deafness

Woke up early today from a vivid dream…

I was at a banquet or an award show or like, and the hostess and host of the show somehow pointed me out among a lot of people and started making their way towards me.
That would normally be the last thing I would wish for, as I have had a lifelong fear of appearing stupid in case I answered wrong. (you know, if I didn’t hear the question properly, I would answer something else, thus making it funny for everyone…)
With microphones jammed up in my face and spotlight zooming in on me along all the attention from everyone present, they started asking me easy questions I was able to answer ok, you know, to warm me up… 
Then the guy came “to the point” and halfway into his question I lost him completely. That would be where I normally wanted to sink into the ground and die of shame or embarrassment. In this dream I just said: “I’m sorry, I didn’t hear you.” Being very calm inside, laid back and not stressed, I waited for their next move. Somehow the social pressure on me was gone, because they had a show to pull off, and by picking me the “joke” was on them. I could see the guy lost his nerves and didn’t know what to do. At such instances I feel terribly sorry for the person, and want to help, but in this situation they were interviewing me, and I could not help by taking charge of the conversation as I normally would.
The woman stepped in for a try and she failed too…. then I woke up, wide awake…

This was a weird good dream for me. Can’t remember last time I had a dream about being out there publicly. And the thing that hits me about this dream is that I’m just being me and honest about it (that I can’t hear everything), unlike before in my life, where I’d have a number of strategies for “handling” such a situation, thus “saving face”. Doesn’t matter what kind of situation I’m in, I’m who I am… Near deaf and all 🙂

I think this dream was some kind of milestone for me.

Technorati Tags: dream,dreams,deafness,deaf,psychology,dreaming

Fatigue epiphany

Just back from a session with my psychologist, where I dealt with the matter of fatigue. I learned something new about myself, and I guess this knowledge could be useful to many who are hard of hearing or near-deaf.

The state of fatigue is the subject that I want to raise here. Of course fatigue can have many reasons, both external, internal, material and spiritual. I want to discuss the mental aspect of it that became very clear to me today: When I get the notion in myself, that I’m tired, it starts a whole range of other reactions:

Emotions:

• anxiety (am I sick, is something wrong with me?)
• stress (what did I do to become so tired??? why is this happening?)
• sadness (the feeling of fatigue sort of disables me from being energetic, joyful and contributing to my surroundings)
• hopelessness (damn, is this how my life has become? Is this how I’m supposed to live my life???)
• and many more… (it is a little chaos of mixed emotions)

The emotions manifests into:

• Stomach feels like a brick, hard and heavy
• Neck becomes stiff
• Sensations of pain are more prone (backache, headache, muscle and tendons)
• A constant state of emergency (to put it short)

Last week, when I spoke with my incredifaboulofantastic girlfriend about this subject, we agreed that when I have the notion of being tired, I should simply say; “I need a break”.

This was the genius of it: instead of saying that:

“Oh, I am tired, I need to go by myself and be more tired” (thus pushing myself even further into the mental state of fatigue),

I can say, “Oh, my senses had a handful, they need a little rest, and then I’ll be fine again”.

By digging into the notion of fatigue, and really FEELING the weight of the emotions, I have also become more aware of what is happening to me in terms of thoughts, reactions and the results of those… This way; I can make a difference in myself by avoiding chains of thoughts that give me negative emotions and drain me even further of the precious energy I need to cope with the present situation of being near-deaf…

I hope this means something to someone, because it was an epiphany to me!

Technorati Tags: psychology,deafness,near-deafness,rehabilitation,health,life,fatigue

Midlife – on new paths

A pilgrim walking alone
Memory of a time lost
Seeking purpose, connection
From here on

A lot said and done
Not all undone
Lack of time lack of sight
Thinking; time heals all

In breath and movement it still sits
Unleashed, untouched made to ice
Inner frost, loneliness and grief
Pushing for release

New sounds, and paths
Demands new compass and maps
A lone pilgrim still walking
Towards greater insight of body and mind

“Midtlivs – på nye stiar” by Inger Anita Herheim, freely translated from Norwegian by Ulf Nagel

Status update

Tinnitus is still there, disturbing concentration and sleep. The left ear seems to want to join the debate as to wether the hair-cells in my cochlears are about to wither and die or not… For the time being, the tinnitus is bearable because it’s inaudible during the time I wear my hearing aids (HA). But I have noticed times when the tinnitus breaks through even when I wear my HA. So the signs is that the tinnitus will not subside or fade, on the contrary…

Fatigue is still severe and limiting my activities on a daily basis. However, I have now organized my life in order to have less activities, and it feels good. I get more ability to initiate things I want or need to do. I still have to do a job regarding my own mentality towards the fatigue (how I cope with the feeling of being “empty”), but having said that, I have now eliminated most possible external causes for the fatigue.

Bilateral CI-operations are still my number one priority in the long term. In short term it is my son, girlfriend, family and myself. As for the CI, I do research, talk to people, evaulate back and forth. I have also checked out the status of stem-cells research of regenerating hair-cells in the inner ear, and the conlusion is that it is indeed exciting and promising, but not plausible to expect within the next 10 – 15 years. That rules out stem-cell therapy on my part. If I by getting bilateral CI-implants ruin the possibility of stem-cell regeneration of my cochlear hair-cells, so be it. I live now, today! That will be for the next generation of deaf and near-deaf.

I mentioned music in a posting yesterday; The music’s over – for now… Since I started this blog, the time spent listening to music has declined automatically and quite evenly as I started reducing the strain on my ears as an experiment. It requires too much concentration of me to listen to music anymore. Before I could get a kick out of music even when relaxing. Today I need to really focus and also have the lyrics in order to “get” something from the song I’m listening to… After a very short time it starts to feel like my head has been through the washing machine…

(Reminds me of “It’s all gone – Pete Tong” – a movie about a DJ who looses hearing)

Symptoms from too much sounds:

• Pounding and pulsating sensation in head (brain?)
• dizzy (I’m even getting troubles with balance if I overdo listening),
• my counscious level is reduced (like I’m sleepy but I’m not),
• concentration has diminished (harder to follow what people say to me, I concentrate harder),
• cognitive skills reduced drastically (I know this thanks to my un-scientifically measurement method using Su-Doku)

and…  I suspect I’m getting mild migraine from time to time, even though that could be related to the fact that I quit nicotine permanently 18 months ago. My brain is perhaps still adjusting to the fact that my blood-vessels are getting sound and healthy again. The migraine-tendency could be caused by dilated blood-vessels in my brain, and if this is the case, those pains will subdue soon… Prone to light-sensitivity, I also turn down the intensity of lights.

On a personal level, my life is good, I enjoy being a father, and have a wonderful girlfriend with whom I can spend time. My family is close to me, and somewhat engaged in my condition. Friends still keep in touch with me. I’m feeling active and engaged, working on several “projects”, including this blog and fixing up my apartment and helping my mother and stepfather with their recently aquired small-farm. I keep in touch with former employers, and have moral support from them, have several contacts in the near-deaf-community and so on.

The Doors – When the music’s over

Recently I have stopped listening to music on a regular basis. This saddens me deeply, and I feel it will be fitting to take a moment to mark the transition to real deafness with a piece of music made of a band I truly enjoyed listening to: The Doors. Even more befitting is the song I selected… Hope you enjoy it more than I am able to!

(Mind you, I will be able to hear music again if the CI-operations go well!!!)

Lyrics:

Yeah!

When the music’s over
When the music’s over, yeah
When the music’s over
Turn out the lights
Turn out the lights
Turn out the lights

When the music’s over
When the music’s over
When the music’s over
Turn out the lights
Turn out the lights
Turn out the lights

For the music is your special friend
Dance on fire as it intends
Music is your only friend
Until the end
Until the end
Until the end

Cancel my subscription to the Resurrection
Send my credentials to the house of detention
I got some friends inside

The face in the mirror won’t stop
The girl in the window won’t drop
A feast of friends
“Alive”, she cried
Waiting for me
Outside

Before I sink into the big sleep
I want to hear, I want to hear
The scream of the butterfly

Come back, baby
Back into my arms

We’re gettin’ tired of hangin’ around
Waitin’ around, with our heads to the ground
I hear a very gentle sound

Very near, yet very far
Very soft, yeah, very clear
Come today, come today

What have they done to the Earth?
What have they done to our fair sister?
Ravaged and plundered and ripped her and bit her
Stuck her with knives in the side of the dawn
And tied her with fences
And dragged her down

I hear a very gentle sound
With your ear down to the ground
We want the world and we want it…
Now
Now?
NOW!

Persian night, babe
See the light, babe
Save us!
Jesus!
Save us!

So when the music’s over
When the music’s over, yeah
When the music’s over
Turn out the lights
Turn out the lights
Turn out the lights

Well, the music is your special friend
Dance on fire as it intends
Music is your only friend
Until the end
Until the end,
Until the end

CI nagging round 3

After new rounds with both Rikshospitalet and Haukeland I have reached a decision. Rikshospitalet asked if I was willing to be operated at Haukeland within 6 – 12 months. For several reasons, I declined to that very tempting offer. Given my situation, I need a solution quick, but Haukeland could not meet my first priority demand. And that is to get the Advanced Bionics Implant (see link in my Blogroll on the right side of this Blog). Apparently Haukeland only offers the Austrian “MedEl” or the Australian “Cochlear”, while Rikshospitalet also has recently started offering Advanced Bionics to their patients.

To me the prospect of (among many other advantages and future possibilities) being able to listen to music with 120 frequency bands as opposed to the “regular” 22 frequency bands the number one reason. Other reasons to decline the offer on going to Haukeland and get the thing done ASAP is the fact that all follow-up afterwards has to happen in Bergen where Haukeland is situated. Being the proud father of  a 7 year old boy, that will present some practical problems during that period of up to one year.

I got in touch with the right people at Rikshospitalet, finally, and I even spoke to them face to face in their office, so now I know who to contact, where to visit them and the communications has been established and a lot of uncertainty has been eliminated.

Now I know a lot more about the future years. I am currently at abouth the 100th person on the list to be operated, and Rikshospitalet operates about 2 patients a week. I will have to be patient (pun intended 🙂  ).

At the time I managed to establish communications witht the right people at Rikshopitalet; I also had found out about a government-funded foundation that has been established to finance people (like myself) who could be working, but needs healthcare-services today rather than later. The Foundation is called “Raskere i jobb” (“Faster back to work”) and hasn’t been fully implementet as of yet. It’s a current ongoing process of setting up rules for the foundation as well as getting the funds released to the various hospitals. I don’t think the money can be used in a foreign country, but maybe??? I will have to investigate more and get back to that.

I asked Rikshospitalet that they considered my name in regards to those extraordinary funds, and that I also be considered for a simultanous bilateral (on both ears at the same time) CI-operation. I will write more about the 1 versus 2 CI-implants at a later time and why I’m willing to do it. They have answered and told me they will get back to me.

I expect to have to fight for getting bilateral CI-implants as the consensus today is to operate only one implant at the time. Bilateral CI-implants has only been given as part of research to understant the difference between unilateral and bilateral CI-implants. I have yet to se any real scientific works about that subject, but as a hearing-aid user, I frequently had to turn off one of mye hearing aids, making me an temporarily unilateral hearing aid user being deaf on the other ear. I KNOW THE DIFFERENCE and I will advocate that difference even through my lawyer at HLF Norway if need be! (she is a lawyer for all hard-of-hearing and near-deaf in Norway)

What is Cochlear Implant? The video answer

Curious about what a Cochlear Implant really is and how it works? Well, here’s the answer!