Oh, what to write? Or not to write?

Did I get it or not? Wait! Don’t cheat by reading down just yet! Follow letter by letter!

I smirk, a little curve on my lips, a little smile, a little bigger smile, a smile, a bigger smile, even bigger smile, huge smile, A BIG GRIN! 

I GOT CI!!!! YES!!!!

I have to tell you, it was such a relief to get that message from the doctor, and the way he did it is a story in itself

We sat down around a table, after the initial handshakes, and even before I got the chance to sit down properly, he just said, “we will offer you CI”. NICE   No tact, and no time to get really nervous or to start wonder what the answer would be…  Well, needless to say, that was a major moment for me! It took two seconds for me to look into his face to look for any sign of a joke or a countersignal, but he was sincere and dead serious. Then the understanding reached my cortex… It was like detonating an emotional nuclear device

My girlfriend sat next to me, and I had to hide in her lap a few moments while I gathered myself to continue the conversation. It was such a relief. Almost 4 years of waiting was finally over in that moment.

As we took up the conversation again, they quickly discovered that I knew everything they were going to say. But, we have to follow protocol, and they needed to say all the necessary things…

I was told all the standard warnings about the procedure being close to the facial and taste-nerves, that not everything might go as planned and that I should be ready for a less than good result etc etc.

Then they wanted to talk about choosing the device, either MED EL, Freedom or AB. I quickly told them that I made my choice long time ago, and they were thrilled and we all had a good laugh. We went through the various features anyway, just to make sure I had all the facts. I have a feeling they don’t usually get patients that know as much as I do about this subject… But, informed as I already am, I had absolutely no doubts in my mind. I’m going for Advanced Bionics, and I also chose the color, Dark Sienna. It’s the device I waited another extra year for. I could have been here with a Freedom or MED EL today, but I have from quite early in my process known that Advanced Bionics was the CI I want. Abby pretty much sums it up for us all here.

Surgery date has not been hammered yet, but it should be around the 22-24th of July. Not idealistic concerning our holiday, but, hey, I’ve been waiting for this for so long, and I’m not waiting a day more unless I have to! Also, my girlfriend wants to be with me during the whole ordeal, and what better time than during our holiday for this?

I’m a very, very, very lucky man!

My thoughts now goes to those who are not so fortunate. I want all of you who read this to join me in a moment of contemplation: Think of all those individuals that live on our planet under less privileged conditions and has no idea that CI even exists! And think of all those who knows about this, but has no government to provide the proper healthcare or who cannot afford a proper health insurance coverage… It’s such a shame the world is so unfair!

I know all too well how it is for you, what you struggle with and I wish something could be could done about this for everyone…

I hereby pledge that I will honor those less fortunate by being the best person and human being I can be, and to advocate for CI for children and late deafened adults.

The rings of Saturn – simultaneous bilateral CI-surgery?

The Sahara desert, where I was recently, is like a window to the universe. I was excited to be able to see Saturn with my very own eyes through a telescope.  Fantastic! Just like the picture above.

The thought just came to me; In space there is no sound. Sound carries through air. No air in space, hence no sound.

Which brings me to this: I’ve been thinking about getting simultaneous bilateral CI-surgery, and how that would be for a few weeks… Living with absolutely no sound…

I’m sure the hospital won’t do it based on my request alone. Do I want to do it if I could? For the sake of my recovery, I want both my ears to be done with. I want to do both surgeries in one session. My only concern would be my son in the silent weeks before sound activation. I would be able to communicate though, I can read his lips pretty decent… It would just be a little slow…

I’m thinking my brain and recovery would benefit from doing both surgeries, both activations, and training both ears equally. Both my ears are very similarly damaged.

I have a feeling the hospital’s policy (for several reasons) is one ear at a time. If that’s the case, I’m pondering wether it’s worth pursuing the prospect of having both ears done simultaneously… (I risk pissing them off, you know…)

For that to be feasible, I would need help from a lawyer, which I think I have through HLF. I would have several arguments, one of them being economical. Other arguments would be the time aspect of going through two single operations that would take 1 – 2 years extra depending on the waiting time… I’m not keen on waiting anymore…

Anyone have opinions on simultaneous bilateral CI-surgeries or experienced simultaneous CI-surgery? I’d be happy to hear from you….

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

Captioning videos @ Overstream.net!

One of my CI-blogfriends, Abbie (Chronicles of a bionic woman), recently created this captioned CI-activation-video! For all of us who can’t understand spoken words very well, this is a gift!
Thank you Abbie, for letting us really participate in your experience. I learned a lot just from understanding what your audie says!!!

I saw this video uncaptioned, and didn’t get much from it, but that changed with the captioning!!!
For all of you who can hear, watch this, and remember that the ear Abbie is hearing on this video used to be deaf!!

I’d also like to give attention to the online-site that make captioning possible:

Overstream.net KUDOS!!!!

All you videobloggers and video-posting maniacs out there: please caption your videos if there are dialogue or even sign-language!
Make the world a richer place for all those who cannot hear well (or read sign-language)!

Technorati Tags: activation,ci,cochlear implant,captioning,captions,bionic,cyborg,hearing

Sudoku vs. cognition

What in the world could the term Cognition have to do with Sudoku? Well, let me explain…

For a Sudoku to be solved, you need to be able to learn, reason and remember numbers. Most of which has to do with the term “cognition” (click the word above for a precise terminology).

I learned about my own cognitive condition from doing a lot of Sudoku the past years. For instance I learned that having poor sleeping over longer periods made my Sudoku solving ability very poor. Also if I was plainly tired from a long day, my Sudoku skills suffered. Other things that made Sudoku hard for me to solve was the (for the time being) ever present fatigue, tinnitus and level of blood sugar.

After I became quite skilled in Sudoku, I recognized variations in my own mental performance. And soon it became apparent to me that my mental performance also followed certain patterns. And this is the interesting part that made me want to share this with my readers.

Sudoku taught me when I was tired in a time where I was always tired, if that makes sense??? It’s the fatigue-thing I’m talking about… How did THAT help me? Well, there was variations of tiredness over time. Some days I just couldn’t remember from 5 minutes earlier, or I had trouble concentrating on the task at hand (I have a special routine for solving them). And since I was all about getting better, noticing the good or bad days for Sudoku gave me an external method of measurement of my mental state in a period where my own built-in sensor needed calibration, so to speak

Sudoku taught me how to trust and USE my own sense of tiredness again. The feeling of tiredness is a signal to ourselves to slow down, to take a break, to eat and drink, to sleep or take a nap and so on…

Yes, I was truly f***ed up, I had lost the ability to heed the signals my own body and mind gave me… Sudoku helped me almost in a scientific way to regain that.

I continue to do Sudoku, allthough not as much as I used to, but it is still a fine tool for measuring my own cognitive skills. And I can recommend Sudoku to everyone as mental training. It has been and continues to be useful to me, not only as a tool for mental measurement but also as hobby that trains my cognitive skills somewhat… And we all could do with better brains, right?

A Christmas wishlist for any CI-candidate

All these books would be nice to sift through….

Also I found that a medical journal published 6 times a year by Lippincott Williams & Wilkins, called “Ear and Hearing”. They have plenty of very interesting online articles available to subscribers, abridged if youre a guest…

Same publishing house offers The Laryngoscope.

All this is a bit expensive for me at the moment, but I will keep searching….

If any of my readers have tips for websites or publications concerning CI, please let me know, I will collect and publish everything I come across…
For the time being I will focus on what interests me spesifically;

• simultaneous bilateral vs unilateral CI,
• CI in adults and
• all research data and latest scientific breakthroughs…

Technorati Koder: christmas,wishlist,CI-candidate,publications,magazines,cochlear implant,laryngoscope,ear and hearing

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

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)

CI-nagging round 2 (actually it’s more like round 5 or 6)

OK, the health care bureaucracy in Norway is fucked up in many ways. I have to live with that, and I have to deal with it.

SO, the premier hospital in Norway, Rikshospitalet, did not reply for my 5 or 6 first e-mails. Now finally I got a name and an e-mail-address that I can “hammer”. Maybe I will get some more info soon. Nevertheless Rikshospitalet have many who needs CI-operations on their waiting list. This results in a long waiting time, up to 3 years. This is a seriously long time for me at the moment. The perspective is unbearable. I don’t even want to start thinking about what I have to fight in order to get the second CI-operation.

Then I talked to a lawyer at HLF who works with these issues in order to put pressure on the funding  governments. She informed me that another hospital in Norway have a waiting time of “only” one year. This is Haukeland in Bergen.

So, I’m thinking, well, I have more than enough time, so why not give it a try, see what comes out of it.

The procedure then is that I have to go back to my personal physician, ask for a new requisition to a specialist at a hospital where I live (AHUS), and then get yet another requisition at AHUS to the CI-operation itself at Haukeland Hospital. Then I have to wait for Haukeland to reply to me and so forth.

Sidenote: All this Kafka-like bureaucratic back and forth drives me nuts! All that wasted manpower, resources and time! Jeez! Rikshospitalet has a HUGE file with my name on since I’ve been a patient there since childhood. They KNOW how bad my hearing is, they KNOW the pretext of my condition. Yet the system needs all this paperwork, these other specialist to say that, yes, your condition qualifies for a CI-operation etc. etc. This is one aspect of what is wrong with the Norwegian health care system. It is way too bureaucratic and complex. It has become a “bureaucracy-for-bureaucracy’s-sake-institution”.

AHUS (Akershus Universitets Sykehus) managed to loose my first requisition to the specialist in order to get the first requisition to Rikshospitalet. After my nagging they “found it at the bottom of the pile of requisition applications”.

AHUS then managed to loose my second requisition to the specialist in order to get a new requisition to Haukeland. I had to get my personal physician to re-send it. (and they always use a messenger who deliver it personally to the staff at the right department at AHUS!!!)

(why do they need to do another examination of me to give me an exact replica of the first requisition only to another hospital???)

Haukeland hospital has answered every one of my e-mails and in that aspect they appeal to me. But for me ultimately the technology and the medical skills is the most important. I don’t want my hearing to be fucked with by a newbie. It’s too important to me to be blatant about who does it and what CI-device I end up with….

I have fears that me playing on two horses; namely Rikshospitalet and Haukeland might give me troubles later on. In Norway we have a right to choose hospital, but I don’t know if they are collaborating the waiting list at the two hospitals….. And what would happen if….. and so on… I can go mad going down that road…..

A long posting… sorry about that, but this one was long overdue, I had a lot of catching up to do concerning this aspect of my life…..

I’ll stop now

Hard to understand?

I just read some of my former posts…  And one thing suddenly occurred to me as a difficult thing to understand; the fact that I get tired of what could be best described as faint noises… How is that possible when I’m so hard of hearing and next to deaf?

Well, the explanation is that the hearing aids I use are tuned to it’s maximum, perhaps a little over the top too…. For me a tractor working on a field a couple of hundred meters away from where I sit is audible (and annoying). The refrigerator has been mentioned. I pull out my hearing aids and listen to the tinnitus instead, it is less tiring actually.
All the faint sounds represent sound pollution to me. Since I need to rest (my hearing) when I’m not communicating verbally or when I have the (nowadays) occasional music listening experience, those faint sounds becomes obsolete sounds. That is by definition noise, to me.

My brain constantly seeks better understanding of the sounds it receives, and thus drains my resources constantly. That is how it must be. But when almost all the hearing has gone, the brains tries to compensate by working harder. My eyes (aka curiosity) seek out visual confirmation of the audio-signals the brain receives.

The hearing aids are designed to enhance ANY sound it receives. It has no way of making a distinction between noise and needed sounds. THIS fact causes overload on my hearing organ and my brain, since this is a constant condition.

The brain is the most fascinating organ in our body, as it is able to compensate and change during our lifetime. Loss of hearing causes other senses to kick in stronger, and when sound is still present, the brain will obviously continue to make the most of it.

The problem presents itself when I, as a human being, are met, and lives with demands that is contradictory to the auditory loss. Add the strains of everyday life in terms of stress, work, rush hours, information overload etc etc, and you have the recipe for a brain blackout if one is not aware of the danger of it.

Plus, I have to work extra hard to communicate with everyone around me. In that I have no choice. It is not an option to isolate myself from the real world where people I love and care for are. If I do that I am certain that depression and darker days will follow. That makes things worse.

Yogatrial

Learning a little yoga-exercises these days. They are very interesting in the way they affect me. I am using several exercises, and one is for the ears. The fun thing is that my ears feel warm after the exercise! I will continue for a few weeks in order to give it time to “work”. I have faith that the yoga-exercises actually could benefit my general health and stamina-situation…

I have hopes it works against the tinnitus, and that some of the other exercises will help me regain more strength that is so desperately needed…

Again I have to give my heartfelt thanks to my great girlfriend for sharing her knowledge in the eastern way of life….   Thanks honey!!!!

Tiny update

I’m doing good now. The tinnitus is not troubling me. I have been able to “think” it away. It seems like every time I think: “ah, nice that the tinnitus isn’t bothering me…” it reappears….  That’s something to think about…  It’s all in my head!

Sleep has never been better. Even when changing time I go to bed, falling asleep seems easy these days, and I sleep generally more than I have in many years… Hope this is a sign of healing of some sort…

As for my hearing…. It’s worse than ever, of course….  My awareness is hightened, and I notice more and more arenas where I can tell my hearing is significantly weaker compared to earlier experiences….  I guess it’s both good and bad. Good to be aware, bad that hearing is fading noticeably….  Makes me feel stress about the whole CI-process with the hospital… Still no response to my 3 requests for a response…. Right now ANY response would be appreciated….

So….  My plan for the summer is to take things easy, be with my great girlfriend, my son and my family.

Hope you all will have a great summer… (it’s raining and raining here in Norway, but it doesn’t bothers me, I kinda like it…)

Tinnitus, fatigue and mentality

Schorching hot days was bliss, and an experience. Up here in the northernmost part of Europe we’re not used to temperatures up to 30 – 35 centigrades. Fatigue becomes more prone, and in that persepective I learned that being more tired makes it easier to fall asleep even though the tinnitus is having a field day in my hearing-organs…

So it is a paradox; in order to feel like I sleep relatively well, I have to be really tired before going to bed. If I’m not really tired, well, then I can expect a rough night. So in the end it all becomes even… A steady state of tiredness. And that’s nmothing new to me. I’ve been really tired and never really rested and fresh the last 5 to 10 years…

This represents a challenge in itself. How do I know when my batteries are getting charged in the long term? I know being tired so well, that it has become my normal state.

I’ve spent the last months really feeling. Feeling about the tiredness, how a good night affects me, how everything affects me, even the food I eat. I would think I need to do more of that feeling in the months to come. Get to know myself.

Good thing is that the summer is here, my super girlfriend is about to complete her exams, and I can take her home and have her closer on a permanent basis. Being in a long-distance relationship has also been straining me at times, but not near as much as having a girlfriend like mine have given me more power and strenght to still endure….

This note will probably be followd by another note in july sometime if I don’t find time to file another report while being on the road… I’m going on vacation coming this monday, and wish all my readers a great summer until next time!!!  Keep reading, it encourages me!

Change of mindset

After the conclusion was reached, and the first step taken, about taking care of myself and my son in the first hand. I haven’t seen big changes in my life in general, things still go an as they have the last few years, and I don’t feel like I’m in a void or anthing like that…

But, my mindset probably has changed, in the way that I think about how to spend my days.  I will be more around my friends and family, when I feel I have the energy for it… Instead of using my much needed energy to run around in pointless meetings in the bureaucratic system.

I will definitely write more. Maybe it all will result in a book? Who knows I will seek out more of my creative ways that I know I have in me, that have never been let out very much before…

I will spend more time outdoor, especially when the weather shows its nice side. And speaking of outdoor-life, I will be a lot at our new Swedish countryside mini-farm, tending the place. Swimming in the lake, fishing, boating, walking, driving around in the old farm-tractor plowing old fields, turning them into grass-fields and a nice garden.

And in all this, my hope is that I get more energy for myself, my son and my beautiful girlfriend. Life is about the people in my life. I need to be able to care for them.

Let’s hope the hospital answers my nagging soon…

Hard-to-make-conclusion

It has taken me a long time, and a lot of thinking to come to this conclusion: I can no longer work.

The consequence of working for me is that I keep draining myself for the strenght I really need to take care of myself and my beloved son (aged 7). This is the situation right now.

I don’t like it. I’m scared. But I have to face it. I need to gather strenght for the future process of rehabilitating after the CI-operation, and I need to preserve my strenght as I endure the process of slowly loosing what’s left of my hearing.

Today I took the step. I asked my physician to help me apply for a rehabilitation-program in the  NAV-system (Norwegian Wellfare System). This will take me out of the work-training-programme and into a more long-term programme aimed to get me back to work after the CI-operation.

Hopefully my new strategy will pay off in the long term. Gods know that I have really tried hard, and at the best of my abilities to get into/stay in a job-situation.

I’m too tired to write more today…..

The process of understanding speech with lipreading

A while back I underwent a test called the IOWA-test at Briskeby. Briskeby is a state-funded research and education center for deaf and hard of hearing. The IOWA-test shows to what extent someone utilizes the technique of lipreading in the process of understanding verbal communication. I scored 50% (with no audio). I will post that and other documentations here as soon as I get around to prep them for this blog…What dawned on me today is that I use the same method for compensating my lack of hearing with the lipreading as I do with the audio that I’m capable of capturing.

To explain it I need to use the analogy of a computer that understand speech:

When I meet someone new, I immediately start recording their speech. Then I decode their speech: The intonation, the accent, the dialect, the volume, the size of their voice, the frequencies and more (than I’m aware of myself I’m sure).

This is a constant process in my interaction with people.

The recordings are put into a database (ie. my own memory). As someone speaks, I pick up similar pieces from the database to compare what I just heard with what my database has recorded. If it’s a probable match, I assume I perceived it correctly.

If it’s an unknown word of phrase, I record and save in my database after making sure I understood correctly.

If I’m mistaken, I correct my database, or add a new recording for the purpose of being able to compare that word spoken in that particular manner at a later time.

Ok, that’s the basics of the guesswork I do when audio isn’t 100% (which is almost never).

With the lipreading it’s a little simpler, but the process is the same. I record a video of facial expressions along with lip, jaw and tongue postions/movements.

When someone I know well, suddenly talks a different language, I always get huge problems in guessing what they say. It usually takes several repetitions and an additional explanation or translation before I’m able to put together all the segments of the word that I did not perceive.

The better I get to know people and the better they get to know how they can facilitate their speech for me, the better the rate of guessing correct by using pieces from my database.

For someone to facilitate speech for me means that they take a pause if something noisy comes by, like a streetcar or a bus. It means that they don’t cover their mouth with a cup of coffee or a glass or their hand etc. etc.

Nagging pays off

Last week I received the first letter from Rikshospitalet. They stated that I was eligible for a CI-operation, and that they guarantee that I get the operation before january 2010. Whee! NOT…

Well, actually it’s good news. One small step has been made.

Now I need to figure how to speed things up, I don’t plan to wait 3 years for my hearing to get back. First I’ll check rules for applying other hospitals in Norway, I hear Haukeland in Bergen has shorter waiting lists… Also I want to check Swedish, Danish and English hospitals…. But special rules apply for surgeries outside Norway. I’m probably not eligible for that unless Rikshospitalet exceed their own guarantee about operating on me before 2010. But will exhaust and check out all possibilities…

 In the meantime I’m trying hard to figure out how to live a ”balanced” life. Maybe I’m trying too hard… Damn, I’m tired sometimes….

CI-nagging @ hospital Round 1

After seeing a specialist and receiving a very clear confirmation that I am a candidate for a CI-evaluation/operation, a letter of recommendation was sent from that specialist to Rikshospitalet on January 23rd 2007.

To this day Rikshospitalet still has failed to even acknowledge the receival of that letter of recommendation. I have not gotten any response whatsoever so far…

This evening I sent a short e-mail asking for a response and an explanation as to why it takes so long…

I have not been looking forward to being forced to struggle for CI (and a better and more productive life), but now I’ve picked up the glove and I’m ready… (I’m prepared, I have means and a motive)

A little upset…. (my political manifest?)

My liaison in NAV made a remark in an e-mail today which upset me….

To take first things first:
1. Most things I do that involves verbal communication (which is pretty much everything) takes great effort, and when I get tired I need a lot of time to recuperate.
2. I have been able to make my liaison at NAV SYA (he has a hearing disability himself and seems able to symphatize in my position) understand that I need to start with one day work per week.
3. I have also been able to make my new “employer” HLF understand the same thing.
So far, so good…

This is the remark made by my NAV liaison: About one day per week is too little, and it is difficult to defend such small working percentage “to the system”. He should work 2-3 days per week. Otherwise it will be too expensive…

What the? Too expensive???? Oh, so you rather want me to lie down and do absolutely NO work? Will that be cheaper for society? THINK AGAIN!

Damned system. What does the system know about my physical and psychic condition?

My ramblings aside, I need to express what I deem is the core of the problem/solution in my case:

The politicians in Norway has stated that they are concerned about too many people live on wellfare even though they could do a little work! More people should work a little they say. Well, here I am!

In response to the Minister of labour and social inclusion in Norway; Bjarne Haakon Hansen’s often repeated statements about his concerns about people who could work a little (but who doesn’t):

and in support to Minister of Health and Care Services in Norway; Sylvia Brustad’s recognition that CI-operations are an important and an socio-economically feasible procedure that will save the Norwegian tax-payers a lot of money by getting people like me fast back to working condition.

CI-OPERATIONS is an INVESTMENT in HUMAN CAPITAL! The longer the wait for CI, the bigger the long term cost for society!
The wait for CI-operation cost money in itself. Also; the longer the wait, the longer the rehabilitation period equals even bigger costs.
Some cases take so long time that people give up, they enter a state of hopelessness they never recover from, even if they one day finally receive a CI-operation…

My political manifest:

Norway needs my skills and my work capacity! I have 10 years of IT-experience, and a lot of IT-certificates to show for. Norway SCREAMS for more IT-skilled workers today! My working capability WILL improve. Just give me time and space to adjust and find my foothold and balance in life, will you???

AND GIVE ME MY CI-OPERATION TODAY! That way I can exercise my communications skills without feeling like I commit a slow suicide. That way I can heal, recuperate and get back to normal worklife a lot faster!

Instead of being a liability to my society, I can (and want to) become an asset! But I need help, and I need it faster!!!!!! Not tomorrow! TODAY!

I want to work!
I want to be useful!
I want to remain in the workforce and use my brain.
I want to stay in there and fight for my life!
I want to contribute to the best of my abilities!

I DO NOT want to destroy my remaining health in the process!
I DO NOT want my son to have a father who is too tired to nurture him properly!
(I ABSOLUTELY REFUSE to neglect my son! You hear me???) 
I DO NOT want a life where I merely struggle to survive from day to day.
I DO NOT want to be subject to suspicions that I am lazy or exploiting the wellfare system. (I am part of the solution and I’m dedicated to it, are YOU?)

I was hoping to get a good nights sleep, but the de-humanizing system that results in remarks and directions like the one I described at the beginning of this posting made that a long shot… It aggravates the hell out of me, and this posting is the only way I know of to get it off my chest and into the worlds public consciousness…. Where it belongs….

And then maybe I can find sleep and rest, in order to be able to function yet another day…

Brief News

The process with NAV SYA has resulted in an agreement with HLF (Hørselshemmedes Landsforening – Organization for hard of hearing in Norway). I will begin working there shortly.

This is happy news, and I feel that given my condition, I will be able to stand in that jobb, since they better understand what I’m going through…