Second and final pre-screening session tomorrow!

I’m eagerly awaiting for tomorrow to arrive

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

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

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

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

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

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

I will be a better, healthier man!

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

I feel like I know you a little now

Financial crisis for Australian CI-candidates

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

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

Read more about it here…

Deaf for a day

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

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

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

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

And then you can give me you comments

Here’s the link:

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

 

Another story: Deaf for a day – part II

Advanced Bionics test program – AGC (Automatic Gain Control)

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

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

Read his post here

What to think?

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

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

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

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

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

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

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

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

Christmas 2008 – 36 months in waiting

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

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

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

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

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

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

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

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

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

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

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

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

So, to all my readers:

HAPPY NEW YEAR!

Explaining my deafness (even though I hear sounds)

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

deaf (df)

adj.

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

deaf,

adj without usable hearing.

deaf,

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

My challenge of deafness:

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

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

My metaphor goes like this:

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

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

Norwegian Deaf and HoH asks for SMS to emergency services

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

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

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

See informational video on www.deafnet.no

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

Question to my readers:

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

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

 

Thanks to Ann Kristin for making me aware of this.

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

Everyday life – restlessness

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

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

The CI-operation

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

I have patience…

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

Status update IV – early autumn 2008 – part 1 of 5

Hello again, world! Sorry for my absence lately…

It is time to summarize my condition and status concerning the CI-process again. What has happened since last time and what is current approximate time schedule?

It’s now a rough period for me. Things are heavier and I struggle with a lot of different things internally. It began this late summer. Personal life hit a speed bump and for the first time since I “hit the wall” back in 2006 I have regressed somewhat. The positive in this rough patch is that this time I’m more aware of what is happening, and I’ve been strong enough to avoid depression and destructive “artificial solutions”. This is very much thanks to the ongoing psychological therapy I continuously attend. And of course, it has mostly to do with my inner strength and my own reflections and attitude. My therapist constantly reminds me of that. It is about time I remind myself too. I feel like I have finally grown up, at the age of 36! Way to go, I say to myself. Better late than never

Life in general

I have projects to keep me busy. I’m fixing up the apartment these days. Painting doors white (they had this dreadful dirty greenish seventies retro color with dark brown/black frames. Some retro is cool, but these doors were outright depressing). I paint both the frames and the door blades white and give them new brushed steel handles which is much nicer. Maybe it’s new doors of perception I am making? I certainly will perceive them differently after this refurbishment and renewal process.
I also have a long “to do-list” hanging on the refrigerator, so when I have the money for it, I’ll continue on that.
My son is at my place a lot, which is a handful for me, but very rewarding and pleasing. We have a lot of fun. Maybe I’m too much of a weekend-dad, but hey, life is too short to be an uptight authority figure all the time… My son gives my existence a real meaning. A reason to keep fighting and to stay in there.

I just started my own company. Got it registered and already have one big client which is enough at the time. Since I’m a beneficiary of a government support arrangement, I’m only allowed to earn a certain amount extra, which suits me fine. I’m not able to work that much anyway. So this arrangement is perfect at the time being. I’m starting something new, I’m keeping busy, avoiding the couch potato depression and making myself ready for post CI.-surgery.

My familys place in Sweden is a resource for me. I can do all sorts of physical labor things there, at my own pace and only the stuff I enjoy doing. It is a sort of therapy, to do practical things. When I focus at the task at hand, I can forget about the whole world and everything for a time. Things I do is various tasks with our 1959 Fordson Power Major tractor, building a tree hut for the kids (will eventually have three floors and be the hut I dreamed about as a kid   ), maintaining a patch of forest wood as a lumberjack. We’re also currently trying to fix up a garden that had been dormant for 6 years or so. We’re making a rose garden with all sorts of roses. That includes trying to make a whole new lawn on a patch that is about 25 x 75 meters.

I take kayak trips, photograph, do some woodcarving, welding, fix my car and play around in this great workshop garage that we have, fixing boat engines among other things. I play with the idea of building a go-cart for my son with a lawn-mover engine…

Also I’m making plans for the future. The business and my new company is part of that. I am now able to try it out on a small scale, make experiences, and can then make a more qualified decision when I am going back to working properly again. I look forward to that. Get out, meet people, be social, and enjoy my home and free time with good consciousness.

Status update III – part 3 of 3 – Social life and Society

My social life suffers. I decline offers of going out with friends, I withdraw early from family assemblies, isolate myself from communicating with people in such occasions. This depresses me. But I live on the knowledge of that it’s a passing thing, and that one day I will be able to participate as I used to again…

I have placed a lot of hope in the CI-surgery, but must not forget the possibility of that I cannot get the operation due to “factor X”. If that happens, fine, so be it, then I have to learn sign-language and bring my family in on it… No problem with that, it will only take longer… And the rewards lies elsewhere than in being able to hear again, I’m sure.

It is a test of character to wait for Rikshospitalet to get around to operate on me. The last months events has not been much fun, and it drained me of energy and tested my motivation. But I think I have come out on the strong side of it.
I’m nagging and nagging at the best of my abilities. I do not wish to cause a conflict or anything like that. That would only hurt myself. I do what I can do with the situation I have at hand. The rest is up to destiny.

I’m currently waiting for my contribution to the health-debate in Norway’s premier news-paper Aftenposten to be published. I look forward to publish it here on my blog, but will wait until it is published in Aftenposten Aften (the evening issue) first.

I still await answer from the state secretary Roger S. in the Norwegian Treasury Department to my letter about countermeasures that I think should be taken to address the problems I have experienced. I still have a hope he will see himself fit to read and to respond to my short letter…. He is a busy man, I have no doubts.

I am hanging on to myself and my sanity, and thanks to the people I care about the most, I am able to cope. Considering the challenges I face, I feel I’m doing a pretty decent job of it. I pat myself on my back

I will persist, I am patient and I will persevere. I will be stronger and a better person as an outcome of this trial by fire.

I live on love.

Status update III – part 2 of 3 – Challenges of tinnitus

The tinnitus is a relentless as ever. Recently I discovered a way to explain how it sounds. I came to think of the TV test signals with the one-frequency audio sound. That is on about 1000 Hz and is almost the same frequency as my tinnitus. In other words; I have a constant TV-test audio signal blaring in my ears. I have a suspicion that the tinnitus has changed a little in the frequency the last months. The sound is a little higher up on the frequency-scale than I imagine it was 1 year ago… Tinnitus is the sound of my hair cells screaming goodbye forever. May they be revived upon the insertion of the CI-electrode arrays…

Distractions necessary

In order to distract myself from the tinnitus I either has to turn my hearing aids on and endure the “recruitment” and hyperacusia and wear myself out quickly, or engage my brain with tasks like reading, sudoku, various forms of art (I like wood carving, metal work, drawing, writing, photography and the processing of photographs in Adobe Photoshop and alike. Furthermore I like to get my hands dirty working on

alpine and rock plants on my balcony, plants in my living room, various tasks on our small farm in Sweden. Also I enjoy the diversities of the computer world wether it’s playing a strategy game like Command and Conquer, driving rally cars in Colin McRae Dirt, being a hyper modern deadly soldier in Crysis, or simply surfing the Internet, staying in touch with friends and family via email and IM. The computer is a big part of my life, especially since it was and will be part of my professional life and career. Oh, and “house chores” are also a nice distraction from tinnitus

OK, got a little sidetracked, but what I meant to say is this: I have to constantly distract myself with mental activity in order to keep the tinnitus away from the “alert”-consciousness. That in itself is depraving me of the opportunity to really relax and to build up some sort of surplus of mental strength. The results of this never ending battle with “recruitment”, hyperacusia and tinnitus is first of all extreme mental fatigue. It doesn’t take much to wear me down these days.

Consequences of this condition is that it takes more effort to concentrate. The endurance of concentration is shortcoming. Even concentrating on a dialogue is a challenge. To keep my own thoughts in order at the same time I have to concentrate on comprehending the things being said to me is a challenge. At the same time, my short term memory is failing me, probably from the exhaustion of all the other tasks that my brain is occupied with, thus giving me another task I need to concentrate harder on.

Fatigue and effect on body

The extreme fatigue I often experience puts limits to the extent of how much I can pursue my interests. It feels very limiting and prison-like. But I focus on the positive and whatever gives me joy. Having said that, I know that pondering a lot about the condition I am in isn’t necessarily a good thing. However I am such a person that almost never take the easiest way. I tend to analyze and scrutinize the hell out of anything, and then meet it with countermeasures that are carefully considered and self debated. It is a way of dealing with things that goes well for me…

The physical condition is linked to my psychological condition. The stress fatigue is sometimes limiting my capability of getting myself into physical action. At the same time, I have experienced that last year most of my muscle and skeleton-related symptoms (mostly pains and discomfort) has subsided. I have a theory that my body was in a state of stress just as my mentality was (still is) in a state of stress. My body just didn’t respond well to physical exercises. So last winters absence of extreme training has done me well in terms of reducing pains and discomfort in my back and neck especially, and subsequentially in my legs and shoulders (which was the reason I had to stop swimming regularly, last fall). My focus now goes to light physical activity and just having fun while doing it. Pleasure-driven and not self-forcing hard exercise seem to do the trick for me now. I focus a little more on my diet since I no longer burn so many calories.

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 un-sound condition – pre CI era

I want to make this list in order to remind myself what it was like before I got the CI (2007/2008). Maybe I run into problems post-surgery post-sound activation and need a reminder of how I reacted to sounds before the operation(s). It’s a time capsule to myself…

Here’s a similar post I wrote January this year…

These are the sounds that causes great stress, fatigue, even pain and vertigo in me these days… 

• All things mechanical like car engines, especially bigger engines like on buses and trucks.
• to many voices at the same time, especially if a little loud
• the clanking sound of ceramics against ceramics (dinner plates)
• my son at the top of his voice (vertigo)
• my mothers voice when louder
• children voices
• the vibration sounds from my computer, or maybe it’s one of the fans
• inside my car
• elevator music and “muzak” (because it’s too faint for me to grasp, or too noisy otherwise, my brain tries too hard)
• the hiss from the steamer on a cappuccino-machine
• if everything else is quiet, the refrigerator noise is picked up by my HA and that sound wears me down
• the air-condition in office buildings and alike
• stiletto-heels and other hard shoe soles on hard surfaces
• vacuum-cleaner and other domestic appliances
• music    
• any sounds in a room with bad acoustics (naked floors, walls and ceiling echoing sounds)
• any background sound when I’m having a conversation

These are the sounds I can’t hear at all anymore even with hearing aids on

• Birds singing (could hear them faintly as a kid)
• My cat meowing
• My bedside alarm clock
• the fire alarm
• the doorbell
• running water
• rain falling on rooftop
• someone yelling my name from a distance or another room

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!

The cost of a CI-operation?

Can anyone tell me the cost of a CI-operation? Either for one ear, or simultaneously both ears?

I would like to “hear” (pun intended ) from everyone who has knowledge about it…

On a personal note…

My writing is a bit slow these days, I hit a mental bump in the road caused by these budget cuts I was interviewed about…

I’m sleepless in Oslo again, and thought it would be a nice opportunity for letting the world know I’m still here…. And finally browse through some old photos of mine…. Time to air them

Easter holiday is just around the corner, and I intend to spend my time at our Swedish farm by the lake to get my inner strength back. I will hopefully complete a restoration of a sturdy American built Mercury outboard-engine that has been broken and lying around for years.
Also I will take up a new hobby; kayaking! And with that another too long ignored interest of mine will be much more interesting: photography…

I imagine a lot of photo-opportunities just waits there for me to capture… Have plans to take it up again… Hope to show some of them off here on my blog in near future! These two were taken last year with my Nokia cell-phone, imagine what I could do with a proper camera….

And good wishes (and a little jealousy     ) goes to these recently CI-activated blogger’s! Pay them a visit and leave a happy Easter note and let them know we’re CI-happy for them! Some of them has posted their activation videos, check it out!

Sam the brave-blade-Runner, Steve the Ruminator, Michael “ReBuilt” Chorost, Abbie “Contradica”, Jennifer “the butterfly” and Jeff “metalhead”.

 

With this last picture I took last year around Easter time I bid thee good night and I wish all my readers a happy Easter holiday!

Technorati Tags: cost of CI,CI,cochlear implant,sweden,kayaking,photography

Find new subtitles in a whiff!

Open Source Project for finding subtitles

When TV-networks doesn’t caption their popular shows, deaf and people with reduced hearing are discriminated. On the Internet and by the use of home computers, there is a way around this. Most of the activity related to this is by copyright laws and such, regarded as illegal in various countries. I will not explain any of this (or encourage to break any laws), there is plenty of knowledge to find on Google on those subjects. Here’s a good starting point, though…

What I intend to do with this article is to let my readers know about this Open Source Project for making a program where subtitles to movies and TV-series can be found without having to resort to various subtitle search-engines… (here’s the definition of Open Source in case you’re wondering)

There are a lot of people around the world who simply do their own captioning of various shows, by way of subtitle editor software (there are many kinds of such software). Their work are spread via various Internet subtitle-sites, to the enjoyment of people like myself. These subtitle files now have a new way of distribution, thanks to the project I’m writing about here.

The program is called SubDownloader and I have tried it for some time, and I feel more people should know about it…

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

Status update II

Where to begin??? Well, since my last “Status update from Nov. 6th 2007” (where everything is still valid, I won’t repeat everything) some things has changed.

Overall everything is a little bit worse. Tinnitus is loud, perhaps more constant, fatigue is a bit more severe. I get tired a lot faster from a lot less sound. Headaches are frequent.
It’s gotten to the point where I can’t stand the sound of pretty much anything. Even faint fan-noise is uncomfortable. I’m pretty much intolerable to any sound now.
Less than a year ago I was able to listen to music, now I have my hearing aids turned off more than they are on… I rely more and more on my lip-reading skills…

Bilateral CI-operation is still my number one priority. Other than that I continue to take care of my 7 year old son, my fantastic girlfriend (so grateful to have you in my life, honey!!!), family and myself as best as I can. My psychologist has helped me to be able to be comfortable with the fact that there’s not much more I can do. So instead of feeling lost in a black hole, filled with despair, I relax as much as I can, think positive as much as I can and so on. But I have to admit that some times I get the blues and wished that CI-operation could be in the past instead of in the future. But then again, that’s something to look forward to, right?

I am now at about number 60 on the waiting-list for the CI-screening. About 4 months ago I was at the 100th place. If that pace holds, it means about 10 patients a month, which means I could be looking for an appointment at around 6 months from now… Say august… I certainly hope so!!! I really shouldn’t complain, because I’m a lucky guy, really, who live in Norway and these kind of operations are funded by our health-care system… But things can always be better! If not for me, than maybe for the future post-linguistic-deaf person who need CI…

It will be interesting to see how the hospital will respond to my request for doing both ears simultaneously…. It’s not at all standard procedure, I know. It’s just that there’s really no alternative for me, so I might as well get both ears done at the same time…

I think the technology is ripe (Advanced Bionics Harmony with HiRes90K implants that can do 120 frequency bands), the surgery-techniques have developed and are pretty secure. Besides, operating one ear at a time is less cost-efficient than doing both at the same time. 300 000 NOK for one, and 500 000 NOK for two. That’s a whopping 20% saving! Or 100 000 NOK in plain numbers. Not to mention, my recovery will be over once and for all, and I can get back to the workforce sooner.

If the surgeries are done one at a time, I guess it will be almost 3 more years before I’ll get through it for good. In total that could be 6 years (!) of my life dominated by this CI-process…

The long walk…

If I also take into consideration the time I spent dealing with the fact that I slowly lost my hearing, I would have to add a few years to those 6 waiting for CI. I also struggled with work since 2002. I’m up to almost 10 years of my life!!! If everything had been optimized, it could have been as short as 2 maybe 3 years….  Something could have been done a lot better by the health-care system and by the governments…

I hope that I will be able to work and function even with one CI, but I know it will take more strain on me. I know how it is to be deaf on one ear, too (all those times with defect HA, no good battery etc. etc.). And remember, CI is not fixing my hearing to a 100%, but maybe 30% of perfect hearing. Those 30% is certainly a lot more than the 0,5% I have now…. In fact, it’s more than I ever had. All my life I had approximately 20% residue hearing… And if I get more sound from all over the frequency-chart, I will be a very happy normally functioning deaf man!

Other than my deafening, my knees are shot, I’m still waiting to hear from the hospital after the initial response that my request has been recorded and acknowledged… I’m not able to do any physically challenging things like running (forget it), ice or in-line skating, swimming(!) or long walks…  I’ve been gaining kilos all throughout this winter   More of me to love

Last night I finally got through the sleep-registration for detecting if I’m suffering from sleep apnea or just plain snoring… Something I decided needed to be ruled out as cause or bi-factor of my relentless fatigue…. Report is due in the mail sometime soon…

I have to thank all my blog-friends here: Thank you for sharing your experiences with the world, thank you for reading my blog and for encouraging words and support! I salute you all! You are indeed a well of good information!

Beautiful Butterfly Jen, Bionic Woman Abby, Running Crazy Sam, Michael is writing Chorost, Metal in his head Jeff, Great Cochlear Kids, Roberta from Italy (where’s your blog?) and many more!

Technorati Tags: postlinguistic deaf,cochlear implant,deaf