The brand-independent and informational website, Cochlear Implant Online recently posted a comparison chart of the three CI-manufacturers products.
I haven’t studied it, but at first glance it seems appropriate to anybody trying to get an overview of the CI-market. Kudos to the girls running Cochlear Implant Online !
I know I aired some frustration in my last post two days ago about not being able to track any progress (sound wise). This lack of detecting progress is partly my own fault, I haven’t been up to speed about my listening-training. To my defense I have to say I’ve been swamped in everyday life and taking huge life-changing decisions 🙂
Well, today is Sunday, and first I sat down with an episode of Fringe, with my new headphones (product link). Today I think the deep raspy voice of “elderly Walter” came through better. And upon this small revelation, I concentrated more on what I really hear, rather than working on understanding the speech. I think small subtle sounds are breaking through easier than before. I’m getting more usable information! I guess this means my brain is becoming better at sorting out the information feed it’s getting.
Then I put on Spotify, while still wearing my headphones, and started playing a re-mastered version of Nina Simone’s “Live at the Town Hall”. Instantly I found her voice accompanied by the piano a pleasant experience :-) This was a nice CI-moment: Instant enjoyment in music I essentially haven’t heard before (-:
The piano sounds better when played with an accord. The vibrant co-existence of the various tones is also getting closer to becoming like I remember it with my old hearing. Our brain obviously has an ability to combine several tones, thus making the multi-toned sound a unique sound, being bigger than the sum of its parts, so to speak) In short the sound seems to become more natural!
I think not training every day also has its mission: Today I could detect some real progress, and I really needed that experience 🙂
While Nina Simone plays, I decided I will try on my hearing aid for the first time since re-adjusting them to deliver 20 dB less sound than they used to. I think my left ear is craving for stimulus, and the tinnitus in that ear is really really bothersome.
So, before I put in my hearing aid, I want to remember how it’s like without. I have only faint notions of some bass-sounds. With music, if I crank up the volume a bit, I think the software in my processor automatically reduces the sound energy being delivered to my cochlea-based damaged hair cells. Thus, I can enhance the experience of the deepest bass in my left naked ear.
Most importantly: it’s mono.
I tried going binaural a couple of times before, shortly after CI-activation, but the hearing aid was unrealistically, out-of-this-world loud! Hearing aid has now been adjusted to my new reality. I can still understand words being spoken with only my hearing aid, but all other ambient sounds are missing. Nothing. And voices are thick, muddy and muffled. It resembles to mumbling.
Well, show must go on, and I put on the music… Binaural for the first time. I write down the impressions as I listen…
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 :-D 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.
(read on below ;-) )
The long wait is over, and I can now start to look forward to the beginning of the process of becoming a candidate for CI! (sounds like I’m running for the presidency, and in many ways it feels that way too! THIS IS BIG!)
Phase one of the pre-screening, pre-qualification process starts april 28. THIS YEAR! 😛
Then followed by phase 2, which in turn should end up in me being qualified for the procedure AND A NEW CHANCE TO HEAR AGAIN!
I have to tell you, I started crying when I realized what the letter said… It was a good cry!!! I’m so happy it just happened to be a day when my girlfriend was with me. It was a day to remember, indeed! Thank you, my dear, for being with me and sharing that mammoth moment with me!!!
I needed to share this with the world today!
I want to thank everybody who is reading my blog for all the support, comments, insights and INSPIRATION you provide me! Abby, Jennifer, Jeff, Sam, Roberta, Arnt, and many, many others, you know who you are!
And to everybody close to me in my everyday life, thank you for being patient with me and supporting me throug this!
Since 2006 I’ve known this day would come, but I still can’t quite comprehend it. I’m in a mild state of shock, I guess 🙂
When I started this blog in late 2006, I had a feeling it would be a long journey (that’s why I started the blog in the first place). That suspicion became stronger after receiving a letter from the hospital saying that they had an obligation to operate on me before 2010. What I had ahead of me back then, has been more or less as expected. I was prepared for a long haul.
“To exist is to change, to change is to mature, to mature is to go on creating oneself endlessly”. ~Henri Bergson
My every day life has changed a lot. More activity, never a dull moment. I wish the day had more hours :-) I’m not “waiting” for the CI anymore, I let that struggle go this winter, focusing more on my own life and people around me. (Mind you, I still need the CI desperately!) I’ve had enough of trying to understand why Rikshospitalet are not able to operate more than 50% of what the Health ministered ordered last year (see some of my previous posts). I don’t think my engagement into this issue has any meaning or bearing anymore. I’m sad to say this. (I hope I had a little impact, but I have achieved no real results, to my knowledge anyway.)
Waiting, waiting and more waiting. In fact, it has been so much waiting, that life happened during the waiting 🙂
And life is what everything is about, isn’t it?
In retrospect I can with great certainty conclude that I did all the right things back in 2006 and 2007. (You have to read the past posts on this blog in order to know what has happened to me and what I have done :-) )
I have managed to get my life back. I am in a place that is brighter and better, even though it has it’s challenges. I am where I want and need to be.
I am able to cope with life, and take care of my loved ones and myself (somewhat).
But I’m walking a fine line. Experiences from every day life tells me that I have very little to go on. Only thanks to the slow process of acknowledging that I’m by definition deaf, I have come to understand better what the process of loosing one’s hearing does both mentally, physically and socially. And take some precautions in order to preserve myself from exhaustion.
I am deaf, I use hearing aids to take advantage of the very little hearing residue I have left and thus suffer from a rather severe case of “recruitment”. I have tinnitus on both ears, get tired really quickly in general (and then the tinnitus really howls!) and have no chance of keeping a regular job. I need all my strength to take care of my son, my dearest girlfriend and her son, and last but not least, myself.
I had to fight to get my life back. I had to fight with my willpower in order to do all the right things in many areas of my life. I changed a lot in my life. I changed myself in many ways. I changed how my family perceived me. I had to get them to understand me better. And it helped.
In a way I had to try NOT to fight, too! By accepting my fate and my condition (it is by no means a surrender, mind you! :-) ) I have learned that my mind and willpower can work against me as well. Rather than standing tall in the strong wind, risking to break something or get hit by flying debris, it is better to bend over and lie down on the ground and survive. Sometimes it is much better to accept fate and accept conditions, rather than opposing the facts and use a lot of energy trying to get things my way. The consciousness of this “bend before you break” is helping me in many areas of my life.
This blog will remain active at least until I have received my first CI by the end of this year, but it will be less active due to lack of time and energy to keep it updated.
I have learned to suck things up. Take a punch. Even though life is hard when it comes to my health right now, I have so much to be grateful for. I will not allow myself to turn sour or negative. What happens happens. I’ll do my best and want to keep a positive mind about everything. All is good until proven otherwise 😉
I’m going to use this experience to improve my own life in the future. No matter what. There is another day tomorrow!
“If we don’t change, we don’t grow. If we don’t grow, we are not really living.” ~Gail Sheehy
The former health-minister Sylvia Brustad (labour party), ordered Health-South-East (Helse Sør-Øst) to perform 100 CI operations on adults. Despite the warned budget cuts at the Otolaryngology-section at Rikshospitalet last winter, the State Secretary Rigmor Aasrud from the Health and Care Department (HOD) stated in February 2008 that the order for 100 operations remained valid.
For all the adult patients in line for CI examination to decide medical eligibility, waiting to get back to working life, this is a very meager comfort when the summer turns into autumn. Leader for section for hearing, chief medical officer, Marie Bunne, says to Din Hørsel that they only managed 25 operations on adults so far this year. She does not deny that the hospital is in a very difficult situation on the background that the order was for 100 operations. – We do our best, but we will not be able to meet this order, she states.
Last year the Otolaryngology-section carried out 50 new operations on adults. – Given the present situation, we have great challenges exceeding that number, she informs. Her analysis of the situation is that the hospital has been given an order without the needed resources. In order to fulfill the order, the section need an increase in the resources of 33 percent. – We have the countrywide responsibility for operating CI into children. They are given the highest priority, and we are able to operate all the children, Bunne says. The Rikshospitalet has a capacity of 150 operations per year. Included in this figure is also re-surgeries and some number-two implants. Bunne informs that the hospital faces huge challenges in respect of reaching this capacity after the budget cuts earlier. The Otolaryngology-section had no reduction in number of positions, but the capacity for CI-surgeries are directly related to the fact that the hospital are saving the number of beds and operating rooms available, she informs us. This fact disables us from reaching our normal capacity, the chief medical officer states.
The Otolaryngology-section also receives other patients that are prioritized before adult CI-surgeries. – Cancer patients and people with chronic destructive ear infections. The chief medical officer makes a point of the follow up post surgery. In many ways the patients become life-time clients with needs of controls and support when problems arise. The Otolaryngology-section faces an accumulated amount of patients that has received CI and need regular follow-up. – If nothing is done with increasing the budget frames in accordance to this increase in demand, our ability to help new CI-patients will most certainly decrease.
The section leader is not happy about the situation Rikshospitalet faces on the subject of new CI surgeries for adults. – We are forced to make painful medical priorities given the extremely tight budgetary situation, she says. She continuously reports status at the section and what resources the section is in possession of. – The hospital management are aware of the contradictions between resources and the formerly requested results, she states.
The section leader has a few short-term strategies that might improve the situation a little. – By the end of the year we will perform some CI-surgeries as “day-surgeries”, meaning that the patients won’t spend a night at the hospital after the surgery. The knowledge around CI surgeries are now so solid that the medical staff thinks it is about time to run a trial for this “CI day-surgery”. But this will in best case scenario mean that the hospital will be back to “normal” operating capacity (my comment: i.e. 50 surgeries, still only 50% of capacity as ordered by health minister). It is not the lack of will on our part, she continues. The section has very dedicated staff. – We could have been able to reduce the waiting time a little by performing CI surgeries as “projects”, Bunne informs us. In clear text it means that the staff are willing to use their leisure time to perform surgeries. – Such a solution demand that further funding are released, she says. The chief medical officer has herself taken initiative for investigating the possibility if resources from the “faster back to work”-fund can be release to such a project…
…article continues…
The health bureaucracy system has grown into a monster that seemingly no one is able to really control. The health care costs money, we all know that. But now I have cost the society more money in welfare benefits than a surgery on both ears costs, and I still have to wait another year. I lack words in an attempt to describe how pointless and Kafkaesque I think this whole situation is, he says resigned,
He observed the budget cuts at Rikshospitalet last spring with disbelief. Cutbacks on bed-days and OR time has direct effect on the capacity for CI-operations.
– My point in this mess is about the dividend between what we as a nation invest in health and what is being used for welfare benefits. In my case the state bleeds money totally unnecessary. To illustrate the pointlessness of it: this money could have been spent on further increase in CI-surgical capacity, improving after-surgery-support capacity or more cancer treatments at the hospital! It is a vicious circle: the more you save on health, the more money leaks into the welfare and the less BNP we are able to produce. My opinion about this is that it is an example of irresponsible management of the taxpayers money, Ulf says.
Ulf challenges the authorities to think of everybody who waits in health-queues as valuable customers to the hospitals and for the society.
– If our hospitals don’t have capacity to operate, it is about time we allow immediate treatment in other countries. The capacity is there. Economically we save money, no matter what.
article continues…
Ulf is a part time dad for an 8 year old boy.
– It is demanding for me as near deaf to be single dad for an active toddler which is very communicative. For me it developed in an unhealthy direction where I problematized the whole situation and got psychological problems. I “buried” myself in problems and developed insomnia-issues.
– Sleeping disorders are often closely related to one’s general well being, he says. He his grateful for the existence of “Center for hearing and psychological health” at Gaustad in Oslo. This center saved me, he says.
The big dream is to get CI on both ears.
– Next step is that I hope to be able to realize a career and get up someplace where I can make a difference.
I feel I have so much inside me and that I have a good grasp of the world around me. I believe I could make an impact someplace. In order to accomplish such a dream, I am totally dependant of the tool an advanced CI-implant represents, he says.
– In regards to my relationship to my 8 year old son, it is a dream that I have more surplus in order to stimulate him further in the direction of knowledge and activities. I simply hope I can become a better father, he says.
He fears that the dream of simultaneous bilateral CI remains just that; a dream. Today there is only children that automatically has a right to get bilateral CI. For economic reasons most adults only receive unilateral CI and the burden of proof is on him, in order to prove that he will benefit better from two rather than one CI. This provokes the 36-year old.
– If you develop bad eyesight on both eyes, would you be happy to have to document that you need glasses on both eyes? – It’s just plain outrageous, Ulf states.
The IT-expert burdens the welfare services approximately 30.000 euros per year. In the 18 months he has waited the welfare costs are the equivalent of a simultaneous CI surgery on both ears. Today he is defined as deaf.
– With CI it is a well documented chance of me getting back the ability to understand speech and to be able to get back to a regular job, Ulf says. The waiting is long. It doesn’t only sap the welfare funds of money, but it also takes it toll on him as a human.
Ulf has been waiting since January 2007. When Din Hørsel visit him in his apartment, the calendar shows 26. of august 2008. He still has a long wait ahead of him. He visited Rikshospitalet the day before and got word that he is now number 44 waiting for that all-important operation. He has received a guarantee for treatment which expires January 2010.
– If I get the surgery just as the guarantee deadline is up, I have received welfare benefits equivalent of 4 single-ear CI operations! Add into the calculation the lost tax-income for an IT-expert in productivity, costs for psychologist and other health-services, you don’t need to be a social economist to understand that it is horribly expensive for the Norwegian state to have people with highly-sought-for skills beneficiaries of welfare.
– as a society it is an economical catastrophe! We are saving ourselves into the poorhouse, so to speak! [my comment: this statement references to the budget cuts in hospitals throughout Norway] It is utter madness that medically disabled are not treated quickly in order to get us back into work. – On a human level it is a constant state of emergency, he states.
In 2006 Ulf had to cease practice in his professional life. He was then working for Telenor, the worlds fifth largest telecom-company. He had been there almost two years in a Telenor in-house program for disabled persons – Telenor Open Mind. – I worked as a trainee in the top management of the Norwegian Business division. To me it was fantastic and gave me a much needed confirmation that I have skills to offer in the work-life, Ulf tells us. After a long period of adjustments with fewer meetings and eventually days with home office, he suffered the exhaustion syndrome. He had to take the consequences of it and stop working.
– It wasn’t anything wrong with me mentally, it was my declining hearing that made me exhausted, he says.
…to be continued ….
After a continuous rise of mental health throughout 2007 and the beginning of 2008 I think it is good in one aspect to get a setback. Life contains both ups and downs and what defines people is how they deal with both. I did a good job on the upside, and now I want to do an even better job on the downside. I owe it to myself, my son, my family and all my supporters out there.
My psychological therapy started in 2006 after a full breakdown. At first it was about getting myself up on my feet, and then I needed to learn to walk.
This down period I’m into now, told me one thing clearly: I need to learn to walk on my own. I have become somewhat dependant to the psychological therapy, which can not be good in the long run. So the goal for me now is to start detaching from the whole therapy thing. Time to think about throwing away the crutch.
I’m still afraid of the CI-procedure and what will mentally happen to me during the fight for bilateral which I expect will end in a clearly defined NO.
(I know I’m pessimistic, but to me this is the reality I need to face: it is not common procedure these days to get simultaneous bilateral CI in Norway. I don’t want to raise my expectations, because I know the disappointment will be difficult to bear. I’d rather fight the bilateral fight, and then become positively surprised if I manage to argue well with the deciding bodies of the political and medical bureaucracy. So the process of detachment from therapy starts now, with a goal of ending it sometime next year. I don’t go there every week, so I have a good starting point in that manner.
Things will happen this autumn and winter. I think I will save the details about that for later more detailed posts. But I think it will be interesting and maybe a little bit exciting. I can tell you this much: I have been interviewed about the whole “waiting for CI”-thing, and it will be published some time next month, I think… Will of course translate this article from Norwegian and post it here for you all to read. Hope it stirs up some debate, that is for sure!
My fellow CI-blogger, Jennifer activates her re-implanted 1st CI today. I’m so excited for her, and quite optimistic. All signs points to a successful activation today. (I can afford to get my hopes way up for her 😉 ). She really deserves to luck out, since her first attempt was more or less a disaster, and she has had discomfort on that ear for almost TWO years!
Visit her blog and wish her good luck today! Or check out her initial reports if you saw this a little late 🙂
My best wishes for you, Jennifer!!!
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:
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.
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)
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 🙂
Yesterday I discovered this interesting book while shopping on Amazon.com: “Rebuilt” written by Michael Chorost.
It was a weird feeling as I discovered more and more about the man and the book. He went and did exactly what I had in mind 🙂 Writing about Cochlea Implants in himself and what it did to him (mind you, I haven’t read his book yet, I just ordered it).
Well, after the TINY disappointment of having my idea stolen, I just felt great enthusiasm. This is GREAT! And his website is fun to read too, not all is about Cochlea Implants; he ODs on a single pot cookie on the Burning Man festival as well 😉
http://www.michaelchorost.com/
I want to spread the word about the book, I really think the world needs literature about CI and attention around the whole subject… Visit his website!!!
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…
New insight is almost always good. And I need more insight. The world we live in is a not a place of straightforward easily understood algorithms.
It is a place where chaos and change is the rule. The ones who are the most adaptable will keep going somewhere, hopefully forward and up.
I intend to take my life to a new level, despite the fact that it is a hard and lenghty process.
Today I begin this blog, hoping that it will benefit me and others with hearing/deafness issues. It’s a new chapter in my life.
I aim to write well, to inform, to provoke. I aim to create a little more order and understanding in the chaos. For you, the reader, and for myself.
Starting my blog. It’s way to late to start with the heavy stuff tonight as it’s late and I’m off to see my great supportive girlfriend first thing in the morning.
Becoming Deaf in Norway 2007 