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.

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

Finally there – and difficult feelings

Map of Lake Kariba

Right now I’m in Zambia, next to Lake Kariba. Planned this trip a good while ago, among other to keep me busy doing something exciting while I’m waiting for the CI. It is a good strategy for me to have my mind on something else than such a frustrating thing like the CI-waiting….

Just  before I left I received a letter from the hospital calling me to the second appointment. To my great regret, this coincided with my planned trip

But sometimes in life things have to go as planned, and I have asked the hospital for a new appointment. I feel like a traitor.

I have asked and nagged for this CI surgery for so long, and now when the appointment for the second and last examination finally appeared, it appeared before I expected (I asked the hospital a few weeks back when to expect something to happen).

And it also seems I will get problems bringing my girlfriend with me on the second appointment. This is the session where all the information is given, and I have to find a way to get her to come along… She needs that information even more than I do… We’ll have to work something out, I guess… Take care of it when we get there, I guess….

Anyway, the date is now 18.06.09! This is the second and final examination before the actual surgery.

Looking forward to it with both a little fear but mostly with great joy!

Meanwhile I’m having a great time here at the greates man-made dam in all of Afrika, just as planned! I intend to forget my difficult feelings and just absorb all the impressions and enjoy them. I feel I deserve it!

Visit my facebook-profile for updates on my Africa trip  

(just klick my personalized Facebook-banner on the top-left of this blog)

Pinch me! Slap me! Am i Dreaming?

I just got the long awaited letter from the CI-team at Rikshospitalet! YES!

Finally!

(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 love you, my love!

 

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

HAVE A GREAT DAY EVERYBODY!

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…

Patience, understanding and love

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

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

Promising results for tinnitus treatment

With the use of magnets, in so called “repetitive transcranial magnetic stimulation” (rTMS), a trial run has showed promising results in the treatment of tinnitus.

Read more about it here:

http://www.thedeafblog.co.uk/2009/02/magnets_stop_the_nightmare_of.html

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!

A good analogy of HA, unilateral CI and bilateral CI for hearing people

The following words was observed on Facebook (written by my fellow CI-bloggers) this morning.

A CI blog-friend of mine, Valerie, asked for advice on Facebook:

“Our school will have visitors out next week, how do I explain my cochlear implants and deafness without them treating me differently????

Then another CI blog-friend of mine, “the mad dasher”, Sam Spritzer, offered Valerie a very good answer, and I feel compelled to share this with my readers:

“

Sam Spritzer at 1:17am December 5

If I were you, I wouldn’t even worry about them treating you differently. You can tell them that CIs are the 21st century version of HAs, only better. And if you have to use an analogy, CIs to HAs are like color tv to b&w tvs. And a bi-lateral CIer is HDTV to standard color tv. Good luck!”

This was the best analogy I have seen to date, in order to explain hearing technology to hearing people. Also he is right in saying not to worry about being treated differently. It’s easy to say, of course, but there’s truth in it. I can vouch for that… Think about something else. Avoid or avert those “worry” thoughts…

So, I just want to rewrite the analogy a little bit:

Imagine hearing aids are like Black&White TV. Then CI is like color TV.

If unilateral CI is like color TV, then bilateral CI is like HDTV.

In the Queue of my life, no 44 – (Part 5 of 7)

Secretary of State Sundsbø: – The responsibility lies on Health South-East .

Secretary of State, Dagfinn Sundsbø (SP, Centrum Party) in the Department for Health and Care says to Din Hørsel taht the department have been briefed about the situation for CI-surgeries in the region of Health South-East. – There has been concerns for the difficult situation at Rikshospitalet. We’ve been informed that illness among staff has been a large contributor to the currently difficult situation. But we strongly believe Rikshospitalet will be able to turn this around and that they are doing whatever is possible in order to maintain the set number of CI-surgeries for 2008.

He tells us that the development of the situation are closely monitored via follow-up meeting throughout the fall of 2008. – Health South-East has a clear understanding and acceptance of the demand set by the department as for how many surgeries shall be performed this year, he says.

According to the State Secretary, the Rikshospitalet are working at a project for increasing the surgery capacity by means of eliminating the needs for putting CI-patients into beds post-procedurally. – That project has a high priority and is expected to be implemented some time in October. The Otolaryngology department has drafted a plan for treating more patients. The plan is being finalized and is currently being studied by the hospital management, he says.

Sundsbø says that the reason of the unfortunate situation that has unveiled, is caused by a number of unfortunate coincidences. The Otolaryngology section had a heavy burden of illness, and also had trouble recruiting new staff for compensation. Reduced number of beds available to the section will be compensated by the establishment of the “one-day treatment” project, he says to Din Hørsel. – We’ve also been informed that another problem area is the pre-qualifying CI-examination capacity, Sundsbø tells.

108 patients are currently waiting for CI at Rikshospitalet. [my comment: at current rate the 108th patient has to wait more than 2 years]

Decoding sounds from Cochlear Implants

In this informative video you can supposedly get an idea of what kind of work my brain will have to do in order to decode those artificial electronic impulses into meaningful sounds….

I wouldn’t know, if this is accurate or even if it’s true, as I haven’t been implanted yet, but would love to get comments from my CI-blog friends on this posting!

A great what-is-Cochlear-Implant video

Here is a very good informative video from the Med El Cochlear Implant-brand based in Austria.

This video shows very good what a Cochlear Implant actually does for the hearing.
It shows how a Cochlear Implant works in terms of bringing artificial sound to the brain.

Thanks to Berose and her blog on which she made me aware of the existence of this video.

In the Queue of my life, no 44 – (Part 4 of 7)

Rikshospitalets goals for CI operations in 2008 will not be met.

As of September 1st, Rikshospitalet has performed 25 CI operations on adults. – We will not be able to achieve the goal of 100 operations for 2008, Rikshospitalet says in a statement.

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.

Can not reach last year’s capacity

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.

Medical priorities

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.

Staff willing to sacrifice leisure time for shorter CI-queues

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…

In the Queue of my life, no 44 – (Part 3 of 7)

…article continues…

 

Invest in my health

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.

In the Queue of my life, no 44 – (Part 2 of 7)

article continues…

Psychological burden

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.

Has a dream

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.

In the Queue of my life, no 44 – (1 of 7)

Hard of hearing Ulf N. has been in line for eligibility-examination for CI (Cochlea Implant) for 18 months. That is very expensive for the state.

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.

Total cost may become 100.000 euros in welfare benefits

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.

Has something to offer in work-life

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 ….

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…