Feel like I’m walking in Sahara

P4150494

This shot was made with my brand new Olympus 570-UZ camera (it has a built-in panorama function, as you can see). I’m very pleased with it 🙂

What I’m not so pleased with, is that I went to Rikshospitalet today to find out how much longer I have to wait. Last time I asked, in December 2007, I was number 60. Today I was number 57…

So… things are not going very fast there for the time being. How RH is going to operate 100 CI’s this year is a mystery to me. Especially since they managed to shorten the list with about 3 in the first 4 months of 2008.

I was having hopes that maybe something would happen this summer or this fall, but now I think it will be 2009 before I can call myself a bionic man…

Can someone build robots who can do the CI-procedure on an assembly line, please?

The rings of Saturn – simultaneous bilateral CI-surgery?

The Sahara desert, where I was recently, is like a window to the universe. P4150567I was excited to be able to see Saturn with my very own eyes through a telescope.  Fantastic! Just like the picture above.

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

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

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

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

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

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

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

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

As life goes on… A post-mortem salute.

A person I liked extremely well for her incredible kindness and self-sacrificial nature has moved on to the next world…

Ingrid-Line Hernholm, mother of 5, passed away peacefully on April 14th after she had been in coma since suffering a brain hemorrhage on April 1st. She suffered the brain stroke while working for Norwegian Association for Hard of Hearing.

  ingrid-line_rip  

Ingrid-Line, all of us who had the joy of knowing you and your soft gentle voice, mourn your passing. May you rest in peace!

Hvis jeg kunne leve mitt liv om igjen

Jeg ville våge å ta mer feil. 
Jeg ville slappe mer av. Være mer smidig 
Jeg ville være mer enfoldig 
Jeg ville ta færre ting alvorlig 
Jeg ville ta flere sjanser, jeg ville ha flere opplevelser 
Jeg ville  bestige flere tinder og svømme over flere floder 
Jeg ville spise mere is og færre bønner 
Jeg ville kanskje få flere vanskeligheter, men færre innbilte.

Ser du, jeg er en av dem som lever følsomt og sunt. 
Time etter time, dag etter dag 
Å, jeg har hatt mine øyeblikk, og hvis jeg skulle leve om igjen, ville jeg ha flere av  dem.
  Faktisk ville jeg prøve å ikke ha noe annet.  Bare øyeblikk. 
Det ene etter det andre, i stedet for å leve så mange år med tanke på morgendagen. 

Jeg har vært av dem som aldri reiser noe sted uten et termometer, en varmeflaske, 
en regnfrakk og en fallskjerm. 
Hvis jeg skulle leve om igjen så ville jeg reise med mindre bagasje. 

Hvis jeg skulle leve mitt liv om igjen, ville jeg begynne å gå barføtt tidligere om våren,
og fortsette lengre utover høsten. 
Jeg ville danse mer 
Jeg ville unne meg selv flere karusellturer 
Jeg ville plukke flere tusenfryd 

Nadine Starr, 85 år

If I could live my life again

In the next one I would dare to make more mistakes.
I would not try to be so perfect, I would relax more.
I would be sillier than I have been, in fact, I would take very few things seriously.
I would be less hygienic.
I would take more risks, make more trips, contemplate more sunsets, climb more mountains, swim more rivers.
I would go to more places I have never been to,
I would eat more ice creams and less cereals.
I would have more real problems and less imaginary ones.

I have been one of those persons who lived each minute of his life with judgement and in a prolific way; of course I had happy moments.
But if I could go back, I would try to only have good moments.
For if you don’t know, that is what life is made of, only of moments; do not miss the now.

I was one of those who never went anywhere without a thermometer, a bag of hot water, an umbrella and a parachute;
if I could live again, I would travel lighter.

If I would live my life again, I would begin by walking barefoot earlier in spring,
and continue longer into the fall.
I would dance more
I would give myself more joyrides on a carousel
I would pick many more daisies…

   

 

Letter from her colleagues

Kjære sentralstyremedlem, fylkesleder og utvalgsleder i HLF.

Det er med stor sorg at vi må meddele at vår avholdte kollega Ingrid-Line Bruland Hernholm er gått bort. Ingrid-Line ble rammet av et hjerneslag mens hun var på jobb tirsdag 1. april. Ambulanse var raskt på plass, og Ingrid-Line ble brakt til sykehus. Vi hadde et sterkt håp om at hun skulle stå det igjennom. Men mandag 14. april var dessverre håpet ute, og hun sovnet stille inn.

Vi vet at mange satte stor pris på Ingrid-Line. Hun gjorde i mange år en stor innsats som tillitsvalgt i HLF. I fjor begynte hun i HLFs administrasjon og har gjort en strålende jobb i arbeidet overfor våre likemenn. Ingrid-Line var en kollega vi raskt ble glade i. Hun hadde mange venner i alle lag av HLF, og hun vil bli sterkt savnet av oss alle.

Våre tanker går til Ingrid-Lines familie. Vi tenker også på dere som hadde lært Ingrid-Line å kjenne. Mange har mistet en god venn og en avholdt kollega. Vi står sammen i sorgen over tapet av Ingrid-Line.

Dersom du føler du trenger å snakke med oss i forbindelse med Ingrid-Lines bortgang, er du selvsagt velkommen til å ringe.

En god hilsen fra
Geir Lippestad (generalsekretær HLF) ,
og Steinar Antonsen (organisasjonssjef),

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:

Read the rest of this entry »

Minister of Health in Norway guarantees CI-operations for 2008

This is a translated, abridged and reworked version of a Norwegian article found on HLF’s website.

Guarantees CI-operations and screening of infants.

Brustad-webby Norwegian Minister of Health, Sylvia Brustad gurantees that screening of hearing on infants and CI-operations will be carried out, regardless of the cutbacks at Rikshopitalet.

In response to MP Berit Brørby (Labour Party) the Minister of Health guarantees that the operations and screening will be carried out according to the assignments the government has given Rikshospitalet. The fate of the Otolaryngology-department at Rikshospitalet has been uncertain for some time now, and the hospital was ready to implement huge and devastating cuts to the said department in February this year. Now, however, the Norwegian Department for Health and Care and Health South-East (Rikshospitalets superior administrative body) agrees in their demands to the Rikshospitalet.

Priority on Hearing-operations

“I can ensure the representative Berit Brørby that the demands set in the assigments for Rikshopitalet stands from my side. There are also no changes in the function Rikshopitalet has in this area nationwide in regards to operating and following up on children. Health South-East has now also reassured the government that the given assignments will be prioritized independent from the demands for meeting the budget for 2008.”

“The Health department has also repeated a precision to Health South-East that the goal for 100 CI-operations for adults is per definition for new patients”, writes the Minister of Health in her response to representative Brørby.

The Minister has since the summer of 2006 said that the total number of nationwide CI-operations on new adult patients shall be escalated up to the medically and statistically founded annual estimate of 200.

The waiting time for CI-operations for adults is now between three to four years.

The Minister also wrote about the all-important screening process of infants in order to start early with children with suspected hearing damage. (not directly related to the CI-issue, but nevertheless good news for the development of creating a good medical service to all things related to hearing).

My comment:

In short this means that despite the hard times for Rikshospitalet budget-wise, the CI-operations are now guaranteed. The hospital will have to find other ways to save money than to bleed the Otolaryngology-department to near-death… Good news indeed 🙂