Early morning magic mist – Deaf silence


At 5 in the morning the world seems different and so peaceful. First time in my life I didn’t bother to take on my hearing-aids going out of the house. I am accepting my deafness more every day and learning to live with it. Strange occasion to realize it on, but very serene and pure…

I am also thinking about my dear girlfriend who needs me. In fact, that’s what woke me up. It’s good to be missed, not so good to be needed and not being in a position to fullfill that need of a loved one.
Hard to not be able to divide myself into two, but I guess we all feel that wish from time to time…
Nobody said life is fair, I know…

Dear sweetheart, I’m coming to you soon!

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Bengtsfors, Sweden


The famous Dalsland canal goes through Bengtsfors. Many lakes are connected, thus making it possible to travel vast distances in inland Sweden by water. In summertime theres a lot of boattraffic here.

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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

tinnitus2 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

1k hz 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.

Wendy_Painter_Migraine_1993small_en

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.

17052008 – the last b’day before CI?

My son grabbed my mobile and took my picture. I had forgot that Shozu sends them directly to my blog unless I abort, and alas; my sons “journalistic scoop” ended up on my blog 🙂

He did a nice job, so I’ll just leave it as it is with my text here…

Thanks son! I had a nice b’day! Love you!

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The 3Ps… and friends

Thanks to Sam “Blitzer” for a reminder of the key to endurance: “The 3Ps”.

His post on Michael from Minnesota who has trouble with getting approval of CI served as an inspiration to me today.

The 3Ps:

Persistence

Perseverance 

Patience

I want to use this opportunity to thank everyone around me in my life who helps me keeping my spirits up:

My mother, my dearest girlfriend, my beloved son… Thank you all for being in my life, each one of you is a reason for me to stay tough!!!

Inger Anita – who is a driving force in the CI-community in Norway today – and I’m happy and proud to call my friend 🙂 , everybody at Briskeby, Ragna from Telenor (thank you for great support! It means a lot to me Ragna!), Lene from Coachteam – thank you so much for you, Lene!!!, everybody at HLF (who brought this happy news: a new legislation concerning childrens rights to proper speech and hearing training after a CI-operation is in works at Stortinget.)

And to all my social friends whom I haven’t seen in too long time: sorry for not being there lately, I will make it up to you in the future! You know who you are 😉