Goodbye old life – Hello new life! (?)

Wow… I’m still here!

neuronsMore than 4 long years after the neurons (picture on the left) in my brain formed the thought of getting a Cochlear Implant for the first time, I’m finally here. At the doorstep of a new reality. A new perception of the world of sounds promising improved social interaction and perhaps even music.

Back in 2005 my son had his first day at school, Microsoft’s Windows Vista was still to be officially launched, Pope John Paul II had just died and Pope Benedict XVI became his successor, the superjumbo Airbus A380 had it’s maiden flight from Toulouse, the Kuwaiti women were granted the right to vote (on my birthday), Lance Armstrong wins his 7th (and so far the last) Tour de France and the hurricane Katrina wreaks havoc in the US city of New Orleans and surrounding areas.

Now, in 2009, my son is in 4th grade (!), has a new set of front teeth and has grown almost 50 cm, Windows 7 is just around the corner, Barack Obama is the new US President, Lance Armstrong made a comeback to Tour de France and the world is desperately trying to shake off the effects of the worst global financial recession since 1930.

This time of waiting for CI has been hard and exhausting. I want to direct a very criticizing finger at Norwegian health authorities (forget about party-lines, this goes for all politicians and all policymakers!):

norsk_flagg_stang It is de-motivating, devastating and beyond understanding to have to wait 4 years for a life-improving sense enhancing procedure such as the Cochlear Implant! It is counter effective, both in terms of pure financials for the society and in human capital. Instead of returning quickly to a productive life and continuing as a healthy member of the taxpayers force, individuals such as myself are forced into years of life suspending professional and personal social life hibernation. It is such a place where the personal price is high, and the society’s costs are growing into grotesque proportions!

I have a 3 point petition:

1. Sense improving technology such as the Cochlear Implants is the future, embrace it! Build and strengthen national CI competence right now!

2. Stop being afraid it costs too much! In the end it costs much more to stall, let alone not doing it! It’s plain common sense! It is a CHEAP investment into human capital! Build for the future!

3. Grant all who might benefit from it, bilateral CI! In return I can promise you happier and much more productive deaf citizens of Norway!

I can’t say that the 4 years that has passed since my brain created the first thoughts about putting a Cochlear Implant into my head has been boring, far from it. They have been eventful!

research-sanity-1 Related to my condition; I went through 2 years of psychological therapy, countless visits at the hospital asking about when I could get the operation done (nagging), I said goodbye to my beloved music, I went through many life changing decisions, all in order to survive and maintain a life in order to be able to father my son the best I could and to remain sane, healthy and alive.

Yes, it’s been the fight of my lifetime so far! I had many small and big defeats, such as the day I admitted to myself that I was no longer fit for the A4 working life, or when I had to accept that I had to wait 4 years for that life-changing all-important cochlear implant…

But it’s a lot nicer to count my victories 🙂 I remained on my feet, I did not succumb to self-pity, I have been a somewhat decent father to my beloved son, I actively worked my brain from a medium depression state into a better functioning state with a more realistic view of myself, the world around me and it’s expectations from me. I made my life better, in spite of the borderline progressive deafness and it’s challenges. I lived my life to the maximum of my capabilities. I started my own company (in order for me to be able to work as much as I could/can). I got closer to my family and I found a very promising life-partner! I did not waste my time :-)  Sometimes challenges bring out the best in you.

At last, but not least; this blog has been my salvation, brainchild, hope and joy. I started ci4me2007 in the last weeks of 2006. I had such high hopes for it to become the year that I would finally get my CI. Now, 157 (counting this one) posts later, with 45.000 accumulated views (that means 45.000 opened pages), it’s almost nostalgic to look back. I wonder what will become of this blog now.

doorsA new chapter in my life begins the day after tomorrow. I owe the ones that are next in line for CI, wherever they might be, to be able to access my experiences both good and bad, just as I have been able to read about Michael Chorost (read his book!), Jennifer, Abbie, Sam, Jeff, and many, many others, and more recently; Kate, Movale, CIborg.

It’s time to walk through that door of perception, and shape my new world, and my life along with it. Wish me luck!

See you on the other side! 😀

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 ;-)  )

happy

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!

all_you_need_is_love_by 

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!

Status update IV – early autumn 2008 – epilogue

You people must become fed up with all these “Status update”-posts, no?
After this rather long and 5-way split Status update, I realized there are some other health issues that needed addressing.

It also serves as a reminder to myself that the purpose of this blog is mainly to be like a medical journal (for myself and others who might need the info).

Status of Tinnitus: rather unchanged.

It is still sounding the same as it did when I started being bothered by it, with a rather constant “UUYYUUUUYYYUUUUYYYUUUUUYYYUUUYYYUU….” around 1 to 1,5 KHz. It’s worst on the right ear, and it varies in intensity (or strength/volume) according to how tired I am. I don’t know if that means that the tinnitus is worse because it’s actually louder or if it’s because my tiredness makes my brain more susceptible. It is a matter of perception I think…

General health, back to regular training

I have started training again, after a whole year without any training regime whatsoever. The body seems to respond well to the exercise as opposed to one year ago when any exercise gave me pain and aches in both bones and muscles. My goal is that my little overweight shall become less during this winter instead of becoming more as it usually does during the dark season.
The chronic pain in my knees is fading. This is a little miracle for me, because it was troublesome to just take the stairs at times. I thought the chronic pains was a one-way ticket into some sketchy knee-surgery-history. I’m glad I was wrong 🙂
I have become conscious about the fact that I can not and should not run anymore in order to save the knees from more wear. So my focus has been switched to alternatives like kayaking, biking and swimming. And that is all right by me.

High permanent stress levels leads to immune system deficiency?

I have a theory that the level of stress in me the latter years made my immune system turn on my own body as a warning mechanism (the signal being: slow down!). I don’t know if this makes any sense, but what if the immune system reacted so strong to the state I was in that it actually attacked parts of me it was not supposed to attack? I know, it’s a wild theory, so if anyone has any views on this I would appreciate any comment. I googled on the term “autoimmunity”, but those articles where mainly oriented toward causes for arthritis and diabetes. I didn’t go deep though…

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.

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 😉

Just say yes to sunshine

Today I want to spread some sunshine.

This picture shows the morning sun entering the valley of Lærdal in one of the deepest parts of the worlds longest fiord; the fiord of Sogne (Sognefjorden). The fiord goes almost halfway into Norway.

This is my view from the window as I write, and this is the view I enjoy every day I’m visiting my girlfriend. It’s uplifting, allright 🙂

Lately I realized that I have been indulging myself in self-pity too much for my own taste. It’s time to turn the other cheek and greet the spring and summer with a new fresh, happy spirit. Bad news on the CI-front will eventually have to be replaced with good news again.

So, my dear readers, please enjoy the view of Norwegian mountains with rapidly melting snow on the tops. Today I will walk in the bright sunshine, take pictures like crazy, and if they’re good, possibly share them here with y’all…

Have a nice sunny day!

Quote of the day:
There is no greater impotence in all the world like knowing you are right and that the wave of the world is wrong, yet the wave crashes upon you. – Norman Mailer

The cost of a CI-operation?

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

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

On a personal note…

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

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

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

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

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

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

 

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

Status update II

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

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

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

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

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

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

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

ASCII-Man1 The long walk…

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

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

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

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

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

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

What I hear (or what’s left)

It would be a good idea for me to put down some kind of status as to how my hearing is these days (as a baseline):

Without my hearing aids I can barely hear:

  • My son singing at certain notes at the top of his voice (gives me echo-effect on that frequency until I hear new sounds)
  • A tractor right outside my windows (5 meters away)
  • Only the bass from music

keep-silence With hearing aids in quiet surroundings I hear:

  • Well enough to understand spoken words with the aid of lipreading (better if my head is clear and rested)
  • When really silent: a noisy refrigerator, traffic noise outside the building, an airplane or helicopter in the sky. I get a “white noise” sound from running water.
  • My external hard-drive – the spinning disks vibrate into the wooden table.
  • Other peoples voices in the room, but cannot understand without lipreading.
  • Familiar voices on the mobile for short conversations and messages. I most often have to repeat and ask for confirmation. It’s border-line.
  • Other peoples footsteps in same building, maybe a slamming door.
  • Static noise from electrical FM-devices like my Phonak Smartlink

With hearing aids in a “quiet cafe” surrounding I can hear:

  • Spoken word if not more than 1 meter away, but I have to concentrate really hard
  • Other people speaking, but cannot make out what is said.
  • Music, but only in the form of unrecognised sounds…

 With hearing aids in noisy surroundings I hear:1728

  • All sounds are garbled and mixed in an impossible soup of noise
  • I can extract a voice from 50 cm away if noise isn’t too bad, and I know the subject and the person (if I’m used to lipread whomever, it’s a better chance of understanding)
  • Cars and trucks travelling at high speed close by me
  • Dogs barking loud

When waching a movie with sound directly into my hearing aids I am dependant on captioning. Environmental sounds like running water (splashing), wind blowing, birds chirping etc are lost completely. Spoken words are not understood at all without captioning (dialogue is most often switching and camera angles changing too fast for lip-reading to be effective enough).

Music has lost it’s magic during the last few years. I can sense the rythm, and hear most of the bass and drums. Percussion is completely gone. Perception of vocals depends on type of music and what tone the voice has. Guitar has disappeared slowly last few years, now it’s not “swinging” at all anymore…

I wrote down this, because I want to use it to compare later when I get the CI (my personal baseline).

Cold on cold winters day

Still suffering from that common cold I reported on a few days back, I feel it takes forever to recover. I’m an impatient guy who hates to be slowed down. But I guess the years have given me at least a little more of that precious patience. When I grew up i was prone to get ear-infections and had more than my fair share of common cold and alike.
This time it has been a while since last round so I notice things more vividly. I am even more baffled by the impact the clogged sinuses and all other symptoms have on my hearing. Talking in a controlled environment is harder, thus giving me even more strain by communicating. Being in noisy environment communicating is virtually impossible.

I have become quite obsessed these last years about dressing myself properly to avoid getting cooled down and thus more vulnerable to catch a cold os something similar. I make sure to stay warm on feet, head and neck as good as I can. I can sense when I get bugs in my body, and mostly I feel I’m able to beat it down before I get sick. It takes a few hours sleep and a lot of heated beverage like milk with honey in it 🙂

Sometimes I wonder if I’m developing paranoia for illness, or if I’m a hypochondric…

Speaking of hypochondria, I remember when I was young I was often accused of being hypochondric, because I complained a lot. In retrospect I can understand that, and at the same time, I understand my own behaviour. What I didn’t understand was how I was affected when I had a cold. And being young and utterly impatient the feeling of increased isolation and deafness wasn’t easy to deal with.
Over the years I have slowly come to terms with all the issues concerning my state of hearing, and I have also developed this “smartness” in avoiding getting sick. I’m quicker to sense when the air is getting colder on the evening in the late summertime/beginning of fall. I know my own body better and treat it with more respect than ever before.

ist2_2899227_welness_massage_stonesI do exercises on a daily basis to prevent back and neck-pains. I have gone a few rounds with my physician, and have been able to determine that my right knee has a injury to it that needs closer attention. I guess I’m simply more bodily aware than ever before, and that is a good thing, because I need to optimize (compensate) for the secondary impacts of my near deafness on my body.

For example, my back pains originate in the fact that I use my neck to protrude my head when I have trouble hearing (you know; putting my ear out to signal that I do not hear properrly). Over the years that have resulted in a neck that does not harmonize, thus straining my back further down, causing secondary symptoms.

A course with a psychomotoric therapist and advices from my girlfriend has taught me this.

The exercises I do now really feel beneficial to me. Amount of back pain is reduced to almost nothing. Headaches caused by stiff neck and stress is reduced. All because I won’t stop trying to figure things out….

Link to Spine-Health, about common cold and hypochondria

In sickness and health

Coming from a lot of resting and relatively no stress I can feel somewhat energized. But the feeling of fatigue is less than one hour away still, and that can be frustrating. But I have come to terms with the fact that this is how it is – for now anyway. And I feel that I’m getting better a little at a time. I hope it’s not just wish-thinking…..

Yesterday I came down with a regular cold. Comes with the season, and especially when you have kids roaming in germ factories like schools.

All hearing aid users probably know this: being hard of hearing makes you a extra deaf when being “stuffed” and having to blow your nose every ten minutes or so… But for people who do not know how it is to be hard of hearing and use hearing aids, it’s virtually impossible to understand the impact of a common cold on hearing aids users. This is what I want to try and explain now.

When common cold occurs, one is likely to get an increase in internal pressure in the neck/throat region due to various swollen glands. This in turn puts pressure on internal organs in the head, hence headaches, light-sensitivity and REDUCED HEARING. When the cochlear has more internal fatigue-736871pressure where the hair-cells are situated, the gel-substance that carries the sound waves to the hair-cells is a little less sensitive. That means that the overall amount of energy that reaches the hair-cells in cochlear is being reduced.

Then there’s also the impact of all the fluids that forms in the sinuses.
With reduced hearing in the first place, such an reduction on the hearing gives a larger effect on hard of hearing, thus making us more deaf.

Aside from the normal symptoms of common cold that makes you tired, feverish and so on, it also makes near deaf’s have to put even more energy into the business of communicating.

I propose that near deaf need an extra low threshold for sickness leave from work etc. It is also important that the employer understand the fact that common cold has a stronger impact of people with hearing disability.

Technorati Tags: ,,,,,,,

Dreaming deafness

Woke up early today from a vivid dream…Behind Closed Eyelids

I was at a banquet or an award show or like, and the hostess and host of the show somehow pointed me out among a lot of people and started making their way towards me.
That would normally be the last thing I would wish for, as I have had a lifelong fear of appearing stupid in case I answered wrong. (you know, if I didn’t hear the question properly, I would answer something else, thus making it funny for everyone…)
With microphones jammed up in my face and spotlight zooming in on me along all the attention from everyone present, they started asking me easy questions I was able to answer ok, you know, to warm me up… 
Then the guy came “to the point” and halfway into his question I lost him completely. That would be where I normally wanted to sink into the ground and die of shame or embarrassment. In this dream I just said: “I’m sorry, I didn’t hear you.” Being very calm inside, laid back and not stressed, I waited for their next move. Somehow the social pressure on me was gone, because they had a show to pull off, and by picking me the “joke” was on them. I could see the guy lost his nerves and didn’t know what to do. At such instances I feel terribly sorry for the person, and want to help, but in this situation they were interviewing me, and I could not help by taking charge of the conversation as I normally would.
The woman stepped in for a try and she failed too…. then I woke up, wide awake…

This was a weird good dream for me. Can’t remember last time I had a dream about being out there publicly. And the thing that hits me about this dream is that I’m just being me and honest about it (that I can’t hear everything), unlike before in my life, where I’d have a number of strategies for “handling” such a situation, thus “saving face”. Doesn’t matter what kind of situation I’m in, I’m who I am… Near deaf and all 🙂

I think this dream was some kind of milestone for me.

Battling tinnitus, headaches and fatigue

While living my life, with the absence of the working life strains, I still have to deal with stuff that is quite heavy.

First out is the tinnitus. Coming on strong in the evening and especially before sleep, I can feel the phase-shift as I have taken out my BTE HA (behind-the-ear hearing-aid) and the sound-world has disappeared.
After only a few minutes the concert starts with mid-level frequency sounds (where I have never ever had a sound chart reading above 110 Db) trying to find the right tune, just like violinist warming up before a show. The level of sound varies a little, and I have different sounds in the right ear from left ear. In short: a cacophony just as a whole orchestra is warming up before a concert…
Sometimes I get a spike of sound. A sound very distinct almost like the ping sound a submarine uses in it’s sonar just lasting a little longer. And that sound startles me every time, since it’s very loud. And it pops up in both left and right ear totally randomly.

Then there’s headaches. I get headaches almost daily for what feels like very different reasons. Sometimes it’s the overload of sounds either in loudness or in durability. Other times it’s strain headaches from stress from various situations, or just plain stiff neck. And the wintertime low sunshine on clear days can also induce headaches. Seems like I have a low tolerance for headaches. Just checked my brain with MR and x-rays and all results came back negative, which is good news. One less thing to worry about.
I have taken some actions to fight the headaches, and I think I’m on the right path. I have started doing exercises for my neck. And I’m doing it very slow and careful now in the beginning, as I get headaches from doing these simple exercises.
Most HOH and near-deaf people have one thing in common: we move our head forward as to signal to anyone that we need to hear better. I think it is also an instinct in order to make the distance between us and the source of sound as short as possible.
My neck is  very agile going forward, but back and to the sides, it’s as stiff as a stick…. So these exercises, bending my head back and forth, from side to side, and rolling my head slowly around are having an impact… I can feel the cracking of neck-bones and the headaches come bad right away, which I think is the rush of blood extending the blood vessels in my head. And my head isn’t used to those extending blood vessels, thus giving me headaches… I hope it’s temporarily, because if it is, I know I’m on track of doing something that will improve my day to day shape.

Then we’re on to the fatigue… Tinnitus and headaches clearly attributes to the fatigue, no doubt. I have also recently heard about a phenomenon called “recruitment” that could explain the sensations I get from my ears and the following feeling of fatigue and exhaustion. Will read more about that later, and research it too. See link to the article I found under the heading: “Special Subjects”.
Depression is also a common factor resulting in fatigue… Am I depressed??? I really am not sure… Sometimes, yes I would say I’m depressed, other times I’m as happy as a lark in the sky singing away… So, you tell me…

Fatigue epiphany

epiphany

Just back from a session with my psychologist, where I dealt with the matter of fatigue. I learned something new about myself, and I guess this knowledge could be useful to many who are hard of hearing or near-deaf.

The state of fatigue is the subject that I want to raise here. Of course fatigue can have many reasons, both external, internal, material and spiritual. I want to discuss the mental aspect of it that became very clear to me today: When I get the notion in myself, that I’m tired, it starts a whole range of other reactions:

Emotions:

  • anxiety (am I sick, is something wrong with me?)
  • stress (what did I do to become so tired??? why is this happening?)
  • sadness (the feeling of fatigue sort of disables me from being energetic, joyful and contributing to my surroundings)
  • hopelessness (damn, is this how my life has become? Is this how I’m supposed to live my life???)
  • and many more… (it is a little chaos of mixed emotions)

The emotions manifests into:

  • Stomach feels like a brick, hard and heavy
  • Neck becomes stiff
  • Sensations of pain are more prone (backache, headache, muscle and tendons)
  • A constant state of emergency (to put it short)

Last week, when I spoke with my incredifaboulofantastic girlfriend about this subject, we agreed that when I have the notion of being tired, I should simply say; “I need a break”.

This was the genius of it: instead of saying that:

“Oh, I am tired, I need to go by myself and be more tired” (thus pushing myself even further into the mental state of fatigue),

I can say, “Oh, my senses had a handful, they need a little rest, and then I’ll be fine again”.

By digging into the notion of fatigue, and really FEELING the weight of the emotions, I have also become more aware of what is happening to me in terms of thoughts, reactions and the results of those… This way; I can make a difference in myself by avoiding chains of thoughts that give me negative emotions and drain me even further of the precious energy I need to cope with the present situation of being near-deaf…

I hope this means something to someone, because it was an epiphany to me!

Technorati Tags: ,,,,,,

Midlife – on new paths

flowers growing_bl_wA pilgrim walking alone
Memory of a time lost
Seeking purpose, connection
From here on

A lot said and done
Not all undone
Lack of time lack of sight
Thinking; time heals all

In breath and movement it still sits
Unleashed, untouched made to ice
Inner frost, loneliness and grief
Pushing for release

New sounds, and paths
Demands new compass and maps
A lone pilgrim still walking
Towards greater insight of body and mind

“Midtlivs – på nye stiar” by Inger Anita Herheim, freely translated from Norwegian by Ulf Nagel

Status update

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.

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:

  • Pounding and pulsating sensation in head (brain?)
  • dizzy (I’m even getting troubles with balance if I overdo listening),
  • my counscious level is reduced (like I’m sleepy but I’m not),
  • concentration has diminished (harder to follow what people say to me, I concentrate harder),
  • cognitive skills reduced drastically (I know this thanks to my un-scientifically measurement method using Su-Doku)

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.

The Doors – When the music’s over

Recently I have stopped listening to music on a regular basis. This saddens me deeply, and I feel it will be fitting to take a moment to mark the transition to real deafness with a piece of music made of a band I truly enjoyed listening to: The Doors. Even more befitting is the song I selected… Hope you enjoy it more than I am able to!

(Mind you, I will be able to hear music again if the CI-operations go well!!!)

Lyrics:

Yeah!

When the music’s over
When the music’s over, yeah
When the music’s over
Turn out the lights
Turn out the lights
Turn out the lights

When the music’s over
When the music’s over
When the music’s over
Turn out the lights
Turn out the lights
Turn out the lights

For the music is your special friend
Dance on fire as it intends
Music is your only friend
Until the end
Until the end
Until the end

Cancel my subscription to the Resurrection
Send my credentials to the house of detention
I got some friends inside

The face in the mirror won’t stop
The girl in the window won’t drop
A feast of friends
“Alive”, she cried
Waiting for me
Outside

Before I sink into the big sleep
I want to hear, I want to hear
The scream of the butterfly

Come back, baby
Back into my arms

We’re gettin’ tired of hangin’ around
Waitin’ around, with our heads to the ground
I hear a very gentle sound

Very near, yet very far
Very soft, yeah, very clear
Come today, come today

What have they done to the Earth?
What have they done to our fair sister?
Ravaged and plundered and ripped her and bit her
Stuck her with knives in the side of the dawn
And tied her with fences
And dragged her down

I hear a very gentle sound
With your ear down to the ground
We want the world and we want it…
Now
Now?
NOW!

Persian night, babe
See the light, babe
Save us!
Jesus!
Save us!

So when the music’s over
When the music’s over, yeah
When the music’s over
Turn out the lights
Turn out the lights
Turn out the lights

Well, the music is your special friend
Dance on fire as it intends
Music is your only friend
Until the end
Until the end,
Until the end

Pre CI-op. seminar

I spent 3 days last week attending a course about CI and how to deal with the long waiting.

First of all I must say it was a good seminar. Especially since I met a woman who has already been through the ordeals of having the CI-operation on both ears. She also works as a physical therapist specialising in psychometric movements, and knows a lot about the stress the body endures when being deaf or near-deaf. It was great talking to her and getting to know her. Inger Anita Herheim (formerly known as Fjose) is her name, and I guess there are a lot of people in Norway who owes her bigtime. Being a tremendous asset to the CI- and hearing-case in Norway, that’s no wonder.

Inger Anita had a task at the seminar, and that was to teach us techniques for handling stress and tension related to our condition. I have encountered Inger Anita once before, at another seminar at the University of Oslo, where she did the same thing. I had a revelation. As I’m prone to get headaches and suffer from severe fatigue, I’m one of her targets 🙂

I need a few things to start on the exercises she taught us, and as soon as that falls into place, I’ll be happy to report more in detail here later.

Moving on….  The seminar dealt mostly with the thoughts that the participants had. We shared experiences and stories in group sessions. Important information came to light:

  • Even the most dedicated and engaged spouse or relative could not possibly, REALLY relate to how the condition of near-deafness actually affected the person with impaired hearing. The consensus was that only through group sessions with other relatives, and in dialogue with specialist (such as physical therapists, audiologist, psychologists etc) who could explain various aspects of the condition, more insight could be reached. More information to relatives from both the near-deaf themselves and from various fields of expertise is strongly needed.
  • In the light of the previous point; the same applies for work-places, governing bodies of our societies and in media.
  • All participants shared the experience that information about CI, about various official and medical services that could help and so-forth, was scarce. The rule is that one has to find out everything for oneself.
  • Participants also agreed that in many cases the life-situation of the near-deaf could be so difficult that help would be needed from a third party to get into programs and to get general help. People who should have information and give suggestions (like primary physicians (your medical doctor) and bureaucrats in the well-fare system) more often than not, FAIL to do their job in this aspect.
  • Near-deaf people need to REPORT their needs even if it’s not there in the first place, in order to make the needs visible to politicians.

I might add more later if I remember more….

CI-nagging round 2 (actually it’s more like round 5 or 6)

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 🙂

Hard to understand?

I just read some of my former posts…  And one thing suddenly occurred to me as a difficult thing to understand; the fact that I get tired of what could be best described as faint noises… How is that possible when I’m so hard of hearing and next to deaf?

Well, the explanation is that the hearing aids I use are tuned to it’s maximum, perhaps a little over the top too…. For me a tractor working on a field a couple of hundred meters away from where I sit is audible (and annoying). The refrigerator has been mentioned. I pull out my hearing aids and listen to the tinnitus instead, it is less tiring actually.
All the faint sounds represent sound pollution to me. Since I need to rest (my hearing) when I’m not communicating verbally or when I have the (nowadays) occasional music listening experience, those faint sounds becomes obsolete sounds. That is by definition noise, to me.

My brain constantly seeks better understanding of the sounds it receives, and thus drains my resources constantly. That is how it must be. But when almost all the hearing has gone, the brains tries to compensate by working harder. My eyes (aka curiosity) seek out visual confirmation of the audio-signals the brain receives.

The hearing aids are designed to enhance ANY sound it receives. It has no way of making a distinction between noise and needed sounds. THIS fact causes overload on my hearing organ and my brain, since this is a constant condition.

The brain is the most fascinating organ in our body, as it is able to compensate and change during our lifetime. Loss of hearing causes other senses to kick in stronger, and when sound is still present, the brain will obviously continue to make the most of it.

The problem presents itself when I, as a human being, are met, and lives with demands that is contradictory to the auditory loss. Add the strains of everyday life in terms of stress, work, rush hours, information overload etc etc, and you have the recipe for a brain blackout if one is not aware of the danger of it.

Plus, I have to work extra hard to communicate with everyone around me. In that I have no choice. It is not an option to isolate myself from the real world where people I love and care for are. If I do that I am certain that depression and darker days will follow. That makes things worse.