Another chapter…

Right now I’m writing from my temporary new home: Ål Folkehøyskole. I’m in the process of learning Norwegian sign language. This stage of rehabilitation will take me through the winter up until May 2014.

Why sign-language now, after two CI’s?

girls_signWell, several reasons. Prime reason is that my wife and I found out we had to take some serious action if anything is going to change or improve with me (and along with me, the whole family). The biggest concern now is still severe fatigue (resulting in loss of cognitive skills, lack of concentration and sleep disturbances et al.) caused using the CI’s mixed with tinnitus and other immune system related issues.

The price to pay

missuMy wife pays the biggest price this year, being alone with two children with a fulltime job. I can’t begin to tell you how much indebted I feel. She is just awesome!
Then it’s the being apart from each others that all of us has to endure. Luckily I have my CI’s, and can Skype-chat with my children and wife.

My health, post-CI

Since my last CI-activation, I have focused on resting and getting rid of stress in order to get my energy back. Finding a balance has been my main goal. It has been a struggle (still is), for many reasons. Having a toddler who has trouble sleeping well at night due to medical reasons is one of them.

rehabilitationHealthvise, the situation has improved. My physiscian and the health-system has been able to help me with several smaller health issues that in combination also took a lot of my energy before.

Overall, things has improved to the extent I can tell the difference. But unfortunately, that is still not enough for me to be able to just live my life without concerns about my ability to function the next day. It takes a lot of time after so many years being chronically ill. Years actually.

Rebound

reboundWhat was hard to get into the latter year was the physical exercise that I have known for a long time was overdue. Being chronically fatigued means you just can’t exercise like any other person. In fact it can make your health worse. It’l like when an athlete is overtrained, he has to stop training.

Now I finally have a set of parameters in my life that allows me to focus on that. I am, 10 days into my school-year, well underway with great results and feeling well about it too. Mostly swimming, but also focus on diet and weight. When I get results from that regime, other things will follow, among them; more energy and less impact of winter depression (hopefully). This will be an interesting process.

CI and sign-language?

Yes, they combine well! CI is not only about hearing again, period. It is about hearing as well as you can. It is NOT ALWAYS the total solution. For a whole human being to maximize the profits of such technology, we have to consider the whole picture.

For me the CI presented the ability to hear quite well again after going (being?) deaf for nearly a decade (of which the last 5 years were totally unnecessary, but that is another issue). However, the CI cannot give everyone super-hearing again. For that the technology is still too crude, and the interface between man and machine is too poorly designed and developed. And let’s not forget that the brain is still the boss, no matter how good the technology is or how motivated an individual can be. If the brain has been left without sound-stimulations for too long, the brain develops in other directions, improving other areas in order to compensate. Inserting CI in a lifelong deaf person doesn’t make much sense in that aspect.

social skillsThe key here is SOCIAL HEARING. The ability to apprehend speech. I have trouble maintaining a meaningful conversation if there is other people speaking nearby, or if there is ambient noise around me. I can push and strain myself and achieve a fairly good result. But it has a very steep price; fatigue.

Ambient noise wears me out

Ambient Noise, With Sprinkles_sWith CI, I perceive all sounds around me, like I have never done before in my life. The sounds of an airconditioner, wind woshing in the trees, various creatures moving around, kitchen utilities running, children playing/singing/etc are all sounds that mixes with what I need; speech from someone communicating with me. That mixing of sounds gives the brain a lot of work, which in turn makes me quickly tired. Then add the tinnitus (which "fogs" incoming sounds too), the brain’s previously adapted compensating techniques of lip-reading, putting togheter pieces of comprehended words, guessing the missing parts etc etc. This all adds up to a bill that is simply too big for me (and my brain). It’s just not sustainable.

I can’t function solely on CI for a whole day, let alone the rest of my life. hat’s why I’m learning sign language now; I need yet another compansation technique! One that supports all my other communications skills.

The biggest part of sign-language

The biggest "challenge" of sign-language for my family isn’t me learning sign-language. It is providing my family and people around me with the opportunity to learn it too! I’m fortunate to have a wife who understood this before I did (at least she was the one who saw the necessity for taking the big leap). Without her understanding, support and initiative, I would still be sitting home being tired all the time. But the support-system in this regard is just too weak and unsupportive here in Norway. We can do so much better.

aslsignfamilyCommunication is all about social interaction. We as humans are social beings. Without social interaction we are unlikely to be happy and contributing. The meaning of life is to live the life among other human beings, experience emotions and so on and so on. One person getting socially isolated is a burden for us all, not just the one.

One deaf individual in a hearing community, can be a loss for the whole community. One deaf family member can be a loss for the whole family. Thats why rehabilitation of deafness also includes those around that individual.

 

to be continued….

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Michael Chorost explains the concept of Cochlear Implants.

The Author of “Rebuilt”, Michael Chorost was recently captured in a video interview published on YouTube. I found his explanations so elegantly put, that they should be viewed by everyone interested. A lot of information, but at the same time, very elegantly put and easily understandable.

Hope you enjoy these: it’s divided into four videos, and 1,2 and 4 are captioned… (don’t ask me why the third isn’t captioned, I don’t know)

Part 1
Part2
Part 3
Part 4

Insight through peers

A little while ago I received a comment on this blog. Richard Rutherford had something very important to share. I feel compelled to provide his thoughts to you all, in it’s own post. The initial reason for that is because of what he put his finger on: the issue of audism related to self destruction-mechanisms. I feel he definitely has a very good point. In addition, we had an exchange of thoughts afterwards, which produced additional noteworthy points (these are expressed at the bottom of this post, after the “letter”!).

expectation-24I had not thought about this issue from the aspect that Richard offered, which is such a beautiful thing about this form of communication (i.e. blogging); one thought or experience leads to another thought. Richard puts it so well in his letter, that I put it here, word for word. (Richard, you should seriously think about writing your own blog :-)  )

As a comment, I would like to say that this issue, even though I didn’t realize it until I read his comment/letter, was one of the major things I worked with during the two years of psychological therapy I underwent in 2006-2008.

(I underline the good stuff, which I found particularly interesting, add links and images which I find suitable (for your viewing pleasure 🙂 ))

So, here it is:

=====Start of letter======

Read the rest of this entry »

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?Alone in a Crowd

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

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.

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 »

My hearing diagrams

Finally got myself around to scan these charts and post them here 😀

First of all, here is a source of terminology and technical explanations related to sound.

From 2004:

hearing diagram 2004_fixed

The yellow “banana” is the speech discrimation area for normal hearing. Deafness is defined as below 85 dB. The measurement stops at 100 dB. On this measurement I was intent on doing the best I could, so I probably cheated by looking at signs in the face of the lady doing the test, through the looking glass from the booth I sat in…. Another problem is phantom sounds or echoes that appear from the test itself. Did I hear it or not? Was it a phantom sound or a real test sound? I have taken this test so many times that I quickly get the rythm of sounds from the audiologist and know when the sounds go up and down… I know their testing regime instinctively… Sad thing it only hurt myself when I cheated on the tests, the hearing aids were adjusted based on these results…

From 2006, 2 years later:

 

hearing diagram 2006_fixed

A noticeable drop in the 125 to 500 Hz-area (the deepest bass sound frequencies). This is the last test I took before commencing the long road to a CI in Norway. There is no doubt, the hearing is declining and I am clinically deaf, and have been for some time….

I also took a speech comprehension test (bottom chart on the 2006 diagram) and I think I scored 0%… What I heard I could only take a wild guess on….

What’s next?

Not before long I will post an abridged translation of a letter that I have sent to the Norwegian Treasury Department (Finansdepartementet). This is something I have been working on for some time now, in the wake of the budget cuts at the premier hospital i Norway; Rikshospitalet (ref. last postings regarding my interview on national tv etc). This work was also the reason why I needed “time” off from my blog (good thing the Easter came in the middle of this). Stay tuned friends!