Will clean up the best of my old articles and put them on this page. Click the title if u want the original:
|Started my Blog on December 28th, 2006|
Posted by Ulf Nagel on January 6th, 2007
Especially late in the day, my ears feels like they have been electrically overloaded, like a red-hot fuse about to blow. It feels like they’re bleeding, literally. They are hot and sweaty, and I use cotton-tips to wipe out the stuff that’s in there. I do that because my hearing gets worse since the excess liquid in my ear-canal actually dampens the sound that travels from my hearing-aids.
I need all the sound I can get, but recently I have started to wonder if it’s more than my physical ear-organ can sustain. Why is it feeling like it’s gonna melt?
I went to visit my best friend today. He has a daughter, almost 3 years of age. She is very talkative and attention-craving, especially after a little while. I don’t blame her, all kids are like that. The effect it has on me is not a good one though…. It wears me out to separate the sound coming from him from the sound from her… I just have to cope with the situation.
I enjoy seeing my friend and his daughter, make no mistake about that.
What’s worse is that sometimes I have reservations about seeing someone, because I know what’s in store for me…
In order to understand people, I have to concentrate hard. Really hard. Not just at hearing, but at lipreading to. And when that’s not sufficient, I have to use my logics to guess what the sentences spoken are… Or sometimes I just use the old “cheap” way out; I pretend I hear. (ending up with feelings of guilt and remorse, just to make things worse…)
Posted by Ulf Nagel on February 18th, 2007
Nav SYA (the department in the Norwegian state wellfare agency that helps disabled people to a working life) finally set me up for an appointment last week. That was a big relief. To meet someone who understand my challenges and my situation completely.
You see; my disability is invisible, and there are a lot of myths, misunderstanding and most of all, lack of knowledge about it. I don’t blame no one, it’s just the way things are these days. It’s changing, but those changes takes decades.
Ok, moving on; it is a relief to be “seen” as the person I am. As a person who has gone against the odds for years, and to be fair, I have achieved a lot while I was able to work. I haven’t achieved “great” things, but what I achieved was great because I did it despite my invisible disability.
I never let my near deafness define me. I had a normal childhood, I went to regular schools and I had no friends who had hearing aids when I grew up. I listened to rock music and was into street-skateboarding. Just a normal kid.
I never let my disability define me… Hmm, I wanted to do what everyone want to do.
What has hit me mentally recently is the process of recognizing the truth about myself and learning to live with that. Theres nothing new to me practically. Of course I always knew that I am hard of hearing, because obviously I use hearing aids all day long every day. Ever since I was 3 years old.
The new aspect is the recognition of the fact that my hearing is slowly disappearing. And that it is inevitable. No point in denying that to myself.
From defining myself as a normal guy, I am now forced to take into consideration the fact that my hearing is disappearing. That is no easy mindtrick, let me tell you. The psychological term for it is adjustment disturbance or disorder (somewhere in this lane…. http://www.psychnet-uk.com/dsm_iv/adjustment_disorder.htm).
I’m wasted, will write more later. My ears have started to hurt again this weekend. No external factors, and the pain kind of “enters” my head too. I wonder what this is… Is it a sympthom of some kind? Is it only a mental thing that manifests to my ears and gives slight headache?
I will investigate….
Posted by Ulf Nagel on April 27th, 2007
A while back I underwent a test called the IOWA-test at Briskeby. Briskeby is a state-funded research and education center for deaf and hard of hearing. The IOWA-test shows to what extent someone utilizes the technique of lipreading in the process of understanding verbal communication. I scored 50% (with no audio). I will post that and other documentations here as soon as I get around to prep them for this blog…What dawned on me today is that I use the same method for compensating my lack of hearing with the lipreading as I do with the audio that I’m capable of capturing.
To explain it I need to use the analogy of a computer that understand speech:
When I meet someone new, I immediately start recording their speech. Then I decode their speech: The intonation, the accent, the dialect, the volume, the size of their voice, the frequencies and more (than I’m aware of myself I’m sure).
This is a constant process in my interaction with people.
The recordings are put into a database (ie. my own memory). As someone speaks, I pick up similar pieces from the database to compare what I just heard with what my database has recorded. If it’s a probable match, I assume I perceived it correctly.
If it’s an unknown word of phrase, I record and save in my database after making sure I understood correctly.
If I’m mistaken, I correct my database, or add a new recording for the purpose of being able to compare that word spoken in that particular manner at a later time.
Ok, that’s the basics of the guesswork I do when audio isn’t 100% (which is almost never).
With the lipreading it’s a little simpler, but the process is the same. I record a video of facial expressions along with lip, jaw and tongue postions/movements.
When someone I know well, suddenly talks a different language, I always get huge problems in guessing what they say. It usually takes several repetitions and an additional explanation or translation before I’m able to put together all the segments of the word that I did not perceive.
The better I get to know people and the better they get to know how they can facilitate their speech for me, the better the rate of guessing correct by using pieces from my database.
For someone to facilitate speech for me means that they take a pause if something noisy comes by, like a streetcar or a bus. It means that they don’t cover their mouth with a cup of coffee or a glass or their hand etc. etc.
Posted by Ulf Nagel on May 7th, 2007
It has taken me a long time, and a lot of thinking to come to this conclusion: I can no longer work.
The consequence of working for me is that I keep draining myself for the strenght I really need to take care of myself and my beloved son (aged 7). This is the situation right now.
I don’t like it. I’m scared. But I have to face it. I need to gather strenght for the future process of rehabilitating after the CI-operation, and I need to preserve my strenght as I endure the process of slowly loosing what’s left of my hearing.
Today I took the step. I asked my physician to help me apply for a rehabilitation-program in the NAV-system (Norwegian Wellfare System). This will take me out of the work-training-programme and into a more long-term programme aimed to get me back to work after the CI-operation.
Hopefully my new strategy will pay off in the long term. Gods know that I have really tried hard, and at the best of my abilities to get into/stay in a job-situation.
I’m too tired to write more today…..
Posted by Ulf Nagel on May 21st, 2007
How can one describe a permanent condition to someone who does not have that condition? If this condition is all I know, how can I know what the difference is?
The condition I’m speaking of is the residual hearing I have left. Just to be very clear on this matter: I have compared audio-charts with people who are totally deaf. They cannot on their life perceive a sound through the hearing-organ. My chart is basically identical. Yet I can talk to someone in a relatively secluded surrounding almost like a person with a normal hearing. I’m a bit puzzled by this myself.
The fact is that I’m deaf, but I can listen to music, hear sounds on films etc. Now, what do I get from the music? It’s clear that I do not hear what you hear, right? Well, my audio-world is unique, and I am at the brink of total deafness. It’s slow torture.
Right now my head is pounding. An area from just above my ears, going up to the top of my head is pulsating. The pulsating sensation is not like a headache, but it’s very similar. I can sense it down to my teeths and jaws.
I tried listening to music today, and I had to shut it off at once. I just couldn’t bear it. Felt like having stuffed my ear-canal with waxed-cotton, standing inside one of those old phonebooths with a boomblaster at full volume. Too much sound and too little space.
Today I have a day of relaxation after a weekend with my very energetic and playful 7-year-old son and my girlfriend. The weekends is supposed to be a time of recreation, relaxation and fun. And it was, total bliss, really. Being with the people whom I care for the most in my life, and loving them and they loving me back. But, for me it now feels like I have been through double shifts of hard work all weekend. So now I really feel like I need a weekend after the weekend. It seems I’m good at mobilizing and channeling my strenght to where I need them the most.
I’m still struggling to feel when enough is enough.
Anyway, the sensation in my head does feel more physical than psychological. My ears are practically hurting, and for the first time in my life, it seems that having NO SOUND is the ONLY thing I can do… That is… Well, to be frank, IT SUCKS!!! Up to now I felt like I had a choice; preserve and rest until I need or want to hear. Now it’s just survival.
I know it’s a passing condition. I’ve had the sympthoms before, and they pass and I feel better againg for some time…
Posted by Ulf Nagel on May 26th, 2007
First of all – your audiochart will show that you cannot hear sounds with less than 90 dB in most of the range of where the human voices has their frequencies.
My hearing is almost all below 95 dB. On both ears. The range frequency is from 125 Hz (deep bass) to 8000 Hz (high pitch).
The biggest and most difficult symptom to become aware of, if your hearing slowly degrades like mine, would be the fatigue. I for my part couldn’t understand why I kept becoming so tired. It took many years to understand.
I did everything I could to improve my health over the years. Changed my diet. Exercise (which I have done on and off for more than a decade now, fortunately). Minimized intake of alcohol. Focused on sleep hygiene. The list can go on….
And still I was dead tired… I pushed myself harder, thinking this will pass. Eventually the pushing of myself became a habit, and all of a sudden I had erased my own limits of when to step back and take a breather. This led to a collapse, mentally.
The mental signs would be, of course, the tiredness, followed and accompanied by loss of cognitive skills (I use Su Doku to check my brain to see if I’m able to work them out). One might also try to read a book. If you’re not able to keep the eyes focused and conentrate on the content of what is being read, well, maybe time to relax?… Short term memory becomes worse. (I have learned to cope with it by using strategies like making people send me SMS or e-mails, writing down lists and using a my PIM a LOT!!!)
(A PIM is an akronym for PersonalInformationManager. My PIM is my mobile, I enter all my appointments, names of people I’ve met, numbers, adresses etc. Also my computer is a great tool when also syncronized with my PIM)
Further on with mental symptoms following the fatigue caused by overcompensating for lack of hearing:
Sleep-disturbances has been a big issue for me. A psychologist helped me through that…
Stress-tolerance declines and declines until something is done. This is just like a “burn-out” we hear about when people has been working too hard for too long. With low stress-tolerance, even a trip in the car becomes a huge straining factor. Only to commute to and from work can be so tiring because of the stress that it wears one down even further and harder….
I for my part was also prone to invent strange thoughts about other people. Suspiciousness, mild paranoia, anger towards people I love etc etc. There are many things that can relate to this, and the cause isn’t solely related to the hearing alone. But it has some bearing obviously.
Because the hearing declines, one also becomes more of an outcast in social situations. Being in a place with a lot of people, and almost never understand what everyone is laughing about can be hard to cope with. And when that happens over and over again, it is easy to fall for the temptation of faking that you understand. It’s part of social interaction. It’s normal to want to be part of the group and want to interact…
Last but not least (for the time being) is frequent headaches. They’re secondary symptoms to stress and fatigue. Headaches can also be caused by tensions in the body, also muscular and skeletal pains has become big issues concering my health recently.
Posted by Ulf Nagel on June 2nd, 2007
Recently I have become more and more disturbed by a phenomenon whom I have had on and off through the years… Tinnitus…
Tinnitus are sounds that “creates itself” in my cochlea. The tiny hair-cells that are designed to react to the vibrations of sound in the gel-filled space of the cochlea, can continue to send signals, even without the presence of soundvibrations… And these signals are almost always a symptom of that the haircells have been broken. That means they cannot receive and react to soundvibrations as they should do… Hence the reduced hearing or deafness…
Phantom sounds is as good expression of it as any….
My tinnitus comes every now and then, and always when I have taken off my hearing aids. Usually I think it appears when I have a rush of blood to my head. For example when I have a really long and good stretch combined with a huge yawn… The the blood rushes for a short moment, and the sounds report in…
I hear the cooeing of pigeons and owls… And the sounds are not consistent, they change in rythm and length and strenght. Sometimes these sounds are accompanied by thinner squealing sounds almost like electronic equipment complaining… It’s a veritable orchestra sometimes, and the orchestra can’t be shut off.
Sometimes I have to put on my hearing aids, because with real sounds, the tinnitus subside and sometimes disappear completely.
Posted by Ulf Nagel on June 8th, 2007
I’ve had it before, but never for such a long period, and never so annoying. It has gone from this rather peculiar cooing sound that pigeons and owls make, to a steady signal. (same frequency – or tone if you prefer) The damned thing also seems to be controllable in some psychological manner… I just put my head to the pillow, real tired and ready for a good nights sleep. In the second I thought, ” good thing I don’t hear the tinnitus now”, it came on full force… (the sound is there almost only when I have taken off mye hearing aids… Just a few times I hear it with normal audio-world on)
Is the sound there to spite me? Is it imagined, am I going crazy? Is it a sympton of a certain hair-cell in my cochlea that has it’s death-angst-cries before it finally ends? What?
I have found out, or rather decided that I won’t let that shit annoy me. If I let it annoy me, the only one to suffer the consequences is me. So I rather be like a grass in the wind, I will bend and do something else… I just tried Su Doku, to try to get my mind away from it. Didn’t help now though, ’cause I’m overtired, and the Su Doku thing is on automatic these days. I have done quite a few…. I have a whole book… Working on the “difficult” section now…. After that it is the “fiendish” section
So I thought, nah, better write some, use my brain more creatively… And it seems to do the trick… At least the tinnitus has faded a little in strenght…. Strange stuff…. I have to read up on the subject of tinnitus… And add the weblinks I come across to this blog…
As a sidenote; I just came back from a lone-trip to our newly bought small-farm (don’t know what else to call it). No animals or anything, its just a big house, two barns with a workshop and a beautiful lake only 100 meters from the house. I just went about my small projects like fixing up a Mercury outboard engine (9,8 hp), plowing a little field (no real success, I guess I just got bigger respect for farmers), getting the ‘59 Fordson Power Major tractor to start again and some creative stuff… (now the tinnitus got stronger and louder again) Point of this sidenote: it was easier to relax, and I feel the tinnitus was fainter too… Perhaps it is all about perception… When I’m tired I perceive the tinnitus as stronger and more disturbing???
Posted by Ulf Nagel on June 13th, 2007
Schorching hot days was bliss, and an experience. Up here in the northernmost part of Europe we’re not used to temperatures up to 30 – 35 centigrades. Fatigue becomes more prone, and in that persepective I learned that being more tired makes it easier to fall asleep even though the tinnitus is having a field day in my hearing-organs…
So it is a paradox; in order to feel like I sleep relatively well, I have to be really tired before going to bed. If I’m not really tired, well, then I can expect a rough night. So in the end it all becomes even… A steady state of tiredness. And that’s nmothing new to me. I’ve been really tired and never really rested and fresh the last 5 to 10 years…
This represents a challenge in itself. How do I know when my batteries are getting charged in the long term? I know being tired so well, that it has become my normal state.
I’ve spent the last months really feeling. Feeling about the tiredness, how a good night affects me, how everything affects me, even the food I eat. I would think I need to do more of that feeling in the months to come. Get to know myself.
Posted by Ulf Nagel on July 18th, 2007
As for my condition; I still get quickly tired. Today I haven’t used my hearing-aids at all. I just sit here listen to my tinnitus come and go (I have noticed that the tinnitus disappears when I engange my brain into creative activities). The refrigerator here is making a little noise, it wears me out quickly and I don’t even notice it before it’s too late….
Lately I’ve been thinking that maybe I developed some kind of hyper-sensitivity to sounds as well? Is it possible? I mean, I’m loosing my hearing, how can I be hypersensitive for sounds? I read in a newspaper about a guy who had been over-worked, and he told the readers about how he couldn’t stand the sound of newspaper rattling or crumbling. That sort of things…. It makes sense: input overload gives hypersensitivity… It’s a natural reaction to excess input….
I try to listen to music every now and then. To my disappointment, I cannot endure for long. One year ago, I could listen to music for hours. Now I usually have to turn it off after 90 minutes…. And I have started turning the soundlevel down as low as I can. I can’t hear the music as well as with louder sound, but that way I can listen a little longer. Still it’s very limited. It’s just sad. I love music. I always did. Energetic music, moody music, love music, medtitation music and so on. The quieter and slower music doesn’t give me anything anymore. I loose too much of the whole soundpicture for it to be enjoyable. That leaves me with the energetic music with a lot of rythm. The rythm is good. My brain remember many of the songs and certain sounds I cannot hear, I can remember….
Posted by Ulf Nagel on January 22, 2008
During my research into my own declining hearing- and health condition, I came across information about a phenomenon regarding hair cells in cochlea called “recruitment”. I strongly suspect “recruitment” is what happens to me. It certainly would explain a lot of the things that happen(ed) to me and my hearing and the fatigue…
(Most of the text that follows is copied from this page at hearinglosshelp.com and edited by myself for the sake of this blog and my readers.)
What is “Recruitment”?
Very simply, “recruitment” is when we perceive sounds as getting too loud too fast. How is it possible to hear too loud when the hearing in fact is vanishing, you may ask… Well, be patient with me and read on…
“Recruitment” is always a by-product of a sensorineural hearing loss. If you do not have a sensorineural hearing loss, you cannot have “recruitment”. In simple layterm this means that this condition only affects those who have a significant loss of hearing caused by haircell-damage in cochlea (mainly).
As a sidenote; there are two other phenomena that often get confused with “recruitment”. These are hyperacusis (super-sensitivity to normal sounds) and phonophobia (fear of normal sounds resulting in super-sensitivity to them). Both hyperacusis and phonophobia can occur whether you have normal hearing or are hard of hearing.
An analogy for understanding how “Recruitment” got its name
Perhaps the easiest way to understand “recruitment” is to make an analogy between the keys on a piano and the hair cells in a cochlea.
The piano keyboard contains a number of white keys while our inner ears contain thousands of “hair cells.” Think of each hair cell as being analogous to a white key on the piano.
The piano keyboard is divided into several octaves. Each octave contains 8 white keys. Similarly, the hair cells in our inner ears are thought to be divided into a number of “critical bands” with each critical band having a given number of hair cells. Each critical band is thus analogous to an octave on the piano.
Just as every key on the piano belongs to one octave or another, so also, each hair cell belongs to a critical band.
The requirements for “Recruitment”
When you play a chord on the piano—you press two or more keys together but they send one sound signal to your brain. Similarly, when any hair cell in a given critical band is stimulated, that entire critical band sends a signal to our brains which we “hear” as one unit of sound at the frequency that critical band is sensitive to. This is the situation when a person has normal hearing.
However, when we have a sensorineural hearing loss, some of the hair cells die or cease to function. When this happens, each “critical band” no longer has a full complement of hair cells. This would be analogous to a piano with some of the white keys yanked out. The result would be that some octaves wouldn’t have 8 keys any more.
Our brains don’t like this condition at all. They require each critical band to have a full complement of hair cells. Therefore, just as any government agency, when it runs short of personnel, puts on a recruitment drive, so too, our brains do the same thing. But since all the hair cells are already in service, there are no spares to recruit.
Getting to the point – what “Recruitment” means
What our brains do is rather ingenious. They simply recruit some hair cells from adjacent critical bands. (Here is that word: recruit or recruitment.) These hair cells now have to do double duty or worse. They are still members of their original critical band and now are also members of one or more additional critical bands.
With only a relatively few hair cells dead, then adjacent hair cells may just do double duty. However, if many hair cells die any given hair cell may be recruited into several different critical bands, in order to have a full complement of hair cells in each critical band.
The results of the phenomenon known as “Recruitment” – the conclusion
The results of this “recruitment” gives us two basic problems. (notice the underlined parts!)
Posted by Ulf Nagel on January 23, 2008
I came across an interesting website for an organization called VEDA (VEstibular Disorder Association). I found this list of possible symptoms that is very interesting.
Image copied from “vestibular system.” Online Art. Encyclopædia Britannica Online. 23 Jan. 2008
I did not initially place all these symptoms into the same category (i.e. having to do with my hearing), but maybe I should have??? I exctracted the whole list and will excempt (a strikethrough line) those not experienced by me. If commented, the comment has been marked like this.
This list was a revelation to me… It all fits, kind of… Seems it connects to the wiring of the vestibulo-cochlear nerve: the nerve that carries information from the inner ear to the brain. Also called the eighth cranial nerve, auditory nerve, or acoustic nerve. If the “recruitment”-theory in my previous article holds water, the information about these symptoms could also have some bearing on the subject of my condition.
Cognitive and psychological
I have to add that on several occasions I had trouble going down staircases. I suddenly get this this “wooden leg” and almost trips. Never had this before, but now I’m not walking down stairs without holding on to the rails. I guess this is a combination of very mild vision disturbance (sudden change of depth and altitude/distance), my deteriorating knees (I seek medical assistane on those now) and a vertigo/balance issue caused by whatever is happening in the vicinity of my vestibula…