In life there’s often places that give you a feeling of deja vu, you keep coming back to them and they have a special importance to you. I would like to talk a little about one place that have, more than anything else, had a profound effect on my life. In fact, everything I do and half the people I know seems to have some connection to it. For instance both my current better half, and also my former, were students at this place. This is kind of ironic, because I remember that when I graduated I did to a certain extent want to distance myself from it, to move on with my life. It wasn’t about dislike or anything like that, but I was ambitious and had very clear ideas of what I wanted to be and do and that was sooo much more than just this. Ah, youthful ignorance and arrogance! Ironically, in retrospect I think the conclusion would have to be that every single one of these grand plans ended up face first on the ground so hard it made the asphalt sing ;) Life!

The place I’m talking about is my old upper secondary/high school, Briskeby, where I spent three great years back in my late teens. It is a school for the hard of hearing and also an educational centre that do courses and otherwise try help hard of hearing people with many different conditions to a better life through mastering, understanding and coping with their condition. It’s owned by the norwegian association for the hard of hearing (HLF), yet financed by the government. The school is unique in Scandinavia because it focuses on the auditory, or “oral method”. That is, the very core philosophy of their educational method is that spoken language and not sign language, if possible, must be the primary means of communication.

Before I get decapitated by a horde of angry deaf, there’s nothing wrong with sign language at all, in fact it’s a fantastic aid and tool, but it is indeed kind of hard to function in the world of the hearing if you don’t speak their lingo. Besides, it’s kind of a shame to lay waste to whatever hearing people have, even if they have a quite substantial hearing loss. The wast majority of hard of hearing people are in fact just that and not deaf as the public seem to believe. Hearing need to be used too, in order to keep those parts of the brain active and functional, if a child (with a hearing loss, not deaf) grow up in an all-deaf no-sound community, it do not develop the ability to hear and speak orally and this cannot be fully mended later, exposure to sound and speech has to happen at the right and corresponding stages of the development of the brain.

Also, it is difficult for a deaf person to learn to write properly and within the regulations. Sign language is very much just that, a unique language with its own grammar, expressions and nuances, it is not just a rough adaption of spoken or written language. When a person with normal hearing learns to write, he has a lot of support from the spoken language he already know, obviously some fine-tuning is required and grammatical rules need to be learned, but even a heavy regional accent and variety of spoken Norwegian is a lot closer to written Norwegian than Norwegian sign language. Clearly, as we live in a world where most people work in offices, being able to write is kind of important. Not saying deaf can’t write, pretty much all can, and some very well, but their learning process is much more demanding and their written language is on average less adequate than that of the hearing person.

At this point I need to clarify the term “hard of hearing”. You see, it is sort of an umbrella as it include both people with a hearing loss, but also people with other conditions related to hearing such as Tinnitus or Ménière’s disease. Hard of hearing people are in fact a much more diverse group than most “normals” know. It’s also a very large group, actually, in western industrialized countries it is often suggested that 10 to 15 percent of the population somehow fit within the “hard of hearing” term. In other words, the hard of hearing are not just some weirdos in the corner flapping around with their arms speaking with their hands, they are a huge and substantial part of the society with needs that have to be addressed. That’s basically what my old school and centre of competence is all about. Giving hard of hearing people of all ages some of the tools they need to live, function and flourish in a world of sound.

Now, It’s been ten years since I went to Briskeby as a student, I’ve worked and studied, I’ve had my ups and downs, gone through a few relationships and hit the wall too, both figuratively and literally (hey, I’m almost blind, walls do get in the way from time to time!). Basically, I’ve been living, breathing and experiencing. Yet, now I’m back there, as an employee! Ten years is a while, but there’s still a lot of people I knew around, both teachers and other employees. Various specialists, for instance on hearing/sound constitutes part of the staff, but being a school there’s understandably a lot of educationalists of all kinds around.

Man, it’s weird! How do you deal with technically speaking being a colleague of someone that was your teacher back in the days? They were authority figures that through their skill and knowledge taught you difficult subjects and had considerable impact on the forming of your personality and academical foundation. Now, I bet it’s a new experience for them too, I don’t think they expected to have me back (dang, didn’t we FINALLY get rid of that bloke like ten years ago??) That said and a somewhat awkward or formerly-not-experienced social situation aside, more than anything else working at Briskeby is like coming home. Walking through that so familiar door is like entering another world, a different world. A world where being hard of hearing, being handicapped, is normal, where mostly everything happens on “our” terms. I guess it’s a feeling that can only be understood if you’ve truly seen society from the sideline, if you’ve felt how it is to be prevented from participating in the community because you’re different.

The tale of how I ended up back at Briskeby is one of many twists and turns, but it started with volunteer work back in the early fall of ’09. Ever since I landed on disabilities I’ve been doing various kinds of volunteer work, I was a janitor at a children’s home, I made food for the homeless and so forth. It’s been a conscious choice as I knew I would benefit from keeping myself active and keeping my brain ticking. The combination of volunteer work and disabilities allowed me to work within my functional ability and still at least keeping a (tiny) toe inside work life. To make a long story short, I was put back in touch with the good folks at Briskeby, I had an interview and they graciously took me in as a volunteer worker. Since then I’ve mostly been working with various IT-related stuff such as web-development/design, for instance their student blog. It’s not really my absolute favorite cup of tea, making web-pages, but I know a little about that process, it’s okay work and more important, I’ve got competence they currently lack. In other words, a win-win for both sides of the equation.

Obviously I must have been doing at least something right, because my boss started hinting of the possibility of ahem…”formalizing” my relationship to the institution and I sort of hinted back that I wouldn’t mind that (it might have been the other way around, details…details). Thus, they’ve offered me a position and I said yes. It’s obviously part-time, my condition makes full-time employment unrealistic and also I’m on benefits which means there’s a lot of rules regulating how much I can work and earn. A job is a job though, and working at a place whose purpose is to make a difference for people and not make money for a owner is a privilege. I can’t say anything else except that I look forward to being a small part of this place and make a tiny contribution to the very meaningful work they do. Yes, if there’s any doubt, I’ll confirm that I am in fact an idealist, although I’ve surely had my share of illusion-robbing experiences and accumulated substantial quantities of bitterness so far in my life.

I have to brag about the  people that work there, because they are fantastic, very friendly and truly into what they do. It’s really inspiring to be around people like that and I enjoy it very much. Of course, working at a place like this is more than just a job for me. It’s something I can’t say no to because I so honestly believe in what they are doing and know from personal experience the importance and necessity of their efforts. Hence, 2 1/2 hours of traveling time per work-day don’t stop me and I maintain a tight sleep rhythm by getting up at 06:30 every bloody day, even when I’m not working, in an attempt to function more or less okay on the work days (I’ve had sleep issues for more than a decade).

What the future will bring I do not know, there’s still many different threads that need to be tied together for the  tangled bunch of fibers that is my life to become a rope, and it won’t happen with the blink of an eye. I always think of it as finding a balance between my skills and abilities, my medical condition and energy level, quality of life and some participation in professional life. I have a definite need to do something constructive and productive, yet it need to balance with actually having a life too. All work and no play, makes the blind ‘ol bat Mac a dull boy. I do feel healthier and better than in many years, I live with an amazing woman and my photography is certainly a creative outlet, a general focus and who I am. I can’t beat the realities of my severe medical condition, but I can most definitely live with them (got no other choice, do I?).

Lately there’s been an ongoing debate in Norway on the social security system and the various social benefits. This debate seem to pop up every once in a while and is not exactly new under the sun. Living in a more or less free and democratic country it is also necessary, you have to question the validity of your current system and occasionally measure it up . Being young and disabled I am directly or indirectly one of those whose condition and ability are in danger of being discredited and whose living conditions may very well be affected.

I was one of four disabled people featured in an article attempting to give those that is the statistics a face, so to speak. Obviously things don’t get much more public than this and I feel a need to explain some of my personal perspective on the debate. This is not really why this blog exist, but it is the only available and unedited medium I’ve got ready access to and if someone Google my name they are likely to find their way here.

The Faces Behind The Statistic
One of the three large national newspapers, the conservative Aftenposten (fairly liberal by American standards), have published a number of articles over the past few months, highlighting various sides and arguments concerning both a major ongoing reform in the social security system, the unemployment rates and grim sick leave statistics. I’d say it’s been good and healthy series of articles and generally speaking quality journalism, even if it’s hard to avoid a certain tendency to social pornography when featuring those affected by the social security system.

Earlier this week I was contacted by the Norwegian Association for The Blind on behalf of Aftenposten,  looking for people currently living of social benefits (we have a number of variants). They explained that Aftenposten wanted to do an article to sort of show the faces behind the statistics. My daily bread and butter is financed by a form of disabilities pension and I sport the lovely diagnosis Usher Syndrome resulting in the medical and judicial definition “deaf-blind”. A definition that is difficult to comprehend without inside knowledge of the medical and practical aspects of a condition such as mine. I am severely hearing and vision impaired, but I still have some hearing and sight left, my world is not completely black.

I felt I had to make myself available for this presumably good cause. Especially the young and handicapped need to be heard and reckoned with, although no-one seem to really want to hear us out. I’m not a spokesman and I hardly think I’m suitable either, but I am a conscious individual with the right to join the choir. In Norway, as in most countries, you seldom hear the voices of the poor and otherwise less fortunate. They seem to be a boring political problem and in many cases human shuttlecocks of the bureaucracy. My experience is that in particular the young and disabled are neither politically correct nor vocal enough to warrant any serious or constructive effort from the law-makers.

To make a long story short, I was interviewed, photographed and videotaped, together, but not at the same time, as three others in similar situations as me. The article appeared in the printed edition today, Saturday, as well as both text and and video on their website. The journalist and her photographer and videographer all behaved in an exemplary manner. I was also given the chance to correct my part of the article before publishing. The end result is completely acceptable, although I wish it was more in-dept, but there are obvious limitations when they feature four different “destinies” so I make no complaints. I’m no more overly exited of displaying my questionable mug in national media today than I was when I appeared on TV a few months ago.

The Luxurious Life On Socal Benefits
The finance crisis is the spark that set off this current round of debate concerning our welfare system. Although Norway have fared way better than pretty much every other country in the world, the effects are still noticeable, we experience increasing numbers of unemployed and individuals on long-term sick leave. Recently that last phenomenon have been in the spotlight, because these people can receive fairly generous sick pay and some feel there are a lot of frauds and swindlers among them “taking a holiday”.

From this and also earlier debates you get the impression that there seem to be a kind of “bright” idea in certain circles, that there are no disabled people, they are only lazy. The reality is of course a bit more complicated. I believe there are few people that willingly choose a “career” as a social benefit frauds. The result of living on social benefits, especially if you’re young, is social and economical ruin and in terms of general “life progress”, pretty much a suicide. You just don’t have the financial muscle to build a life, a home and a family and you loose out on the very important social side of a workplace. Everyone else you know progresses and build their lives while you’re left on the sideline to watch.

I’ll illustrate this by using myself as an example (what I make is not exactly a state secret, just standard rates). I pay a rent of about 1300 $ per month for a very modest 2-room apartment. Add power, Internet, insurance and the common recurrent expenses and you’re easily forking out between 1700 and 2000 $ per month. Food, clothing and so forth not included (easily 800-1200$). On disabilities pension I gorge myself in the jaw-dropping sum of 160-170 000 NOKR yearly, about 30 000 $, or some 2500 $ monthly. Since we’re two people and split the rent the wheels keep turning, but there’s not any financial overhead for me. This boils down to the fact that I haven’t got a snowballs chance in hell to get a house loan or otherwise “establish” myself. Only if my spouse get a decent paying job we’re golden (she’s about to finish her masters). Ultimately it’s pretty much hand-to-mouth as long as I live in a major city with high living expenses. Living in a major city is an advantage, some would say a requirement when you’re severely vision impaired, mainly due to public transportation, short distances and health services.

Clearly, the financial situation causes me a lot of concern. If a tooth needs fixin’ or the fridge goes kaput, I’m dead out of luck. It’s either borrowing money from friends or family, or selling the few of my possessions that have some value. Say I wasn’t the marrying kind, or simply disabled in such a way so that I could not realistically hope to attract a spouse, then a life of potential social and economical misery would likely await me. Now I am lucky enough to have a spouse, a good one too, at least as long as she bother having a blind wreck stumbling about the apartment knocking things over. Yet, it is quite uncomfortable and really not very 1979 to be completely dependent on another persons whims for financial security. Nor is it a secret that divorce and breakup-rates are high these days. Even how well you get along, you sort of have to plan for the worst.

Now, do not get me wrong, I’m perfectly fine with being poor by Norwegian standards. In fact, ever since I “grew up” and moved from home (17) I’ve been more or less in the same financial situation and me currently being on disabilities pension is a conscious choice to ensure a minimum of financial security that I would not otherwise have, given my medical prognosis and chances to get and keep a suitable job (I don’t have a fancy education). I don’t ask for more money, but I’d like for arrangements to exist that would help me to a new fridge if the old one dies, without having to crawl on my knees before my family and beg. Small, interest-free (micro) loans with a flexible down payment plan from the state would be better than nothing for people in my situation. The state already have the muscle and weight to get the money back (IRS) :p

The Obvious Solution For Me..
…is that I should get a job, that’s probably what most are thinking when reading this. “Lazy brat” and so forth. Yeah, I know, but it’s easier said than done. I actually love working, I like feeling that I create something, do something worthwhile. The challenge for me is to find something that balances relatively acceptable life quality with amount of workdays/time. Being vision and hearing impaired I burn a lot more energy than the average healthy person just communicating and moving to and from places. It means that I can for short periods of time manage an a full-time job, but I’ll burn myself out in the process and basically have no other life than work and eating/sleeping before hitting the wall (been there done that).

A part-time job is the logical step for me. Unfortunately and despite of 14-15 years of education I’m pretty much qualified to do nothing. Even if I was and did get a decent paying job, what I would be able to earn from a 50 % position, is dependent on my pre-benefit income, which was very low. I would in fact not be allowed to earn any more than what I get from my current 100 % disabilities pension. Alas, I’m locked up by the rigid and not very flexible rules and regulations of the system. I have not even mentioned the difficulty of handicapped to get jobs in the first place. If you’re handicapped or your name is “Ali”, you’re going straight down to the bottom of the pile. There are laws against that, but it still happens.

I must make a point of the fact that I never planned to end in this situation when I was younger, but life tends to put you onto paths you never imagined or wished for. The path I’ve walked so far have been one of traumatic and difficult experiences with a trail of ruined plans and broken ideas behind me. A common suggestion is “more education” and I heartily agree on that. Education is always good (I guess you could say my life motto is “live to learn”). Yet, regardless of my own understanding of my situation, capabilities and capacity, as things are now I don’t realistically see me finishing a 3 to 5 year education either (likely longer, I doubt I could get through as a full-time student). My vision and hearing deteriorate, not very fast, but it’s not stagnant either, I’m likely operating with a time perspective of 5 to 15 years for my current level of functional ability. An education would also have to be something I could realistically work with for the rest of my life, and get a job with too.

At the present time I am not motivated for more education, and I feel that the best thing for me is to be out among people and work while I still see and hear something. I guess a dream would be to work as a writer of some sort and/or with photography and image editing/processing. Some will perhaps suggest photo journalist and I’ve given it some thought, but without qualifications and with my condition it is unlikely that I could make it in a dog-eat-dog industry such as the media business is today, and surely not over time. I also doubt I got the balls for it ;)

For the time being I keep myself occupied with my hobbies and volunteer work with web development at my old upper secondary school (VGS), which is a school for the hard of hearing. I can take thing in my own pace and remain functional outside work hours while still doing something resonably constructive. I’m hoping opportunities will arise in the future, but for the time being I am where I am and my condition will not get better.

No More About Me (thank God!)
I’m going to close this post by saying a few things related to the ongoing debate on the social security system, yeah the general welfare system in Norway.

1. The way a society treat its weakest members is more telling of its quality than anything else.

2. Make no mistake, Norway have one of the finest public health and social security systems in the world and mostly we are very happy with it. It is sort of our idea that performing within ability and receiving based on need is sort of a good general principle, and you don’t have to be a crazy-eyed sickle-wielding freedom-hating fanatic to think that’s a good idea. However, just like any system, ours still have to be refined and tuned regularly, this is something everyone seem to agree on. What people do not agree on is how to do this.

3. When it comes down to getting more people off benefits and into jobs, no-one, nor I, think that is a bad idea. But how is an entirely different and very complicated question. Forcing people off social benefits through cuts in the very benefits is not a good idea. The number of people on social benefits are caused by a multitude of reasons, and you have to investigate and understand at least some of them before looking for suitable means to help the situation.

4. Our society have gone through massive changes and the great wheel have made many considerable turns over the past 150 years or so. In the last few decades we’ve seen the social structure of our societies changing even more rapidly than ever before. A lot of things are happening, and all at once. I guess one could say that  modern society have got rougher. Not necessarily in terms of poverty, violence and sheer brutality, but in more subtle ways. The requirements to efficiency, speed, competence and productivity are continuously rising with the result that work life have generally become more demanding.

In personal life there’s a focus on apparent success, on material goods, and perfectness. Young and old are bombarded by the idea that you have to succeed in life and engage yourself in mindless consumerism to be socially acceptable. Failing to do so, or the fear of, can be a considerable burden on it’s own. We’re born to the idea that everyone can, will and must make it and there’s no room for 2nd place.

Also, regardless of improved methods to  diagnose psychological conditions and illness, as well as better statistics, there seem to be an increasing number of people developing mental issues. If that is true, our society is no doubt at least partially to blame for that, all cannot be caused by pollution, diet or substance abuse. It’s likely that changes in the social structure, the way we organize our societies and what the  life expectations of people are (how realistic or unrealistic they may be), is one of the keys to understanding the increasing number of people on social benefits and why certain groups people in general struggle. I fear we’re creating society that is just as inhuman as the “barbaric” civilizations of the past. We seem to, even with all our knowledge and understanding, be even less adaptive to the many possible flavors of the human being.

Thank you for your patience. 

Elm Street

It’s pretty obvious, yes perfectly clear and totaly not-at-all surprising, but being vision and hearing impaired do introduce additional challenges to life. As both of my two readers should be aware of, I’m not exactly the human incarnation of the eagle in terms of optical prowess. I’m medically and judicially blind, yet in practical terms not quite so. An odd kind of juxtaposition with the fact that I’m also very interested in and fascinated by photography and the making and processing of images and graphic work. Clearly, my infatuation with image-making is closely linked with my life’s nemesis, the Usher Syndrome and thus dwindling vision/hearing. Making images is a pretty conscious way of overcompensating for what likely lies in store for me in the future. It’s pretty simple, if I do want to make images, I have to do it now. That also includes seeking venues that I, in the name of comfort, would rather avoid simply because they are not fitting for a person with my condition.

Last night I went to photograph my friends band, The Schmucks. They had a gig at Elm Street, a quite historical and even legendary rock club/pub/café in Oslo. Bands like Motorhead, Iron Maiden, Mötley Crüe,  Deep Purple, RHCP and many more have coated its walls with perspiration, so even if they where “only” the warm-up for the old-school British punk rockers in Peter & The Test Tube Babies, this was a great opportunity for a relatively unknown local band and I could not miss it. However, as at least one of you, my two faithful readers are aware of, places like this tend to be dark, tight and noisy. It’s the way it’s supposed to be, rock clubs being what they are, no complaints there. I’m sure those normal seeing and hearing bastards have a great time at such places, but for a mentally old fart that’s getting increasingly calcified veins by the minute and whose mind is slower than a snail on pot, it’s a massive challenge. You have to motivate yourself, tell yourself you’re gonna do it, because quite frankly, it’s scary, even without a possibly horror inducing name like Elm Street. You don’t hear anything but loud, loud, loud music (which I like, make no mistake) rendering any conversation a guesstimate from lip-reading and hearing a fragment here and there. All you see is multicolored spotlights and shadows, and maybe the twinkle in an eye every now and then. Add photographing on top of that, woooah! You silly pre-senile geezer, you should sit your fat ass down in the darkest, most remote corner to avoid doing or receiving any damage to or from the fixture or persons jumping around to the music, and pray for the noise to end and the light to be turned on so that you can run away and go into hiding.

Yet, like several times before, I didn’t. Living with a condition like Usher is like living with a ticking bomb, you’ve got to do things while you still can, while you’re still able to get something out of the experience. It’s pushing your limits and trying to overcome your fears, fears that might, for most people, seem silly and irrational, because for you the alternative is the unthinkable. I had a good time last night. The Schmucks did a very acceptable gig and showed some nice chemistry on stage, they enjoyed themselves and so did the listeners. I got a few shots too, although I got bumped around a bit by some very energetic punkers showing off impressive apparent lack of bodily control on the dance floor.  Would I do it again? Well yes, my medical and financial situation being what it is, not every week, but my love for music and photography remains and I got to try for as long as I can. A potential broken leg or a busted nose is a small price to pay to gather memories, experiences and photographic evidence to treasure when the gray-black fogginess finally overtakes my tired eyes.

As for The Schmucks, I’m happy they invited me, and  I hope I did not bother them too much with my quite literally speaking “flashy” appearance. They make some great punk rock and I sincerely hope they’re on their way to success and recognition! When I’m stumbling around at their gigs, at least they’ll have some photographic evidence to rememer it by.

Ps. Some pictures should be up in a few days.

Caption from my interview with NRK

Thursday the 22nd was a bizarre day for me, so unusual I simply have to blog about it now that I’ve had the chance to catch my breath. I ended up on the evening news and surprisingly enough, it wasn’t because I robbed a bank or threw a cake in the face of politician. I got to flash my questionable mug on NRK which is a national, state-owned TV-channel, basically a Norwegian version of BBC. Love it or hate it, the channel and its news is at least classic and not sensationalist tabloidish in style, they seem to try to keep a fragment of integrity and quality even these days. I was interviewed and brief excerpts where used in a case on a just released report on the condition of the social security system and a lot of other things. There where some heavy criticism, and I was apparently chosen to sort of give the victims of the issues at hand a face.

The quick and dirty story behind my role in this, is that I applied for disabilities pension back in 2007, due to my chronic and severe medical condition. This was the beginning of a personal kind of hell, an not-so-epic battle between man and the system. Basically “they” ignored my application due to practical bureaucratic issues internally in the social departement and certain political goals or ideas concerning who to give disabilities pension. I phoned, e-mailed and snail-mailed them to get some response and for a long time, was dreadfully unanswered or given very vague feedback always requesting more information, even if I’d already given them all they could honestly need. In fact I several times received a standard-phrased letter requesting the same information that I’d sent in several times before. Either they used this to drag out the case for a while longer, or they actually lost the papers due to internal mess. I must admit I wonder where these highly personal papers containing intimate details about me, got to..

I have to mention that it’s not like my medical condition was anything new to them, I’ve been getting certain benefits (educational support and so forth) from them for a decade and they’ve got a thick file on me. Now this quicksandish affair went on far beyond the given time limits for reaching a decision in matters such as my application. Eventually, I could not be ignored any longer, the “noise” generated by me and those assisting me (I where lucky enough to have some great people helping me, you know who you are, thank you!) must have got too loud to stand. A meeting was called and a deal was worked out, not for the permanent disabilities pension I’d applied for, but temporary disabilities pension with a maximum lenght of four years. Obviously a compromise and quite ironic, as my condition only gets worse, not better. Yet, that was all they could give me and I was in many ways forced to reach a conclusion to this case, financial issues being what they are, terribly hard to overlook when you’re staring into an empty fridge. So I got my stuff worked out, sort of, for a time, it only took a couple years when it should have taken four months. I do not know if it is possible to describe how it is, living on the mercy of some names and titles without faces, waiting, wondering, worrying, counting pennies, for weeks, months and years, but quite frankly, it burns the joy of living out of your mind. Contrary to what some right-wing politicians and economical liberalists seem to think, it is not fun, you don’t do it because you want to, you do it because you have little or no other choice. Period.

Now, it turns out I’m not the only one that’s had problems with the social department over the last few years. Due to a massive reorganization process, planned to take somewhere around half a decade, there are also (not so surprisingly) massive practical, ideological and bureaucratic problems internally in the department. Something that does not only affect rare, special cases such as me, but a wide range of groups. The classic issues are cases/applications taking far beyond any reasonable time limits to reach a conclusion, money not getting wired when and where they are supposed to, a lot of general confusion, misinformation, papers getting lost and basically people in need of help, suffering. It’s sort of a problem when the very system that is in place to help people, generates more problems for those seeking help due to an inhumane bureaucratic process. Obviously this is not acceptable and over the past year, year and a half, reports in the media have become more and more critical and unambiguous, and more money and efforts have been poured into the social department(s) to rectify the issues. This report I mentioned at the beginning of this post, was sort of the final straw, complete and brutal criticism from an organ appointed by the parliament/government to evaluate the financial situation in the various departments, organs and businesses of the state. Frankly, reading it’s conclusions on the social department creates an interesting mental image of an elephant doing riverdance on top of the corpses of the politicians and bureaucrats responsible, pretty damn crushing. I am very pleased, not because this matters much for me, my case is after all, sort of closed, but I know there are tens of thousands of other people having major problems and struggling with this. There’s no doubt now, they have to sort it out, you can’t ignore a splinter in your eye the size of a giant 2000 year old  Redwood tree.

So, if you still haven’t fallen asleep from boredom, how on earth did I end up in that TV-news report? The day it all exploded I spent the entire day in a planning meeting for one of my volunteer jobs, this job is owned/run by the Norwegian Association For The Hard of Hearing (HLF). One of the participants in this meeting get a call from a formed employee, now working at the NRK. They’re looking for a handicapped person who’s spent a long time in queue with the social department, awaiting an answer to their application. I offer my help in finding one, thinking I’d find someone on Facebook easily. I was and is  pretty sure there’s several battling with the social dep. Unfortunately there’s not much time and I get no responses within reasonable time, so in the end I call the journalist and apologize that I could not find anyone, but I also mention that I’ve been through such a process recently. I quickly shave and try to find some half-decent clothes as I don’t have many, which is a concern when you don’t want to appear as a hobo. Due to a limited budget I mostly buy cheap, solid and “work” clothes.  A few minutes later I meet the  reporter and her camera-man in a nearby park and we’re on. I had no wish to appear on TV, I’m a pretty private person, but the decision was made easy due to the importance of this report and the need to have an Joe Sixpack giving the criticism a face. Excerpts from the interview was used twice that evening, both on the 19:00 and 23:00 news, but with slightly different points of view to the report. First one angled heavily on the criticism, second run more about the problems the applicants for benefits face when dealing with the social department.

Well that’s the story. I had hoped the interview would be run as a case on it’s own, but it’s hardly surprising that they try to squeeze all they can into a limited time-frame. I had some fairly heavy-hitting comments with good points that where not used, but all in all I did at least not make a total jackass out of myself which is obviously something you risk to do when going on TV. If you understand Norwegian here’s a direct link to the news-report in NRKs archives.

Direct link to the case on the 19:00 news, 22th of October ’09 (Probably need Internet Explorer for the video to work)

The single most defining element of my life, is (unfortunately) Usher Syndrome. This extremely rare genetic disease that I suffer from, is a thing that defines me even if I don’t want it to. The day I received the diagnose eventually changed my life forever and also my perception of a great many things. The nature of sorrow is one of them.

An eye affected by Usher Syndrome's eye disease. The white-yellow part with the black spots is the retina with dead cells.

I’m sure those of you that are yourself living with a permanent and serious diagnosis have an idea of what I speak of when I talk of sorrow. Yet, for you that don’t, I’ll try to explain.

Grief That Won’t Let Go

As human beings, loosing things we care for is a part of life. Most of us will have to endure parents and other relatives dying during our own lifespan. Also, we will see friends die all too young from stupid accidents, drugs or even war. Loved ones can and will forsake us for others and leave us scrambling in the dust, trying to cope with rejection and sometimes deception and trickery of the very worst kind. When someone we care for, is fond of and love, leave us, we feel sorrow and we grieve.

To carry on reading this post, it is important to realise that all sorrow is basically the same, mourning someone who dies, or a partner ditching you, is not much different. The fact that something is gone from your life is the key element, not what or whom. When your whole life get turned upside down from a serious diagnosis, you often have to change focus and plans in a quite drastic manner. It’s not uncommon to experience sorrow-reactions in such situations. Sorrow might be great, big and black, clouding everything, or the more manageable kind that leaves us sad and hurt, but still alive and well. No matter what flavour, it’s still sorrow.

Sorrow may lead you to react with denial, guilt, anger and self-destruction, it may render you incapable of functioning in daily life and kick off a serious depression. In some cases the symptoms of the sorrow even match several of the criteria for PTSD (Post Traumatic Stress Disorder – “shell shock, war weariness”). The psychologists have been researching sorrow for many years, and they probably understand sorrow better now than 20 or 30 years ago. Still, I’ve done a little reading into the subject, and it is somewhat frustrating, because primarily existing literature and articles about sorrow, deal with sorrow caused by loosing someone, not something. The techniques suggested for treating people with complicated sorrow don’t always seem very viable for dealing with “my kind”.

Just won't let go..

Regardless of strength and psychological know-how, most kinds of sorrow we experience in life, are the kind that eventually passes with time. Time heals all wounds they say, and they are mostly correct. Yet, even when realising that sorrow is sorrow, regardless of cause, there is a crucial difference between sorrows, at least in one aspect. There is one kind of sorrow never really leave you. I’m talking about the kind of sorrow you are constantly reminded of because you have to live with the initial cause of the sorrow for the rest of your life. Permanently nagging you, eventually getting old and worn, but still and always there. Sorrow that won’t let go.

Handling It?

The most important thing though, is not that you feel sorrow, but how you cope with it. You can lock it up, ignore it, drug yourself with alcohol or other unhealthy substances, but it will still be there. That leaves you with little choice except trying to find some way to actually face it and live with it. There is no manual, no “Coping with sorrow for Dummies”,  and even though there are others living, facing and dealing with similar reactions, they are few and far between. Also, they are often busy enough with themselves. The fact that grief is extremely personal and often hard to explain literally complicates the matter.

Personally, I’ve found no easy way out, though, I’ve tried. I’ve had progress, I’ve got somewhere and I feel wiser today, but nothing I do can change the fundamental facts of my medical situation. In a psychological perspective, maybe one day I will be able to say that “I’m OK” and really mean it, but I can’t see it happening anytime soon. You’ll see smiles on my face and hear me laugh, and I can for a moment feel all right. Yet, there’s always that shadow, the imprint a severe diagnosis can leave on a person.

I’ve talked to psychologists about this. Sorrow is something that often pop up in the line of work that psychologists do, so they have training and experience in dealing with the subject. Still, the funny thing is, they are not really much wiser than I am. Techniques for handling sorrow might be to try focus on something ahead and get people moving, or role-playing conversations with the deceased and visiting a grave. But, what is there to focus on for someone with a permanent diagnosis? What does it help to say “time heals all wounds” and other similar and often used sayings?

My Way

This is no doubt a difficult and complicated subject, both for those it concerns directly, as well as those that live with them and try to help them. Sorrow can manifest itself in many forms and shapes and there is no all-round solution. In the end it’s up to ourselves how to deal and live with it. Some find comfort in religion, others in therapy. Personally I’ve never felt much for religion, I’m an atheist and happy with my choice. I believe in humanity and our chance and ability to control our own lives, despite the chaos. Here, at the core of my personal beliefs I have one thing that I find helps me.

For me a simple and unmistakable fact always remains. I am a human being. That means I’m able to adapt to and cope with the extremes, if necessary. I know we’re a species that have climbed to the position we have on this planet because we are able to adapt to almost anything. We might not have a good time, yes merely even exist, but we have a strength within, called the “will to live”. This is the result of thousands and thousands of generations of survivors and everything comes together in one single fact, we don’t want to die. When we know and realise this, we’re once step closer to coping with our lives, and sorrow too. It’s up to ourselves to use our massive reserves of inherited potential, all the ingenuity, skill, understanding and more than anything, the will that we possess, to define and change our lives.

This is all on a psychological level. We, ourselves possess the ability to heal ourselves. Whatever means you seek to use to help yourself, therapy, beliefs, drugs… They are just things that may or may not get you to a point where you, yourself, use your mind to your own good. They are not the solution, you are the solution.

This is my way, I’m sure. It doesn’t cure the regret in my heart, but the knowledge and understanding gives me no option but to carry on. I wish to live, breathe, love, drink, eat, learn, laugh and cry, and the pain will put a damper on it, but it won’t stop it. Other people with other beliefs will not find this suitable at all, yet, I can only vouch for myself. Even then, I’d like to suggest you try and taste the old saying “when there is will there is a way” and think a bit about it.

Have you experiences with sorrow that you’d like to share? Feel free to use the contact form bellow. Anonymization is fully possible. Otherwise commenting this post itself is an option too.