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.
In my working career I managed to work my way up the ladder to become a Chief IT Operational Manager for a medium size Internet Programming / Consulting company in the dotcom years. (Which in Norway counts about 50 – 60 heads)
I never let my disability define me… Hmm, I wanted to do what everyone want to do.
By not letting my disability define me, I simultaneously did a very normal thing. It’s called self-denial.
Theres two sides to this; one thing is to not define myself as a disabled person (whichs is mostly a good thing), the other thing is to define myself as a person with NO disability whatsoever (which is the self-denial part). That prodigy has caught up with me since 2001 on up to today.
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 now am 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….