Current situation explained

Things are not well at home. Haven is a word i do not know, nor do i know the words home and peace when put together anymore. It's a long story, the one about me ending up back at the house where i once grew up, with my mother as my caretaker/nurse/personal assistant and a story that i will share with you one Blog entry at a time. Just thinking about starting a single text to tell the whole story in one single Blog entry, gives me nightmares. It's just not doable, at least not without mushing it up into a senseless piece of jibber jabber anyhow. I wouldn't be able to concentrate enough to know what i'd already written/told and what i hadn't. It's a story filled with a lot of pain, misery, mistakes and misguided attempts at helping and worthy to be told right and not in some rushed Blog entry in the middle of the night.

I'm having a hard time deciding on in what structure i should tell the story, but you'll just have to bare with me as i start in this Blog entry and hopefully i'll be able to not mush everything together to much.

The present.

I live with my mother. I have my own room on the top floor out of two floors and i've hardly ever left it since i came home from those horrible years of bouncing around within the Swedish healthcare machine. Conclusion? The machine is broken. Oh, it's still running that's for sure, but it sure isn't going where it's supposed to.

Well, back to the present. I eat, sleep, wash and do my "bathroom" visits in the confines of my bed. I've even had a custom desk made that hold my computer and can roll over my bed so that i can manage to have some contact with the outside world. I can guarantee you one thing; if i ever get to leave this bed and get through all of this, i'll sleep on the floor for the rest of my life. I hate beds. One is my prison. I know, my prison is my illness, but i see the bed as the symbol of my imprisonment - ergo i hate beds. The room has gotten smaller for each year that has passed and soon it'll squash me if i do not find a way to leave. Leaving, however, is a hell of a lot harder then it sounds. For me at least. You see, i can't just stand up and walk away when confronted with a situation that's not to my liking or has a negative effect on my health. I can do nothing but lay there and take it head-on. May it have been insults, physical or mental abuse during my bouncing around in Swedish healthcare or just the plain old frustration of hearing young healthy people my age having the time of their lives outside while i'm stuck in here, in the ever shrinking room. This causes a problem when trying to "stand on your own legs" (not sure if pun was intended, let me think about it) as you have no income to speak of save for the minimum living standard money they pay out to people like me who for one reason or another had to "retire" early but in my case i got sick so young that i never had a chance to make enough money to actually get something even remotely impressive (to say the very least) out of that early retirement. For situations like mine, handicapped person seeking own living quarters, the part of the state where you live in is obligated to provide you with a handicap-adjusted apartment. Well, that too isn't as easy and a sure of a thing as it may sound. Just like everything in my life since i got sick.

The LSS staff (LSS = Law about Support and Service here in Sweden, but let's call them "it's-their-job-to-inform-me-of-what-rights-and-options-i-have-in-all-of-this guides") in the part of the state where i live that are assigned to me do not quite seem to see it fit to prioritize a 23 year young man over 80 year old men when it comes to assigning the handicap-adjusted apartments they have. I'm not saying i think i'm more "worthy" of an apartment then said older gentlemen, but when they string me along with excuses for months and months (and months), saying they're doing everything they can for me only to see that they're in fact skipping me for some mysterious reason and giving them to...said older gentlemen. Why? Well, after a string of communication with the LSS guides via email it seems that they are so economically comfortable with me living at home being "taken care" of by my mother and them because of that fact not having to hire multiple personal assistants (like they would have to if i moved to live on my own), that they are actually skipping me on purpose. Of course they didn't say that out loud, but it doesn't take a genius to figure that out. Especially after receiving answers both avoiding my questions and ducking them alltogether. They're just not interested in helping me out in that department, despite me having thoroughly explained to them that the situation for both me AND my mother is unacceptable to say the very least with my already rocky health deteriorating as a direct result to the unstable situation at home. What said "unstable situation" referrs to, is an incredibly strained relationship between me and my mother developed from having had a very much other-then mother-son relationship with her during all these years of personal hell. She's been with me every step, whether it's been to my misfortune or later on in all of this, my fortune - she's been there, having gone through a lot of hard times her self. Why misfortune, you say? Well, that's another part of the story as we're currently in present times still and i wouldn't want to mush up the story now would i.

Back to the LSS people. They just do not see how a 23 year young (and i say young to illustrate a point, but i guess you've fiured that out already) man could be worth aaaaall that effort to give him a chance at life in comparison to the elderly that REALLY need those handicap-adjusted apartments. Hey, forget the moral obligation here, it's their JOBS to help me out with a shot at at least a decent life whether i'm to...young?! or not. Jesus H Chist and his discipl...well you get the point. Has the world gone mad or is it just that you see all that's wrong with it when you need it's help, it's humbleness and love? Well, either way i'm in for a doozy...again. The fun never ends.


Over and out for now, take care of yourselves and please, for cryin' out loud, enjoy the little things in life like just being able to jump out of bed in the morning and straight into a shower. Oh god i miss showers. Running water on me. And the sun in my face. And walking. You gotta love how being in a situation like this, all robbed of the things you oh so took for granted, puts things in perspective. If i ever get out of this, you can rest assured i'll do my very best to try and not take the precious gift of life for granted. As it is now, that's somewhat hard and many times when having been all alone in the healthcare machine have i wished myself no longer due to experiences with the combination of severe pain and a total disregard for treating another human being with respect as well as dignity. There'll be many horror stories in this Blog, that's for sure.

Money? Popularity? Finding the one true love? Sure, those are nice, but i think i'd rather have my health.

Later.