About the blog:

This blog is about my life as a young, handicapped man in Norway. These are my thoughts, my fears, memories and joys. I hope this blog can be of interest to those out there With Duchenne's Muscular Dystrophy, their friends, families or those of you who are just curious! I'm happy to share my story and my musings of life with you.

tirsdag 23. juli 2013

Home



I’ve always liked my home; it’s green and peaceful here, at least in the summertime. I could do just fine without snow and winter, but sadly this is Norway. This is apparently one of the best countries to live, and I can see that to some degree, we have a good economy, healthcare and so on, many countries probably envy us all this. So, maybe that’s why we get the curse of winter, to create a balance of some sort. I’m not saying Norway is perfect, who is, right? There are people who love winter, probably easier when you don’t roll around on 4 wheels, trying to avoid sliding into a tree or a wall. My chair slipped on the ice once and slammed into the wall, my foot took most of the impact there, but I digress.

 My apartment has everything I need, all on one floor. The kitchen is a room I rarely visit, but my assistants can get a bite to eat, do the dishes and other chores I can’t do myself. You might wonder, if I could do these boring tasks, would I? I like to believe I would. I believe such daily chores help pass the time. Sure, it might seem trivial to you, but at the end of the day you can go to bed with a sense of mastery. You’ve accomplished your daily quests! 500 points to you! Maybe we can learn things from gaming after all? I doubt people reward themselves enough, we are great at taking things for granted in today’s society. Give yourself some credit once in a while, just a little bit and you might feel better when you do the dishes next time.

 We’ll sum up the bathroom real quick. Shower, sink, high tech toilet… Yes, it is quite fancy, it actually cleans you. In the future they might even talk! A disturbing thought. As you might guess, my apartment is full of gadgets. The shower, toilet, toilet chairs, the mattress on my bed fills itself with air… And so on. I can’t really get into the bathroom anymore, but it’s nice to have. When my breathing was better I would get rolled into the shower. That was nice, feeling the warm water wash over you. I guess I miss that feeling sometimes.

 The room I spend the most time in is the living room, that is where the action is and not in the bedroom! In the living room I have my computer, wide screen TV, some nice furniture and the things that carry value to me. It’s where I write this blog from and also where I can escape into the world of gaming or movies. Looking around me I feel proud of what I have. For a handicapped person I have a pretty good life, even if I sometimes have to fight for my rights. Bureaucrats, they never understand, but I won’t get into that just now.

At the end of the night, which is quite late or early as I go to bed at around half past three in the morning, I go to rest. It’s a bad habit, but the internet never sleeps. Besides, I’ve grown used to it now, hard to turn it around. The bedroom has a soothing green color, deep, easy on the eyes. My second breathing machine can be found here, standing faithfully by the bed. I switch when I get in bed, letting the chair mounted machine rest a bit. Then the lights are turned off and I drift off. They say I talk in my sleep, sometimes I scream as I think I can’t breathe. Luckily there’s always an assistant nearby to soothe me when this happens. I probably dream, like everybody else, but I very rarely remember. Not even fragments of the dream.

 I get up at around half past two in the afternoon. I like to sleep in, even if some find it a bit extreme. Then again, I have no job to go to; nowhere I should be, so I sleep as long as I wish. Figured I deserve that much. On that note, getting me to a doctor appointment at ten in the morning is never amusing as I am TIRED! I just want my pillow… Oh well, I can endure that once in a while, it’s a matter of my own health after all. I might have a condition, but I’m here to stay and if the doctors can help keep me healthy I’ll get up early.

 Today I spent hours outside, in my lovely little garden. I like to sit out there on sunny days, listening to the radio and just let my thoughts fly. Sometimes people come by, like my uncle on his black motorbike. That thing is a beauty. Heh, good thing I’m chained to this wheelchair or I’d be out giving my mother a heart attack thundering down the road on a motorbike of my own! It’s always nice seeing my uncle. He’s a big man, with a heart of gold and like me; he is a bit of a thinker. He tells me I’ll be back some day with a stronger body and that we’d meet again. It’s a lovely thought, that we’re only here temporarily before our souls find new bodies. I’ve certainly learned a lot these past 24 years, but guess there is much more to be learned. I hope my uncle is right, but I’m skeptical by nature.



To end this entry I’ll just leave you with this saying. “Home is where the heart is”.

5 kommentarer:

  1. Svar
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  2. I'm loving this. No wonder how many friends he created. It's funny, reflective, respectful, wise... I agree, I'm also skeptical but we both agree that the bathroom should be a quiet place, a least if nobody is there.

    A little bit of self-reflection about...

    I was called, locally, a genius mainly because of my behaviour, specially my motor coordination. I did physically what most people think is not achievable, too danger or impossible and it was just my daily locomotion. Maybe because I never fit in the culture of my country, I couldn't give a chance. Is quite common here when some one highlights alone, like a flower on asphalt, this person becomes a target for compliments and swearing, a lot of swearing. ^^

    There are many ways to take this idea "home is where the heart is". In my case my heart wasn't bounded to the factual reality of the social tissue and cultural main believes that is most common where I was born and live my whole life. By my personality, I usually don't take seriously any compliment, I think this have to do with my childhood, when I have so much easy compliments and did figure out that they were like protocols, maybe a way from a adult to pass a good impression that the child is in the right way and I realise that most of the compliments wasn't about me, they were just superficial. So even today I normally forget the compliments that I hear, but remember the critics.

    Is interesting, at least how I understand, that complements and swear sometimes are just two sides of the same coin, the implausibility of indifference. Even understanding that sometimes people can be very rude, unpleasant and ignorant, the swearing is just a way to show a kind of interest without self compromise, a kind of coward demonstration of interest (of course, some people are just sadists or ignorant but I think is the minority).

    But anyway, why I'm explaining this now? Maybe because the compromise that I feel from the text, this warm, friendly care that I feel from Mat text is exactly what my personality always had, but for some reason, I couldn't accept the way that people make the bonds, the superficiality, the ignorance, the easy acceptance of the curiosity lack, the low relevance to the ethics, so on and lots of swearings. Now I'm a kind of the opposite to Mat, I isolate myself. I could even say that I almost don't have any friend, at least I don't talk to anyone. My dream now, is to go to a country that I can relate, that I can once again gather people around me and push to make a difference in the world. Mat found his two homes that were connected. I still need to create my own home and before that I need to discover where could be my new home. Many countries fits the way I want to live, including (or specially) the Nordic countries as far I searched about. But in the end, after all my experiences I'm really feeling that home is inside us and is quit tricky to understand that home is not like a building that protects us from the outside, but rather a building that protects us from the inside. We, learning animals, need that "home" to live together and live with ourselves.

    I wish that I could make this comment 7 years ago to read his opinion. But anyway, life is a blowing, a beautiful, warm and funny blowing.

    SvarSlett
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  4. Descansa en paz Ibelin siempre estarás en nuestros corazones, simplemente Gracias!
    Fernando T
    desde Paraguay

    SvarSlett