Growing up

Most of us have fond memories of our childhoods, learning to ride a bike, jumping in muddy puddles without a care in the world. If a grown man ran about jumping in puddles while giggling happily I’m certain he would get a few funny looks, or a strait jacket. I have many fond memories as well from my upbringing. Ah, childhood, where I was still at my best. I could walk until I was eight years old or so, but in spite of that I was still fairly strong. I could wheel myself around, sit in a normal chair without falling over, and best of all I could breathe perfectly well! No stupid masks and machines.

 I was born in 1989, just in time to avoid most of the 80’s. Well, there was some sweet music from that decade, but the fashion and the style was terrible, to me anyhow. Shoulder pads, strange hairdos and those dreaded pastel colors. I remember I had a dresser with drawers painted turquoise and purple! Oh well, I know some liked this style for reasons that are beyond me. It was the year the Berlin Wall crumbled, not that I recall anything about that. I like that thought, as if the wall had to come down because I would be born.

 The first years of my life was spent in a row house, I believe that is the English term. Small houses all connected on a row. Once it was clear I had the condition I have my parents realized we needed more space. There were wheelchairs and other things waiting in the future. When you’re born with a condition like mine it’s very important to plan ahead, prepare yourself for something that might not come in years, because it will come. I believe this attitude has saved my life on many occasion, I’ve gotten help before it’s too late. So, at the age of five we all moved to our current home. Me, my sister, father and mother and of course our dog at the time: Blue. I feel it was the best choice they could have made for me, as I’ve expressed before, I love my home.

 I started school shortly after we moved, it was quite exciting and the primary school here was and is still amazing. When the weather is nice I enjoy an evening walk, or drive around my old school. Just to see what’s changed and to think back. Losing the ability to walk was one of the darkest days I remember, but it had a few perks. In wintertime I could stay inside and play computer games or play with toys while the other kids were out there freezing their fingers off. However, staying inside with only adults to keep me company did get lonely, so I was allowed to pick two classmates who could stay inside with me. This ended up having an unintended side effect.

 There were two boys I used to play with, thinking they were my friends and that I could depend on them. Sadly I think they took advantage of my condition instead, they could stay inside, and all they had to do was play with me. How sad is that? Kids can be cruel sometimes, often without realizing. I learned that the hard way. When I truly needed them, they were never there. When I was a bit older I kept a bit to myself on the playground. I had just gotten my first real electrical wheelchair. It looked more like a car, with 4 large tires it was built for almost all terrain, quite impressive, huh? It was called the “Exterior” and we had many adventures together.

 That chair was so cool that when I drove through the schoolyard a younger kid would roll up next to me on his tricycle, look up at me with big eyes and ask; “Do you want to trade?”. If only he knew what exactly he was asking. Sure, I’d gladly trade you my chair, it comes with a muscular condition. Then I’d happily roll away on my brand new tricycle, into the sunset. No, no, I wouldn’t wish that on the poor kid, so I laughed it off and drove on. It was a cute, innocent question after all, a question I’ll never forget.

 I found salvation in my game boy, just sit there for hours and dream away as Super Mario jumped on mushrooms, collecting coins. Of course I couldn’t hide in that little device all the time and sometimes I just felt like being alone. I drove to the far reaches of the schoolyard, up a small hill. Then I stopped and gazed out over the yard, watching kids play, climb trees, build castles in the sand, ride bikes and use the swing set, all the things I could no longer do. That’s when the tears come, in moments like that. Life can be unfair at times and even if I try my best to keep positive it will always be there, buried within my very soul.

 After this secondary school went alright, even if I was secluding myself more and more, retreating from the social scene a bit. I decided to focus on schoolwork, be the best I can be there, show the world I’m no fool at least. I believe I succeeded. Sadly I had no idea how to make new friends or how to keep them. There were a few in my teenage years at school, but lost contact with them now. I continued getting good grades, in most subjects, except math! As you might have guessed, terrible subject. High School was a bit rougher socially, I wasn’t bullied or anything, but I felt like an outsider, and some of that was my own fault.

 In high school there were parties, attractive girls, mopeds! So many things a boy at 17 desired, but they were all just dreams, things beyond my reach. I would drive around the parking lot, admiring the mopeds and motorbikes, even the scooters I envied. The idea of driving yourself to school instead of waiting on a special, green bus was so alluring to me. When the bell rang I was ripped out of my fantasy, typical, just as I was about to pick up the cutest girl in school and drive some place romantic. Oh well, dreams are nice that way, you can always visit again.

 I graduated with flying colors, beating most of my classmates. I was among the best, but I felt so lonely up there. There were so many things I had missed out on, friends I could have made if I had just forced myself to be more social. I guess I’ll always be a bit shy that way, but as they say, it’s never too late to change. So, in conclusion, did I have a good time growing up? In spite of all the hardships I’ve faced I will have to say yes. I’m happy with how my family raised me, how I was looked after. I’m grateful to be alive and I have many good memories as well. However, I can’t forget the bad things; they have made me the man I am today. It has taught me a lot. There is only one quote fit to end this entry, it’s from a song, from the 80¨s even!

 “When the going gets tough, the tough gets going”.

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”.

My escape

Sometimes we all want to escape our ordinary, tiresome lives and just be. We find escape routes in various places, books, movies, music, sports, and so on. You can imagine my need to escape the hard facts of life. I’m trapped in a shell that can’t sustain me very well. My armor is broken. Guess I feel a bit like Ironman when his high tech suit loses all power and he just stands around like a statue hoping someone will let him out. Super hero reference there, couldn’t help myself, being the nerd that I am.

 To clarify: there are so many things I want to do, but my chains always pull me back. Luckily, I have found my escape, and it’s not too uncommon today. My great escape is gaming. I boot up the computer, get into position and then I leave this world. It’s not a screen, it’s a gateway to wherever your heart desires. I spend most of my time in a little place called Azeroth, familiar name to some, I’m sure. In there my handicap doesn’t matter, my chains are broken and I can be whoever I want to be. In there I feel normal.

 In Azeroth I take on different forms, one day I’m Ibelin Redmoore, famed detective and nobleman. He fights forces of evil, flirts with women and makes friends and enemies wherever he goes. I could go on and on about this avatar I created, but best save some for later, right? The next day I might be in a more upbeat mood and I take on the hat of Jerome Walker, a western adventurer and gunslinger with a Texan accent and a perfect aim. He’s a bit of a joker, never takes life too seriously and likes a good party with his friends.




Ibelin Redmoore.

Jerome Walker.

 


















Jerome and Ibelin are expansions of myself, different parts of me. Ibelin was my first successful role-playing character in a game; he’s been with me the past 7 years or so now. Time flies, huh? Ibelin has found love, been drunk, messed up badly a few times, but he dusts himself off and moves on. In real life I need to keep positive, fight the hardships and emerge with a smile on my lips. Too many guys with Duchennes have fallen prey to hopelessness and negativity; I wish I could have warned some of them.

 There are times I just want to break down and cry, sometimes I crumble, but like Ibelin I’ll always rise again. There is another super hero reference coming, just so you know! I find it fitting. After falling into a dark well full of bats as a kid, a young Bruce Wayne remembers something wise his father once told him. “Why do we fall, Bruce? So we can learn to pick ourselves up again”. This line is true in so many ways to me; the writers really got it spot on. I’ve fallen more times than I can remember, but here I am, still breathing and I will continue to do so.

Plastic bag

Have you ever tried breathing into a plastic bag? If you have, you might agree that it’s not exactly comfortable. The air is trapped, you struggle and then… Panic kicks in, you hyperventilate. Finally you get the bag off and you can once more breathe freely. Now, you may ask why on Earth this guy opens his first blog by writing about plastic bags and hopefully the answer will come! Guess I best give a brief introduction of myself.

 I’m a 24 old man from Norway; I have a lovely apartment and a loving family nearby. I don’t work as I don’t need to (lucky bugger some might think), I have my own reasons for this. I’ve studied and consider myself a rather bright guy, just keep me away from math! Those numbers hate me, or is it me who hate those numbers? My passion is gaming, movies, music, good friends and good discussions. I also enjoy a good quiz! Suddenly this sounds like a contact add, soon I’ll write about long walks on the beach and how great I am at listening… No, you can relax. We won’t go there in this entry.

 So, as you see I sound pretty normal, and guess I am. My mind, heart and soul are very much present. I was born with a muscular disease known as Duchennes Muscular Dystrophy. It slowly reduces my muscles making me gradually weaker. I could walk once, but now I depend on a wheelchair. I can of course talk and live a relatively active life, but still, my body is starting to feel more and more like a prison, holding me back. There, good we got that out of the way.

 Now, to the plastic bag reference. 4 weeks or so ago I had to replace my “breathing aid machines”. You see, the past 5 years breathing on my own has started to get heavy on my weakened muscles, but thank… Science for science, right? I’ve had an amazing little machine the past 4 years, called the Legendair, awesome name too. It simply helped me breathe in, nothing more. I breathe out just fine, but it’s nice taking a good, deep breath. Sadly the days of Legendair came to an end as it was no longer in production. We had to find a new model, fast, according to the doctors. I tend to listen to the doctors.

 Legendair was out, and in came a modern little thing called Elisee. The sad thing is that Elisee needed to be adjusted, so to the hospital I was sent. They put the new machine on and guess how it felt like? Like breathing in a plastic bag. It was as if someone had replaced my lounges, I struggled heavily and they kept adjusting. Sometimes it got better, other times it got worse. I couldn’t sleep as the panic got to me. This madness carried on for about two weeks and I thought it would be the end of me.

 Now, weeks later I can happily say I made it, the machines feel normal now and I can carry on with my life. This was one of the hardest things I’ve been through, even if I’ve been through a lot. Surgeries and the works, but those are tales for other times. I’ll try to keep this blog going, so stay tuned and if you ever breathe into a plastic bag, think of me.