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.

søndag 28. juli 2013

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”.

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