BBQ

I sometimes think about fate. Why do children die? Why do some live and others don’t? Why was I born with this condition? Is everything in this universe truly as random as some say? Are we guided by something unseen, by fate? If so, I’m not sure I understand the concept. I do know one thing though, I was born and I am here. Heh, sometimes I wonder though, what if one of the others eggs were chosen? Would this egg become s normal boy? Maybe. It’s a foolish thought. I shouldn’t start going down that road again. I’m here, I’ve been here for 24 years now and I intend to stay for many years to come. Fate willing.

I was invited to a family barbecue by my uncle, the large man with the heart of gold. He has a large flat property and everything on one floor. It’s a perfect house for me! My grandfather was there as well, about 85 years old now. I had not seen him in a long time now; he’s too frail to visit me anymore sadly. Time is a strange thing. Every time I see him he’s aged so much. He made his way towards me, on short, unsteady steps. He finds support in his cane as he leans in to give me a hug. I could see the tears in the old man’s eyes, he misses his grandson. It’s not often I’ve seen him cry, he’s always been so tough, former policeman and everything. It was a bit overwhelming and I was unsure whether to cry as well or comfort him. I settled on the second option, but it was all very touching.

This man used to drive me to kindergarten, school, and watch over me and my sister when our parents were away. I owe him my utmost respect and admiration. Sure, he’s been a strange guy as well; he can say the craziest things. My mother usually gets annoyed by her father’s many outbursts, but I just laugh it off. He’s old, if he wants to be an original I say let him. I brought an assistant to the barbecue and to her my grandfather turns and says; “We have an agreement, him and I… If he dies first I’ll speak in his funeral, and if I die first he’ll speak in mine”. He’s been saying this for maybe about ten years now, but I want to honor this request. I’ll speak for his memory, as I’ll never forget him.

There were several others at the party, my grandmother, cousins and everything. My sister brought her boyfriend, they seem very happy together. As the evening progressed it was time for fun and games. We played croquet in the garden; this resulted in a lot of laughter, especially when my mother took the field! She’s probably one of the funniest people I know, she spreads joy when she’s in a good mood. I was on her team and even though we lost I had an amazing time. I think my mother and I can agree on one point. You don’t have to win as long as you’re having a good time.

For a few moments it was like stepping into a typical American neighborhood; a large barbecue, a warm social atmosphere, games in the garden and in the corner of my eyes I could see an American football flying. My cousins were tossing it about, just like you’d expect. I found it fascinating and enjoyable. Guess living by an army base run by Americans you’re bound to get affected somehow. They spent several years on one down in Germany. I was of course concerned about my breathing machine as this was the first real trip with the new one. This time however I was prepared! I made sure to recharge every chance I got, even brought some food of my own. I killed two birds with one stone and as mentioned before in this blog, I always need to plan ahead, be prepared.

As we were driving home my father remembered something vital! We had forgotten my food device; I’ll just call it that. It pretty much is a pump, pumping liquid food into my feeding tube. It’s practical for me as chewing gets tiresome. It has changed my life as I was near starvation in the past, skin and bones. Now I’m stronger and gained enough weight to function well. Would be a bit odd to starve in a country such as this! Anyhow, we picked it up and made our way home, without any stops at the local gas stations.

To close this entry I’d like to type a few words about family. That sounded a bit Mafia when I think about it… Oh well! To me family is of course very important, they’ve always had my back no matter what. It doesn’t matter to them that I’m different, they still love me. My mother, father, everyone. You people have enriched my life and I have no idea where I’d be without you. Heh, I get a bit carried away here, but I mean every word. We all need somebody to lean on, right?

Creative sollutions

I’m always a bit sad this time of the year. It’s august and in Norway that means the summer is nearing its end. I’ve always been a child of summer, it means life to me. You can go outside without having to wrap yourself up in thick, heavy clothes. There is no ice to slip on, like that unfortunate incident I once had with a wall. To be a bit dramatic, to me winter is death. Many thinkers and poets before me seem to agree on this view. The leaves fall, most animals go into hiding, and some birds even flee this frozen wasteland. It’s just quiet and dead. The best thing about winter? It ends.

Well, august has surprised me in the past as well. We might still get a few days of summer! We deserve that. Now, some might be curious about what else I do on my spare time, well, fulltime in my case. I enjoy a good movie, different types really. Sci-fi, action, comedy, drama… I find horror movies a bit silly though. “Don’t go in there! No! Don’t… Great, now the vampire got you… They never listen!” You get the idea. Over the years I have gained a rather impressive collection. However, the time of the DVD is soon past, just like summer. However, Netflix and other movie services seem pretty great and easy too.

 Then there is of course gaming, I’ve touched this subject several times already in this blog, but now I’ll write a bit of the practical aspect. You see, using a gaming device or computer has become more difficult the last few years, so I had to get creative. Holding the Xbox controller was the first issue, there’s always one button I can’t reach! Of course this button has to be used at some point in every game. “Throw a grenade!” “I can’t! I can punch the car if that helps you guys?” it really gets frustrating eventually. I never really found a solution to that issue. Maybe someone else out there have any bright ideas? I’d love to hear it.

One of my former assistants became a very good friend of mine. He’s 40, I’m 24 but we’re both gamers! Easy to guess what we spent the night doing, shooting poor aliens and other things online. It’s different when your friend is sitting next to you while gaming. We laugh, joke, and talk about guy stuff and nerdy things like superheroes and the like. Either way, he came up with a nice way to hold the controller. We built our own gaming table, consisting of a pillow, a towel and a book. We just rest the controller on top and I quickly get a better hold. The buttons are easier to reach, all but one cursed button. Oh well, who needs grenades when I can hit you with this stick!

Using a mouse and a keyboard also became a challenge for me and this was harder to solve. I had to send a mail and inform some people of the problem. That’s how I got in touch with two creative guys from a company that specialized in such tools. They say it’s important that the buttons and switches come to the user, not the other way around. This is very true! I can’t reach every button, so they simply have to move the buttons to me. Finally someone understood this fact! They came by and we discussed a possible solution. We quickly came up with a genius plan. They attached a series of buttons to a special table, 12 of them where most surround my mouse. I can program these buttons to serve any purpose I like. It changed my computer use forever. I can finally play games I could only dream of before. I owe those two guys a lot.

There are as you understand many obstacles in my way, but there are solutions to most things if you just keep your mind open to it. Be creative! I know, many times I just wanted to give up, nothing ever works, right? Wrong. I’ve met far too many doctors and ergonomists who fail to think creative. They just see one solution and they stick to that. Now, I’m sure that solution works for some, but we are all different. My needs are different from yours. As you might have guessed I’ve always loved creative people. I’m amazed by the beauty humans are able to create around them. Some artists are afraid to show off their work, thinking they’re not good enough. To them I want to say, stop doubting yourself. Sometimes you have to jump in, no matter how scary it might seem. You might be pleasantly surprise.

  

I try to be creative sometimes and one of those times; this is what came out of it:

Love

It was a peaceful, warm evening in Azeroth, a few friends sitting around a campfire enjoying some drinks and good stories. I vaguely remember who I was there with; I remember one of them quite well. He used to play a dwarf character and was a close friend of Ibelin. A good thing about virtual beer is that you don’t get drunk, you just pretend you do. It must sound absurd, but a fun challenge for an actor or role-player. Anyhow, while we were sitting there a dark haired, mysterious beauty comes out from the woods and joins us by the fire. I’m not sure how it happened but she started teasing and flirting with my character, and I liked it. In real life I was 17 at the time, no idea how to even approach a girl, being handicapped does things to your confidence.

 In this other world a girl wouldn’t see a wheelchair or anything different. They would get my soul, heart and mind, conveniently placed in a handsome, strong body, luckily pretty much every character in this virtual world look great. Many might find this silly, but at least looks don’t matter much anymore, it’s all about personality. So, the attractive girl kept confusing me as I wasn’t used to being flirted with like that. There was something very exciting about her, her humor, the way she acted, how she would express herself. I was sold. Suddenly she kissed my cheek and vanished into the woods. It was just a virtual kiss, but boy I could almost feel it. My character just sat there, clueless of what to do next.

 My dwarf friend told me to go after her, she was clearly into me. Wait? No, no, not me right? Eventually Ibelin got up and with uncertainty he followed the mysterious woman into the woods. That’s how it began, they quickly became a couple and it was the closest thing I’ve ever been to a crush in my entire life. We exchanged mails and started communicating outside the game as well. We stayed in touch for a few years, through our late teens. She did have a boyfriend and she did live in another country, so part of me knew nothing more would ever happen. I never told her about my feelings and we remained good friends, until we lost contact sadly. I still think of her, weird how it is with your first crush. I remember thinking, if only… If only I wasn’t handicapped! It was always my excuse.

 

Love has always been a tricky subject for me; it feels like it’s just not meant for me. I watch my family grow, old friends finding love, some get married and I’m still where I always was. I try my best not to think about it, but you know how it is sometimes. Of course, I’m very happy for my friends and family, it’s not that. I just sometimes wonder how it would be. In World of Warcraft I’ve flirted and been with several women, but it can never be the same. Online I can at least do all the things I want, hold her, and kiss her without having to plan everything. Wheelchairs and all that tend to make things difficult.

 They say I could be a father, in theory that’s possible, but then again, what would the point be? These dark thoughts just try to drag me down, making excuses. I could father a soccer team and have them carry me around. It’s a funny image. I doubt that will ever happen, but if I should ever fall in love and she really wanted to, who knows? One shouldn’t close doors too soon; you never know who might come in. I went to my cousin’s wedding (mother’s side) a few months ago, it was amazing. They had picked a lovely spot for the dinner and party. Only thing I didn’t like is that I had to dress up! I hate suits, vest, that stiff white shirt… But sometimes sacrifices must be made! I wonder if there are white, soft t-shirts I could use instead… It was nice seeing two families get together and celebrate a loving couple’s big day. There were some nice speeches, always been a fan of those, call me sentimental. As the evening progressed it was finally time to hit the dance floor, music pumping, making me want to show off some of my moves.

 How do you dance in a wheelchair? It’s not too hard, just work that joystick. Turn, turn, right, right, left, left, spin, forward, forward, backward, stop, spin. You get the idea, it is actually quite fun! The others at the party thought it was pretty great at least. One of my uncles, on my father’s side who wasn’t a part of this wedding, had agreed to drive me and my assistant home from the party. It was half past eleven and after saying our goodbyes we drove off into the night. Everything was going great, until my breathing machine started beeping loudly.

I’ve always hated that noise! It was telling us it needed to be recharged, as fast as possible. We were in the middle of nowhere, so we had to find a gas station before the machine would shut down. I freaked out a bit, but luckily we found a gas station, rushed in and plugged me in between the hotdog and the bagel stand. So, spent 30 minutes or so at a gas station, nice to see what they do in the middle of the night. I wouldn’t want their job, but at least they didn’t mind me recharging my batteries. It’s funny, with me that’s not just a figure of speech, I actually do have to recharge my batteries, literally.

 To get back on topic here: I have no idea what the future might bring, but hoping for the best. I’m happy for my sister today; she’s been with her boyfriend for a year now. I love her and my family to bits, and perhaps that is enough too? There are many kinds of love after all. Hopefully there will be more weddings in the future; I need to hit that dance floor again!