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.

onsdag 11. desember 2013

December.

Here we are again, another year slowly nearing its end. It’s a strange time for me these last few years. I’ve grown weaker and can’t even eat much of the delicious Christmas dinner like I used to. Oh, how I miss those flavors! It feels odd to just watch the family eat, but that’s just how it is, at least we’re together and I’m very thankful for that. Things used to be different though, like when I was a kid everything about December was exciting! Every day we’d open another hatch of the calendar and get small gifts or treats before breakfast. We waited and waited, Christmas Eve just couldn’t come soon enough. I often wish I could turn back time. To a period where magic still existed, where December was more than just a cold, dark month.

Several years ago, I was in 9th grade, 15 years old or so. Thinking about it, that’s nine years ago now. Time passes by as they say. It was the last day of school before the holidays, a week or two before Christmas. It was a very cold December afternoon and my assistants were ill or something, so during my school day people had been filling in for them. However, when it was time to wait or the bus home, nobody was there to put on my jacket. It was freezing as the bus pulled over to pick me up. I pushed the door open by nudging it with my wheelchair. I tried to hurry into the bus, but I could feel the cold biting into my body. As we drove home I already knew I was going to get sick.

Sure enough, the very next day my chest was making awful wheezing noises, my lungs filling up with who knows what. I couldn’t breathe right when lying down, coughing heavily. All this was before I had any breathing aid and it would turn rather nasty as we were about to experience. My parents were away at a Christmas party and my grandparents were watching my sister and I. Sadly my condition didn’t seem to improve and my mother had to come back home. I had never experienced anything like this, mucus filling up most of your lungs, like you were struggling not to drown with every breath you took.

We called the doctor for advice on what we should do. They suggested we’d try to go to bed, as it was quite late and if that didn’t help we should phone for an ambulance. My poor mother put out a mattress on my floor to keep an eye on me, but as soon as my head hit the pillow I choked. I couldn’t breathe and I started trashing about in panic. My mother ripped me up and hit me in the back, making me breathe once more. That was the final straw; I needed medical attention as soon as possible.

The ambulance came in a hurry luckily, but when they put me on the stretcher I started choking once more. I remember the black winter sky above me, snow falling down and my mother’s cries of panic as I passed out before I got to the ambulance. It was terrifying and surreal at the same time. At one point I remember thinking “This is it, this is the end”. While unconscious I could hear the echoes of those around me, the paramedics, the doctor and of course my mother. It was like I was caught between life and death. I’m very skeptical when it comes to religion, but for some reason everything was white and cold, like the mountains of the Himalayas. It was covered in ice and snow, far away from everything else. It might have been my mind playing tricks on me, but that was where I was.

Finally my eyes opened in the emergency room, gasping in relief as the doctors had drained several liters of mucus, no wonder I was choking. Right after this I fell asleep, my body exhausted. It wasn’t over there though and I was at the hospital for a while. Every day I would choke up and they would stick tubes down my throat to get it all out. At one point it got so bad they had to give me extra oxygen, straight down my throat. Talking was impossible and on top of that it wasn’t programmed correctly. Luckily they removed it the next day, allowing me to breathe and talk properly again. After a long week in hell we managed to convince them o let me go home for Christmas.


They were a bit skeptical, but I seemed to be in a good health, no more mucus or risks of choking. They did however make sure I received my first breathing machines. They were almost shocked I didn’t have a few already! Well, nobody told us about it until it was too late. Typical. December 23rd I was home again! My sister gave me a hug and we had the most beautiful Christmas tree in the living room. All this was worth fighting for, death would have to wait. In the end it’s not about the presents, or the food for that matter, it’s all about being together, share, care and just have a good time in this dark, cold month we call December.