This entry might be the most important thing you will ever read here. On the 22 of October 2002 I feel I experienced the worst day in my life so far. I went with my parents to Oslo. I had a policlinic appointment to go see a doctor at the new Rikshospital, that bears the resemblance of a train or aeroplane station. I have never been so disappointed my whole life. I have been in and out of hospitals since I were little. I have taken cancer medication and things you wouldn't want to know for a condition that has nothing to do with cancer. I dont want to complain or become too personal here, that's why I've never written much about this. Maybe it's time for a change. Politics are such neon white papers, you tend to forget the humans behind the information.
I would like to tell you about me. Somehow I know it will make me feel better, even if I would end up losing some of my readers search for a fancy glittery mystery in me. I'm bored of puking up the old news, always trying to hide my true self.
Onto another side of me.
The other half.
The one I want to protect
and dont let out here so much.
My name is really Kristina. I'm not such a mystery, even though I'm not the anonymous person that rush past you on town. I'm not such a uniqueness, even though I understand what it means to feel different. I'm not really a gloomy person. I have never been a goth, a hippie or a wannebe. I have never had a cool or interesting life, in a way that it could make others have wished they were me. I have never had big dreams, or maybe I have...
When I were little I was shy, nervous, moody and optimistic. I liked to play by myself alone as much as I liked to play with a friend. As long as it wasn't too many people, I felt okay. My first friend was a boy that lived across the street. We would play out in our gardens like kids do. I belive I was a normal child.
When I was four I fell and hit my knee after I tried to stand on a round object. It got swollen and red, but from before I had many scars and such from playing, so no one really thought anything about it. My knee would never be same and sooner or later I had the same problem with the other knee. The doctors said it was caused by the growing of the bones, many children get these things they said. I guess people that didn't know me wouldn't notice a change in my behaviour, except for my parents. I would start to become very careful with how I played and I was scared I was going to hurt myself. My parents would often be mad at my brother for being rough with me, they were scared and didn't really understand what I was suffering from. After many visits to the doctors, one of them finally found something. They took a blood test and it showed my body level was over hundred. A normal healthy human will have a body level around twelve or so, while if the same one has a cold and a fever it could rise to thirty or so. Since I had over hundred, It would either mean cancer or some other kind of serious inflammation. The test results gave an impression of blood cancer. It was not. I cant remember how my parents took it, I cant remember how I took it. I had the condition that represtents autoimune systematic connective tissue illnesses, it causes inflammation around here and there in your bones. It's not lethal in itself, but you can die of a long term use of drugs that you would take because of it. A good friend of me, that I meet in hospital have this condition in her inner organs as well and that could of course be quite lethal.
I was visiting the hospital in Oslo a lot and I used to stay there for a week, every third week. We took the train, usually me and my mom, while my dad was at home with my brother. My mom became friends with the cafeteria woman that worked on the station and we used to go in by the kitchen door to sit and wait for the train in the cafe. It had such a grey and dusty atmosphere to it. It was like the time stood still in there, maybe it was because there was never too many people in the cafe. I was allowed to go behind the counter and pick out a comic book magazine my mom would buy to me. I always had my little red hand suitcase with me, because I saw that people usually had suitcases with them on the train. I remember I wondered about what I should put inside my suitcase, it was so small, but it had to include something. It had to, so I could open it on the train and look smart. Usually it would hold a small doll or a stuffed animal. I liked to take the train. I would sit by the window and comment on everything that flew by. I would always eat the same waffles that they sold on the train. I used to draw trains a lot, red trains. When I went to kindergarden, all the children there would draw me a drawing on a round paper and they would put them all together and it would be a long worm, with a head drawing at first. They would send me the worm while I stayed in the hospital. I had the long worm hanging on the wall over my hospital bed, then I took it home with me and had it over my own bed. I like the fact that most of the drawings included a train, they had drew it the way I had taught them how to draw them. Because of traveling so much with the train, I have gotten a special feeling about them. A hate and love relationship to them. They would bring me to a place I hated and they would also take me away from it. It's strange how all the old train stations have the same gloomy feeling to them. I had a strange feeling when they put down the old West Road (Vest Banen) in Oslo. For me it was like a part of my life had changed when I never traveled to it anymore.
I took a lot of medications, generally things that were made against cancer. These kinds of medications were supposed to stop or reduce inflammation. Often they would have their own bad effects in themselfs. I would get a lower immune system, which would mean that I would have to stay away from people that had certain normal child diseases, as I could get a lot worse than what would be usual if I was infected. I never had any of the normal child diseases and growing up I was generally quite healthy apart from my condition. My brother used to be a sickly child compared to me. Apart from all the medications, they did lots of test programs on me. I remember I was around six or maybe seven or so when they placed large needels in my knees and pulled out some kind of liquid. I would lay and watch, but I wouldn't cry, if I were promised to be allowed to go home the next day, I would be happy.
They would put me on a common medication called Cortisone. It had a great affect on me and to be honest I was practically healthy when I stayed on it. All my inflammations went away and I could walk for miles without feeling tired. I couldn't stay on it for very long however. It makes your bone structure smaller, thiner and much more frail and that's not a good thing when you are a child and your bones grow. You also get a very low immune system. It can cause damages to your inner organs and I belive it can generally do all kinds of shit with your body, things I wouldn't even want to know. I wasn't so happy about not taking it anymore, but it was important for my body in the long run I guess. When I was around ten years old I went on one of those cancer medication that they call cell poision. It's supposed to deal with serious inflammations. It makes you puke and feel poisoned. I would have to take it every weekend, as I couldn't go puking at school. I would lay at home feeling sick all weekends for seven years or so, when I took them. I remember I felt a stitch in my chest every time I heard someone express their love for weekends. Later on the doctors have told me that they probably didn't really have much of a good affect on my body. The cell poision can create quite serious damages to the kidneys and liver, so it was a sad thing to hear and I had gone trough such fires to not become too sick from this medication. Along with these there have been too many medications, tests and programs for me to write about here. I went to specialists, herb doctors and everything else. I didn't eat sugar for many years when I were little. Then my parents decided that I should have a break for awhile, from many of the test programs and treatments I went on, so that my life wouldn't just be about pills, white walls and doctors. I would still visit the hospital now and then on a regular basis and take the medications they felt I needed. My parents wanted to have done everything for me and all in all I would have to say that they have been very patient and considerate. I feel now that I'm older that I wouldn't have wanted to exchange them with anything.
I hate hospitals. It's something about the sounds to them. They can be quiet, while at the same time summing monotonic in the long halls. The industrial alike roof lamps would sing it's own small tunes, that only the once that wait and lie still would hear. They can be real noisy with sharp squeaky sounds, similar to the once you can hear in other public places. Sometimes during day it can feel like one big train station, while in the evening it bears the resemblance of the old peoples buildings. I'm always thinking then; -I dont want to die young, but I never want to be that old either. Maybe it's a terrible though; but I'd rather die quick in an accident.
When I was little I didn't have this feeling of a hole in my chest when I were in the hospital. I would cry about it instead. Today I feel on this hole that isn't really there. A feeling that tells me to scream out loud, but then nothing comes out. I'm numb, sweaty and nervous. If there is a god that is meant to judge me, I feel he would wear a white doctors jacket. I feel I have meet him many times and he uses words I dont understand, but I know deep inside my hole there, where the words will bring me. It's not where they will bring me that I fear, it's the feeling of something being ripped away from me. A better future, a happyness beyond the hole.
I've never really liked school, so I wasn't very unhappy about being away from it a lot because of hospital visits. I had special lessons outside of the class on a regular basis, because of my absence. Mostly I had a lot of mathematics in these hours outside the class. I hated mathematics with a passion. Later on I did a test that was going to show what I had been missing in school. It showed that I actually was on my level in most of the school subjects. Apart from mathematic. It showed I had gotten fobic tendencies about the maths. Because of my great absence in school and my bad mathematic level, I could get an exemption in math when I studied. Of course I get a lot of other great benefits when it comes to studies and such. Benefits that healthy people wouldn't get.
I actually nearly didn't attend Junior High at all. I was very ill at that time and I practically couldn't walk. I didn't feel I had anything in common with healthy people at my own age. I felt both younger and older than them. They talked about simple things I couldn't relate too. I wanted to talk about the same things, feel that I belonged to that type of people. I didn't want to be excluded, but when there were so many things I felt they wouldn't understand, I didn't feel there would be a point in trying. I thought it was better for me to stay at home and leave the school people to their carefree every day life. At that time all I ever wanted was to be normal, healthy and carefree. I was very sad about the obvious fact that I was never going to be anything else but me. I didn't think about that carefree people could have problems too. The first year in high school had to be specially adjusted so it would fit in with my long times at the hospital. For four years I didn't walk at all. I did train a lot though, very hard training so my muscles wouldn't fade away. Then I spent a whole year in hospital. They did some serious and very painful operations in my hips and knees. Then it was hard training again. A doctor would tell me at one point after the operations, -that I would never walk again. I thought it was a difficult thing to hear, because I had been and was still working so hard on it. I trained from morning until evening, I were the only one that lay in the youth section in the hospital all trough the summer. Patients came and left and came again. I was there. That I wasn't going to walk again was a big disappointment, I had forgot what it was like.
I did walk again. The same doctor that told me that I would never walk again, said it was miracle and how strange is that for a doctor to say. I thought it was stupid, I had trained and trained like a sports moron, felt the pain, the scars, the blood, the tears and the sweat and all he could say was that it were a miracle?! but I dont really want to talk about doctors now. I was so happy about the walking. Sometimes I would walk so much that I wouldn't be able to walk the next day. I like the muscle pain you get from training or walking very far. I like it probably more than most. I know I like it more than my parents understand, because they have often wanted me to relax more and not ask too much of myself. I realise now later on, that I will never be able to walk as much as healthy people do. I have gotten a problem with my ankles and I cant walk very far before they feel nasty. Of course I could operate them, but the ankle operations are not so great. If I would operate my ankles it would mean that they would ruin the movement I have in them. I would probably be able to take longer walks and such, but to me it seems nasty to not be able to move your anle up and down. I dont know if I will do the operation later on, maybe I will, maybe I wont. Sooner or later I probably will do it.
They say it's strange that a person can go around with a body level over hundred and feel okay. It causes a lot of strain to the body when you have such a high body level for a long time. I never really felt sick, as I can imagine a person with cancer could feel. The statistics from the blood tests would speak it's dark message. As much as they tried to lower my body level with their fancy magic pills, it stayed around hundred. It never changed. When I were little I cared very little of the numbers they got out of the blood, it didn't mean anything interesting to me. My parents were the once that were concerned and hoped for a luck like ill bingo players would sweat themselfs trough the silent moments before the number pulling. I possessed the most fatal effects to destroy the naive hope and luck an honestly good person could have. Yet my parents belived in me always. Wouldn't it be great if this kind of belief would exist in politicians and these suit and tie men that run things? Wouldn't the world be better? wouldn't you want this kind of love? the naivety of parents, it's the greatest thing I've ever owned.
I went off of most of the serious medications when I became a teenager. I didn't want it anymore, they gave me such trouble and I guess I wanted to rebel because of the bad times with the nasty drugs. When I was around fifteen, in one of my usual visits to the hospital, my parents finally got some good numbers. My body level had dropped. It was around forty. Not normal, but it was an extreme change and improvement for me. I didn't feel different however. It's something else with a healthy person that gets a high body level all of a sudden and a person that have lived with an extremely high level half of it's life. You dont notice anything and of course that could be a very scary part of it. I've never really managed to feel happy or sad about the test results in themselfs, it kind of brushes off of me. I never really belived in the numbers, sometimes I feel I dont even want to know. I like to just know how I feel, in myself. I dont like bingo playing either, I'm not optimistic person that way and I usually think that there must be a happiness outside of this.
So, on the 22 of October I went to the hospital again. A usual basic visit, to take some x-rays and talk to a doctor about operations and such. As you may have read here before, I have managed to quit all of my medications and that's basically a fantastic thing for me. It is, because I have always been on something since I was four years old. It's good for my body in general to not have to deal with all those drugs. Anyway, I felt sad this day, in a way I have never felt. The doctor were so insensitive. He didn't say anything posetive. See I have a problem with my elbow. He didn't think the operations would do me any good, pretty much none of them. I have such frail bone structure, so he thought they would ruin the bone in my elbow if they would operate it. If that happened it could mean that I wouldn't be able to use my arm at all, maybe I wouldn't be able to write. He also thought the other elbow would become a problem eventually, generally because they have been inside it before and put something in there. These things wont last forever. It wasn't much posetive information. These things make me nervous and maybe it isn't so strange that I have a high blood pressure. Now I am going to think about what I want to do. I guess I will risk the complications with the arm and do the operation. I will have to do it sooner or later anyway.
When we went home by car that day, I felt things looked quite dark for me, in many ways I still feel they do. I worry a lot about the future. Even if I'm not dying, it's a quite difficult thing to be a human. I feel so. I thought in the car then that maybe it would have been better to let my future go. If I ever had a dream, it is to not feel so lonely and too have something I really care about. I dont think I have achieved anything I really thought I should in life. I feel I'm a bad unhealthy person, because I'm often quite envious, I crave things I can never have. I dont want to be me, I dont think anyone should be me. Yet I dont want anyone to feel sorry for me.
As I sat there in the car and thought about the future, imagined how it would be without me. I've always used to think that my family would be much better then. I feel that I'm always a burden to the once I care about and I hate it so much. When I almost died of pneumonia once (because of complications under an operation), I felt that I was someone important, to the once I feel I'm a burden to. So I wanted to change my view of things, I wanted to do good things for myself and in that way change my sadness. It was such a bad weather on tuesday when I came from the hospital, snow and rain had been pouring down and made the roads slick. My parents talked nervously about the dangerous roads. Then as I sat there and thought that it maybe would have been better if I died on the road, we were suddenly hit by a big lorry and our car were just inches from being crushed to pieces. It was strange to feel that I wasn't scared about it then, what had just happened didn't move me. I thought then that I didn't want to have this diary anymore. It has meant so much for me to write in this. It have been so giving. I dont have so many things in my life that I care about. I have my family, a few friends and this diary. It's good. I want to try to continue here, but I wanted to write a much more personal entry for once. To make you all see the real me behind this.
I'm sensetive and I do have dreams, it's just that I feel that they are so frail. If I hide them and hide myself, then no one can take them away from me.
Old Comments:
These comments are taken from the site, where I used to keep my journal, before I moved it here.
You can add replies to the entry, or the comments below.
From Geezo: I am in awe, Kristina. For your courage and strength, you have my undying respect. Anything I say will probably seem too weak, but I wanted to tell you how much I appreciate this glimpse into who you are and what you've experienced. I don't want to sound like I'm feeling sorry for you....but my heart does go out to you. You are an amazing person, and a true warrior. I hope you never give up the fight. This world could use a lot more Kristina "Ravenheart"s. Take care. --Geezo
From Kristina: Ah, thank you for your nice words Geezo. You are just great and it's very special to feel the support!
From kris: I just stumbled on your diary and I really like it. It sounds as though you have been through a lot in the course of your life so far. I admire your courage and the way you think positively. You've got guts, girl. I am dying to read more, so I've added you to my favorites, if you don't mind.
From Kristina: Hello Kris! It's sure nice with a few good words sometimes, thanks for adding me to your favorites, take care!
From Gard: My own commute to the hospital seems like nothing. I mean, I go there every month and such, but my condition isn't nearly as serious as yours. Yet, I can still relate to the comments you don't want to hear from others, because I hear them myself. It's like it is so much harder on everybody else. It's not that I enjoy going back and forth to the hospital, and I can get really bored very fast. But that's just the situation, and life is not about the situation, or about the things that happen to us, but it is about how we handle it. And when push comes to shove, we all seem to handle these things very nicely. But until we are in the situation, it is so easy to say "Oh my, I couild never handle that." It's not that I want others to experience the same things us "hospital commuters" have to go through. It's just that it is so much nicer to hear "so what are you going to do next?" than "I'm so sorry." Each fork in the road is just a fork in the road. There is no right choice, and there is no wrong choice. And no matter where you find yourself at, you are always far ahead of where you were at birth. Because then, you had nothing. So... Raven... what are you going to do next? :)
From Kristina: Thanks for the words Gard, I dont really know where I will be going or doing, but I will be doing and going somewhere. What I do know is; it's nice to hear about other peoples experiences, it makes you feel less alone with your problem, if you know what I mean.