But I decided that this is important, cause this is how it was for me, for kids like me and in a lot of countries this still happens.
I hope you can read it and get the sentence of it. Never let kids be abused. Never let kids be abandoned. Never give kids inside scares. They stay there forever. Even if you learn to live with them. They are there. They say hallo from time to time, and usually when you dont want them to show up.
The Infection Clinic
The feeling of not being able to breathe yourself
It is so heavy, so incredibly heavy to breathe. Feels like someone sucks out all the air. I gasp desperately, feel like a fish on land.
My chest hurts.
It is spinning in my head.
It hurts all over the body.
I close my eyes hard hard and just try to breathe.
Someone is picking me up.
Someone carries my body someone is holding my head and someone is holding hoses that are inset in my body.
They lay me on a stretcher covered in a cracky mattress.
My skin hurts when they grab me.
Something is pulled down over me, something’s is wrapped around me.
I gently open my eyes and see my own pale face.
In a mirror I look at myself and I understand nothing.
I am just so immensely scared and have so much pain in my body.
I am cold and sweating at the same time from the fever and the ravages of the polio virus in my body.
My head aches, it explodes, it screams in my head
Someone starts to touch my head, moves my hair, attaches strange little plates.
I see in the mirror how my head is increasingly filled with these strange little white round things. From each plate goes a cord. I cannot see where; I can only hear mumbling and machines crackling.
It will be dark and quiet. Fortunately, I fall into a deep sleep.
The fever in my body takes over and I get to hide in the gentle realm of sleep.
They have measured and measured and concluded that I also got meningitis.
When I wake up again, I am so thirsty. Trying to move to grab a glass of water.
The total panic quickly occurs, I cannot lift my arms, I cannot lift my legs.
I cannot do anything.
I hear a weird sound.
A puffing and snorting sound. Its tacitly.
It smells strange of rubber and metal.
I look up at myself in the mirror and what I see I do not recognize.
It is a little little person. |
A frightened little person with very empty eyes.
Eyes that see but don’t see.
I hear the door to my room opens, I hear steps of clogs approaching.
A face pops up over me and it is a woman with a white cap in sharp folds on her head. Hair curls protrudes below the edge of the cap, straight, in the same direction
Her nose is sharp, her mouth narrow and her eyes icy blue.
I hear her talking, but I do not understand what she’s saying.
I hear words like an iron lung, cannot breathe on my own, you cannot walk, your polio does this.
I hear the words over and over again, but I don’t understand them.
Where are Mom and Dad?
The face disappears. It gets quiet when the clapping disappears. The only thing that is heard is the snorting of the iron lung and I now feel that there is regular pressure over my chest.
I fall asleep by the sound and the fever’s grip on me.
Someone is coming in, someone is doing something to me.
Someone is leaving.
Someone’s coming in.
Someone is doing something with me.
Someone is leaving.
I do not remember any names, but I remember the total vulnerability and feeling of being all alone.
Completely abandoned.
Why was I left alone?
I am in my iron lung. Trapped!
The hatches on the side open.
The white demons lift me up.
- Let go, I want to go by myself.
No one can hear me. My voice speaks only in my head.
The demons come into my room, they touch me.
– Please, it screams inside me, do not touch me, it hurts so much. Do not turn me around. Do not wash me. Do not scratch at my skin with a knife. Do not put sheets on my arms. I cannot get the words out.
But I can’t get away from them. One of them tells me I must be quiet and kind. I cannot see her face. All I see is her icy blue eyes. Her hair is tucked into a strange white ostrich. The mouth and nose are covered with a white paper and her body is covered in a large white apron. Around her lies a scent of ether.
I must be kind, I must behave, words that spinns around in my head.
They are talking to a man I cannot see. I can only hear his rumbling voice. I hear him give them orders that new samples have to be taken.
No, no, no more, I can’t deal with it!
Once again, I’m being rolled away. Once again, wires are attached to my head. A machine ticks and scrapes by my side, a sound that every minute rises in my head. Am I going crazy? Am I crazy? Is that why God punishes me by removing my arms and legs?
Why doesn’t anyone talk to me?
Why can’t mother and father come in to me?
I can see them outside the room. I can even see them outside my own room. But they never come in to me. Why?
What have I done wrong?
The days flow together. They are there, but they are not. Every day the sun rises. I never see it. Every night the moon shines, I never see it. It is all a haze of pain, longing and anxiety.
The white demons have given me my own room where the walls glow naked white. On one side there is a huge window. Outside I see a small playground. There, children swing, climb and play with each other. When they open my window to ventilate, I can hear their happy laughter. I cannot understand why I can’t be there, why I can’t walk or use my arms.
When mother and father visit, they get to stand in a booth – the hateful booth!
There’s a black bakelite phone. Through it, my mother and father talk to me for a little while every day. It is so strange to hear their otherwise warm voices through a phone handset. The voices get a hard sound, voices that I cannot recognize.
Sometimes I think this is a punishment because I’ve been really stupid. But mother and father would not do this to punish me, would they? I’ve asked them where my sister is? Doesn’t she want to see me? They explain over and over again. She is too young. But she’s my big sister, she can’t be too young, can she?
Sometimes when I look at my mother with the handset in her hand, she looks so sad. Her smile is not like before. Her eyes often fills with tears. She looks tired. My father’s gray, my beautiful dad seems very old. Are they sick, too?
Do the demons hurt them, too?
Some days I just don’t want to talk to them. I don’t care about them. They don’t seem to care about me so I’ll turn my head away from them.
But the demons always come in and bark at me, telling me I’m a stupid girl, disobedient, mean. A girl that hurts her parents feelings terribly. But I just want them to get me out of here!
Eventually everything becomes one big emptiness.
I become like my body, motionless, bland, a empty shell that should contain a child’s great curiosity.
Its bubbling laughter, the tickling of play in the stomach, thoughts and fantasies, security and joy.
But I am nothing.
I have been sucked into a no man’s land.
What in the end managed to crack the compact shell I had around me, I don’t know.
The sounds, the colors the impressions slowly began to attract my attention.
Maybe it was when the fever started to give way. Maybe it was when the unbearable pain began to subside. Or was it the child’s will to survive that made me start to see my surroundings?
I learned to interpret the sounds that snuck into me from the hallway. Not all sounds gave horrors. The night sister’s stealthy, soft footsteps make my stomach tickle. She is so nice. When she comes to me, I get the hotly anticipated hug and caress from a smooth hand over my cheek. She always speaks with a soft, soothing voice and she hums almost like mother as she gently beds about me. She became my safety.
Hard wooden clogs gave me panic, anxiety and a feeling of wanting to escape. This inhospitable sound came either from the physiotherapist, who every day came to stretch and massage my arms and legs. Her not careful hands made the pain even worse. A lot of times she got mad at me. I was considered a disobedient and troublesome girl.
But it just hurt!
One day I had had enough. How I succeeded is a mystery. She was probably in a good position for my teeth to get a real grip on her bare arm. I bit and did not let go. I had done that earlier in my mind, so why not again?
All anxiety, all fear, all worry, and loss sat in this bite.
I screamed.
She yelled.
Everything turned into chaos.
The physiotherapist never came back to me and I was punished with that mother and father not allowed to visit. I heard Mother praying and praying in the hallway, but nothing helped. At the hospital, it was the doctors and staff who decided.
The sentence lasted for two weeks.
I was eventually no more contagious.
When my lungs become strong enough I got out of the iron lung and met my mother and father in my room. The feeling when they first came in to me can hardly be described. It was a great bliss for all three of us.
Yet I carried in my heart a great anger.
There were other moments of joy as well. Like that morning when it itched on my nose. To my great surprise and happiness, I felt my left arm lifted a bit from the heat of the duvet. It was so little, but for me so huge. It bubbled in the stomach of happiness. My mother and father, who were with me, wept of joy. Within me grew a will to fight and a stubbornness that has helped me many times later in life
Train, fight, bite your teeth together, don’t show your feelings, be good! Those words filled my entire existence.
Be strong, be strong, be strong, don’t fail, don’t show emotions, be strong, be strong.
There was no room for play. Never was anyone on hand who gave the child in me permission to develop the play and joy that should have been there. I became a little girl with an old soul that in her loneliness escaped in the world of dreams.
The struggle with my limbs finally paid off. The day I managed to lift my arm right up to my nose, I laughed for the first time since I got sick.
The arms that had previously lain like emaciated worms on the warm surface of the blanket regained some of their strength. I could sit up and see my room from a different perspective. The more strength increased, the more the spirit of adventure grew. One day I lifted my lean, lame legs over the grate of the bed. With a firm grip, I somehow managed to get the rest of the body over the grate.
I hung freely, let go and fell. Like an intense, warm flame, the pain shot up. I bit my teeth together and, on my elbows,, I somehow got up to the door. Looked out carefully and with big, amazed eyes a whole new world opens. I hauled out into the hallway with my legs trailing like heavy, long spaghetti after me.
There smelled clean – maybe a little summer, maybe some buns. It tickled the whole body with excitement, but at the same time the fear lay on hold.
What would happen if the white demons spotted me? I’m sure I’d be punished, but I didn’t care.
A little bit at a time, I conquered the corridor. It’s strange sounds got its explanations. Along the corridor there were a lot of doors that led to rooms the same as my own. When these stood open I saw children, small bodies with damaged arms and legs. In some halls lay several children, they laughed and played together.
Why couldn’t I be with them?
What evil thing have I done, to be punished like this?
I now tried to be so kind, so kind.
I did everything to make sure no one would have any reason to get mad at me. I didn’t cry when they took blood samples. I didn’t scream when they were massaging and stretching my legs. I did everything I could to be one of the other kids.
That day came!
“It’s just for you to do as we say. As a reward, you will move to a dormitory with other children. But do not do anything stupid. Then you have to live alone again “. It was the doctor who gave me these exhortations. I did not answer him, just smiled and nodded.
What a joy to finally live with others. Being moved to a room at the ward with several children gave a context I had so long lacked. My soul, my will, everything within me began to awaken more and more.
We were all aware that we were not like other children. We learned that quickly, especially when families come for visits. Other kids walked, ran, stood on one leg, did all that stuff that we could not.
We all experienced the loss of our homes. We longed for our families. Our withered arms and legs were a sadness we all carried. Sure, we were playing, but not like others. Our games had to take place in the beds that were our worlds. When the legs don’t work, the imagination becomes part of reality. In that reality, there was no polio.
I forgot the threats to be returned to solitary confinement in my own room. I soon became a specialist in getting out of bed with the help of my arms. Getting around in a restricted area caused a feeling of butterflies in my stomach. Advanced one piece at a time and sought shelter under the tables that stood together with the visitors’ armchairs. Underneath, I could lay without being seen. I watched fast feet’s in wooden shoes feet run by. I heard the harsh of starched uniforms swooping back and forth. But among all the sounds there was one that I could not place. A hissing, puffing sound. A sound that was familiar but yet unfamiliar. Where did it come from?
I listened, searched, and finally realized that it had to come from the room at the far end of the corridor.
One day I managed to get there.
There was a huge gray and yellow machine in there. It gave off a rhythmically squeaky sound. A variety of hoses and cords were connected to large tubes at its sides.
What kind of monster was this? My whole body screamed no, there was the recognition but now from the outside.
I was afraid, but the curiosity was so great that it took over.
I slowly got towards it.
I got under it and lying perfectly still. Looked right up at its huge belly. The monster was waisted and puffed rhythmically.
Oh, no! The white evil demons have found me. I stiffened up. If I do not breathe, they might think they saw wrong. I am not here!
- Little princess, come closer. I’m just a kid like you, but older, of course. But you have to come up a little bit more to see me. I cannot get down to you.
Slowly I became aware that this thin, gentle voice belonged to a boy.
- Come on, I want to see you all of you.
Gently, I moved a little bit. Fear slowly began to release its crippling grip.
A mirror and in it a thin face. A face so thin that it seemed translucent. A boy’s eyes looked right into mine. Large, light blue eyes framed by a blond hair and with a mouth colored by cherries that smiled. A smile so warm that it felt like all the rays of the sun hit me.
- Hey, little one, who are you?
- Gilli, I answered with a weak voice.
- I am Dan.
- Did the machine monster eat you?
Dan’s laughter sounded like silver bells through the room. - No, no, the machine’s not a monster. I must lay here, you see, because the machine helps me breathe. This is called an iron lung and if I weren’t in it, I wouldn’t be alive now.
In that moment the feeling ran into my body, the feeling that I had been there, I had been in a similar monster.
- Why
- – I don’t know why. I have polio like you, but I got sick even in my lungs. Sicker lungs than you got. That’s why I have to stay here.
- Always?
– I don’t know little girl. But I hope not. By the way, have you slipped out of your room?
– Yes, but don’t tell the demons, or I’ll have to move back to my own room again.
- Don’t worry, it’ll be our secret. But then you must promise to visit me again.
I did not understand why he had to always lay like that, but when he explained that nothing in his body worked, I began to sense that the machine was the only thing keeping him alive. I had forgotten that it was one of those machines that helped me in the beginning when the polio had a grip my lungs too.
I was always scared when I was going to Dan.
What if they caught me? Then it would all end.
I didn’t want that to happen.
I was his princess, he said, and he was my everything.
We made our own fairy tales. No one would ever hear them because they were our escape, our play and joy.
At regular intervals, the nurses came in to him. Then I had to lay completely silent under the machine’s stomach, terrified of sneezing or coughing. The slightest noise could break our friendship.
Dan made me feel important and loved. His way of saying how cute I was with my long, blonde hair gave a warmth. My hair that I was so proud of and needed so much. I used it as comfort. Dan gave me everything I could not get from my mother and father.
I’d been under the machine for a long time talking to Dan through his mirror.
On this day, I had for the first time had to try the hospital swimming pool.
It made me extra tired. Dan told a story and all the time the rhythmically sound from the iron lung was heard in the background. I fell asleep.
Something happened to Dan!
I was awakened by a loudly hard signal. Looked up at the mirror and saw his face distorted and gray. I screamed right out. Shouted out his name but got no answer. I heard shoes coming running.
I screamed and screamed.
All I saw were skirt edges and white clogs. Through the mirror I could see how they tore open the hatches on the side of Dan’s iron lung. Someone had a big syringe in her hand and at that moment then I felt a tight grip on my feet. Saw an angry face. Felt the demon shake me. She barked at me with icy voice.
- Now look what you have done!
I was sent to someone else who, with a firm grip, carried me away. Threw me into my bed and pulled up the grate. I did not understand what had happened.
What did they do to my Dan?
Tears flowed. They never seemed to end.
My arms were sore after the nurse’s grip. She has told me I have messed up.
What have I done?
I wanted to see Dan.
I wanted to see how he was doing.
I wanted to make sure everything was okay.
Stubbornly, I tried to shake down the grate, tore and pulled. But nothing happened. I turned it on for all that I could. Then someone grabbed me. A hard palm hit the cheek. It hurt and burned like fire.
She screamed
– That’s enough! Not another word from you.
The fear and panic was so great that I could feel it in my stomach. Could no longer hold back. Vomited. Collapsed like a rag doll.
I returned to my old way of shutting down the outside world. Into the land of imagination and sleep. Didn’t want to see, didn’t want to hear, didn’t want to exist.
Woke up to a hand gently caressing my cheek. It was dark in the room. All that was heard were small snoring and snuff from the other children. Slowly I realized that it was night and that the hand belonged to the kind night sister.
She held her finger in front of her own mouth to tell me that now I have to be very quiet.
Gently she carried me out of bed and into the hallway.
Dan I said with a voice that was filled with question marks.
– Sch, not so loud. He is fine. He is asleep now, but we can walk to his room so you can see for yourself.
She walked away with me in her arms. In her arms I felt happy, safe and well-liked there, I could have stayed for all eternity, curled up, small, listening to the beats of her heart.
We came to Dan’s room and there he was. Quiet, snoring, pale but alive.
What’s going to happen now?
Would I never see Dan again?
Would they isolate me again?
In the morning I did not dare to look out when I heard the door to our room open.
I was barely breathing. I hope they don’t see me.
Someone put a washbasin on my table with a hard knock but did not talk to me.
The other children were helped to the washroom. But I had to sit in bed and blaze like a little baby.
In the hallway, the breakfast cart was heard. On my table was a plate of porridge and a sandwich.
– I don’t like porridge.
– You eat what’s served.
They knew so well that porridge made me sick, yet that’s all I got.
I did not eat the porridge, just took my sandwich.
But the pieces of sandwich grew in my mouth and mixed with the salty taste of my tears.
Oh, so I longed for Dan!
När det var dags för läkaren att besöka avdelningen med systrar i släp, hans kappa fladdrade som vingarna på en fladdermus. De pratade om mig. En otäck känsla av att inte vara där.
He turned to me, grasped my long braid and said.
– This one can’t be easy to keep track of. We have to do something about it.
Then they all disappeared as fast as they got here. Strange, no one said a word about what happened yesterday. What did he mean by something to be done about my braid?
Then she came.
The sister I hated the most. She was big and rough.
– Now, little friend, she said with a voice filled with icicles. Now we’re going to fix you up so we don’t have any trouble, and the doctor will be happy. You heard what he said, didn’t you?
-What do you mean?
Fear made my voice tremble like aspen leaves. She did not answer, just looked at me with cold eyes. I shrunked. Something was gleaming in her hand.
– What have you got there? I whispered.
No answer.
Just her evil eyes staring at me while her mouth was pulled up in a strange smile. She reached out her hand, and in it there was a scissor. Now I understood. Hair. Mother’s pride, my comfort. My long light, curly hair that was so nice to wrap my fingers in. My hair tickled my back, which gave shivers all the way down my toes when it hung wet. My hair that mother loved to brush with long, sweeping hold to the glow of gold. My hair she braided into a shiny braid and decorated with hair bands in all the colors of the rainbow. –
No, you cannot! Mom gets really mad! Daddy’s going to hit you, watch out he is really strong!
I grabbed the blanket.
Tried to hide under it, but her hands took a firm hold of me. She threw away the blanket and lifted me out of bed. Another demon was there too. I was put in the other’s lap. She held me hard between her thighs. With my legs and arms locked, I didn’t have a chance to get away. All I could do now was to throw my head as much as possible so that they couldn’t get hold of my braid. A fight I was doomed to lose beforehand. Hands took a firm grip on my head. It hurt my ears. It pulled on my scalp.
– I’ll never get out of bed again, please I’ll always eat porridge.
She got my braid. I saw the scissors gleaming in the corner of my eye.
– Please stop, I whispered.
Everything stood still.
In her hand dangled a thick, shiny hair braid.
The demon would have mutilated me.
– That wasn’t so bad, was it?
The grip on me let go. She put me in bed and the grille was pulled up in the highest position.
My hands gently came to my head. There was nothing.
I just sat right up and stared into an empty wall. As empty as my soul. Inside, a hatred, a sadness black as coal, a despair that strangled the air was awakened.
I tried to breathe.
Grief grew with every minute that passed. It made the heart beat quickly, causing blood to flow in the veins as fast as the river does when winter releases its grip.
Visiting hours were approaching. I longed so amazingly, I thought my heart would burst.
I heard mother and father. Their voices were loud, vibrating with anger. Was it me they were mad at?
I heard some words. Small fragments of their conversation penetrated to me, but I could not get any idea of what it was about. I curled up, hid under the blanket. Felt mother’s scent tickle my nose. Her arms that lifted me. Her soft hand that slowly caressed my bare neck. On her cheeks, tears that mingled with my own fell.
– Honey, what have they done to you? Father’s talking to the doctor. I’m never going to let anything happen to you again.
Please take me home!
– But Gilli, we cannot. What if we brought you home and your arms stopped working again? Here you can get help, so you might be able to walk again.
-I hate my legs. I hate everybody!
– Sch, let us try to forget about this. Bite your teeth hard together and be a good girl now. You’re going to see that your hair is growing back soon. Sweetheart, you should have asked permission to be inside that boy’ s house.
Be strong, be strong, be strong, do not fail, don’t show emotions, be strong, be strong.
Father explained repeatedly how important it was not to do something without first asking permission. But I knew that even if I asked, they would say no just to be mean.
While mother and father were still there, one of the good sisters came in with us.
– Tomorrow you’re going to see Dan.
I howled right out with joy. I laughed so I cried. My mother and father hugged me hard, hard. Even my mother cried, but now there were tears of happiness.
– How come, father asked.
Dan has begged. He has refused to eat unless his little princess is allowed to come in to him. So we thought it was just as well.
– You see now, baby, it’s going to be okay. Now you’re going to be with your Dan, father.
– Yes, but my hair, now I’m not a pretty little princess anymore.
Mother laughed easily.
– You’ll always be a princess, both for us and for Dan.
Never has the breakfast gone down so fast in the stomach when the morning finally came. Threw me down on the floor and quickly hurled into the hallway.
At the door, I was finally able to shout. Dan!
I did not have to whisper.
I quickly placed under the stomach of the machine and there was now a blanket and a pillow, a small paradise.
– hey princess, nice to get something soft to lie on, right?
– How did you do it?
– I guess I just know how to do things. But honey, they have hurt you. I heard your screams all the way here yesterday. That’s when they cut your hair, isn’t it?
I could only nod to the answer.
– But you’re just as pretty and hair grows back.
Every day when it was visiting time, mother and father first went into Dan’s room and for the most part they found me there. It was so wonderful that they cared as much about him as they cared about me. When they were with us, I had to sit on someone’s lap and then I could pat Dan’s cheek. The first time, we both cried. Maybe we would both have longed for it.
Sometimes I saw my mother looking at Dan with a look full of sadness. I could not understand why she was so sad. Was it because he lived in a machine? Yes, maybe, but he was happy anyway. Or was it something else, something I was too small to understand?
Dan and I built our own fairytale world. A world where no one else could reach. Filled with heat and light. Dangers could fool, but we always overcame them.
– No, that’s enough for tonight. It’s bedtime for all the kids. The nurse’s voice broke our story at the very most exciting time.
– Night night Dan, I’ll see you tomorrow.
– Sleep well princess, dream sweet.
My first thought of the morning went to Dan and to our history we would continue with.
Now they are going to have to hurry up here with my breakfast.
Finally!
As usual, it went down as fast as I could to his
Quickly in, pulled and tore into the blanket and pillow to arrange it comfortably.
-Dan, Dan, hello, sleepy, I shouted.
No answer!
It slowly crept in a feeling that something was different.
It was so strangely quiet.
But help there was no hissing, puffing rhythmic sound from the machine.
Is it broken?
Oh, no, it cannot break. It’s breathing for Dan.
In the stomach grew the strange feeling of worry, something was wrong.
-Dan, Dan answer me!
My voice cut like knives through the air. Looked up at the mirror, but there was nothing. Dance beautiful, pale face with the warm blue eyes and charming smile was not there. All I saw was his pillow with a pit in where his head was supposed to be. Now I saw that the machine was open on the side.
It cannot be!
The hatch must be closed, otherwise the machine will not push his lungs upside down. I called for help but wasn’t aware that I’d already been screaming for quite a while.
A hard clog came a long way closer. Someone threw themselves down on the floor and crawled towards me.
– Who took Dan? I screamed right out.
-Where is he? Bring me my Dan! Who took Dan?
She hold me hard against her breast.
-Where’s Dan? I want to go to him!
– Let’s calm down, don’t worry, she said while she was carrying me out of the room.
-Where’s Dan?
– little friend, listen carefully. Dan died this morning. His body could not take it anymore.
-Dan can’t be dead. We are going to keep up our story. Where is he? Stop lying!
I knew so well what death was. Many children had died of polio, some in the same room I slept in. Death was part of reality. When you died, you did not exist anymore. Mother had said that then you went up to heaven and there you lived another life for all eternity. You never came back to Earth. To me, heaven felt like a terrible, dark, evil place. It took everyone away from me.
They talked and talked to me, but I could not accept that Dan was dead. Nothing could make me understand that I was alone again. Our fairy tales had come to an end.
I did not want to realize that my safety, my best friend, would never look at me again through the mirror. That I would never hear his sounding laughter again. I did not want to believe that his deep blue, glittering eyes, would never see into mine again.
I couldn’t believe I’d never caress his thin, pale cheek again.
Inside me, a scream rose.
A feeling that the heart was bursting.
I screamed right out, but that was the last thing that came out of me in a very long time.
I fell silent.
Closed me completely from the outside world. No longer wanted to be there. What meant most of all to me had now been removed. The feeling of loneliness was so total that I defended myself by turning my whole life off.