ThePruneBellyGirl

A postcard arrives for the girl at Children's ward IV at Karolinska Hospital in Stockholm. April 28, 1968 is cancelled on the stamp with the old king. The postage is 45 öre. There is a cartoon dog on the postcard. And a small cat that is hissing at the big dog to defend its prey, a bone on a plate, towards the dog, that has plastic balls for eyes that the black pupils can roll around in. But cats don't usually eat dog bones.   Hi Mariana! Here you get a little doggie for your name day. If you squeeze his stomach you will hear what he does. Grandma and Grandpa have been here to visit us. We hope you can come home to us soon. Ask the doctor if you aren't well soon. Bye bye! Greetings from Mom and Dad. The girl presses the card. Which beeps. Maybe it means "Happy name day!" in postcard doggie language.   #ThePruneBellyGirl #PruneBelly #PruneBellySyndrome #rare diseases #survivor #childhood #han...

Another mother has gone home from Karolinska Hospital and has left her daughter, her name is Anneli, with a bag of candy as consolation. The “Non-Stop” candy, the candy coated chocolate lenses, are beautifully colorful. Yellow, red, green, brown, black, orange. The girl steals the bag of candy from Anneli. The girl usually never gets candy. And the girl is only two years old, so she doesn't even eat Anneli's Non-Stops. She just plays with them and crushes them. Non-Stop. Anneli screams and cries. Over the loss. And the girl's mother promises herself to never ever leave her own daughter with a bag of candy as consolation.   At Karolinska Hospital 1968 #ThePruneBellyGirl #PruneBelly #PruneBellySyndrome #rare diseases #survivor #childhood #handicap #autobiography #disability #childrenshospital #karolinska #separations   These poems are originally written in Swedish and translated by myself. So if the translation sounds ...

The girl is to be left in the hospital with nurses and doctors. She clings to her mother and her father and cries. The girl is to be allowed to go home to her mother and her father. She clings to her nurse and cries. Always these separations.   The Prune Belly Girl and nurse Eva at Karolinska Hospital  #ThePruneBellyGirl #PruneBelly #PruneBellySyndrome #rare diseases #survivor #childhood #handicap #autobiography #disability #childrenshospital #separations  These poems are originally written in Swedish and translated by myself. So if the translation sounds weird - please just laugh, or cry, or just shake your head and move on to the next poem, hoping for a better translation there... Thank you for your patience, and for following my story! By the way - my lyrics sometimes sounds weird in Swedish too...  

The mother writes a letter to the father: Stockholm October 21, 1968 Hi! I have to write you a few lines. When we call, it's always so urgent. A s you can imagine it's terrible to be here, I sometimes wish I was at home, but Mariana is so happy when I come down to her, that there are no limits to it. She kisses and hugs me and is so cute. It's just a shame that she has to suffer so much. I think she will take quite a lot of damage this time. And now she's so big that she remembers more. /.../ It's so sad for her, you can't believe it, she has such pain and they don't get any painkillers when they're so small." The girl gets no painkillers. Not for any kind of pain.   The maternity flat and children's ward are marked on the postcard   #ThePruneBellyGirl #PruneBelly #PruneBellySyndrome #rare diseases #survivor #childhood #handicap #autobiography #disability #childrenshospital #karolinska  These poems are originally written in Swed...

The doctors' round comes sweeping into the girl's room at Karolinska Hospital At the head, the chief physician and docent N.O. Ericson, accompanied by a whole bunch of medical candidates and nurses who listen attentionally as the chief physician explains that here we have Mariana, and when she stands she looks like a pregnant woman, and when she lies down she looks like a sunked sofa. The candidates laugh.  The associate professor looks pleased.   The mother goes up to the maternity flat and cries.    #ThePruneBellyGirl #PruneBelly #PruneBellySyndrome #rare diseases #survivor #childhood #handicap #autobiography #disability #childrenshospital #karolinska  These poems are originally written in Swedish and translated by myself. So if the translation sounds weird - please just laugh, or cry, or just shake your head and move on to the next poem, hoping for a better translation there... Thank you for your patience, and ...

At Karolinska Hospital they are testing something new on the girl with the prune belly to get the lazy bladder working. Well, that's what they say. Even though laziness requires an expression of will and that the bladder muscles are controlled by the central nervous system and are controlled automatically without will, without a choice to be just lazy.    The "lazy" bladder must be trained on the potty too... Injections with Carbacholin, are supposed to make the lazy bladder contract. They contract the whole girl. She gets flaming red and sweaty and it hurts, and the girl cries and the mother; who is visiting at that moment, these very weeks when the experiments are taking place; can do nothing but watch and try to comfort the girl while she cries and is in pain. And perhaps the girl, the two-year-old girl, wonders why the mother doesn't intervene, why the mother doesn't stop, doesn't stop ...

The girl has turned one year. Diary at the Children's Clinic 20 July 1966. Dr. Gothefors writes: "Transferred today to Children's ward IV as requested. Is completely unaffected and the ward's little ray of sunshine." A few days later, 25 July 1966, Dr. Höyeraal writes: "Since she came over here she has been the ward's little ray of sunshine here too." 8 August, 1966 "Sweet and pleasant girl, interested in her surroundings, screams loudly as soon as you leave her. Sociable, needs company."   #ThePruneBellyGirl #PruneBelly #PruneBellySyndrome #rare diseases #survivor #childhood #handicap #autobiography #disability #childrenshospital These poems are originally written in Swedish and translated by myself. So if the translation sounds weird - please just laugh, or cry, or just shake your head and move on to the next poem, hoping for a better translation there... Thank you for your patience, and for followi...

The girl looks sunburned. As if she was outdoor in the fresh air in the sun a lot. Instead of being inside a room in a hospital all the time. So the healthy complexion is just deceiving. But it's not strange at all that she looks so fresh and sunburnt. Since the girl has such diarrhea, she drinks lots of carrot juice.   Not carrot juice, but carrot puree!   #ThePruneBellyGirl #PruneBelly #PruneBellySyndrome #rare diseases #survivor #childhood #handicap #autobiography #disability #childrenshospital These poems are originally written in Swedish and translated by myself. So if the translation sounds weird - please just laugh, or cry, or just shake your head and move on to the next poem, hoping for a better translation there... Thank you for your patience, and for following my story! By the way - my lyrics sometimes sounds weird in Swedish too...  

The girl eats yogurt. For breakfast. For lunch. For supper. When the nurse asks what the girl wants for a snack, the answer is always: - Yogurt! Maybe the girl gets an overdose of yogurt. Because at some point during her adolescence, the girl stops eating yogurt. Nowadays, she can't even stand the smell of yogurt. The smell of yogurt makes her want to vomit. Maybe the yogurt is a physical memory the body's memory, of her time in the hospital. The nose remembers what the memory doesn't remember.   Not yogurt this time, but milk.    #ThePruneBellyGirl #PruneBelly #PruneBellySyndrome #rare diseases #survivor #childhood #handicap #autobiography #disability #childrenshospital These poems are originally written in Swedish and translated by myself. So if the translation sounds weird - please just laugh, or cry, or just shake your head and move on to the next poem, hoping for a better translation there... Thank you for your patience, and f...

The girl has a Cathéter à demeure. It is French, but basically Latin, and means a catheter, that is a tube, that is left in the body for a long time. Not just temporarily  for the moment, just when you want to drain an organ of fluid or inject something. The elegant, the fancy, the French elegant name that sounds like an expensive French dish, despite the name, it is a permanent catheter, a constant source of bacterial growth. But now antibiotics are available. A miracle cure for bacteria. So the girl with the prune belly grows up on antibiotics. And yogurt.   Not yogurt this time, but chicken on her father's birthday in October 1968  #ThePruneBellyGirl #PruneBelly #PruneBellySyndrome #rare diseases #survivor #childhood #handicap #autobiography #disability #childrenshospital These poems are originally written in Swedish and translated by myself. So if the translation sounds weird - please just laugh, or cry, or ju...

  When the girl, the two-year-old girl, finally is allowed to escape being tied to the bed and is allowed to be down on the floor again, she must learn to walk. Again.   The red dress is still there!  But what to do with it?  #ThePruneBellyGirl #PruneBelly #PruneBellySyndrome #rare diseases #survivor #childhood #handicap #autobiography #disability #childrenshospital These poems are originally written in Swedish and translated by myself. So if the translation sounds weird - please just laugh, or cry, or just shake your head and move on to the next poem, hoping for a better translation there... Thank you for your patience, and for following my story! By the way - my lyrics sometimes sounds weird in Swedish too...

But at Karolinska Hospital in Stockholm, they have developed a method to prevent, to stop an improper,  an unauthorized, catheter withdrawal at night when no one is watching the girl. The nurse makes a loop of gauze and attaches her hands and feets to the bed rails. Right hand. Left hand. Right foot. Left foot. The little girl, the one-year-old little girl, lies on her back all night, tied to a St. Andrew's cross. Now she can't pull out the catheter. Now she can't do anything else either.   #ThePruneBellyGirl #PruneBelly #PruneBellySyndrome #rare diseases #survivor #childhood #handicap #autobiography #disability #childrenshospital These poems are originally written in Swedish and translated by myself. So if the translation sounds weird - please just laugh, or cry, or just shake your head and move on to the next poem, hoping for a better translation there... Thank you for your patience, and for following my story! By the way - ...

The girl is almost 10 months old. Diary entry: "After consulting Dr. Å. Andersson, the catheter was to be removed. This was done by the patient herself without our help." A few days later: "The patient has 'pulled' the catheter 2 more times herself." The girl is apparently teachable. A talented girl. Without a catheter, much time is spend sitting on the potty! #ThePruneBellyGirl #PruneBelly #PruneBellySyndrome #rare diseases #survivor #childhood #handicap #autobiography #disability #childrenshospital These poems are originally written in Swedish and translated by myself. So if the translation sounds weird - please just laugh, or cry, or just shake your head and move on to the next poem, hoping for a better translation there... Thank you for your patience, and for following my story! By the way - my lyrics sometimes sounds weird in Swedish too...