ThePruneBellyGirl

Later on, when she is no longer bedridden, tied to the bed for long periods, her hair, the girl's hair, can be allowed to grow and become long. And she can have a ponytail and braid her long, thick, beautiful hair. Yes, in time, far in the future, she can compensate for the short, the super short bedbound hairstyle, when her hair has grown out and become so long that she can donate her long hair to wigs for children with cancer. She has an organ, a healthy organ, that grows back and can be donated time and time again. To some other sick girl. Maybe she should write an organ donation certificate for her hair, when she's dead and doesn't need any hair anymore. Neither long nor short.   #ThePruneBellyGirl #PruneBelly #PruneBellySyndrome #rare diseases #survivor #childhood #handicap #autobiography #disability #childrenshospital These poems are originally written in Swedish and transla...

If the hair is cut short it doesn't get tangled when you're bedridden, like if you have long hair. So the girl's hairstyle is adapted to a hospital bed. One day, the father's hairdresser is going to cut the girl's hair. She gets a short haircut. A very short cut. When the mother then says - Come on Mariana, we'll go. Then the hairdresser turns pale and says: - Is that a girl?!   #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...  

A hole. Round. Dark. The girl looks curiously at the hole. There is a smell coming from the hole. She sniffs. Expectantly. Trying to reveal the smell. A nurse sticks a finger into the hole. And lifts the stainless steel cover that has arched over the plate on the tray. Which was hiding what was on the plate. And which is now revealed. Meatballs!    In the kitchen at Karolinska Hospital This is the girl's only memory from her early years in hospital. Her only memory. Completely her own. Not something that was told to her. Not a memory from a photo. So it is not pain that the girl remembers. Not the injections. Not the farewells. She remembers the steel cover and the exciting moment before the food appeared. Like a host envelops and hides its true body. One day God the Father and the Son will stick their finger in the hole. Lift the lid. And everyone will see what has been hidden under t...

Hospital baby cribs have side rails that are easy to raise and lower. A strong steel fence around the baby in the bed. When the girl with the Prune Belly years later showed photos of herself in the hospital baby crib, and told her boyfriend that if we ever have children, I want a bed like that for the baby. Then he looked at her as if she were crazy. To him, the bed looked like a cage of horror. A prison. For the girl, the bed was security. Her own world. Her protection from the outside world. It wasn't she who was trapped, but the world that was shut out.   #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... Th...