Chapter 1
It was the second day of my holidays when I saw her for the first time. I spent my time at the beach. I like sunny, warm days with the hot sand at my feet and the sun on my face.
She was sitting with another woman in the small beach bar, at a table outside in the back. Both women were strikingly pretty, but she was a stunning beauty. She was tall, slender, and may have been in her mid-twenties, showing a charming youthful elegance. I was fascinated. I had never seen such a beautiful woman before. I couldn't help but watch her. The other woman noticed my looks and said something to her. I'm sure my beauty smiled, even though she didn't turn to look at me.
This was the moment that changed my life.
The next day, I made sure to be there at the same time. And yes, she was sitting there again, on that small bench, at the same table. This time, she was alone. A cup of coffee, a cake, and her mobile were on the table in front of her. But as long as I watched her, she didn't drink, eat, or even move at all. And again, she seemed to smile as she felt my eyes on her.
Her mobile rang, and again she didn't move, didn't answer. The mobile continued to ring, buzz, and slowly slipped off the table into the sand.
I went to her table.
"Good afternoon. My name is John. To be honest, I could stop looking at you, and your smile tells me that you aren't upset about me. May I join you?"
"Yes, –el –el," her mouth cramps as she tries to go on, "welcome. My na– na– name is Isa–," again a bad spasm of her whole face with some spit running out of her open mouth, "Isa– Isa– Isa–elle Isabelle."
Her sunglasses were about to slip from her nose due to the cramps. Obviously, speaking was hard work for her.
"May I offer some assistance? Your sunglasses slip off."
"Yes, thank you. Glasses o– off."
I took off her sunglasses and put the mobile back on the table.
"You missed a call."
"Yes, know. Sister. O– o–," she said with a bad spasm again, unable to close her mouth, "o– o–er there."
"Over there? Why did she call you?"
"Arranged"
"She's over there, and you arranged a call? I don't understand."
"Get your attention," she smiles.
"I a– a– a–," a spasm left her mouth open again, "I disa– disabled. Cere– cere– cere–ral –al," one more spasm, "–alsy. Di– di– difficult get attention." She got excited, and this didn't improve her speech.
"What is cere–ral –alsy?"
At this point, the other woman joined us.
"Hello, my name is Laura. I'm Isabelle's sister. May I explain something?
Isabelle has a complex form of cerebral palsy. In her case, it's a birth defect due to an interrupted oxygen supply during her birth, causing permanent damage to her brain. Isabelle can not control her skeleton muscles. Her arms and legs are constantly moving by themselves. Her arms and legs have some power, and without restraining her limbs, she would harm herself, beat and kick the people around her, and knock over everything she can reach. Her upper body muscles are moving less, but they are unbalanced and weak on her left side. She can't keep her body straight and upright and falls over without support. Her neck muscles are moving less too, but involuntarily. Isabelle can't control them, and can't balance her head. She needs to be strapped into a shell around her back with her head fixed into a head rest to keep her straight and upright. There are also some adapted supports attached where her arms and legs are securely strapped in. Isabelle can not move at all.
Isabelle's speech is very bad as she cannot control parts of the muscles in her jaw. It's difficult for her to close her mouth, and often it ends up in a spastic cramp of her whole face. Luckily, her tongue is much better. Isabelle can speak, but it's hard for her as she must concentrate to coordinate her mouth and tongue movements. She speaks slowly, single words with breaks, fighting for each word. If she fails, she tries again a few times, or she skips what she can't pronounce. Words with "b", "f", "m", "p" and sometimes "w" or "v" in the middle are a challenge. She can pronounce words starting with such vowels much better as she can use the short break before to get her mouth closed. Isabelle tries to speak as simply as possible, using simple words and incomplete sentences. As her problem is closing her mouth, it's useful if someone put a hand under her chin to help her. At least her face spasms less this way. Her speech gets worse when she is excited.
Isabelle perceives her body just like anyone else. Of course, it's her body, it's the one she was born into, nothing strange or separated from her, although she can't control it, can't use it, can't stop the wild involuntary movements of her arms and legs. It's the same as your heart; it's part of your body, part of you, even if you can't control the beats.
Isabelle feels good being securely strapped into her shell. Because she can't use her hands and legs anyway, she doesn't mind if her arms and legs are strapped down tightly. On the contrary, she feels safe in her shell. It protects her from hurting herself if her limbs are free. Unrestrained limbs are a thread for her.
The bad news is that there's no cure for cerebral palsy, but it's also not a progressive disease. But of course, her limbs get twisted and cramped more and more over time."
Isabelle wanted to step in here. Her mouth is open, and she fights for a word.
"Close"
I put my hand under her chin and she managed to go on.
"Much better, yes, exited, you, John," without an accident. She smiles again.
"Turn me around, see you"
Isabelle's dress covered her legs, but as far as I could see, she was sitting in a Lotus position, her lower legs crossed in front of her. I lifted her up and turned her as she wanted. Looking into her face was breathtaking. Yes, she's a beauty. I couldn't keep my eyes off her, off her eyes, off her hands, clenched in fists, moving involuntary, senseless.
Isabelle looked at me, examined me, and, luckily, I passed her checks, and she smiled again.
"You like –e –e," a massive cramp leaving her mouth open.
"Sorry Isabelle, I forgot to assist. I need to practice."
I cleaned her face, and with the help of my hand under her chin, she tried again.
"You like me?"
"Yes, I do. Sorry if I stared at you, but you are the main prize. I can't help."
"Used to. People stare disa– disa–ility disability, not me. You?"
"I looked at you, of course. Silly question. People are silly. Be sure it's you I'm looking at. Or don't you have a mirror?"
"Ha– ha– have. Believe you."
"What's about you? Do you like me too? Can I do more than hold up your chin? Some more assistance in any way?"
"Yes, like you. Yes, –o –ore more, s– s– s–ell s–ell you. Hand nose."
"Sorry, I don't understand this. Hand nose?"
"want s–ell s–ell smell your hand."
I did as she wanted.
