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, the hot sand at my feet and the sun on my face.
She was sitting together with another women 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, may be in her mid-twenties, showing a charming youthful elegance. I was fascinated, I never saw such a beautiful woman before. I couldn’t help watching her. The other woman noticed my looks and said something to my beauty. I’m sure my beauty smiled, even though she didn’t turn to look at me.
This was the moment which changed my life.
The next day I made sure to be there at the same time. And yes, she was sitting at the same place, a small bench, at the same table. This time she was alone. A cup of coffee, a cake, and her mobile on the table in front of her. But as long as I watched her she didn’t drink or eat or even move at all. And again she seems 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, buzzed, 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 the whole face with some spittle 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 it was a hard task for here to speak.
“May I offer some assistance? Your sunglasses slip off.”
“Yes, thank you. Glasses o- off”.
I took off her sunglasses of and put the mobile back on the table.
“You missed a call”.
“Yes, know. Sister. O- o-“, again a spasm leaving her mouth open, “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, mouth open again, “I disa- disabled. Cere- cere- cere-ral -al”, a spasm again, “-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 elder 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 in her brain. Isabelle can not control her skeleton muscles. Her arms and legs are constantly moving by themselves. Her arm and legs don’t have much power, but 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 unbalanced, weak at 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 involuntary, Isabelle can’t control them, can’t balance her head. She needs to be strapped in a shell around her back with her head fixed in 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 can not control part 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 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 simple as possible, simple words and incomplete sentences. As her problem is to close her mouth it helps when someone puts a hand under her chin. At least her face spasms less. 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 in, nothing strange or separated, 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 is part of your body, part of you, even that 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 arms and legs are strapped down tightly. On the contrary, she feels safe in her shell, it protects her from herself, from hurting herself if her limbs are free. Her limbs unrestrained are a thread for her.
There’s no cure for cerebral palsy what’s the bad news, 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, she smiled again.
“You like -e -e “, a massive cramp leaving her mouth open.
“Sorry Isabelle, I forgot to assist. Must train it”.
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 a 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.
“Good, like, you s- s-“, followed by a few bad spasms and spittle, “smells good”.
“Clean”
I cleaned her face once more.
“Holidays?”
“Yes, I like the sea. Arrived yesterday and I’ll stay two weeks.”
“Yes, holidays too. Like -a -a” with spasm in her face because I forgot again to support her. With my hand under her chin she tries again “Like warmth. Good. Cold cra- cra- cramps, pain. Like hot sand, water.”