Chaperter 1
Becker muscular dystrophy is a disease that arrives without warning, without saying anything, like an unwanted visitor that possesses your body in silence, little by little, and you don’t realize it’s invading you.
With me, it started at 20 when I was in college, just mild muscle fatigue. I began to be clumsy at running, then I had trouble climbing stairs, it seemed strange when I stopped carrying heavy objects, I could no longer lift my girlfriend in my arms at 24.
I remember that after a work meeting, on a rainy afternoon, I went for the results with the neurologist they referred me to, and what killed me wasn’t the diagnosis but his words when he explained what was going to happen to my body.
“You’ve managed your business ignoring the warning signs, but biology doesn’t accept extensions. The biopsy results and genetic study are clear: you have Becker Muscular Dystrophy (or a Limb-Girdle variant). It’s a failure in your cells’ infrastructure. Basically, your muscles lack the necessary ‘reinforcement protein’ to repair daily wear and tear.”
I started to break into a cold sweat, my body tingled and then I couldn’t hear anymore, I just thought about my girlfriend, my business, my family, my life.
“You’re a man who makes data-driven decisions. The data says your body can no longer be your primary work tool. From today on, your most valuable asset is your intellect and your voice. If you cling to the idea of ‘appearing strong’ by walking when you can no longer do it, you’re going to break your femur in a fall and we’ll lose 5 years of functionality in a single day.”
I felt like I couldn’t breathe, I collapsed in the chair, and my ears were ringing. Suddenly I stopped hearing the doctor.
First I started using a cane, then it was no longer enough. I sold my apartment and bought a single-story house. I was always brilliant in business, my father’s company was the turning point to grow and diversify. My father died and I was the one who took command at my young age. The better business went, the more my strength deteriorated.
When the wheelchair arrived, I already hated my existence and everything around me. I locked myself in my world and let life run its course. I threw everyone out of my life and some left on their own.
What happens when a man is a prisoner of his own body?
This is my life.
Medical File
Patient Context: Middle-aged, single, no family present. Difficult personality, strong or unpleasant character, which has caused everyone to distance themselves. Severe disability, probably from muscular dystrophy in advanced stage (Becker). Minimal autonomy: can barely move two fingers, doesn’t use technology, has no social life or support. 100% dependent on his caregiver, who controls his routine, hygiene, feeding and physical wellbeing.
The Caregiver: New in his life, but has already become his only human contact. No one supervises her work. No one really knows who she is or what she does.
First Days with Her
—My name is Aridne.— At first, she just arrived with a white coat that she never wore again.
Now she wears shorts that barely cover anything, t-shirts that slip off her shoulder, and goes barefoot. Everything about her seems casual, as if she doesn’t realize her clothes stick to her skin when she sweats, or that when she leans over to adjust the pillow behind my neck, her cleavage brushes against my face. Maybe she knows, but she doesn’t say anything. And I can’t say anything either.
I can’t even hold her gaze, because I don’t have that damn option: I’m trapped in this body that can barely move two fingers and my mouth that only manages to spit out single words if I’m lucky. But my eyes... those still work, and she knows them better than I do.
“Are you comfortable like this, love?” she whispers in my ear as she adjusts the pillow.
Her voice is... low, sweet, as if she’s in no hurry to go anywhere. As if enjoying being here, by my side, were her only task.
The first time she called me “love” I felt disgusted. I thought she was mocking me. Now... she says it like that, so close to my ear, so slow... that I feel how my skin bristles in parts I thought were asleep.
She bathes me every morning. Without gloves. Without shame. The hot water runs over me while she lathers with soft, almost lazy movements, as if she were caressing me and not cleaning me.
Once, while drying me, she left the towel between my legs, leaned over and let it slide right along the base of my member, without looking at me.
I said nothing. Neither did she. But she looked into my eyes. Smiled. A smile so neutral it disarmed me.
She’s not cruel. That’s the problem. I can’t hate her. I can’t accuse her. I don’t even know if she does it on purpose. She’s kind, perfect, warm. Almost maternal. But there’s nothing maternal about her curves, or how she sits next to me while eating fruit and lets the peach juice drip down the corner of her lips. Or how she describes it to me:
“Today it’s sweet... but I’ll give you a juicier one,” she says, and then sucks the pulp and smiles brazenly without being so.
Sometimes, when she puts me to bed, her fingers brush against mine. She takes my hand. Caresses it as if I still had strength there. And then I feel how my whole body responds, from within. Something awakens, something I can’t contain, that I can’t release, that I can’t... fully understand.
Am I aroused? Am I grateful? Am I humiliated?
I don’t know. I only know that today, when she entered the room without a bra and whispered that she would put on soft music while she showered, something in me... collapsed.
Because she doesn’t look at me like a man. But not like a patient either. And I... I don’t know what I am anymore.
She Knows
I can’t take it anymore.
It’s not physical, though it is that too. It’s worse. It’s internal. It’s a need without a name, without form, like a hunger I didn’t know I could have like this, at this stage of my life, in this chair, with this body... dead in almost everything, except what matters.
She enters as always: light, perfumed, carefree. She’s wearing a blouse that falls off her right shoulder, revealing her back. The shorts are so short that sometimes I think I can see beyond. But I never know if I’m the one imagining too much or if she’s really playing with me. And that’s the hell of it: that I can never be sure.
