Love in a time of desperation/ John Ratz [lyrics]

The body can decide to stop living in stages 
the slow death is the body whispering a quiet no no no 
until some vital part refuses to keep working 
some important piece of you does not consent to being alive anymore. 

The way I understand my sister's disease is that it attacks everything at once. 

I could write a list of symptoms but these days 

it looks like something turning off all of the lights inside her.

She's 23 and cannot see. 

She's 23 and cannot walk, cannot think. 

She's 23 and already looks like an abandoned building. 

So much of her has already decided to stop working. 

We live in a time of miracles. 

Medicine is the science of forcing your body to live wether it wants to or not. 

It is forcing you the body to bow down to you the mind. 

Because the brain is the only organ is afraid of dying. 

But I told you my sister's disease attacks everything including the delicate network of neurons and synapses that makes her a person and the slow collapse of her body losing its ability to function 

My big sister can't even decide wether living is worth it anymore. 

Once she lost a lot of weight, 

her jaw refused to work right. 

More food ended up down the front of her shirt that in her mouth. 

Her body weather hunched itself into a claw and for the first time in our lives there was less of her than there was of me.

My parents took her to the hospital and she came home a week later with a tube in her stomach. 

She eats from a bag now. 

No swallowing involve, 

just a slow mechanical work the pump forcing paste directly into her stomach 

we force feed her 

and I have to believe that this is an act of love in a time of desperation. 

There was no discussion of allowing this to be the end. 

My mother says the GTube was the first time it felt like betraying my sister's body in order to keep her alive 

and Christine didn't even get a saying in it. 

Sometimes I imagine she stopped eating on purpose. 

When she could speak she said the seizures felt like God  

stabbing a knife into her brain and twisting 

and I have to wonder if anyone ever really wants to be rescue back from an agony like that. 

Sometimes I love her so much I wish we could let her die. 

Someday another important part of my sister's body will stop functioning. 

I imagine a thousand nightmares for some terrible accident claims my parents 

and I hold her life in my hands and there's no way I would let her die. 

But I wonder how far I would go to force her to live 

and wether that is love or the stubborn pride insisting that as long as 

I can force her heart to keep beating I'll never have to say goodbye.