Emily M. DeArdo

writer

The Fiction of a Painless Life

CFEmily DeArdo6 Comments
Me with my best friend, Anne (on the right), after our First Communion Mass in April 1990. I had just turned eight years old. I wouldn't be diagnosed with CF until three years later. 

Me with my best friend, Anne (on the right), after our First Communion Mass in April 1990. I had just turned eight years old. I wouldn't be diagnosed with CF until three years later. 

I have almost died five times. 

This is what it feels like. 

It is very easy, for starters. All you'd have to do is...nothing. Just sleep more, let the energy and life flow away. It's silent, it's simple. It really is like falling asleep. It's so easy.

It's much harder to be alive, because in life, you have to fight for it. 

I have almost died five times. 

I almost lost my right arm. 

I've lost most of my hearing. 

I have almost no vein access, anywhere but via the port-a-cath that's surgically implanted in my chest. 

I've learned to give myself insulin injections. 

My parents and siblings know how to re-constitute IV meds. 

I've had an IV line bleed out the night before my Algebra II final. 

I've had skin cancer, epilepsy, cystic fibrosis, thalessimia minor, and a double lung transplant. I've had tuberculosis and an infection that only one other person in the world had had. 

I've been to the ER so many times that it's like Cheers

I've had pancreatitis eight times. If you haven't had it, be glad you haven't had it. 

I've had four chest tubes. 

I've taken pills every day of my life since I was two years old. 

I could probably give myself chest X-rays by now. 

I'm surprised I don't glow in the dark, due to all the radiation exposure I've had. 

I've been twenty years old and planned my own funeral. 

I've spent most holidays in the hospital except Christmas and my birthday. 

I use the word "contraindicated" like most people use the word "like". 

Every month, my mom pokes me with a needle and I don't hit her for it. :) 

I have coughed up blood. 

I have had 17% lung function. 

I have been in a medically-induced coma for two weeks. 

I've had people tell me that my CF treatments, which kept me alive, annoyed them. I've had people say injecting insulin is gross--to my face. I've had people ask rude questions, time and time again. I had a classmate tell me that there wasn't any point in me studying, because I was going to die. 

But you know what? 

I am still alive. 

And I love my life, even with all its imperfection, even when it would've been easier to just let go and sail off into the West like Frodo. 

But this life is exquisite, no matter what. 

This world isn't my home. I know that. But it's so beautiful. 

Because you know what's beautiful? 

That I'm freaking typing this. 

That I am breathing

That I'm going to see my brother get married. That I've seen my godson grow up--because there was a time when I thought I wouldn't. 

Standing in the Pacific Ocean. 

Learning to knit. 

Watching little kids smear Oreo crumbs on their faces. 

Editing. 

Writing. 

Snuggling in bed. 

Reading books. 

Tickling babies. 

Reading Robin Hood to enraptured small children and doing all the voices. 

Christmas shopping. 

Watching hockey games, and yelling at my team when they suck. 

Learning to draw. 

Eating a Duck Donut. 

Eating anything, at all. 

The couch I'm sitting on. 

Godless on Netflix.

The Outlander series. 

The Wizard of Oz.

Elizabeth Bennet. 

Pretty dresses. 

My sister's cat. 

My siblings.

Fish and chips. 

 

All of those things--all of those beautiful things--do not exist without the list of ugly things. 

There is no life without suffering. There is no life without pain. 

And yet, people try to limit it by killing people like me. By eliminating people with CF, or Down Syndrome, or by saying that assisted suicide, euthanasia, and abortion is the compassionate choice. That it's better to be dead than alive with a hard life. That it's better to not exist than to exist with pain. 

I will never believe that. And I will never stop fighting for my right to exist, for my right to be here and to live the life that God has given me to live. And I will fight for all the other people like me, who are told that we shouldn't be here, that our lives are worthless because they are painful, because they make other people's lives hard, because we suffer

Suffering has made me better. It has made me stronger. Without it, I would've been a pale imitation of myself. 

My parents didn't kill me, obviously. My parents never went to court and said that my birth was "wrongful". They never made me feel like I was a drain on them, even though at times I've felt that way. They've always told me that I am worth it. 

We are all worth it. 

If you think that living with pain means life isn't worth living, then what are you doing here? 

"Life is pain, princess," said Dread Pirate Roberts. He was right. 

But there is also so much beauty in it. 

The very chance to exist--to be brought into existence--the chance to have this life? This is everything. 

And if you don't understand that, I pity you.