My friend and I are donating our time and skills and whatever to create a website for a non-profit group that’s raising money to help families with kids who have cystic fibrosis.
That was a terrible sentence, but it’s a terrible disease, so it doesn’t deserve any better.
Twice the families and I have tried to get together so I can take some portraits of the kids for the website. And twice all of the kids ended up in the hospital and we had to reschedule.
So today, instead of rescheduling again, I decided I’d go to the children’s hospital and take photos of the kids there.
It almost broke me. These kids … these kids live in the hospital. These little kids and their broken bodies don’t know any different.
And they’re so happy. They laugh like little kids are supposed to laugh. They have attitudes and their siblings say they’re annoying.
And they’re dying. The chances that they’ll ever be as old as I am now are very very slim.
This one kid … he’s five. He has cystic fibrosis. He’s also deaf and blind.
And his parents … they were so grateful and so happy that I was volunteering my time to take his photo. Because they don’t have the money for a proper family photo.
They bought him a new outfit, for their tiny child in the wheelchair who can only make out shapes and can’t hear and can’t breath.
They were so thankful. And they love their little child so much.
Another child, she was so full of life. But she was hooked up to IVs and other hoses. And the nurse was pounding on her back, because that’s one of the treatments for cystic fibrosis. But the girl was so sweet. When I asked if I could take her picture, she gave me a thumbs up. And she smiled through her oxygen mask. Her mother was so excited to have a photo of her and her daughters, she let them wear makeup. And they all did each other’s hair.
I took all of their photos. And I was fine; I held it together. I hugged everyone goodbye and said I’d see them later. Then I went to my car and just sat. I stared at the concrete wall of the parking garage for ten minutes collecting myself. Trying not to get emotional because my day wasn’t complete.
But now I’m letting myself think. And I’m so angry. It isn’t fucking fair that these little kids are sick. That they have an incurable disease which will cut their lives short. That they spend so much time in the hospital.
That the one kid isn’t only sick with cystic fibrosis, but that he’s blind and deaf and five.
It’s beyond wrong. It’s beyond unfair. It’s unjust and unright and unimaginable.
These families love their children so much, so unbelievably much. And they know their time is limited. They do everything they can to spend as much time with their sick kids as possible. But it isn’t enough. It can never be enough.
No child, no family deserves to live this way.
My heart hurts so badly for them. All I can do is give them a photo. I want to heal them. But I can’t.
I can only capture a moment. Make them smile.
But is that enough?
It turns out procrastination is not typically a function of laziness, apathy or work ethic as it is often regarded to be. It’s a neurotic self-defense behavior that develops to protect a person’s sense of self-worth.
You see, procrastinators tend to be people who have, for whatever reason, developed to perceive an unusually strong association between their performance and their value as a person. This makes failure or criticism disproportionately painful, which leads naturally to hesitancy when it comes to the prospect of doing anything that reflects their ability — which is pretty much everything.
But in real life, you can’t avoid doing things. We have to earn a living, do our taxes, have difficult conversations sometimes. Human life requires confronting uncertainty and risk, so pressure mounts. Procrastination gives a person a temporary hit of relief from this pressure of “having to do” things, which is a self-rewarding behavior. So it continues and becomes the normal way to respond to these pressures.
Particularly prone to serious procrastination problems are children who grew up with unusually high expectations placed on them. Their older siblings may have been high achievers, leaving big shoes to fill, or their parents may have had neurotic and inhuman expectations of their own, or else they exhibited exceptional talents early on, and thereafter “average” performances were met with concern and suspicion from parents and teachers.—
This totally justifies every excuse I’ve been giving myself from not doing that thing I’m supposed to do.