The Box

Published March 24, 2012 by Ashley

I haven’t kept up with this blog as I had planned to. School, work, on and on, have gotten in the way. Mostly, a boy named Chase  has gotten in the way. Chase is the nephew of my best friends. He is fourteen years old and dying of cancer. His hospice team arranged for him to go to the junior high prom. A local news station covered it and the video was posted to youtube.

One of my friends made an offhand comment that she would “love to see it go viral.” I decided to make that my mission… and it grew from there. I’ve been calling businesses, theme parks, schools, emailing churches, building blogs, twitter accounts, facebook…

It all went well until I decided to interview Chase and his father for CNN’s iReport. One meeting with Chase changed my life forever. I was paralyzed. My own presumption in thinking that I could have an impact. To think that I could ever make a difference. Getting Chase’s story to go viral vanished. Simply doing something to help my friends vanished. It was all about Chase. I was absorbed.

His father was hoping for a miracle cure. I latched onto the idea, determined to raise the hundreds of thousands of dollars needed… then I looked into the cure. I should have known, but it was bullshit. Utter bullshit. It is more likely to finish a patient off than to save them. My father in law told me that it was too late in any case. I refused to consider that. It is never too late. Surely Chase could live.

Now Chase is having hallucinations. The blog is getting some traffic. I have gotten some emails for Chase. I got a school to make him cards. His aunts are very pleased. They tell me that they are so grateful and that they will always remember this. I watch as their eyes hollow out daily. They look like they are dying with Chase. Their faces strain like they are fighting not to scream and their eyes are sunken and dull. Sometimes, looking into their eyes scares me. I’m not sure why. I think it is frightening to face that degree of grief.

And now I understand that grief better than I could have ever imagined before. I have held Chase’s hand. I hugged him and spoke with him. I love this child so much. I would die in his place. And I will never be the same again.

And now I know that nothing I do will ever be enough. It isn’t about his aunts anymore. It is about Chase. Nothing I can accomplish will ever be enough. I almost succeeding in getting him sent to the Wizarding World of Harry Potter. Now Chase is speaking to people who are not there. It is too late for Harry Potter. Too late for phony treatments. The only thing left to do is to watch Chase die.

He is not my relative, but I want to move into his house. He is afraid to sleep sometimes. I want to quit work and school and sit with him all night, singing to him. Making sure that he is not afraid. I want to be there for him. I want to see him again. He has so much trouble speaking now, but you can see him his eyes that he has so much to say. I want to sit on the edge of his bed and tell him, “Honey, I don’t care if it takes an hour for you to say one sentence. I’ll wait. Tell me everything you want to say. I’ll sit here forever if I have to. I’ll listen to every word.”

I can’t do any of this. It isn’t my place. I ask for news. I edit video footage. I update a blog and twitter and facebook and wait. I hope for news that Chase has slipped into a coma before he begins to suffer more. I wait for the phone call telling me that I was too late, just like with Chase’s trip to Florida. That everything is too late because Chase is dead.

Part of me feels so blessed to have had those few hours with Chase. Part of me is so glad that I have gotten to help him in any small way. And part of me wishes that I had never met him. That I had helped him from a distance, never getting a hug from him. Because Chase changed something inside of me forever. That comforting, distant place where you can safely store stories of suffering children. That little box that you can stick it into, to make it into an image or a story… that essential disconnect that prevents these stories from becoming flesh in your mind. Chase ripped that box out of me.

I will never be the same again.

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