I Know Why I Am Sick

This is an archived post that was originally published at beyond-terminal.com

After making my first post, I didn’t sleep well at all. It’s not for lack of encouragement. I’m humbled by the number of friends who have applauded my effort and courage.  I am full of gratitude.

Why the unease then? I’ve kept this story under lock and key for so long. Although I know as an adult that I didn’t cause my illness, I held onto the belief that it was somehow my fault for longer than I care to admit. I was full of shame for not being stronger. For not preventing it from happening.

Thinking that I was to blame was the only way I could make sense of how I had been transformed from a top student and athlete to someone who could barely function. In the span of a year, I had largely lost the ability to walk, talk, read, and write. Nothing about this made sense. Unless I was inherently a “bad person.”

__________

Here is an excerpt from the third chapter in my book. Note that I have chosen to write in present tense. After many false starts, I realized that I was too detached if I wrote in past tense. To be able to capture these moments with emotion, I needed to pretend as though I was reliving them in real-time. I am 11-years-old in this scene. It had been a month since I was diagnosed with a terminal disease.

It’s after 9:00 p.m. on a cold Sunday in mid-December. My parents have decided to take Dr. Snow’s advice, and I’m scheduled to have a bone marrow biopsy and spinal tap in two weeks.  

I have no idea what to expect. What is bone marrow anyway? Is it the stuff that’s inside my bones? How are they going to get it? And why do I need a spinal tap, too? Shouldn’t just one of these, what Dr. Snow calls “procedures,” give them what they want?

All of these questions lead to more questions and make my heart race. I can’t fall asleep. I need to get a good night’s rest though. Not only tonight, but all the nights leading up to December 30, when I’m scheduled to have these two procedures. I’ve heard my parents talk about how concerned they are that I’m having these done when I’m already so weak. To think that I could become weaker? Does this mean I won’t be able to walk at all anymore?

Seven, fourteen, twenty-one, twenty-eight…I keep counting and counting. This helps stop the questions from coming, one after the other. But the second I pause and have to think about what comes after 147, more unwanted stuff makes its way into my head. For some random reason, I find myself thinking about this girl Christina.  

She was someone who was in my first-grade class, and she always wore this dress with faded flowers on it. In fact, she wore this dress every single day. Monday through Friday. By Wednesday, the dress stank, and so did she.  

As I lie under my comforter and sheets, I picture in my head a game that the kids would play on the playground back when we were in first grade. Just like it was yesterday, I can see Tommy touching Christina before running over to Charlie. And then I can see Tommy passing the germs off to Charlie. Now I can even hear Tommy yelling, “Christina germs! No backs! Christina germs! No backs!”  

Here I am, in my bed, five years later, and these words are so loud in my head that I’m tempted to cover my ears with my hands. But I don’t, because I have this weird feeling that being able to see this is important and somehow connected to why I got sick.  

So I keep the picture in my head, and while I lie there, with my heart beating fast again, the picture gets bigger and bigger. I can now see where everyone’s standing — on the playground tires, over by the baseball field, on the blacktop. I can even see myself. There I am, standing on the blacktop with my best friend while I wait in line for my turn to do double-dutch. There I am, watching Christina run for her life. I’m just watching while this poor girl runs around in circles.

It’s at this moment that I know. I know why I’m sick. I’m being punished for not standing up for Christina. For not protecting her. For not doing something to stop the teasing.

“Mom!” I scream. “Mom!”

My mom hurries to my room. “Honey, what is it?” she asks. “What’s going on?”

“I know –” I tell her, as tears roll down my cheeks. 

“Know what?” my mom asks.

“Why. I’m. Sick,” I say, pausing between each word as I think about what my mouth needs to look like for me to be able to make the right sounds. I usually don’t bother talking these days, but this time I think it might be worth it. Worth all the effort.  

My mom sits up straighter. She knows what a big deal it is that I’ve strung together this many words. It’s probably been months since I’ve done this.

“Oh, sweetheart. We’ll figure it out.” She gives me a big hug. “I promise.”

I shake my head in response. No. No, I have it figured out. I’ve got the answer. I didn’t protect Christina. But if I’m given the opportunity to find her now and ask for her forgiveness, maybe, just maybe, this sickness might begin to leave my body. It’s too hard to say all of this though, so I have to pick and choose what I’m going to say. I run through the options in my head. When I’ve figured out the seven best words, I once again concentrate on what my mouth needs to look like before saying each word. “I’m. Sick. Because. I. Didn’t. Stop. It,” I say.

“Stop what?”

“Teasing.”  

“Honey, what does this have to do with you getting sick?”

“Every-thing,” I say, pausing between the syllables.  

“Oh sweetie, oh sweetie,” my mom says as tears pool in her eyes. “This has nothing to do with you getting sick.”  

I shake my head, not believing her. In fact, after my mom goes back to bed, my head starts racing again. I start thinking that we need to hunt down Christina and figure out where she lives. Sure, she moved after first grade and didn’t come back to school. But I remember her last name. And we have a phone directory, right? What if my mom could drive me to wherever Christina lives now? What if I could apologize to her in person? Say I’m sorry that I didn’t stand up for her, that I didn’t try to stop the teasing. If I could do this, I think the sickness in my body would slowly start to leave. I really do.

__________

This past week I have continued to research literary agencies. Manuscript Wish List has been especially helpful for narrowing down which agents are interested in narrative memoirs. What has been surprising is that every literary agency has their own specifications as to how they want material submitted. For one agency, the agent wants my query letter along with the first 25 pages of my book; for another, the agent wants my query letter, a synopsis of the book, and the first ten pages; yet another is interested in up to a 25-page business proposal, including my marketing plan (yikes!). I feel like I’m applying to college all over again!

Anyway, I bring this up because I also wrote a “blurb” as part of this process. For those of you who are curious to see more of an overview of my book, you can check out this blurb on the “About” page.