I've got the talking stick, what am I supposed to talk about?
The hours are slow. Most of the time I just stare at the ceiling. It hurts to even breathe.
This is the side of chronic illness that isn't so pretty. It's not butterflies and rainbows and positivity or even brutally honest jokes on pinterest laden with dark humor. This is real. This is lying in bed for hours at a time when it hurts too much to get up.
It's just a flare, I tell myself. It will get better, right? One day out being normal and I'm in so much pain it hurts to breathe, or move, or even think sometimes.
Am I supposed to talk about my feelings? I don't know... I'm good. I feel good. My feelings about being sick... I don't really have any feelings about being sick
Some days are worse than others. Some days it feels like the only noise I can make is harsh and fierce and unprecedented. I just sit there and cry. Not because I'm sad. I'm not sad. I'm just... tired.
I'm tired of living in this body that's broken down and tired of people not understanding and tired of having to defend myself.
Some days I look in the mirror and barely recognize the girl I see there. She's so pale, and her hair is matted to her head and she has no makeup on. Her eyes are kind of empty and sad. She looks fragile. She doesn't look like me.
But, then again, I don't know what I look like anymore.
I can show you. You can touch it, if you like.
See this scar here? This is from where I cut my knee open when I was learning to ride a bike.
And this one here? That's from when he broke my heart.
And this one, this one right here, that one is from the IV in my neck I had when I was a baby.
That one is from the surgery
And that one is from the monsters, the little ghouls that lurk in the dark places of my soul. You don't see them, really. You don't see their scars. But I promise you they are there. I promise you sometimes my thoughts can do more damage than the slice of a scalpel.
They told me I'd be getting sick but actually I'm just getting awesome
Considering everything I'm lucky, right?
I have an amazing support system, fabulous doctors, and the chances of me dying from my disease is pretty slim.
I have this little book I keep beside my bed, and I write down things I'm grateful for. I'm at 600 or something like that.
Want to know what the first thing I wrote in it was?
My crazy sexy chronic illness.
Because I'm grateful, I am. I'm proud of who I am and I wouldn't want to change.
Not to brag or anything, but I think being sick has made me awesome. It's who I am. Or maybe it's just showed me who I am.
I'm a writer, a dreamer, a daughter, sister, niece, cousin and friend
I'm a child of God
And, oh yeah, I just happen to have a couple of chronic illnesses
and I'm kind of awesome
Sure, I know that my body is trying to eat itself, but what if it isn't? What if it's changing?
I think I might be turning into glass. I think all my bones and all my muscles and all my skin are turning into glass. Hard, smooth and clean. Fragile, yeah, but strong.
I watched this movie once, about a little glass doll. She was broken, her porcelain legs shattered and the edges all jagged. The powerful wizard, he fixed her using some glue.
She turned out to be really brave. She was made of glass, yeah, but she was strong.
You'll think I'm nuts, but I've got the talking stick