So I woke up this morning at 6:40 am (before the alarm clock) to a surge of creative energy. That was a first...so I went with it. I ran to a paper and pencil to get my thoughts down and what came out was six small poems that I'm actually pretty fond of. I thought I'd share one today...
Things We Teach Children
We don't know that we teach our children:
beauty's a ticket home,
it's the soft thing we want to lay beside—
the bread & butter, and somehow
it's what we leave behind.
And now I'm told to accept these pills
& my pale, moon face
because it's that or my breath; my chance to walk.
And would you believe
I had to think it over?
We teach our children to stop breathing.
I wish I were the kind of person who wasn't fazed by changes to my appearance.
But I'm not.
Here is a photo of me and one of my best friends, Vicki, when she came to visit in August (one week on prednisone)...
And here is a shot of us from this past weekend in Vermont (after 2 months on steroids)...
As I wrote about here, the prednisone I've been taking in the interim between two medications has caused some pretty intense side effects (none of which are that pleasant or attractive). I can joke about it all I want - humor really has been an awesome coping mechanism these days - but this weekend I was feeling pretty bad about myself. I recognize that it's okay to let myself be a bummed out 24 year-old girl.
I know I have bigger and badder things to worry about right now as I stand up to this brutal disease, but I'd be lying if I said this was just rolling off my back. It's hard to be given a choice between walking and breathing and severe changes in my appearance. Obviously I'll choose walking and breathing any day, but that doesn't mean I'm not struggling with this. I just have to remember this isn't permanent; I have to trust that I'll find the right medication for my body soon and this will all be a distant memory.
As always, John has been extraordinarily supportive, claiming he doesn't even notice. While it may be "love goggles" or just his sweetness talking when he says I'm "perfect", it means everything that he's my partner throughout all of this. He makes me feel desired and cherished every day (moon face or not). We just seem to get closer and I'm infinitely grateful that we've found each other. It really feels as if we could take on the world.
Thank you all for reading and allowing me to write; for being there through this journey. I'm wishing you all pain-free days.