Maddie, Lewis & Clark Trail State Park
We drove an hour out to a tiny park in the wheat fields so I could photograph Maddie under the trees in the setting sun and when we got there, I realized the light wasn't what I was hoping for and there were too many fences and picnic tables, and I almost said, "Never mind. Let's go home."
And Maddie was tired. She hadn't been able to sleep, and I knew she was hurting, because Lyme Disease makes you feel like you have the flu every single day. But she'd gotten out of bed and put on a dress and come all the way out here with me because she believed in me and my art and also because she needed to tell her story.
I thought, This isn't going to work. I thought, I made a mistake. I'd waited all day for this, even though I had to go back to Seattle that night: I would have to drive over the mountains in the dark.
Maddie said, "It's okay. Whatever you'd like to do, it's okay."
So I chose two spots of light in the shadows at the edge of the trees and I said, "I need you to stand there, and there, and then we'll go home."
And she stood so bravely.
"There are lots of hard things.
You kind of get used to not knowing what to expect day-to-day. In a weird, not-used-to-it kind of way."
"I think perhaps the hardest part is to see people become disinterested in who you are, or become skeptical about your illness. Or even friends who never really understand, in the end, and they stop asking you to go out to things because they know you’re going to say no.
You say you can’t do something, and people say, 'Not again! Aren’t you well yet?'
And I have to say, 'No. I’m not going to be well.'"
"They say, 'You don’t look sick.'”
"You have to change your expectations for yourself.
You have to change your expectations for your whole life."
"Everyone talks about how you plan, and then life happens. But I can’t even plan to not plan."
"One of the really difficult things is being unreliable, and feeling like you’re a disappointment. You have to remind yourself:
I’m canceling plans because a bacteria is making me feel this way.
This is a not a detriment to my character."
“My hope is different from yours. It has to be.
I hope that I am able to accomplish the things I want to in life, like school and getting a career, going into art history: I want to accomplish these goals in spite of my illness.”
"And I also hope to find a life that I’m joyful about every day."