Monday, April 27, 2015

anywhere I would have followed you

I often think about when I will be able to go running again. I imagine waking up at 6 am, tying on my shoes and heading down the gravel alley behind my house towards Oakland Cemetery. Mid run, I stop on the west side of the cemetery where the city skyline is visible, breathing in the quiet. When I thought about this today, Kylie Myers came to mind -- Kylie singing in heaven with a strong voice, laughing and making a scene (every 12-year-old's right), hugging her friends in the big, all-encompassing way that I've heard was her style. She couldn't always do that here -- she was limited by what her body would allow.

If I were to make Kylie Myers a body, it would be very different from the one God made for her.  Hers didn't reflect the unstoppable and energetic girl I've heard about from my mom. If I made her a body, it would be strong and whole and still here. But I can't, and I have to believe that the one she had was best. Maybe the cancer was part of making her into the girl I've heard described. A girl that comforted her parents during her treatment and that didn't give up hoping. It all leaves me wondering how much the state of our bodies determines our personhood.

My mom called me a liar today. She was right. I was in severe pain -- struggling to bend my wrists and knees. I shuffled into my doctor's office and my mom took a seat in the waiting room while I signed in. After a couple exchanges, the receptionist asked me if I was okay. I forced a smile, "Just really tired." The second after I responded to her, I heard my mom hollering across the room, "You're lying! Tell her the truth. That's a lie!" I gave my mom a nervous laugh and quickly finished signing in, silent and awkward.

I believe in honesty. Not the kind of honesty that has me trampling on people with every one of my thoughts and feelings. But the kind of honesty that stops eluding personal questions, volunteers information about myself, and dares to ask friends the questions that crack their souls open. Unfortunately, believing in honesty does not mean that I'm good at it. I could get an award for being able to change the subject flawlessly when a friend asks me a personal question that I don't want to answer. And yet, I believe that I'd be a healthier person if I would tell the truth. But I don't understand how to be sick and to be me. No matter how much I want to believe it is part of my story, I separate the two.

We call chronic and terminal disease 'evil' and 'foreign'. We run 5k's and wear rubber bracelets and dump ice water on our heads to raise awareness and fight against them. We make disease into the enemy and believe that if we were to eradicate it completely, we would be more whole. And at the same time, it is commonplace to believe that trials make us strong, beautifully wise, and faithfully persevering. Resilience earns respect. We trust someone more when we know that he or she has hurt deeply. So should I remember Kylie with the cancer or without it? Can the two be separated if they were together at the end, and is that even what Kylie would want?  If the hardest, darkest, scariest things are also the birthplace of the most beautiful things, for what then do we pray?

If we continue to see diseases as evil, are we making God smaller?  I'm having trouble getting behind the aim to rid the world of evils like cancer because I want to believe that there is good in it -- that it was somehow intentional. Maybe then the possibility of another painful day tomorrow won't overwhelm me. Maybe then there would be something okay in Kylie missing her Broadway debut and Barbara not standing by for Norah's birth.

My disease is literally a part of me. My body is attacking itself from the inside out. It is my flesh and blood that are out of control. A year ago, I wrote that there must be a reason that Barbara died, but that I don't need to know it. I forgot to add that there must be a reason that I'm in pain, too. I guess I want to know if it's okay to mourn my loss when it's so much of who I am now. My mistake could be assuming that 'strength' looks like not letting the pain get into my spirit, when really that is the entire point. Because the latest, arthritic, nonathletic version of myself actually cares for people. She cries when she sees someone in physical pain. She understands anxiety and how it can close the world in around a person. She has patience for anger, and is committed to helping people grieve injustice.

Maybe there aren't 'versions' of us. And maybe grieving looks like honesty -- actually telling receptionists I feel poorly when I do. And not pretending like it doesn't hurt to walk, when it does. I wonder sometimes if life is a progression of us growing in our desperation. I don't understand it, but there is hope woven into admitting when our hearts are breaking. I want to get to a point where I'm not talking out of both sides of my mouth -- where I'm not praising trials for the character and bravery they build, but then cursing them for the pain. I want them to only be one thing, no longer both good and bad.

I don't want to be ashamed when my body limits me. I don't want to feel like something inside me is broken all the time. Because shouldn't hope heal it all? I think I finally get what we mean when we say that God heals all our diseases. It isn't literal. Obviously, disease has taken people that we love away and it won't stop while we're here. But we are healed because somehow it has been made good. Honestly, I don't yet see how with Barbara, and definitely not with Kylie, but I do with myself some days. And for now, that will have to be enough.

I know there is mystery. That the world isn't black and white and that cancer can create pain and beauty, together. I know. I know that I can hate disease and be thankful for it at the same time. But I'm not sure I can fight alongside the masses for the cure. I don't want to feel the damage all the time and I don't want to expect this world to be whole. I think it's too hard for my heart. I would rather trust that the good that comes from it will sustain us. And that the hope will get us through this world into the next one.
http://thetruth365.tumblr.com/post/104130999857/awesome-news-our-upcoming-public-service
Kylie on Broadway.