Thursday, November 28, 2013

We are all full of the color that has not been dreamed.

Ducking out of the 8 degree weather last night into the subway-level tunnels at Mayo, Mom and I started making a "thankful for" list. At first we were kidding, but somewhere after "last nights pizza calzone" I realized how much I needed the list. In theory, Mayo is a hopeful place with a lot of answers. But it was a dark place for me and mom. Everyone was sick, all around us. We spent over 10 hours waiting on an appointment we weren't sure we'd get. Every time I passed someone underweight or tired I wanted to ask if there was hope for them, and in turn, for me. It was lonely - like you're set apart from the rest of the world because of your illness.

I joke when I say it reminds of District 13, but I really do wonder if the author of the Hunger Games ever spent any time at Mayo. It always felt like we were underground because it was too cold to venture outside and all the buildings are connected by underground tunnels. Although parts of the building are beautiful, it is still sterile. They give you a schedule of your week with a barcode on it, and every time you check in for an appointment you scan it.


But there were also good parts - like the pianos scattered throughout the hospital campus and the large windows in the waiting rooms that overlooked the city. And I left with a lot of what I'd hoped for - a doctor who is on my side and series of tests that may provide some answers.

So here's the list.
1. Doctors that are listening and aren't afraid of a case that isn't textbook. And the hope that some day soon I'll have a diagnosis that makes sense and is manageable in the long term.
2. Taking turns with mom on who the sick one is (so I don't feel so broken) and watching her shuffle down the hallway at a ridiculously slow speed, faking a cough, when it's her turn. She's always been a good actress.
3. Telling my nurse as she removes my IV that the process always makes me think of the tree in Avatar. And seeing the confused look in her eyes right before she bursts out laughing - telling me she'll think of that every time from now on.
4. Sitting down on the marble steps in the lobby Tuesday evening beside my mom, listening to a woman play the piano.
5. Scoring a consultation with a Rheumatologist after 10 hours in the waiting room.
6. My sweet nurse rubbing my hand through my entire liver biopsy - she made me feel safe in a very foreign place.
7. Looking my Rheumatologist in the eyes (who the receptionist insisted looked like Sean Connery) as he explains that none of my symptoms surprise him and yes, even without a solid diagnosis, he's confident he can put my symptoms in remission.
8. "I'm not here to give you drugs that will make you live 10 days longer, I'm here to give you a good life." - Dr. de Groen
9. Finishing the tests and appointments two days earlier than expected, and Dad's amazing skills of persuasion to change our fight plans from Saturday to Thursday to get us home for Thanksgiving.
10. Sitting around the Thanksgiving table tonight at the Brawner's house, sandwiched between my parents, with the sweet reminder that even though we aren't related, the people around me are my family. And I'm home.



Sunday, November 24, 2013

if you can't get what you want, you learn to love the things you've got.

I feel like I need to write something about my upcoming week. Maybe just to document it for myself because this blog has been a lot about my illness and my life in the midst of it, and this week is a big part of that story.

I'm headed to Mayo Clinic tomorrow. I'll be in Rochester, Minnesota for the next 7 days praying and hoping that they find something that Emory hasn't.

I don't really think they will. Autoimmune diseases are a mystery and even when they have a real name that doesn't mean there is much hope for curing them. But there is something about knowing that the best doctors in the world may look me in the eyes and say they don't have an answer that brings hope to my heart.

I think a lot about people with cancer. About how they are fighting a mysterious disease that's stuck inside of them, that they can't control or battle without breaking their body into pieces to cure it. I've got to say, I feel a lot like that. There is something inside my body that's working against me and no one can figure it out.

Maybe Mayo will. Maybe they won't. Maybe I'll board the plane next Saturday knowing that my symptoms will always be a mystery. But I'll also know that I'm part of the research now for other people like me that don't know why their body isn't on their side anymore. And then maybe someone won't feel as alone.

Paige told me today that her illness has helped her distinguish between her sickness and who she really is. I used to fear that I'd be defined by being sick. It felt that way in college. But Paige is right - somehow my sickness has helped me see who I am apart from it, and how nothing about it defines me. But I could use a little prayer this week that I'll believe my diagnosis isn't all of me. Because I'm scared my heart can't handle this mystery forever.

Mayo has been a dream for awhile. I'll focus on that.


Sunday, November 17, 2013

let the words fall out


I first heard about this book around a table with five girls I didn't know, nibbling on cheese and drinking wine and listening to my beautifully eccentric friend, Carolyn, read quotes she had jotted down on notecards. She had collected the quotes over the previous couple months - mostly from books she had been reading that she found insightful. They were a starting point for conversation, and she called our time that night Curiosity Club. As we read the notecards aloud and shared bits of our stories, I listened to the questions that have been burdening me over the last two years be asked back to me five times, in five different voices. Questions about why church doesn't seem as relevant anymore, when it used to be the one place that felt like home. Questions about where women belong in the workplace and church as gifted leaders, teachers, and thinkers. Questions about how Christian communities can still be unwelcoming to our gay and lesbian friends while claiming the gospel. Questions about how our parents’ generation can feel so sure about certain parts of scripture when we see so many blatant inconsistencies. And questions about our deep longing for the Church to admit that we really don't have anything but the basics figured out.

And then the inevitable fear, what do these questions say about my belief in God?

I heard about Rachel Held Evans that night, and I went home and ordered Evolving in Monkeytown because Rachel sounded a lot like me. As I read, I came across a statement that I wish we'd had that night. "When we know how to make a distinction between our ideas about God and God himself, our faith remains safe when one of those ideas is seriously challenged."

At some some point in the last 25 years, there was a reaction against mystery in our understanding of God. Christians felt like they had to scientifically prove the existence of God or else he'd cease to be relevant. But I think, in doing so, we lost so much of Him. We made him so solid that we forgot about his tears and his poetry, his creativity and mischievousness, his humor, and his frustration over our stubborn willfulness to figure everything out. I think there is a lot more mystery to God than we allow. For me, it is without mystery that He ceases to be relevant, not science.

I grew up in a family of ideas. I'm realizing now that most of my peers did too. As Rachel puts it, we had all the answers before we even had the questions. In some ways this has been crippling and has made me angry. But it has also given me the courage to uncover what I believe about everything. It's like when you tell a kid not to do something and out of curiosity he/she does the exact opposite. We don't react well when we are told what not to think - especially when we are not given a full reason as to why. It makes us wonder what else is out there. With all our questions pre-answered, our parents created the perfect environment to yield a generation of reckless thinkers. And now we are asking a lot of questions that aren't safe to mention in church. But the problem is...when they aren't received well or taken seriously we aren't willing to stick around just because we “should.”

I'd venture to say that my peers and I have witnessed far more pain and horror in this world than any generation before us. Definitely not firsthand, but due to the technology in the world we are aware of evils and catastrophes in real time, and have unlimited access to the ones of the past. They are evils we can't reverse or heal, no matter how many years or dollars we pour into the broken-down places. We are a generation of thinkers, and we are also a generation devoted to causes. We won't sit by and watch the terror in this world without the freedom to ask hard questions. But that doesn't mean that we need the answers. We more-so need our questions validated - simply by the fact that they are heard and that they are truly and deeply understood.

visited the Grand Canyon last week and I didn't care to figure it out. It could be hundreds-of-millions of years old or not. I don't really care. Either way, God was there then and He is here now.

We left our first meeting of Curiosity Club agreeing that our questions didn't say anything about belief or disbelief.  We decided they we're human and that God is a beautiful mystery and that the issues we raised make Jesus angry and confused too. What I hope I remember is that the questions don't have to shake everything I've ever known. It is more likely that I am simply trying to uncover what I thought I knew and believed all along. And that really, I'm not losing my faith in God himself, I'm simplifying my faith down into what God originally intended.

Good lord, I hope so.