Last night was acoustic night at SheBrews. It was a chaotic mess of trying to run the coffee maker between songs, getting everything ready so the moment the music ended and the applause started we could flip on all the machines.
It was almost like a dance, but the kind full of awkward, clumsy movements. I spilled the milk and dumped the coffee beans, and this one drink was remade three times.
The routine movements that usually bring me some degree of comfort that night felt frustrating and foreign.
But the moment when one of my talented fellow students would pick up a guitar or step behind the piano everything fell silent.
It was like the whole room was just holding its breath for this beautiful creation to be birthed into existence.
...
I was reading last night over some old blog posts. The large latte I'd made in an effort to make myself feel better was keeping me awake, and my mind was running restless.
I was reading something I wrote nearly a year ago, and somehow those words I wrote then, in an entirely different phase of my life, spoke to the person I am now.
I imagined myself like those musicians. I don't curve my spine over a guitar, moving my fingers over strings. But I do hunch over my paper with a pen and write the world into order.
I know it hurts to become, to create, to birth this dream.
I feel the weight of it in my hands and they shake.
...
After the coffee shop had cleared, the drinks had been made, she told me to go sit. I felt a bit like a child entering into a room marked with a no entrance sign as I pulled up a chair and sat down beside the remaining musicians: the boy with the guitar and the girls who sang.
He began to play and they began to sing and I hesitantly added my voice to the song, my heart echoing every word.
I feel like I'm not allowed to say life is hard.
Because it is so good, so sweet, so beautiful.
But it's hard. And my heart is hurting for reasons I don't fully understand and my hands shake so violently I am frequently wrapping them around his to remain steady and I'm poking at the people I care about just to ask them to notice me here and it's the little things that set me off.
Life, in all its sweetness, carries a flavor of bitterness I desperately wish wasn't there.
As I sat before the music that night, letting it unfold before me, I felt a small bit like Mary sitting at the feet of Jesus.
I was here, sitting before that which was feeding my soul. Before friends and creativity and the sound of the guitar I was spread open.
...
I've been kind of a weakling recently.
My sweet friends keep telling me how strong I am, but I still have to squint to see it.
When I stand in front of the mirror my reflection is strange and uncomfortable because all this stretching, it's changed me.
I want romance and sunshine, laughter and a good night's sleep and an afternoon to spend cooking and dancing in the kitchen and writing.
Even more than that, I want Him.
I want Him to know I'm willing to be made weak.
I want this weakness, this delicate season of becoming, to bring me closer still to the God who calls me enough.
...
The song we sing, it's more of my heart's plea. In this crazy, unpredictable time when I'm not even sure if I can trust myself, I sing it and I feel every word.
I need you, oh I need you
Every hour I need you
My one defense, my righteousness
Oh God how I need you

Great is Thy Faithfulness

I woke up early, still exhausted after only a few hours of sleep, and got ready in the dark.
The sun had barely begun to peek through the trees when I stumbled to the 8 a.m. session on the first full day of Global Ministries conference.
This past week has been one of those weeks. Assignments are piling up, I am being brought to the wrestling ring time and time again, and I am constantly being asked to open up my room, my school, and my life to those visitors, missionaries and friends who are here for the conference this weekend.
And to be honest, I haven't been that welcoming, that kind.
I don't feel like being welcoming this week. I feel exhausted and stressed.
I've walked away from situations where I've been less than hospitable only to find myself immediately thinking of all the ways I could have been better, should have been better.
And all of it makes me feel like I'm failing.
My care group went on a mini missions trip this afternoon, and for the first little while when we were there all I could do was think how I didn't want to be here. I felt like I had nothing to give these people. They were just there, requiring more of my time and patience and kindness, and I had none left to give.
Looking back over this week, I see where I failed.
But I also see where He provided
This past week I was blessed with time where I was able to connect with a few good friends.
I was given small moments of rest
I received a verse, a lesson in class, a word from a friend at the times when it felt like I couldn't possibly give anything more that encouraged me to press on
His grace is sufficient
His strength is enough, even when mine is failing
And none of this is about me. All of it points back to Him
Like a friend reminded me, God is bigger than my failings, my shortcomings. He isn't hindered by the things I did or didn't do.
He gives me what I need for each day, no more and no less
I am reminded of the chorus of the song we sang on our missions trip today, the one I sang with the intent of offering it up to others only to be reminded that it is perhaps I who needed to be reminded of it the most
Great is Thy Faithfulness
Great is Thy Faithfulness
There is no shadow of turning with Thee
All I have needed Thy hand hath provided
Great is Thy Faithfulness, Lord unto me

In Five Years Time

It takes ten times as long to put yourself back together as it does to fall apart
I know what day it is...
Because at night I forget to sleep.
Every year, like clockwork, more than any other night of the year, on November twenty fourth I lie awake, tossing and turning.
Inside the cells of my body, somewhere, I imagine is the memory of it all. Folded up nice and neat like origami and pressed into the corner. And every year on this day, more than any other day, it is unraveled like strands of DNA that are pulled apart in order to separate.
It was five years ago today...
Even though the immediate danger is gone, the sting still lingers. Absentmindedly I reach for the scar on my neck, the one I relate with confusion.
Because five years later and I still don't understand.
I don't understand how things were fine, until they weren't.
I don't understand everything I went through in those days when I was fighting for my life.
And I don't understand why I'm still here.
...
My dreams are haunted now by the things I've seen, the things I've experienced. I remember very few days when I've awoken feeling like I actually slept, when I haven't been restless or awoken in the night paralyzed with the fear of something I can't remember, or something I can.
I guess that's true of every battle, that when you come out of it it's not without a price.
...
It's a one of a kind feeling to have someone you've never met stand on a stage in front of hundreds of people and say "This song is for a special girl," and then sing a song for you while all those hundreds of people cheer and scream your name.
It feels something like being a rock star.
Thanks to two very amazing bands, I got to know what that felt like.
It's an amazing feeling, one I'm sure I won't soon forget. One that wrapped around me like a blanket and whispered in my ear, "It's ok, now. You're ok. You're here, and this, all that you don't understand, it matters."
It's someone you've never met telling you "I'm in your corner. We're supporting you, every step of the way."
It's stitching the cuts in your soul with guitar strings and piano keys.
...
I don't think you can walk away from something like this unscathed. It changes you. Everything I've been through has changed me. The pain, the death, the unknown, the fear, the people you feel like you should have been able to save, the survivor's guilt, the smells and the sounds. It's changed me. all of it. It's made me stronger, yes, and more compassionate, but its also made it harder to sleep. It's made me freeze in hallways and duck into bathroom stalls to gain composure again because there was this one sound...
It changes the way you see the world, the way you see yourself and your life. It changes everything.
...
I'll tell them how I survive it. I'll tell them that on bad mornings, it feels impossible to take pleasure in anything because I'm afraid it could be taken away. That's when I make a list in my head of every act of goodness I've seen someone do. It's like a game. Repetitive. Even a little tedious. But there are much worse games to play.

Autumn

"Tell me it's all going to be ok," I said in an email. "You can lie if you have to, I just need to hear that it's all going to be ok."
"It's not," She told me, "It's going to be what it is. But you're going to be ok."

It was the last Wednesday in October and I was driving down the back roads at night, the radio playing so loud it drowned out my thoughts. As loud as it was, something about the whole thing felt still. Even though I was tucked safely behind the windshield of my car, it was like I could feel the wind coming through, going right through my sweater and the layers of my skin and blowing between each rib that makes up my ribcage, whipping away all the thoughts and fears and needs I had and leaving only stillness and serenity. And for a split second, it was all ok. Everything I needed was right here, for one minute. I felt full but for the first time in days that feeling of fullness didn't hurt. It felt like safety, security, solace.
I'm not sure if it's possible to find Holy Ground in the driver's seat of an old Jetta but if it is, I think I found it.

I have this friend who says things I think about saying but never do. And I told her this one day, sitting in a school assembly squished between her and another person. She told me that I should say it anyway, and who cares what people think.

I watched a spoken word once about apologizing for taking up space. It was late June and I decided to stop making apologizes for how I chose to live my life. "I'm sorry," I said rather defiantly, "But I'm not sorry."
I'm not sorry for saying I love you and meaning it.
I'm not sorry for loving too much.
I'm not sorry for believing in God and love and magic and the hidden power that comes in a box of hair dye and a tube of red lipstick.
I'm not sorry for not being the person you want me to be and I'm not sorry for needing you and I'm not sorry for not having it in me to be the person who can still look at you the same way and not be bitter and not be the person who has these moments where all I feel is the pain and it hurts so much I can't breathe and a scream gets trapped in my lungs where it turns to ash.

As I lay here, with all of these feelings pressing hard up against my bone, I remind myself of this. I remind myself that one day all of this will have burned down to ash that I will then scatter in the wind of the wide open space I've learned to call home and it won't hurt as much as the burning of it all.
And I remind myself that life will be what it is, but everything I need is right here, even if I don't see it yet, and that no matter what happens I will be ok.

Year One

If you would have told me a year ago that I would be here today, I wouldn't have believed you.
Because a year ago today my world was shaken and I found it just a little bit harder to breathe. I was just a little bit broken.
Because there's no hiding from the truth when it looms before you on a prescription pad, glaring evidence of everything that went wrong.
I fought to get here. I was broken and, at one time or another, during those very dark first few months, I thought my situation was hopeless. I got angry, I cried and screamed and lost it and some days I didn't want to get out of bed.
There was overwhelming guilt, and the frustration and agony that comes with not understanding what is going on inside of your own body and being responsible for your own downfall. Those first few months were agonizing. I spent days and weeks and months trying to define for myself what this new life would look like, because I didn't know how to live anymore. I had to find, and speak, my truth, and I had to learn how to be authentic in a world where everyone was telling me who to be and how to act and what I needed to do.
A year ago today I got the news that changed my life and my world caved in and I fell into the depths of it for a while. Some days I didn't want to live in the dark abyss my life had become.
5 long, trying, exhausting months later, in a church pew, I finally broke. I was buried in an avalanche of guilt and fear and exhaustion and sickness and pain and grief and I basically told God that if He wanted me to live, He better do something because I wasn't going to live like this.
And, obviously, not too long after that, my life began to change.
So I'm sitting here today, in a place I never thought I would be. I'm rising up from the ashes, like a phoenix.
And while some days are still unspeakably hard and my heart is still scarred, I made it through my first year.
On this anniversary day, I do think back to what could have been. It's hard not to think about what your life could have been like or should be like or...
But the what it's don't matter. All they do is make it impossible for me to heal.
So I'm looking back on the past year with gratitude, and maybe a bit of sadness for the girl who took so long to figure out that you get to choose what defines you, and that sometimes terrible things don't break you, but save you.

Brave

"It is not the strength of the body that counts but the strength of the spirit." J.R.R Tolkien

Hanging just above my bed, in a little emerald green bag, are 6 tiny beads. These beads are the first of my collection of bravery beads, 6 beads that represent the tests I had done on that Wednesday and all of the other procedures I've had that haven't been rewarded with a little colored bead.
I used to wonder about these beads. My friend and I were talking a while back and she commented on how she'd seen illnesses become like the Hunger Games, each person trying to out-do the other in terms of how sick they were. There's a ranking, and whether they want to admit it or not at some point almost everyone I know has compared themselves to that person over there or the one right there, figuring out where they fall in the ranking. I wondered if maybe looking at another's string of beads would be like this, another tool used to try and rank yourself and your illness.
This was until I got 6 little beads of my own. At first it was no big deal. I was excited to (finally) have some bravery beads to call my own. And then time passed and every so often I would look up at that little green bag holding my beads and smile.
The secret wasn't in the beads. It wasn't in how many beads I had compared to how many beads I've seen others have.
It was about acknowledging my own bravery.
It was about looking at those beads and knowing I earned every one of them. And it was about looking up at them when I didn't feel strong or brave and hearing the silent words "But you are."
The beads became a reminder for me that even when I don't feel brave, I am.
And I got to thinking. I think that there should be a bead for everything.
I got out of bed this morning, that was brave of me.
I stood up and dusted myself off after falling flat on my face and experiencing failure, that was pretty brave.
I made the choice to be open and honest. I remembered to take my meds. I chose to listen to my body and stay home instead of pushing it. All of those things are incredibly brave.
So why is it that so often instead of looking at those brave tasks and acknowledging them we focus on the negative? The pain endured, the task 'failed', the feeling that, even though it wasn't acted upon, was still there, the negative comment someone said or that was perceived.
I think maybe we all need some beads. To remind us of the good things, the positive things, the incredibly brave things we do.
I don't feel brave. Some days I'm struggling just to hold on. Sometimes it's not about earning a bead or a purple heart, it's just about going where you're needed and doing what needs to be done.
Looking up at my tiny green bag of beads, I smile, knowing that even when I don't feel very brave these beads prove me wrong. They remind me who I am when I forget it.
I am loved.
I am enough.
I am brave.

Sea shells and The Girl On Fire

Maybe you don't have to be ok every minute of every day
In my exhausted state, I was trying to be profound tonight.
I was reminded by a friend of something I have said before which is "There is beauty in the breaking."
I told her from the middle of a breakdown it doesn't look so beautiful and she said maybe I just need to blink a few times.
I told her I thought that was profound, I just wasn't sure how yet. And then I started writing and this is what I came up with.
"It will get worse before it gets better but I promise you it will get better."
I'm waiting for the better.
I'm waiting for the day when I can say "My cousin is dead" and it doesn't hit me like a ton of bricks
I'm waiting for the day when I can look at the people who love me and not want to push them away
I'm waiting for the moments that I can savor, when I can look around and think "If this isn't happy, I don't know what is." I have a collection of these moments. I'm waiting for the day when I can find more to collect, like finding a pile of sea shells someone left on the sand.
I was watching this movie the other night and one of the main characters said this quote I wish I could remember exactly but it was something along the lines of "You are have such a cynical outlook on life for such a privileged person." And I don't know why but it was something about that quote that made me stop for a minute. Because it's right.
I was talking to a friend a while ago and I said that, while being burned, I'd rather be known as the girl on fire than the girl who burned in the blaze. And what I meant was that I wanted people to see beauty in the breakdown. I don't want to just burn slowly, I want to be on fire.
And on Monday of this week, I was sitting in the backyard, being loud and crazy and cartwheeling across the wet grass and pretending I was talking to someone and I was talking about what it meant to be alive. I said in this moment I feel alive. I feel like my soul is alive. But in those bad moments, I'm alive in those too. Those dark moments, they remind me I am alive. Even if what I am feeling is painful and heartbreaking, I am feeling something. I do not cease to exist because things are hard. I never stopped being alive.
And in writing all this, it made me wonder if perhaps my friend is right. So things are hard, and I feel broken. But never once have I stopped being alive. And even though I'm burning maybe it doesn't mean I'm turning to ash but I'm becoming the girl on fire, stronger for it. Maybe the only way through is to feel every heartbreaking, agonizing minute of it. No one gets to go through life without pain. and so I get more than my fair share. Even in the pain, I never stopped being alive. Even though I can look at myself and think how everything is a disaster, maybe it's a beautiful disaster. Maybe instead of burning alive, I'm the girl on fire.
I believe there is more than what my eyes are seeing.
And yes, despite going through a time where all I can seem to feel are the heartbreaking, agonizing moments of everything, I do believe still that there is beauty in the breaking.
I believe things will get better. Maybe they have to get worse before they get better but they will get better.
I believe that sometimes you can't wait for someone to save you, sometimes you have to save yourself. In the end you have to want to change, you have to want to be saved, you have to want to live. In the end there's no one else, only you and the sound of your heart. And you'll have to learn to listen to what it is saying.
And the sound of my heart? It's saying "Keep going. I promise you things will get better. And while you're waiting for the tides to change, keep looking for sea shells."
And so I will. I'll look for sea shells in this storm. And instead of burning I'll become the girl on fire.

Numbers and Stories

The story doesn't end here

It's been 128 days since I got diagnosed. I thought of just saying how long it's been in months (4 months and 6 days) or guessing (just over 4 months) but I've decided I've earned every single one of those 128 days. I'm still 128 days later, and sitting there on September 11, 2012, I didn't know if I would be. I couldn't imagine myself 128 days out, or even 18 days out.
Life stopped for a while, for me. It stopped and now that it's slowly beginning to start again I'm left to look around and wonder what happened during those days. If I'm being honest, I'm looking over the past 1513 days (November 25, 2008) and wondering what happened.
Last night I kept asking myself the question, "What are you scared of?" over and over again. I came up with some pretty interesting things, but one of the things that struck me was this, "I'm scared I haven't made any good choices since November 23, 2008. I'm scared I did it all wrong and I ruined everything."
I keep track of days. Days since the diagnosis, days since the coma, days until finals, until the new semester begins, until break, until the weekend, until doctors appointments. I keep track of numbers: my locker combination, numbers that fit seamlessly into physics equations, the number of books I'll be reading for english next semester, the numbers on the clock that tell me how much time i have left before i have to get up or make an effort at doing some school or walk to class or babysit.
128 days. 1513 days. and I've earned every single one of them.
I never imagined it making it here, to 128 days - and 1513 days - out. If you'd ask me in September if i ever would have made it here I wouldn't know. I couldn't imagine myself here, couldn't imagine making it this far. If you would have told me after I woke up from the coma that I would be here now, that I would have fought like crazy to get diagnosed and then that that diagnosis would have almost broke me, I wouldn't have believed you.
The days fall together in a blur, and I wonder about everything I did during those 1513 days.
But the story doesn't end here. The story doesn't end at 1513 days or 128 days.
Everything is lying blank before me, and just because one chapter is closing doesn't mean the story is finished. The story doesn't end here. There will be new choices - better ones, hopefully - and new chances at love and relationships. There will be good days, and bad days, days that I walk through with ease and days that I fight through every single moment. And each day I will have earned another number, another day that I'm still here, still living, still writing the story that is my life. Because my story doesn't end here, and neither do the days of being a survivor.
It's been 1513 days, and 128 days, and I'm still here. I'm still fighting, and I have earned every single one of those days. And the story doesn't end here. Because there are still so many days waiting to be filled with heartbreaking things and wonderful things that I can't even imagine yet.
The story doesn't end here. With each day that passes I am walking farther away from the battlefield I lived in for so long, and walking towards the sunrise, with the promise of a new adventure lurking on the horizon.

In the Middle of it

When I read the words in the picture, something struck me and I've been sitting here for the past 10 minutes trying to figure out how to put that in to words.

In the chronically ill circles, strength is something to be admired. On a consistant basis the words, "You're so strong!" are heard from a number of different types of people. The answer that usually comes is, "Really, I'm not."
Because I'm not. I'm not that strong, I'm not that brave, I'm not that courageous.
Also, strength is a kind of a label. You become the strong one, and with that label comes the feeling like you aren't allowed to fall apart or be emotional. My life is about what is needed from me. It's about holding things together. This is my job, that's what I do. I do what needs to be done. And maybe that does make me strong and brave but it's just my job, it's what I have to deal with because I don't have another choice.

The words "Where your strengths are irrelevant" really struck me. My strength has nothing to do with how I get through the day, or how I put up with everything I do. When people tell me I'm so strong and I tell them I'm not, besides just saying that I'm just doing what needs to be done, it's kind of my way of saying my strength is irrelevant here. My strength has nothing to do with how i get through every day.
On those days when I don't want to be strong anymore, or when I quit, it's not my strength that gets me through those days. There are so many days when my strength is gone and I can't take this anymore, and it's His strength that gets me through those days.

It is in this valley of the shadow of death called chronic illness that my weaknesses are evident. I can't hold the world together, I can't hold my life together, I can't control the reactions and emotions of people around me in regards to their response to my situation. When the Glycosade Trial didn't work it was my fault, it was my body that couldn't get it right and accept the drug. (I know this isn't true but that's how I felt.) Every time my body refuses to adadpt to a new treatment, or every time they can't get an IV in or every time I am in so much pain I can barely breathe my weaknesses are glaringly evident.

But it is in these hard times I have learned to trust. I was thinking the other day maybe that's why the loss of health due to another diagnosis is so hard to deal with, because you have to learn to grieve in the storm. There's no when this is over, you deal with it in the middle of the storm. You learn to trust God in the middle of the storm. And that's pretty crazy, and really hard sometimes. There are so many times when I've wanted to say, "Ok, God! Just give me a break here and I'll trust you. Just let me catch my breath and stop for a minute and get my relationship with You back on track and we can keep going." But there is no stopping in the valley of the shadow of death; I must keep on walking.
And it is in the middle of the storm where i have found some of the most beautiful things. It is during these storms God has drawn me closer to Him.
Sometimes I take my eyes off Him and look at the winds and the waves surrounding me. They are big, and scary, and it's easy to become lost in the storm. I begin to sink, my strength not enough to sustain me and keep me from drowning.
"How many times will I have to scoop you up before you just learn to follow me?"

Here my weaknesses are evident. My strength is irrelveant.

Eyes on me, I've got you, I'm not going to let you drown.

Because when my strength isn't enough, His is always enough.