Sunday, August 31, 2014

this is the part where life keeps moving and so must i

Things have come to an inevitable end.
I was planning on writing today about how this is the last night. It's the last night in this house, in this bed, with these people. At least for a little while. And in a way that seems sad.
I remember when we would always move houses when I was growing up, and during one move about three houses ago I sat in my room and wrote about how the walls were becoming too small for me. They had already held my secrets, my tears, my joy. I had already existed so fully in this space. And now I had to move. I had to move forward because somewhere out there was a new space big enough to hold the person I was now, and because someone else somewhere needed to be in this space to further their evolution.
A few months ago, I was watching an interview with some teacher who said that the more resistance we encounter, the more important the event is for our soul's journey. And at the time, I thought it was fitting as on this journey, the one in which I transition from high school to college, from being a kid to being an adult, I've encountered a lot of resistance.
It often feels like running into a brick wall, and I wonder if there isn't a reason why I should turn back. I think that's the way it is, though. Staying always feels safer than going.
But I think moving needs to happen. It needs to happen to keep things from sticking and settling and to keep things shaken up and so you keep growing and evolving and changing and learning.
Just as much as I needed to take those first steps into first grade, I need to take these first steps.
And yeah, it's going to be scary. Those trembling first steps of something new demand that the person taking them be a little scared.
Just like dorm rooms demand to be lived in and some relationships demand an expiry date and the Universe demands to be noticed.
And I think everyone is scared to some degree because creating your own life is scary and moving into new spaces is scary and being someone who actually matters and does things in the world is scary.
Being a person is scary. Which lends itself to the idea that everyone is scared.
Everyone is terrified of something. Life has a crazy way of shaking things up and demanding to be noticed and acknowledged and experienced and felt.
And if everyone is terrified of something, it means that not one person is alone.
I am not the only one standing on this platform between what was and what is, holding up this beautiful thing I created which is my life and myself and letting the world make of it what it will. I am not the first, nor will I be the last.
And if life demands to be noticed and experienced and new spaces demand to be moved into, then it means that every ending is also a new beginning.
Or maybe there isn't a distinct line between endings and beginnings, just a bunch of lines blurring together until they make a life. Where one thing ends another seamlessly picks up its place, even if that thing is not totally recognizable to the human eye.
Maybe there is no answer on how to do this. You do it as loudly or quietly or spiritually or mentally or fast as you can but in the end you do it the best way you know how and I think we as people need to learn to look at the other people around us and see that they are doing the best they can too.
And nobody has any of the answers. And everyone is terrified.
But the fear doesn't mean we should stop experiencing life or love or moving into new spaces. Fear and resistance just means this is a big deal and its important and it matters so pay attention.
Fear and pain demand to be noticed in the same way that life demands to be experienced and great love demands to be a little crazy and great happiness demands great risk.
If every ending demands a new beginning, however soft and small, then this will be the beginning of something wonderful.
And despite all the reasons to turn back there are more reasons to keep going. Because everyone is scared and maybe this part demands a little bit of fear and the fear demands to be felt.
And it is only by feeling this that I will continue to grow, and evolve and create and live.

Thursday, August 28, 2014

The Cornstarch Challenge

This week is Glycogen Storage Disease awareness week.
Glycogen Storage Disease is a condition where you are missing the enzyme needed to turn glycogen into glucose. It is rare, invisible and as of right now there is no cure.
I am one of the people affected by Glycogen Storage Disease.
Living with GSD means my body can store glucose as glycogen in my body, but can't retrieve it. When I am without glucose, my blood sugars will drop which can result in a seizure, coma or even death. To maintain my blood sugar levels throughout the day, I have to eat every few hours, and must drink a mixture of cornstarch and water. It sounds crazy, but cornstarch is a slow releasing starch, making it possible for my blood sugars to stay stable.
Having GSD means I live my life by the clock. I'm always having to check in with myself, make sure my blood sugars are stable, and have access to food and my cornstarch.
I'm occasionally late, have to leave events early, and I tend to leave a little trail of white powder on counters and the front of my shirt.
It's not a glamorous life, but it's my life.
Something I want to bring awareness to this week is called the Cornstarch Challenge.
You've probably heard of the ALS ice bucket challenge, and this is similar.
The challenge is simple: make a video of yourself drinking two tablespoons cornstarch in water. That's it! It's such a small thing to do, and it gives people the chance to see what I do on a daily basis.
When I linked up the challenge on my facebook wall, I nominated a few family members but wasn't anticipating huge results. The ice bucket challenge is still continuing to be a huge thing, and I didn't think there was room for another challenge for people to care about, participate in and donate to. I kept my hopes small, as to not be disappointed.
To say the results have greatly exceeded my expectations would be an understatement.
Currently there are people from all over the world participating in the challenge. Many family and friends of mine have shared the message, have taken the challenge themselves and have donated to try and help find a cure.
There are people I haven't even met but who are somehow connected to me that are participating in this challenge, and showing their support for me and for all the others out there with this disease.
I am amazed by the outpouring of love and support.
While this challenge is about raising awareness and finding a cure for GSD, it's more then that for me.
It's about seeing friends and family stand by me. Having an illness is lonely, and you often feel like you are walking this journey in isolation. I have often felt like I'm living in a whole different world. No one quite understands the daily struggles of a patient with GSD and his/her family. Things are the same in so many ways and yet they are so different.
This challenge, for me, is about seeing everyone who has raised their glasses and chosen to stand with me in my fight. I am brought to tears by the number of people who have stepped in and said "You are not alone."
I was told by my aunt not long before I sent out the link to the cornstarch challenge that one person can make a difference. And while my passion is bringing awareness to GSD and other illnesses like it, and letting others know they are not alone, I didn't set out wanting to change the world. What I found out during the few days since I've sent out the link was that yes, one person can make a difference, but also that when we stand together amazing things happen.
Light can break through darkness. Hope can penetrate despair.
I want to personally say a huge thank you to everyone who has participated in this challenge. Your support means the world to me, and I cannot express how grateful I am. You all make me feel like the luckiest girl in the world. Because of you, I have the strength to keep fighting.
And I would also like to encourage anyone out there who hasn't yet done the challenge to do so. I nominate you! If you can donate to help find a cure, great, and if not just seeing your videos and knowing I have your support means so much to me.
I've included some information about GSD and the Cornstarch Challenge, if anyone wants some more information.
I believe that when we stand together, we can make a difference. Who's with me?

Sunday, August 24, 2014

In which I get real (and rant about Christianity in America, the church and my own brokenness)


I’ve always had issues with the church, some of which I’ve discussed publically before. There are crazy statistics about the number of youth that leave the church, and to be honest I always thought I would be one of them. It’s not that I don’t love Jesus, but the idea of organized church services never seemed to fit me. I didn’t understand in a real way what the church was supposed to look like, and despite growing up in it I had all these misconceived notions about what the church was.

I was terrified about being judged for my mistakes by the Christians who sat in church every Sunday. I grew up with this image in my head of having to get ready for church. You got dressed up, put on your I’m a Christian and I’ve got it all together face and you went to church.

My view of church has changed in the past year or so, thanks to some wonderful people who pushed me to be real. But I still tend to see the flaws in the church. I see that we’re a body of people gathering together trying to follow God but I also see so clearly the fact that we are a bunch of broken people.

 I think the church would be so much better if people lived this way. If, on Sunday morning or whenever, people got together and said, “You know, this week I’m really struggling with this…” or “This is one of the worst things I ever did and God is still working through me on this.”

I know I’m not totally innocent. I am still a part of the problem. While there are many issues I’ve been open on with my close group of friends or those I’m involved with in different areas inside the church, its so much easier to put on that paper doll face and pretend everything’s fine. It saves me from being confronted with things I don’t want to face, or bringing up things that would be painful for me to deal with.

I rarely write on my blog about my faith directly, not because it’s not important but because it exists separately from my art.  Often what I believe influences what I write about, but what I write about is not limited to my faith and what I believe. I also find it hard to try and capture the essence of what I believe or face big issues in my writing without taking away from the issue and the importance of it, so I often tend to stay away from writing about the topic directly all together. It’s one of the big problems I have in Christian music, or any form of art. The idea of God and his grace and love and power is so big and mighty that when it’s confined to a catchy pop song and made to be entertaining, I often find it’s taking away from the bigger picture.

 This morning in church one of the things that was brought to my attention was the idea of being real. Yes, it’s one of my big issues within the church, but aren’t I part of the problem? I do try to be real and talk about my struggles within the areas of the church I am involved in, but I need to have that constant desire to stay real, and not retreat into myself when life gets hard.

Lately I’ve been struggling with the idea of not being enough. I often feel like I’ve exhausted grace. I am so aware of my faults and shortcomings. Things I’ve dealt with in the past keep coming up, and while it’s been amazing dealing with all of this and experiencing radical grace, it often leaves me feeling undeserving. I’ve been struggling in different areas of my life, and while I’m trying to get better it feels like I keep falling on my face. There are often times I doubt what I’m doing, or the strength of my faith. And while I want to not struggle and not doubt and be confident all the time, I know I probably will never be that person. I will always be the person who is wrestling with my faith and what I believe and the big issues. Odds are I will walk away, and come back, more times than I can count.

 I’m scared about the future, and the big steps that are going to be happening over the next few weeks. And while I know it’s what I’m being called to do, it doesn’t take away from the fact that it will be hard work. It’s not something I’m excited to do. It’s not exciting to shown truth and faults, but the amazing grace that I know is coming, and the grace I have already experienced in such a huge way has been amazing, and exciting.

There is a lot I don’t understand. I am an absolute mess, and if anyone is the least deserving of God’s grace I’m probably at the top of the list. Today it was mentioned in church that if you’re looking for the worst sinner, I’m it. We’re all it. And I definitely feel that. I feel so flawed, and so imperfect and undeserving. I feel like I can never get it right and that the weight of the mistakes I’ve made sit on my shoulders ready to crush me.

 I feel weak, and small. I feel like nothing compared to the giant that is my past and my mistakes that is staring me down. And I struggle with accepting grace.

 I’ve always tried not to be that cliché Christian who finishes a long rant with “But by the grace of God…” but I don’t think there’s any other way. Because I am an absolute mess. I am a dirty, broken sinner who has made so many mistakes and bad choices. I am the worst of the worst. I am weak and small and nothing, and I absolutely feel it. I’m a bad Christian, if there is ever such a thing.

 The only thing that I have going for me is that I have a great Savior. I won’t even try to fully understand it, because I know I will never understand how someone could look at me and everything I’ve done and still call it worth loving. Some days I can’t even accept this because I feel so shameful and guilty. But I have encountered grace in a real way, and while I doubt it at times I know I can never escape this radical grace that has been offered to me. I don’t deserve it, I wish I didn’t need it, but I do.

 I’m just one person, but frankly I think the church and Christianity would be a lot better off if more people were more real. Maybe they are and I just haven’t met them. To all the people who have modeled this in my life, I thank you.

 There is a lot I don’t understand about Christianity and God, and a lot I have to and am currently wrestling through. But none of it matters. What matters is this: I am an undeserving, broken, sinful, awful person who has been saved by grace. For some reasons which I won’t pretend to understand, I am loved by a great Savior.

 And despite the feelings of inadequacy and failure, in this moment all I can be is grateful.

Saturday, August 23, 2014

Dear August

Dear August,
A few months ago a writer friend of mine spoke words I found to be more true than most. He said that over the past little while, his writing and creating had turned from a more personal state to pleasing an audience. He said while he planned to continue writing, he would not be sharing on such a public platform. And while I was sad to see him go, at least for a little while, from an artistic standpoint I understood.
You've been this way to me. My journal is filled with musings, words written in delicate penciled letters. It is in these pages that my heart has been cracked open and all the messy insides have been revealed. I wrote some of the truest sentences I know, pondered life's big questions and sat face to face with the self defeating critic who is also myself.
We bonded over lazy days and stormy nights. We spent countless hours pouring back over the past, and trying to make sense of this thing called the future.
I tried to make amends where possible, tried to sort through the pieces of myself I'd thrown away if only trying to create a bigger, more full picture of the present.
A few years ago I wrote a poem (though I was not in the business of calling what I was writing poetry) about how certain months were meant for living.
August, to me you were this way. You were full of firsts, beginnings and endings tangled together so tightly I could barely tell which one was which and sometimes I think it was both in the same moment. You were the truth coming to me softly, wearing disguises but always the same. You were full of hope so carefully hidden that in some moments I had to blink twice to see that it was still there.
You brought to me a gift, sometimes unexpected. You were personal, revealing layers of myself I didn't know how to process much less turn into art.
And so I stopped writing regularly in this little place. I began writing for myself, on a much more personal level.
I stand by what I said, how some months are meant for living. This month was meant to be bursting and alive, unable to be captured on paper. It is full of tiny treasures I tucked close to my heart and pondered.
Dear August.
Thank you. Thank you for so tenderly holding my little discoveries, and for being gentle with me. Thank you for being my safe place, my refuge, and for preparing me for what is ahead. I feel ready now.
I wish I could hold on to these last few fleeting days forever, but if you've taught me anything it's that we must boldly march forward into the life that is waiting for us, whatever that may bring. There is always more: more goodbyes but also more hellos, more endings but eventually just as many new beginnings. There is always more hope, more peace, more truth, more discovery, more love.
The past few weeks have been a gift, wild and unexplainable.
Dear August, you've always been one of my favorites (don't tell the others.)
The journey lies before me, stretched out and waiting. It is in you I have learned the vibrant enoughness of my own being
Thank you

~ A