Saturday, November 30, 2013

Stealing Stories and Making Memories

i. I've always had a thing for Saturdays. Staying in bed watching the sun creep into my room, taking naps in the middle of the day, creating and turning in with my journal and a good book and listening to One Direction while I cook lunch.
Before I took for granted how beautiful a day is when it comes to you without any expectations. And now, while my life is full of amazing, good things, I've been quite taken by these hours that seem to fold in on one another. I've started a little love affair with Saturdays, and I couldn't be happier.

ii. On my birthday, I had a moment of panic. A moment of wanting to just stay in bed and forget that this was what day it was. Where I could blissfully ignore the calendar. I was afraid because I didn't know how to be seventeen. I was another year older, another year farther away from everything that had happened during the past year, which felt like a good thing but also made me nostalgic. And throughout the day, I kept making these mental notes. What it felt like to sit at breakfast, surrounded by family. What it felt like to look at my relationships. What it felt like to get my nose pierced, what it felt like to drink a latte while wandering around the mall, what it felt like to buy the dress. And at night, when I emptied all of what I felt onto a page, I felt full. I was leaking over, bursting with all of what I couldn't hold.
Is this what it felt like to be seventeen?
I still don't know what it feels like. I think I'm a combination of every age I've ever been and every person I've ever loved and every place I've ever gone to. I don't think there is one way to feel a certain thing. And I'm excited to figure it out, to keep collecting memories until I'm full and then empty myself out, starting all over again.

iii. I've taken to stealing things. Bit and pieces of people's stories, taking tiny fragments of something they said or did or how they moved or what someone else said or did to them. I've taken to storing them all, stealing moments that belong to other people and creating something. I think I should wear a pin on my shirt, one that warns all oncoming people that I might just write about them someday. The way he looked at me in that one moment, or the way she walked down the hallway, or the way she closed the door and stood in the closet, taking a deep breath before walking away. And I'll never know what these moments mean to other people, but I do know what they mean to me, and that's why I write about them. That's why I turn them into a song or into poetry or into a scene in a story. That's why I doodle it on the side of my math homework or pull out my guitar or throw things around in the kitchen. Because I have to put it somewhere.
See, I collect these moments.
As much as I don't like talking to new people, I love eye contact. I love the thrill I get in my chest when my eyes lock with someone else. For a minute, it feels like a collision.
Yesterday I made eye contact with someone, and I found myself thinking about that brief second for the rest of the day. Something about the look in his eye moved me, and I couldn't put my finger on what it was.
I think that when you look someone in the eye, for a split second you're inside of their world and they're inside of you. It's this exchange, only for a second. It's one of the most powerful things I've ever felt, the honesty in people's eyes for that first second when you make that connection. Its enough for me to write pages and pages, filling up notebooks.
I wonder what people see in that brief second of honesty when they look in my eyes.
So I take the honesty I see in the world, the words other people say that make me feel something, and I close my eyes, putting myself in that moment. I put myself in a story that doesn't quite belong to me, and I make something out of it. I make it mine.
And I think that's why I feel so heavy sometimes, so full. Because I collect these moments, these brief glimpses of a universe that doesn't belong to me, and I hold them. And I remember them and I make them mine. And carrying around all those stories is hard sometimes, but its what I love.
I love that honesty, I love that eye contact, I love the vulnerability that happens without saying a word. That's the kind of language I speak on a daily basis. The language of stories, the language of the heart.

Sunday, November 24, 2013

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.

Sunday, November 17, 2013

The Closet (Living life well)

I sat this morning, cross legged on the floor, and listened to the story of a woman who has cancer.
Hearing her story, it felt like Vietnam and I was a vet. I knew that pain, I'd experienced the wondering when your life is going to end and if this disease is going to kill you and fighting to get better.
I'm in a different place now then I was a year ago. I'm back at school, I'm doing well, I'm stable, I have a life. And yet I'm still not better.
At school and in my now so called normal life very few people know about what I've been through. I don't talk about the medical side of things very much. Partly because I'm in a different place now than I was and partly because it's not relevant to where I am now and partly because for me it's a very personal thing. I'm doing well now but there's still that side of it that is still so raw and fresh.
I'm stable now and able to do so many things but there's not a day when I don't feel something and wonder if I'm getting sick again. There's not a day when I'm not scared that I'm going to lose everything I have right now. I'm walking the line between sick and better. I'm not sick anymore, not like I used to be, but I never will be better.
And this is my life now, finding a way to live and live fully with a chronic illness. Not letting the fear and the what if's rule my life.
Of course I'm still afraid. Of course it's still hard and overwhelming and exhausting and I break down because I don't want to live like this anymore.
I can feel the fatigue in my bones from the trying to be normal and balance my sick life and my normal life and trying to find what works best in terms of me feeling the best and how far I can push things without it getting awful.
I watched a TED talk recently by a woman who was talking about coming out of the closet. She said the closet was anything that was a hard conversation, something you kept hidden.
For me, that life I used to live, that's my closet. It's easier to not talk about it. Easier for me and probably easier for other people. It's easy to pretend that that's not who I am, that being sick isn't still this huge part of who I am. But it is. It has forever changed who I am.
So I think for me part of this new stage of life includes accepting that part of me while making room for the new part of me. I'm still that girl I was a year ago but I'm also someone new. My body is healing, my soul is healing, my heart is healing.
I had this thought that until I got the report that my conditions were cured, there would always be a part of me that was broken. I was living my life in fear of 'what if I get sick again' and I feel like I'm living this double life and it's exhausting. Until I was cured entirely, I believed that part of me was broken. Maybe I still feel like that some days.
But part of this journey is realizing that while I will never be cured, I am well. While I may never be healed, I am healing. Compared to where I was a year ago, I have made amazing progress.
That doesn't mean I'm not afraid. That doesn't mean it's not hard and I'm not exhausted. I still live my life by the clock. I still have to be very in tune with my body all the time. I'm still sick.
But I'm not broken.
I am struggling, but I am whole. I am cracking but it is only because I am growing.
I heard a quote this morning about things in life serving a purpose and then being done. And I feel like that part of my life where I was so sick, it served a purpose. And now I am moving on to this new chapter of my life. I am continually growing and changing. And just because I am shedding layers it doesn't mean I am no longer whole, it just means I am growing new skin, becoming a butterfly instead of a caterpillar.
One of the hardest things for me now has been balancing my 'two lives' and living fully with a chronic illness and not letting fear keep me in one spot. Sometimes I think it would be easier if I was back in that place where I was so sick because I knew what was coming. But that's now where I am right now.
I am here. I am healing. I am growing. I am changing. And while I'm not cured and still am sick and still struggling with that, I'm not broken. I'm not alone. And I'm trying to not fight the current and accept where I am now, surrender to the situation of where I am and not worry, not obsess over what could happen.
Sometimes I think I prefer to stay in my closet and not talk about these hard things because its easier, because it still hurts me to talk about where I was and where I'm headed when so many things are uncertain and while I'm not cured and still struggling every day. But once in a while I think it's necessary to fling open to the door to my closet and talk about where I'm at and where I'm struggling and how my healing journey is going. Because life is not isolation.
So this is my closet, the things I don't talk about. This is learning how to live again with a chronic illness, after you were convinced you were going to die. This is learning to embrace life and trying to live walking that line between sick and normal, between not cured but still well.
I think we all have closets, things we don't talk about. And maybe my closet has sparkly gold walls and maybe your closet has rainbow walls or purple walls or a disco ball, but we all have closets. And I think life wasn't meant to be lived in isolation.
I think part of healing is finding your tribe and finding those things that feed your soul and going with it. And I'm learning. And I'm struggling and I'm embracing and I'm growing and I'm healing and I'm well.

Sunday, November 10, 2013

Storage Space

I go through periods where all I can do is write. If I don't, the words settle in my stomach and make me ill. I write about Sunday mornings lying in bed, about boys who drive black cars, about the smell of the library after lunch and the sound of shoes on the hard floor and the way he watches me.
Other times, I feel barren and dried up. There are no words, nothing that comes effortlessly and flows. Every word takes thought, meticulously transferred from my mind to my tongue to my paper. I feel every nerve moving as I run the pen along the page, feel the work it takes to be the translator.
It is in these barren times I find myself collecting moments. Analyzing how it feels to lie in bed on a Sunday morning, studying the science of how things work and why, capturing the particles that wind themselves into old movie theater seats and the first snow fall.
I like the writing phases a lot more. I like having words, letting them pour effortlessly out from under my tongue. But I'm finding that being still has its beauty too.

I saw a trailer for a movie once where the girl pulled feathers out of her spine. Even though I've never seen the movie, for some reason that image is stuck in my mind. These past few days my skin has been peeling, I'm warmer than usual and there's scratching under my skin. It happens sometimes, part of a transition I suppose. And I can't help but check for feathers.
I feel hurricanes in the pockets of fluid between my bones and I feel tornados making ash out of my bones and I feel stars twinkling in my blood stream. Sometimes it feels like poetry and other times it just feels like a natural disaster lying dormant beneath my skin, a trauma waiting to happen.
People ask me if I'm ok and I am. It's just that I'm restless, tired of waiting for this transition to happen. I'm using my fingernails to claw back this layer of skin, revealing a newer, pinker layer underneath, fresh and ready to be worn away. I feel more fragile when this layer of skin has been worn through, done its job and ready to be replaced. When I'm in transition, I absorb everything like its life giving oxygen. I become very aware of the storm brewing inside of me.

My knees knock together. I unravel myself like a sweater. I am composed of moments and I feel as though I only have room to hold a few at a time. It almost feels like I'm a hoarder, pressing these moments into nooks and crannies inside my body where they don't belong but its simply because I'm all out of storage space. I peel back layers of flesh to make room for new skin, unworn, unscarred skin. My hands shake from pulling away the peeling layers.
Sometimes I feel like a car crash waiting to happen. I see the headlights before me, see the moon above me, and I brace for impact. When I hit, everything explodes and I think I'm raining stars.

Saturday, November 2, 2013


"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.