"Soon this place will be too small"

Writers scribbling in the midst of grief have noted the ways in which writing about the experience from the inside creates something new, namely, a safe or safe-ish place to rest. A net, a landing point, a dock from which to view the turbulent and troubled waters without having to wade in it every moment of the day. In a word: relief. The act of creation forces the creator to establish a new world with new rules and structure and form, an act that is sustaining not only in an emotion and a human way, but also in an artistic way."
From Still Point of the Turning World by Emily Rapp


For as many times as I've done it, you would think that letting go is something that comes easy to me. And yet I still find myself fighting against it, my heart suffering from whiplash and weathered by the elements.
There is something they don't tell you about the moment when you alter your position to the universe.
My hands and feet are cold, I am filled with reckless ambition, I have avoided mirrors and sharp corners and acidic foods simply because this is what you do when you have been stripped down to a new layer of skin.
Sometimes I think it would be easier if I could plot my relation to the universe with a simple formula, putting things into neat little boxes.
I am angry because...
I am sad because...
But sometimes there is no explanation, only still silence. It is in that silence I can hear my own heartbeat like a machine gun as it slams into my chest wall.

Don't write if you don't feel up to it, people cautioned me when I told them I had started to write {about Ronan}. But it didn't matter if I felt up to it. It was my responsibility; it was my job. It ordered chaos, focused energy, provided a way of "bearing up" that no period of restfulness could possibly accomplish. In other words, rendering loss was a way of honoring life

I have spent months writing about grief, running it over in my hands, preserving it in every way that I can. I have spent days chasing after life, wondering what exactly constitutes life, and love, and always altering my position to both.
I have said the words I love you many times, and most of them meant Please don't leave me here alone
I write in my own blood, until my heart is exposed on the page. Sometimes I wonder if this also constitutes as art. I wonder if there is something beautiful in being so exposed and fragile.
I have been digging through my own ashes, pulling the gore from my chest with my bare hands, staring at myself and realizing that my horror and my wonder are colliding in this very moment in a place under my skin, that I am both.

After a second suicide attempt, Mary awakens on the bank of the Thames, having just been rescued from the water. This event marks a kind of rebirth for her, an awakening.
'We must go on living' Mary concluded, 'It is our duty'

And so, in the darkness, I am working to build a life for myself. I am capturing moments of beauty, storing them, treasuring them. I often feel like I am laboring long hours, and in the end I can only hope the outcome has been worth the heartache.
There is great heartache that comes with letting yourself be loved, I have decided. I am continually altering my place in the universe, constantly shifting, expanding and shrinking, pulling in and releasing with open hands.
There is nothing left inside of me to offer right now. My hands are empty, my body turning in on itself, my eyes always looking for glimmers of hope.
Somehow, as hard as I have tried to hold onto the past, this feels like starting over.
As much as I have made myself believe I must hold onto the pain and grief, never forget the extremes it has taken to become this person, right now it feels like I am awakening into spring, a new beginning.
There comes a time when you must taste hope for what is really is, and open your heart once more to the potential.
I have held things (people, pain, stories, grief, moments) close to my heart claiming that I would never let go of these that have impacted me so greatly
But sometimes it is time to let go
And you must stand in the wind with your arms raised to the heavens and trust that this is how it is, how it is supposed to be

I stared at him and tickled him and kissed him and wished that my words, anything, could save him. But no, writing would not save Ronan. But, I thought, it might save me

16

I am 16 *
I am what I am
Don't you make me to be
Anything less than the true heart of me
If sixteen is a number
Then what could it mean?
Does it limit my thoughts, my passions, my dreams?
Take me out of your box
I have no place there
I'm too wild for that
It wouldn't be fair
If you say that you know me,
Then look inside me
And ask me the questions you think I'll hide
I'm perfectly willing to open your eyes
Are you too scared to look into mine?
I'm more than a song you've forgotten how to play
I'm more than the words you can't seem to say
If sixteen is a number
Then why do you care?
Does it change who I am
Or all that I've shared?
Don't you tell me the things you want me to be
Who are you to say what you think you should see
If I am what I am
then sixteen is my age
But it's not a number that defines me today


I've spent the morning listening to birthday songs. In the secret society of the sick, birthdays are a big deal. It's another year of life! And I've made it to 16!
Here's some of the birthday songs I've been listening to this morning... a little birthday treat for you

* Adapted from Wake Up Generation by Paige Omartian

Quotes and an Awareness Video

Day 2: Find a Quote and Use it as Inspiration

I've been excited for this post, and also anxious. I love quotes, but really, how do I pick just one?
There are a lot of different quotes that mean a lot of different things to me. There are a lot of quotes, too, I'm finding i don't know how to explain what they mean to me. So instead of just writing a post about one quote, I thought I'd share a few of my favorites - the ones that mean a lot to me right now.

Be Brave Enough to Break Your Own Heart

The Secret Places of My Heart are often visited by Strangers

I am a wild thing. My Nest is gone. My Sanctuary is ripped out of order.

We grow attatched to our scars. I was attached to them. Maybe I still am.

She never belonged to me, but I always belonged to her.
(This is one of those ones that doesn't make a lot of sense. When I think of it, I think of it in reference to being undiagnosed. It never belonged to me, it was never mine. And yet, I always belonged to it. make sense? Or is it just in my head that that makes sense?)

It was a strange tingling that made her think of Phantom Limb Syndrome, but this tingling was rooted much deeper. She felt like parts of her soul were missing, had left her body long ago. It happened not 3 months ago in Greece, but long before that. It was in Greece she realized these parts had left her and were not coming back.
(I know I shared this one before, but I think it really does capture a lot of how I feel. I have been asked, "Oh, well you knew it was coming, so it can't be that bad, right?" And I want to tell them the same thing, nothing left me on September 10. I knew the diagnosis was coming. It was just on September 10 I realized what was missing, and that it was never coming back)


I also saw this video, today, and wanted to share.

Maybe it will help you understand just a little bit more about what life with Dysautonomia is like...

It was a strange tingling that made her think of Phantom Limb Syndrome, but this tingling rested much deeper. She felt like parts of her soul were missing, had left her body long ago. It happened not 3 months ago in Greece but long before that. It was in Greece she realized those parts had left her and were not coming back.

 

Resilient

I was writing a letter today to a friend of mine. It was just silly notes, scribblings in an old notebook, but I came across a very interesting surprise.
My friend is amazing. Only after having one conversation, I knew we were going to be close. And we are. We're kindred spirits. My friend has gone through a lot. Our stories are so wierdly similar it's crazy.
I was writing this letter, and I was writing it for both of us. I wrote that people like us, we've been handed everything. Every little blow, it seems to happen to people like us. You know the kind of people I'm talking about? The ones that seem like, when you hear their story you wonder, "How the heck did they survive ALL that?"
Yeah, there's a special club for people like us, and you're not in it 'till you're in it. You can try to understand, and sympathize, but until you feel that loss...
I was thinking, about her, and about me, and I was thinking we've lost a lot. And then, I came to this realization: "We've had the worst crap happen to us. But we overcame it, and we continue to overcome it. We're resilient."
It took me a minute to realize that I was talking about myself too. My friend, yeah, she's resilient. But me... well it's harder to see that.

re·sil·ient

adj.

1. Marked by the ability to recover readily, as from misfortune.

2. Capable of returning to an original shape or position, as after having been compressed

 

I paused for a moment. My letter stopped there. Resilient. The word resounded in my head like an echoing chorus.

I want to ask the question, "Really, me? Me, who can't seem to get it right, and who feels like she's failing at a lot, and who is unsure about where the future is taking her and feels so incredibly messed up? You sure you're talking about that girl?"

And then the silent whisper answers back - the whisper that is both myself and not me- saying, yes.

Yes you, because you got out of bed this morning. Yes you, because you are still here, still breathing, still hoping, still encouraging, still loving.

You, you are resilient too. You are still here, still feeling and breathing and being alive. You, and me, we're resilient.

 

 "You can get over a bad childhood. You can have the worst crap in the world happen to you. You can get over it. All you gotta do is survive"

Wordless Wednesday... and then some

Sometimes I just want to live in France or Italy or New Zealand and make pictures and eat good food and write poems and sing outside loudly even thought people might stare. Sometimes I want to remember that moment between then and now when everything was okay and I knew deeper than the earth that everything was going to be all right. sometimes I just wish life were simpler and the days were shorter or longer (I can’t decide) and things would be alright. Sometimes all I want is to feel the ocean under my feet and the sky above my head and have the only sound be the wind whistling across the plains and over the trees like a symphony I wish I could understand. sometimes I wonder about what I’m supposed to do and who I’m supposed to be until I remember that I’m just Alisha and I love the here and now of today.

Right Where I'm At

I read a blog post where this thing was mentioned called Right Where I am. It's about where I am today, not where I was, not where I'll be tomorrow, but where I am right here in this moment. Of course my fellow blogger added a date on hers - the days that have passed since she lost her sweet daughter.
I was going to write a date on mine, but I can't remember how long I've been undiagnosed (something like 2 and a half years.) and I haven't gotten a diagnosis yet so I can't count the days that have passed since I got my diagnosis. So I'm not going to have a date, I'm just going to write where I am.

Right now I'm somewhere in the middle of the stages of grief.
I'm somewhere in this storm of grief. I'm grieving the loss of the girl I was, and trying to adjust to this new life - to this new kind of normal. I'm not quite sure which stage I'm at, maybe anger, maybe depression, maybe somewhere between the two. Not acceptance, which was where I thought I was a month ago. Whenever I thought I'd dealt with everything and was moving on, another piece emerged, like bits of wood floating up to the surface that only hint at the shipwreck below.
I got bloodwork today, and the rain seemed like a good soundtrack to my day. It wasn't sad, but hopeful. It was calming and peaceful.
As the mist washed over the farm land, I remember thinking there was something so magical and precious wrapped up in that moment.
When I was a kid I thought that rain was God crying. On a particular drive home from a family vacation, as we drove through a thunderstorm, I remember me and my cousins making up all these things, like rain was God spilling his waterbottle and thunder was God playing the drums and lightning was God taking a picture and we would always try to smile out the window right when the lightning hit. And I remember the summer when I was 12, releasing my wish balloon in the pouring rain and my dad saying that, in literature, rain was a sign of renewal.
Today, I think the rain meant a lot of things for me. This morning, on the drive to the hospital, I think it was a sign of hope. And this afternoon, with a heavy heart, I like to think like I did when I was a little girl, that rain was God crying and that he understood my heartache on this day. I like thinking like that, like God knows how hard this is, and He understands when everyone around me doesn't, and He's crying along with me.
I'm also reading this book, Where You'll find Me by Jenny B Jones, and I can't say exactly why I relate to Finley, the main character, but I do.
Today, I got an email from a very special friend, encouraging me. I complained to her (I'm getting tired of complaining!) and she graciously helped me think through everything. I am so blessed to have this wonderful woman in my life.

So that's where I'm at right now ~ 2 and a half (?) years being undiagnosed. And I know no amount of editing this post will make it perfect, and I know if I read over it I'll probably delete it.
Where I'm at: Finding my way, grieving into God's strong arms but still trusting, Still hurting and angry and confused and exhausted. I'm not at my best, and I'm trying to be hopeful. It's not a big success some days. I am also so thankful I have a God who is willing to meet me right where I'm at. And I believe someday I'm going to make it through this, and I'll come out on the other side very different then when I entered but also the very person I'm supposed to be.

"Sometimes when we were stuck, we'd stop for a minute to rest, regain our strength and let the waves take us for awhile even when we weren't going anywhere, it was still sailing"

Jaxon's quote's of the day

Here's Jaxon's quotes of the day, enjoy!

"Am I more then 90 minutes old? More then 100 minutes?"

"There's this thing, called Slap, and you go there, and you can unfriend people. one click for want to unfriend them, and two clicks for really want to unfriend them."

Looking at a picture of Jeff Probst "That looks like the grade 8 teacher from our school!"

"You will not unslap me!"

"I guess you can't unslap me, I'm too cool to be unslapped!"

"Do I have a heart?"

The little things...

It's the little things. Sometimes it's in the little things when you find hope, when you find the courage just to make it through the day. It's finding a blog post that I can relate to, or says the right thing. It's the song that keeps echoing in your head and Grey's Anatomy marathons and quotes that are so fiercely beautiful and the Food Network. I wanted to share some of my little things, the little things that have kept me going over this past little while.
http://jstarshollow.blogspot.com/2012/02/oh-places-you-go.html

http://natalielloyd.blogspot.com/2012/02/paid-in-roses.html

http://sojourner-ephraim.blogspot.com/2012/02/valentines-chocolate.html

http://www.youtube.com/watch?v=Jqng6SVDclc (Moves like Jagger by Maroon 5. I don't usually like to get songs that are popular, but I kinda fell in love with this one! There's actually kind of a funny story behind this...)

"Jesus. He met us right where we were, right there on the cold hard tile of my sun room, and He took two broken people, so different and yet so much more alike and showed us the scars on His hands and said its ok if we have some too because the scars are always drawing us to Him."

"Hope is like a bird that senses the dawn and carefully starts to sing while it is still dark."

"She wasn't bitter. She was sad though. But it was a hopeful kind of sad. The kind of sad that just takes time."

"A bird doesn't sing because it has an answer, it sings because it has a song."

Update

Just wanted to let everyone know that today went as well as it could have (Not that it was good for me, I was miserable, but good as in the tests went smoothly.)
The tests weren't fun for me. Spending 5 hours at the medical clinic defiantly wasn't my idea of a good time. It defiantly wasn't fun to be stabbed with ultrasound wands and lay under scanners and submit myself to following every order for every little thing that had to go along with every test. I came home, logged into school (I'd already done my math yesterday so I just had some reading to do) and promptly fell asleep. I was so exhausted. I slept for a while but when I woke up I didn't feel much better, still felt tired and achy. I always find I'm way more self conscious when I'm getting these kind of tests done, because I'm still hooked up and everytime somebody looks at me oddly (Which almost everyone does) I always wonder what they're thinking, if they're wondering what happened to the poor girl sitting in the corner being fed by a tube to make her like this. (In my mind I always think they think I look like a freak, but maybe that's my own caring and nobody really thinks that. I don't know.) I drank enough water to sink the titanic (Ok not quite, but by the end of it I was almost throwing up every sip I drank.) I found too, that when I wasn't thinking I would always catch myself with little tears in my eyes, just sitting there. Despite my furious scrubbing I still smell like medical tape (Maybe from the sticky stuff on the back of the heart monitor stickers?)
I am so glad this day is over. This day was hard, but not scary. I find I don't have the luxury of being scared anymore, not by this. I need to be strong right now, I can't risk falling apart. If I let myself be scared, whose going to be strong? So I'll be strong, because it's what is required. These fears inside me, they're almost numb now, barely able to be felt at all. They just get pushed to the back. I don't get to be scared, not over things like this.

It's about a girl who is on the cusp of becoming someone.. A girl who may not know what she wants right now, and she may not know who she is right now, but who deserves the chance to find out

My life in 10 Quotes

Your faith can’t be based on what God does, but who God is

Success is not final, failure is not fatal, it is the courage to continue that counts

You know those moments when you totally don't wanna cry, but... you're not quite sure what else to do?

My life was a sea of conflicting emotions, but the one thing kept me going was our bond... our connection. It made me feel like I wasn't alone, like i was part of something special

Are you upset little friend? Have you been lying awake worrying? Well, dont worry...I'm here. The flood waters will recede...The famine will end...The sun will shine tomorrow...and I will always be here to take care of you

What the heart once owned, it shall never lose

It's always darkest before the dawn

I am hoping with a fragile hope

Life is messy and full of heartbreaking tradgedies that I never see coming until they envelop me, but somehow love keeps me moving through all of that

I love you

Softly Singing on a Monday

• Today started out crazy. That probably wasn't a good sign of what was to come. My mom woke me up at 8:30 (P.S days when someone wakes me up aren't usually good days. I am not a morning person.) telling me she was taking my brother (Jaxon) to the hospital. He had a super high fever and was hallucinating. So she took Jaxon to the hospital, and I got up and decided to make my sister, the birthday girl's, favorite breakfast. My dad came home in the afternoon after spending the morning between the hospital and work and took me to a different hospital for bloodwork. As much as I love those lab ladies, I could go without their vampire-ish blood taking ways. 2 pokes and one bandaid later we were on our way back home. My dad took my sister to her friend's house so she could have a semi-fun birthday. In trying to be positive, here's some things that were good about this crazy Monday.



• I got 100% on my math assignment. That excited me so much! I am very proud of myself, and very very happy.



• I was eating a bagle for a snack, and the way the light hit the bagle it looked like I was eating a little glitter circle. Not a big thing, but it made me smile. I like the thought of eating glitter circles.



• quotes, and music, and friends. These 3 things make up a good day. And today, I had plenty of all 3. But I can never have too much ;)



• Hope. Because there is always, always hope

Some days there won't be a song in your heart. Sing anyway

You've got a Friend in Me

She's my person
She's the calm to my loud
She's the loving arms behind my neediness
She's the one who always helps me sort through my problems, and never needs me to help me sort through hers, making me feel like the loser friend :)
She's my best friend, my person. She's amazing and wonderful and fabulous. She doesn't get annoyed when I'm needy to often, and doesn't freak out when I can't find the words to explain my heart ache. She's my person...
Happy 15th Birthday, Cai!

"You were always there when I needed you, never left my side, always there to lean on, and dry the tears I cried. I could always talk to you, you never seemed to mind. Your voice so honest and gentle, your words so honest and kind. I thought I'd never meet someone as special as you are, you're my best friend in the whole world, you're my shooting star"

http://www.youtube.com/watch?v=Nj5cW_wEjIw

Quotes on a Tuesday...

"It's good to be scared. It means you still have something to lose"

"Everyone is always asking me what’s wrong, but I don’t even think it makes any sense, it’s just... my heart hurts"

"It's like dealing with a tornado. Once you are close enough to see it coming, there's nothing to do but weather the storm"

"Snuggle in God's arms. When you are hurting, when you feel lonely, left out. Let Him cradle you, comfort you, reassure you of His all-sufficient power and love."

"It's like a storm. That cuts a path. It breaks your will. It feels like that. You think you’re lost. But you’re not lost, on your own. You’re not alone. I will stand by you. I will help you through. When you've done all you can do. And you can't cope. I will dry your eyes. I will fight your fight. I will hold you tight. And I won't let go..."

"It makes me sad. And then it makes me laugh, because sadness at any length is terrifying"

"We're friends, real friends. And that means, no matter how long it takes, when you finally do decide to look back, I’ll still be here"

"Are you upset little friend? Have you been lying awake worrying? Well, dont worry...I'm here. The flood waters will recede...The famine will end...The sun will shine tomorrow...and I will always be here to take care of you"

Speak

"The Importent thing isn't what you say, it's that you say something."


My Best Friend, Cairo's, tiny cousin Sadie at her first chemo treatment. Keep on smiling, Sadie girl.
"There is something you must remember, You are braver then you believe, stronger then you seem, and smarter then you think."

Wordless Wednesday

Dear Little Girl Me

Ever have those moments when it seems like everything is happening too fast? Like blink and you'll miss years of your life? I know parents are supposed to feel that way as they watch their kids grow up, but do you ever feel like that? I know I do. I'm feeling like that right now, that when I blink again I'll be all grown up and heading off to college and starting a family of my own. And it'll all be over, all of this. It seems like not that long ago there I was, a little girl, waiting on this day, the day that I would finally be a teenager. I remember I practiced for it. My and my best friend, we would dress up, I wore a lovely dalmation spotted coat, and we would walk down the street and imagine what life would be like when we were finally here. We would imagine the boys we would date, the clothes we would wear, the cars we would drive. But we didn't know that teenagers didn't play house on the dirt hill after school. We didn't know that when you got to this place, these teenage years, everything would be so different then you'd imagined it being. Instead of dating and turning heads of all the guys in the building, you'd be sitting there, longing for the guy you have a crush on to just look at you and smile. Instead of wearing all the cool clothes, you would wear tee shirts and jeans, because you could totally break your ankle in heels. Instead of driving around that cool convertable, you would be sitting behind the wheel of your mom's SUV, scared to death, afraid that one wrong move would send you over the cliff. We didn't know that when we where little because teenagers were these people that could do no wrong, they were these idols. And now we're here. Now we're at the place where nothing is as simple as it used to be. Looking back, it seems like everything has happened so fast. I'm not that little girl anymore, I'm the teenager that little girl always wanted to be. But it's not at all like I thought it would be and sometimes I just want to curl up beneath the covers and close my eyes and bring that little girl back. I just want to play house on that dirt hill after school. I just want to go back, to be that carefree little girl again. Because everything is changing so fast and I just want to put on the brakes and say "Stop!" I'm not ready to be this teenager who drives and has responsibilities and cares more then she would like to admit about how she looks or boys. I want to go back, but no matter how much I want to freeze time it's not going to happen. No matter how much I wish I could just stay here forever, never get older, I know that something amazing is waiting for me just over the horizon, in the short time it will take me to fully 'grow up.' And that no matter how fast this ride is going and no matter how much I want it to stop, it's here now and if I blink I just might miss everything that may have been importent to me, all these memories. This is who the little girl has become. This is the teenager the little girl imagined herself as. She's not coordinated or a beauty queen. She doesn't turn the heads of every guy or drive a cool car or wear cool clothes. But she has everything she needs. She has friends and family who love her, even when she's clumsy and crazy. Somehow, all those other things little girl me wanted don't seem so importent anymore. Sure, I still care about how I look or about catching the attention of that oh-so-lovely boy sitting across the room, but that's not 'it.' So, my dear little girl self, I may not have everything you wanted me to have, but I have everything I need. I may not be able to stop time but I can enjoy every single minute of this amazing ride. Somehow, I think you would be proud of the young woman you became.

'I've apparently been the victim of growing up, which apparently happens to all of us at one point or another. It's been going on for quite some time now, without me knowing it. I've found that growing up can mean a lot of things. For me, it doesn't mean I should become somebody completely new and stop loving the things I used to love. It means I've just added more things to my list'

Family is...

What is family? They were the people who claimed you. In good, in bad, in parts or in whole, they were the ones who showed up, who stayed in there, regardless. We had many families over time. Our family of origin, the family we created, as well as the groups you moved through while all of this was happening: friends, lovers, sometimes even strangers. None of them were perfect, and we couldn't expect them to be. You couldn't make any one person your world. The trick was to take what each could give you and build a world from it

I am....

Procrastinating. We're leaving for town in just over an hour, and I still have math to do, which I do not want to do, so I am procrastinating, hoping that, just maybe, I won't have enough time and will have to wait until tomorrow. It's not a very smart plan, but it's true.
For Father's day yesterday, (If you missed the pic of my dad and cute little adorable me that I posted yesterday, go check it out. I'm pretty cute :) We went to see Kung Foo Panda 2. Besides making me have an insatisfiable craving for chinese food, it was good. It was in 3D, and I'm not a huge fan of 3D, but the movie was still good. There was a lot of good quotes, sort of made me wish that I could have had my notebook and been able to write stuff down in the dark. Sadly, I do not have that super power, and I forgot to bring a notebook.
And... in case you were looking for a book to read this summer, here's my second pick for the summer reading list. It is... Motercycles, Sushi and One Strange Book by author Nancy Rue. I did a review on it last summer, as part of a book tour. For some reason it's not letting me post the link, but if you want to check it out, it's from August of last year, titled Motercycles, Sushi and One Strange Book, and it's also under reviews. I'll add reviews to the label of this post, and then if you click on that you should be able to see all the reviews. I hope. I'm reading it again, because I am so in love with it. If I had to pick a favorite book, like an all time top favorite, this one would definatly be in the running. So check it out.
And... I probably should stop procrastinating and at least get SOME work done before we leave.

'A couple of hundred years ago, Benjamin Franklin shared with the world the secret of his success. Never leave that till tomorrow, he said, which you can do today. This is the man who discovered electricity. You think more people would listen to what he had to say. I don't know why we put things off, but if I had to guess, I'd have to say it has a lot to do with fear. Fear of failure, fear of rejection, sometimes the fear is just of making a decision, because what if you're wrong? What if you're making a mistake you can't undo? The early bird catches the worm. A stitch in time saves nine. He who hesitates is lost. We can't pretend we hadn't been told. We've all heard the proverbs, heard the philosophers, heard our grandparents warning us about wasted time, heard the poets urging us to seize the day. Still sometimes we have to see for ourselves. We have to make our own mistakes. We have to learn our own lessons. We have to sweep today's possibility under tomorrow's rug until we can't anymore. Until we finally understand for ourselves what Benjamin Franklin really meant. That knowing is better than wondering, that waking is better than sleeping, and even the biggest failure, even the worst, beat's never trying'

Wordless Wednesday/Quote of the day