Kiss me congratulations.

Kiss me congratulations

Because it’s always one foot in front of the other

And I’ve

Lost track

Of the days.

It’s the beauty of unbearable pain.

 

Kiss me congratulations

Because I got a new job

And I have a new apartment

And

      I.      Am.

Trying.

 

Kiss me congratulations

Because I can see and I can tell you

That the sky is as blue as the breeze

And the birds fly as high as the melodies.

I can see and I can tell you

That sometimes sight and speech

Can take a slight toll

On me.

It isn’t that everything is falling apart around me

It’s that I’m falling apart inside.

 

Kiss me congratulations

Because being strong has left me weak.

I promised that in my old age I would fill

The room around me

With all that is said and done.

Memories of a life lived and the people I lived it with.

Feelings I felt once before, not again,

And thoughts I only had back then.

 

Kiss me congratulations

Because maybe I don’t need to

Be in my old age to need to

Fill the room around me.

Maybe right now, more than anything,

I need a room full of phantom bodies dancing in the woods

To make me want to dance again.

 

So kiss me congratulations

And do it like you mean it.

 

~

Ella

 

“And we won’t place any stock in old days, let’s save up for something new.” -Rusty Clanton

 

I Wonder

Please give me a pass for sounding incredibly pathetic right now, but I have a mental catalog of really great hugs I’ve received. I suddenly thought of someone I haven’t seen in about a year who gave me a great hug the last time we saw each other. It was a lingering hand hug – you know, the kind where the hug is officially over but neither removes their hands quickly. It occurred to me that I might have written in my journal about that hug, so I started digging through my drawers and retrieving old diaries.

As I was looking through them, page by page, I was struck by how much I have changed and how little my life has. The entries from last year could be the ones from yesterday, and the ones from two years ago could be the ones I’ll write tomorrow. I write with more finesse, maybe, or a slight twang of additional maturity, but I’m still dealing with the same difficulties. No matter how I change, advance, grow or learn, I can’t get away from this pervasive problem of my life.

I never imagined I would graduate high school and be sick. I’ve accepted a lot and have a lot of accepting left to do, but nothing can alter the fact that I’m greatly displeased with what is happening in my life. The things I’ve been writing here for over two years, about how little control I have over what happens to me and how useless hopes seem to be, are as relevant as they’ve ever been.

Now don’t get me a wrong, I’m a pro at making the best of whatever situation I find myself in. I believe in seeing and appreciating the good as I live, and remind myself every day how important it is not to see good only in retrospect. Not to look back on a time in my life and see some good aspect of it that I didn’t realize was there at the time. So as I suffer and smile through it I make lists in my mind of everything that is good, and this helps me. Helps me some, but not quite enough. Not enough to cover the sadness.

The sadness. It runs deep, maybe through my veins or my nerves, maybe in my heart or in my soul. I prefer to be alone with it, to retreat at times and allow myself to feel it as it courses, because I have a lot to cry for. I have a lot to be thankful for, but also a lot to cry for. The pain is a constant that seems to stem from my very core and that makes no sense, but the sadness I understand from the inside out. It’s there in the silence and it resonates in music, it thrums in my ears as I walk and buzzes in front of my eyes as I sleep. It’s a part of me, an integral component in my days. I live with it and it lives in me. But I no longer wonder why.

I try to remember that maybe the fact that I can’t imagine my future means it is destined to be better than anything I ever could imagine. I read my diaries and see the process of becoming who I am right now, a person I genuinely like. I can’t put my finger on just when it happened, but I have become an adult. I think practically and reasonably about decisions in my life, and I spend so much of my time now thinking of what I’d like to do with it. What do I want to study? What shall my profession be? Where do I want to live? (How will I afford that?) Which is the ladder I would like to climb?

It’s a quick step to the spiral of anxiety, realizing no matter how I plan I cannot conquer this disease and cannot live to my fullest potential. I harbored a secret hope that after finishing high school I would start to feel better and that I’d slowly but surely rise out of the pain. But alas, I’m just as sick as I was before, and I need to start figuring out how to manage adulthood in my current state. This point in my life is about proving that even if I am sick, I can still be okay.

I remember my childhood so vividly. I remember crying and thinking that good tears should not go to waste, trying to find a parent in the house and show them my state to receive some extra hugs. The real world doesn’t dole out any extra hugs when I suffer. I no longer wonder why.

I am still, in my essence, happy. But I am still, in my reality, sad. I mourn for the things I cannot have, cannot do and cannot be. I mourn.

There’s doubt. Isn’t there always? I doubt that I will ever get better. I doubt that I will live to see a time of peace in the world. I doubt that… that…

Well, this leads us to a sore spot. I know I’m lovable, okay? I know that. It’s not one of the things I doubt. It’s just something that has yet to be proven. I feel so silly for writing this, but in a way I feel it should be recorded just the same as all my other feelings.

No one has taken an interest. I’m the last of my friends… I’ve never been asked out, never been kissed, never been the object of someone’s crush. And I know my time will come, that I just haven’t met the right person yet, and that we each have our own timelines. But it makes me wonder. I wonder: why hasn’t anyone taken an interest?

When will it be my time? My time to be healthy, my time to be loved, my time to be free…

I wonder and will continue to wonder, but one thing can be said for sure, and that is that time doesn’t stop. In this moment I am older than I have ever been before and the youngest I will ever be again, and that in itself is a beautiful thing. Maybe life won’t disappoint me.

I know we’ll be fine when we learn to love the ride.

Love,

Ella

Song Quote:

If I fell in love a thousand times, would it all make sense? –Sense, Tom Odell

The Endless Ands

And what about those nights when I don’t want to get up the next morning? When giving up is the easier option, because really, who would love me like this anyway?

And as I write these words I wait for the fight to kick in, for the anger to strike me and tell me not to believe that. But I wait like I wait for health: hopelessly.

And what if I’m tired of waiting?

And as I contemplate the bed I am getting into, I wonder about the bed I will wake up to. Will it have been slept in? Will I have spent another open-eyed night wishing the sun would rise more quickly and yet not rise at all?

And I have two arms. One I wrap around my body, tightly, because there is no one next to me to do it. One I keep free to wipe tears. The pain is too much.

And the fear is crippling. When health is but a fantasy, the future is but a question mark.

And I want to be hopeful. Sometimes it feels like I am winning, because I have a voice in my mind that tells me that right now is not really all that bad. Manageable. Definitely not the worst I’ve had. Perspective. You know the sort.

But there’s always a tonight, and I don’t want to get up in the morning.

~~~

Ella

Song Quote:

I got locked inside a sadness, I got lost inside my head, couldn’t find a light to make me glow. -Holes, Layla

Describe the Pain

You ask me how it feels.

How it feels?

Describe the pain.

The pain?

That I can’t.

~~~

It is a thin, gray substance that coats my entire body. It is elastic – it clings to every fold, crevice, dip and bulge. It is a glove, not a mitten, covering each of my fingers individually. It is a film around my eyeballs. It’s a thick platform beneath the soles of my feet. It is weaved within the hair that I chopped off. It is my outer layer of skin.

It is like a rubber band. If I focus, really hard, I can push it out – away from me – enough to let air in. If I push it really far, it lets hope in. But you must understand what being rubber means: it will always snap back. The minute you forget to focus on the light and hope, it smacks back, vacuuming itself to your body.

You can see through it, in the way that others don’t see it at all. You can see what you’re missing, but there isn’t a thing you can do about it. It is like walking with a heavy cloud above your head every day, except the cloud is not above you but within you.

It is as strong as I am. The harder I fight to be rid of it, the harder it fights to stay with me. Because it is me. It’s my brain, it’s my wiring, and it’s my nerves. It has my nerve.

~~~

Ella

Song Quote:

We’re tethered to the story we must tell. -Turning Page, Sleeping At Last

The Hospital Anecdote

I never wanted to end up in the hospital. I never wanted to get sick in the first place.

I’m so exhausted. Yesterday was a nightmare, and I wish I could erase it from my memory.

But I keep thinking of two things: the song that played in my head while I listened to other people moan and cry out in pain, and the hair cut I’ve been dreaming of for years.

“All I need’s a whisper in a world that only shouts.” Poignant as it is, I’ve related to it since I heard it for the very first time. But after everything I went through yesterday, it was the soundtrack and is still at the forefront of my mind. I don’t deserve what has happened to me. I am a good person, and this is awful stuff. The pain I suffer through is not fair, and yesterday was a bad dream that really happened.

I’m getting a pixie cut. This is so unrelated, but lying in bed today, all day, I keep thinking about it. How free I’ll feel, how cute it’ll look and how I can’t wait to release the weight of all of this long hair. I never realized what a burden it was until I decided to cut it off.

This haircut is now linked, hand in hand, with graduation. I naturally create things to look forward when I’m staring at a bleak stretch of time. I’m about to finish high school and I have no clue what my life will look like. The fear threatens to cripple me every day. Because here, look what happened! I have three weeks left to the year and it was so important to me to feel like I’m not missing out on anything, so I pushed myself beyond my limit and yesterday happened.

Yesterday.

Isn’t it fun when you end up in the hospital? When the dramatics went down in school and they carried you through the building on a gurney to the ambulance?

My own voice is echoing in my mind. “Why are you being so mean?” I tried to yell at the paramedics. They were hurting me, but I could barely talk. I don’t know if I screamed it or not.

Isn’t it funny that I just turned eighteen? At eighteen and three days I wasn’t allowed to go to the children’s hospital and had to go through the regular emergency room. I spent seven hours hearing awful sounds and seeing awful sights. All I need is a whisper.

From the worse pain to the shaking hands, from the tightening sensations to the embarrassment, from the worry and fear to the panic. From the mob of spectators to the scary paramedics, from the rough yanking and dragging to the collapsing, from the stairs to the chair and the chair to the gurney. From the sirens and the movement to the bed-to-bed, from the ugly curtains and needles and sleepy eyes to the waiting and waiting and waiting. The sounds of suffering, the yelp of the in pain. Curtains don’t block sound. The man who yelled that the nurses don’t care if his wife dies. The man was removed by security. I cried and cried – the woman was alone now. I want to go home. The world only shouts.

Erase. Erase. Erase. Delete. Backspace.

Now I should think of a way to look at this differently. I shouldn’t be angry at the world; I should appreciate what didn’t go wrong.

My friends were amazing. They acted quickly, and well. They love me. It upsets me that they saw me like that. They love me. My family loves me. Yesterday proved how beautiful my support system is. I have people, and I am so grateful for this.

What my body did to me yesterday was a reminder that I’m not superwoman. I can’t do it all. It might not be fair, and it might upset me very much, but I just can’t do everything I want to. I need to take care of myself, slow down, be more careful and go back to living life in small doses. If I could choose a super power, it would be healing. To be able to look at someone who is suffering and heal them. I saw so much pain yesterday.

These last few tests are going to be a struggle, but I will manage them and I will graduate. The next few days will be spent in bed, but after that I will pick myself up. I will get a pixie cut and then I will feel free and adult and optimistic about my future. It will mark this transition in my life, and it will be a sign that I can control what happens to me and how I deal with it all.

Ella.

Song Quote:

Well it’s hard to find a reason, when all you have is doubts, Hard to see inside yourself when you can’t see your way out, Hard to find an answer when the questions won’t come out. Everyone’s filling me up with noise; I don’t know what they’re talking about. You see all I need’s a whisper, in a world that only shouts. –Whispers, Passenger

Honesty

The stark difference between outside and inside doesn’t pass my notice. On the outside, I am calm, silent and still. Inside, there is so much movement it makes me sick. Or is the sick the cause of the movement? My heart is all aflutter; it feels as though everything within me is jumping, shivering, quaking.

They call my name. I walk in. I am only thoughts and yet I have no thoughts. We sit. The two men are seated before us. They tell me to talk. I’m surprised to find words leaving my mouth. I barely remember what I said.

Then one of the men starts talking, and I hate the things he says. Implying I have complete control over my body, and I could be better if I wanted to be. Implying I don’t get out of bed. Implying I’m making things sound worse than they are. The other man tells him to leave me alone. He doesn’t. And one thing he said shines in bright letters across the reel of my mind: “maybe if she just tries she’ll be better”. Maybe if he just tries he’ll be less stupid.

I want to run away. But heaven knows I can’t run. All I know I can do is cry, but I don’t. Then we’re getting up, and we’re walking out of the room, and the other kids my age look up at my face. I know they are there for the same reason I am, and they both look good. Like me. Put together. Dressed well. But wrong inside. A part of me wants to smile at them, encourage them, but I can’t seem to control the muscles of my face. Oh, I remember. It’s because I’m holding them tight so I don’t sob. Good thing I remembered.

SONY DSC

I am sweating. I can feel myself shaking, but I don’t know if that is only inside. I still want to cry. I want to go home. I don’t want to stand in line. I don’t want to repeat the verdict five times to unsympathetic people. Isn’t the verdict good though? Isn’t it what I wanted to hear? The outcome was the best it could have been, I suppose. I know this makes no sense to anyone but me. I apologize.

But I hold it together, and I make it home. Composure. I am a master at it. I go about the rest of my day, but now it is night, and it all decomposes. I can’t hold it together anymore. The composure, I mean. Not the rest. The rest I hold together whether I like it or not, because there is no other alternative for me. But the composure – yes, that is gone. Officially. Like my documents are today.

I would wish you a good whatever, but I am pretty sure that is not what it is.

Ella

 

Song Quote:

I’m sorry for the honesty, but I had to get this off my chest. –The Man, Ed Sheeran

AUTHOR”S NOTE:

I really am sorry for the kind of depressing post today. I wrote this the other day after a not so fun experience, and as I always try to be honest with you and share how I truly feel about things I decided to put this up. There are moments when I feel like I can handle anything, and moments when I don’t. Sometimes everything just becomes a bit much for me to handle. The good news is, when I feel like that I write it down and then I feel a little better.

Totally unrelated, but… Time is almost up! You need to send in your competition entries today! You can find all of the information about the competition and how to enter right here: http://smurl.ws/0zi1tm  It’s still anyone’s game! 

Okay, What Now?

 

 

Stick Figures

 

I want to reach out my hand and participate, but before my hand can move a fog wafts before my brain and all optional activity halts. I stop thinking, stop moving, and stop feeling. Then, surprise surprise, I feel disconnected. For the past two weeks, it has just felt like I’m going through the motions but I’m not really there. Though feeling disconnected can happen to anyone, this feels like fibro fog. I hate it.

The only times when I’ve felt present in these couple of weeks has been while driving. I’ve had four driving lessons so far, and I love it. When I’m driving, I have to be present, and nothing else exists in my brain except the steering wheel, the pedals, the driving teacher and the road. And other cars and pedestrians, I guess. But it’s like there is nothing wrong with life, nothing sad or hard going on, no headache even, because I am completely focused on being alert and aware of my surroundings and in control of where I’m headed. It’s a welcome change, being so wholly focused on one thing that I can’t feel pain.

Sometimes I just don’t know what to do with myself. Lately I end up in these situations where I get to a certain point and I go blank; what now? Like talking to a group of people, for example: we’re talking, getting along, I feel happy to be with people, and then suddenly I just feel my brain being wiped clear and I’m vacant inside. I’m looking at the people around me, at my friends, and I just don’t know what I’m supposed to do next. Do I say something? Should I get up? Should I stuff food into my mouth? I usually do the latter, but it has become increasingly hard seeing as I’ve been put on a gluten-free, dairy-free, processed-free diet for medical reasons. You don’t really get to have comfort food when you’re on a fun-free diet.

I told my friend about this void that appears within me, and about how unmotivated I seem to be (notice the missing post that should have shown up a week ago but that I never wrote), and she told me that she understands and maybe I need to give myself a break. So I did. Well, sort of. I did whatever homework was for the following day, but didn’t plan ahead and do the opposite of procrastination (which is what I usually do because I seem to have been born that way). It helped a little, mainly with feeling guilty about not getting things done; when you decided not to do it, it’s less bad than just not having the inclination to do it. That said, the feeling still showed up today, and I feel it looking back on everything that has gone on. I still feel detached.

I’ve decided it’s just a defense mechanism, and it will go away. I’m sure everyone gets this way sometimes. We wouldn’t be human if we didn’t have a wide range of emotions, and feeling disconnected is somewhere on that range. This is life: I embrace it. There are going to be ups and downs. Like hills. Which I have mastered. Ooh I have a good metaphor similie thing!!! I know when to press the gas, and when to use the breaks- I know how to take care of myself. Ah get it?! Oh my, I am so so proud right now. Just saying.

Also, Tim over on tcopelandfilm/storiesnotworthreading wrote something that was inspired by my blog. I suggest reading our discussion at the bottom of the page because it actually made way more sense to me after he replied to my comment and explained where he was going with it. Thank you, Tim, it meant a lot to see that what I’ve been writing has been able to inspire someone else.                                                http://storiesnotworthreading.wordpress.com/2013/12/27/hinged-lives/

 

Yours truly,

Ella

Song Quote:

I took a walk on a Saturday night, fog in the air, just to make my mind seem clear. –My Fault, Imagine Dragons

P.s. It’s been forever since I sat down to write something. This feels good. Anyone else notice that I’m getting frighteningly close to a thousand followers?! Technically it doesn’t count until 1001, because I do follow myself, but 1000 is just a prettier number.