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

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Remember the Truth

Isn’t it crazy that you write the truth and then forget how it feels? You believe in looking at things as beautiful, but you simply don’t remember to. Because bad monsters clout everything, because you can’t remember what it’s like to feel like yourself, because sadness is so overwhelming while happiness is so fleeting.

But yes. For the first time in forever, you feel like you’re going to be okay. And for even just a few days, you felt good. You existed under a new sky, you rediscovered what it is to hope, you felt optimistic about new opportunities and you felt worthy of love. You also believed in it.

A new sky... (Taken in Baveno, Italy, this summer)

A new sky…
(Taken in Baveno, Italy, this summer)

So relax. Take a deep breath. Tell your brain that everything is going to be okay. Sleep well. Dream happy.

Just live. Isn’t it beautiful seeing the magic?

Ella

Song Quote:

I just want to be ok today. –Be OK, Ingrid Michaelson

(The third in an unintentional trilogy… Some Truths, Actual Truth, Remember the Truth.)

Actual Truth

Dear Abandoned Blog,

It’s not that I don’t love you anymore. Sometimes I just feel I’ve said all there is to say. The picture of my life has not yet evolved; I am still sick and I am still sick of it (more and more each day). Countless times I have moved beyond the moments of thinking I can’t take it anymore.

This summer marks four years since my headaches started and three years since diagnosis. What have I learned in all this time? Many things, that’s for sure, but none that make me feel like it’s been worth it.

It’s hard to be in pain all the time. As I once wrote, “My friends wonder how I do it, and I wonder why.” I often find myself in this numb state, where my anger is equal to my pain level and as the two compete I turn into a sort of zombie. I care so much that I just can’t care anymore, because caring doesn’t get me anywhere.

A problem shared is a problem cut in two, but I can’t share this pain because it is mine alone to bear. I’m by myself with it, feeling it day in and day out. I barely sleep anymore. I spend hours every night staring at the ceiling, blinking away tears, because the pain is so bad and there’s nothing I can do but survive it. All I want is for someone to hold me and make the pain go away.

Dear blog of mine, please don’t feel hurt. As you can see, I’ve been dealing with a lot. I’m very unhappy.

Since I last wrote to you, I graduated. I was in charge of graduation, and for three months I put my heart and soul into planning a beautiful evening. It took a lot out of me. I didn’t cry until after I got my diploma and walked offstage. It was a moment of relief, realizing it all went off without a hitch and I had no more responsibilities, but also a moment of great, deep sadness. I’m never going to get those years back.

I’ve been sick for so long, and the past four months have pretty much been the worst I’ve ever had physically. I told myself it was the pressure. It was the stress of graduation work, tests, social events, etc. But it’s been a month since I graduated, and I’m not doing very well. I’m in a pain spiral and it’s dreadful.

Please understand, dear blog, that it is not about you. It’s about me.

I love you,

Ella

Song Quote:

The tears come streaming down your face when you lose something you can’t replace. –Fix You, Coldplay

Teardrops on the Stairs

I left a path of teardrops on the stairs today. I think I’m going crazy. I walked in a circle, sat in a circle, turned in a circle.

I cried today. I cried because I needed to scream. In the rare few hours with the house to myself I wandered around and trailed tears behind me. I cried on the floor. I cried on a chair. Tears and tears and tears and tears.

Today I let myself feel the self-pity and fall apart. I let myself cry and cry and cry.

My body is rocking. Rocking back and forth as my brain tries to cope with the pain it’s sending, so distraught over causing its own demise. I blame you, brain.

I cried because I’m angry. I’ve lost so much in my life because of this and I feel my future slipping through my fingers. The decisions, the important and meaningful decisions, are being made not by me but by my illness, whose existence I’ve been bearing upon myself, by myself, for the last four years.

I wish I could end this on some uplifting note of how I carry myself gracefully and nobly through the pain, but I cannot. Today I bowed beneath the pain, I broke. The task is to build myself up again, but I can’t locate the part in me that knows how to do that. Maybe it broke.

Today I left a trail of tears on the stairs, and I can’t find a tissue to clean it up. I fear someone else will slip as I have.

Ella.

Song Quote:

You’ve been crying out for forever, but forever’s come and gone. -When You Break, Bear’s Den

Run For Me?

Oh, what I would give to run again.

I wonder, had I realized then

(Then, as a younger person)

That I would one day not be able to run…

Would I have done it differently?

Would I have gone quicker, longer, farther, harder, freer?

Do you go quicker, longer, farther, harder, freer?

Because I go slowly. I ache as I walk. If I were to run, I would cry as I ran. Can you run for me? Can you satisfy this burning dullness in the pit of my inner athlete by running for me?

I can’t run. Sometimes it feels like I can’t live. Sometimes I need to write this down in the middle of the night because all I want to do is run. Sometimes all I want is for someone to figure out the truth of why I can’t run and to fix me. Cure me. Save me.

Someone. Do it. I can’t run until you do. Can you take extra footsteps for me? Extra footfalls, heavy breaths, aching ribs, rippling muscles, sweaty palms, frizzy hair. Make up for my lack.

I’ll watch you run. I’ll sit here in a chair and track you with my eyes as you run by me, around me in circles, on top of me, because I can’t run for myself and I’m nothing to you. Nothing. Just a nothing who can’t run.

Make me run.

Ella.

Song quote:

Run until you feel your lungs bleeding. -Run, Hozier

 

On Self Defense and Being Awkward

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A* has intimidated my entire grade since we were in our early teens. He’s tall, broad, staring and deep-voiced. One might think his stutter could even out the playing field a bit, but it simply gives him an additional edge: it’s ominous.

When his legs were hurt this summer, my friend and I wanted to go visit him in the hospital to be nice and show we cared. But what do you bring with you to visit someone you don’t really know? I had no clue as to what to bring, say or do. So I went with what I know: writing. I wrote him a card. Damn that stupid card.

We got there and instantly felt out of place, because his friends were there and he didn’t really know us that well. And we were intimidated. We tried to stick as close to the wall as possible to leave room for the people he actually liked to be near him. We kind of wanted to leave, but we were dependent on busses to get home and we didn’t want to wait outside the hospital for forever. So we stood, awkwardly, praying we disappeared into the background.

Finally, an hour later, it was time to go catch our bus. But I was still holding the letter that I’d taken out of my bag as we’d entered, and had since clasped in my clammy claws of hands. Eventually I said, “Where can I put this?” and he said, “Here, you can give it to me.” I passed it to him, wanting to snatch it back and burn it.

Months later, I was sitting in the school lobby and looked up to see him standing next to me. Standing. I squeaked out “hi!” (Intimidated).

“Hey. How are you?”

“I’m fine, I’m fine. You’re walking!”

“Limping,” he corrected, and thus ended our interaction.

After that, they told us in class to bring our gym clothing for the next day, because A was going to teach us some self-defense. A few weeks before there had been an incident with a knife outside our school that ended, thankfully, with no injuries, but with an injured sense of security.

Knowing I wouldn’t be able to participate fully, I decided to at least dress the part. I might stand out because of everything else, but I refuse to stick out because of my clothing. So I come in my t-shirt, leggings and sneakers, and slowly take in that everyone else on the field is dressed normally. So much for that.

I also knew that I would have to let A and the other instructor know in advance that I wouldn’t be taking part in everything and I would be more of an observer. In theory, that part shouldn’t have been so bad.

Except that I miscalculated how far away they were from me. I started off at my normal walking pace, which I wouldn’t call slow but also can’t categorize as fast. If they hadn’t looked up I would have been fine. I would have had my time to collect my thoughts and call out to them in my own time. But they looked up, and saw me coming from a distance. They halted their conversation and focused on watching me approach them. Let me stress this: they were just standing there, watching me walk to them. Eye contact? Yeah, there was some of that. Awkward eye contact? Yeah, heaps of that. I kept walking and walking and walking and it felt like I might never reach them.

Then came the dilemma: do I speed up, now that they see me coming? I mean, these hulks of men might get impatient and why would I want to add fire to their wrath? But I decided to stick to my original pace, feeling that that might exude a sense of calm and normalcy about my gait. Once I was within earshot, one of them called out, “Hi.”

“Hi,” I said. Steady breaths. I didn’t feel as short as I thought I would, but that didn’t improve things much. “So here’s the thing I have health problems and I can’t participate in everything but it’s okay I came to watch and I’ll do what I can and it will all be fine so yeah thanks.” And breathe.

“Okay.”

Okay. So, I guess I leave now… right? I said what I came to say, but they’re still looking at me. Deciding once again that consistency is best, I turn around walk away from them at my steady pace, except I now feel their eyes on my back (or butt? *Nervously tugs down the hem of her T-shirt*).

Did he read my card? As the thought occurs to me during my time-consuming departure from them, I’m almost sure they can see my blush through the back of my head. He never said anything. I never said anything. Did he read it? Does he think I’m stupid? Am I stupid?

Uh oh, hell no, how do I stop these thoughts? Well, having to turn around and face them as they called us to attention was probably not the best way. Turns out that they were following me, about five paces behind me (of course).

The value of the self-defense that I learned most probably outweighs the discomfort I felt for a few hours, and will likely stick with me for much longer, so I’m going with positivity for this case.

Until the next time I cross paths with A….

Ella

Song Quote:

And the only solution was to stand and fight, and my body was bruised and I was set alight. -If Only For A Night, Florence and the Machine

*Want to guess what A is short for? Leave it in the comments, and get creative!

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.

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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!