Just Stop

Stop.

Stop the onslaught of time and how it rushes through your fingers like the sand you scoop by the sea.

Stop the pressure of the future that you can’t figure out and how it weighs on your mind all the time.

Stop doubting that you can and will do incredible things with your life and your talents and your passion for everything you love.

Stop feeling so small. Stop crying in the middle of the night, gasping for breath on your blue carpet because your life is not what you imagined it would be. Stop letting the fear get the better of you.

Just stop.

 

~~~

Life is the ups and the downs as much as it is the benign. I would never choose not to feel all of this, because all of this is what it’s all about. As always, I thank you for the kind comments you leave. You don’t even know me, and yet you know my lowest moments. Life is a journey and I’ve found myself with you along for the ride, and that is truly a gift.

Love,

Ella

 

Song Quote:

We’ve got younger faces than our hearts are letting on. -Novels, Rusty Clanton (https://www.youtube.com/watch?v=kc5X66kFIMg)

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

A Conversation

Wake up, Ella. You’re letting life pass you by. Remember when you said you wouldn’t do that? You wouldn’t lose sight of the bigger picture?

Gone is the confidence. Gone is the positivity. Gone is the girl that believes she can weather anything with a good attitude. 

Remember when you wrote about the little things? You should really figure out how to find those again. 

Instead is a common foe: pain. 

I know it’s hard, sweetie. But you used to see magic everywhere… I bet you there’s still magic.

Pain is led on a high horse to a royal throne, where he presides with a mighty hand and a nasty manner. 

Can you remember the last time you were truly happy?

His land is Headache Kingdom, and his name: Sir Hurts-A-Lot.

You know what, don’t think about past happiness. Think about the future. How are you going to find a way to be happy?

Live obediently under his rule or risk his wrath.

~~~

Ella

Song Quote:

For diamonds do appear to be just like broken glass to me. -Northern Downpour, Panic At The Disco

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

A Cry Guide: For Your Pleasure

So you need a cry party?

A true crier needs no audience. Ladies, remember, cry for yourself and nobody else. If you don’t cry for yourself, who will?

Find the perfect time when you can be alone. Purposely leave your tissues far away to add the lovely element of dragging your limp, heaving body to them.

Pretty tissues are advised

Pretty tissues are advised

As you feel the tears start, encourage them to keep coming. The more the merrier. When the moment feels right, begin keening sounds. With every breath hike the volume until reaching desired level. The aim is to achieve a point where you’re screaming out your pain and the tears are nothing but a sidekick.

All done? If you left tears behind, tidy them up with a tissue. Discretion is advised. No one can take away the special moments if they don’t know about them.

Did that cry make you feel better? I know I feel better.

Until we cry again,

Ella

Song Quote:

It’s all right to cry, even my dad does sometimes. So don’t wipe your eyes, tears remind you you’re alive. –Even My Dad Does Sometimes, Ed Sheeran

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

I’m Going Home

 

antique-art-curtains-home-photo-Favim.com-136368

Not my window, but a dreamy window indeed

 

I can totally do this.

The past few days have been filled with pain and the past few nights have been filled with consciousness. I am tired and tired of studying. I am sick and suffering, but I can do this.

Two tests left. My window is open to let the cold, crisp air in and onto my face, and every now and then I remember to breathe. I have a playlist of Coldplay, Maroon 5 and Beyoncé to keep me from getting too bored of my material, and a yellow highlighter that matches my dried mango (god’s gift to man).

A classic study set-up.

Not only am I motivated and uplifted by the light I can glimpse at the end of the tunnel, but I now have something to look forward to: I’m going home. I moved away from my hometown when I was 7, and in many ways where I live now is a larger part of my identity. It’s where my family is, where most of my friends are, my school, and my past ten years of life. This culture now feels as much an inseparable part of my identity as the culture of my early childhood.

But still, the thought of going back for a visit makes the words “I’m going home!” shout in my mind, bang around and jump up and down (primarily as I try to study). For once I have something to look forward to, and by golly, is it uplifting.

I just feel like I can do this, I can make it through these tests and then go home. The first time I went back to visit was many years after we moved away, and at the sight of my neighborhood I began to cry in the back of the cab. Those tears were because I missed it all and I wished we’d never moved. The tears I’m sure will come this time will not be the same. I’m no longer a 7-year-old girl. In a few months time I will turn 18 and I will need to accept that the fibromyalgia will become a part of my adult life too.

This time I will cry because I really need a break from the reality of my life that is so often sad and frustrating.

This time I will cry tears of joy, because despite it all I love the person I have become and I know I would not be the same if we had never moved away.

This time I will cry, and then leave the tears aside and focus on being where I am. The Dalai Lama said that there are only two days that do not exist: yesterday and tomorrow. In my life, my yesterdays always carry over to my todays (in the form of a headache) and I can’t help but worry about all of my tomorrows.

This time I will cry.

Yours,

Ella

 

Song Quote:

Millions of miles from home in the swirling, swimming on, when I’m rolling with the thunder, but bleed from thorns, leave a light, leave a light on. –Midnight, Coldplay

 

Stay tuned for part 2! I plan to write all about my trip.

Part 1: I’m Going Home

Part 2: I’m Home!

A Letter to My Enemy

Writing-A-Letter

Dear Fibromyalgia,

I’d like to talk doogree with you.

           Doogree- straightforwardly, with no beating around the bush

I am no longer naïve enough to believe that despite your presence I can make my life the way I’d like it to be. I am old enough now to realize that I can never make peace with you. I will never be my truest self until I am rid of you.

Did you hear that? I will not be free until I am free of you.

You are constricting me. You are suffocating me. You are the enemy I fear, the pain I dread, and the negative I cannot escape. You. Suck.

My friends wonder how I do it, how I live with you in my life. I wonder why.

I just want to make sure you are not mistaken on this: we are not friends. It has been years and I tolerate you, but that does not mean I do not hate you with every fiber of my being.

See what I did there?

There is not much more to say.

The next time I write to you, I hope it will be a goodbye.

Ella

Song Quote:

Light up, light up, as if you have a choice. –Run, Snow Patrol

On Self Defense and Being Awkward

images-13

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!