Sunlight.

Sunlight, it

Shines bright in my eyes,

Paints me in bronze,

Gifts me with

Glistening, golden, effervescent eyelashes and

Fluttering, autumn, amber eyelids and now

Everything I see is hazy and psychedelic as the –

 

Sunlight, it

Washes over me and

Pseudo-solves all of

My woes

Now, I am nothing but an ethereal extension

Of the brilliant, luminous ball of flame

That gleams with the promise

My woes

Won’t come back when the –

 

Sunlight, it

Smothers me with sprawling warmth

That catches on my breathe and

Settles in my pores and

Coats my core and

Drips off my limbs

As I turn every surface of me towards the –

 

Sunlight, it

Shatters, as the rays reach me and splinter

Into the thinnest whispers of copper threads

That I see everywhere I look and

I see even with my eyes closed as they

Find and fill every crevice around

As the sounds

Hush

And the movements

Still

And nothing in the world exists

Except

This single split second in time and the –

Sunlight.

~~~

Ella

Song Quote:

It goes and it’s golden like sands of time. -Golden, Zayn

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Beach Happiness

Last year, on a particularly hard day, I spoke on the phone with my friend, Beatrice, about why we were both so depressed. We had many reasons, and this led us to a discussion about the different types of sadness. The list covers a lot of ground, including: hypothetical sadness, death sadness, projecting sadness, jealousy sadness, bittersweet sadness, extreme weather sadness… we ended up listing about 75 types.

 

After half an hour of compiling this list, I forced her to help me come up with the different types of happiness. Surprisingly, we found this extremely difficult. When we challenged ourselves to think of the bad it poured out of us as though we’d been mentally preparing our whole lives for the moment we’d need to recount it. But the good? It was slow to come to mind. Over the course of a few days, with the help of a couple more friends, we eventually had a list consisting of around 50 types of happiness.

 

One of these types is beach happiness. Neither Beatrice nor I thought of it initially, but it rings true for all of my peers and I. When I’m on the beach I just feel… peaceful, I suppose. The sound of the waves replaces the sound of worry in my mind.

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I stand on the beach looking out at the sea and marvel at how tiny I am compared to it all. If my life is so small compared to the world, then the problems in my life amount to nearly nothing. I’m never one to belittle my own suffering or the hefty challenges I face every day, but during certain rare moments I truly believe they aren’t all that important. The beach supplies the majority of these moments.

 

Yesterday was an odd summer day in the middle of February so I flocked to the beach with my friend and her boyfriend. The water was freezing but I almost prefer feeling numb to feeling my normal pain. The smell of the water and the sunscreen smeared on my (pathetically) sensitive skin remind me of summers past, in just the way that bug spray reminds me of hiking trails around my childhood hometown.

 

My mom reminded me that one year I had a birthday party at the beach and that I hated it. I remember the reasons for this being that sand got on my birthday cake and watermelon, that we never had time for the dance party or limbo (I’ve always been quite the planner), and that a boy from my class (who was not invited) saw me in my bathing suit (mortification. I hate you, Speedo.)

 

My mother remembered the reason being that I got salt water in my eye and that at that exact moment the love affair between the sea and I became a tale of regret and disappointment.

 

Safe to say the discord has dissipated, and I have kept a special place in my heart for the beach throughout it all. One of my biggest regrets in life is that I’m forced to miss out on fun – a seemingly harmless substance the majority of young adults seek and occasionally experience. I’m more of an 80-year-old stuck in an 18-year-old’s body type, and I have to “take care of my health”. Which means I often need to miss out on all sorts of experiences because fun has a clear consequence for me – pain. Pain leads to sadness, but mainly, pain leads to more pain. More pain leads to trouble sleeping, which leads to extra fatigue, which leads to extra pain, which leads to even more trouble sleeping… it’s only one of the viscous cycles that people with chronic illnesses need to live with.

 

But just because I have less fun doesn’t mean I have to be less happy. This year I’ve been privy to a few types of happiness that weren’t on my list before: proving myself happiness, spreading joy happiness, professional growth happiness and above all – somehow, it will all be okay happiness.

 

At the very least, that’s how I feel after I go to the beach.

 

Love,

Ella

 

Song Quote:

Take me back to the basics and the simple life, tell me all of the things that make you feel at ease. –Ease, Troye Sivan

 

Have a suggestion to add to my lists? Share in the comments below please!

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

I Deserve a Nobel Prize

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At the end of last year, my classmates and I took certain country-wide tests that are a pretty big deal. I only took two, and therefore this year I have eleven. It’s going to be great fun. But the point is, we get our test results back only at the beginning of the following year.

Milling around the lobby of our school, the entire 11th and 12th grade (it’s not that many, don’t get excited, it comes out to 25 students or so) were chatting excitedly with each other. A senior was standing with all of the grade sheets (discreetly stapled so as only your name is visible), and handing them out. I walked up, took a deep breath as he searched for mine, and prepared myself.

Standing against the wall, my teacher happened to pass by (he taught one of the two subjects I was tested on), and I asked him if he wanted to be present for the historic moment. Yes, that’s how I worded it. He waited while I pried open the sheet of paper, shrieked, and passed it to him. 100! On both! On everything! He passed it to the principal who was passing by, who shrieked too (sort of) and congratulated me. All of that hard work last year, it served its purpose.

I joined the milling teenagers and pretty much everyone was satisfied with their grades (our school’s average on these tests is in the nineties). I was chatting with two girls about how despite being happy with the grade, it feels like there’s something missing…. Then I graced them with this beautiful dream scenario (the presenter is Ryan Seacrest, the result of watching the American Idol finale the other day):

I’m standing in a really fancy dress on a big stage, while a good-looking man in a suit (with pretty hair) walks up holding a gold envelope. The presenter (there will be a presenter) narrates to the audience, “The good-looking man is walking down stage to Ella, and is holding the gold results envelope in his right hand while his hair shines and swishes. He is presenting Ella with it. This is it, ladies and gentlemen, here- we- go. Ella is prying open the envelope, the results are in, she shoots, she…. She’s smiling, she scores!”

And the hall erupts into erroneous applause, everyone is on their feet, cheering and stamping! Confetti is falling from the heavens as my test scores flash on the screens behind me. A red carpet is being unrolled before me, and the good-looking man holds my hand as I navigate my way into the people. I’m laughing and crying, camera flashes are going off like I’m actually photogenic, and everyone is overjoyed on my behalf. The day is forever declared the “Ella did it” day, to be celebrated by no one, ever.

We were all talking about how this slip of paper doesn’t feel substantial enough, and we really just deserve the Nobel Prize. As my friend corrected though, we’ll settle for a simple Oscar or Emmy.

Instead, we just went on with our day. But that could have been nice. As it is, I’m very happy with my test scores and I’m glad all of my friends did well as well. This is exactly what I need to fill me with some sort of non-depressed feelings about starting school again. Now I’m a little bit buoyed. Mini yay!

Yours truly,

Ella

P.s. This post is dedicated to my friends, with whom I spent whole days cramming for these tests. Our study dates have a special place in my heart, forever.

Song Quote:

These are the days that bind you together, forever, and these little things will define you, forever. –Bad Blood, Bastille (alright, so the name of the song sounds negative, but this quote isn’t, so just go with it.)

What A Wonderful World

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Took this on the plane on the way to London! Just realized it looks like every other cloud picture ever taken, but oh well….

Hundreds of years from now, an old notebook will be discovered, in which a girl wrote about her thoughts and experiences as she travelled. People will marvel, at those things called ‘paper’, and ‘ink’. They will get a sense of what it used to be like to travel, with planes and trains, cabs and busses. They will be shocked at the fact that once upon a time, someone had to sit down and write what they were feeling, that they stopped because their arm was tired.

 

But for now, in the present, I’m very simply keeping a diary. I’m a week and two days into my vacation, and my notebook has about 100 pages full of words. I’m now in London, and before that I was in Budapest (Hungary), and Bratislava (Slovakia). I’m travelling with my parents and two older sisters.

 

It’s been amazing, seeing these different places where people speak these weird languages (not England, clearly), and lead different lives. There were a few things I saw everywhere I went, and these were them:

 

–       Babies! I just absolutely adore babies!

–       Couples, who were holding hands/ hugging/ kissing/ all of the above

–       Monuments to people the locals killed (which totally pissed me off. Let’s go murder people, then we’ll erect a statue that says how tragic it is they died. Yay! Not.)

–       Outfits/ fashion trends/ clothing. This has been particularly fun, because my sisters and I have taught our dad to notice it too, so every now and then he’ll go, “I liked that dress”, “That looked interesting”, or “Is that a mini, midi or maxi skirt?”

–       Other tourists.

 

Of course, there were many more, but I happen to not have my notebook with me right now. It’s actually not been such a great day, that’s why I have time to write. Here’s the part in most posts where the Fibromyalgia* segues itself in, and this post is like any other.  It’s been hard travelling while not feeling well, extremely hard. It takes away from the enjoyment and the sense of peace and wellness you usually get on vacation. I so wish I felt better, I wish this didn’t have to segue in all the time (though I like the word ‘segue’).

 

Despite all of that, and my bad mood today stemming from feeling like dog poo, I have been having a great time. It’s nice to not be at home, or at school. Change of pace, yeah? That was in a British accent. Almost everything they say here ends with a question, right? There it was again. In fact, I’ve been reading all of this in an accent. Random craziness, no?

 

I’ve met bunches of interesting people, had experiences that I’m not sure I liked, but that I’ll never forget (and that’s worth something- I’ll probably write about a lot of them in the near future), and felt like I gained world perspective again and again.  You know me, and my Big Thinking Moments**. Let’s just say that I feel like I have been living Big Thinking Moments most of the time here.  No matter what the rest of vacation is like, it was worth it for those.

 

As I wrote in my notebook (I just found it),

“… had like this barrage of Big Thinking Moments. I realize I’m really hopeful about the world and about life, and I’m just realizing how amazing everything is. That we are alive, we have thoughts, we have bodies, they have functions. We all look different, act different, dress different, but are built the same. There are families, and places around the world, and beauty, and genius. There is creativity, and history, and society, and money, and… all of it! Everything!     ……

     I have so much respect for life, and I just want to live, experience, learn, and love, and I feel like those aren’t just words, like I know what they are and what they mean. I’m really just excited, not in a rush, living and feeling in the here and now, and I want to say this: I LOVE LIFE. I do. No matter what, life is the most incredible thing out there. I hope and pray I can feel like this for the rest of time.”

 

Wow, well I’m glad I found my notebook just now. I don’t have anything else to add to that, I just really agree with myself.

 

I hope you love life too,

Ella

 

Song Quote:

The heart is hard to translate, It has a language of its own, It talks in tongues and quiet sighs, and prayers and proclamations. –All This and Heaven Too, Florence + The Machine  (This is one of my absolute favorite quotes, I reserve the rights to use it again!)

 

*Check out my new page, “Fibro- what?!”, for info on what that is.

 

** I hope I actually did explain those well enough, because I’m using the term as though everyone understands what they mean. Should I add a page about them? I recently discovered that you can add pages. It’s cool. I think I’m in love. Not really. I just like them. We have a friendly working relationship with them.

It’s a Landmark

Reaching for the light

People everywhere celebrate landmarks in life. Birthdays, anniversaries, new beginnings and so on and so forth.

This week, I’m celebrating the end of the school year. Every student out there will tell you how and why they celebrate finishing the year, and almost all of the reasons will be along the lines of “I worked really hard this year, and I’m happy to get a break”. That’s true for me too, don’t get me wrong. But it’s also something more.

June 20th marked the end of my first school year with Fibromyalgia. It means I survived a whole year of school, whilst suffering from the head aches, the fatigue, the joint pains, and that now it’s over. Everyone is asking me how it feels, do I feel so great that I succeeded, am I overjoyed that the school year is over. To be perfectly honest though, it just kind of feels… blah? Not blah, just that it doesn’t feel like that huge of a deal.

I’m not explaining myself right. I feel happy, and satisfied, and proud (I have the highest GPA of my grade!!!). It’s not that I’m thinking the year wasn’t that bad and therefore it’s no big deal to finish it. It’s not that. I actually had a really, really hard year. I’m elated that despite all of my hardships, I managed to achieve what I set my mind to, which was to not let Fibromyalgia affect my grades.

I think it just hasn’t fully set in yet, that I’ve finished. This is only really my 3rd day of vacation, because of the weekend, which I always have off. Maybe by next week I’ll be feeling it for real.

For now, I’ve been trying to get the most out of days without school. I have reorganized and labeled our spice drawer, I have buffed up my iTunes library, I have read, I have watched TV, I have gone to get frozen yogurt, I have painted, I have sketched, I have gone to art class, I have shopped (online), I have exercised, I have gone to the beach, I have… Have I mentioned I’ve only been on vacation since Thursday?

Keeping busy, I know how to do that.

I really want to make the best of this summer. I have so little free time during the year, now is when I get to engage in all the projects I don’t usually have time for.

I’m going to tell you a story now.

It is custom, where I live, to go to the beach on the last day of school. So, the entire middle and high school population of the extended area flock to the beach, to “celebrate”. Ultimately, each person gets an inch by inch square of sand, and an ankle in the water. T’is enjoyable. My friends discovered that a certain area of a certain beach, that is farther away, is less crowded, and you can rent chairs to sit on (though because my friends are the way they are, they usually put their bags on them and lay on the floor to tan. I really don’t get it). It means we needed to take two busses and a cab to get there.

We went to the same place last year, and it was no fun. This year, because these girls have the gift of people-speaking, we agreed to go to the same place. This time, though, something nice happened. We arrived in two groups, and the other group had arrived before mine. When we walked to “our spot”, one of the girls looked up and said, “Ella, I got you a chair, I thought it might be easier for you to sit that way”. I swear I almost burst out crying. It only just took a year for this girl to acknowledge that I have a physical disability, and that she should be nice about it. Most of me was just really happy that she was nice, but a part of me was upset that it took her this long. Of course, there was a rotation of who was sitting on the chair, because I wanted to be in the water (not lying on the sand tanning). But I think that’s what made my afternoon, that the girl who laughed when I told her about my condition was finally finding kindness, deep, deep down inside her. I feel like it’s a personal accomplishment.

FIN.

Incredible story, right? I know.

I smell summer in the air. I like summer fashion, summer hair dos, summer time tables, summer freedom. Waking up to a blue sky is uplifting, and I’m feeling like I can accomplish things. I don’t know what exactly, but what’s important is that I feel like I can.

Wishing you all a beautiful, happy, accomplishment-full summer,

Ella

Song Quote:

Where does the time all go forever? It hides in your eyes, in a picture, in another place’s sky. -More Than Letters, Benjamin Francis Leftwich