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!

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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

Proportional Pain and My Guilty Genes

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Scrabble doesn’t come with a question mark, so we’ll have to make do without one

There once was a girl (A) who didn’t pass her cheerleader tryouts, and she was upset. There was also a girl (B) whose boyfriend dumped her, and she was upset. But then there was a girl (C) whose friend was dying of cancer, and she was upset.

Before us we have three (fictional) girls, and each is upset. Who, in your opinion, is most upset?

Please don’t answer that because it’s a trick question. I believe that it’s not fair to compare people’s pain because each is suffering in their own right. So yes, one situation seems way more serious than the others, but does that mean that the other two aren’t upset and don’t have a right to be? No. The fact that one person is worried about cancer and the other is worried about boys doesn’t mean that the one worrying about boys isn’t distraught and in pain, and you can’t discount that.

That said, I am human and sometimes I fail at upholding my own high standards. I look at this girl who is throwing a tantrum because she didn’t get the teacher she wanted for a certain subject and can’t stop thinking about girls in many parts of the world who have to fight to get an education, and often don’t win. I want to scream at her, “just appreciate what you have!”

But then those thoughts lead me to one of the most depressing inner conversations I regularly have. I know I’m suffering, and I know my pain is real, but at the same time look at the world, look at how many people live in terrible pain due to poor hygiene and distance from medical help, and see how many of them continue living completely normally. In comparison, I’m just acting like a baby. But those thoughts don’t make my pain go away and it still gets in the way of me doing everything people my age do.

So when I have these conversations, I force myself to the conclusion that it is important to keep things in proportion and not feel too sorry for myself, because compared to some my troubles are not that bad. I do think you need to keep going and try to pick yourself up, and that’s what I do. But there is also a real reason for sadness, and it’s okay to let yourself feel it.

When someone I know is suffering from a horrible headache, I bite my tongue and never let the “now you know how I feel all the time” escape. But I always think it. It’s not that I think their pain is lesser because it’s a one off thing, it’s just that it gets frustrating when people have no way to understand what I’m going through. I want him or her, for just a minute, to try to imagine what it’s like to feel what he or she is feeling every day and how hard it would be to manage.

Then I feel guilty. For not focusing solely on the person I’m with, but mostly for treating myself like I’m the top-sufferer, like I’m the most unfortunate. I promise you I do not forget how lucky I am to have everything that I have. But then after feeling guilty, I feel even guiltier because it’s almost like I just betrayed myself by my sort of accusation that I’m just exaggerating.

It’s exhausting.

So to girl A I say that there will be more opportunities in life and this way she’ll have more free time to hang out with her friends. To girl B I say that he’s a fool for breaking up with her and if she ever needs a wing-woman I’m her girl. To girl C I tell her how sorry I am and offer her my shoulder.

I allow myself only a minute to contemplate how it seems no one is ever that happy.

 

Yours truly,

Ella

 

Song Quote:

I find it hard to take, when people run in circles it’s a very, very mad world. -Mad World, Tears for Fears

 

Next Week:

My Relationship with Taylor Swift

Get ready to tweet along with me using #TaylorReadThis, because I need your help getting her to see it! So as of next Sunday when I put it up, we’re going to bombard twitter with this hash tag and the link to the post and try to get her attention. You with me?!

Chronicle of a Rereader

As little kids, we all get used to hearing the same stories before bed every night, and most of us love it. Somewhere along the way, when we learn how to read by ourselves, many stop enjoying reading something they’ve already read again. I am not one of those. I love rereading books.

I form an emotional connection with every (good) book that I read and with the characters in said book. I usually become super invested in them and I feel like I know them. My sister will never let me live down the moment when I came downstairs crying because a character in my book died. It’s not the crying she won’t let me forget. It’s my explanation for why it was so horrible: “I’ve known him his whole life!” When I reread a book, I get to spend time with these characters that I loved so much the previous time, and it never seems to bother me that I already know what happens.

Usually when I reread a book I also notice things I didn’t notice before. Be it a comment from a character that seemed insignificant (but isn’t) or a description of a place that I overlooked, every time I read a book the story becomes a little richer for me. The best example for this is, of course, Harry Potter. Don’t look surprised. You all knew this moment was coming.

I have read the entire Harry Potter series (which consists of 7 books), 7 times. That’s 1,084,170 words in the whole series x 7 = 7,589,190 words. I won’t talk about this for too long, because if I let myself get into it this post will be 18 pages long and consist almost entirely of gushiness. BUT, I will just say that every time I read the series I get something new out of it, and with every reread I noticed additional clues JK Rowling strewed throughout (which just means that she’s a genius, not that I’m oblivious). The most recent reread was just a few months ago, and I had thirty pages left of the sixth book, so I was sitting in my school lobby and trying to finish it. But, a character dies right at the end, and I always cry hysterically when any of the characters die. Just picture this scene: I am curled up in a ball with the book held in front of me, sobbing, and the bell goes so the lobby starts to fill up with students. Mainly people just walk by and go “Oh Ella!” but the lovely Beatrice comes to stand in front of me and starts to laugh. “Sixth time?” she says. “Seventh,” I correct her. True friendship.

harry-buona

The reason why I wish my school looked like Hogwarts…

Beyond the emotional connection I form with characters of a book, there is also an element of my own experiences over the period of time that I’m reading it. For instance, when I read “Tell it to the Skies”, a book by Erica James, I would meet a few friends in the morning before school started and update them with the new developments in the storyline. So now, when I reread it, I remember the feeling of them all waiting to hear me speak (which didn’t happen often during that time) and of sharing the excitement with them. I can use books to slip back to different times in my life and revisit them.

But alas, we cannot forget one more important factor here: whether I have any new books I feel like reading. Sometimes, I just want to read a story that I know is good and that I know I like. Like a few weeks ago, when I was worried about something medical that was creeping up and creeping me out, I chose to reread a fairytale book I love because I knew I would be able to take comfort in escaping in my mind to that other place. Sometimes I feel too not well to even read, but most of the time, if I really don’t feel good, I can read a book and just escape. Books are amazingly therapeutic, and rereading them is too. I hope you enjoy them as much as I do.

 

 

Love,

Ella

 

Song Quote:

Drench yourself in words unspoken. –Unwritten, Natasha Bedingfield

 

Announcement:

A few months ago, Julie Ryan contacted me and interviewed me for her fibro warrior segment. I just wanted to let you all know that for the first time she’s opening it up and inviting you to contact her and share your own story! Don’t miss out on this opportunity, you can find all of the info here: http://countingmyspoons.com/2014/08/fibro-warrior-share-story/

Good luck and enjoy!

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! 

To Growing Up and Staying Young – 17

party ballons

With warm summer air surrounding us and the sounds of the crickets drifting in through my open window, I curled into my mother’s body and she hugged me to her; though I may be bigger than I was on the day I was born, exactly seventeen years ago, I will forever be her little baby and she will always be my mother.

She told me last year that as she turned seventeen, she was sad to part with sixteen. Today, I understand the way she felt then. Though sixteen might not have been exactly glamorous or particularly spectacular, it will forever hold a special place in my heart.

A lot has changed this year. I gained freedom, in a way, because I started and completed the whole process of learning how to drive and getting my license. Finally, something that everyone my age is tackling and mastering, and I could participate just liked everyone else. I even mastered it quickly and well, if I do say so myself. I probably annoy people a lot at this point when I talk about driving, but it’s fun to be the expert and the sage around my friends (I’m one of the only ones who can drive so far) on a topic unrelated to medical things.

The way I think about things has changed, drastically. I just approach things in a better way now. I keep up my positive thinking and I’ve developed an inner sense of humor that I’ve always had into a shield and a mood booster. I see humor in a lot of places I didn’t use to see it, and I cherish that change. It’s a change for the better.

I’m also more cautious, in a way, but at the same time I dare myself to do things I never would have done a year ago. I’m cautious with what I say and how much I share, not for fear of hurting someone else’s feelings, but for fear of sharing thoughts and feelings that I’m not yet sure about. I used to just blurb out whatever I was thinking, but now I take the time to actually form my thoughts before speaking and weigh the weight of what I’m sharing and how frustrated I will get if I can’t explain myself properly.

But I also take myself out of my comfort zone: I go places alone, I call people and talk on the phone, I do the things I know I should do but always feel awkward doing. I’ve just developed this way of approaching things and talking myself through them, and it’s starting to feel like I can tackle the things that have always intimidated me. I’m starting from the smaller things, like those I mentioned earlier, and at some point I will have the courage to face the bigger ones.

I also made the switch from thinking of all of the things I would like to do to actually doing them. I do more than talk, nowadays. Take, for example, my horrendous lack in general knowledge. For a bunch of years now I’ve been saying that I don’t know how I’ve been in school for so many years and yet there are basic things that I don’t know. This year, I just started educating myself. I bought a book called “The Knowledge Book”, and I read it before bed.

I’m just very aware of how I’m changing and how I’m learning to accept myself more and more. That’s another major change this year, my self-confidence. It’s been hard learning to accept my body with all that it puts me through, and that affected my self-confidence for a long time. But I’ve somehow learned how to separate fibromyalgia from my body, and because of that I’m learning to accept and like the way I look.

It’s exhilarating to realize that I’m getting older and there’s a whole new world of opportunities opening ahead of me, and absolutely terrifying at the same time. I’m sad to lose the feeling of being a child, of being protected by these strong and kind parents who are nothing but my parents. It’s huge to realize and to process that parents are people too, and to think of them as people before parents, but important. You do lose something though with that realization, because you can never go back. On the on hand, I still want them to take care of me and be there all the time, but at the same time the independent woman in me is showing her true colors and I just can’t wait to get out there in the world.

I’m sure it won’t be easy, but with every passing day I feel more and more ready to do it. To live life.

I propose a toast, to growing up and staying young forever.

 

Yours truly,

Ella

 

Song Quote:

Time may change me, but I can’t trace time. –Changes, David Bowie

 

You Thief Me Not

 

Who stole the cookie from the cookie jar? It was probably the same person that stole the words from my brain. Yes, surely it is one and the same. I’m thinking, if we join forces and try to capture the culprit and force him to return the stolen goods, we can all benefit and maybe even save others from the same terrible fate.

I think this thief preys on the weak. My brain is probably super easy to tap these days, what with all I’m demanding of it. Not only does it have to remember to tell my heart to pump and my muscles to move, it also needs to memorize copious amounts of information and regurgitate them on paper during a few high-pressure hours. Beyond those, it also has to constantly encourage my body to keep moving and keep coming up with new thoughts and fantasies to distract me from my pain. I sympathize with it, truly. That’s why I don’t blame my poor brain for being so vulnerable. It’s not its fault.

Now that we’ve established how the thief chooses its next victims, let’s move on to how he executes his crimes. My brain is most susceptible when I’m sleeping, of course, but I think that those hours are relatively safe because I close my shutters at night. Shutters keep brains safe, I believe. After much pondering, I have concluded that he must be operating while I sit down to write. This makes sense. Do you get it? It’s the perfect moment to act, while my brain is open and spewing, he can just come and pick out the best of the best.

Is the thief working alone? So I believe, for is he were not I would surely see someone else gallivanting with my words, and it has not come to that. Yet.

How will the thief be stopped? How do I restore my words to their proper domain and protect the future ones from being lost?

This is my plea for help,

Ella

 

Song Quote:

As he faced the sun he cast no shadow, bound with all the weight of all the words he tried to say. –Cast No Shadow, Oasis

 

P.s. If you help, I promise to share the cookies with you when we reclaim them.