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.

Apparently, I am simple.

Baby at the beach

What I felt like doing the second I got out of his office…

I went back to the homeopath, the one that “I’m Not That Simple”  is about. Joyful, right? Well.

First thing he says to me is “Ella. You look better.” I got this feeling inside that I was about to have the most wonderful experience of my entire life. Really. I’m being serious.

No I’m not. First, he did the same thing that annoyed me last time (which I could say about a hundred things, so I’ll be specific). He read out every symptom I have, and asked me if I still have each one.

Me: We can just skip this, I feel exactly the same.

Dr: Exactly the same?

Me: Yes.

Dr: But you look better.

Me: I tanned.

Dr: You have more color in your face.

Me: Because I tanned.

Dr: So you still have the head aches?

Me: Yes.

Dr: And they still start in the morning?

Off we go again, repeating it all. I’m really not going to rant about this too much, I did that last time. The one major thing that bothered me (again) was that he was still trying to peg my Fibromyalgia on one specific event.

Dr: Ella, what do you think happened that gave you Fibromyalgia?

Me: I don’t know.

Dr: (pulls a snotty face) you can give a better answer than that, Ella. (Annoying usage of my name.)

Me: I don’t know. It happened. Life happens.

Dr: What do you mean by that?

Me: What do you mean what do I mean? Stuff happens, in life. Fibromyalgia happened.

Dr: So there wasn’t anything specific?

Me: No. We went over this last time.

Dr: Well Ella, I can’t remember everything.

Clearly. I was starting to get very upset at this point, because I know they have to ask, and often Fibro is caused by accidents or traumatic incidents, but we had already been over it. We had already told him it wasn’t like that, and that it wasn’t a psychological trigger. It literally just happened. I started getting this pain, then a year later, that pain, a few months later, another, and within another few months I was a wreck, and we were scrambling for appointments at the children’s hospital to get me diagnosed. It happened. It’s happening.

Do you want to hear the best part?

Dr: Oh, now Ella’s angry. She’s got that fire in her eyes. You definitely seem better than last time.

Me: Yeah, last time I was kind of having a bad day (slightly sarcastic, you can imagine).

Dr: A very bad day.

Me: Yeah. Thanks.

That’s it, I’m done now. It sucked. He put me on a new “remedy” (didn’t explain this one either), and just to make it more fun, I have to take it twice a day rather the one, like last time. I eat like a bird, people. I need food, every 20 minutes. With this remedy, I have to not eat anything for half an hour, take it, then wait another half hour before eating. The problem is, I forget to take it until I get hungry, and then I think, shit. The medicine. So I take it, but that extra half hour is torture because I’m already really hungry.

But, it seems I will just have to deal.

I get major points for not losing my temper.

Your truly,

Ella

Song Quote:

A white blank page and a swelling rage… So tell me now, where was my fault? -White Blank Page, Mumford and Sons

P.s. What do you guys think about me adding a page (next to Home and About) about Fibromyalgia? The technicalities, I mean, what it is (to the best of my ability), what my personal experience is, sources for more info? Let me know.

 

Update (07.24.13): I’m off an vacation in a few days, so I don’t know when I’ll be able to post again or when I can sit down and work on the info page (I probably won’t have access to wifi for a while). Sit tight, I will return with a lot to tell, and the info page will make its way here. Thank you all again!

Wake Up Tomorrow

Tomorrow, I am going to wake up, and everything will be different. Better.

When I wake up tomorrow, my first thought will not be about pain. My first emotions will not be anxiety, fear, apprehension and sadness. I will wake up warm, cocooned in my blanket, feeling refreshed. When I open my eyes, I will look forward to my day.

When I wake up tomorrow, I will not be upset with my family. I will not feel like they say the wrong things. I will not be annoyed with them.

When I wake up tomorrow, I will not have to forcefully remind myself to appreciate what I have. Everything will feel so right that appreciation will come naturally. I will look at my life, and be pleased.

When I wake up tomorrow, I will look in the mirror and be happy with what I see. I will not think about how that girl’s hair looks better, how that girl has a better profile, or how that girl’s figure is nicer. That girl will not haunt my mirror-gazing.

When I wake up tomorrow, my day will not scare me. I will not think of each day as an age, each hour as a mountain to climb. I’ll be excited, about the possibilities each hour poses.

When I wake up tomorrow, I will no longer have Fibromyalgia.

These are my tomorrows. I live in today.

When I woke up today, I told myself to think about the dream I had. When I saw my family, I accepted, dealt with, and loved my interactions with them. When I looked at where I live, what I have, and who I know, I willed the appreciation to feel natural. When I looked in the mirror, I smiled. This hour, right now, is full of possibilities.

I have Fibromyalgia.

If I don’t have today, I will never have tomorrow. I welcome you, today.

Yours truly,

Ella

Song Quote:

I awake to find no peace of mind. -Spies, Coldplay

I’m Not That Simple

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I am a person, with feelings, memories, thoughts, opinions, experiences, and a personality. I can’t be described in 140 characters, you can’t get to know me in an hour, and you won’t ever be able to know what I’m thinking.

I had a not so fun experience yesterday. It involved a man, who calls himself a homeopath, who kind of pissed me off. Sorry for the language. I have this little thing, which is that I hate doctors. I’m sure I’m not alone in that. When I was younger, I quite liked them. I would have a sore throat, show up, they would give us a slip of paper, that got us some meds, and my throat would get better. Magic.

But now, the same process occurs, every single time, no matter which doctor it is. I come in, already upset (because I hate doctors), and my mom and I sit down on their uncomfortable chairs. My mom pulls out my humongous medical binder, and hands them a bunch of papers. They take their time, reading it out loud, because of course, I don’t already know what they say. They look up and make disbelieving eye contact when they read about the Fibromyalgia, the cancer, the narrow angles. What is there not to believe?

Then they give me this smile, and say something along the lines of “your life sucks”. But in a condescending way, which is very simply rude. Then they make me repeat everything they just read, and whenever I mention a pain, they ask me what relieves it. I tell them nothing. They repeat me. You know what, I’ll just write this out, it’ll be easier.

Me: My head aches are probably what bother me the most.

Dr: The head aches?

Me: Yes.

Dr: So what helps those?

Me: Nothing.

Dr: Nothing?

Me: Nope.

Dr: You haven’t found anything that helps?

Me: That’s what I’m telling you.

Dr: *disbelieving eye contact, insert variation of “your life sucks”*

Me: *Sigh*

Dr: So what else hurts?

And the whole process repeats itself, over and over again. Then they ask me to step up onto the bed, and they poke me. Literally. Then they ask me if that hurt. I say yes. For instance, the “homeopath” yesterday decided to tap my face (where there are a billion Fibro trigger points). It went like this:

Me: Ow.

Dr: It hurts when I tap your face?

Me: Yes.

Dr: How about now?

Me: You’re still tapping my face, and it still hurts.

Dr: How about if I tap lightly?

Me: Seriously, anytime you tap my face, it’s going to hurt.

Dr: *mumbling* wow, your pain threshold is very low.

Me: No shit, Sherlock. That’s why I’m here.

Although that last line is only said in my head, because I don’t like swearing. Swearing is reserved for doctors.

Anyway, all of that happens every time I go to the doctor, and I put up with it every time. What really pissed me off yesterday was that the “homeopath” told me he wanted to get to know me, know what kind of person I am, because that affects what might help me. So he asked me to describe myself, using a few words. Insert the first paragraph here. So my mom took over, and I just let her talk to him. Then, he was trying to find out if something specific happened that triggered my fibromyalgia. I told him there was nothing, that it just started slowly coming on.

Then my mom said something along the lines of “there’s stress in life, because it’s life. A lot of stuff has been going on for us, if that’s what you’re asking”. Then he asked her what she meant, and she said, “for instance, my mother passed away a couple of years ago”. At which point I started crying, because… because.

So this stupid “homeopath” started trying to connect my Fibromyalgia, with force, to my grandmother dying. He only stopped when I gave him a look and said “I don’t understand why we need to be talking about this”. I’m pretty sure he was scared of me, because he seemed to shrink and changed the subject. Guess what he changed it to? “Do you get angry?”

My god, of course I get angry! For instance, I’m angry at you right now! That’s what I wanted to shout at him. But I didn’t.

Me: I’m human, I get angry sometimes.

Dr: Like when?

Me: When it’s right.

Dr: Do you get angry easily?

Me: I have a lot of patience, if that’s what you’re asking.

Dr: *Insert disbelieving look here.*

Wait, I haven’t even gotten to the best part yet! “Mom, does Ella like being hugged?” I’m not kidding right now. He asked that. So my mom, bless her, said “Of course she does! Gently, of course, so it doesn’t hurt, but she’s a very loving person”. So he turns to me and he says “So who do you give this love to, Ella?” People, you should have seen the look I gave him. As my dad says, if looks could kill…. I crossed my legs and said “The people who deserve it”.

Insert disbelieving look here. Sensing a theme?

I could just go on and on, with all of the horrible things this guy said over an hour. But I won’t, because it’s probably not very interesting or fun to read.

My point is, this “homeopath” decided he had to get to know me, and that he could simply do so. Yeah, right. Jerk.

He ended the meeting with “So Ella, you’re a warm, creative, responsible person. Therefore, I’m going to give you these pills, because with the kind of person you are, that’s what could help”. He set them on the desk in front of me.

Me: What do they do?

Dr: They help even out your body, so it can cope with what its going through.

Me: How do they do that?

Dr: What do you mean?

Me: I mean, there’s a substance in those pills that’s supposed to even me out. How does it do that? What’s the substance?

Dr: That would be a very long discussion.

Me: So?

Dr: These will help, that’s what is important.

Which made me feel like he’s a drug dealer, or that I’m being checked into a psych hospital. What’s for sure, he was totally scared of me at this point.

Me: What does my personality have to do with the pills?

Dr: Sometimes an illness comes to a person, and sometimes the opposite.

Me: And…

Dr: If a person falls, it breaks a bone. The doctors fix the bone, but then, the recovery depends on the person.

Me: Unless the doctors suck and mess something up. But recovery depends on the person’s character, his situation, his support system. Not the pills he’s taking.

I don’t even remember how he answered that one.

I was very happy to leave that office. Except I have to go back in a few weeks. Oh well. I’ll come up with some witty retorts for next time.

You, lovely readers, don’t assume you know me after an hour. That’s why you rock.

Yours truly,

Ella

Song Quote:

Don’t wanna sound ridiculous, but I think you know I’m sick of this. -My Oldest Friend, Andrew Belle

Pancakes Solve Problems

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I made them from scratch!

It’s been a rough couple of days. Sometimes there is just a lingering sadness, that you can’t seem to get rid of. It’s been lingering of late. I’ve been fighting it, these past few days. But the combination of the sadness, of how uncomfortable I have been physically, and of missing my dad (away on business for the past 3 weeks) has just pulled the fight out of me.

It’s a push and pull trick, keeping the sadness at bay. Sometimes it’s easiest to not acknowledge it, sometimes it’s easier to write about it. But no matter what I try, the process always stays the same. I try to fight it for a little while, and then something small will make me cry and everything will come rushing out. Rushing out to myself, though. I don’t share these moments with other people, because that wouldn’t bring to anything good. It’s not a moment where I need a pep-talk, or a hug, or sympathy. It’s a moment where I need to say hello to the sadness, and let it out to roam the room. When I’m ready, I let it back in and I move on.

There’s something funny about the moments that make me cry. They can be totally trivial, like seeing a cat on the side of the road, missing a phone call, someone misunderstanding something I’ve said or realizing I don’t have any milk for my cereal. Other times they truly are upsetting, like today. I got an 88 on my math test, which isn’t that bad a grade, but I was expecting much more. I made one mistake, on the whole test, and it happened to be worth twelve points. If I hadn’t made that mistake, I would have gotten 100. I’ve been working my butt off all year in math, and this was the last test. I studied so hard, and I felt really prepared. I took the test, and it went really well. I came home with a good feeling, and told my whole family that I think I did well, even better than last time (which was a 93). Now I have to tell them all that I got an 88, which, again, is not such a bad grade. It’s just upsetting, is what I’m saying.

So basically, the moment comes and I let the sadness out, in wretched sobs that tear their way out of my soul. I curl up in a ball, cry, and the anguish takes up residence. After a few minutes, I run the bottom of my wrists under cold water, dry my tears, accept the sadness, and go do something productive. That’s how it ends, until the sadness comes a’knockin’ again.

So today, walking home from school, I listened to Chocolate (by The 1975), which is a strangely uplifting song, then I came inside and let myself cry. After that, I marched to the kitchen and made pancakes. Yeah.

I don’t know if I’m ever going to really be able to make the sadness disappear, because it feels like it’s here to stay. But I think I’m handling it pretty well. I’m a dealer. I deal with the stuff that life throws at me (not drugs). And when things get too hard again, I’ll make some more pancakes. Because hey, pancakes solve problems.

Pancaking,

Ella

Song Quote:

Come on, what would you do? Get up on my feet and stop makin’ up tired excuses. -What Would You Do, City High

P.s. Thank you to Kiersten and Chewitt over at Socially Oxward, for nominating me for The Very Inspiring Blog Award! 

http://sociallyoxward.wordpress.com/2013/06/14/the-much-delayed-vi-blogger-award/

The Life of a Nightmare

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Birds sing. It wakes me up, and that’s how my day begins.  I go to school, where I’m liked enough by my peers to not be picked on. My teachers generally think well of me, which is a good thing. I have clothing on my back, clothing that I like, and I’m not ugly.

I work hard at school, and I see the results. I have a couple of friends who care about me. I live close enough to school that I can walk home, and I listen to music, which always makes me happy.

Once home, I have relative freedom. My parents love me. I have two sisters. I have my own computer, and my own room. I have space to do my homework. I can have friends over if I’d like. I live in a fairly safe town (in a not so safe country). I don’t have to be afraid to step out of my door.

Truly, if I look at myself from afar, I can see why people think my life must be great. I have what others covet. Supposedly.  Other people might think of my life as a dream. I appreciate what I have, I’m aware of how wonderful it is to have these things.

But I’m living a nightmare. An invisible nightmare, to those who aren’t me.

When the birds sing, it hurts my head. When I wake up, I awake to pain.  When I go to school, I’m faced with the horrible truth: I’m no kid anymore. I’m light-years older than everyone else, because I have to be.

Everything that sounds good on that list, is awful is you’re feeling constant pain. I can’t think, can’t breathe, can’t exist, without something about my body being wrong. Our bodies were designed to work. Not to spread pain. With one pain, comes another, and my body tries to adjust. But it can’t. Because pain is a domino, and my body can’t let its guard down.

And people think they should covet what I have. I want to throw a tantrum, kick my legs, punch teddy bears and scream at the world: why was I given this? I want to grab the world by its neck, shake it, and make it realize something: just because something looks great, doesn’t mean it is. But more importantly: just because someone looks okay, it doesn’t mean that they are.

To you, something may look like a dream. But more likely, it’s a nightmare.

I can’t sleep at night,

Ella

Song Quote:

Look into my eyes, it’s where my demons hide. -Demons, Imagine Dragons

The Little Things

balloons against sunset

I like writing g’s, because it’s fun. I like bobby pins, balloons, stools, mug handles and zippers. I like honesty, erasers, flags, glue, furniture, faucets, blankets, railings, calculators and magnets.

I like the little things. Only recently have I been able to curate such joy from all of these, and it’s a good thing I have. I’ve been having a hard time, with a lot on my plate. Too much. It’s like when you’re at a brunch, and there are so many good foods that you just take a bunch of everything, but your plate is way too small to hold it all. As much as I try, after piling it high, there simply isn’t any more room for those five pastries and two apples I want as well. No more room.

But then, if I’m going to continue this ridiculous metaphor, I suddenly realize how beautiful it is that apples are juicy, and that the pastry I’m stuffing in my mouth was just dough a few hours ago. I see the stool in the corner, the blanket over the couch, and the mug handle I’m be holding. I’m just so filled with glee that I don’t notice that everything on my plate has just fallen on the floor and is now sticking to it, thanks to the glue I spilled earlier.

FIN metaphor.

What I’m trying to say is, maybe my days will look brighter now that I’m seeing the positive light. That was a pretty sentence. Maybe, this is what I need in order to start coping with everything going on: a little appreciation of the underlying particles of my day.

A few posts ago, I talked about “big thinking moments”, when I realize how big the world is and I have really deep moments. Maybe writing g’s plays into that somehow. You know, that whole “big things are made up of small pieces” talk that I wish I had gotten as a kid, but that I now give myself daily.

Living with Fibromyalgia, a chronic pain illness, you sort of start to realize that if you don’t appreciate the small things you have, you won’t have all that much to appreciate. And that sucks.

So now, I enjoy zipping up my jeans, and I smile at my faucets.  I decorated the entire girls bathroom (at school) with Winnie the Pooh stickers, because maybe that can make someone else smile. I’ve started bringing extra forks with me, so every day, I’m someone else’s hero (because I give them the gift of food. Well, the gift of being able to eat their food. Same silver).

All of these, make me feel that maybe I can live with Fibromyalgia, and maybe I will make it out okay.

Huzzah for the little things.

Yours truly,

Ella

Song Quote:

The world looks better through your eyes. –Firefly, Ed Sheeran

P.s. Just checked, the post about “big thinking moments” was I Am Effervescent.

Ready For a Zombie Apocalypse

You heard me. I’m ready. I have a bunch of vegan and vegetarian friends, there is food hidden all around my room, and my sisters recently counted how many bathtubs and sinks we have and came to the same conclusion I have: we’re ready.

 

Which is not to say we believe in such things. We’re just ready. Better safe than sorry.

 

Okay, obviously I’m kidding. Although everything I have said is true. The friends, the food, the bathtubs- all real. I’m writing this because I only just realized that zombie apocalypses have been a sub-theme of my past few days. Probably because I have been thinking about our worst fears.

 

Are they destined to come true? Because two major ones of mine have.

 

One thing I have been afraid of ever since my sister got sick has been getting Fibromyalgia. Check that off the list people. I was diagnosed with it this summer.

 

Another has been cancer. Put half a check on the list. The growth was around before I was diagnosed with Fibro, but the results of the second biopsy came after. Half a check because it seems like now everything is fine, after the surgery to remove it.

 

My point is, if two core fears of mine have come true in the past nine months, will all of them come true? I watched a documentary portraying a woman who lived her entire life in fear that a man with a knife would break into her house, and then one day it happened. So thinking beyond the fact that I have to stop watching weird documentaries (there are awesome ones about gypsies too), maybe our fears are meant to warn us about what’s going to happen?

If that’s true, I’m in for the long haul.

 

I try not to live my life in fear of anything. When I break that personal policy, it’s to contemplate how awful it would be to lose another family member. But night after night, this idea about fears keeps haunting me: are they going to come true?

 

I’ve had enough suffering in my life, and I’m nowhere near even being an adult. I like to think that maybe I’m getting my suffering over with now, so that when I’m older, I can be more free. If not that positive outlook, then maybe there is just so much suffering planned for my life, that I was done the favor of having it spread out over my entire existence so that it never becomes too much?

 

Deep thoughts such as these are what keeps me up at night. These, and worrying that my non-existent pink piggy bank will be broken into in sleep, worrying that the sun will fall (what would happen…), worrying that I will get a stain on the rug of the family I babysit for (that rug if freakin’ pristine), and worrying that my apple might get depressed. I’m versatile.

I’m going to end this late night rant with one thought- if fears aren’t meant to be foreshadowing our futures, do they do us more bad than good?

Dream happy dreams,

Ella

 

P.s. Starting to see the source of the ‘tired’ in my name?

Song quote:

But it’s harder than you think telling dreams from one another. – Daniel In The Den, Bastille

thinking by Luis Alves

Sick and Sick of It

I miss the old me. I miss the me who could stand for more than three minutes, slice her own food, dance for three hours straight, and who could laugh without feeling pain. I’m letting myself say this: I really miss that girl.

 

Sadly, she’s no longer with us.

 

This is the new me: I have fibromyalgia. It has been defining me without my permission.

 

Fibromyalgia has become more than just my disease; it is my way of life. No matter where I turn, it stops me. I have to take it into consideration, because if I don’t, there are consequences. It trumps everything else in my life. I once described it to my friend as “a scared infant with serious abandonment issues”. If for even one second I manage to enjoy myself and forget it’s presence, it makes sure that I know it’s still there.

 

On August 8th, 2012, I was diagnosed with fibromyalgia. I sat in a waiting room next to a boy with Cerebral Palsy, a smiling little girl whose mother was crying the entire time, and my mother (while my dad worked out insurance details). It was the first time the truth looked me in the face with a smug smirk. It was the first time I allowed myself to wonder what my life would look like when I walked out of the hospital. It was the first time I realized that I would never be a normal girl again.

 

Now I know that when something bad happens to a person, all they want is to go back to where they were before it happened. I think that with hardships, we tend to warp whatever was before into an amazing place we want more than anything. But was it really always that great? Ever since that fateful Wednesday, all I’ve wanted is to go back to the time before my fate was sealed. But today… today I have really felt, for the first time, that there’s no point going back. If I really wanted to go back to a time when I was happy, I would have to go back to age 7, before my family moved to other side of the world and life itself became one big hardship. Looking back, pretty much since then it’s been one thing after another… it just seems like a lot of bad stuff has been coming my way.

 

So considering that, do I really still long for what things were like before I was diagnosed? It wasn’t really all that great. Neither is now. All I can really hope for is that my future is better. I have learned not to tempt fate, never to say “from rock bottom you can only go up”, because I have discovered there are things more bottom than rocks. Like mud. And snakes. And bugs. I really don’t like bugs.

 

I can’t change my past. My attempts to change the present aren’t proving fruitful. And what do I know about my future? What if I find out that for the rest of my life I will be longing for what I have right now? I’m laughing at that thought, in the dead hollow that seems to be my inside, because why would I ever yearn for this nightmare? But who knows. I just hope I don’t.

It’s hard to express my hopes for a brighter future, because when I say them out loud to another person, the crippling thought of “what if I’m still sick? What if by that point, I can’t get out of bed?” comes back to me and I shut up.

 

But to you, I will express these. Here, on this blog, I will write down my thoughts and my hopes for the future. I love writing, and everyone has told me that I have a future in it too. I have a lot of things to say, and I have written a lot of them down. And now I have a place to post them.

If you have any questions for me, feel free to ask them. If you have words of encouragement, I would love to hear them. If you have judgments to pass, remember that if you don’t have anything nice to say, you shouldn’t say anything at all. I don’t need any more bullies.

Hope to here from you soon,

Be kind,

Ella

Song that’s stuck in my head and magically goes really well with what I’ve written:

“Believe I’ve got high hopes… But the world keeps spinning around.” ~High Hopes, Kodaline