The Year of the Extreme – 18

My dad always says that the best way to live your life is by being where you are.

I’m very good at being where I am and feeling everything to the fullest, for better or for worse. Today is my 18^th birthday. Looking back on 17, I see it as the year of the extreme.

When I was happy, I was really happy, but when I was hopeless, I was really hopeless. So it went with every emotion, from anxiety and sadness to excitement and love. There were times when I felt like I loved my friends so much I would burst, but others when I felt like my struggles were all for naught and I have no future. I felt everything so strongly, and though it’s part of what makes me who I am, it doesn’t lead to the most stable way of life. This year has been exhausting. Maybe it has to do with age or maybe with my personality, but I hope that in the coming year I’ll be able to maintain a steady, positive outlook.

I am a happy and optimistic person, stuck in a situation that often leads me to lose sight of all the good. There is a constant war inside of me, trying to lift myself, suspend myself, and run far, far away from the pain.

There are two things I’ve learned from a person I appreciate very much:

• Every time I feel pain, of any kind, it only makes me more human. With every new experience of hardship there are many more people whose difficulties I can relate to and to whom my understanding can extend.

• The moments in life of intense emotion are beautiful. Never before had I looked at my breaking points as beautiful, but this statement of sorts fits perfectly into how I view the world and manage my way through it: we can’t control what happens to us, but we can control how we look and approach it. I now suddenly find myself sobbing in anguish in my bed and thinking, “This is beautiful. These feelings are beautiful.”

I am eternally grateful to this person.

There’s this exercise where you imagine all of your thoughts as cars on a highway in front of you and you need to try to stay calm and just watch them as they pass by, without feeling like you’re in the traffic yourself. You are an observer of your own thoughts, and you don’t need to find yourself in chaotic, honking danger of being caught in the way of the cars. This year I definitely found myself precariously jaywalking.

The truth is that from every time I’ve reached rock bottom, I’ve risen with newfound insight and maturity. I’ve known for a long time that happiness is not a state that you achieve, but rather something you need to learn how to glimpse when you pass it by. If you don’t notice it, appreciate it and cherish it, you will never feel like you’ve found it. There were moments this year when I was happy. Albeit greatly overshadowed by pain, fear and anger, I will not let myself view this year as one devoid of happiness.

This year holds the record for fewest moments of hating myself. I genuinely like who I am, and in my better moments, I can see myself succeeding in my life. My parents raised me to acknowledge my strengths, and so I do. My strengths are my weaknesses, and vice versa, but I’ve made my peace with that. I am a wonderful person, if only because of how hard I try to be so, and it feels really good to say that.

I don’t know what’s going to happen to me. I can’t view myself in two months, and definitely not in two, ten or twenty years, but I have a few wishes.

I hope I never forget to remember that people are large and we contain multitudes (Walt Whitman’s “Song of Myself”, section 51). I will live my life with an open mind, open eyes and an open heart. I will always try to see people and accept them for all that they are. If there is one thing that really gets to me, it’s when people judge others and don’t give them the benefit of the doubt. Every single one of us has feelings, memories, and a story of their own, and that is never to be belittled.

“I want to encourage you to be vigilant in the struggle towards empathy… You will have a choice about how to read the actions and intonations of the people you meet. I would encourage you as often as possible to consider… the possibility that the lives and experiences of others are as complex and unpredictable as your own. That other people… are not simply one thing or the other – not simply good or evil or wise or ignorant… You will always be stuck inside of your own body, with your own consciousness, seeing the world through your own eyes, but the gift and the challenge… is to see other as they see themselves, to grapple meaningfully with this cruel and crazy and beautiful world in all of its baffling complexity.” –John Green, commencement speech 2013

I hope my relationships grow stronger and more meaningful every day. I hope I keep trying even harder to be a good person. I hope I don’t lose sight of how much I love life. I hope I fall in love (she puts in the middle of the paragraph to feel less silly for writing it). I hope I keep writing, because it brings me joy and pride. I hope I retain my enthusiasm for everything I love. I hope time will do its job and freaking cure me already. I hope I never let my difficulties cloud my vision. The vision is everything.

Nothing is ever ideal, but the love I’ve been receiving today fills me with warm and fuzzy feelings. Kind words pouring in from everyone that matters to me makes it all seem worth it.

Here’s to being 18.

Love,

Ella

Song Quote:

The backs of my eyes hum with all of the things I’ve never done. –Welcome Home, Radical Face

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The Interview Anecdote

Don’t let your cheek twitch. Yes, yes, I know it wants to, but don’t let it.

This is exciting! You might be setting foot on the campus of your future for the first time! In fact, the campus doesn’t look all that pretty… and the guys here look kind of weird, not handsome like you imagined… but that’s okay, this is still cool. This is still exciting!

Room 112, that’s where the magic will happen. If only we could find it. Around and around and around… I swear I’ve been down this corridor. Front desk, we meet again. Didn’t you hear? They changed the rooms. 112 doesn’t exist, it’s a typo.

Down the hall, hall down the, the hall down. Here we are!

Why thank you, I am welcome.

Is it just me or is this chair built weirdly? How do I exude leisure and confidence while in a chair that awkwardly leans backwards? I don’t know.

Maybe I should have realized that I would need to speak, need to tell them why I’m interested in joining this lovely and competitive school, but I didn’t. At least someone spoke before me.

The man was nice and he seemed to like my answer. Good job! You’re doing so well!

I will let you tell me a little bit about the course.

It’s fancy, yes, that’s why I’m here.

It’s revered, yes, that’s why I’m here.

It’s creative, interesting, professional, yes, yes, yes, that’s why I’m here.

It’s night courses.

Don’t let your cheek twitch. Don’t let the nice man see your face fall. Don’t let yourself acknowledge the disappointment coursing through your insufficient veins. Don’t let this inefficacy affect you. Don’t let your body’s inefficiency be a character in this conversation.

Don’t let your cheek twitch. And whatever you do, goddamit, don’t you dare cry. Tears are beneath your pain right now.

What? Oh, no, I don’t have any questions. Actually, just one: do you offer any daytime courses?

Oh.

Have you heard of any places that do?

Oh.

No, thank you, it was great meeting you.

You wish me health.

I wish me health too.

Cause wouldn’t health just be a great thing? Wouldn’t it just solve this all right here, right now? Wouldn’t it save me this pain, quite literally? Wouldn’t it spare me this turmoil of watching my independence quiver into a mere dream, of watching everything that excites me be cut down and vaporized, barred from me because I just can’t freaking do it?

It would. But it won’t. Because health is nothing but a rumor around here. My body believes it to be a fantasy, in fact. You should never hope to chase a fantasy, it tells me. Because this body of mine, it hates me. I’m looking down on it now, in fact, using it to type these words, but it’s using me, too. Using me to make me miserable. What it gains? I’m not sure.

I won’t be going there next year. I won’t be going anywhere. I will remain exactly where I am, writing about being sick and totally sick of it, treading water, paddling backwards and discovering that all my hopes are in the muddy puddle I keep treading in over, and over, and over.

Game over. Wave your dreams goodbye as they pass you in the car you could drive if you had anywhere to go.

The people around say: “It’s okay, there will be other courses. Something with daytime hours, something you can do.” The people in me say: “Believe them. Please, please, believe them! If you don’t, what will we do?”

I say: “Give me a chance to live my life for once. Give me my choices back. Give me freedom. Give me an interview I can be happy about.”

But whatever you do, in this life, don’t let your cheek twitch.

Ella.

Song Quote:

I have tried but I don’t fit into this box I’m living with. –The Box, Damien Rice

The Question Is Scars

The question is scars, imprints, and things that last. Sure, life moves on, and our past is behind us, but there is no escape from what has happened to us. Experiences will live with us forever, because I believe e-v-e-r-y-thing makes an impact, no matter the size, on who we become. Which is why no one event is the sole cause of something. There were many things that led to it.

I’ve been thinking about this because of the possibility that I might get better. I’m sick, and as the title will tell you, sick of it. But I might get better, so I try to focus on that. Whenever I think of my future, when I imagine my grown-up self, when I dream up a family, I’m always healthy. I never let myself think about what life would be like if I don’t get better very soon. I don’t let myself think of when I finish high school, how I’ll never be able to date if I’m sick, or how I’ll dance at my wedding with this body of mine, or how I won’t be able to sit on the floor with my kids, or how I won’t be able to show them how to do cartwheels, or….

Whoops.

But really, even if I do get better (/when), will this disease ever really leave me? What scars have my life cut into my heart, that will debilitate me for eternity? Wow, dramatic sentence. Every phase of my life has left me with scars, and has helped shape who I am. But where is the balance, between the scars shaping us, and our personalities shaping us? And really, is there that much of a difference?

I don’t think so. I believe that our scars are what make us who we are. But the same event, happening to two different people, will cause different scars, and ultimately, a different outcome.

I was bullied, starting from age seven, and because of that (and many other things), I take special care to never hurt anyone’s feelings (because Anyone has an almighty power and if I insult him he’ll kill me). I look out for those who have trouble doing it themselves, and most importantly, I’ve learnt how to take care of myself so I don’t get hurt again. But others who have been in my position have turned to bullying others in return. What does that mean? I don’t know.

That’s why I’ve been wondering, and why I’m writing it down. I feel like I’ve thought this through about 90% of the way, and those ten percent are what is really important and what I haven’t gotten to yet. Writing things down usually helps me figure everything out, but not this time, I guess.

Maybe it just needs more time. It’s not like my scars are ever going to leave me. They stay.

From now on, don’t abandon your scars. The would never abandon you.

Yours truly,

Ella

Song quote:

You’re still written in the scars on my heart. -Just Give Me A Reason, Pink ft. Nate Ruess

The Little Things

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.

I Am Effervescent

Every now and then, despite everything that is going on and all of the hardships, I have these moments where my thinking becomes big. By big, I mean I think beyond whatever is going on in that moment. I think about how incredible society is, even the fact that it exists. I think about what the point of life is, why we’re here. I think about the little things of life that I love more than anything. But most of all, during my big thoughts moments, I think about the positive of my world.

 

I have an internal list of the nicest things people have said about/to me. My mother told me the other day that “to know you is to love you”. A family friend told my mom that when she thinks of me she “thinks effervescent”. My father tells me that “your kids are going to be so fortunate to have you as a mother”. All of these things, that take people seconds to say, stick with me, forever. For the better and for the worse. But with my mood right now, it’s for the better.  I love it when I feel like this.

 

My friend has this huge jar sitting on her desk. Every day, she writes down something nice that happened to her and puts it in the jar. As opposed to me, where every night, as I try to fall asleep, every bad aspect of my day comes to haunt me.

 

I feel like every person is born half blind. We have to spend our entire lives training ourselves to use the other half available to us. We need to learn how to see the little things that are so incredible, I can’t even write them down. You’ll have to feel them for yourself. When you do, suddenly everything around you will have this sort of… buffer. This buffer lets me be in a good mood even though I’m having a hard day physically. This buffer is letting me write even though I want to lie in bed. This buffer is… the other half.

 

Moods go up and down, but buffers don’t. Find yours.

 

Good luck,

Ella

 

Song quote: (You’ll get two today! The words always meld together for me, and these two compete each other)

 

“It’s harder than you think, to delay this sadness that creeps up my spine, and haunts me through the night”- These Streets, Paolo Nutini

 

“How am I gonna be an optimist about this?”- Pompeii, Bastille

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