Some Truths

I have this fear that my life is a story. 

I worry I will one day faint down the stairs. 

When my body crashes and I feel worse, my body self esteem dips. 

I’m good at being the bigger person when someone else can’t be. 

I’m always the one to speak. I’m not sure I like that. 

I can’t think of any deep, dark secrets I have. 

Sometimes I sip water as though my life depends on finishing the bottle. I wish it could be my salvation. 

I think that as a child I suppressed my jealous streak, but it’s still in there somewhere. Maybe that’s my deep, dark secret. 

I miss not knowing about the horrible things that happen in the world. 

Just some truths today. What are yours?

Ella

Song Quote:

Sometimes I think that I think too much. – Hold You, Nina Nesbitt

The Hospital Anecdote

I never wanted to end up in the hospital. I never wanted to get sick in the first place.

I’m so exhausted. Yesterday was a nightmare, and I wish I could erase it from my memory.

But I keep thinking of two things: the song that played in my head while I listened to other people moan and cry out in pain, and the hair cut I’ve been dreaming of for years.

“All I need’s a whisper in a world that only shouts.” Poignant as it is, I’ve related to it since I heard it for the very first time. But after everything I went through yesterday, it was the soundtrack and is still at the forefront of my mind. I don’t deserve what has happened to me. I am a good person, and this is awful stuff. The pain I suffer through is not fair, and yesterday was a bad dream that really happened.

I’m getting a pixie cut. This is so unrelated, but lying in bed today, all day, I keep thinking about it. How free I’ll feel, how cute it’ll look and how I can’t wait to release the weight of all of this long hair. I never realized what a burden it was until I decided to cut it off.

This haircut is now linked, hand in hand, with graduation. I naturally create things to look forward when I’m staring at a bleak stretch of time. I’m about to finish high school and I have no clue what my life will look like. The fear threatens to cripple me every day. Because here, look what happened! I have three weeks left to the year and it was so important to me to feel like I’m not missing out on anything, so I pushed myself beyond my limit and yesterday happened.

Yesterday.

Isn’t it fun when you end up in the hospital? When the dramatics went down in school and they carried you through the building on a gurney to the ambulance?

My own voice is echoing in my mind. “Why are you being so mean?” I tried to yell at the paramedics. They were hurting me, but I could barely talk. I don’t know if I screamed it or not.

Isn’t it funny that I just turned eighteen? At eighteen and three days I wasn’t allowed to go to the children’s hospital and had to go through the regular emergency room. I spent seven hours hearing awful sounds and seeing awful sights. All I need is a whisper.

From the worse pain to the shaking hands, from the tightening sensations to the embarrassment, from the worry and fear to the panic. From the mob of spectators to the scary paramedics, from the rough yanking and dragging to the collapsing, from the stairs to the chair and the chair to the gurney. From the sirens and the movement to the bed-to-bed, from the ugly curtains and needles and sleepy eyes to the waiting and waiting and waiting. The sounds of suffering, the yelp of the in pain. Curtains don’t block sound. The man who yelled that the nurses don’t care if his wife dies. The man was removed by security. I cried and cried – the woman was alone now. I want to go home. The world only shouts.

Erase. Erase. Erase. Delete. Backspace.

Now I should think of a way to look at this differently. I shouldn’t be angry at the world; I should appreciate what didn’t go wrong.

My friends were amazing. They acted quickly, and well. They love me. It upsets me that they saw me like that. They love me. My family loves me. Yesterday proved how beautiful my support system is. I have people, and I am so grateful for this.

What my body did to me yesterday was a reminder that I’m not superwoman. I can’t do it all. It might not be fair, and it might upset me very much, but I just can’t do everything I want to. I need to take care of myself, slow down, be more careful and go back to living life in small doses. If I could choose a super power, it would be healing. To be able to look at someone who is suffering and heal them. I saw so much pain yesterday.

These last few tests are going to be a struggle, but I will manage them and I will graduate. The next few days will be spent in bed, but after that I will pick myself up. I will get a pixie cut and then I will feel free and adult and optimistic about my future. It will mark this transition in my life, and it will be a sign that I can control what happens to me and how I deal with it all.

Ella.

Song Quote:

Well it’s hard to find a reason, when all you have is doubts, Hard to see inside yourself when you can’t see your way out, Hard to find an answer when the questions won’t come out. Everyone’s filling me up with noise; I don’t know what they’re talking about. You see all I need’s a whisper, in a world that only shouts. –Whispers, Passenger

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 18th 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

Where I Belong

The wildest thing about time is that I see it coming.

I dream of having my own apartment someday, decorated corner to corner by me, myself and I. I see it as a cozy, homely place where amazing things will happen. It will be a home not only to me but to my friends, who will probably like it way more than wherever they’re living.

It’ll be my little spot in the world.

My music will be my soundtrack.

I won’t own two of the same mug. I don’t do that set thing. Every mug will have a story.

I’ll have really cool coffee table books.

Pillows and blankets will be in abundance, heaped in corners next to piles of books and collecting a musky smell that I will come to love.

It’ll be marvelous.

Love,

Ella

Song Quote:

When my heart is ready to burst, when the world spins in reverse, I’ll keep running to the place where I belong. –Running, James Bay

Oh, and fairy lights! I’ll have fairy lights!

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

A Cry Guide: For Your Pleasure

So you need a cry party?

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

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

Pretty tissues are advised

Pretty tissues are advised

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

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

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

Until we cry again,

Ella

Song Quote:

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

Teardrops on the Stairs

I left a path of teardrops on the stairs today. I think I’m going crazy. I walked in a circle, sat in a circle, turned in a circle.

I cried today. I cried because I needed to scream. In the rare few hours with the house to myself I wandered around and trailed tears behind me. I cried on the floor. I cried on a chair. Tears and tears and tears and tears.

Today I let myself feel the self-pity and fall apart. I let myself cry and cry and cry.

My body is rocking. Rocking back and forth as my brain tries to cope with the pain it’s sending, so distraught over causing its own demise. I blame you, brain.

I cried because I’m angry. I’ve lost so much in my life because of this and I feel my future slipping through my fingers. The decisions, the important and meaningful decisions, are being made not by me but by my illness, whose existence I’ve been bearing upon myself, by myself, for the last four years.

I wish I could end this on some uplifting note of how I carry myself gracefully and nobly through the pain, but I cannot. Today I bowed beneath the pain, I broke. The task is to build myself up again, but I can’t locate the part in me that knows how to do that. Maybe it broke.

Today I left a trail of tears on the stairs, and I can’t find a tissue to clean it up. I fear someone else will slip as I have.

Ella.

Song Quote:

You’ve been crying out for forever, but forever’s come and gone. -When You Break, Bear’s Den