Beach Happiness

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

 

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

 

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

IMG_1896

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Love,

Ella

 

Song Quote:

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

 

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

I Wonder

Please give me a pass for sounding incredibly pathetic right now, but I have a mental catalog of really great hugs I’ve received. I suddenly thought of someone I haven’t seen in about a year who gave me a great hug the last time we saw each other. It was a lingering hand hug – you know, the kind where the hug is officially over but neither removes their hands quickly. It occurred to me that I might have written in my journal about that hug, so I started digging through my drawers and retrieving old diaries.

As I was looking through them, page by page, I was struck by how much I have changed and how little my life has. The entries from last year could be the ones from yesterday, and the ones from two years ago could be the ones I’ll write tomorrow. I write with more finesse, maybe, or a slight twang of additional maturity, but I’m still dealing with the same difficulties. No matter how I change, advance, grow or learn, I can’t get away from this pervasive problem of my life.

I never imagined I would graduate high school and be sick. I’ve accepted a lot and have a lot of accepting left to do, but nothing can alter the fact that I’m greatly displeased with what is happening in my life. The things I’ve been writing here for over two years, about how little control I have over what happens to me and how useless hopes seem to be, are as relevant as they’ve ever been.

Now don’t get me a wrong, I’m a pro at making the best of whatever situation I find myself in. I believe in seeing and appreciating the good as I live, and remind myself every day how important it is not to see good only in retrospect. Not to look back on a time in my life and see some good aspect of it that I didn’t realize was there at the time. So as I suffer and smile through it I make lists in my mind of everything that is good, and this helps me. Helps me some, but not quite enough. Not enough to cover the sadness.

The sadness. It runs deep, maybe through my veins or my nerves, maybe in my heart or in my soul. I prefer to be alone with it, to retreat at times and allow myself to feel it as it courses, because I have a lot to cry for. I have a lot to be thankful for, but also a lot to cry for. The pain is a constant that seems to stem from my very core and that makes no sense, but the sadness I understand from the inside out. It’s there in the silence and it resonates in music, it thrums in my ears as I walk and buzzes in front of my eyes as I sleep. It’s a part of me, an integral component in my days. I live with it and it lives in me. But I no longer wonder why.

I try to remember that maybe the fact that I can’t imagine my future means it is destined to be better than anything I ever could imagine. I read my diaries and see the process of becoming who I am right now, a person I genuinely like. I can’t put my finger on just when it happened, but I have become an adult. I think practically and reasonably about decisions in my life, and I spend so much of my time now thinking of what I’d like to do with it. What do I want to study? What shall my profession be? Where do I want to live? (How will I afford that?) Which is the ladder I would like to climb?

It’s a quick step to the spiral of anxiety, realizing no matter how I plan I cannot conquer this disease and cannot live to my fullest potential. I harbored a secret hope that after finishing high school I would start to feel better and that I’d slowly but surely rise out of the pain. But alas, I’m just as sick as I was before, and I need to start figuring out how to manage adulthood in my current state. This point in my life is about proving that even if I am sick, I can still be okay.

I remember my childhood so vividly. I remember crying and thinking that good tears should not go to waste, trying to find a parent in the house and show them my state to receive some extra hugs. The real world doesn’t dole out any extra hugs when I suffer. I no longer wonder why.

I am still, in my essence, happy. But I am still, in my reality, sad. I mourn for the things I cannot have, cannot do and cannot be. I mourn.

There’s doubt. Isn’t there always? I doubt that I will ever get better. I doubt that I will live to see a time of peace in the world. I doubt that… that…

Well, this leads us to a sore spot. I know I’m lovable, okay? I know that. It’s not one of the things I doubt. It’s just something that has yet to be proven. I feel so silly for writing this, but in a way I feel it should be recorded just the same as all my other feelings.

No one has taken an interest. I’m the last of my friends… I’ve never been asked out, never been kissed, never been the object of someone’s crush. And I know my time will come, that I just haven’t met the right person yet, and that we each have our own timelines. But it makes me wonder. I wonder: why hasn’t anyone taken an interest?

When will it be my time? My time to be healthy, my time to be loved, my time to be free…

I wonder and will continue to wonder, but one thing can be said for sure, and that is that time doesn’t stop. In this moment I am older than I have ever been before and the youngest I will ever be again, and that in itself is a beautiful thing. Maybe life won’t disappoint me.

I know we’ll be fine when we learn to love the ride.

Love,

Ella

Song Quote:

If I fell in love a thousand times, would it all make sense? –Sense, Tom Odell

The Endless Ands

And what about those nights when I don’t want to get up the next morning? When giving up is the easier option, because really, who would love me like this anyway?

And as I write these words I wait for the fight to kick in, for the anger to strike me and tell me not to believe that. But I wait like I wait for health: hopelessly.

And what if I’m tired of waiting?

And as I contemplate the bed I am getting into, I wonder about the bed I will wake up to. Will it have been slept in? Will I have spent another open-eyed night wishing the sun would rise more quickly and yet not rise at all?

And I have two arms. One I wrap around my body, tightly, because there is no one next to me to do it. One I keep free to wipe tears. The pain is too much.

And the fear is crippling. When health is but a fantasy, the future is but a question mark.

And I want to be hopeful. Sometimes it feels like I am winning, because I have a voice in my mind that tells me that right now is not really all that bad. Manageable. Definitely not the worst I’ve had. Perspective. You know the sort.

But there’s always a tonight, and I don’t want to get up in the morning.

~~~

Ella

Song Quote:

I got locked inside a sadness, I got lost inside my head, couldn’t find a light to make me glow. -Holes, Layla

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

Proportional Pain and My Guilty Genes

IMG_3094

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?!