I Hate Everything – A Tale of Optimism

For quite a while now my first thought every single morning has been, “I hate everything”. Well, to be fair, it’s usually a word that starts with “F”. Or “S”. But the second thought has been, “I hate everything.” It’s like the soundtrack to my life. *

Why? Because I’ve been in immense pain. But why have I been in immense pain? Because I’m busy. And that’s why it’s a phrase of optimism.

You’ve known me for a very long time – remember when I turned 16 and started freaking out about growing old and being sick? – and you know I’m big on self-reflection. I’m astounded when I think about how much I’ve grown in the past seven months, on so many fronts. Besides all kinds of official things – being upgraded to an adult credit card (not below 18 anymore), having no more age-related driving restrictions, having control over my own medical everything – there are the things that are less obvious.

I’m not here to list all those things. Normally that would be a classic post, but today I’m content with just the knowledge that I have grown. Today, I’d like to talk about the fact that I’m busy (and therefore I hate everything).

Since September I’ve been volunteering with a certain charity, and in the past few months I’ve had to make a decision: either find another place to volunteer for a year, or go on to university. I took the higher education entrance exam (psychometric test) and got a high enough grade to enter the excellence program and receive a 50% scholarship (!) at my school of choice. Attending the course, preparing for the exam and still working (i.e. volunteering) three days a week took a lot out of me, but the success felt amazing. So that covered the technical aspect of university for me, but I was left with the question: am I ready?

I’ve never told you where I live, what my real name is or what my religion is, and you’ve never seen a picture of me. You know no truly identifying factors (which I’m sure has driven some of you crazy). I have my reasons for this, but the reason I love the most is that this blog is the opposite of real life. In the real world, the first things you (usually) know about a person are what they look like, the part of the world they live in, their name and maybe their religion. It takes longer to learn about their personalities and their feelings, if you ever do. In this world, our world, the only things you know about me are my personality and my feelings.

Which is why I’m still not telling you anything, including where I’m volunteering or what country I live in. I wrote all of this simply to explain that in my country, it’s not weird that I’m not starting university at 18. In fact, even if I go when I’m 20, I’ll still be on the younger end of the scale. Generally speaking, I’m much older than my age suggests, so I’m not worried about fitting in socially with an older crowd, but I am worried about my feelings. I’m so separate from my contemporaries as it is, and if I jump shoot choosing a profession, studying and starting a career I fear I’ll feel galaxies away from everyone.

It has come down to the fact that I have doubts. I’ve decided that the fact that I doubt I’m ready to start is enough to decide I’m not ready. I’m not the sort to waste my time and I take things very seriously, so I’m not going to start until every aspect feels right.

Which leaves me with finding another place to invest my heart for a year. I’ve been busy because I’m following leads and putting myself out there, all the while keeping up my regular work schedule. Sprinkle in tutoring, physical therapy, exercise, doctor appointments, additional work events and the occasional (*gasp*) attempt at fun, I am exhausted.  

So my brain is occupied with hating everything the majority of the time because I constantly feel like I’m dragging my body around and running myself into the ground (please note that I’m still taking care of myself – I haven’t aborted the mission of health just yet). When the thought first started popping into my brain I was kind of amused – it is kind of a funny way for my mind to have phrased my displeasure – but I recognize that it’s a sign of me being proactive with my own happiness.

I am my own person, and I am making the decisions that are right for me. I’m not just sitting here, feeling miserable, and hoping I do something worthwhile with my time. I’m already doing it. I’m being smart about my life. I’m building my path from scratch and turning it into something I can be proud of. Even if I don’t always realize it, I know that every step I’ve been taking recently has been an offspring of a superpower: optimism. Somehow I’ve been operating under the assumption that I have the ability to make everything work out.

And that, ladies and gentlemen, is why hating everything means I am a true optimist. Farewell.

~~~

Ella

Song Quote:

We’re on the right side of rock bottom. –Rock Bottom, Hailee Steinfeld

*I literally push myself up into a seated position on my bed and think, “I hate everything.” Then I go to the bathroom and think, “I hate everything.” As I’m getting dressed, I’m thinking, “I. Hate. Everything.” When I find my way to the kitchen and start making breakfast, I’m just a broken record of, “I hate everything”. It’s quite the life I lead, my friends.

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.

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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!

Believing in Bloom

Sometimes I just feel it’s only me.

According to my brain and heart, there is Truth, Magic and Bloom.

Truth is personal. It belongs to each of us and to none of us. Whatever my Truth is, it’s legitimate, and whatever yours is, it is too. I try to see and understand each person’s Truth in the way that they do. You can’t deny the validity of somebody else’s world.

Magic is something I can’t seem to pin down… Magic is fleeting moments of pure joy, along with moments of awe and appreciation for everything that this incredible world holds. Magic is seeing the bigger picture and knowing it’s the little things. Magic is… hope. It is not something I control, but it’s something I’m learning to preserve in order to survive. To survive in the hopes I will reach:

Bloom.

Bloom is something I will only truly be able to achieve once I am better. Once I am healthy. Once I am free: released from this prison that coils bars around my bones and marches jail keepers around my core. You know my pain and you know my frustration – I feel no closer to health than I have any of the multiple times I’ve cried to you in writing about how hopeless I am.

Therefore, Bloom feels like an abstract concept that I run the risk of never really understanding. I’m not sure I believe in Bloom. Will it all just pass me by? It’s scary to think about it, because what if I find nothing but disappointment? What if I never get to Bloom?

~~~

Still I wonder. So I take a step back and evaluate my life. What I’ve done thus far with the circumstances I have been given makes me proud. I can declare, with my whole heart, that I am doing well. As always, “still so many ups and downs”, but I don’t take for granted all that I have been managing. When I compare now to this time last year… I know so much more than I did then. I just don’t know enough about Bloom. I’d like to believe it will happen naturally. Must sustain myself until then.

~~~

According to my brain and heart:

Bloom is what my Truth will be once Magic decides to come and stay.

~~~

Ella.

Song Quote:

I wish I could live a little more, look up to the sky not just the floor, I feel like my life is passing by and all I can do is watch and cry… I miss it when life was a party to be thrown, but that was a million years ago. -Million Years Ago, Adele

(I think everyone must relate to this song so differently… the first time I heard it I cried because I felt it perfectly summed up how I feel about being sick. Now when I cry I think to myself “My life is passing by and all I can is watch and cry”.)

~~~

P.s. This post is loaded with references to earlier pieces I’ve written and posted on this blog since I created it nearly three years ago. Did you catch them?

Goody Goody

Change is change and takes adjustment, but I think I’m getting the hang of it. Things are picking up, settling in, taking off. It just feels like everything has fallen into place. True to myself I know how to recognize when things are good, and right now, things are good. And I love the weather.

The pain is still here but I’m taking care of myself. The sadness is still here, but there’s satisfaction to combat it. The loneliness is still here, but it has less of a sting to it.

I feel happy again. I feel like I have more good moments than bad moments. I’m crying less. I’m doing more. I’m watching a lot of Gilmore Girls. I’m busy again. I’m seeing my friends more. Or rather, enjoying the time I spend with my friends more than before. I feel like I have what to say, I have what to share, and I have what to be proud of again. I’m interesting and complex and funny and lively. Again.

I wish I could sleep. I mean, it would be helpful, you know? But you can’t have everything. I like that even when it takes me hours to fall asleep, I don’t talk myself into a frenzy. I write stories in my mind like I used to when I was little.

I feel curiosity for the first time in a long time. Being out of school has reminded me that I love learning and I love knowledge, and it’s a joy that is precious. I like surveying the months since graduation in my mind and realizing I’m now out of the dip. I like my clothing and I like how I look. I like that I’m good at staying in touch with people. I like that I persevere. I like that my diary hasn’t been as depressing these past couple weeks.

I like that I’m starting a course soon where I’ll meet new people and make new friends. Winter romance? A possibility.

On that note,

Ella

Song Quote:

Little darling, the smiles returning to the faces. -Here Comes the Sun, The Beatles

At this point I refer you back to “An Ode to the Changing of the Clocks”, because it is once again how I feel and I’ve been pining to feel this way for months.

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

Describe the Pain

You ask me how it feels.

How it feels?

Describe the pain.

The pain?

That I can’t.

~~~

It is a thin, gray substance that coats my entire body. It is elastic – it clings to every fold, crevice, dip and bulge. It is a glove, not a mitten, covering each of my fingers individually. It is a film around my eyeballs. It’s a thick platform beneath the soles of my feet. It is weaved within the hair that I chopped off. It is my outer layer of skin.

It is like a rubber band. If I focus, really hard, I can push it out – away from me – enough to let air in. If I push it really far, it lets hope in. But you must understand what being rubber means: it will always snap back. The minute you forget to focus on the light and hope, it smacks back, vacuuming itself to your body.

You can see through it, in the way that others don’t see it at all. You can see what you’re missing, but there isn’t a thing you can do about it. It is like walking with a heavy cloud above your head every day, except the cloud is not above you but within you.

It is as strong as I am. The harder I fight to be rid of it, the harder it fights to stay with me. Because it is me. It’s my brain, it’s my wiring, and it’s my nerves. It has my nerve.

~~~

Ella

Song Quote:

We’re tethered to the story we must tell. -Turning Page, Sleeping At Last

Actual Truth

Dear Abandoned Blog,

It’s not that I don’t love you anymore. Sometimes I just feel I’ve said all there is to say. The picture of my life has not yet evolved; I am still sick and I am still sick of it (more and more each day). Countless times I have moved beyond the moments of thinking I can’t take it anymore.

This summer marks four years since my headaches started and three years since diagnosis. What have I learned in all this time? Many things, that’s for sure, but none that make me feel like it’s been worth it.

It’s hard to be in pain all the time. As I once wrote, “My friends wonder how I do it, and I wonder why.” I often find myself in this numb state, where my anger is equal to my pain level and as the two compete I turn into a sort of zombie. I care so much that I just can’t care anymore, because caring doesn’t get me anywhere.

A problem shared is a problem cut in two, but I can’t share this pain because it is mine alone to bear. I’m by myself with it, feeling it day in and day out. I barely sleep anymore. I spend hours every night staring at the ceiling, blinking away tears, because the pain is so bad and there’s nothing I can do but survive it. All I want is for someone to hold me and make the pain go away.

Dear blog of mine, please don’t feel hurt. As you can see, I’ve been dealing with a lot. I’m very unhappy.

Since I last wrote to you, I graduated. I was in charge of graduation, and for three months I put my heart and soul into planning a beautiful evening. It took a lot out of me. I didn’t cry until after I got my diploma and walked offstage. It was a moment of relief, realizing it all went off without a hitch and I had no more responsibilities, but also a moment of great, deep sadness. I’m never going to get those years back.

I’ve been sick for so long, and the past four months have pretty much been the worst I’ve ever had physically. I told myself it was the pressure. It was the stress of graduation work, tests, social events, etc. But it’s been a month since I graduated, and I’m not doing very well. I’m in a pain spiral and it’s dreadful.

Please understand, dear blog, that it is not about you. It’s about me.

I love you,

Ella

Song Quote:

The tears come streaming down your face when you lose something you can’t replace. –Fix You, Coldplay

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

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