Remember the Truth

Isn’t it crazy that you write the truth and then forget how it feels? You believe in looking at things as beautiful, but you simply don’t remember to. Because bad monsters clout everything, because you can’t remember what it’s like to feel like yourself, because sadness is so overwhelming while happiness is so fleeting.

But yes. For the first time in forever, you feel like you’re going to be okay. And for even just a few days, you felt good. You existed under a new sky, you rediscovered what it is to hope, you felt optimistic about new opportunities and you felt worthy of love. You also believed in it.

A new sky... (Taken in Baveno, Italy, this summer)

A new sky…
(Taken in Baveno, Italy, this summer)

So relax. Take a deep breath. Tell your brain that everything is going to be okay. Sleep well. Dream happy.

Just live. Isn’t it beautiful seeing the magic?

Ella

Song Quote:

I just want to be ok today. –Be OK, Ingrid Michaelson

(The third in an unintentional trilogy… Some Truths, Actual Truth, Remember the Truth.)

A Conversation

Wake up, Ella. You’re letting life pass you by. Remember when you said you wouldn’t do that? You wouldn’t lose sight of the bigger picture?

Gone is the confidence. Gone is the positivity. Gone is the girl that believes she can weather anything with a good attitude. 

Remember when you wrote about the little things? You should really figure out how to find those again. 

Instead is a common foe: pain. 

I know it’s hard, sweetie. But you used to see magic everywhere… I bet you there’s still magic.

Pain is led on a high horse to a royal throne, where he presides with a mighty hand and a nasty manner. 

Can you remember the last time you were truly happy?

His land is Headache Kingdom, and his name: Sir Hurts-A-Lot.

You know what, don’t think about past happiness. Think about the future. How are you going to find a way to be happy?

Live obediently under his rule or risk his wrath.

~~~

Ella

Song Quote:

For diamonds do appear to be just like broken glass to me. -Northern Downpour, Panic At The Disco

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

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!