Mint.

A ray of sunlight will always find its way through my metal slab shutters in the morning. The front door swings open of its own accord if it isn’t locked. There’s a little girl in my building named Ella – she’s always being called outside to play. My stove only responds if you touch it very softly. My windows don’t reopen if you close them. My bed’s too big for one person – I need another person to make it feel right.

This is home. It’s been three weeks, but it may as well have been a lifetime. I’m on my own now.

There’s a guy, who will forever be known as “The One Who Was Nice To Me On My First Day”. I hope he knows that he’s infamous in my book now. He started a conversation as I sat awkward and out of place, and invited me to a movie with a bunch of people. I didn’t know their names until I got there. Until the movie was over.

There’s another guy, who will forever be known as “The One Who I Flirted With And Who Flirted With Me.” He was sweet, and thoughtful, and warmed my hands when they were ice cold. We were surrounded by people the entire night – his people and apparently now mine too. He didn’t seem to care. He cared about my story and what I’ve been through, without knowing who I am. We laughed, and joked, and he made my face all warm and my heart expand. I felt something, maybe for the first time ever. I could see it.

He walked me home, even though it was out of his way. He told me about himself and I won’t share much, lest someone put two and two together. But he made himself vulnerable – more vulnerable than I would have thought him capable of after only a few hours. My apartment came around too soon. It was late, but the entrance to my building was swarming with people. We hugged. We pulled apart. Or rather, I thought we were pulling apart but he was pulling me in for more than a hug. I didn’t realize. He got my cheek.

I was flustered. I should have expected it – I was hoping for it the whole night – but it took me by surprise. I felt uncomfortable surrounded by all those people, the children, everyone watching us. I quietly said, sweetly I hope, “Not in front of the kids.” He smiled, I think. I’m not sure. We hugged again, and held hands as I parted for the building. I couldn’t sleep, running the whole thing through my mind and wondering how I could have made things end differently. I couldn’t sleep, thinking of the next time I would see him.

I saw him today. I don’t think I imagined the whole thing, but today… it didn’t seem like we had the same experience that night at all. He hugged everyone around me, but barely said hello to me. I wouldn’t care, except that when I saw him walk through the door I felt like my insides were struggling to escape. I’ve never felt that before. I watched as he made his rounds, and waited for him to reach me, suspended by the suspense of not knowing how he would greet me. But I don’t think I imagined the whole thing, so now I’m left with… Did he misinterpret my response that night? Did he feel rejected (like I do now)? He has no way of knowing what I’ve been thinking ever since then. How I’ve been thinking of him.

My new job is strange. I’m not sure how to find my place in an environment that’s so dynamic, but I’m taking it as it comes. Ask me one day and the place is amazing – the people, the cause, the projects – it’s phenomenal! Ask me the next and the place is confusing and I am out of my element. 

We’re five roommates, but three are subletting to other girls, so in the span of less than 20 days I’ve had 7 roommates.

There was a while when fibro was a non-issue. It’s an issue again, but I refuse to accept that.

I joined a gym. They’re requiring me to bring a doctor’s note that it isn’t dangerous for me or other people to join classes.

One night I sat on my porch in the dark and watched a show on my laptop. One character proposed to the other, and I burst out crying. It was just too much.

There is not a single person around me who has known me for longer than three weeks.

The light switch closest to my front door controls the light furthest from it. My fridge has a “pour water” option, but the spout isn’t where the marking is. There are four mirrors on the trip from the entrance to my room. The microwave isn’t broken – only the “Start” button is. The pictures I’ve strung up along my wall fly off when I turn on my fan. I’ve stopped using my fan.

This is home, and I love it more than anyone could possibly imagine.

This is my life now, and it’s all I’ve ever wanted. 

~~~

Ella

Song Quote:

Something inside me has changed, I was so much younger yesterday. -Starving, Hailee Steinfeld

Brave.

 

It’s hard for me to write why I’m scared and what’s making me nervous. Clearly it’s all of it, but there’s something keeping me from using the words. In three days I’m moving out to a place I’ve never lived before to live with people I don’t know, and start a new job at a center where I know no one and will have to prove myself from scratch. It’s a lot, and my pain is through the roof. I’m barely sleeping and for the first time in awhile it feels like fibromyalgia is a dragon breathing fire once again.

I’ve been making promises to myself recently. Maybe I’ll use those words.

I promise to remember that it’s okay if:

  • I cry a lot.
  • I don’t conquer everything at once.
  • I feel scared.
  • I call home a lot.
  • I ask for help with silly things.
  • I cut myself some slack and not try as hard as I always do.
  • I feel lost and small. No need to feel even worse for feeling those things.
  • I don’t have fun right away. Things take time.

I promise to take good care of myself. To do so I need to make sure to:

  • Stretch before bed every night. Seriously.
  • Follow the annoying but wise “no-screens-after-nine-p.m.” rule.
  • Eat well, which means cook.
  • Keep up my exercise. Find a class or something… Yes! Become that young adult in a new place who joins groups to meet people.
  • Call my people.
  • Write a lot. It keeps me sane, it keeps me calm, and it’s beautiful to look back on. 
  • Listen to music all the time. Have dance parties. Rock out to my jams when I’m feeling down. It always works, like true magic.
  • Be nostalgic the appropriate amount. It’s par for the course. Draw strength from the experiences and memories.  

I promise not to forget that:

  • I deserve my best shot at life.
  • This whole adventure is a good thing. It’s what I wanted. Remember why you are where you are.
  • I am creative, capable, and a total badass, so I can turn anything that’s thrown my way into a piece of cake (that’s non-processed, dairy-free and chocolate-free. Maybe I need another metaphor). 
  • It might not be right away, but I will have fun! I will have so much fun. I can’t lose sight of that. I purposely created this year to have what I’ve been missing this past year – new people, independence and some fun.
  • There are so many people rooting for me. They have faith in me and they know I’ll do well and succeed and live a good life. If they know it, I should know it too.

Also, Ella? Once everything settles down your pain will alleviate. You know that, so don’t freak out. Survive it like you survive everything else. Don’t lose sight of everything. Ready set go.

Time to be brave.

~~~

Ella
Song Quote:

I did my best to assure her but assurance isn’t easy to give. -Words, Passenger

 

As promised, a new collage! This will go on the wall of my new bedroom.

collage

All of the pictures are from magazines, and I like to cut flowers out of different ads and glue them on for a pop of color.

collagecorner

“She believed she could, so she did”

Change.

 

Change is gathering up ahead.

I’m trying all of my adjectives.

A little while ago I was talking to my friend, Jewel,about how, when I was a little girl, I had this vision of my future self. The vision was very clear:

I’ll be independent, living in my own apartment, working a really cool job and helping people. I’ll be the person people turn to for support, understanding, laughter and ideas. I’ll have a worth of knowledge and wisdom to share. I’ll be sociable, confident, proud and happy with where I am in life. I’ll be glamorous because I’m free and comfortable with who I am.

Ringing any bells?

It suddenly hit me that somehow, without consulting the picture I had painted before I even turned twelve years old, I managed to create and execute a plan that would allow me to live exactly the way I hoped I would.

Magic? Truth.

~~~

Among the things that have already changed this past year is that I’m no longer The Sick Kid. Sure, I’m still sick (she says so nonchalantly), but I think that not being surrounded by healthy kids all day made the title fade a little. It’s not how I think of myself anymore. It carries much less weight in the equation these days.

And yet… I am sick. How will I manage?

The Change, it’s all-encompassing. I’ll be starting with a completely blank page. I’ll be living and working with people I don’t know. Absolutely everything around me will change and be different than it is right now. Three months from now I’ll have a whole new world.

I find myself in need of a reminder that that’s a good thing. That’s why I’m writing about Change – because it’s desired. It’s healthy. It’s what I want and what I’ve been waiting for all of this time.

Take a deep breath and look around. Appreciate where you are right now before it all changes. Don’t let a single good thing pass you by. Take snapshots of moments with the people you love and admire. Spread your arms and soak in the feeling of the present. Change is coming.

Get your adjectives ready.

~~~

Ella

Song Quote:

I walked off an old me… And now, breathe deep, I’m inhaling. –Alaska, Maggie Rogers (in love with this song!)

{By the way, please note that this is filed in a new category called “Changed.” Future posts will also be in “Changed.” Welcoming in a new era, three years on…}

 

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.

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?

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 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