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

Advertisement

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.

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.

“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…}

 

One Hell of a Year – 19

18 started with uncertainty, exhaustion and a dramatic collapse. I was plagued by the question marks and the sorrow of regret, immersed in the emotional storm of goodbyes and the pre-graduation pressure. My strength was failing me, just when I needed it most. I couldn’t help but reflect on the year I had had and feel as though it might have gotten the better of me. I graduated and said goodbye to a place that had been my home for the best and worst years of my life. A few days later I fulfilled my dream of cutting my hair short, and embraced the new look as a symbol of the new phase in my life.

18 continued with me starting my volunteer position and feeling lonelier than I’d felt in a long time. Starting from scratch in a new environment was a challenging, frustrating and upsetting process for me, and my friends weren’t around. They too, were going through their own processes of change. It took some getting used to.

I wasn’t quite sure where my place was. High school wasn’t my home anymore, but the foundation wasn’t my home yet. It was strange, and at the same time sort of freeing.

A few months in and everything had settled down. By ‘settled down’ I mean ‘picked up’. I had so much going on – because things were going well – that I very nearly couldn’t handle it all… And I loved every minute of it. My friends and I adjusted and the time we spent together became true quality time. My memory and my diaries are peppered with our adventures, our birthday celebrations and our (many) lazy, lounging catch up sessions. We realized that not being together all the time meant having countless stories to share, and we appreciate every moment we get to spend together now. We are evolving and so is our friendship. I love them so much. I’ve also made new friends along the way, and we’ve had our own share of wonderfully random adventures…

The foundation became my home (understatement). I’ve always tried to be kind to other people, but this year it was my job to do so. I made people’s lives better and I made magic real. I’ve grown so close to the people I work with and we’ve had such a beautiful time together. The staff meetings, the lunches, the office banter, the events, the work itself… It’s been my everything. They know me: they know how much I care, they know what I’m capable of and they know just what to say and just when to say it. I’ve learned so much from them and I’ve loved feeling embraced by their love and appreciation.

As 18 started to come to a close I started to figure out what my next step would be. My goal was to know my plan by my birthday and my plan succeeded. I’ll be finishing my year with the foundation in two months and moving out of my parent’s house to do another year at a new non-profit. I’m not sure I’ve ever been this excited about something so inherently scary. Realizing how little time I have left with the foundation has made it all very real. I’ll miss them and I’ll miss being one of them, but I will never, ever, forget how much it has all meant to me.

18 is over, and it was better than anything I ever expected it to be. I’m overjoyed to say that looking back, I feel proud. This year did not get the better of me – I made it what it was. I truly lived it to the fullest. 18 will go down in history as one hell of a year…

This year I’ve realized that I love who I am as an adult, I’ve wasted way less time worrying about things I can’t control and I’ve learned how not to give a fudge and just cut myself some slack.

This year I changed my ringtone to “Here Comes the Sun”, and that really says it all.

19 – bring it on.

Love,

Ella

Song Quote:

I see skies of blue and clouds of white, the bright blessed day, the dark sacred night, and I think to myself, what a wonderful world. –What A Wonderful World, Louis Armstrong

 

“You can take the girl out of the foundation but you can’t take the foundation out of the girl.”

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?

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

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 Letter to My Enemy

Dear Fibromyalgia,

I’d like to talk doogree with you.

           Doogree- straightforwardly, with no beating around the bush

I am no longer naïve enough to believe that despite your presence I can make my life the way I’d like it to be. I am old enough now to realize that I can never make peace with you. I will never be my truest self until I am rid of you.

Did you hear that? I will not be free until I am free of you.

You are constricting me. You are suffocating me. You are the enemy I fear, the pain I dread, and the negative I cannot escape. You. Suck.

My friends wonder how I do it, how I live with you in my life. I wonder why.

I just want to make sure you are not mistaken on this: we are not friends. It has been years and I tolerate you, but that does not mean I do not hate you with every fiber of my being.

See what I did there?

There is not much more to say.

The next time I write to you, I hope it will be a goodbye.

Ella

Song Quote:

Light up, light up, as if you have a choice. –Run, Snow Patrol