Bloom.

All you have to do is write one true sentence. Write the truest sentence that you know.

-Ernest Hemingway

I never thought I would have the life I have now. I thought it was impossible, that I would be denied and deprived of it until the day I was no longer sick. I thought Bloom had been stolen from me. I thought like that up until so recently… and then everything changed.

Except that’s just it. Nothing changed. I changed. Sick and tired of waiting to be better to do what I wanted to do and live the way I wanted to live, I’d finally had enough. I remember telling my friends about this crazy idea I had. I told them where I wanted to move, that I had no idea what I would do, where I would live, or how I would get by, but that I was going to figure it out.

And I did. I turned it from something I thought would never happen, from a crazy idea, to a plan, then to a reality, to the life I have now that I can’t begin to tell you how much I love. I find myself thinking, always during the most humdrum moments, “This is Bloom”. My life was so lacking, and now I have everything I was missing. Minus health, of course.

It’s winter now and my pain is ever-present. The cold has turned my body into fragile marble. I feel like I’m drowning beneath the pain, suffocating because breathing takes too much out of me, freezing because my head can’t think over the sound of the struggle. And still —

I’ve never been as happy as I’ve been these last three months since moving. I’ve never felt this happy for this long. I’ve never been as happy to be buying fresh produce, walking to a train stop or doing my laundry. I’ve never been as happy to be in pain, because unlike in the past, I know the pain isn’t winning.

I’m winning. This is Bloom.

I’ll never forget I thought this life was something I would never have. I have it now, and not a day goes by that I’m not grateful for it. I’m grateful for it and I’m grateful for myself, for trusting my instincts and not letting my lack of hope or my lack of health stop me from daring to live.

To live in spite of it all.

Someone recently asked me how I manage to deal with all the pain, and my answer was simple: “I just really love life.”

That is the truest sentence I know.

~~~

Ella

Song Quote:

I live for this feeling, this everglow. -Everglow, Coldplay

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…}

 

The Sunburn Anecdote

 

I’ve been a bit of a mess lately. I’ve been in good spirits, actually, but I think my brain has decided vacation has arrived (no vacation in sight) and is really enjoying kicking back. The other morning I woke up with only one earring in. I looked everywhere, scoured the office, called shops I’d been in, the whole shebang, and I was forced to come to terms with the fact that it was just gone.

But then I found it! Very early yesterday morning I decided to check the shower again, and as I pushed in the door I peeked around it and lo and behold there was my earring, a frighteningly small distance from the drain. Needless to say I was overjoyed and went about getting ready with a spring in my step.

I needed to leave the house quite early to meet up with a coworker at a golf club. Now erase that image of me as an old white guy, and replace it with this: the nonprofit I volunteer with is organizing a golf tournament fundraiser with this club, and we need to take it in shifts to be present and recruit players to sign up. I happily told my coworker that I found my earring (hallelujah) and we set up our stand in the sun because we were cold.

Then the wind happened. I had a cup of orange juice on our table, and the wind knocked down our poster, which knocked down my juice and spilled it all over our materials. Oops. Also the cup broke.

Now I have a tale to tell about a man named Richard (so fitting for the setting it’s actually ridiculous). Richard is a bit creepy. Is creepy the right word? Maybe we’ll call him pervy. The first time we met on the course he called me pretty, which is fine (ish) unto itself except then he made a joke about how my grandmother is probably too young for him and how funny is it that he still falls in love with girls like me? I’m barely 19. Yeah. So that’s Richard. We talked about atheism and his grandchildren (no relation between the two subjects).

I saw Richard again yesterday and while my coworker was busy being amused by our conversation Richard told me I have to take better care of my skin. I ignored this comment as another “old man talking to young girl about preserving good looks” comment, but when I left the club I discovered he deserves more credit than I gave him…

I kind of burnt off my neck. It’s kind of a highlighter pink hue, it’s extremely pissed off and it is going to express it’s rage for the forseeable future. Sorry, Richard. I’m sorry I didn’t listen to you.

Now the thing about sunburns isn’t just how painful they are. Whenever I see the red skin in the mirror I get angry. I mainly get angry at myself for not taking better care of myself, but I also get angry at the sun and at random people around me. It turns me into a bit of a witch. Bye-bye, good mood.

On my way to the office I stopped to gas up the car and pulled into my regular lane. The guy working there (we’ll call him Gus cause I’m lazy and Gus seems like a good name for him) smiled a cocky smile and motioned for to me to move to the lane over. I was like, “Sorry buddy, but the cap is on this side. I know what I’m doing.” But Gus kept smiling and kept motioning, so finally I pulled into the other lane and lowered my window. “The station there is out of order,” says our chummy little Gus. “Turn around and come to this one in the opposite direction.”

Okay, maybe his words don’t sound condescending here, but it was the way he delivered them. So I turn around and pull up, tell him what the car needs and he just stands there smiling. What, Gus? What do you want from me? He just keeps standing there. Eventually he says, “You need to open it for me.”

I felt like squishing his face. I’d had enough of misogynistic men for the day and he was just looking at me like, “Look at the silly little girl who doesn’t know what she’s doing”.

Let me tell you something, Gus: I’m doing more with my life right now than you will ever do with yours, so get off your high horse and treat me with the respect I deserve.

So I got to the office, completed my entire to-do list (!!!) and grabbed something we needed to exchange at the mall. Where I encountered an idiot. The day was really just not going well. The trainee at this store, who refused to call her superior, had a lot of difficulty figuring out what to do with my receipt. Twenty minutes later (I’m not exaggerating, I timed it) she told me I needed to pay the difference between the two products, which came out to 176 (local currency). Now listen, honey, I don’t know if you have any sort of education, but the difference was 30. 30! Not 176. Another ten minutes later (half an hour out the window) the superior finally shows up and go figure, the difference, when calculated correctly, is 30. Thank you very much, good bye.

My level of frustration with humanity was pretty high at this point. This entire time I was feeling extremely self-conscious of my angry red skin and suffering immensely from the pain. I could fry an egg on the back of my neck. Lovely times.

Later that night I also broke my sister’s very expensive glass bottle of skin care something-or-other because I was trying to get my top on without touching my skin. She was mad. Sorry.

So I reiterate, I’m a mess. But at least you got a lengthy rant like the good old times! It’s been a while since I’ve had to write something like this. Good thing or bad thing? By the way, this blog just turned 3 years old! I still have a little notebook where I recorded the first like! And the first follow! And the first reblog! I tried to keep track of when I hit milestones, like 10 followers, 100… Little did I know I would go on to celebrate 1,000 and 2,500 and now we’re at 3,600! Craziness. Thank you for all the love.

~~~

Ella

Song Quote:

It’s a wonder at all that I survived. –This Is War, Ingrid Michaelson

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.

IMG_1896

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Love,

Ella

 

Song Quote:

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

 

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