Home.

I love the life I lead. I love the (brave) new world I’ve built for myself here. I love everyone around me – all of these people I didn’t know four months ago, who are intertwined in my story now. I love the aspects of my life that didn’t exist before.

But I want to go home. Real home. Just for a few days.

For a few days I want to go to sleep in my old bed – a bed that knew more restless nights than restful ones. A bed that is soaked to the core and coated in memories of pain upon pain upon pain. A bed I used to lay in and dream about having the life I have now.

I want to go home, so I can crawl into that bed and cry.

I want to cry surrounded by walls that are used to containing my tears, walls that know how to stay standing in the face of whatever it is I’m feeling. I want to cry covered by the blankets that have kept out the cold, harsh reality and kept in my dreams when I just wasn’t strong enough to get up. I want to cry looking out the window and seeing the view I saw every time I cried until I went and upended my world four months ago.

I’m tired.

There, I said it. A word that I use all the time, still, but the implications of which I’ve been pretending no longer exist.

My (brave) new world is intense. I wouldn’t change a thing, but I feel physically, mentally and emotionally wrung out by all that has happened since August. I have everything I was hoping to have, everything is going so well, and being happy about that is exhausting me. I never stop moving. I never stop feeling. (I never stop feeling like I’m missing out on things, whether I spend time in my new world or my old world. I’m always torn between the two – I want to be in both at once.) I never stop missing people.

“I miss you.”

Tomorrow, I’ll go home. I’m so overwhelmed I just want to cry. I wouldn’t change a thing.

~~~

Ella

Song Quote:

Must be love on the brain, that’s got me feeling this way. -Love on the Brain, Rihanna

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

Onion.

My single roommates and I sit around our living room, scrolling through Facebook on our phones and announcing: “Engaged”… “Married”… “Engaged”. They understand there is no max to how shit I can feel. They say I make love to my food – I take my time, I make sure everything is well orchestrated, I put background music on…

My roommates and I sing nursery rhymes as we walk to the ice cream shop. We read each other texts from guys and congratulate each other on being empowered. We share our writing and speak truths.     

There was a gathering at work, a celebration. I was waiting in line for the sandwich bar with a few friends. He walked over and asked if I could put some red onion on my plate for him. I said yes. Later, after, he said, and I quote, “Thanks for the onion.” So, you know, I figure we’re friends now.

I was walking back from my pilates class a few days ago and all I could really think was, “Eff yeah”. I’m simply loving all of this.

I feel surrounded by hot and cold, hot and cold. I’m giving it no thought.

My roommate calls, “Come look at this girl’s wedding dress!” We flick through pictures and I smile inside out. One day those pictures will be of me, but not yet. I’m good.

I am thrilled through and through with the here and now.

~~~

Ella

Song Quote:

Everything’s coming down roses. – Whole Lot of Heart, Ingrid Michelson

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…}

 

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.”