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”

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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.”

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.

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!

Feeling Pathetic – The Love Song Compilation

I promised myself I would focus on this year. I promised myself I would invest my heart and soul into my volunteer work. I promised myself I wouldn’t worry too much about the future. I’ve been absolutely successful. I feel efficient, proficient, professional, and most of all: valuable. The office is going to be shocked when I leave and they realize how much of their work I’ve been taking care of.

 

But tonight I’d really like to feel pathetic and compile all of the song quotes about love that are waiting in my journal to be used. Because it’s okay to feel lonely and to wonder. Rather than finding myself in the midst of a fluttering romance, I’ve found myself listening to everyone else talking about their partners, and I feel as alone as ever.

 

Let’s just do this, and give me the strength not to feel mortified and go back and delete it.

 

~~~

 

Two young hearts will meet in the middle and a light will flicker on, where there once was none. –The Chambers and the Valves, Dry the River

 

Should this be the last thing I see, I want you to know it’s enough for me, ‘cause all that you are is all that I’ll ever need. I’m so in love, so in love, so in love, so in love. –Tenerife Sea, Ed Sheeran

 

Step out into the wild, there’s a beautiful storm in your eyes, we’re perfectly intertwined and if it’s quite all right, you could be my way of life. –Into The Wild, Lewis Watson

 

Yesterday, you asked me something I thought you knew, so I told you with a smile ‘It’s all about you’. Then you whispered in my ear and you told me too, said, ‘You make my life worthwhile, it’s all about you’. –All About You, McFly

 

When we sleep at night I hope that we write novels in our minds of what to tell each other when we wake. –Novels, Rusty Clanton (Possibly the favorite of the favorites)

 

Kiss me beneath the milky twilight, lead me out on the moonlit floor, lift your open hand, strike up the band and make the fireflies dance, silver moon’s sparkling… so kiss me. –Kiss Me, Sixpence None the Richer

 

You can see it with the lights out, lights out, you are in love, true love, you are in love.

–You Are In Love, Taylor Swift

Fun story to go with this one: when my mom had been dating my dad for a few months they went to visit her parents, who lived very far away. She was telling my grandmother about how much she missed him every time he travelled and said she didn’t understand why it felt so terrible. My grandmother looked at her and said, “My sweet, beautiful, darling daughter: you are in love.” All of my relatives can quote that line of my grandmother’s word for word. Taylor’s intonation of “you” is the same as my grandmother’s was.

Speaking of my grandmother… I just remembered that a few years ago I found these slides of pictures from my grandparents’ old house (we’re going with the flow of my randomness tonight):

 

All my little plans and schemes, lost like some forgotten dream. Seems like all I really was doing was waiting for you… It’s real love. –Real Love, Tom Odell (Also all of “Grow Old With Me”)

 

My youth, my youth is yours, a truth so loud you can’t ignore. –Youth, Troye Sivan (Technically doesn’t sound like a love song, but in my mind – seeing as I haven’t yet met my person and my youth is coming to an end – I sometimes think of falling in love as deciding to share a past we didn’t have together… my youth.)

 

~~~

 

Why did I do this? I’m going to regret doing this. I’m not going to want anyone to look at my blog ever again. What am I thinking?

But, I must say, these are all fabulous songs that have been waiting to appear on my blog for a long time now. I recommend looking them all up and listening to them, because they aren’t my loves (see what I did there) simply for their words, but for their melodies too. Can we pretend I wrote this simply as a service for the greater good of blog readers, to spread the joy of music?

Ella

 

P.s. I organized the quotes in alphabetical order by the first name of the singer, because anything else felt too preferential.

 

 

The Faux First Day Anecdote

 

I like first days because of how much I dislike them. I feel so nervous that my whole body feels shaky, my heart pounds so quickly and I pee about ten times a minute. I spend so much time thinking over every situation I could possibly encounter and yet I’m always taken by surprise. I love it because I love things that make me feel alive, and first days do that.

 

Exposition.

 

Today I woke up early (from nerves) and put on the outfit I bought specifically for this momentous event (because it’s important to feel confident and cool). I scrambled and I rushed but took the time to make sure I felt ready for this course I’ve been waiting to start for months. I had to park further than I intended, so I ended up power walking, taking the quickest detour possible to use the bathroom (duh).

 

Finally I walked up to the big glass doors (that I vaguely remembered are usually open…) and pushed. And they didn’t budge. So I peered inside. And it was empty. So I looked around myself. And there was no one else there.

 

Plot complication.

 

A guy approached me and asked if I was also there for the course, and as it would turn out we were the only two who had shown up. As we eventually found out, the course doesn’t start for another few days, and we were given the wrong date.

 

Anticlimax.

 

If life were a rom-com the two of us would go grab a cup of coffee, flirt in sepia lighting and fall in love, and oh-isn’t-fate-funny?! But in actuality I said the first thing on my mind: “Just so you know I’m going to be wearing this outfit again next time.” I think he nodded, but I’m not really sure, it’s all a bit fuzzy now.

 

Chapter 2?

 

~~~

 

Ella

 

Song Quote:

 

If we’re strong enough to let it in we’re strong enough to let it go. –Let It All Go, Rhodes and Birdy

 

February 20th update:

Funnily enough, I did end up liking this guy. He was very sweet and friendly, but he smoked and that’s a deal breaker for me. I simply noted from afar whenever he did something thoughtful and made my peace with it, until I found out he doesn’t smoke after all! He simply loved being in the sun during our breaks and went out with the group that smoked. I promptly got my hopes up. Two seconds after I found out he doesn’t smoke, I also found out he’s engaged. So that’s that.

Goody Goody

Change is change and takes adjustment, but I think I’m getting the hang of it. Things are picking up, settling in, taking off. It just feels like everything has fallen into place. True to myself I know how to recognize when things are good, and right now, things are good. And I love the weather.

The pain is still here but I’m taking care of myself. The sadness is still here, but there’s satisfaction to combat it. The loneliness is still here, but it has less of a sting to it.

I feel happy again. I feel like I have more good moments than bad moments. I’m crying less. I’m doing more. I’m watching a lot of Gilmore Girls. I’m busy again. I’m seeing my friends more. Or rather, enjoying the time I spend with my friends more than before. I feel like I have what to say, I have what to share, and I have what to be proud of again. I’m interesting and complex and funny and lively. Again.

I wish I could sleep. I mean, it would be helpful, you know? But you can’t have everything. I like that even when it takes me hours to fall asleep, I don’t talk myself into a frenzy. I write stories in my mind like I used to when I was little.

I feel curiosity for the first time in a long time. Being out of school has reminded me that I love learning and I love knowledge, and it’s a joy that is precious. I like surveying the months since graduation in my mind and realizing I’m now out of the dip. I like my clothing and I like how I look. I like that I’m good at staying in touch with people. I like that I persevere. I like that my diary hasn’t been as depressing these past couple weeks.

I like that I’m starting a course soon where I’ll meet new people and make new friends. Winter romance? A possibility.

On that note,

Ella

Song Quote:

Little darling, the smiles returning to the faces. -Here Comes the Sun, The Beatles

At this point I refer you back to “An Ode to the Changing of the Clocks”, because it is once again how I feel and I’ve been pining to feel this way for months.

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

A Conversation

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

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

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

Instead is a common foe: pain. 

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

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

Can you remember the last time you were truly happy?

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

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

Live obediently under his rule or risk his wrath.

~~~

Ella

Song Quote:

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

Actual Truth

Dear Abandoned Blog,

It’s not that I don’t love you anymore. Sometimes I just feel I’ve said all there is to say. The picture of my life has not yet evolved; I am still sick and I am still sick of it (more and more each day). Countless times I have moved beyond the moments of thinking I can’t take it anymore.

This summer marks four years since my headaches started and three years since diagnosis. What have I learned in all this time? Many things, that’s for sure, but none that make me feel like it’s been worth it.

It’s hard to be in pain all the time. As I once wrote, “My friends wonder how I do it, and I wonder why.” I often find myself in this numb state, where my anger is equal to my pain level and as the two compete I turn into a sort of zombie. I care so much that I just can’t care anymore, because caring doesn’t get me anywhere.

A problem shared is a problem cut in two, but I can’t share this pain because it is mine alone to bear. I’m by myself with it, feeling it day in and day out. I barely sleep anymore. I spend hours every night staring at the ceiling, blinking away tears, because the pain is so bad and there’s nothing I can do but survive it. All I want is for someone to hold me and make the pain go away.

Dear blog of mine, please don’t feel hurt. As you can see, I’ve been dealing with a lot. I’m very unhappy.

Since I last wrote to you, I graduated. I was in charge of graduation, and for three months I put my heart and soul into planning a beautiful evening. It took a lot out of me. I didn’t cry until after I got my diploma and walked offstage. It was a moment of relief, realizing it all went off without a hitch and I had no more responsibilities, but also a moment of great, deep sadness. I’m never going to get those years back.

I’ve been sick for so long, and the past four months have pretty much been the worst I’ve ever had physically. I told myself it was the pressure. It was the stress of graduation work, tests, social events, etc. But it’s been a month since I graduated, and I’m not doing very well. I’m in a pain spiral and it’s dreadful.

Please understand, dear blog, that it is not about you. It’s about me.

I love you,

Ella

Song Quote:

The tears come streaming down your face when you lose something you can’t replace. –Fix You, Coldplay