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…}

 

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.

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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!

A Letter to My Enemy

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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

My Relationship with Taylor Swift

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As far as relationships go, Taylor Swift’s and mine was a pretty happy love story* for a bunch of years. I was about eleven or twelve years old when I started listening to her music, and I was enchanted. I would memorize all of the lyrics, practice the tunes until I got them just right, and even make up dances to my favorite songs. There were times when the two of us were inseparable, and I would spend hours trying to figure out the coded messages she slipped into her lyric books.

When “Speak Now” came out, I bought my copy right away and took to pacing up and down my living room while listening to it. I had just started at a new school, and I remember being on the bus when a few girls up front started singing “Sparks Fly”, and being overjoyed that I too knew all of the lyrics. When someone said that all of the songs on the album sounded too similar, I defended T-Swizzle’s honor and gave them a long speech (well, it was more of a soliloquy) about how her songs are well crafted, ingenious and beautiful. I was a Swiftie to the core.

But then, entirely out of the blue, in the fall of 2012, Taylor Swift and I had a falling out. It was dreadful, and I was dying to know if it was killing her like it was killing me. I don’t think it was though. Taylor Swift once told me that to be her friend all I had to was like her and listen, and I was failing royally at that. I was disappointed in her new album, “Red”, though for a short period of time in my younger years red was my favorite color. I decided she was a bad singer who was fairly hypocritical and fake, and who should have kept her beautiful curls whole.

The thing is, our falling out wasn’t entirely out of the blue. In truth, it had everything to do with the summer that preceded said fall. I was fifteen in the summer of 2012, and I was diagnosed with fibromyalgia while at the same time the growth I had found on my back was declared cancerous. I was intensely upset and dreadfully angry, but mostly I was confused. Despite that, I had made a vow to myself many years earlier that no matter what personal hardships arose, I would never, ever, take out my anger on the people around me.

I retreated into myself, and for a little while lost touch with peace and serenity. “Red” came out that October. Are you starting to see the shockingly obvious connection between my emotional state and the condition of my relationship with Taylor Swift? I kept my promise; I didn’t take my anger out on the people around me. But I did take it out on Taylor.

Taylor is blissfully unaware of my existence, because despite my sudden loathing of her I never spread a bad word about her. There was no trash talk on her social media pages, hateful comments on her videos, or mean emails that came from me. I did not turn my words into knives and swords and weapons. My issues with her were personal, and only my family and closest friends knew of our sad, beautiful, tragic love affair.

If you allow me to quote her song Fifteen, “when you’re fifteen, don’t forget to look before you fall, I’ve found time can heal most anything.” I was fifteen, and I had been in a lot of lonely places, but few were as lonely as being isolated by an illness I had, and have, no control over. I tried to be fearless, I tried to breathe, but I was coming undone despite being tied together with a smile.

The song that led me back to positive terms with Taylor is “The Lucky One”. In it, she says “they tell you that you’re lucky but you’re so confused, cause you don’t feel pretty, you just feel used and all of the young things line up to take your place… you wonder if you’ll make it out alive”. It’s an honest song, and it reminded me that Taylor is a person, just like me, who also goes through phases and who has also has hard times.

So, Taylor, this is me swallowing my pride, standing in front of you and saying I’m sorry. It has been two years since then, and my state of shock** and anger turned into a state of sadness, one I haven’t fully gotten out of yet. Time has passed, and I know I had no right to be angry with you, to criticize you, or to pass judgment on your hair. Your hair is beautiful just the way you like it. You do have a good voice, and I do know all of the lyrics to all of your songs, and I do still appreciate you and your music (like, a lot).

I know there is nothing you do better than revenge, but please, forgive me? Can we begin again?

I have adopted the motto of “live and let live”, and though I still feel as though I have personal relationships with certain singers because I connect with them and their feelings through their music and lyrics, I no longer feel as though they have actual obligations towards me. They don’t owe me songs I’m going to like. I believe that they should write what they need to write, and if I don’t like it, I can stick to listening to their older material that I do like.

I’m writing this for several reasons: a) I wanted to apologize to Taylor Swift and b) the nature of our relationship demonstrates the process I have gone through since the two separate and inconveniently overlapping diagnoses of two years ago. Before them, though not carefree, I still had hoards of energy with which to pace rooms endlessly and “fangirl” hard. During and after them, I felt trapped in a dark and confining cage and my soul was banging around between the bars. My life was in upheaval. As time passed, though my physical pain did not diminish and has even worsened, I have gained perspective and a personal understanding of pain and its aftermath. I have become a better person, who is well equipped to deal with hardship and is used to gearing up to tackle each day as a separate obstacle. The anger has mellowed out, basically. And now I just wish as many people happiness as I can, and that includes Taylor Swift.

Love,

Ella

*Italics are either titles of songs interwoven as words, lyrics from songs, references to things she wrote in her lyric books or clever adjustments of lyrics to fit the sentence and context.

**play on the song called “State of Grace”