Changed. – 20

19 brought it on.

At 19, I moved out. I built a new life for myself, by myself, in a new city. I said goodbye to a place I loved very much, and with the support of everyone back home I went in search of something new. I didn’t have a single friend here when I moved, and today I barely leave my apartment without seeing someone I know. I have fallen in love with this city – its rhythm, its quirks, its sights, its sounds and above all, its people. This is my home now, and I will never be alone here again.

That said, it wasn’t easy. This year has been riddled with challenges, some I anticipated and many I did not. There were nights I was so tired and so achy I couldn’t move to turn off the lights, and mornings I felt so sick I cried getting out of bed. There were complications at every turn and frustrating surprises, but there were also moments of pure triumph and pride when I succeeded where I feared I wouldn’t. Nothing was ever ideal, but I adapted, managed and rediscovered time and time again how strong I am. I was determined not to let anything get in my way, and I didn’t.

At 19, I worked harder than I’ve ever worked before and proved myself from scratch. I had no idea how stressful (and occasionally infuriating) my position at the Center would be or what a toll it would take. But when all’s said and done, I think I will always look back on it fondly for one reason: the people. If it weren’t for the Center, I would not have the community that I do. I’m lucky enough to be surrounded by incredible, unique, good people. I have friends for whom words do no justice, and have had experiences so random and so amazing I could never have dreamt them up. I’ve gained beautiful people in my life without losing any I had before, and have lived memories that will last a lifetime.  

At 19, I learned a different kind of happiness I never believed existed. I used to say, “Happiness is not a state of being, it’s just fleeting moments that pass you by and you need to know how to notice them.” Now I know that the only kind of happiness I knew before 19 was incredibly fragile. That’s not the smile I wear anymore. Now, when shit hits the fan it turns into sparkles, because the happiness I have found is the kind that doesn’t run away. It trembles, sometimes, but it’s a pure and true joy that miraculously refuses to leave.

At 19, I fell in love. How strange to think that for the first half of 19 I didn’t have Tom. So much has happened, to us and between us, in just six months. He is everything I ever dreamed of, and everything I didn’t realize I should dream of. It took me a long time to believe he was real, to feel like we were real. But he is, and we are. I melt at the thought of him, and I never feel as at peace as I do when he finally embraces me in his arms. I never smile as widely as I do when he gets excited or want to sing as much as I do when I’m with him. He makes me shine. Or rather, I let myself shine when I’m with him.

I have no doubt the memories I made this year really will last a lifetime – and a lot of those memories are with Tom. We’ve gone through some really tough, trying times together, but regardless of whether I was crying or laughing at the beginning of a conversation, I was always laughing at the end. We’re the absolute cutest. We’re so in love even we think it’s a bit much. We’re a real life couple, but we’re a match made in heaven.

At 19, everything came up roses. I had fun. I worked, I worked out, I sang. I saw sunlight everywhere I looked. I cooked, I cleaned, I crashed, I took the stairs without realizing. I talked to strangers. I wrote, I read, I filmed, I edited, I felt like I could fly. I laughed so hard my collar bone hurt and I jumped every time I got a text. I cried. I listened. I took walks and got lost on purpose.

I watched the sunsets from my balcony and fell asleep on my roommates. I supported my friends, new and old, and I supported my partner, as each and every one of them went after the things they want and deserve in life. I spent hours and hours on the phone, being long distance not only with Tom but also my family and my friends from home. I took it all in and then I brought all of my worlds together.

At 19, I existed under a new sky, not because I went somewhere else but because I became someone else. I became who I’ve always wanted to be.  

I’m not 19 anymore. But whenever I walk the streets of this city, I will always be 19 again. These roads will be my memory lanes. Everywhere I walk I’ll feel the rush of independance and exhilaration all over again. Stairs will remind me of stories, buildings will remind me of people and alleys will remind me of feelings. Every step will remind me how it felt to be young and in love.

It’s on these streets that I felt more alive than ever before. It’s on these streets that I lived a life I wasn’t sure I would ever get to have.

It’s on these streets that everything changed.

I’m about to say my third big goodbye in three years. Everything is going to change all over again. Another new city, another new adventure, another chance to find myself fearless in the face of all of my fears. It’s the end of an era that has taught me more than I could probably realize right now.

Turning 20 is a big deal. It’s a big number. I always hoped I would get a chance to be a healthy teenager, but that’s not how things have worked out. After graduation I began the journey of figuring out how to live my adult life while sick, and I’ve done that. I’ve succeeded. I have been fearless. And I know, I’ll be fine. I just wish it didn’t have to be such a struggle to be fine. I’m so tired of the endless circle of pain and I wish I could make it end. I never talk about it anymore because I try not to think about it. I’ve learned to soften, lean forwards and allow my feelings to be engulfed by the presence of another person, whoever that person may be. I find solace and refuge in words that having nothing to do with pain. I submerge myself in interactions, in conversation, in laughter, so that what weighs on my heart isn’t heavy enough to hurt it.

I wish I could say there was no sadness laced into this birthday, but there is. As much as I love my life, I was forced to give up a lot and I think that will always hurt. It comes and goes in waves, the sting of all that my health denied me. But I can say there are no regrets laced into this birthday, because I have proven to myself and everyone around me that healthy or not, I’m going to achieve every goal I set for myself and love every step of the way. I may be sick and sick of it, but I am living the life.

At 20 I can say with my whole heart that I am happy. I am confident. I am in love. And I am ready – to continue having the time of my life.

~~~

Ella

“That’s the delicate way you’ve shown me, you’re the strongest person I know.” -The Streets

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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.

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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!

The Year of the Extreme – 18

18

My dad always says that the best way to live your life is by being where you are.

I’m very good at being where I am and feeling everything to the fullest, for better or for worse. Today is my 18th birthday. Looking back on 17, I see it as the year of the extreme.

When I was happy, I was really happy, but when I was hopeless, I was really hopeless. So it went with every emotion, from anxiety and sadness to excitement and love. There were times when I felt like I loved my friends so much I would burst, but others when I felt like my struggles were all for naught and I have no future. I felt everything so strongly, and though it’s part of what makes me who I am, it doesn’t lead to the most stable way of life. This year has been exhausting. Maybe it has to do with age or maybe with my personality, but I hope that in the coming year I’ll be able to maintain a steady, positive outlook.

I am a happy and optimistic person, stuck in a situation that often leads me to lose sight of all the good. There is a constant war inside of me, trying to lift myself, suspend myself, and run far, far away from the pain.

There are two things I’ve learned from a person I appreciate very much:

  • Every time I feel pain, of any kind, it only makes me more human. With every new experience of hardship there are many more people whose difficulties I can relate to and to whom my understanding can extend.
  • The moments in life of intense emotion are beautiful. Never before had I looked at my breaking points as beautiful, but this statement of sorts fits perfectly into how I view the world and manage my way through it: we can’t control what happens to us, but we can control how we look and approach it. I now suddenly find myself sobbing in anguish in my bed and thinking, “This is beautiful. These feelings are beautiful.”

I am eternally grateful to this person.

There’s this exercise where you imagine all of your thoughts as cars on a highway in front of you and you need to try to stay calm and just watch them as they pass by, without feeling like you’re in the traffic yourself. You are an observer of your own thoughts, and you don’t need to find yourself in chaotic, honking danger of being caught in the way of the cars. This year I definitely found myself precariously jaywalking.

The truth is that from every time I’ve reached rock bottom, I’ve risen with newfound insight and maturity. I’ve known for a long time that happiness is not a state that you achieve, but rather something you need to learn how to glimpse when you pass it by. If you don’t notice it, appreciate it and cherish it, you will never feel like you’ve found it. There were moments this year when I was happy. Albeit greatly overshadowed by pain, fear and anger, I will not let myself view this year as one devoid of happiness.

This year holds the record for fewest moments of hating myself. I genuinely like who I am, and in my better moments, I can see myself succeeding in my life. My parents raised me to acknowledge my strengths, and so I do. My strengths are my weaknesses, and vice versa, but I’ve made my peace with that. I am a wonderful person, if only because of how hard I try to be so, and it feels really good to say that.

I don’t know what’s going to happen to me. I can’t view myself in two months, and definitely not in two, ten or twenty years, but I have a few wishes.

I hope I never forget to remember that people are large and we contain multitudes (Walt Whitman’s “Song of Myself”, section 51). I will live my life with an open mind, open eyes and an open heart. I will always try to see people and accept them for all that they are. If there is one thing that really gets to me, it’s when people judge others and don’t give them the benefit of the doubt. Every single one of us has feelings, memories, and a story of their own, and that is never to be belittled.

“I want to encourage you to be vigilant in the struggle towards empathy… You will have a choice about how to read the actions and intonations of the people you meet. I would encourage you as often as possible to consider… the possibility that the lives and experiences of others are as complex and unpredictable as your own. That other people… are not simply one thing or the other – not simply good or evil or wise or ignorant… You will always be stuck inside of your own body, with your own consciousness, seeing the world through your own eyes, but the gift and the challenge… is to see other as they see themselves, to grapple meaningfully with this cruel and crazy and beautiful world in all of its baffling complexity.” –John Green, commencement speech 2013

I hope my relationships grow stronger and more meaningful every day. I hope I keep trying even harder to be a good person. I hope I don’t lose sight of how much I love life. I hope I fall in love (she puts in the middle of the paragraph to feel less silly for writing it). I hope I keep writing, because it brings me joy and pride. I hope I retain my enthusiasm for everything I love. I hope time will do its job and freaking cure me already. I hope I never let my difficulties cloud my vision. The vision is everything.

Nothing is ever ideal, but the love I’ve been receiving today fills me with warm and fuzzy feelings. Kind words pouring in from everyone that matters to me makes it all seem worth it.

Here’s to being 18.

Love,

Ella

Song Quote:

The backs of my eyes hum with all of the things I’ve never done. –Welcome Home, Radical Face

The Sleepless Anecdote

One might think there’s something romantic about a late night. The dim lights, the silent house, the rustle of the wind outside.

There isn’t. I couldn’t sleep. I got into bed at 10:30 and fell asleep at 4:30. That’s six hours of non-romance. It was frustrating. The crazy thing was, my brain was totally awake and processing the implications of the situation while also enjoying the game of keeping me awake.

I finished reading The Bell Jar. I watched three episodes of Friends. I meditated. I ate cereal. I took everything off my bed and put it all back. I solved a math question.

I did everything but sleep. My body is like “you suck” and my brain is like “yay I won!” and I’m like dead.

What do you do when you can’t sleep?

Insomnia for the win,

Ella

Song Quote:

Even when you’re sleeping, keep your eye-eyes open. -Eyes Open, Taylor Swift

P.s. Happy second birthday “Sick and Sick of It”!!! Rather than creating a virtual cake with candles, you’re each invited to just write a wish in the comments below. I think my wish is obvious at this point.

To Growing Up and Staying Young – 17

party ballons

With warm summer air surrounding us and the sounds of the crickets drifting in through my open window, I curled into my mother’s body and she hugged me to her; though I may be bigger than I was on the day I was born, exactly seventeen years ago, I will forever be her little baby and she will always be my mother.

She told me last year that as she turned seventeen, she was sad to part with sixteen. Today, I understand the way she felt then. Though sixteen might not have been exactly glamorous or particularly spectacular, it will forever hold a special place in my heart.

A lot has changed this year. I gained freedom, in a way, because I started and completed the whole process of learning how to drive and getting my license. Finally, something that everyone my age is tackling and mastering, and I could participate just liked everyone else. I even mastered it quickly and well, if I do say so myself. I probably annoy people a lot at this point when I talk about driving, but it’s fun to be the expert and the sage around my friends (I’m one of the only ones who can drive so far) on a topic unrelated to medical things.

The way I think about things has changed, drastically. I just approach things in a better way now. I keep up my positive thinking and I’ve developed an inner sense of humor that I’ve always had into a shield and a mood booster. I see humor in a lot of places I didn’t use to see it, and I cherish that change. It’s a change for the better.

I’m also more cautious, in a way, but at the same time I dare myself to do things I never would have done a year ago. I’m cautious with what I say and how much I share, not for fear of hurting someone else’s feelings, but for fear of sharing thoughts and feelings that I’m not yet sure about. I used to just blurb out whatever I was thinking, but now I take the time to actually form my thoughts before speaking and weigh the weight of what I’m sharing and how frustrated I will get if I can’t explain myself properly.

But I also take myself out of my comfort zone: I go places alone, I call people and talk on the phone, I do the things I know I should do but always feel awkward doing. I’ve just developed this way of approaching things and talking myself through them, and it’s starting to feel like I can tackle the things that have always intimidated me. I’m starting from the smaller things, like those I mentioned earlier, and at some point I will have the courage to face the bigger ones.

I also made the switch from thinking of all of the things I would like to do to actually doing them. I do more than talk, nowadays. Take, for example, my horrendous lack in general knowledge. For a bunch of years now I’ve been saying that I don’t know how I’ve been in school for so many years and yet there are basic things that I don’t know. This year, I just started educating myself. I bought a book called “The Knowledge Book”, and I read it before bed.

I’m just very aware of how I’m changing and how I’m learning to accept myself more and more. That’s another major change this year, my self-confidence. It’s been hard learning to accept my body with all that it puts me through, and that affected my self-confidence for a long time. But I’ve somehow learned how to separate fibromyalgia from my body, and because of that I’m learning to accept and like the way I look.

It’s exhilarating to realize that I’m getting older and there’s a whole new world of opportunities opening ahead of me, and absolutely terrifying at the same time. I’m sad to lose the feeling of being a child, of being protected by these strong and kind parents who are nothing but my parents. It’s huge to realize and to process that parents are people too, and to think of them as people before parents, but important. You do lose something though with that realization, because you can never go back. On the on hand, I still want them to take care of me and be there all the time, but at the same time the independent woman in me is showing her true colors and I just can’t wait to get out there in the world.

I’m sure it won’t be easy, but with every passing day I feel more and more ready to do it. To live life.

I propose a toast, to growing up and staying young forever.

 

Yours truly,

Ella

 

Song Quote:

Time may change me, but I can’t trace time. –Changes, David Bowie

 

The Tale of Friendship

Once upon a time, there was a maiden named Ella. On a fine summer day, she met a maiden named Beatrice. Though the two did not know it at the time, they were destined to become the best of friends.

Time went as time goes, and the girls grew closer and closer, until the day came when a big dark cloud floated over Ella’s kingdom while the two were playing. Ella was at a loss, and she surely did not know what to do with herself. Beatrice, however, was not at a loss. Beatrice had Google.

Beatrice’s kingdom was just a decurtate walk away, and after seeing the dark cloud presiding below the heavens, she sprinted to her domain. She sat in her garden, turned her head up to the periwinkle blue skies, and said, “Please Google, tell me what Ella’s big dark cloud means!”

Google’s booming voice pulsated in the air around her and made her hair flutter around her face, but Beatrice sat calmly and listened to Google’s candid answer: “My dear, the dark cloud means many things for Ella. For you, Beatrice, it means this: Ella is going to need a friend. It will probably be hard, and it will probably be forlorn at times. It is up to you what you do next.”

Beatrice stayed seated for many a minute. She had some thinking to do. At last, she knew what she must do. Beatrice went up to her attic palace, and retrieved the things she would need. She heaved the satchel she had assembled over her shoulder, and a short while later she was back at Ella’s dwelling, where she found Ella on the seesaw in her backyard. It was so dark Beatrice couldn’t even see the empty seat on the other end of the seesaw, only Ella’s pale white face illuminated by the tears streaming down it.

“Ella, I’m here. Can you see me?”

“Beatrice, is that you?” Ella exclaimed, turning her head wildly from side to side, searching for her darling friend.

“Undoubtedly.” Beatrice reached her hand into her satchel, and pulled out the fairy flashlight she had brought with her. It had been a gift from her godmother. She flipped the switch, and rays of light shone all around the friends.

“Beatrice!” Ella exclaimed as she stumbled off the seesaw and rushed to receive a hug from her friend’s endless supply. “I haven’t been able to get off that seesaw for forever. It’s just up and down, up and down. Thank you!”

“There’s more, Ella,” Beatrice said, as she reached her hand back into the sublime satchel. She pulled out a box of homemade confections, a music player full of the very best songs one could ever find, a stack of gazettes brimming with hunky dory pictures and outrageous accounts of cults sure to distract even the gloomiest of girls, and fancy cutlery fit for kings. (Because who doesn’t need cutlery?)

The maidens giggled and guffawed the hours away, day after day. The big dark cloud continues to shift and sway until today, though it never leaves. But, every minute that the girls spend together, the less frightening the big dark cloud becomes, and the more heart to hearts the girls have, the closer they become.

This is how the tale of friendship goes. In every corner of our world, when one lifts their head up to the sky and says, “Please Google, tell me what friendship means”, the response they get starts like this:

“Once upon a time, there was a maiden named Ella. On a fine summer day, she met a maiden named Beatrice. Though the two did not know it at the time, they were destined to become the best of friends.”

FIN

 


Happy birthday, Beatrice. You deserve the very best of everything. You will always have my love and my support. Be joyous.

driving terrifies people birthday

 

Good Knowledge (as Beatrice would say),

Ella

 

Song Quote:

I hope you find the love that’s true, so the morning light can shine on you. I hope you find what you’re looking for, so your heart is warm forever more. –Shine, Benjamin Francis Leftwich