Believing in Bloom

Sometimes I just feel it’s only me.

According to my brain and heart, there is Truth, Magic and Bloom.

Truth is personal. It belongs to each of us and to none of us. Whatever my Truth is, it’s legitimate, and whatever yours is, it is too. I try to see and understand each person’s Truth in the way that they do. You can’t deny the validity of somebody else’s world.

Magic is something I can’t seem to pin down… Magic is fleeting moments of pure joy, along with moments of awe and appreciation for everything that this incredible world holds. Magic is seeing the bigger picture and knowing it’s the little things. Magic is… hope. It is not something I control, but it’s something I’m learning to preserve in order to survive. To survive in the hopes I will reach:

Bloom.

Bloom is something I will only truly be able to achieve once I am better. Once I am healthy. Once I am free: released from this prison that coils bars around my bones and marches jail keepers around my core. You know my pain and you know my frustration – I feel no closer to health than I have any of the multiple times I’ve cried to you in writing about how hopeless I am.

Therefore, Bloom feels like an abstract concept that I run the risk of never really understanding. I’m not sure I believe in Bloom. Will it all just pass me by? It’s scary to think about it, because what if I find nothing but disappointment? What if I never get to Bloom?

~~~

Still I wonder. So I take a step back and evaluate my life. What I’ve done thus far with the circumstances I have been given makes me proud. I can declare, with my whole heart, that I am doing well. As always, “still so many ups and downs”, but I don’t take for granted all that I have been managing. When I compare now to this time last year… I know so much more than I did then. I just don’t know enough about Bloom. I’d like to believe it will happen naturally. Must sustain myself until then.

~~~

According to my brain and heart:

Bloom is what my Truth will be once Magic decides to come and stay.

~~~

Ella.

Song Quote:

I wish I could live a little more, look up to the sky not just the floor, I feel like my life is passing by and all I can do is watch and cry… I miss it when life was a party to be thrown, but that was a million years ago. -Million Years Ago, Adele

(I think everyone must relate to this song so differently… the first time I heard it I cried because I felt it perfectly summed up how I feel about being sick. Now when I cry I think to myself “My life is passing by and all I can is watch and cry”.)

~~~

P.s. This post is loaded with references to earlier pieces I’ve written and posted on this blog since I created it nearly three years ago. Did you catch them?

Just Stop

Stop.

Stop the onslaught of time and how it rushes through your fingers like the sand you scoop by the sea.

Stop the pressure of the future that you can’t figure out and how it weighs on your mind all the time.

Stop doubting that you can and will do incredible things with your life and your talents and your passion for everything you love.

Stop feeling so small. Stop crying in the middle of the night, gasping for breath on your blue carpet because your life is not what you imagined it would be. Stop letting the fear get the better of you.

Just stop.

 

~~~

Life is the ups and the downs as much as it is the benign. I would never choose not to feel all of this, because all of this is what it’s all about. As always, I thank you for the kind comments you leave. You don’t even know me, and yet you know my lowest moments. Life is a journey and I’ve found myself with you along for the ride, and that is truly a gift.

Love,

Ella

 

Song Quote:

We’ve got younger faces than our hearts are letting on. -Novels, Rusty Clanton (https://www.youtube.com/watch?v=kc5X66kFIMg)

The Endless Ands

And what about those nights when I don’t want to get up the next morning? When giving up is the easier option, because really, who would love me like this anyway?

And as I write these words I wait for the fight to kick in, for the anger to strike me and tell me not to believe that. But I wait like I wait for health: hopelessly.

And what if I’m tired of waiting?

And as I contemplate the bed I am getting into, I wonder about the bed I will wake up to. Will it have been slept in? Will I have spent another open-eyed night wishing the sun would rise more quickly and yet not rise at all?

And I have two arms. One I wrap around my body, tightly, because there is no one next to me to do it. One I keep free to wipe tears. The pain is too much.

And the fear is crippling. When health is but a fantasy, the future is but a question mark.

And I want to be hopeful. Sometimes it feels like I am winning, because I have a voice in my mind that tells me that right now is not really all that bad. Manageable. Definitely not the worst I’ve had. Perspective. You know the sort.

But there’s always a tonight, and I don’t want to get up in the morning.

~~~

Ella

Song Quote:

I got locked inside a sadness, I got lost inside my head, couldn’t find a light to make me glow. -Holes, Layla

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

A Letter to My Enemy

Writing-A-Letter

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

The True Reason You Should Be Kind

How cool is the world? I mean, seriously, how cool is it? Because I think it’s pretty freaking cool. There are just so many people. Every single one of them has a name, has thoughts, feelings, and a story. Then I think of how many people have lived since ever, how many nights have been slept through and how many sunrises watched. How many breaths have been breathed!!! The average person takes between 17,280 and 23,040 breaths a day, and there are about 7.2 billion people alive today. And that’s just one single day…

I am the only person who will ever be me, and there is so much to me. That means that… it’s just… wow. I can’t wrap my mind around the vastness of it all.

I think these thoughts more often than is probably normal (we’re talking at least once a day, usually more), but especially prompted by two things: good news and bad news.

The good news is when I’m uplifted, when I realize how awesome and incredible the world is (in other words, a Big Thinking Moment). Things like the “Project for Awesome” remind me how many people have good values and are creative and inspiring. Music and books and movies remind me that I am not alone. Nature brings me back to earth (literally), and it’s when I feel peaceful and whole that I value the beauty of our surroundings and remember to stay connected to it. My family and friends remind me how lucky I am to have them. Or all of these at the same time.

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Had quite the onslaught of Big Thinking Moments as I stood staring at this and wondering how the colors could possibly be natural. I didn’t edit this picture at all — it was real life, in all it’s glory.

The bad news is when I hear about suffering. War makes me sad, and I become sadder when I realize that if we haven’t yet found a way to eradicate it, we are not as developed as we think we are. My hopelessness strips away the beauty I previously saw. Racism, cruelty, prejudice, hate, torture, rape, murder… I lose my faith in humanity, if only for a few moments. This is when I realize that if there are so many people in the world and we each experience hardships, there’s a sh*t-load of hardship going around.

The bad news is also what leads to me keeping things in perspective and not taking anything for granted. So on the personal scale I suppose you could say I find a way to make something positive of it, but in reality it just sucks and I hate the world sometimes.

I would say I range from being realistic and practical to being truly optimistic, and this is what keeps me going. My ability to find good and change the way I look at situations is something I have worked to cultivate and plan to fall back on throughout life.

So the way I approach the bad news? I try to be nice. Because yes, there are those with a vision who can change the world, and yes, I could set myself the goal of being one of those people, but that isn’t me (at least not yet). What I can do now is see people. I can notice when they’re having a hard time and need a kind word or gesture. I can tell when they need to be recognized for their personal successes and their abilities, and I try to do that for them. I also just say “hi” and ask how they are because I genuinely want to know. The ways are endless…

This doesn’t mean I’m perfect. This doesn’t mean I’m a good person. What this means is that I’m trying. That is all that can be asked of a person, and that is what I ask of you: please, try to be nice to all of those around you. Small gestures can make such a difference to people, and I’m not going to get all cliché and say that together we can change the world, but together we can make someone happy. Maybe that’s enough.

In the words of the great Ellen Degeneres, be kind to one another. Bye-bye.

Ella

Song Quote:

So, so you think you can tell heaven from hell, blue skies from pain. -Wish You Were Here, Pink Floyd

Proportional Pain and My Guilty Genes

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Scrabble doesn’t come with a question mark, so we’ll have to make do without one

There once was a girl (A) who didn’t pass her cheerleader tryouts, and she was upset. There was also a girl (B) whose boyfriend dumped her, and she was upset. But then there was a girl (C) whose friend was dying of cancer, and she was upset.

Before us we have three (fictional) girls, and each is upset. Who, in your opinion, is most upset?

Please don’t answer that because it’s a trick question. I believe that it’s not fair to compare people’s pain because each is suffering in their own right. So yes, one situation seems way more serious than the others, but does that mean that the other two aren’t upset and don’t have a right to be? No. The fact that one person is worried about cancer and the other is worried about boys doesn’t mean that the one worrying about boys isn’t distraught and in pain, and you can’t discount that.

That said, I am human and sometimes I fail at upholding my own high standards. I look at this girl who is throwing a tantrum because she didn’t get the teacher she wanted for a certain subject and can’t stop thinking about girls in many parts of the world who have to fight to get an education, and often don’t win. I want to scream at her, “just appreciate what you have!”

But then those thoughts lead me to one of the most depressing inner conversations I regularly have. I know I’m suffering, and I know my pain is real, but at the same time look at the world, look at how many people live in terrible pain due to poor hygiene and distance from medical help, and see how many of them continue living completely normally. In comparison, I’m just acting like a baby. But those thoughts don’t make my pain go away and it still gets in the way of me doing everything people my age do.

So when I have these conversations, I force myself to the conclusion that it is important to keep things in proportion and not feel too sorry for myself, because compared to some my troubles are not that bad. I do think you need to keep going and try to pick yourself up, and that’s what I do. But there is also a real reason for sadness, and it’s okay to let yourself feel it.

When someone I know is suffering from a horrible headache, I bite my tongue and never let the “now you know how I feel all the time” escape. But I always think it. It’s not that I think their pain is lesser because it’s a one off thing, it’s just that it gets frustrating when people have no way to understand what I’m going through. I want him or her, for just a minute, to try to imagine what it’s like to feel what he or she is feeling every day and how hard it would be to manage.

Then I feel guilty. For not focusing solely on the person I’m with, but mostly for treating myself like I’m the top-sufferer, like I’m the most unfortunate. I promise you I do not forget how lucky I am to have everything that I have. But then after feeling guilty, I feel even guiltier because it’s almost like I just betrayed myself by my sort of accusation that I’m just exaggerating.

It’s exhausting.

So to girl A I say that there will be more opportunities in life and this way she’ll have more free time to hang out with her friends. To girl B I say that he’s a fool for breaking up with her and if she ever needs a wing-woman I’m her girl. To girl C I tell her how sorry I am and offer her my shoulder.

I allow myself only a minute to contemplate how it seems no one is ever that happy.

 

Yours truly,

Ella

 

Song Quote:

I find it hard to take, when people run in circles it’s a very, very mad world. -Mad World, Tears for Fears

 

Next Week:

My Relationship with Taylor Swift

Get ready to tweet along with me using #TaylorReadThis, because I need your help getting her to see it! So as of next Sunday when I put it up, we’re going to bombard twitter with this hash tag and the link to the post and try to get her attention. You with me?!

Oblivion

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For always, I’ve been worried about death. To just… disappear like that? No one will ever be able to know just who you were. Your history and experiences are recorded nowhere. All of the thoughts you’ve thought, all of your feelings… they’re just gone. Never to be seen again.

Sure, your family will remember you, and your friends. But you won’t exist anymore. Ever.

It’s scary. Here I am, a living, breathing human being. And in seconds, I can be gone, along with everything I feel inside. And just like that, I’ll never be able to talk to anyone again, I’ll never see another person, I’ll never hug anyone, and I’ll never get to experience new things. Suddenly the latest conversation I had with every person will be the last.

I’m not conceited enough to think that the world will be any different without me. If I die, I’ll just die. Simple. I want someone to tell me that the world will be a less good place without me in it. That I’m important, that I’m worth something. I try to spread goodness around me, and I try to make a positive imprint. I write down my feelings so that they can’t be lost. I save pieces of things that mean something to me. I don’t want to disappear. But I don’t have a choice in the matter, not really.

I’m not going to end my own life. That’s not what all these thoughts about death are about. It’s about the opposite: I don’t want to die. Because then I won’t be alive anymore.

Yours truly,

Ella

 

Song Quote:

Oblivion is calling out your name. -Oblivion, Bastille

I Am Strong

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I’m done. I am done with being sick. I don’t care if my body agrees with me or not. I am ready to be healthy again. My fears will all go away. My worries will come to naught. My strength will come to light.

It’s time to get my life back. No, that’s wrong: it’s not time to get my life back, it’s time to get my life. A life in which I am able to achieve what I set my mind to, a life in which I am no longer held back by things that are not in my control, a life in which I am free.

Freedom is a simple word with a simple concept. The definition of freedom is:

1. The power or right to determine action (think, speak, act) as one wants without hindrance or restraint

2. Exemption from external control, interference, regulation etc.

3. The quality or state of being free

But the truth is, that freedom means something completely different for each and every one of us. There are the technical definitions of the word, and then there are the definitions we hear about in songs, read about in books, hear about from the people we look up to and figure out for ourselves.

I’ve been waiting for freedom for a long time. I haven’t been sitting around waiting for a phone call to tell me I’m free. I’ve been working hard. I don’t think that sheer will power is going to make my Fibro go away. If that were true, it would have happened already. I’m not sure I believe that the current treatment plan will help me. I don’t know if this will ever go away.

But I do believe that I am strong. Until now, I was hoping that my strength would help me through. Well, I’m done with that. Now, today, I know that my strength will help me through. I don’t know when, and I don’t know how, but I am strong and it will happen. I don’t care that this week was bad, that I was clearly not better this week. I don’t care that I don’t get to eat comfort food. I don’t care that I have to force myself to exercise even when my body is screaming with pain, trying to shut down because it doesn’t agree with me that I should be moving.

I care about the fact that I don’t get to participate in things with my friends. I care about the people who have been with me all this time. I care about getting better. It’s time.

Are you with me?

Yours truly,

Ella

 

Song Quote:

If the clouds don’t clear, then we’ll rise above it, we’ll rise above it. –Before the Worst, The Script

 

 

Quotes about freedom that I used in a speech I wrote last year:

Freedom is not worth having at all if it does not include the freedom to make mistakes. -Mahatma Gandhi

The most courageous act is still to think for yourself. Aloud.  -Coco Chanel

I disapprove of what you say, but I will defend to the death your right to say it. -S.G, Tellntyre

You wanna fly, you have to give up the sh*t that weighs you down. -Toni Morrison, Song of Solomon

It was, he thought, the difference between being dragged into the arena to face a battle to the death and walking into the arena with your head held high. Some people, perhaps, would say that there was little to choose between the two ways, but Dumbledore knew — and so do I, thought Harry, with a fierce rush of pride, and so did my parents — that there was all the difference in the world.  – JK Rowling