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?

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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.

FullSizeRender

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