Bloom.

All you have to do is write one true sentence. Write the truest sentence that you know.

-Ernest Hemingway

I never thought I would have the life I have now. I thought it was impossible, that I would be denied and deprived of it until the day I was no longer sick. I thought Bloom had been stolen from me. I thought like that up until so recently… and then everything changed.

Except that’s just it. Nothing changed. I changed. Sick and tired of waiting to be better to do what I wanted to do and live the way I wanted to live, I’d finally had enough. I remember telling my friends about this crazy idea I had. I told them where I wanted to move, that I had no idea what I would do, where I would live, or how I would get by, but that I was going to figure it out.

And I did. I turned it from something I thought would never happen, from a crazy idea, to a plan, then to a reality, to the life I have now that I can’t begin to tell you how much I love. I find myself thinking, always during the most humdrum moments, “This is Bloom”. My life was so lacking, and now I have everything I was missing. Minus health, of course.

It’s winter now and my pain is ever-present. The cold has turned my body into fragile marble. I feel like I’m drowning beneath the pain, suffocating because breathing takes too much out of me, freezing because my head can’t think over the sound of the struggle. And still —

I’ve never been as happy as I’ve been these last three months since moving. I’ve never felt this happy for this long. I’ve never been as happy to be buying fresh produce, walking to a train stop or doing my laundry. I’ve never been as happy to be in pain, because unlike in the past, I know the pain isn’t winning.

I’m winning. This is Bloom.

I’ll never forget I thought this life was something I would never have. I have it now, and not a day goes by that I’m not grateful for it. I’m grateful for it and I’m grateful for myself, for trusting my instincts and not letting my lack of hope or my lack of health stop me from daring to live.

To live in spite of it all.

Someone recently asked me how I manage to deal with all the pain, and my answer was simple: “I just really love life.”

That is the truest sentence I know.

~~~

Ella

Song Quote:

I live for this feeling, this everglow. -Everglow, Coldplay

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.

collage

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.

collagecorner

“She believed she could, so she did”

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?

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.

I Wonder

Please give me a pass for sounding incredibly pathetic right now, but I have a mental catalog of really great hugs I’ve received. I suddenly thought of someone I haven’t seen in about a year who gave me a great hug the last time we saw each other. It was a lingering hand hug – you know, the kind where the hug is officially over but neither removes their hands quickly. It occurred to me that I might have written in my journal about that hug, so I started digging through my drawers and retrieving old diaries.

As I was looking through them, page by page, I was struck by how much I have changed and how little my life has. The entries from last year could be the ones from yesterday, and the ones from two years ago could be the ones I’ll write tomorrow. I write with more finesse, maybe, or a slight twang of additional maturity, but I’m still dealing with the same difficulties. No matter how I change, advance, grow or learn, I can’t get away from this pervasive problem of my life.

I never imagined I would graduate high school and be sick. I’ve accepted a lot and have a lot of accepting left to do, but nothing can alter the fact that I’m greatly displeased with what is happening in my life. The things I’ve been writing here for over two years, about how little control I have over what happens to me and how useless hopes seem to be, are as relevant as they’ve ever been.

Now don’t get me a wrong, I’m a pro at making the best of whatever situation I find myself in. I believe in seeing and appreciating the good as I live, and remind myself every day how important it is not to see good only in retrospect. Not to look back on a time in my life and see some good aspect of it that I didn’t realize was there at the time. So as I suffer and smile through it I make lists in my mind of everything that is good, and this helps me. Helps me some, but not quite enough. Not enough to cover the sadness.

The sadness. It runs deep, maybe through my veins or my nerves, maybe in my heart or in my soul. I prefer to be alone with it, to retreat at times and allow myself to feel it as it courses, because I have a lot to cry for. I have a lot to be thankful for, but also a lot to cry for. The pain is a constant that seems to stem from my very core and that makes no sense, but the sadness I understand from the inside out. It’s there in the silence and it resonates in music, it thrums in my ears as I walk and buzzes in front of my eyes as I sleep. It’s a part of me, an integral component in my days. I live with it and it lives in me. But I no longer wonder why.

I try to remember that maybe the fact that I can’t imagine my future means it is destined to be better than anything I ever could imagine. I read my diaries and see the process of becoming who I am right now, a person I genuinely like. I can’t put my finger on just when it happened, but I have become an adult. I think practically and reasonably about decisions in my life, and I spend so much of my time now thinking of what I’d like to do with it. What do I want to study? What shall my profession be? Where do I want to live? (How will I afford that?) Which is the ladder I would like to climb?

It’s a quick step to the spiral of anxiety, realizing no matter how I plan I cannot conquer this disease and cannot live to my fullest potential. I harbored a secret hope that after finishing high school I would start to feel better and that I’d slowly but surely rise out of the pain. But alas, I’m just as sick as I was before, and I need to start figuring out how to manage adulthood in my current state. This point in my life is about proving that even if I am sick, I can still be okay.

I remember my childhood so vividly. I remember crying and thinking that good tears should not go to waste, trying to find a parent in the house and show them my state to receive some extra hugs. The real world doesn’t dole out any extra hugs when I suffer. I no longer wonder why.

I am still, in my essence, happy. But I am still, in my reality, sad. I mourn for the things I cannot have, cannot do and cannot be. I mourn.

There’s doubt. Isn’t there always? I doubt that I will ever get better. I doubt that I will live to see a time of peace in the world. I doubt that… that…

Well, this leads us to a sore spot. I know I’m lovable, okay? I know that. It’s not one of the things I doubt. It’s just something that has yet to be proven. I feel so silly for writing this, but in a way I feel it should be recorded just the same as all my other feelings.

No one has taken an interest. I’m the last of my friends… I’ve never been asked out, never been kissed, never been the object of someone’s crush. And I know my time will come, that I just haven’t met the right person yet, and that we each have our own timelines. But it makes me wonder. I wonder: why hasn’t anyone taken an interest?

When will it be my time? My time to be healthy, my time to be loved, my time to be free…

I wonder and will continue to wonder, but one thing can be said for sure, and that is that time doesn’t stop. In this moment I am older than I have ever been before and the youngest I will ever be again, and that in itself is a beautiful thing. Maybe life won’t disappoint me.

I know we’ll be fine when we learn to love the ride.

Love,

Ella

Song Quote:

If I fell in love a thousand times, would it all make sense? –Sense, Tom Odell

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