Day 1.

 

December 3rd, 2016 – December 21st, 2018

 

His key on my desk. It’s over. Pile of tissues on the bed. On his side of the bed. An empty shelf in the closet. Missing utensils in the kitchen. No toothbrush. No future together.

I wanted one more night. I needed it. To live it while knowing it was the the last one, to hold him tight, to memorize the way it feels with him. To look into his beautiful eyes while I still could, and tell him how much I love him. I asked him for the night.

We both knew. We’ve known for a while. It was in the air, and we left it unspoken, so we could just have a little bit more time. It was heartbreakingly, gut-wrenchingly, sad.

There was nothing left to say. He won’t be my one and only forever. He won’t be mine anymore. Two years is the time we were destined to have.

But we tried so hard to save it. I tried so hard. It has taken me months to come to terms with the fact that there is nothing left I can try, nothing else I can do, except accept the situation. There’s no use fighting the truth anymore. You can only fight for so long.

We knew it had to end, and we knew that it would. That knowledge was tearing me apart. For months I’ve been stuck in a loop, trying to bring myself to end it but not wanting to. My heart has broken every day, over and over again, but it I never gave it a chance to heal. I’ve been preparing for Day 1 for so long, and fearing it for so long, but I never made it to Day 2.

Now it’s over. It’s Day 1. And tomorrow will be Day 2.

~

We put his things in the car and he pulled me a few steps aside. We hugged, and he twirled me around. We looked at each other lovingly, tears falling on my cheeks, glistening in the sunlight. We kissed. He called me his. I called him mine. He told me I’m beautiful. We walked the few steps back, holding hands. “My first love,” I smiled up at him, holding him with two hands. “And hopefully not your last,” he said. And smiled back.

~

Ella

~

Like it was written for our last night together…  “All I Ask” by Adele:

 

I will leave my heart at the door

I won’t say a word

They’ve all been said before, you know

So why don’t we just play pretend

Like we’re not scared of what is coming next

Or scared of having nothing left

 

Look, don’t get me wrong

I know there is no tomorrow

All I ask is

 

If this is my last night with you

Hold me like I’m more than just a friend

Give me a memory I can use

Take me by the hand while we do what lovers do

It matters how this ends

‘Cause what if I never love again?

 

I don’t need your honesty

It’s already in your eyes

And I’m sure my eyes, they speak for me

No one knows me like you do

And since you’re the only one that mattered

Tell me who do I run to?

….

Let this be our lesson in love

Let this be the way we remember us …. 

 

Teardrops on the Stairs

I left a path of teardrops on the stairs today. I think I’m going crazy. I walked in a circle, sat in a circle, turned in a circle.

I cried today. I cried because I needed to scream. In the rare few hours with the house to myself I wandered around and trailed tears behind me. I cried on the floor. I cried on a chair. Tears and tears and tears and tears.

Today I let myself feel the self-pity and fall apart. I let myself cry and cry and cry.

My body is rocking. Rocking back and forth as my brain tries to cope with the pain it’s sending, so distraught over causing its own demise. I blame you, brain.

I cried because I’m angry. I’ve lost so much in my life because of this and I feel my future slipping through my fingers. The decisions, the important and meaningful decisions, are being made not by me but by my illness, whose existence I’ve been bearing upon myself, by myself, for the last four years.

I wish I could end this on some uplifting note of how I carry myself gracefully and nobly through the pain, but I cannot. Today I bowed beneath the pain, I broke. The task is to build myself up again, but I can’t locate the part in me that knows how to do that. Maybe it broke.

Today I left a trail of tears on the stairs, and I can’t find a tissue to clean it up. I fear someone else will slip as I have.

Ella.

Song Quote:

You’ve been crying out for forever, but forever’s come and gone. -When You Break, Bear’s Den

Rainbow Area

 

In life, there is an accepted term, “gray area”. It means things aren’t black and white; there’s no clear separation between good and bad. I’ve always accepted this term, and it never occurred to me how wrong it is until today.

It’s a rainbow area. It’s an area where a lot is happening, where things shift and change according to what we’re feeling and the circumstances, and what better way to represent shifting than color? I’ve always felt that I have some small version of synesthesia, because memories, dreams and feelings are represented in my heart by colors and shades of lighting.

I sometimes wish there was common ground in colors. If I tell someone that today I’m feeling orange, they’ll think I’ve gone a bit loco. To me, this makes sense: orange is a feeling, it’s the kind of mood I’m in. Yet when I try to translate this into normal people terms, it loses its meaning, and I simply say I’m feeling fine. But I’m feeling orange.

Humor me for a minute, and pretend you understand what feeling orange means.

Now do you have a better sense of me? Yes. Do you know what my day has been like? Yes. Do I need to say anything else in order for you to understand? Nope. Orange sums it all up.

Unfortunately and fortunately, colors are not used as everyday adjectives in the sense of feelings. Yes, I know what you’re thinking, you can “feel blue”, or “see green”, and these have a commonly accepted meanings, but they don’t count. Specific colors have been allotted certain connotations, and that doesn’t mean that’s the way I’m feeling. In my cozy world, green does not mean someone is jealous. Green can mean many, many different things, and jealousy isn’t actually among them.

So next time, instead of using the term “gray area”, please use “rainbow area”, and explain it to them if they don’t get it.

rainbow powder

Let’s make this a thing, people. #RainbowArea . It started here.

 

Yours truly,

Ella

Song Quote:

Loving him was red. -Red, Taylor Swift

 

Sheesh, time is flying! Don’t forget to send in your 2,500 competition entries! All of the info here: 

The deadline is Monday, July 14th!!!

In addition, I will hopefully be getting back to regular posts now that school is over for the year. I survived! I did it! For a few months now I just haven’t had much spare time, but as I said, you can start looking forward to weekly posts again :)

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

 

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

Never Feeling It Again

Origin-of-Acupuncture

There were two days last week that came and went without my headache showing up, and I’m scared. It doesn’t make any sense to be scared, I should be happy that I might be getting better. Actually, I should be way more than happy, I should be ecstatic! But I’m not. And I’m trying to figure out why.

I’ve waited for this day for so long, for a day that’s headache-free. It’s been over two years since I’ve had one. Every single freakin’ day I have pain. There’s really no exception. But I’ve been on a new treatment plan, made up of three components: a concoction of herb extracts (nicknamed “potion”) taken twice a day, acupuncture, and a gluten-free, dairy-free, processed-free diet. I was told that if I follow the plan, I should be feeling much better after three months. To say I had full faith in it would be a gross exaggeration. I’ve been told that many times before. In fact, two and a half years ago I was told my recovery time frame will be two-three months.

But because I had two days without a headache, everyone around me asked me if I’m feeling better. Actually, I was told by other people that I’m feeling better, based on my behavior, apparently. So I started to really believe it. Excited, I happily shared the news with just about everyone that I might be getting better.

But now I know what I’m scared of. What if this is a fluke? What if this week is just a hiccup, and I go back to my sorry state and stay sick for many more years to come? And now everyone thinks I’m getting better, everyone is going to expect me to act healthy and be happy and yadda yadda yadda. I’m going to have to play the thankful survivor who made it out of the darkest time in her life. But I don’t want to! First of all I don’t want to do that even if I do keep getting better, and I especially don’t want to if I don’t keep getting better.

It’s like suddenly there’s all this pressure.

What if I don’t know how to be healthy? Oh great, I’m crying again. I hate when this happens. But seriously, what if I don’t? It’s been so long. Being healthy is something I dream about, not something realistic. I’m so used to being sick by now. It’s just my life, and it has been for a while. All this time I’ve viewed fibro as something that’s holding me back. But how much of it is ingrained in me already? How much of the sick person will disappear once I’m no longer sick? This isn’t just a blip in my medical history, it’s become (unfortunately) a part of who I am. So that’s it? If it even goes away, everyone will just expect it to disappear from me. They’ll think, why is that girl so ungrateful? It’s gone, why is she so caught up in the past?

But… But… I don’t know what to do with myself. I’m still working my hardest to get better, following the plan, exercising, not over-doing myself. And I’m training myself to see the positive in getting better (which is ridiculous, because it’s literally been my dream and goal for years and I’ve just been yearning for it, but now it feels like some impending doom, which probably means there’s something wrong with me and I’m ruined for life), but it’s scary.

It’s scary because I also don’t want to let myself believe it’s happening. What if it doesn’t? Then it’s just this tempting tasting of what I need and it’ll be taken away from me once I stop being scared of it.

Do I even make any sense? My tears are blocking the screen, I can barely follow what I’m writing.

Yours truly,

Ella

Song Quote:

Seems to me like I’m just scared of never feeling it again. –High Hopes, Kodaline

 

P.s. Cameron Von St. James sent me an email the other day, letting me know about a beautiful tradition his family has started since his wife got sick with cancer and needed to have a lung removed. They created a beautiful website (you only get the full experience if you view it on a desktop), and I’d like to share it with all of you:

http://www.mesothelioma.com/heather/lungleavinday/#.UuTHdf3g7u0