Actual Truth

Dear Abandoned Blog,

It’s not that I don’t love you anymore. Sometimes I just feel I’ve said all there is to say. The picture of my life has not yet evolved; I am still sick and I am still sick of it (more and more each day). Countless times I have moved beyond the moments of thinking I can’t take it anymore.

This summer marks four years since my headaches started and three years since diagnosis. What have I learned in all this time? Many things, that’s for sure, but none that make me feel like it’s been worth it.

It’s hard to be in pain all the time. As I once wrote, “My friends wonder how I do it, and I wonder why.” I often find myself in this numb state, where my anger is equal to my pain level and as the two compete I turn into a sort of zombie. I care so much that I just can’t care anymore, because caring doesn’t get me anywhere.

A problem shared is a problem cut in two, but I can’t share this pain because it is mine alone to bear. I’m by myself with it, feeling it day in and day out. I barely sleep anymore. I spend hours every night staring at the ceiling, blinking away tears, because the pain is so bad and there’s nothing I can do but survive it. All I want is for someone to hold me and make the pain go away.

Dear blog of mine, please don’t feel hurt. As you can see, I’ve been dealing with a lot. I’m very unhappy.

Since I last wrote to you, I graduated. I was in charge of graduation, and for three months I put my heart and soul into planning a beautiful evening. It took a lot out of me. I didn’t cry until after I got my diploma and walked offstage. It was a moment of relief, realizing it all went off without a hitch and I had no more responsibilities, but also a moment of great, deep sadness. I’m never going to get those years back.

I’ve been sick for so long, and the past four months have pretty much been the worst I’ve ever had physically. I told myself it was the pressure. It was the stress of graduation work, tests, social events, etc. But it’s been a month since I graduated, and I’m not doing very well. I’m in a pain spiral and it’s dreadful.

Please understand, dear blog, that it is not about you. It’s about me.

I love you,

Ella

Song Quote:

The tears come streaming down your face when you lose something you can’t replace. –Fix You, Coldplay

The Hospital Anecdote

I never wanted to end up in the hospital. I never wanted to get sick in the first place.

I’m so exhausted. Yesterday was a nightmare, and I wish I could erase it from my memory.

But I keep thinking of two things: the song that played in my head while I listened to other people moan and cry out in pain, and the hair cut I’ve been dreaming of for years.

“All I need’s a whisper in a world that only shouts.” Poignant as it is, I’ve related to it since I heard it for the very first time. But after everything I went through yesterday, it was the soundtrack and is still at the forefront of my mind. I don’t deserve what has happened to me. I am a good person, and this is awful stuff. The pain I suffer through is not fair, and yesterday was a bad dream that really happened.

I’m getting a pixie cut. This is so unrelated, but lying in bed today, all day, I keep thinking about it. How free I’ll feel, how cute it’ll look and how I can’t wait to release the weight of all of this long hair. I never realized what a burden it was until I decided to cut it off.

This haircut is now linked, hand in hand, with graduation. I naturally create things to look forward when I’m staring at a bleak stretch of time. I’m about to finish high school and I have no clue what my life will look like. The fear threatens to cripple me every day. Because here, look what happened! I have three weeks left to the year and it was so important to me to feel like I’m not missing out on anything, so I pushed myself beyond my limit and yesterday happened.

Yesterday.

Isn’t it fun when you end up in the hospital? When the dramatics went down in school and they carried you through the building on a gurney to the ambulance?

My own voice is echoing in my mind. “Why are you being so mean?” I tried to yell at the paramedics. They were hurting me, but I could barely talk. I don’t know if I screamed it or not.

Isn’t it funny that I just turned eighteen? At eighteen and three days I wasn’t allowed to go to the children’s hospital and had to go through the regular emergency room. I spent seven hours hearing awful sounds and seeing awful sights. All I need is a whisper.

From the worse pain to the shaking hands, from the tightening sensations to the embarrassment, from the worry and fear to the panic. From the mob of spectators to the scary paramedics, from the rough yanking and dragging to the collapsing, from the stairs to the chair and the chair to the gurney. From the sirens and the movement to the bed-to-bed, from the ugly curtains and needles and sleepy eyes to the waiting and waiting and waiting. The sounds of suffering, the yelp of the in pain. Curtains don’t block sound. The man who yelled that the nurses don’t care if his wife dies. The man was removed by security. I cried and cried – the woman was alone now. I want to go home. The world only shouts.

Erase. Erase. Erase. Delete. Backspace.

Now I should think of a way to look at this differently. I shouldn’t be angry at the world; I should appreciate what didn’t go wrong.

My friends were amazing. They acted quickly, and well. They love me. It upsets me that they saw me like that. They love me. My family loves me. Yesterday proved how beautiful my support system is. I have people, and I am so grateful for this.

What my body did to me yesterday was a reminder that I’m not superwoman. I can’t do it all. It might not be fair, and it might upset me very much, but I just can’t do everything I want to. I need to take care of myself, slow down, be more careful and go back to living life in small doses. If I could choose a super power, it would be healing. To be able to look at someone who is suffering and heal them. I saw so much pain yesterday.

These last few tests are going to be a struggle, but I will manage them and I will graduate. The next few days will be spent in bed, but after that I will pick myself up. I will get a pixie cut and then I will feel free and adult and optimistic about my future. It will mark this transition in my life, and it will be a sign that I can control what happens to me and how I deal with it all.

Ella.

Song Quote:

Well it’s hard to find a reason, when all you have is doubts, Hard to see inside yourself when you can’t see your way out, Hard to find an answer when the questions won’t come out. Everyone’s filling me up with noise; I don’t know what they’re talking about. You see all I need’s a whisper, in a world that only shouts. –Whispers, Passenger

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

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

On Self Defense and Being Awkward

images-13

A* has intimidated my entire grade since we were in our early teens. He’s tall, broad, staring and deep-voiced. One might think his stutter could even out the playing field a bit, but it simply gives him an additional edge: it’s ominous.

When his legs were hurt this summer, my friend and I wanted to go visit him in the hospital to be nice and show we cared. But what do you bring with you to visit someone you don’t really know? I had no clue as to what to bring, say or do. So I went with what I know: writing. I wrote him a card. Damn that stupid card.

We got there and instantly felt out of place, because his friends were there and he didn’t really know us that well. And we were intimidated. We tried to stick as close to the wall as possible to leave room for the people he actually liked to be near him. We kind of wanted to leave, but we were dependent on busses to get home and we didn’t want to wait outside the hospital for forever. So we stood, awkwardly, praying we disappeared into the background.

Finally, an hour later, it was time to go catch our bus. But I was still holding the letter that I’d taken out of my bag as we’d entered, and had since clasped in my clammy claws of hands. Eventually I said, “Where can I put this?” and he said, “Here, you can give it to me.” I passed it to him, wanting to snatch it back and burn it.

Months later, I was sitting in the school lobby and looked up to see him standing next to me. Standing. I squeaked out “hi!” (Intimidated).

“Hey. How are you?”

“I’m fine, I’m fine. You’re walking!”

“Limping,” he corrected, and thus ended our interaction.

After that, they told us in class to bring our gym clothing for the next day, because A was going to teach us some self-defense. A few weeks before there had been an incident with a knife outside our school that ended, thankfully, with no injuries, but with an injured sense of security.

Knowing I wouldn’t be able to participate fully, I decided to at least dress the part. I might stand out because of everything else, but I refuse to stick out because of my clothing. So I come in my t-shirt, leggings and sneakers, and slowly take in that everyone else on the field is dressed normally. So much for that.

I also knew that I would have to let A and the other instructor know in advance that I wouldn’t be taking part in everything and I would be more of an observer. In theory, that part shouldn’t have been so bad.

Except that I miscalculated how far away they were from me. I started off at my normal walking pace, which I wouldn’t call slow but also can’t categorize as fast. If they hadn’t looked up I would have been fine. I would have had my time to collect my thoughts and call out to them in my own time. But they looked up, and saw me coming from a distance. They halted their conversation and focused on watching me approach them. Let me stress this: they were just standing there, watching me walk to them. Eye contact? Yeah, there was some of that. Awkward eye contact? Yeah, heaps of that. I kept walking and walking and walking and it felt like I might never reach them.

Then came the dilemma: do I speed up, now that they see me coming? I mean, these hulks of men might get impatient and why would I want to add fire to their wrath? But I decided to stick to my original pace, feeling that that might exude a sense of calm and normalcy about my gait. Once I was within earshot, one of them called out, “Hi.”

“Hi,” I said. Steady breaths. I didn’t feel as short as I thought I would, but that didn’t improve things much. “So here’s the thing I have health problems and I can’t participate in everything but it’s okay I came to watch and I’ll do what I can and it will all be fine so yeah thanks.” And breathe.

“Okay.”

Okay. So, I guess I leave now… right? I said what I came to say, but they’re still looking at me. Deciding once again that consistency is best, I turn around walk away from them at my steady pace, except I now feel their eyes on my back (or butt? *Nervously tugs down the hem of her T-shirt*).

Did he read my card? As the thought occurs to me during my time-consuming departure from them, I’m almost sure they can see my blush through the back of my head. He never said anything. I never said anything. Did he read it? Does he think I’m stupid? Am I stupid?

Uh oh, hell no, how do I stop these thoughts? Well, having to turn around and face them as they called us to attention was probably not the best way. Turns out that they were following me, about five paces behind me (of course).

The value of the self-defense that I learned most probably outweighs the discomfort I felt for a few hours, and will likely stick with me for much longer, so I’m going with positivity for this case.

Until the next time I cross paths with A….

Ella

Song Quote:

And the only solution was to stand and fight, and my body was bruised and I was set alight. -If Only For A Night, Florence and the Machine

*Want to guess what A is short for? Leave it in the comments, and get creative!

Silent Night, Peaceful Drive

0619f575f645f933906a5840bd74d5cb-d5vujhi

Driving at night is so peaceful. I spent almost an hour in the car last night, and even though I had music on, it felt silent. The world was rushing by but my brain wasn’t whirring at full speed.

In the car, I have power. Control. I may not be able to decide how my body behaves or how I wake up feeling, but I do get to decide where I drive and how fast I go.

In the car, my headlights form spotlights. For once, what the light illuminates is not the good, the bad or the ugly. It is the road. Always showing you where you are headed and gives you a way to survive.

Okay, reading that back, that last bit came out really pretty. Excuse me as I pat myself on the back.

In the car, my physical limitations evaporate. I can get where I want to get to, and nothing is a struggle. I am patient, and thus not even traffic can damper my mood.

In the car, I am safe from the rain. I stay cozy and dry, and watch for once as the bad thing is outside and not within me, not a part of me. I am but a bystander. The pain? Not mine. It is the clouds that are crying.

If only I could stay in my car and face the world from within, protected.

Yours,

Ella

Song Quote:

Good morning freedom, goodnight lullabies. –Drive Darling, Boy

Shining, Elegant, Weightless White

In an uninspired moment, I tried to think of something to write. My brain seemed to be tired of words. I’m scared fibro is taking over. I wrote this:

Like a thin sheet of aluminum foil,

Wrapped tightly around my forehead.

It’s thin,

But heavy, heavy, heavy.

Pain has turned it into a dark, somber, rusted gray.

 

I imagine white acrylic paint and a paintbrush.

I painstakingly paint every millimeter,

Over and over,

Until the layers are threefold thick.

It’s a shining, elegant, weightless white. 

 

I wave my magic wand,

Wingardium Leviosa,

And it floats before me,

As I observe it in all its glory.

 

When time comes to me,

I open up a stark white pouch,

Place the luminous pain within,

Open up my drawer,

Slide the pouch inside,

And bid it good bye.

 

Until I see you again.

Yours truly,

Ella

Song Quote:

Try and stay out of your head, I have seen you invent the damnedest things there. –Take a Bow, Greg Laswell

(My new ‘song of the week’ is waiting for you on the right side of your screen)

Ready For a Zombie Apocalypse

You heard me. I’m ready. I have a bunch of vegan and vegetarian friends, there is food hidden all around my room, and my sisters recently counted how many bathtubs and sinks we have and came to the same conclusion I have: we’re ready.

 

Which is not to say we believe in such things. We’re just ready. Better safe than sorry.

 

Okay, obviously I’m kidding. Although everything I have said is true. The friends, the food, the bathtubs- all real. I’m writing this because I only just realized that zombie apocalypses have been a sub-theme of my past few days. Probably because I have been thinking about our worst fears.

 

Are they destined to come true? Because two major ones of mine have.

 

One thing I have been afraid of ever since my sister got sick has been getting Fibromyalgia. Check that off the list people. I was diagnosed with it this summer.

 

Another has been cancer. Put half a check on the list. The growth was around before I was diagnosed with Fibro, but the results of the second biopsy came after. Half a check because it seems like now everything is fine, after the surgery to remove it.

 

My point is, if two core fears of mine have come true in the past nine months, will all of them come true? I watched a documentary portraying a woman who lived her entire life in fear that a man with a knife would break into her house, and then one day it happened. So thinking beyond the fact that I have to stop watching weird documentaries (there are awesome ones about gypsies too), maybe our fears are meant to warn us about what’s going to happen?

If that’s true, I’m in for the long haul.

 

I try not to live my life in fear of anything. When I break that personal policy, it’s to contemplate how awful it would be to lose another family member. But night after night, this idea about fears keeps haunting me: are they going to come true?

 

I’ve had enough suffering in my life, and I’m nowhere near even being an adult. I like to think that maybe I’m getting my suffering over with now, so that when I’m older, I can be more free. If not that positive outlook, then maybe there is just so much suffering planned for my life, that I was done the favor of having it spread out over my entire existence so that it never becomes too much?

 

Deep thoughts such as these are what keeps me up at night. These, and worrying that my non-existent pink piggy bank will be broken into in sleep, worrying that the sun will fall (what would happen…), worrying that I will get a stain on the rug of the family I babysit for (that rug if freakin’ pristine), and worrying that my apple might get depressed. I’m versatile.

I’m going to end this late night rant with one thought- if fears aren’t meant to be foreshadowing our futures, do they do us more bad than good?

Dream happy dreams,

Ella

 

P.s. Starting to see the source of the ‘tired’ in my name?

Song quote:

But it’s harder than you think telling dreams from one another. – Daniel In The Den, Bastille

thinking by Luis Alves

I Am Effervescent

Image

Every now and then, despite everything that is going on and all of the hardships, I have these moments where my thinking becomes big. By big, I mean I think beyond whatever is going on in that moment. I think about how incredible society is, even the fact that it exists. I think about what the point of life is, why we’re here. I think about the little things of life that I love more than anything. But most of all, during my big thoughts moments, I think about the positive of my world.

 

I have an internal list of the nicest things people have said about/to me. My mother told me the other day that “to know you is to love you”. A family friend told my mom that when she thinks of me she “thinks effervescent”. My father tells me that “your kids are going to be so fortunate to have you as a mother”. All of these things, that take people seconds to say, stick with me, forever. For the better and for the worse. But with my mood right now, it’s for the better.  I love it when I feel like this.

 

My friend has this huge jar sitting on her desk. Every day, she writes down something nice that happened to her and puts it in the jar. As opposed to me, where every night, as I try to fall asleep, every bad aspect of my day comes to haunt me.

 

I feel like every person is born half blind. We have to spend our entire lives training ourselves to use the other half available to us. We need to learn how to see the little things that are so incredible, I can’t even write them down. You’ll have to feel them for yourself. When you do, suddenly everything around you will have this sort of… buffer. This buffer lets me be in a good mood even though I’m having a hard day physically. This buffer is letting me write even though I want to lie in bed. This buffer is… the other half.

 

Moods go up and down, but buffers don’t. Find yours.

 

Good luck,

Ella

 

Song quote: (You’ll get two today! The words always meld together for me, and these two compete each other)

 

“It’s harder than you think, to delay this sadness that creeps up my spine, and haunts me through the night”- These Streets, Paolo Nutini

 

“How am I gonna be an optimist about this?”- Pompeii, Bastille

Sick and Sick of It

I miss the old me. I miss the me who could stand for more than three minutes, slice her own food, dance for three hours straight, and who could laugh without feeling pain. I’m letting myself say this: I really miss that girl.

 

Sadly, she’s no longer with us.

 

This is the new me: I have fibromyalgia. It has been defining me without my permission.

 

Fibromyalgia has become more than just my disease; it is my way of life. No matter where I turn, it stops me. I have to take it into consideration, because if I don’t, there are consequences. It trumps everything else in my life. I once described it to my friend as “a scared infant with serious abandonment issues”. If for even one second I manage to enjoy myself and forget it’s presence, it makes sure that I know it’s still there.

 

On August 8th, 2012, I was diagnosed with fibromyalgia. I sat in a waiting room next to a boy with Cerebral Palsy, a smiling little girl whose mother was crying the entire time, and my mother (while my dad worked out insurance details). It was the first time the truth looked me in the face with a smug smirk. It was the first time I allowed myself to wonder what my life would look like when I walked out of the hospital. It was the first time I realized that I would never be a normal girl again.

 

Now I know that when something bad happens to a person, all they want is to go back to where they were before it happened. I think that with hardships, we tend to warp whatever was before into an amazing place we want more than anything. But was it really always that great? Ever since that fateful Wednesday, all I’ve wanted is to go back to the time before my fate was sealed. But today… today I have really felt, for the first time, that there’s no point going back. If I really wanted to go back to a time when I was happy, I would have to go back to age 7, before my family moved to other side of the world and life itself became one big hardship. Looking back, pretty much since then it’s been one thing after another… it just seems like a lot of bad stuff has been coming my way.

 

So considering that, do I really still long for what things were like before I was diagnosed? It wasn’t really all that great. Neither is now. All I can really hope for is that my future is better. I have learned not to tempt fate, never to say “from rock bottom you can only go up”, because I have discovered there are things more bottom than rocks. Like mud. And snakes. And bugs. I really don’t like bugs.

 

I can’t change my past. My attempts to change the present aren’t proving fruitful. And what do I know about my future? What if I find out that for the rest of my life I will be longing for what I have right now? I’m laughing at that thought, in the dead hollow that seems to be my inside, because why would I ever yearn for this nightmare? But who knows. I just hope I don’t.

It’s hard to express my hopes for a brighter future, because when I say them out loud to another person, the crippling thought of “what if I’m still sick? What if by that point, I can’t get out of bed?” comes back to me and I shut up.

 

But to you, I will express these. Here, on this blog, I will write down my thoughts and my hopes for the future. I love writing, and everyone has told me that I have a future in it too. I have a lot of things to say, and I have written a lot of them down. And now I have a place to post them.

If you have any questions for me, feel free to ask them. If you have words of encouragement, I would love to hear them. If you have judgments to pass, remember that if you don’t have anything nice to say, you shouldn’t say anything at all. I don’t need any more bullies.

Hope to here from you soon,

Be kind,

Ella

Song that’s stuck in my head and magically goes really well with what I’ve written:

“Believe I’ve got high hopes… But the world keeps spinning around.” ~High Hopes, Kodaline