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

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I’m Going Home

 

antique-art-curtains-home-photo-Favim.com-136368

Not my window, but a dreamy window indeed

 

I can totally do this.

The past few days have been filled with pain and the past few nights have been filled with consciousness. I am tired and tired of studying. I am sick and suffering, but I can do this.

Two tests left. My window is open to let the cold, crisp air in and onto my face, and every now and then I remember to breathe. I have a playlist of Coldplay, Maroon 5 and Beyoncé to keep me from getting too bored of my material, and a yellow highlighter that matches my dried mango (god’s gift to man).

A classic study set-up.

Not only am I motivated and uplifted by the light I can glimpse at the end of the tunnel, but I now have something to look forward to: I’m going home. I moved away from my hometown when I was 7, and in many ways where I live now is a larger part of my identity. It’s where my family is, where most of my friends are, my school, and my past ten years of life. This culture now feels as much an inseparable part of my identity as the culture of my early childhood.

But still, the thought of going back for a visit makes the words “I’m going home!” shout in my mind, bang around and jump up and down (primarily as I try to study). For once I have something to look forward to, and by golly, is it uplifting.

I just feel like I can do this, I can make it through these tests and then go home. The first time I went back to visit was many years after we moved away, and at the sight of my neighborhood I began to cry in the back of the cab. Those tears were because I missed it all and I wished we’d never moved. The tears I’m sure will come this time will not be the same. I’m no longer a 7-year-old girl. In a few months time I will turn 18 and I will need to accept that the fibromyalgia will become a part of my adult life too.

This time I will cry because I really need a break from the reality of my life that is so often sad and frustrating.

This time I will cry tears of joy, because despite it all I love the person I have become and I know I would not be the same if we had never moved away.

This time I will cry, and then leave the tears aside and focus on being where I am. The Dalai Lama said that there are only two days that do not exist: yesterday and tomorrow. In my life, my yesterdays always carry over to my todays (in the form of a headache) and I can’t help but worry about all of my tomorrows.

This time I will cry.

Yours,

Ella

 

Song Quote:

Millions of miles from home in the swirling, swimming on, when I’m rolling with the thunder, but bleed from thorns, leave a light, leave a light on. –Midnight, Coldplay

 

Stay tuned for part 2! I plan to write all about my trip.

Part 1: I’m Going Home

Part 2: I’m Home!

On Self Defense and Being Awkward

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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!

Chronicle of a Rereader

As little kids, we all get used to hearing the same stories before bed every night, and most of us love it. Somewhere along the way, when we learn how to read by ourselves, many stop enjoying reading something they’ve already read again. I am not one of those. I love rereading books.

I form an emotional connection with every (good) book that I read and with the characters in said book. I usually become super invested in them and I feel like I know them. My sister will never let me live down the moment when I came downstairs crying because a character in my book died. It’s not the crying she won’t let me forget. It’s my explanation for why it was so horrible: “I’ve known him his whole life!” When I reread a book, I get to spend time with these characters that I loved so much the previous time, and it never seems to bother me that I already know what happens.

Usually when I reread a book I also notice things I didn’t notice before. Be it a comment from a character that seemed insignificant (but isn’t) or a description of a place that I overlooked, every time I read a book the story becomes a little richer for me. The best example for this is, of course, Harry Potter. Don’t look surprised. You all knew this moment was coming.

I have read the entire Harry Potter series (which consists of 7 books), 7 times. That’s 1,084,170 words in the whole series x 7 = 7,589,190 words. I won’t talk about this for too long, because if I let myself get into it this post will be 18 pages long and consist almost entirely of gushiness. BUT, I will just say that every time I read the series I get something new out of it, and with every reread I noticed additional clues JK Rowling strewed throughout (which just means that she’s a genius, not that I’m oblivious). The most recent reread was just a few months ago, and I had thirty pages left of the sixth book, so I was sitting in my school lobby and trying to finish it. But, a character dies right at the end, and I always cry hysterically when any of the characters die. Just picture this scene: I am curled up in a ball with the book held in front of me, sobbing, and the bell goes so the lobby starts to fill up with students. Mainly people just walk by and go “Oh Ella!” but the lovely Beatrice comes to stand in front of me and starts to laugh. “Sixth time?” she says. “Seventh,” I correct her. True friendship.

harry-buona

The reason why I wish my school looked like Hogwarts…

Beyond the emotional connection I form with characters of a book, there is also an element of my own experiences over the period of time that I’m reading it. For instance, when I read “Tell it to the Skies”, a book by Erica James, I would meet a few friends in the morning before school started and update them with the new developments in the storyline. So now, when I reread it, I remember the feeling of them all waiting to hear me speak (which didn’t happen often during that time) and of sharing the excitement with them. I can use books to slip back to different times in my life and revisit them.

But alas, we cannot forget one more important factor here: whether I have any new books I feel like reading. Sometimes, I just want to read a story that I know is good and that I know I like. Like a few weeks ago, when I was worried about something medical that was creeping up and creeping me out, I chose to reread a fairytale book I love because I knew I would be able to take comfort in escaping in my mind to that other place. Sometimes I feel too not well to even read, but most of the time, if I really don’t feel good, I can read a book and just escape. Books are amazingly therapeutic, and rereading them is too. I hope you enjoy them as much as I do.

 

 

Love,

Ella

 

Song Quote:

Drench yourself in words unspoken. –Unwritten, Natasha Bedingfield

 

Announcement:

A few months ago, Julie Ryan contacted me and interviewed me for her fibro warrior segment. I just wanted to let you all know that for the first time she’s opening it up and inviting you to contact her and share your own story! Don’t miss out on this opportunity, you can find all of the info here: http://countingmyspoons.com/2014/08/fibro-warrior-share-story/

Good luck and enjoy!

Okay, What Now?

 

 

Stick Figures

 

I want to reach out my hand and participate, but before my hand can move a fog wafts before my brain and all optional activity halts. I stop thinking, stop moving, and stop feeling. Then, surprise surprise, I feel disconnected. For the past two weeks, it has just felt like I’m going through the motions but I’m not really there. Though feeling disconnected can happen to anyone, this feels like fibro fog. I hate it.

The only times when I’ve felt present in these couple of weeks has been while driving. I’ve had four driving lessons so far, and I love it. When I’m driving, I have to be present, and nothing else exists in my brain except the steering wheel, the pedals, the driving teacher and the road. And other cars and pedestrians, I guess. But it’s like there is nothing wrong with life, nothing sad or hard going on, no headache even, because I am completely focused on being alert and aware of my surroundings and in control of where I’m headed. It’s a welcome change, being so wholly focused on one thing that I can’t feel pain.

Sometimes I just don’t know what to do with myself. Lately I end up in these situations where I get to a certain point and I go blank; what now? Like talking to a group of people, for example: we’re talking, getting along, I feel happy to be with people, and then suddenly I just feel my brain being wiped clear and I’m vacant inside. I’m looking at the people around me, at my friends, and I just don’t know what I’m supposed to do next. Do I say something? Should I get up? Should I stuff food into my mouth? I usually do the latter, but it has become increasingly hard seeing as I’ve been put on a gluten-free, dairy-free, processed-free diet for medical reasons. You don’t really get to have comfort food when you’re on a fun-free diet.

I told my friend about this void that appears within me, and about how unmotivated I seem to be (notice the missing post that should have shown up a week ago but that I never wrote), and she told me that she understands and maybe I need to give myself a break. So I did. Well, sort of. I did whatever homework was for the following day, but didn’t plan ahead and do the opposite of procrastination (which is what I usually do because I seem to have been born that way). It helped a little, mainly with feeling guilty about not getting things done; when you decided not to do it, it’s less bad than just not having the inclination to do it. That said, the feeling still showed up today, and I feel it looking back on everything that has gone on. I still feel detached.

I’ve decided it’s just a defense mechanism, and it will go away. I’m sure everyone gets this way sometimes. We wouldn’t be human if we didn’t have a wide range of emotions, and feeling disconnected is somewhere on that range. This is life: I embrace it. There are going to be ups and downs. Like hills. Which I have mastered. Ooh I have a good metaphor similie thing!!! I know when to press the gas, and when to use the breaks- I know how to take care of myself. Ah get it?! Oh my, I am so so proud right now. Just saying.

Also, Tim over on tcopelandfilm/storiesnotworthreading wrote something that was inspired by my blog. I suggest reading our discussion at the bottom of the page because it actually made way more sense to me after he replied to my comment and explained where he was going with it. Thank you, Tim, it meant a lot to see that what I’ve been writing has been able to inspire someone else.                                                http://storiesnotworthreading.wordpress.com/2013/12/27/hinged-lives/

 

Yours truly,

Ella

Song Quote:

I took a walk on a Saturday night, fog in the air, just to make my mind seem clear. –My Fault, Imagine Dragons

P.s. It’s been forever since I sat down to write something. This feels good. Anyone else notice that I’m getting frighteningly close to a thousand followers?! Technically it doesn’t count until 1001, because I do follow myself, but 1000 is just a prettier number.

 

 

I’m Scared

Okay world, here’s your chance: what are you trying to tell me? Us? What’s the idea behind all of this? Third car accident in two months. Is there a reason? A message? Because if there is, I’m not getting it. I’m just getting that my family is getting hurt, and scared.

We’re okay. I mean, we’re not, but none of us are in the hospital, or seriously hurt. I just feel my sister’s pain so much. She and my other sister were driving to school six weeks ago and were rammed into from behind. Both were mildly hurt (the middle one has fibromyalgia too), but mainly the oldest suffered a lot from whiplash. This was her first time driving to school since (the middle sister wasn’t with her this time). And again, rear-ended on the same stretch of road as last time.

I just spent the last hour with her and my mom. We were trying to calm her down. She couldn’t stop crying. I hope her neck won’t have any permanent damage at this point. She and my mom just left for the doctor’s.

We’ve been having a hard time as a family. The middle sister and I both have fibro, my dad is always travelling for work (he was abroad for the previous two accidents, and now this one too), and now with all of these accidents happening… Oh, and my mom has shingles right now, to top it all off. My oldest sister was only just starting to regain some sense of normalcy, of being able to move about. I’ve been under a lot of pressure. It’s test season at school, I have all of these tests on everything I am supposed to have learnt in the past two years, back to back, and I’m starting to buckle under the pressure.

So what’s the point, huh? Why is this happening? Because clearly, I must be missing something. If the world wants to say something, it can just frickin’ say it already. Stop hurting my family. I can’t deal with this anymore, it’s too much, I just can’t. My friends are stressed out about tests. That’s it. Why am I the one that has to have all of the bad things? Sick self, sick sister, sick mother, car accidents… When is it going to end? Is our luck going to run out?

I’ve been walking around for the past few weeks being afraid to say good-bye to parents. I’m always scared it will be the last time I see them. The night my dad flew abroad a week and a half ago, I didn’t sleep. At all. I was too scared. There was a storm a few days ago, with thunder shaking up the house. My mom left to go to the doctor, leaving me in charge of the kitchen where we happened to be cooking up our own storm. I was left alone in charge of everything that was cooking at the time, frying this, measuring that, checking on that, stirring whatever. The thunder was so loud, I was in such a frenzy multitasking, I just suddenly got this feeling that something really, really bad was happening, right at that second. As my mom was leaving, my sister was trying to get the other car to start so she could drive herself to the physical therapist’s office, a five-minute drive. The car alarm went off, and it wouldn’t stop. It was the siren, the thunder, the sizzling, and I felt like I was drowning. Drowning in worry, I guess.

I didn’t burn any of the food. My sisters complained that the chicken was a little underdone. My family made it home okay. My dad is safe, far away at work. I told myself to calm down. I wrote in my diary that I’m really scared something is going to happen to one of my loved ones, and told myself that now I could let it be and try to move on. But then I was talking to my friends, and they all said that even with school pressure and things, they still felt like it was going to be a really great week. I was the only one that did not agree. I couldn’t help it, I was upset and worried, still. I told them I had a bad feeling about the week.

Then today I woke up, and my mom pulled me aside as I headed to get some breakfast and whispered, “she was in another car accident”. She whispered because she could barely bare to say the words. Now I’m alone at home, sitting in my room and writing. I actually woke up today, with this feeling that maybe I could make this week be a little more fun. I decided to have a dance party, but who can dance on an empty stomach?

So I never had my dance party. All my energy went to my sister, I have none left right now. I still have to go to school, and I have art later. I’m exhausted.

I don’t know why this is happening. I’m not sure I ever will. Just please, please, whoever makes these decisions, take pity on us already. We’re good people. My parents, my sisters, myself – we’re all very good, decent people. We don’t deserve this. I know no one does, but still, we really don’t. We have enough troubles already.

We don’t need more.

If you’re religious, any kind of religion, pray for us. If you’re not, just hope in your hearts for my family and me that we’ll be okay. I’ll take any help I can get at this point.

I’m scared,

Ella

Song quote:

Alice, there’s no reflection in the looking glass, you wear your party dress but there’s no party to attend… She’s looking for a way to escape and wondering whether she can find a way out without being seen… There’s no one left in paradise, just a pack of cards without the hearts. –Alice, Mononoke

Sharing Is Caring

That’s what I have been taught my whole life. It was the mantra repeated throughout my childhood, and is the nostalgic phrase thrown out in my present. I wholly believe in it.

I’ve had a sharing kind of day. My dad lent me his sweater, I brought some food from home for my friend, another friend shared some of hers with me, I shared my scarf and hat with others who were cold throughout the day, I received yarn as a gift from a friend for whom I knit a hat, and I got a ride home from someone because it was raining. It was all really great, and it got me thinking.

So, sharing is caring, right? We’ve established that. If so, why can’t I share my pain? Why am I the only one of my friends who’s suffering every minute of every day? Why am I the only one who has to worry about her health and her treatments all the time? Why am I the only one who isn’t healthy enough to participate in things?

It’s not that I want my friends to feel like this. I wouldn’t wish Fibromyalgia on anyone, ever. It’s just that I’m frustrated with feeling so alone in it. I can talk about it with my friends, especially a couple of them who are really there for me with this stuff. My class knows what I have (after a really messed up year of it staying a rumor despite the fact that I told everyone what it was). I talk to my parents; they know exactly what I’m going through. All of that is great, and not to be underrated.

But no one feels what I feel. No one knows what it’s like to have this pain, to feel so sick all the time. Anyone who doesn’t feel what I feel the way I feel it would have no way of ever understanding what it’s really like. And that makes me all alone. People care about me, but I can’t share this. I’m the one who wakes up and goes to sleep this way. I’m the one who sits in class with pain travelling through her body. I’m the one who stands talking with people, but is usually actually fighting a migraine, knee pain, exhaustion and more to do so. I’m the one who’s hurting. 

There’s really no solution to all of this. Even this blog isn’t the solution. It helps a lot, don’t get me wrong: seeing positive comments and a show of appreciation for what I write makes my day a lot of times. But it doesn’t take away the pain. I try to keep up with normal life, with the things people my age are doing (by the way, the driving license picture ended up coming out great!). But at the same time, I’m also a really old person: I can predict rain. C’mon, no one my age is supposed to be able to do that. My knees swelled up last week, while my friends were all on vacation in locations around the world, because the weather was changing. And yet I still can’t figure out when to bring my umbrella.

I’m tired of hurting, and of feeling alone. Just tired of it.

Yours truly,

Ella

Song Quote:

It’s taken me a while to tell you, exactly how I feel inside. The words, they may seem simple right now, but they took me a while to find. –Be Alright, Lucy Rose