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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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!

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