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

Try To Keep Up

 

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My week, summed up very well.

Hey, wait up! Time, where are you? This isn’t fun, I don’t like hide-and-seek. Or tag. Or whatever this is in game form. There’s so much going on, I just have to keep up and keep my head from rolling onto the floor and out the door (and under a bush, until I turn into mush).

I’ll start from the beginning, shall I?

My cousins are visiting. It’s great to see them, it truly is, it’s just time consuming. Over the weekend we went to our second cousins where I played pool for the first time (!) and other fun games fit for our old age. I loved it, though my head hurt me a ton, and I didn’t have time to study for my tests. And…. I was gonna say something…. I swear I knew what I wanted to say…. Shoot. It’s gone. I’m trying to think back to what happened at the beginning of the week. It’s been erased from my memory, apparently.

Oh! Now I remember. We started the day (at school) with triple biology (always a blast), and then we found out about a nasty rumor.  For those of you that have been following diligently, you know that I have already started my driving process (see Colloquial Miss if you want to catch up on that lovely experience). Well, after getting your green slip/form (where they check your eyesight and take the picture for your license), you need to get it signed by your doctor before you can go take your theory test. The theory test is basically made up of thirty multiple choice questions that test your knowledge of the road signs, laws, right of way, and all of those de facto important things. Up until now, you would study for it independently then arrive at the government ministry and take your test. You’re allowed to get up to four questions wrong (meaning if four are wrong, you’ve passed).

Okay, there’s your background information. What we found out was that as of the first of January, they’re changing the whole system. Or in other words, we all need to take our theory tests by January first. A bunch of us, including myself (us being my friends and schoolmates), were already in the process of studying for the theory test. Using either books or online websites, you spend some time learning what each thing means and what the rules are, then you test yourself over and over. Time consuming (keep track of how many times I need to use that phrase to describe my week and I’ll give you a sticker), but not too hard. Out of four chapters, I had finished the first.

We all kind of stressed out, until my good friend J had the idea to call the higher ups and ask them if the rumor is true before we all vomit up anxiety on our textbooks. I apologize for crudeness. She did, and they told her that they don’t know anything, and when prompted for information on who does, they replied that they do. But they “won’t know anything until two days before the system changes”. Essentially, they can’t confirm the rumors but the system will be changing. That was bad thing number one.

All day long, even before the rumor surfaced, I had a head splitting headache. Is that a thing? Can I say that? Too late. It was horrible. Sometimes it’s manageable, but that day I just put my head down in class and tried to block the world out. It hurt so much, I don’t know how to describe it (oh wait, I kind of did. Check out Shining, Elegant, Weightless White). Usually, no matter how bad I feel, I can put up a pretty good front, to the point where people don’t know I’m sick until I tell them. But this time my teachers were asking if I was okay, and I wanted to cry. We also found out that our teachers had organized to take us to go see snow the following day as a fun stress-reliever (it doesn’t snow in our area), and I knew that I couldn’t go because busses make me really sick.

I got home, and studied through the pain because I had no other choice, going back and forth between theory and a year-and-a-half’s worth of biology material. Later in the day I went to physical therapy, where my physical therapist/study buddy and I went over some of my biology terms, and then we talked about his cute kids for the remainder of the time.  Then I got home, and guess what I did? I studied! Shocker!

Wow I just realized I can’t tell you about everything that has happened because it would take me until next week to write all of that, and I don’t have that kind of time. Okay, fast-forward:

1)   My sister collapsed and I had to take care of her until my parents could get home and figure out whether she needed to be taken to the emergency room or not (she was in the end, and then sent home). That’s what I did on the day my friends went to play in the snow.

2)   The biology test went all right for me though it was pretty hard, but it went badly for most of my friends, which was very upsetting.

3)   I had to go to the doctor to get my form signed, and that took a long time that should have been spent studying for theory. The whole process was time consuming.

4)   I was told I need to go on another upsetting diet (my friend D said I should call it a “regime”), this time dairy-free, gluten-free and no processed foods. If anyone feels it’s important, I can explain why at some point. Mainly, it sucks and I hate being sick. It’s so time consuming having to prepare food every time I want to eat something.

5)   My parents bought me a new phone, and I chipped in for about a third of the cost, but it doesn’t work. I went to six stores to try to set it up, then my dad went to five stores to try to set up (time consuming), and he finally found someone who knows how to do it for the added cost of over 100 dollars… Meanwhile, all of the back and forth has messed up my old phone (a cute little red Sony Ericson), so it’s not really working. Hopefully next week my phone will be set, and then I’ll be able to post from my phone! Ah! Though I probably won’t, let’s be realistic here. No mobile version is better than the real thing.

6)   That very bad headache? Still here. It won’t go away, I think it’s going to drive me insane if it doesn’t let up soon.

7)   Hey my lucky number! Ooh, which reminds me, I have to tell you about the theory test itself! Man this post is really long.

Anyway, today J and I got a ride with her dad and went to take our test. First off, the office was in a deserted building, on the second floor, on a landing outside the building, past a bunch of workshops where men with masks on and working heavy machinery turned to stare at us as we walked past. Briskly. Then we got to office, opened the door and a guard jumped up and told us to put our things on the desk while he ran his metal detector over us and stuffed our things into lockers. A pleasant welcome if I’ve ever seen one. Then we were told to sit, and after being sent back to put more of our things into our lockers (including my scarf, because it’s all the rage to hide answers in them nowadays), they finally called my name. J wished me luck, and I went up to the desk. They had me sign some forms, then told me to look at the camera. I suddenly got worried, because I did not want my license picture to be taken then, seeing as I already worked so hard to get a nice one of my green slip. I asked the lady what the picture was for, and said that I had already taken mine, and she went, “You’re pretty, what do you care?” *clears throat* I insisted, and then she told me it was for “identification purposes”. Fine. I smiled. By the way, I saw the picture later and it was not pretty.

Then she sent me into the room, where I was lead to cubicle number 7 (hence the memory trigger) and shown how to work the test. It’s on the computer; I was basically told how to use a mouse to press the “next” and “finish” buttons. J was seated next to me at cubicle 8. I took my time, answered everything very carefully, then went back and counted up how many I thought might be wrong. I got to three, so I decided to go for it and pressed the finish button. I came out, waited with J on the waiting chairs (that’s their official name) and then the same lady who thinks I’m pretty came up with both of our forms and went, “One of you passed, one of you failed”. Such a kind, tactful lady. Now, J and I had discussed what might happen if we went together, and we both came to the conclusion that one of was going to pass and the other one wasn’t, because it’s just been that kind of week. It was so bad that our friend D sent us both a text saying (after I updated them about the new regime), that she doesn’t know what to say but she thinks “we should commune and create a cry session for one of the worst weeks in 2013”.  J said, “Spot on”, and I declared that “I concur. It’s a date.” J said she would laugh if she fails, I warned her and her dad that I would cry.

So when she said that to J and I, we looked at each other and turned to our forms, and she started laughing before I had time to process the little word on my form that let me know that I passed. The second we made eye contact we started laughing hysterically because we were right, and then my favorite lady asked us to leave because we were being disruptive. We grabbed out things and headed for the door, where the guard stopped us and gave us his advice on when to come again and what website to use to study. He was actually sweet in the end, surprisingly. We quickly walked into the building from the landing and left.

I’m glad we’re such good friends that the situation wasn’t awkward. I was sad for her, she was happy for me, and mainly we were both exhausted, tired and angry about what a bad week it’s been. Luckily everyone is going there to take the test in the next few days, so she has plenty of opportunities to go again with someone, and then I’m sure she’ll pass because she did eleven practice tests the night before and passed all of them, so it was really just a fluke that she didn’t pass the real one. And I know she’s reading this, and laughing. Go get some food and stop doing more practice tests.

I was so tired last night that when I wrote my checklist for this morning, this is what came out:

–       Green slip

–       Wallot

–       Phone + id

–       Wallet

Yeah, it was that bad. I showed it to my dad this morning and he laughed at me. Understandably, I suppose. Ooh, and I scheduled my first driving lesson for next week!

Wow, I’m at two thousand words. Maybe it’s time to stop talking. Maybe I should edit some of this stuff out. But we all know I won’t.

Yours truly,

Ella

Song Quote:

We have paved these streets with moments of defeat. –These Streets, Bastille

 

P.s. Who got the meatball reference?