Silent Night, Peaceful Drive

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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

An Ode to the Changing of the Clocks

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It’s cold now. Cold means big sweaters and heavy blankets, which mean safety. I bought new slippers, in honor of the changing of the clocks. They mean, I know these look like they belong to an 80-year-old woman, but they’re comfy as heck. Cold means tea, and tea means a burnt tongue, which doesn’t have any enriching value besides reminding me of winters past.

It’s earlier now. Early means I wake before I need to, and fall asleep before I’m supposed to. At least it used to be that way. It isn’t anymore, because sleep and I are on a break. But it does mean that as I lay in bed staring ahead, I see the raindrops (on roses and whiskers on kittens) caught on my window, and the smell of it seeps through the walls. Do the raindrops look like tear drops as they cling to my face?

It’s darker now. Darkness means comfort and calm, and more hours of it should mean less time spent in a frenzy. Because frenzy leads to anxiety and anxiety leads to pain, so really I’m sitting here praying to the darkness: take away my pain.

I latch on to the hope that comes with change. It was fall. Now it’s winter. This was change. May the change bring with it all the good I wish for during my waking hours of staring at raindrops.

Yours truly,

Ella

It’s cozier now, and cozier leads to winter playlists. I put together a playlist for this season (yay!), called ‘Changing Clocks’, that you can find on Spotify (click the link or type ‘Changing Clocks’ into the search bar, it’s the top result, and then you can follow it to see when I add new songs).

Song Quote:

If the rain keeps falling and you can’t see the tears in my eyes, they say the night is daunting but we all need somewhere to hide. –It Could Be Better, Lewis Watson

P.s. Comment below if you caught the Friends reference in here!

Is This My Destiny?

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For everyone else, this last year of high school is a step they need to go through to get to the brighter beyond. But for me, with every passing day, the anxiety grows. When I got sick in 9th grade, I thought I would be better by 10th. When I wasn’t, I prayed it would be gone by 11th. When it wasn’t, I closed my eyes and pretended that there just wasn’t an option of me not being better by the time I graduate.

But it’s getting closer and closer, and I’m staying the same and the same. Trapped in the same constraints, suffering from the pain and loneliness, and quivering with anxiety. Because when I imagine my future, I am healthy. When I think about choosing my next path, I am healthy. When I think about colleges, dating, careers… I am healthy. But I am not healthy. So what’s going to happen?

Up until now, I haven’t let myself seriously consider what will happen if I don’t get better by the end of 12th grade. But the last few days, and today especially, I can see it crystal clear. My friends will move on. They’ll still love me, still support, still care for me (because they’re awesome), but by the nature of things, they will move on. They’ll be living farther away from me, be very busy, and probably be struggling with adjusting to their new environment. Being the kind of friend that I am, I’ll try to be supportive, listen to them and be empathic to their struggles. But inside I’ll be thinking, damn, I wish I had your issues.

I’ll be feeling lonely, because I’ll be seeing them very little. Conversations will probably take place over the phone or via text. Weekends they’ll probably want me time, which is legitimate, they’ll be tired from a long hard week, and anyway, there’s not much I can do anyway. I get tired, you see. I’ll try my hardest not to become a burden to them.

But I’ll feel lonely. And they’ll move on.

So how will I fill my time?

I can come up with a few things to do, my teachers at school are trying to help me make plans. It just sucks, because they aren’t the plans I want to make.

I can picture myself healthy so easily. How much I would bloom and love life. It’s not like I think life would be perfect, I know I would still have problems, but I would just feel so free. This happiness, that I have inside that is beaten back every day as I feel pain and every night as it keeps me from sleeping, I would finally be able to call it my own.

I need to find a way to insure that even if I’m not better I won’t let myself go, because that would be so easy. I can feel the temptation already. Nobody else knows how hard it is for me, how much goes into just putting a smile on my face, into getting out of bed in the morning. I’m tempted to not get out of bed. It would just be so much easier. Life would hurt so much less. I wouldn’t be looking at everything I can’t do everywhere I turn. 

Isn’t that just really what I want? For it to hurt less? It hurts so much. I talk about the emotional part of it all the time, but physically it’s just too much already. How much longer am I supposed to be able to withstand this attack? How long is it going to be until something in my body just fails? How long is it going to be until my inner strength just runs out? How many more tears do I need to shed in order to get through a day? How many more times do I need to sob and ask god what I ever did to deserve this until I can get some respite? HOW MUCH MORE DO I NEED TO SUFFER?

I can’t take much more. Every day this smile feels a little bit faker. Every day this laugh feels a little bit more forced. Every day this will power gets chipped at a little bit more. Every day my eyes grow heavier. Every day I crave affection, support and reassurance more, but the level I receive remains the same. Every day my breathing becomes more labored. Every day I just try to fill the void. Every day the doubt grows infinitely. Is this my destiny?

Ella.

Song Quote:

Give me love like never before, cause lately I’ve been craving more, and it’s been a while but I still feel the same. –Give Me Love, Ed Sheeran

I’m Going to Go with Passion

I’m having trouble concentrating on life because all I want to to do is write the story I have in my head right now. I can’t even focus on writing a post without getting distracted and wanting to write VIQ (I don’t want to share the whole title just yet, so just initials for now).

This isn’t what I usually write on here, but I’ve actually come to the conclusion that maybe this too will interest you. Because when you have a lot of pain, like I’ve had the past few weeks, you don’t get to do what you want to. You aren’t free. All I wanted to do was write but even typing hurt my hands too much. Now that I’ve regained functionality I have this drive inside me to let my creativity run abound and get this story from my head to the pages. It’s not a fire, even though some writers describe it that way, but the words are definitely burning to get out. I think I’d call it… Obsession? Urge? Passion. I’m going to go with passion. I have to admit, I’m really excited about VIQ. It’s different than what I usually write and all of the previous novel ideas I’ve had. It’s kind of a fun story that observes the way the whole world is so small these days, and how we can all be connected to the exact same thing despite the distance between us. It’s also a huge mash-up of all of my favorite daydreams to escape to. For once it feels nice not to write about the things that are sad and hard for me. Not that that is the only thing I write on here- there are plenty of things that have to do with normal life and happier topics. But still, in this novel, no one is sick and I like that.

So here’s to VIQ and huge breakthroughs,

Ella

Song Quote:

If you could read my mind, love, what a tale my thoughts could tell. -If You Could Read My Mind, Gordon Lightfoot Do you feel this passion too?

My Relationship with Taylor Swift

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As far as relationships go, Taylor Swift’s and mine was a pretty happy love story* for a bunch of years. I was about eleven or twelve years old when I started listening to her music, and I was enchanted. I would memorize all of the lyrics, practice the tunes until I got them just right, and even make up dances to my favorite songs. There were times when the two of us were inseparable, and I would spend hours trying to figure out the coded messages she slipped into her lyric books.

When “Speak Now” came out, I bought my copy right away and took to pacing up and down my living room while listening to it. I had just started at a new school, and I remember being on the bus when a few girls up front started singing “Sparks Fly”, and being overjoyed that I too knew all of the lyrics. When someone said that all of the songs on the album sounded too similar, I defended T-Swizzle’s honor and gave them a long speech (well, it was more of a soliloquy) about how her songs are well crafted, ingenious and beautiful. I was a Swiftie to the core.

But then, entirely out of the blue, in the fall of 2012, Taylor Swift and I had a falling out. It was dreadful, and I was dying to know if it was killing her like it was killing me. I don’t think it was though. Taylor Swift once told me that to be her friend all I had to was like her and listen, and I was failing royally at that. I was disappointed in her new album, “Red”, though for a short period of time in my younger years red was my favorite color. I decided she was a bad singer who was fairly hypocritical and fake, and who should have kept her beautiful curls whole.

The thing is, our falling out wasn’t entirely out of the blue. In truth, it had everything to do with the summer that preceded said fall. I was fifteen in the summer of 2012, and I was diagnosed with fibromyalgia while at the same time the growth I had found on my back was declared cancerous. I was intensely upset and dreadfully angry, but mostly I was confused. Despite that, I had made a vow to myself many years earlier that no matter what personal hardships arose, I would never, ever, take out my anger on the people around me. 

I retreated into myself, and for a little while lost touch with peace and serenity. “Red” came out that October. Are you starting to see the shockingly obvious connection between my emotional state and the condition of my relationship with Taylor Swift? I kept my promise; I didn’t take my anger out on the people around me. But I did take it out on Taylor.

Taylor is blissfully unaware of my existence, because despite my sudden loathing of her I never spread a bad word about her. There was no trash talk on her social media pages, hateful comments on her videos, or mean emails that came from me. I did not turn my words into knives and swords and weapons. My issues with her were personal, and only my family and closest friends knew of our sad, beautiful, tragic love affair.

If you allow me to quote her song Fifteen, “when you’re fifteen, don’t forget to look before you fall, I’ve found time can heal most anything.” I was fifteen, and I had been in a lot of lonely places, but few were as lonely as being isolated by an illness I had, and have, no control over. I tried to be fearless, I tried to breathe, but I was coming undone despite being tied together with a smile.

The song that led me back to positive terms with Taylor is “The Lucky One”. In it, she says “they tell you that you’re lucky but you’re so confused, cause you don’t feel pretty, you just feel used and all of the young things line up to take your place… you wonder if you’ll make it out alive”. It’s an honest song, and it reminded me that Taylor is a person, just like me, who also goes through phases and who has also has hard times.

So, Taylor, this is me swallowing my pride, standing in front of you and saying I’m sorry. It has been two years since then, and my state of shock** and anger turned into a state of sadness, one I haven’t fully gotten out of yet. Time has passed, and I know I had no right to be angry with you, to criticize you, or to pass judgment on your hair. Your hair is beautiful just the way you like it. You do have a good voice, and I do know all of the lyrics to all of your songs, and I do still appreciate you and your music (like, a lot).

I know there is nothing you do better than revenge, but please, forgive me? Can we begin again?

I have adopted the motto of “live and let live”, and though I still feel as though I have personal relationships with certain singers because I connect with them and their feelings through their music and lyrics, I no longer feel as though they have actual obligations towards me. They don’t owe me songs I’m going to like. I believe that they should write what they need to write, and if I don’t like it, I can stick to listening to their older material that I do like.

I’m writing this for several reasons: a) I wanted to apologize to Taylor Swift and b) the nature of our relationship demonstrates the process I have gone through since the two separate and inconveniently overlapping diagnoses of two years ago. Before them, though not carefree, I still had hoards of energy with which to pace rooms endlessly and “fangirl” hard. During and after them, I felt trapped in a dark and confining cage and my soul was banging around between the bars. My life was in upheaval. As time passed, though my physical pain did not diminish and has even worsened, I have gained perspective and a personal understanding of pain and its aftermath. I have become a better person, who is well equipped to deal with hardship and is used to gearing up to tackle each day as a separate obstacle. The anger has mellowed out, basically. And now I just wish as many people happiness as I can, and that includes Taylor Swift.

 

Love,

Elisheva (aka Ella)

 

Please help me get Taylor’s attention!!! It would mean the world to me if she read this, and you can help it happen: tweet #TaylorReadThis and include a link to this page (or retweet mine), and maybe if enough of us do this she’ll see it :)

 

*Italics are either titles of songs interwoven as words, lyrics from songs, references to things she wrote in her lyric books or clever adjustments of lyrics to fit the sentence and context.

**play on the song called “State of Grace”

Proportional Pain and My Guilty Genes

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Scrabble doesn’t come with a question mark, so we’ll have to make do without one

There once was a girl (A) who didn’t pass her cheerleader tryouts, and she was upset. There was also a girl (B) whose boyfriend dumped her, and she was upset. But then there was a girl (C) whose friend was dying of cancer, and she was upset.

Before us we have three (fictional) girls, and each is upset. Who, in your opinion, is most upset?

Please don’t answer that because it’s a trick question. I believe that it’s not fair to compare people’s pain because each is suffering in their own right. So yes, one situation seems way more serious than the others, but does that mean that the other two aren’t upset and don’t have a right to be? No. The fact that one person is worried about cancer and the other is worried about boys doesn’t mean that the one worrying about boys isn’t distraught and in pain, and you can’t discount that.

That said, I am human and sometimes I fail at upholding my own high standards. I look at this girl who is throwing a tantrum because she didn’t get the teacher she wanted for a certain subject and can’t stop thinking about girls in many parts of the world who have to fight to get an education, and often don’t win. I want to scream at her, “just appreciate what you have!”

But then those thoughts lead me to one of the most depressing inner conversations I regularly have. I know I’m suffering, and I know my pain is real, but at the same time look at the world, look at how many people live in terrible pain due to poor hygiene and distance from medical help, and see how many of them continue living completely normally. In comparison, I’m just acting like a baby. But those thoughts don’t make my pain go away and it still gets in the way of me doing everything people my age do.

So when I have these conversations, I force myself to the conclusion that it is important to keep things in proportion and not feel too sorry for myself, because compared to some my troubles are not that bad. I do think you need to keep going and try to pick yourself up, and that’s what I do. But there is also a real reason for sadness, and it’s okay to let yourself feel it.

When someone I know is suffering from a horrible headache, I bite my tongue and never let the “now you know how I feel all the time” escape. But I always think it. It’s not that I think their pain is lesser because it’s a one off thing, it’s just that it gets frustrating when people have no way to understand what I’m going through. I want him or her, for just a minute, to try to imagine what it’s like to feel what he or she is feeling every day and how hard it would be to manage.

Then I feel guilty. For not focusing solely on the person I’m with, but mostly for treating myself like I’m the top-sufferer, like I’m the most unfortunate. I promise you I do not forget how lucky I am to have everything that I have. But then after feeling guilty, I feel even guiltier because it’s almost like I just betrayed myself by my sort of accusation that I’m just exaggerating.

It’s exhausting.

So to girl A I say that there will be more opportunities in life and this way she’ll have more free time to hang out with her friends. To girl B I say that he’s a fool for breaking up with her and if she ever needs a wing-woman I’m her girl. To girl C I tell her how sorry I am and offer her my shoulder.

I allow myself only a minute to contemplate how it seems no one is ever that happy.

 

Yours truly,

Ella

 

Song Quote:

I find it hard to take, when people run in circles it’s a very, very mad world. -Mad World, Tears for Fears

 

Next Week:

My Relationship with Taylor Swift

Get ready to tweet along with me using #TaylorReadThis, because I need your help getting her to see it! So as of next Sunday when I put it up, we’re going to bombard twitter with this hash tag and the link to the post and try to get her attention. You with me?!

Taking Your Chronic Illness on Vacation

I’ll admit that I was very naïve to believe that my chronic illness needed a vacation just as much as I did, and that it wouldn’t bother me while I travelled with my family. Let’s blame it on my youth, shall we? I sobered up approximately two minutes into the flight when I had to fight the urge to jump off the plane and hide somewhere (anywhere). I didn’t. I figured out a few survival tactics and I’ve broken them down for you here.

Step 1

Chase the weather that is best for you. For instance, if rain is bad for you, choose to travel to a place where it isn’t raining.

I didn’t exactly do this one… So one afternoon we were by the water, the sunset was beautiful and we considered it a general success.

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But then as we were driving back to where we were staying it started to rain, and when I say “rain”, I mean rain. It was so heavy we couldn’t even hear the thunder over the noise the rain was making as it hit our car. Besides the very real fear that we would be in accident, I was also suffering physically. We ended up pulling over into a gas station (along with twenty other cars) and waiting it out, and thankfully we made it home safely. So besides the fact that I can now say I have seen real forks of lightning (that were terrifying and awesome at the same time), I would still advise others to chase the weather you like most. Rain is not mine.

Step 2

If you need to eat certain foods, bring them with you. I’m used to eating many fruits and vegetables and things that have a lot of protein in them, and it was hard to find the right foods while we jumped from place to place.

I did actually do this one! Sort of. I’m used to adding a spoonful of chia seeds to whatever I have for breakfast and without them I suffer, so I brought them with me and it worked out very well. But other than that I mostly ate starches, and was happy to get back home with its variety of foods to choose from.

Step 3

Comfortable clothing, comfortable shoes, and a comfortable place to stay are key for avoiding excess pain. I know that a lot of the time people prefer not to spend too much money on comfortable hotels or apartments for rent, but if you’re going to need to return to the place multiple times during the day to rest, it should be as comfortable as you need it to be.

In the span of 11 days we stayed in 6 different places, so clearly the level of comfort ranged from “not at all” to “hey, this isn’t bad!” as we hopped. But as the comfort level went up, my pain level went down. Also, a word to the wise, the middle seat in the back row of a car is horrible and it’s best to not end up sitting there for long drives (even if you get a great view out of the car, like in the picture below).

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Step 4

Adjust your expectations and take things as they come. Yes, it totally sucks to be in exciting places and not get to see and experience everything you might want to, but how much would you really enjoy if you were in pain the whole time?

There was one day, probably the worst day pain wise, when I was in the place we had rented for the entire day. I went out for only two hours, and they were absolute torture because I just wasn’t up to it. Did it suck? Yes. Was it what I had imagined I would do? No. Was it what needed to be done? Yes. If you see that you are up to doing things then go for it and enjoy yourself, but if not, give yourself a break and don’t wallow in sadness over the things you are missing out on.

Step 5

Choose to spend your energy on activities you know you will enjoy. I refuse to disclose whether this was shopping for me*. I refuse, I tell you. It’s no use badgering me about it. Shopping is fun, okay? No, I’m not defending it, I’m just saying. You know what, just leave me alone! Like you can judge, you wear clothing too.

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Step 6

Be open to letting the person/people you’re traveling with do things without you. It’s their vacation too, and though maybe they are really nice and don’t want you to be alone or feel left out, encourage them to branch out on their own and do things at their speed. It’s their vacation too. That way they won’t feel like they’re being held back and when they are with you they will be less likely to lose their patience or be snappy.

Step 7

Once you’re out somewhere, try to make the best of it. Often you’re not in a situation where you can get back to your room very quickly and there’s nothing you can do about. In these cases, don’t drive the people you’re with crazy by complaining. Try to find at least one thing about the experience that you do like, and focus on that.

If I started telling you about all of the times I did this I would basically be giving you the rundown of every day, so just take my word on it. One time in particular I wasn’t feeling well as we were beside a beautiful lake, so I went into the convenience store nearby and bought a jumbo bottle of bubbles. It kept me busy and happy for an hour, and the bubbles looked stunning on the water!

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Step 8

“Bring only what you need to survive!” Contrary to how this sounds, I actually mean you should bring the things that help you feel better. This may mean you bring heating packs with you and request to have a microwave wherever you are staying, or it may mean you bring distraction: books, a tablet or a computer, music and whatever else helps you. The words in bold are actually a quote from Spaceballs (the movie), when the main woman is told by the main man to bring only what she needs to survive with her. The two of them are lugging her royal highness’ matched luggage through the desert, and of course he finds out she packed her humongous hair dryer.

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Step 9

Laugh. Seriously just laugh it off**. Not only is that laughter good for you and can actually make you feel a little better, it’s also just a good way to survive hard situations. A sense of humor always makes everything better!

 

I hope this helps you and please leave a comment with your own tips so others can gain from your wisdom too!

Yours truly,
Ella

Song Quote:
Go ahead and just live it up, go on and tell me your path, and hold on. –Even My Dad Does Sometimes, Ed Sheeran

Next Week:
Proportional Pain and My Guilty Genes

*I only went shopping twice the whole time, it’s not that bad!
**Get it?! Oh man I’m so punny…. I crack myself up.