me before you (additional material)

Hi, all! It’s been a while, and while I’ve published more articles than just this one in the past several months, I really wanted to put out some additional material for the article that came out in June:

Why the Message of ‘Me Before You’ is So Dangerous

It’s been shared around 30,000 times now, and I’m so glad the word is getting out about how awful this film is – but here are the bits that I had to cut from the article for space. Let’s go.

  • “Do you know the video game Life is Strange?” Madeleine asks me. I don’t. “There are two characters that attempt suicide in the game. One of them is an able-bodied sexual assault survivor and the other is a quadriplegic woman. In the former situation, the game puts stress on the player to save the able-bodied character. In the latter, there’s all this emphasis put on how much money the disabled character is costing her family. After each chapter of the game, they show you what percentage of players chose which option. The majority chose to assist in the suicide [of the disabled character]. I was absolutely shocked at how different their morals were when applied to a disabled body.”
    Madeleine on Life is Strange
  • “This is about the complete devaluation of disabled lives,” says Alice Hewitt (silversarcasm.tumblr.com). “I feel so deeply uncomfortable and disgusted with how abled people are focusing on their own tears and emotions, how disabled people are just like f***ing tragedy vessels. I get so many people sending me messages like, ‘No, you don’t understand! The true message of the film is to live boldly and fulfill your potential!’ No, it’s not! That’s the message for abled people. The message for disabled people is ‘kill yourself so that abled people around you can profit from your death’.”
  • “I really, really do not make Nazi comparisons lightly,” says Hewitt, “but creating propaganda videos encouraging the idea that disabled people are burdens, and it’s better for everyone for us to die, is absolutely something that happened in the Third Reich.”
  • ^ She’s right. In the film, Will doesn’t want to “hold back” the people who love him. “I don’t want to become a burden” was a pull-quote from a New York Times article on assisted suicide. And in a Nazi propaganda photo from the 1930s, photos of disabled individuals are captioned “life only as a burden” the20existence20of20the20patients20in20the20ward20is20described20as20life20only20as20a20burden
  • …and “life without hope.”film02
  • In reality, wheelchair use is an adjustment, but it’s not hopeless. “Many disabled people have a wildly different way of appreciating life and defining a life worth living,” says Shannon F. “I was so weirded out when Kylie Jenner did that photoshoot and used a wheelchair to represent being ‘trapped’ or ‘limited’ or whatever. I’ve always associated wheelchairs with liberation.”

I’m going to start trying to post more on this blog, including more “extras” (aka, I consistently send in articles that are hundreds of words over limit, so I feel compelled to stick those somewhere…).

Thanks, friends.

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reading aloud

I’m sorry I’ve been so absent, all: I just found this post that I’d forgotten to put up, so here you are.

When I was younger, I hated reading aloud.  I loved to read, of course – I’ve always known that stories carry magic – but I remember sitting in my second grade class as we circled around with Charlotte’s Web and I just knew that my tongue would trip over the words in a way my mind never did and my mouth would get dry and my voice do something I didn’t want it to do.  When I read to myself, I was swept up in the world of the book in a way that mimicked restfulness, and I’d look up from my book with the feeling that I’d just woken from a nap.  Reading aloud, though, scared me.  As I got better, I’m sure I became more cocky about it.

But recently, I’ve realized that there is a specific and dense magic that comes from speaking the written word, a magic that transcends what I’d expected from printed ink on a woven page of pulpy tree.

I think that children understand this magic deeply.  I always love to read aloud when I babysit (once I read a self-abridged version of A Wrinkle in Time), but this summer, something really captivating happened.  I was filling in for a family’s nanny for half a week, and the second day on the job was Homework Day.  Everyone was upset about it, obviously, moaning and half-heartedly scribbling on their math sheets.  The youngest’s only remaining homework assignment was to be read to.

I grabbed an abridged children’s copy of Treasure Island and began to read to him in a hushed voice, glancing up at him every once in a while.  When I started, he was squirming, sliding out of his chair, and rolling his eyes up at the ceiling.  Halfway through, he was looking at me.  When I stopped after the first chapter and started to put it away, he grabbed my arm, looked me in the eye, and said, “Don’t stop!”  By this point, the other two weren’t doing their homework either but had started listening to the story.  One of them had crept around to look at the illustrations.  After lunch, we relocated to the couch, huddling together to read about poor Jim Hawkins.  I did some growly pirate voices and we all giggled over Ben Gunn’s cheese obsession.

We sat for more than two hours and read that whole book, cover to cover.  They never once got bored or wanted to stop.  The story had pulled them tight in a sort of magic, and even when my voice began to dry up they wrapped themselves around each word.  Treasure Island has no deep moral or spiritual truth (upon first glance, at least); it’s an adventure story, but it knows how to speak.  It understands the power of story, and so did the children.  This got them focused like nothing I had ever tried before – no sports break, homework incentive, or movie grabbed them like Treasure Island did.  It was absolutely unbelievable.

I think I finally understand the bardic tradition of the Celtic tribes, why the poets advised the kings and were revered as they were.  I understand how powerful it would have been to have everyone gathered in a castle hall for their Michaelmas celebration, shuffling quietly as they listened to the bard unfold the tale of the brave, perfection-seeking Gawain and a Knight, green from the hair of his beard to his very skin.

As Tolkien best put it, it is a “Small wonder that spell means both a story told, and a formula of power over living men.”

Also this summer, my grandmother, while visiting us, fell and broke her hip.  It was terrible and scary, but she did such a wonderful job recovering.  We would often come visit her to talk and chat, catching her up on everything and discussing different things.  One night, her trigeminal neuralgia was acting up badly, and she was in a lot of pain.  We headed over, and she couldn’t talk.  In half an hour, the nurse could come and give her a dose of pain medication.  I figured I would distract her.  I held her hand tightly, pulled up my story on my dad’s iPad, and began to read.

I got very quiet as I did so, for I was self-conscious of reading words that I myself had written.  I shook it off.  My grandma relaxed perceptibly and smiled at me.  The time passed.  It was crazy, the feeling that filled the dark room, a comforting sort of heaviness that blanketed us.  Before we left, though, we all prayed for her.  I was fervent and earnest, and I could feel that the words coming from my mouth were not my words, and I felt the Holy Spirit there.  It was love I was speaking, just love.  The power of prayer was tangible and suspended, and the next day, Grandma was better than we’d seen her in weeks.

I keep running into the reading aloud.  Oxford’s Keble has a chapel built into it, and it’s absolutely beautiful, with storytelling stained glass and a massive organ and echoey, cavernous ceilings.  In one of my first weeks here, at the urging of the Bursar, I crept into the empty chapel’s side-room.  There was a Bible and a list of the readings for the day, and I read them aloud in a whisper, turning from Jonah to Luke and having the privilege of letting God’s Word permeate the place through my voice.

I wrote a play for Oxford’s Cuppers competition, and that was a completely different rush, the joy of watching people speak your words in their voice and telling them how to act around them.  There would be moments when they pulled something out that was exactly right, better, inventing, embodying an imagined thing.  That’s magic, too, isn’t it?

And now we come to the vehicle of my remembrance of this post.  My Paradise Lost essay from last week was all about speech: I wrote about God creating beautiful things through speech and Satan perverting them, about a blind Milton speaking his words aloud and fashioning himself into the old recitative epic poet, and I spoke my words aloud to my tutor.

Words are important, living, and active.  God spoke the universe into existence through the force of his speech, creating the universe through a word and through the Word.  The Word has saved our people by becoming like us, by dying for us, by refusing to stay dead.  Do not discount what you speak; God’s words have power, and so do yours.

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Read this: my story (“The Mason Jar”) if you like;  Tolkien’s “On Fairy Stories  (you have to)

sick (part ii)

When I woke up this morning, I couldn’t get out of bed.  My limbs felt like they were made of the iron that I lacked, and every time I moved I was crushed with a wave of dizziness and nausea.  I feel a little better after eating, sure.  But I’m leaving the country on Friday, so I’m a little nervous.  This isn’t a surprise, though, due to the fact that I ate too little yesterday and my iron levels, which are supposed to be 13-150, are less than 5.

I’ve been tinkering with the idea of writing this post for a long time now, and it’s ironic that this has given me the space I need to write it.  I talk to very few people about it, so this should be part confession and part discussion.

I can’t ever remember being truly healthy.  We’ve been trying to solve my health issues – stomach problems, low immune system, occasional anemia – for a lifetime.  Sometimes, it was fine.  Until last year, really, it was under control, and I didn’t really think about it.  But there would be days when I would wake up in the middle of the night so ill that I could not sleep.  I felt so frustrated, as though I was trying to calm my body like a crying child.  I would take the shaking and the pain and throw medicines and food at it.  I would throw up my dinner involuntarily at five in the morning, not understanding, and weep into my hands in anger as I watched the pale, blank sky and listened to the premature chirping of the birds outside my window.

I realized just recently the effect that my body’s had on my understanding of the relationship between the body and the soul.  I’ve always put such a heavy emphasis on the soul over the body, regarding the latter as broken.  This past year, I’ve getting pretty tired of my physicality.  It’s only in the past year or two that I’ve realized that there will be a resurrection of the body as well – John Donne’s helped me broaden my understanding immensely.  I’m trying to bypass the hatred and betrayal that I’ve felt to my corporeal form for so long.

This summer, I was finally diagnosed with celiac disease.

There was a week in between the autoimmune test’s positivity and the diagnosis where I thought a lot about what it would mean to know, and what it would mean to actually start getting better.  I thought I would have a sort of identity crisis.  Not in a basic theological way, of course, but in the details.  Celiac is genetic; I’ve had it for my entire life.  I broke out in eczema, one of its symptoms, when I was three days old.  Before I had a name, I had been identified by this disorder.  Did I sleep so much because it was part of my personality, or because of the fatigue? How much of me has been shaped by this? And who would I be without it?

I shouldn’t have worried so much.  Not much has changed.  In part, I’ve realized that celiac’s diagnosis makes a lot of sense.  All of the symptoms I’d been experiencing over the years stemmed from this one disorder.  Here’s how it works: people with celiac can’t digest any sort of gluten, which is a key part of foods like wheat, rye, and barley.  Because we can’t digest it, it slowly wears away at the digestive tract, causing inflammation, pain, and malabsorption.  This malabsorption leads to fatigue and deficiency in things like B-12 and iron.

When I was diagnosed, I was upset.  Having celiac means devoting constant attention to what you eat, because even a little bit of gluten sneaking in can wreak havoc on my whole system.  Gluten comes from the Latin word for glue, and so sometimes, it feels a little bit like I’m coming apart without it, but I’m learning to navigate it.  I may put up a page on this blog with a few tips for the newly diagnosed, or make a separate post on celiac advice.  The strangest part was this: the worse I got, the more wheat I ate.  I thought it was making me better – I saw it as the one thing that was ‘safe’.

For twenty years, I poisoned myself, thinking it was the cure.  If that doesn’t have theological implications, I’m not sure what does.  As humans, we crave the thing that kills us, and we turn for comfort to the very thing that will ultimately destroy us.  Even sin can be beautiful to us, drawing us into a comfortable dependence and our ultimate demise.  The things that are good for us are painful at first.  However, the more I eat the foods I can, the more disgusting the others seem.  The more we live with God, the more repulsive sin will become to us, and the healthier we will become.

So here’s to figuring out painful things, and moving in the direction of getting well.

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p.s. I’m fine, guys.  Haha.  This was a little dramatic. Do not worry.

keats, classes, and the future

So this morning, at 8:30, I signed up for classes for next semester.  Translation: I had freaked out about it all day yesterday, talked to several professors and parents until I finally had some semblance of a schedule… So I woke up at 8:25, clicked some buttons on my laptop while still in bed, and went back to sleep instead of going to Calc.  Uh…

Basically, I’ve decided to take Chem next semester, just to keep my options open.  And… well, lots of angsty feelings and miniature crises.

I rediscovered John Keats a few months ago, when I found a book of his poetry in a bookstore and bought it on the spot.  He has a marvellously sad and beautiful story (let’s add him to the list of my historical crushes who die young…).  Basically, he was a doctor, and he was torn between practicing medicine and writing poetry.  The enormous amount of time he spent being a doctor meant that he didn’t have time to write, and eventually (and scandalously), he left his career in order to pursue poetry.

Thank goodness he did, because he didn’t have much time to do so.  He was engaged to Fanny Brawne when his tuberculosis worsened, and because of his medical training, he knew that he was going to die.  It’s absolutely heartbreaking.  He died in Italy in the arms of his best friend.  He was only twenty-five.  Twenty five!

But as I sit in my MedPrep class (which basically tells you what it’s like becoming a doctor), I feel like Keats.  Okay, no, I’m not an amazing poet who will forever be remembered by history.  But I understand why he felt the way he did.  I understand feeling split between two very different things, feeling like that Raskolnikov, like a split soul.  I understand worrying that writing isn’t a real job, that I don’t have anything good to say.

Honestly? I hate making decisions.  Thinking about my future makes me feel a little sick to my stomach.  And I’m just tired, and burnt out, and just focusing on getting through finals and to summer.  But that also means another year passing, getting one step closer to making a dreadfully important choice.

And I don’t want to choose something, because I can see myself doing so many different things.  My problem? I love everything.

Alright, that’s a lie.  I don’t love diseases, or ants, or not sleeping, or being sick, or mosquitos, or homework, or fatty foods, or people reading over my shoulder, or getting bad grades, or axe murderers (oh… wait, also a lie… see Rodion Romonovich Raskolnikov…).  I don’t love decisions.

But you know what I mean.

My friends call Wednesdays, when I have MedPrep, my existential crisis days, which is pretty accurate.  It’s frustrating, because it reminds me of all the reasons I wanted to be a doctor in the first place and shows me how hard it is to balance medicine with anything else.

I love problem solving, people, helping others, learning new things, and seeing the beauty of the human body.  I love the logical side to it, the fact that it’s a puzzle with a solution.

But I don’t love how much time it takes.  It’d be years before I became a doctor, and then once you’re there, it’s so time consuming.  Medicine takes over your life, and I don’t know if I could deal with that.  That and people dying.

So, I’m struggling with this.  And thinking about it terrifies me.  Honestly, I just want to go and travel the world or live in a big city where I can learn and meet new people and collect their stories as I go.  I love meeting people and talking to them about the things that really matter.  The eternal things.

I’ve tried to give it up to God but a) I’m very good at worrying and b) I don’t know what He wants me to do.  Honestly? I just want to do whatever He would use me best in.  I know that He’ll use me in whatever I do… but still.

I want to do something that matters.  And sometimes I don’t know if that’s fueled by my own selfish desires for greatness or for the right reasons.  But I don’t want to waste my life.

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P.S.  I’m terribly sorry for the poorly-written, intensely personal post.  I don’t think I was very clear and or insightful.  Excuse me while I melt into an awkward puddle of feelings.

EDIT:I just got back from my meeting with my Christian group, and we talked about… worrying.  God is good, all the time, and He keeps reminding me to trust in Him and find my worth through that.

the human body

I was walking back and forth in my dorm’s elevator when I noticed the slight, contented ache of a good day of walking in my legs.  In that moment, I thought all of the ropy muscles in my thighs, calves, and feet, imagining them straining and relaxing, bunching themselves up and stretching themselves out with every step or shift of weight.  The fact that I can do something like walking is amazing.  Each muscle works perfectly with the others so easily that I don’t even have to think about what to do with each one and what’s pulling what in which direction.

Our bodies are absolutely fantastic.  I can’t even… just think of the complexity of it for a second.  There are so many different systems in the body, with the brain controlling the whole thing, and everything works together in delicate balance in order for us to even function.  It’s a miracle that we work so much of the time, really.  It’s beautiful, the way that we’re so specifically and perfectly knitted together.  I think this is part of the reason why I’m still struggling with the decision to be premed or not, because I’m so drawn to the magnificent beauty of the human body (more on this later, probably).

I was lying in bed this week, trying (somewhat fruitlessly) to fall asleep, when I slid my hand over my own heart and just felt my heartbeat for a while.  As I focused, I could feel it fluttering there in my chest, keeping me alive, pumping with each beat.  I noticed how one side beat harder than the other, how it was stronger on the left side than the right.  I could feel it sending my blood shooting out into my extremities, pulsing and circulating throughout my entire body and reaching my fingers until I felt the heartbeat in my hand and my chest.

But my first impression struck me the most.  As I lie there with my hand over my heart, I was suddenly reminded of a memory.  When I was younger, we found a tiny gray-and-white kitten that we brought home for a few short weeks before realizing that it was much too young to be with us.  We named it Mischief and cared for it very carefully, holding it, giving it baths, and giving it a stuffed animal to snuggle with at night.  As sad as my brother and I were to see the kitten go, we were glad it was back with its mother.

I remember holding Mischief to my chest, one hand underneath him and the other keeping him close.  As he nestled into the folds of my t-shirt, I could feel his tiny heartbeat in my fingers.  The skin, bone, and fur that separated his heart from my hand seemed paper-thin, and I could feel every quick beat through his delicate ribcage.

As I lay in bed, my own heart felt like that.  I felt so… vulnerable.  I was suddenly aware of my own fragility and of the delicacy of the thin layer of material that guards that organ that preserves my life.  My life is so brief.  I could be killed in a second.

It’s a marvel to be alive.  Every detail is so perfectly crafted… you’re fearfully and wonderfully made.  I was walking home from the library Monday night (more like Tuesday morning), praying as I trekked back to my dorm.  As I looked around, and thought about these same wonders of existing, I had to stop because I realized this:

God is the God of the entire universe.  He created everything in it, and designed it – I stopped for a while to look at trees.  How do you even think up trees? And the form helps it stay alive as well (google photosynthesis… haha). One of the things I really love about creation, too, is the way something can be both functional and beautiful.  Like our bodies.

So, God made the universe.  He designed everything specifically, including us.  As beings created in the image of the eternal God (!), we are the pinnacle of creation.  I paused while typing that, because it seems conceited… but people are more important than animals or nature.  We’re the only animals with souls.  And after God created us on the sixth day, he didn’t just call us good, but very good.

And this all-powerful, all-knowing Creator of everything we can and can’t see, this inconceivably wonderful and mighty God… loves us.

We can talk to Him. Just… just stop for a second.  We can talk to the God of the universe.  It blew my mind when I realized it.  I’m so unworthy of speaking to Him.  I’ve been praying for so long, and I whine and moan about tests and lost belongings and my shallow, petty feelings.  It’s infinitely crazier than going to up to the President and asking him to scratch that itch on your back that you can’t reach, or help you clean out your fridge or listen to you talk about your favorite TV show.

And He still listens, because He loves us so much.  Even when we whine about the stupid things that really don’t matter, He lets us talk.

I think that I need to start taking prayer more seriously.  Sometimes we get so carried away with the whole God-is-love, God-is-my-friend mentality that we forget how awesome He truly is.  Yes, of course those things are true.  But He’s also the ruler of everything, the God of everything that has been and will be, the Eternal Creator who created time itself.  He holds infinite power, and He still cares about us.

That’s a little bit mind-blowing.

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“So God created mankind in his own image,
in the image of God he created them;
male and female he created them.” Genesis 1:27

Anatomy of the Human Heart

Muscular System

sick.

My brother does this thing.

There are so many things that he could say instead, as most people do.  I’m sorry.  Feel better.  A soft, murmured, poor thing.  A pat on the back, a sympathetic groan, a thoughtful do you need anything?  They’re all things we say to people that are sick and really hurting, and they’re all perfectly wonderful things to say.  They truly make me feel a little bit better.

But my little brother looks up at you with a soft smile and offers up a quiet, songlike “I love you”.  Sure, he says the other things, too.  But somewhere in there that simple phrase softly emerges, putting emphasis on the love every time – “I love you” – as if those three words could go farther than a healing of the soul to a physical healing of my body.  And that seems ridiuclous at first.  Why would he say that?  Great, but how’s that going to make me better?  The thing is, I have never once thought that when I hear the words leave his mouth.  It never makes me bitter, because it’s hard to look at pure love and feel upset.

And I think my little brother has the right idea.  I think (as much as I want to separate the two) that the soul and the body are more closely linked than we imagine or want to believe.  Love is so much stronger than we even realize, and we don’t see that.  We look for complex solutions, pragmatic findings, things that can be tested and proven.  And of course this matters.  But sometimes – most of the time – we need to know that we are loved as much as we need medicine or the right diet.  It might not heal our bodies by itself (although I have no doubt that it helps), but it reaches in and heals our hearts.

When we’re the most vulnerable, all we want to know is that we are valued, loved, and cherished.  That’s why those other things mean so much, too.  The sympathy, hugs, acts of service.  They’re all ways of sharing an immense love, and it’s a beautiful things in the midst of feeling absolutely awful.

Love heals.  Jesus cares about our bodies as well as our souls – why else would he have healed all the people that he did?  It was a way to show his love and his power to them and also meet their needs.  Not only that, but he healed us completely, in all our being.  Jesus’ death on the cross for our sins was the ultimate sacrifice of his very life that brought the ultimate and eternal healing of our souls.  We’ll get new bodies, too, in a resurrection to mirror His.  We will beraisedwith Him to live in eternity, forever made new and forever healed.

I’ve had the flu since Sunday, when I woke up with a fever.  I’m not going to pretend that I’m enjoying this, or that this is how I really wanted to spend my Spring Break (truthfully, it’s pretty terrible).  It’s really, really difficult to find the bright side in spending my only week at home on the couch in the study, surrounded by meds, toast, blankets, a thermometer, and Netflix (okay, that sounds kind of nice, now add the flu).

But I am loved, and I know that.  I am loved so much more than I deserve.  And a hug, just being held by someone who knows full well that I’m contagious, is one of the most beautiful things in the world.

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Read this: “We love because he first loved us.” 1 John 4:19

Also, I read Blue Like Jazz (<click) a few days ago, and it was brilliant and amazing.  Go buy it now, or check it out from the library, or borrow it from a friend.  It’s beautiful, and fantastic, and honest, and I loved it.  I don’t really know how to explain it.  So read it, and maybe I’ll write a post on it soon.

See this: I’ve watched a heck of a lot of TV these past few days.  I wouldn’t recommend that telenovela or the end of the Mummy #3 (I think…?) where Brendan Fraser and his attractive British son use great teamwork to stab a Chinese mummy (uh)…  But the 1950’s version of The Importance of Being Earnest was pretty fantastic.  My family’s also forced me to watch a heck of a lot of Burn Notice, and I’ve watched some Phineas and Ferb (NO REGRETS).  Oh, and expect something soon about Breakfast at Tiffany’s.