Seeing Invisible Illness in Modern Storytelling

Illness is portrayed in many modern stories, and most often, the illness is invisible. This allows for the hero or heroine to remain beautiful – something our society values above all else. The one thing these ten stories have in common is that somewhere in the plot, there is sickness. Illness often appears as an antagonist inside the hero, and only rarely as something the hero must come to live with. Sometimes, the illness is not the hero’s, but it belongs to someone the hero loves. In this case, illness is the catalyst that drives the action. Sometimes it is the villain who is sick, and the illness drives the acts of evil in the story. In any case, the story is somehow about illness, life with illness, or overcoming illness. No matter how illness is used, there are positive and negative social implications.

The Pros

There are many pros to the ways illness is used in modern storytelling. Having illness figure prominently in the plots of films and TV shows has one over-arching positive impact, and that, of course, is awareness. The fact that people hear about these invisible conditions is a huge contribution to the world of someone with an illness. It is much easier to find support and acceptance when people can say “Oh, I’ve heard of that.” Storytelling shows us the trials and tribulations of living with illness. Some may rise to the occasion, like the heroes, and some may become corrupted by it, like the villains. Either way, storytelling offers insight into the world of someone struggling with illness.

The Cons

As great as awareness is, there is also a lot of bad coming from the way illness is currently portrayed in modern storytelling. Obviously, the fact that many villains are driven by some kind of illness does not really paint a pretty picture of those of us who carry the burden of illness. Generally, ill villains become evil by stopping at nothing to get their “cure.” But even the ill heroes and heroines have some cons to them. In these stories, is illness too glamorous? Too melodramatic? Usually it is, at best, unrealistic. At worst, it beautifies being sick until it ranks with hubris or some other trite trait. You know the saying “Some are born heroes. Others have heroism thrust upon them.” This is the way that heroic illness is often presented. What are the implications of equating fighting illness with heroism? Is this a realistic view? What are the problems here?

How To Be Sick

By including illness in the plot of these stories, the author does seem to imply some kind of advice on how one should be sick. In some cases, the author is sick, and in some cases not. Generally, though, an image is painted of how a sick person “should” be. The archetypes are not realistic, and perhaps even harmful to real people who are sick. There are basically three types of sick people in stories:

  • –  The Hospitalized Angel – usually a beautiful and innocent female character who is totally helpless.
  • –  The Tragically Ill Hero – the one who stands up to fight their illness, usually alone, and usually triumphant. Generally finds a cure.
  • –  The Desperate Villain – usually sympathetic and male. Will do anything to find a cure to his illness.

How to Be Well

Inversely, as these stories offer advice, both good and bad, on how to be sick, they also offer advice on how to be well. There is really only one person in a sick person’s life in movies, right? Their hero. Their champion. The person who rides out into the sunset, vowing to find a cure. Sure, when a Western hero does that for his little sister, we all cheer. But there is one thing about this that is very destructive. Say you are a healthy young man, and you have started dating this pretty girl. You like her a lot, and as the relationship gets more and more serious, you find out that she has an incurable, lifelong disease. Suddenly, you realize that the world will expect you to be her hero. Can you devote your life to that? Do you want to? How terrible must it feel to know that anyone you get involved with will have to take that place – the sick person’s champion? Wouldn’t you rather be a Tragically Ill Hero, and go off by yourself to find a cure?

What’s the main problem here? This entire scenario revolves around finding a cure. Rarely, if ever, does a couple in a story learn to live with illness.

Change It

I want people to look at these stories and, after weighing the pros and cons, and examining the stereotypes, decide what parts of the story are valuable, and think about what would need to change. Stories about illness should convey illness realistically, and offer help or comfort to those dealing with it. Some of these stories may not need changes. Others may only need a small tweak. Others still may need to be rewritten completely or altogether thrown out. I want to get people talking, get people writing, and get more stories out there about illness. I want stories that raise awareness and bring light and hope back into the lives of those who suffer.

The Stories

Repo! The Genetic Rock Opera

Synopsis: In a dystopian future, the human race almost died out from an epidemic of organ failure. After GeneCo., a company run by Rotti Largo and his three children, begins financing organ transplants, mankind is saved…but when the repossession of organs is legalized, Repo Men begin hunting their patrons down and brutally murdering them to re-attain the organs.

Nathan Wallace works for Rotti Largo as a Repo Man after the death of his wife, Marni. Rotti, who also loved her, has convinced Nathan that her death was his fault, and uses this to blackmail him into being a Repo Man. Nathan and Marni’s daughter, Shiloh, has the same grave illness her mother had, and has never left her own house. She lives a very sheltered life. She has no outward signs of illness except hair loss, which she hides by wearing a wig.

When Rotti finds out that he has a fatal disease, he decides it is time to collect and exact his ultimate revenge on Nathan for winning Marni. He lures Shiloh away from her home, promising a cure. Shiloh meets him at the Opera, where it is revealed to her that her father is a Repo Man and a murderer.

SPOILERS (skip to next title if you want to keep the ending a surprise)

Not only that, but he has also kept her sick when he could have cured her – he wanted to keep her locked away at home, sick, to protect her. Rotti hands Shiloh a gun and tells her to kill her treacherous father. She refuses, and Rotti kills him himself. As she holds her dying father in her arms, she assures him that all is forgiven, and leaves the theater with her head held high, vowing to find a cure and be the master of her own fate.

How To Train Your Dragon

In a Viking world where dragons fly, a village lives in constant fear of the onslaught of attacks from wild dragons. Children are raised to hunt and kill dragons to protect the village. As a rite of passage, each child must fight and kill a dragon to be considered an adult.

One outcast boy, Hiccup, finds a rare type of dragon sleeping in the woods. Seeing this as his only chance to kill a dragon, he attempts to kill it. He finds, however, that he does not want to. He observes the dragon from afar, and realizes after a few days that the reason it is stuck in the forest is that it’s tail is injured and it cannot properly fly.

Hiccup begins to befriend the dragon, gaining its trust. He starts trying to train him, and at the same time, he works on designing a kind of fan to attach to his tail so that he may fly again. When the Village decides to send a crew to the Dragon’s island, Hiccup shows the youth of the village how to train dragons, and together they help save the dragons’ home.

SPOILERS

In the climactic battle, Hiccup is grievously injured. He ends up losing part of his leg and must build himself a mechanism to walk again. He and his dragon are rehabilitated together, both of them learning to live with prosthetic help.

The Amazing Spider Man

Peter Parker begins snooping for clues about his parents’ mysterious disappearance when he was a child. His hunt leads him to a scientist who his parents worked with – Dr. Connors. Dr. Connors has only one arm, and is working on a serum to help humans heal themselves the way lizards do. He tests the formula on himself, and mutates into a giant lizard-man who terrorizes the city.

Meanwhile, Peter is experiencing new mutations of his own, as he develops spider powers from a spider bite he got at the lab. He rises to fight off the deranged lizard doctor, and bring peace to the city.

Final Fantasy VII: Advent Children

Cloud Strife, an ex-mercenary, has been living in isolation after he came down with the geostigma disease. The geostigma is an epidemic that has been raging all over the world. When all the children with geostigma in town start disappearing, he reconnects with his old friends and comes out of self-imposed isolation to try and find them.

SPOILERS

Three mysterious men have kidnapped them and begun to brainwash them. In a clash of swords, magic, and muscle, Cloud and his friends fight them off and save the children. A cure is found, and Cloud and the children bath in a magical pool and are cured.

“Peggy’s Turtle Song” (King of the Hill)

Bobby Hill is diagnosed with ADD and put on Ritalin. (you can read my detailed analysis here)

“Junkie Business” (King of the Hill)

Hank Hill hires a new part time employee at Strickland Propane. When he finds out the man is addicted to drugs, he tries to fire him. The man finds a loophole in the law and enrolls in a rehab. Under the Americans with Disabilities Act, Hank can no longer fire him and, in fact, must actually make ridiculous accommodations for him. In response, the other employees self-diagnose their own disabilities and demand accommodation.

“Hank’s Unmentionable Problem” (King of the Hill)

Hank Hill begins having problems with constipation, and is extremely embarrassed about it. Out of concern, his wife Peggy talks about it with everyone. Hank and his family must bond together to overcome the medical problem, no matter how embarrassing it might be. (check out my video review of this here)

The Secret Garden

After loosing her parents in a tragic epidemic in India, Mary Lennox comes to live with her uncle. She discovers a house full of secrets, a very sick cousin of hers, and a garden that’s been locked up forever. Through curiosity and bravery, Mary opens the garden, frees her Uncle from his depression, and helps her sick cousin Colin to get well and walk again.

The Secret of NIMH

When her son falls sick, Mrs. Brisby must venture forth from their small home and unlock the secrets of her husband’s life and death to save her son’s life.

The Directive

When Lynne, an introverted college student who loves books and reading, is diagnosed with Crohn’s disease, her whole life is turned upside down. As she navigates the turbulent new world of hospitals and doctors, she realizes that she must come out of her shell and change herself and her life if she is to now live with Crohn’s. (check out my review of this amazing book here and read my interview with the author here)

Summary

It was actually quite challenging to find illness portrayed in modern stories, and as you may have noticed, I did end up including one story that is not exactly modern – the Secret Garden. I felt, however, that its inclusion was valid, as this book is considered by most to be a “classic” and is still widely read today.

I had a really great time putting all this together. I keep a running list of movies and books I come across that pertain to life with illness, though I was only able to used a few from that list for this particular project. Many of the stories were allegories for illness, and those would simply not work in this setting. Perhaps one day it would be fun to put together a sister collection to this one that is mainly allegories. But for now, I focused on stories that actually featured illness as a big factor in the plot.

I would have liked it if illness was the main driving factor in each plot, but I feel that a collection like that would feature only one type of story – the Tragically Ill Hero story – and it was very important to me to show a variety of ways that illness can be used. Some of the examples are wonderful and realistic, and others are stereotyped and beautified. I am glad I was able to find a good mix, because I think that people in general have mixed up feelings about illness.

(NOTE: I wrote this as a part of my final for my storytelling class back in 2012. What are some good newer stories dealing with illness? Leave your ideas in the comments below!)

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On Exercise…

Pretty much all of us are aware that exercising more would improve our well-being. Every blogger out there has written about “finding what works for you” and how fitness is next to Godliness. Me? I’ve found “what works for me” I guess, there are a lot of exercise type things I really enjoy. But I don’t buy this fitness craze that seems to slowly brainwash our facebook friends into posting about how they LOVE running or sweating or going to the gym. Ugh. Stop it.

Anyone who says they genuinely enjoy going to the gym more than Netflix, video games, or napping is a liar. Maybe I’ve just lived with a lowered “spoon count” for so long…

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…that I think this is just normal, but at the end of a work day, I have time to do maybe one thing in addition to dinner. So that one thing could be a lot of things – Continue reading

New Hydrocodone Laws

When I heard about the new laws regulating hydrocodone I didn’t think it was a huge deal. I’d been on it for 5 years and my doctor and I agree it’s the most effective thing for my situation. I felt confident that he and I could work through this.

But here’s the big problem: with doctor and patient working together and doing everything they can, this medicine is still almost impossible to get. I had to leave work early Tuesday trying to get to the doctor’s office in time but traffic was too bad. Then on Wenesday I was 2 hours late to work after “stopping by” the hospital where I had to wait, then have a pow wow about these new laws and how ridiculous they are and how it’s very hard to get around. In fact we mostly discussed other pills to try that were easier to get.

Well that sucks! Because I’ve been doing this for five years and yeah, I’ve tried a lot of other medicine. Meds that didn’t work, or made me sicker, or stopped working over time. Hydrocodone has been good to me. Now I have to start all over.

On top of that I now had to pay for a doctor visit AND hospital parking – making my usually $5 pills cost $37 not including gas and time missed at work.

Just look at the prescription pad both the doctor AND pharmacist have to fill out:

triplicate perscription form

So after a deep interview with my doctor I had to all but do a background check at the pharmacy. It feels like we’re all guilty until proven innocent with this law. Except that there seems to be no way to prove innocence.

I apologize for the strong language – but the war on drugs has seriously fucked us over.

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Man, jumping through all these hoops sure would be hard if I was in pain with no treatment – OH WAIT.

Generally people need medicine when they’re most sick, so this is NOT a good time for me to be running around like this. Not to mention the havoc it’s wreaked with my anxiety disorder.

All of this on top of the mental anguish of infertility, transitioning from full time to freelancing, and regular life problems.

If you want some more insight into why these new laws are so tragic, check out this video. I have it cued up to what I think is the most shocking and depressing fact, but if you have time I encourage you to watch the entire half-hour.

LINK

((WARNING: If you watch all the way to the 26 minute mark, there are graphic medical images that may be disturbing to some viewers. Digression advised.))

And, for the record, these laws have NOTHING to do with the Affordable Care Act or “Obamacare.” I’ve had a lot of people say “Oh yeah Obama made me switch insurance” or “we’ve had to jump through hoops to get -insert regular schedule III medication here-” – No. Just, no. This has nothing to do with that. You aren’t listening.

Almost forgot to mention – NO REFILLS. So now I’ve got to ration the shit out of these 30 pills before DOING THE ENTIRE THING FROM SCRATCH ALL OVER AGAIN.

What do we do, guys? This is important. Would a petition help? Do I need to chain myself to something? I’m not usually a protester but

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Jesus Christ, Narcotics, and the Addict Complex

My favorite class I took in college was Old English Literature, not just because of the subject matter, but because I had a truly great professor. I’d like to open this post the same way he opened that class – you see, most of the surviving texts from the period covered are Christian because the monks took better care of their paper than the vikings, who really preferred oral story telling anyway.

This is not about religion. We will be talking about religious texts in a time where 99% of the people reading these texts believed they were truth. Therefore, it is in our best interest to assume those beliefs when we discuss this literature. This is not a forum to discuss your own beliefs, or judge the authors for their beliefs, or to otherwise get all touchy-feely. We won’t get any literary discussion done if you use this as a platform to make speeches and persuade others to share your feelings. We are going to look at this text for what it is.

But, in my case, I’ll be using  Judeo-Christian stories to illustrate a point about narcotics as that Professor used Old English sermons to illustrate the literature of that time. In the same way, I ask all impassioned internet theologists to please focus on my point and not the fact that I’m mentioning and believe in Jesus Christ.

Thank you. Let’s begin.

me dealing with medicine

I have never liked medicine. As a child, I never really took any because I hated the taste and process, and would usually make myself sicker throwing a tantrum over taking cough syrup than I was with no medicine at all. I was relatively healthy, and never even swallowed a pill until I was 16 years old, and I even cheated then – I put it in a bite of sandwich. To this day I can only swallow very very tiny pills with just water – sometimes.

tiny pills itty bitty small

Ugh, what are these, horse pills?!

I had friends that abused over the counter medicine, but that thought never crossed my mind. In fact I wondered how the high could possibly be worth having to take medicine. I’ve been a baby about it my whole life, and I still am today. Pills, syrups, chewables, you name it, I will be dramatic about it.

But you know how my story goes. I end up with a chronic pain condition, and I have to take medicine all the time now just to feel normal, much less “high.” And, as my husband can attest, I still sometimes spit a pill back up 2 or 3 times before getting it down. And I don’t mind sharing how icky they taste and how bad they feel in my throat. But it’s a part of my everyday life now.

While taking most of my pills is only a matter of ickiness, I have encountered a few that I felt ethically against. Recently I’ve been tangoing with antidepressants. I was very afraid to start them, and I ended up quitting cold turkey accidentally which scares me more. It made me start thinking about the nature of the mind, feelings, and reality. I wanted to feel the way I really feel. If I take a pill that makes me feel a different way, what does that mean? What’s real? What’s not? This will need to be it’s own post of course, assuming I survive coming off them. 😉

The other big ethics question was narcotics. I was put on prescription pain medication after this adventure. During this time, I was having the highest levels of pain I’ve ever experienced. And at the time, it was the first true pain I ever felt. I’d never broken a bone or been burned. It was wild and terrifying. I felt so suddenly weak and frightened that taking the pain meds was not a concern. I was busy dreading a life of pain and never feeling normal again.

But you know, it is true what they say – time heals all wounds. Time’s no cure for endometriosis, but time did strengthen my pain threshold and changed my “normal.” Now when I was in pain, I had to start making choices. Can I get through this activity at this level of pain? Is it possible to lay down or take a break? Can I get through this activity under the influence of pain medication? I definitely experienced “highs” depending on what I’d eaten, how much I’d slept, and how long it had been since my last dose. I wasn’t good at tracking and predicting the highs. If I didn’t get “high” from the medication, I also sometimes got excessively sleepy or scatterbrained. Taking the pill was (and is) a complex decision on a case to case basis.

And, like any English major, given enough time, I will over-analyze the crap out of everything.

Now, as a college student, I had watched friends abuse alcohol, street drugs from weed to meth, and become completely different human beings. For some, even using the term “human” is generous. I never drank, partly due to illness and partly due to the fear of loosing myself the way they did. Again, I clung to the idea of wanting to feel how I really feel. I feared loosing reality. I was hardened from loosing people I dearly loved. I deeply hated drugs and alcohol, and I began to feel like a hypocrite for taking narcotics myself.

But it’s a prescription that I only used as directed. I was closely monitored by my doctor. I wasn’t taking them to escape reality or avoid a problem… was I?

I did know that endo pain was often caused by stress. Could I make myself hurt in order to take a pill to feel better not only from the pain but the stress behind it? Was that right? Was that moral? Was that mature? Was that who I wanted to be? Was that even what I was doing? When I’m honest, I know that there have been times where a tylenol could have probably sufficed, but it had been a particularly hard day or it was close to bed time anyway, so I went for the heavy duty stuff. I never took it when I felt perfectly fine, but I felt perfectly fine so rarely that it didn’t really feel like it counted.

In short, I was having trouble accepting narcotics as a part of my life. I didn’t pick this. I didn’t want this. And I couldn’t make peace with it.

Back to my Old English class – because I’m sure you were waiting for that to come back. Drugs are so boring, let’s get to the LITERATURE!

It was close to Easter time, so of course we were going through the many texts on the crucifixion story. The Dream of the Rood, the Exeter Books, we even discussed Jesus Christ Superstar and Passion of the Christ, looking at the different tellings of “the greatest story ever told.” I was raised Christian, married a Christian man, and Jesus is a big part of my life. I don’t always know how to talk about it. But I love the facebook status creed going around that it’s a relationship, not a religion. This class was not only fostering my English major self, but my spiritual self as well. And I was certainly at a time in my life when I needed Jesus more than ever.

The texts focus a lot on the actual time spent on the cross, so we were looking at Jesus’s last words and actions in depth, and talking about what these words and actions would mean to the Old English people. It’s all very fascinating and I could dork out about linguistics and history for a long time, but I’ll try not to. 😉 What really got my ears perked up was when we got to the part where Jesus says “I thirst.

Having grown up in church I knew about the soldiers soaking the sponge in wine and gall and offering it to Jesus. I always thought of that as cruelty and jest. Some translations say “vinegar” instead, I was never a fan of wine, and wtf is gall? It all sounds disgusting and awful, and it was, but the soldiers weren’t just kicking Jesus while he was down.

Just looked up “gall” again just to be sure – and yes, it is stomach bile from animals!

But did you ever wonder why they’d mix wine, which is generally good, with animal bile, which I hope was not considered good? It was biblical anesthesia. It was pain medicine. Far from narcotics, but still! Now that I’m older and less afraid of alcohol (but I still won’t get drunk, half a glass of wine is fine, thanks!) I have experienced that even a small amount of wine does ease endo pain (just don’t drink it if you’re trying to load up on folic acid!). So maybe the soldiers weren’t being mean. Or maybe they were, believe me, people argue about it a LOT on the internet. But it is true that wine and gall was a primitive anesthetic.

And Jesus totally turned it down.

So at first I was like whoa, look at that! My whole addict complex is totally well-founded. Pain is important, and Jesus just said no to drugs and so should I! Drugs are obviously evil!

This was of course based less on the text and more on my own fear of getting high/loosing touch with reality and who I am.

It took a while after this class for me to finish putting the pieces of this puzzle together.

Yes, Jesus said no to drugs, but it really had nothing to do with red ribbon week after school special anything.

Couldn’t get through this post without a reference to this painting. I’m way too amused by it.

Jesus dying on the cross for our sins is a really, really hard thing to understand. It takes a lifetime to begin to make sense of it. I do not want to pretend to be any kind of expert. This is just a sick English major analyzing the biblical text to the best of her ability. I have read the entire Bible, not that I know it by heart or anything, but I’m looking at the whole thing here, not just the one story. In the Old Testament, the Jewish people sacrificed animals for their sins. To a modern reader like myself, that’s freaky. Why? Why kill animals because of your sin? It’s very complicated and hard to understand. All humans sin, though, I know that much. And God can’t be near sin, if you have sin, you are separate from God. That’s not good, since this is the same God who rains down fire balls and turns people to salt – you want God on your side. The problem is that the standard is literally perfection.

I’m at risk of rambling here, and I’d like to reiterate that this is not really about whether or not you think this is true. I do, but if you don’t just look at it like Harry Potter or something. Analyzing the world of the Bible, we see that God wants to be with people but can’t because they’re not perfect. So the solution is a perfect sacrifice. Animals are not perfect, and can only take away a small bit of sin. But there’s no perfect humans either. So God sent his Son to earth as a human who was perfect. He never sinned. This part of the story is pretty common knowledge.

But what I’d never thought about was the actual sacrifice – it had to be perfect too. Not only were a lot of very particular things prophesied in the Old Testament about it, but Jesus had to suffer the full punishment for our sins. Death. Pain. True suffering. And then the poor guy had to go to actual hell. He couldn’t take the wine. He didn’t lessen the pain one iota. He had to feel it all in our place.

He had to feel it all so we don’t have to.

Jesus Christ was God and perfect man dying for the sins of humanity, so he couldn’t take the pain medicine.

I am a 23 year old girl with endometriosis and humanity does not mind if I need to ease the pain a little. No one’s immortal soul is relying on my pain – Thank God.

Does that mean that we should turn to alcohol and narcotics to escape all the pain of every day life? No. In fact I’ve always thought there was a certain sweetness to suffering. After all, who would appreciate the sun without the night? But if you need to cut yourself some slack, take a nap, or even take a pill, it’s okay.

For me, Jesus suffered so that I could live a better life, including pain medicine.

But, if you prefer to only see it as a story, just remember that there are epic times and epic reasons to deny comfort and shoulder the pain for the greater good – such times do not happen every day. Most days, it’s okay to take a pill and rest if you need to.