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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Doing What You Can Even When It Seems Too Small

There’s all kinds of things wrong with the world, and everyone has some issue that they get fired up about. Recently, the Women’s March made waves around the world.

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And lots of women were out there marching for lots of different issues. Pro-choice, Pro-life, women demanding equal pay, women demanding a safer world, women standing with Standing Rock, women who won’t tolerate being talked about they way certain Presidents talk… almost any issue you can think of.

BEN GARVER — THE BERKSHIRE EAGLE  A sign carried in the Washington DC Women's March was delivered by Paul Johansen to the Shire  City Sanctuary for Febuary exhibit of art from the women's marches.

This was a march for like…everything. It seemed like every issue that people get fired up about was represented, even both sides of arguments showed up. Pro-lifers were marching right along with pro-choicers. Yet there were still some who just couldn’t find an issue to cheer for, so they protested protesting!

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But all of these people all over the world with all these views have something in common. They all went through a series of universally human steps:

  1. They felt a fire in their belly about something.
  2. They made up their mind to take action towards real change.
  3. They took whatever action they could think of.

Take me, for instance. I was diagnosed with endometriosis as a high school senior, but it wasn’t until my senior year of college that I started feeling the fire in my belly for health activism. At the time, I didn’t know a word for it, but it was health activism. I saw the discrimination of myself and others who don’t “look” sick, and were written off as liars, party girls, drug addicts, or attention-seekers.

Once the fire in my belly got hot enough, I reached step two: I NEED TO DO SOMETHING.

I cannot accept the way things are. I know that people can learn. I want to teach them. I want them to learn the science of these illnesses and health in general! Health education is so, so lacking in America. I can tell you exactly how a plant uses water and sunlight to create energy and grow and what makes a plant healthy or unhealthy, but I graduated without even knowing what all my lady parts are even for and how diet can drastically affect how your body functions. As Trump would say, “SAD!”

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But here’s the kicker. Everyone everywhere has gone through steps one and two, but so many people give up before step three. Why? It’s not because the fire has gone out. It’s because any action we can think to take often seems too small. I’m just one person. I’m not a politician, I can’t control laws. I’m not an educator, I can’t change what people learn in school. I’m not a doctor, I can’t cure people. I’m just one sick person. There’s nothing I can do.

Either that, or we reject the ideas we do have. I could start a fundraiser, but it would annoy my friends and family. I could protest, but what if I’m alone? I could donate money, but where does it go and what does it do? I could write things on the internet, but literally everyone does that and it would be a drop in the ocean.

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I decided to go for it. What could I think to do? Well, I was a creative writing major. I could write something – what? A blog. Because it’s free and (in theory) the whole world could read it. Could. Probably wouldn’t, but it was possible. And what about my school? The discrimination that put a fire in my belly all happened at my university. I needed those students, specifically, to read what I had to say.

How? I decided to make posters. Just black and white, 8 1/2 by 11, self-printed posters.

do i look sick invisible illness awareness

Aww look at my old url. Anyway, I posted these all over campus, occasionally getting scolded, and feeling quite sure no one would ever read them or my blog but whatever. Like I said, I had to do something.

I got an email from an anonymous person thanking me for bringing this issue forward, but it was one out of the dozen or so emails I got telling me to please stop so it seemed like not a lot. But then a really crazy thing happened – a girl stopped me on campus and said “I recognize you… you’re on those posters!”

We ended up having a seat on a bench and talking for upwards of thirty minutes. She had a bone marrow disease (I wish I could remember exactly what) and had struggled so much with faculty and other students not believing how sick she was. She was vibrant and full of life and of course, didn’t look sick. She told me that seeing the posters made her feel less alone. And she thanked me.

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So this one little thing that I was sure would make no difference… made a difference. This dumb thing that was the only thing I could think to do actually did something. What I thought would be too small to notice was noticed.

I did what I could and it made a small difference.

I did what I could and it was worth doing.

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Nowadays, I’m still pretty sure everything I do for this fire in my belly is too small. Womens’ healthcare costs remain high (LORDT that is always on my mind) and we have some lawmakers now making things harder. People still post hateful notes on cars parked in the handicapped spot if they’re driven by a healthy-looking individual. This blog has won some awards, but I get about 50 views a day, post super irregularly, and still get a lot of hits from people looking for info on David Bowie.

Most days, this feels too small to be worth doing.

But occasionally I get someone thanking me and telling me how much it’s meant. And I have to think that for every person who says something, there must be more people who don’t speak up, but who glean something from this. And hey, I even had the head of the UNT disability office call me to chat and make sure they were doing all they could for their students.

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So just know that even if it seems too small, do it. Do it for the fire in your belly, do it for yourself, and do it for the world. Think of how much better a place the world would be if everyone did what they could!

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Chronically Lazy Student vs. Chronically Ill Student

I’ve sort of always come off as a “lazy” kid. In fact the day I was born, my heart kept stopping because my umbilical cord was too short. My Dad always says it was my first act of laziness.

umbilical-cord

“Eh, how long does this really need to be?”

I grew up with a special fondness for sleeping in late and reading books in bed all day. In school I did a lot more drawing than I did notetaking, and subject that didn’t hold my interest (like math) quickly fell into a constant stream of C’s on my otherwise good-looking report card. Why?

Well, I was lazy. Smart sure, but uninterested. It was a huge headache for my parents to watch me write my own novels and draw my own comic books and even excel at extracurricular like dance and theater, yet also watch me dissolve into tears halfway through a math problem.

And I want to make it clear that it was pretty much true laziness. With endometriosis, symptoms start around puberty and I had the good graces to be a late bloomer. I didn’t have a period until I was 16 years old. At 17, I started complaining about more pain than I thought I should be in (but I didn’t really know, since I was new to the whole womanhood game). Occasionally went to a doctor about it. Ended up satisfied to learn it wasn’t anything serious, then went back to ignoring it. Finally when I was 18 and out of high school, I had my first run to the ER with real severe pain, and that was the start of my road to discovering endometriosis. The moral of the story is that until I was 17, there was no one to blame for my laziness but myself.

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In college, I was simultaneously learning to be fully responsible for my schoolwork with no pushing from parents or teachers while figuring out how this whole chronic pain thing worked. Consequently, I was always wondering if I was really too sick to do certain things, or if I was being my notoriously lazy self.

By this time I’d stopped thinking of myself as really lazy. Really “lazy” implied that I never worked hard, and that just wasn’t true. I had always worked hard diligently and persistently if it was on something that I had decided I wanted to do because I liked it. I went from being the worst person in my colorguard at the beginning of the year to being the youngest person to become colorguard captain in the history of my high school. I wrote my first full-length screenplay during my senior year of high school. I read the entire Harry Potter series and Lord of the Rings series multiple times before I finished junior high. I read a large, heavy tome about King Arthur when I was just 7 years old. Dad always says it was amazing because the book was as big as I was.

So, I was selectively lazy. And I could live with that. But then things would happen where I would squint at the blurred lines between being really lazy and being too sick to do something. When I failed at an assignment or missed a deadline, I’d wonder ok, was I really too sick or was I being too lazy?

And if I couldn’t figure it out, then of course my teachers couldn’t.

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When I failed math twice in college – yeah, that was mostly me being lazy.

But when I failed my French placement exam, I was so sick the day of the test that my husband had to carry me back to the car afterwards. I barely remember actually taking it. So I was probably too sick for that, really. Not that I’ve ever been very strong in French.

See? I’m pretty used to blaming myself for these things. Everyone always has, including me.

Then there was this one class – Storytelling. I shared one of the stories I wrote for that class here. Storytelling is something I am not lazy about. I force myself to write as often as possible, and I’ve trained myself to write even when I’m not feeling particularly “inspired.” If I could be a professional storyteller, I would. For now, I settle for writing screenplays and this blog at night when I’m not at my day job.

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So no. I wouldn’t do poorly in this class because of laziness. In fact, I was a special student – this was a graduate level class that I begged to be let in to. The class was an online course, and since I worked for the online course department in college, I had worked with this professor and gotten to know her and she said I should take it, regardless of my undergrad standing.

So why would I do all that and then just be like “meh, I’m just not going to turn anything in.”

The professor who runs the course rarely actually interacted with me. As is oftentimes the case, she provided the material while all communication and grading was done through teacher aids. And after a few missed deadlines, they were quick to label me as lazy.

“There’s a reason this is a graduate class – we don’t have time to deal with lazy undergrads. Either start working or drop out.”

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Ouch.

I was enraged for a few days, but quickly fell back into doubting myself. How many teachers had rightfully labeled me as lazy? This is an online course – it’s easy to ignore. Was I being lazy?

So I never did anything about it. I did the best work I could and ended up passing the class just fine, I’m pretty sure I wound up with a B or something. Not bad at all. Sure, I missed some assignments completely, but since I got As on everything I got in it turned out okay.

Perfect scores and missing assignments does, I suppose, look like laziness. It even looks like laziness to me.

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So nowadays I have spells of chronic tardiness to work and sometimes the house just goes all to hell because housework falls behind. And I still spend a lot of time wondering when I’m being lazy and when I’m really sick.

The world may never know.

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Harrison Bergeron by Kurt Vonnegut, Jr.

I’m kind of cheating and posting a short story today. The holidays are in full swing and I’ve been busy as a bee. I’m also about to transition to a new doctor – which, as I’m sure you know, is a very stressful process. So I don’t have time tonight to write you a “real” post.

That’s why I’ll be posting the text of a short story that is near and dear to my heart. I first read this story back in junior high and, as I blossomed into a full-fledged English major, it has kept its spot among the “classics” in my mind right along Edgar Allen Poe’s short stories. Now that I’m coping with chronic illness, I think on this world quite often. Particularly the image of the ballerinas – I used to be a dancer. And sometimes I feel like I’m trying to perform a ballet with weights on my ankles and arms. Chronic pain feels a bit like that.

I also smile when it describes Harrison – who is the most severely handicapped. He wears a hideous mask and weights and speakers to disrupt his thoughts because he was naturally THAT smart, strong, and talented.

I like to think that perhaps God hands out illness in a similar fashion – those of us who are just a bit too awesome need a little handicapping, to make it more fair for those poor normal people. 😉 It’s a fun thought, anyway.

So without further ado, please enjoy Harrison Bergeron by Kurt Vonnegut, Jr. and let me know what you think of it in the comments!

handicapped_ballerina_by_thunderscape_7-d5tgwo8(click the photo for more information on the artist)

THE YEAR WAS 2081, and everybody was finally equal. They weren’t only equal before God and the law Continue reading