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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Book Review: The Mayo Clinic Guide to Your Baby’s First Year

If you saw my review of The Mayo Clinic’s Guide to a Healthy Pregnancy, you know how excited I was to read this. But this review will probably be much shorter and less glowing than that one. In a nutshell, this book is a bit superfluous. And coming from me, that’s saying something. I love reading and researching and will jump on just about any chance to do so, but in this case? Well, let’s jump right in.

There’s nothing really wrong with this book, it’s just kind of boring. Most of the information in it is a retread of info found in The Guide to a Healthy Pregnancy, and I would recommend reading that over this. Once you get past the first few months of having a newborn, there’s a lot less to worry about. Or at least, there’s different things to worry about. But you’re no longer in that stage where sleeping, eating, and falling are life or death situations. Once your little one’s a bit older, you rely more on common sense than needing to look up what to do.

The Pregnancy Guide’s chapters on the first few months offer great coverage of breastfeeding, immunizations, sleep training, and all those things. This guide really just elaborates, and I found the elaboration to not really be necessary.

One thing I did really enjoy about this book were the parts on what it’s like to be a new parent emotionally. It’s very cathartic to read that your feelings, especially negative ones and “baby blues” ones, are common and normal. And it offers good ways to cope. But again, rather than recommending this book, I’d lean more towards suggesting finding a book that exclusively focuses on parenting and feelings.

The more utilitarian information is all stuff that you’re gonna hear from your pediatrician. Developmental milestones, when to get immunizations, introducing solid foods, these are all going to be covered if you’re seeing a pediatrician regularly. Don’t replace that with a book, babies need all those checkups each month. Your pediatrician will tell you when your little one can start table food, and you can judge if you want to go ahead or wait on it.

If you don’t have a communicative pediatrician and can’t switch, or if you don’t have other mom friends or your own parents around to talk to, then maybe this book would be helpful to you, but honestly, once the baby is out and growing, you’re going to get floods of information from everywhere. From programs like WIC where you have to attend occasional classes, to alarmist facebook posts from well-meaning in-laws, you’re going to hear about most everything. Plus, that first year goes by so fast, you’ll hardly have time to research each step (or read a book, for that matter).

So yeah. My consensus is basically “meh.” There’s nothing bad or wrong about this book, it’s just kind of dull and an extra thing that you don’t really need to be fussing with in your child’s first year.

Sorry this wasn’t more exciting to read, haha. Meh reviews are hard. I’ve got a few more parenting/pregnancy books to read since I’m unexpectedly pregnant with #2 on the way. Stay tuned!

Sometimes People Suck

I love participating in WEGO Health’s twitter chats (follow @wegohealth on twitter to check it out). And each time, no matter what the topic that week is, the subject of losing friends seems to always come up. Chronic illness, whether physical or mental, tends to encroach on our social lives and that can bring out the worst in people. We don’t want to cancel plans or spend all of our time talking about our illness, but when we do, it would be nice to be met with understanding. Unfortunately, it can often break a friendship or even a romantic relationship.

Sometimes one too many cancellations causes a friend to give up on hanging out with you. Sometimes one too many suggestions to “think positively” or “try yoga” or “maybe if you just…” causes you to hit the unfriend button. Sometimes, after an awkward encounter with your illness, a friend or loved one “ghosts” you, falling off the face of the earth. Maybe they can’t deal with facing the idea of mortality when they see an incurable illness. Maybe their desire to “fix” you has made you feel unloved or unvalued, because as much as our illnesses don’t define us, they’re still a part of us. Maybe it was simply more baggage than they signed up for when they decided to be your friend/significant other.

It’s harsh. But it’s also true. Sometimes, people just suck.

A while back, I wrote a post on the story of Job, specifically looking at misguided attempts at “comforting” friends in hard times. Job is a bible story I think many people with chronic illness can relate to, and there’s verses that apply to losing friends as well.

Check out these excerpts from Job 19:

“He has alienated my family from me;

my acquaintances are completely estranged from me.

My relatives have gone away;

my closest friends have forgotten me…”

“My breath is offensive to my wife;

I am loathsome to my own family…”

“All my intimate friends detest me;

those I love have turned against me.”

When we go through something really tough, like an illness, sometimes it feels like everyone abandons you right at the moment you need them the most. Loved ones may be visibly drained by your experience, making you feel like a burden. When you stay home ill, it’s easy to feel forgotten. Illness is alienating. Healthy friends don’t know how you feel, and maybe you don’t know how they feel, either.

A more modern quotation that captures this can be found in the song “People Just Ain’t No Good” by Nick Cave.

“It ain’t that in their hearts they’re bad.
They can comfort you, some even try.
They nurse you when you’re ill of health.
They bury you when you go and die.

It ain’t that in their hearts they’re bad.
They’d stick by you if they could.
Aw but that’s just bull, baby.
People just ain’t no good.”

***

I know that it’s not everyone. I often say that, especially when it comes to dating, illness can be a good thing because it weeds out the insincere. At the end of the day, you’re left with people of heartier stock. True friends, true love. But when you care about the ones you lose, you don’t want to hear that.
Sometimes, people just suck.
Listen to some moody music, wallow in it, get mad, get sad, but then remember the true ones. Find them, because they’re out there.
But if you’re reading an article called People Suck, you’re not here for that, so yeah, people do suck. Most people.
But you don’t suck.

Official Enviroklenz Affiliate! MCS-approved Cleaning Products

Hey guys! I’ve talked before about how much I love Enviroklenz, and I’m still using their laundry products and air filters every day. You can read my thoughts in-depth by clicking here.

If you’re interested in getting some of these environmental protection products for yourself, and supporting this blog at the same time, I now have a handy button at the bottom of every page on this site! When you order using that button, I get a little commission and every little bit helps me keep this blog up for you guys. Plus you get some great, safe cleaning products for yourself. Using stuff like this helps lighten the day to day chemical load you put on your body, which lowers your chances of MCS and other chemical reactions and helps keep you healthy.

I’m also going to put a couple of big banners in this post since we’re here and they’re cool.

air purifier for allergies

Ya need to clean anyway right? Plus, you know that I wouldn’t put a permanent button on this website for any product I didn’t believe in and use myself. I’m not going to sell out on you guys – this button is really here for you. I hate shopping for cleaning stuff. I read the labels to try and be informed and usually can’t find a single thing with little to no harmful chemicals and fragrances. I don’t have MCS or eczema (if you do then you probably already use things like these) but I’ve always been sensitive to fragrances products, especially laundry stuff. So yes, I really am using this and it really has helped me.

I promise to stop talking your ear off about it now! Just know that handy button will always be down there just for you the next time you need cleaners or air purifier stuff.

Love you all! And OF COURSE don’t forget to make a rage comic and enter the #spoonieragecomiccontest! It’s free and there’s prizes! Go go go!

The Health Disrupter Journal from The Allergista!

The Allergista is one of my favorite bloggers, and I’ve talked about her many times on here. She was kind enough to reach out to me to give me a chance to try out her health disrupter journal and share it with you guys!

Now, I have a confession to make: she asked me to do this a looooong time ago. Like, months ago. And I have not adjusted well to keeping up with blogging and parenting a 1 year old. Add journaling on top of that and I majorly failed. But I wanted to complete the journal before writing this post, so… here we are, months too late but honest!

So this isn’t my first health-journaling rodeo. I’ve kept a diary of what I eat and my digestive reactions before, and I’ve also tried out a few apps to track symptoms along with diet, sleep, and other things. I have a love-hate relationship with journaling this way. It’s great because it’s shown me patterns in my health, and helped me to discern what foods/habits cause my pain to flare up, or cause my IBS to get bad. But it’s really hard, at least for me. The first few days go well. I’m excited and write down everything in detail. But after that… life happens. I try to jot down some notes at the end of the day, usually while half-asleep, and soon I miss entire days.

And of course, when I do get sick, journaling is hardest of all, and also most crucial. So this is a huge challenge for me. The great thing about journaling is that even small bursts can be helpful in solving health mysteries. So with the Allergista’s health disruptor journal, that’s exactly what I did. I journaled for a week or two at a time, then took a hiatus. Not by design, but because that’s kinda just how it happened. But I still solved some of my own health mysteries.

The journal has four basic parts: a daily log, a weekly notes section, a weekly summary of symptoms, and a monthly calendar. To be honest, I didn’t use the monthly calendar much, but only because I have another one that I keep all my appointments and life notes on. I know in this day and age, most people don’t have a monthly paper calendar posted up anymore, so this would probably be more useful to someone who didn’t have another system in place.

The daily log is set up for allergies, but is easily adapted to chronicle chronic pain or gastrointestinal problems. The only section I didn’t use much was logging skin problems, since that’s pretty exclusive to tracking allergies. But I liked the tally system of giving each symptom a number and totaling it. The higher the number, the “worse” a day is symptom-wise. This is great because when you’re in a flare, you can feel like “oh I’ve felt horrible all week” but looking at the numbers you can see that there are days where even though you have symptoms, you’re feeling a little better. That can be really encouraging, especially in a long flare.

I like the body location symptom tracker. I’m a very visual person, and I like to doodle, so it was fun and also informative. I could see pain “make its rounds” so to speak. I like that a lot.

Finally, the notes section. At first, this was the biggest chore, mostly because I was unsure what to put there. But I ended up using it as my place to pose questions and come up with hypothesis. I could look back at previous weeks and see if I’d proven my ideas or answered any questions.

The biggest health mystery this journal helped me solve actually had to do with anxiety. When I have a panic attack, it almost exclusively happens at night. My anxiety keeps me awake, and eventually builds until I’m sweating, pacing, and generally loosing my mind. I found out through journaling that there are two things that I thought were helping me that were actually contributing to my panic attacks.

One was drinking. I had gotten into a bad habit of always having a glass of wine at dinner or bedtime most nights, thinking it helped me relax. It kind of did, but on nights when I didn’t drink I was much more likely to sleep well. Stopping this habit didn’t completely eliminate my anxiety attacks, but it helped a LOT.

Second was reading. Yeah, the thing EVERYONE tells you to do when you can’t sleep! I adore reading, and I read paper books with no irritating backlights to disrupt my sleep cycle. But I think I must love it a little too much. I noticed I tended to have trouble sleeping after reading, and noticed that I get a little too into books to relax. I stay awake thinking about the book (especially suspenseful ones) and end up in the anxiety zone. Now, I’m careful to only read either books I’ve read before or calm, non-suspense/mystery/adventure books before bed if I read at all.

So what’s my final verdict? Health journals are great, and the Allergista’s is one of the best I’ve tried! If you’re like me and can only journal in spurts, remember that it’s better than nothing and you can still benefit from what you learn from it. I highly recommend this one for it’s organization, it’s tracking tools like tallying and body diagramming, and it’s coverage of all areas you need to track in an easy format. You can download it by clicking

HERE!

I hope you all check it out and give journaling a try if you haven’t already. You’ll be surprised what you can learn! Plus, if you have an attentive doctor, they may like to look over it and help you find patterns and give you advice.

Also, don’t forget to enter the #SPOONIERAGECOMICCONTEST! There are free prizes to win and I’ll let you in on a secret: there’s not much competition right now. So enter today! Google “rage comic maker,” choose your favorite, then create a comic that has something to do with health, chronic illness, allergies, doctors, medicine, or anything in between! Then upload it to twitter or instagram with the hashtag #spoonieragecomiccontest.

Can’t wait to see what you come up with!