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lilaswordsandthings · 6 years

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Terminal/Chronically Ill Characters in Literature & Media (A Writer/Survivor’s Perspective)

As someone who has struggled with chronic health issues and has also lost friends and family to variations of the same condition I was born with, characters that are like me and my loved ones, and relationships similar to those I had with the people I’ve lost are something that I naturally gravitate towards and pay particular attention to. However, I find that it’s so rarely done well… so let’s talk about it.

For the structure of this post I’m going to be talking about 4 examples, two bad examples, and why they’re so flawed, and two good examples and what they got right that the others didn’t.

For some reason, writers seem to find it difficult to pull off a (main or important) character with a chronic or terminal illness, especially when that character has some kind of relationship with a character who is either healthy or somehow medically better off.

Usually, what we get are things like Me before You (I apologize right now to anyone who enjoyed that book/movie but I really didn't) or Everything, Everything by Nicola Yoon, (which I liked but I still feel like it was a bad portrayal of what I'm talking about).

Now let me fully explain why these portrayals fail epically.

In Me Before You by Jojo Moyes the character William has been severely and permanently injured and is now wheelchair bound. He also wants to die. Yes, you read that correctly, this character has literally given up to the point where he can’t wait to just end it and there is no amount of effort by those who care about him that can convince him that his life is still worth something. This is problematic for a couple of reasons but firstly because he’s a horrendous example for anyone who either has been injured that way or knows and cares about someone who has. Secondly, he’s a total 100% STATIC character. His outlook doesn’t change in this story, at all. At the beginning he wants to die, and by the end the people around him have given up trying to change his mind. I mean, I get that he’s not really the main protagonist here, Louisa, his caregiver/girlfriend is, but that actually makes it worse! Not only do we have a completely static secondary main character; but we have a defeatist protagonist who literally gives up trying to save the man she supposedly loves. What kind of thematic message was the author trying to send here? I just…can’t get over how messed up this is…

Now, as I said above I personally enjoyed Nicola Yoon’s novel Everything, Everything and its film adaptation. However, I did have issues with it in terms of this topic for several reasons.

1. Bad research. This was largely corrected in the film (or at least glossed over enough that it wasn’t really noticeable) but the Main Character Maddie’s illness, as described in the book, is not SCIDS (Severe Combined Immune Deficiency Syndrome), they tell you she has SCIDS but in terms of what they’re actually describing? It is actually presented as matching an even lesser known disorder called Mass Cell Activation Syndrome. When I first read it I tried to rationalize it as (spoiler alert) being that Maddie’s illness isn’t real and is a figment of her mentally ill mother’s mind, her mom can make up her own rules and boundaries in terms of Maddie’s condition and this was yet another subtle hint at the hidden truth. However, honestly, I don’t think the quality or accuracy of the book lends itself to Yoon pulling that off quite this well if that’s what she was going for; and it’s a shame.

2. She’s not really sick! This goes off of my last point but the fact that she turns out to have been fine this entire time cheapens all the drama and risk that came before that revelation, including her relationship with the novel’s male lead, Ollie. Which is why it’s a terrible portrayal of that kind of relationship, because the barriers and hoops they have to fight their way through to be together just *poof!” disappear. That’s not life! Since Mass Cell Activation Syndrome can appear and/or change at any moment and spontaneous recovery is at least theoretically possible, we really could have had something if Maddie had actually had the condition that was actually described in the book and you know, really had it at some point but then her mom kept it going because she’s incredibly paranoid and not right in the head. Sadly, however, no… that’s not what we got.

This lack of honest and positive representation for people with chronic illnesses, the spectrum of form and severity even a single condition can take, and the relationships between the chronically ill and those with a different health status than them, fortunately, is beginning to improve. Two of the best recent examples of this that I can think of are John Green’s novel The Fault in Our Stars, and the Manga Your Lie in April originally created by Naoshi Arakawa and brought to life on screen by A1 Pictures and the stunning voice talents of both the original Japanese and English dub voice casts.

The Fault in Our Stars by author and YouTuber John Green is a beautiful story about two friends turned lovers who find meaning, support, safety, and even hope in each other when the universe seems to be conspiring to take everything else in life away from them, because well…cancer can do that… I loved reading and watching these two interact and the best part about it is that neither is defined by the hand life has dealt them, it has profoundly affected who they are and how they see themselves and the world, as of course, it would, and it continues to throughout the novel. However, we always see this in the context of who they each are, it never becomes who they are. That balancing act of being honest about what situations like that do to people is what is missing from so many works that attempt this kind of story and this is a great example of when it’s done right. There is, however, one that I feel is even better.

Your Lie in April originally written in manga form by Naoshi Arakawa is easily my one of my favorite series of all time and is probably the best example of chronic illness/relationships. Let me explain why.

Plot Summary

For those of you who haven’t seen/read it, let me give you a ballpark idea. Kousei Arima was once a competitive pianist and child prodigy, trained, brutally, by his abusive and terminally ill mother. Once a great pianist herself, she is now weak, wheelchair-bound, and running out of time, so she brutalizes her only son mentally, emotionally, and physically in her rush to train him to play the music exactly as written, knowing that this will allow him to succeed on the competitive scene and thereby support himself after she’s gone. Soon after his mother dies Kousei suffered a breakdown under the pressure and after that day, gives up music almost entirely until he meets the beautiful and vibrant Kaori Miyazono. Who is a violinist but plays with a freedom and grace that Kousei has never seen before, and it is her constant prodding that brings him back to the stage. Kaori however, has a secret. She has been diagnosed with an unnamed terminal illness that, as the story progresses, gradually robs her of her mobility and coordination and becomes an increasingly prevalent threat to her life.

Kaori is where this story really shines in terms of our topic because her journey with her illness is among the most human and genuine portrayals of a situation anything close to hers, that I’ve ever seen. For a few reasons:

1. Kaori is more than her illness. Again, we see how her illness has affected who she is and how she sees the world and her place and purpose in it, but it is never her defining feature. We also see who she is apart from it, her love of sweets, her upbeat and freewheeling personality, and of course her obsession with music.

2. How she copes: She’s had this illness for most of her life but the gravity of her situation doesn’t really sink in until she’s thirteen or fourteen and catches her parents crying in the hospital waiting room. To quote the Anime: “That’s when I realized I didn’t have much time.” And the moment she realizes this, she hits the ground running, determined to make the absolute most of every minute she has left, so that she can die with as few regrets as possible.

She doesn’t run from her illness, she keeps it from her friends until it becomes obvious for their sake, she fully accepts the reality of her situation and does what she can to make the best of it. This includes wanting to do something good for someone that’s going to matter, in the form of dragging Kousei out of his emotional funk.

That said, she’s not an angel by any means. She doesn’t suffer in silence the entire time, there are moments even before her friends find out that we see the cracks in her façade. We see her cry, and lament, and break down, and towards the end even start to give up. Even then though, unlike in Me Before You she doesn’t give up to the extent that she’s unreachable, all it takes is a kick in the pants (not literally) from Kousei and she renews her will to fight and go on as long as she possibly can. To quote the anime again: “Maybe I’m just greedy, but I want to dream again.”

3. The Ending: In the end of course, Kaori dies, the show takes a no holds barred realistic approach to the situation, there’s no miracle cure, there’s no misdiagnosis, nothing to save our heroes from the inevitable tragedy that will tear them apart. Unfortunately, as I know all too well, such is life. In life sometimes there are no magic answers, no way to save the day, only the harsh reality to swallow. The fact that this series was willing to attest to that, just makes it all the better.

4. Kaori X Kousei: Over the course of the story we see Kaori and the progression of her illness mainly through Kousei’s eyes and the tumult of emotions he goes through in reaction to it is not only realistic but beautifully done. At first, he notices little things here and there, her collapsing after their duet, how thin she is, the more obvious her illness becomes the more apprehension he feels at the possibility of losing yet another person he’s come to know and love. At one point, he even avoids her for a time, unsure of what to say or do, which while not the most admirable reaction, is a totally normal and human one.

Kaori sees him struggling emotionally and laments ever getting involved, wondering out load during one of his visits if it would be better had they never met, and giving him license after her impending death to forget all about her and forget everything they’d shared. By the end though, Kousei decides he could never do it, and chooses instead to cherish Kaori’s memory and let her continue to drive him forward in music and in life.

This last point is very, very important because this a question that everyone has to ask themselves at some point. Was it worth it? Is it better to love and to lose than to have never loved at all? What both positive examples have in common is they answer that question with a resounding YES!.

So what have we learned? We all know that one-dimensional characters are neither interesting nor realistic and should be avoided at all costs. An illness or disability does NOT warrant an exception to that rule. Or the rule about avoiding static or passive characters either. It’s nuts that we seem to somehow think it is.

#character development #writing #anime #review #writing advice #relationships #romance #media #culture

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