Chronic Illness in Film: Ode to Joy
by Briana Livelsberger
Note: This review contains spoilers of the film’s plot.
There are many diseases out in the world, making it that the possibilities are endless in terms of creating a movie about a disease. The fact that movies are created about diseases is, in my opinion, a positive thing when the movies are done right. If one uses a lesser known disease as the focus of the movie, it increases awareness of the disease and makes it easier to believe it’s real. However, when a film is about a disease that is relatively unknown to the public, it can leave one wondering whether the disease is real considering that there are movies in which a disease is made up. However, Ode to Joy is not one such film about an imaginary disease.
Ode to Joy follows Charlie, a man who has cataplexy. At first, I wasn’t sure if this disease was real, mostly because I hadn’t heard of it before. Cataplexy is a disease that can cause muscle weakness/paralysis when one feels a strong emotion. These episodes of muscle weakness can be minor (face drooping) to severe (full body weakness followed by fainting). Cataplexy is caused by low levels of hypocretin (a chemical in the brain important in regulating the sleep-wake cycle) and often goes along with narcolepsy (Lee). As a result, an individual with cataplexy can end up in REM sleep (dream stage where the body is paralyzed) at any time (Sleep Foundation).
For Charlie, his cataplexy is triggered by happiness. As a result, he lives his life trying to keep himself from being too happy. The film opens with his sister’s wedding. Standing next to his brother (Cooper), Charlie tries to think of depressing, horrific things to keep himself from losing control and falling during the ceremony. However, he can’t help but feel happy for his sister so he inevitably loses control of his muscles and crashes into many objects and people before passing out. In reality, Charlie would actually have been seated for the ceremony but having him stand creates a dramatic way to introduce cataplexy.
Cataplexy affects his day-to-day life and the movie does a good job at showing these effects in a matter-of-fact way after the wedding scene. Charlie works in a library where things are usually tame and quiet. If he reads to kids, he reads them books such as The Velveteen Rabbit or Where Did My Sweet Grandma Go? When walking around New York City, Charlie makes sure to have depressing music (such as a funeral march) playing in his headphones so that he can distract himself from any heartwarming sights he may come across. When he takes Francesca (the female lead) out on a date, he takes her to a play called The Great Depression to keep himself from feeling giddy around her. After leaving the play, the first topic of conversation he brings up is about Francesca’s aunt (who is fighting cancer). For the sake of keeping himself from being happy, he ends up not dating Francesca and instead sets her up with Cooper. In that way, he can be around her without losing control and passing out since seeing her with Cooper makes him sad enough to negate the happiness he feels being around her.
There is a lot more that Charlie does throughout the movie as a result of cataplexy but, even with describing a portion of what he does, it is clear that Charlie takes managing his condition seriously. However, Charlie’s management causes him to avoid most of what could make him happy, partially because he is afraid to be happy. He pushes Francesca away out of this fear and makes his brother worry. This is refreshing because movies don’t often show the fears that can go along with the diseases and how the fear can have a bigger impact on life than the disease. The movie also shows that Charlie pushes against that fear and decides to have happiness in his life. Charlie deciding to find happiness in a way that won’t be dangerous also does something that a lot of movies don’t do. Some movies show happiness being found when a disease is “cured” or when it’s found out to be fake. Either way, it is often through a rejection of the disease that one finds happiness. In Charlie’s case, he embraces his disease and figures out a way to be happy that works for him.
In terms of accuracy, Ode to Joy does well with a lot of things. When explaining the disease, all the information used was information I was able to confirm on multiple medical websites. Ode to Joy also discusses actual treatments used for cataplexy rather than just having Charlie use some medication without any explanation like some movies do. Based on research I’ve done, Charlie’s cataplexy is severe in comparison to how the disease plays out for most people. While people can lose control of all muscles in their body and pass out afterward, usually specific muscles are affected and may not cause someone to pass out all the time. However, I think this was done both to deepen the risks that Charlie faces when trying to go after what he wants and to provide more dramatic scenes. In addition, since cataplexy is supposed to be triggered by strong emotions, small heartwarming acts causing him to nearly fall seems slightly exaggerated. Now, it is possible that, due to his inability to allow himself to feel happiness, his joy is stronger whenever he feels it than if he could feel joy without worry. However, it seems more likely that it is done to show that cataplexic attacks could happen anywhere, anytime.
Since the film provides accurate information on cataplexy and does a good job portraying it, there ends up being a lot of humor in the situations Charlie finds himself in. While having a disease isn’t funny, the movie does a good job showing how funny things can happen because of a disease rather than using the disease as a punchline.
Overall, Ode to Joy provides good insight into cataplexy and what it could be like for someone who has it. The film shows both how a disease can rule one’s life and how one can live their lives with their disease in a way that doesn’t take away from their happiness.