“Ode to Joy” Movie Review From A Person Living with Narcolepsy with Cataplexy

by julie on August 9, 2019

Today, the new feature film, Ode to Joy opens in select theaters (in New York and Los Angeles) and releases via video on demand across the United States. Ode to Joy is a movie about a man, Charlie (played by Martin Freeman) navigating romance while living with narcolepsy with cataplexy.

I was not involved in the development or filming of this movie, but I’ve been interested since the film was announced in 2011, based on the This American Life segment “I’m Fallen In Love and I Can’t Get Up.” This past April, I attended a showing of Ode to Joy at the Phoenix Film Festival, with Project Sleep board member, Ed Sweet.

As President & CEO of Project Sleep, seeing the film as soon as possible was important to me. Representations of narcolepsy in film provide valuable insight into public perceptions and understanding of the condition. For many individuals, cinematic depictions of narcolepsy may be their only exposure to the symptoms. Thus, patient-driven organizations like Project Sleep benefit from being aware of movie portrayals and joining the conversation as much as possible.

As a person living with narcolepsy with cataplexy myself, I was nervous to see the film. Generally, I close my eyes when clinicians play videos of cataplexy at conferences. Also, I have a short YouTube playlist of other people’s cataplexy episodes and inevitably, tears stream down my face watching these.

Going into seeing the film for the first time, my burning questions were:

1.) How will the movie depict and describe cataplexy? 
2.) How will the movie depict and describe narcolepsy?
3.) How will it depict treatment?
4.) How will it depict the condition’s impact on life? 
5.) Will there be resources exemplified during the film or offered at the end?
6.) Will the film help to raise awareness and/or reduce stigma?
7.) Will I find the movie funny?

Here are my responses. WARNING: from this point on, this post contains spoilers.

1.) How will the movie depict and describe cataplexy?

Physical manifestations: 
I was curious to see how Martin Freeman might act out cataplexy on camera. Cataplexy is such a unique form of muscle weakness/paralysis that can be so sudden and jerky, even I find it hard to “re-enact” on purpose, even having lived with it for over 14 years now.

The physical manifestations of cataplexy in Ode to Joy ranged from accurate (i.e. a knee-buckling and crumbling inward/downward to the ground) to inaccurate (i.e. rigid plank tumbling backward). I would love to know how Freeman prepared for this role – what examples he studied and what instructions or coaching he received.

Cataplexy descriptions:
The film opens with a definition of cataplexy appearing on screen. From here, cataplexy is defined about 5-8 times throughout the film by various characters. These descriptions ranged from accurate (doctor’s description) to inaccurate (with the brother saying multiple times that emotions make his brother “pass out.”) 

The opening definition says cataplexy is a “neurological disorder” and film synopsis describe cataplexy as a “rare disorder.” Cataplexy is a symptom of narcolepsy, a neurological condition affecting 1 in 2,000, or about 3 million people worldwide. Slight error? More on this later. 

Emotional triggers:
Charlie’s biggest emotional trigger for his cataplexy is “joy.” So, what is joy? This seemed to include: romantic feelings, witnessing acts of love or kindness, seeing babies and puppies, and thinking fondly of a beloved passed relative.

These triggers both resonated with me and didn’t at the same time. For me, my cataplexy’s triggers are much more situational depending on layers of irony, human connection and communication. For example, I don’t think just any cute puppy would cause me to have cataplexy, but if I saw a cute puppy that was a doppelgänger of my childhood poodle, Clifford, and I tried communicating about this, this might cause cataplexy. 

Romantic feelings is an interesting one. As I describe here, sexual excitement/orgasm triggered my cataplexy before I started treatment, but this was more of the actual “getting busy” – than just thinking about “getting busy.” (Sorry for talking about my sex life, mom!)

While triggers do vary from person to person, this paper describes the most common triggers as: laughing excitedly, making a sharp minded remark, telling a joke, and before reaching the punchline of a joke. I mention this because there were a couple scenes involving “witty banter” that felt like big cataplexy triggers to me, yet Charlie had none. I’ll be curious if others notice these scenes!

Avoiding cataplexy:
Throughout the movie, we watch Charlie try to self-regulate his thoughts to avoid “joy.” His tactics included listening to serious music (resonated), thinking of tragic world events (resonated less), and putting thumbtacks in his shoes on a date (ouch! nope!). However, there is a lot of truth to the concept of trying to self-regulate thoughts and emotions to avoid cataplexy.

Toward the beginning of the movie, we follow Charlie on a walk to work, watching him attempt to keep himself “in check” emotionally. The almost video game-like quality of this scene felt extremely accurate to me as a snapshot of what it is like to navigate space on the verge of severe cataplexy. In my memoir, I described a similar experience: 

“I walked slowly along the concrete sidewalk toward the hotel, the weakness was strong and close, waiting to push the ‘release’ button and drop me. 

I kept my head down, walking through the hotel lobby and into the elevator. On the ride to the 10th floor, we were silent. When the elevator stopped, I existed first and focused my gaze on the crimson red carpet. When I turned the corner onto the final stretch to our rooms, I reached into my purse for my key card, thinking ‘I’m almost there! I made it!’

The small satisfaction flipped the switch. I collapsed with my torso over my legs.” –Wide Awake and Dreaming: A Memoir of Narcolepsy (pg.  146)

Consciousness during cataplexy:
Due to some of the cataplexy depictions and descriptions, I believe viewers will get the impression that emotions cause Charlie to fall asleep or “pass out.”

Remaining conscious during cataplexy is a key factor that helps doctors distinguish cataplexy from other falling-type episodes like seizures or fainting. During a full-body episode of cataplexy, the individual is still aware of their surroundings and able to hear what’s going on around them, even if unable to move or speak for a few seconds up to a few minutes.

I do think that, by the audience getting the impression that Charlie is falling asleep or passing out during cataplexy, this makes cataplexy seem more light-hearted than the real-life experience.  For me, remaining conscious in a paralyzed body is what makes full-body cataplexy so terrifying. The scene from my memoir above continues to describe this:

“I wasn’t sure I was okay, but I wanted to tell them I was ‘there.’ I couldn’t breathe well in this hunched position. I tried inhaling deeper but even this was out of my control. Could I suffocate?

Experiencing life through a pinhole of consciousness alone, without any physicality to back it up, I was so far  from myself and wondered which shore I was closer to — life or death?”  – Wide Awake and Dreaming: A Memoir of Narcolepsy (pg.  146)

2.) How will the movie depict and describe narcolepsy?

I believe narcolepsy is mentioned once or twice in Ode to Joy, but I don’t think it’s explained that cataplexy is one of five major symptoms of narcolepsy— and that the other symptoms include: excessive daytime sleepiness, hypnagogic and hypnopompic hallucinations, sleep paralysis, and disrupted nighttime sleep. 

The Basic Symptoms of Narcolepsy Explained!

The film’s focus on cataplexy appears to be a “poetic license” departure from reality. One cannot have cataplexy without having narcolepsy (except in extremely rare cases of cataplexy secondary to other very serious neurological conditions like Niemann-Pick type C and Prader Willi Syndrome). Interestingly, individuals can have a form of narcolepsy that does NOT include cataplexy, this is called “type 2 narcolepsy without cataplexy.”

3.) How will it depict treatment?

One medication is mentioned early in the film, but Charlie expresses having intolerable side effects. I got the impression he was not using traditional treatment options, instead opting for unconventional strategies (like the thumbtacks, ouch!). I would’ve loved to see Charlie move toward more optimal management during the film, perhaps inspired by his love for Francesca… Perhaps realizing that accepting help is a form of bravery, not weakness.

It is important for viewers to know that there is no cure for narcolepsy, but treatment options are available today and can reduce symptoms of narcolepsy with cataplexy. Treatment for symptom management varies widely by person and it can take a long time to find an optimal combination.

4.) How will it depict the condition’s impact on life? 

Almost everything we learn about Charlie’s motivations seems tied to avoiding joy to avoid cataplexy — from his choice of profession to his monotone wardrobe. Audiences will get the impression that cataplexy severely impacts Charlie’s life. (See more on this point in the stigma section below.)

The exploration of cataplexy’s impact on Charlie’s relationships was one of the more intriguing aspects of Ode to Joy for me. These dynamics stood out: 

  • In the hospital, when Charlie and Francesca finally talk about his cataplexy, Francesca laughs and Charlie replies twice to say, “It’s not funny.” I wanted Francesca to take his condition seriously, yet this awkward imperfect interaction did speak true to my experience of getting inappropriate responses (usually people laugh more upon learning I have narcolepsy, not so much when learning about my cataplexy, although occasionally someone jokes that they will “be careful not to be too funny.” I smile and nod, since at least the person is listening, which I appreciate.)

  • Charlie’s brother, Cooper, seems to look out for him throughout to film, and I loved this dynamic. I smiled during the scene when the doctor tells Francesca that Charlie has a “serious condition,” and Cooper interjects something like, “some might call it a cute character quirk” to spin the news more positively. Also, the scene toward the end when Cooper described kids laughing. This was heart-felt moment that had me in tears (before the cataplexy tumbling over railing sequence that left me scratching my head).
  • I liked how Charlie’s experience made him empathetic about other people’s illnesses. I think many people with narcolepsy feel that their experience has made them more empathetic.

(Read about my experience: dating with narcolepsy and Valentine’s Day with cataplexy.)

5.) Will there be resources exemplified throughout or offered at the end of the movie?

We see Charlie interact with a doctor who seems familiar with his case (hopefully a neurologist or a sleep specialist). I did not notice other resources mentioned or exemplified during the film or offered at the end.

However, Project Sleep’s Ode to Joy webpage lists important resources and we were thrilled to work with the film’s team to add a resource page on the movie’s website (under development).

6.) Will the film help to raise awareness and/or reduce stigma?

Raising awareness:
Well, this is a huge question worthy of a post at a later time. My opinion, at this point, is that this film will raise some significant awareness about cataplexy because of the focus on the emotional triggers, something the general public knows so little about. I believe that if I had seen this film back when I was experiencing mysterious “knee buckling with laughter” and “my head falling back during sex,” there might have been just enough accurate aspects included in this film to inspire me to google cataplexy and find “narcolepsy with cataplexy.” 

In the very big picture, if people currently think that narcolepsy = falling asleep while standing or in the middle of a conversation, I think people who see this film may think cataplexy = a version of narcolepsy in which strong emotions lead to falling asleep. Is this an advancement? I’m not sure, time will tell.

Reducing stigma:
I do not believe this film will reduce stigma for those living with the condition. Situations vary greatly from person to person, but I think it is safe to say that Charlie’s experience is not “in the middle of a wide range” example, especially with  the current treatments available in the U.S. in 2019. His experience felt more typical of someone navigating cataplexy before finding his diagnosis. 

Also, as I mentioned earlier, almost everything we know about Charlie seems related to avoiding cataplexy.  While this shows that the condition majorly impacts his life, I don’t think we learn enough else about Charlie to help us foster empathy and understanding on a more basic human level. I can explain more about this another time.

7.) Will I find the film funny?

In my opinion, the movie was very funny at certain parts. The supporting actress Melissa Rauch stole the show for me. Basically, because Charlie is getting cataplexy every time he’s around the hot female lead, his brother suggests Charlie try to date someone more…. “pleasant” who doesn’t get him quite so excited, and that is Melissa Rauch’s character, as a “pleasant” lady Charlie tries dating.  To me, she knocks this role out of the park.  

A lot of the other humor revolves around sexual stuff and Charlie avoidance of happiness. The final two depictions of cataplexy in the movie got a lot of laughs in the theater but for whatever reason, those two examples were not funny to me and left me disheartened at the end. 

Looking back, here are the five things I wish Ode to Joy viewers knew about narcolepsy with cataplexy:

1.) Cataplexy is sudden episodes of muscle weakness often triggered by emotions like humor, surprise, or anger. The severity of these episodes vary from a slight knee buckling or neck weakness to falling to the ground for a few seconds to several minutes. During a cataplexy episode, the person remains fully conscious and aware of their surroundings, even if unable to speak or move. 

2.) Importantly, cataplexy is a major symptom of narcolepsy, a chronic neurological condition that involves other symptoms such as excessive daytime sleepiness – that can result in difficulty focusing and maintaining alertness, along with sleep paralysis and confusing hallucinations when falling asleep or waking up.  And some people have a form of narcolepsy without cataplexy.

3.) Treatments are available and can reduce symptoms of cataplexy and excessive daytime sleepiness. Approaches to treatment vary by person and it can take a while to find an optimal combination. 

4.) Narcolepsy can be hard to detect but help is out there. If you think that you or a loved one may be experiencing symptoms of narcolepsy with cataplexy, please consult a board-certified sleep specialist. Locate a AASM Accredited Sleep Center.

5.) Charlie is not alone! People living with narcolepsy are everywhere, as the condition affects 1 in 2000 people, including about 200,000 Americans and 3 million people worldwide, including many children.

Your voice matters!

In conclusion , I found Ode to Joy an interesting mixture of funny and heartfelt, accurate and inaccurate. I am so curious to hear what you think! Also, please remember that opinions may vary widely in our community and that is okay and to be expected. Other disease communities have faced similar situations, the cystic fibrosis community faced this recently with the film Five Feet Apart. Let’s try to remember we are all on the same team and that everyone’s thoughts and feelings are valid. Your opinions matter. Your experience matters. Please join the conversation and share your story!

While Project Sleep was not involved in the development or filming of Ode to Joy, we have been busy preparing resources to help the community talk about the film and raise awareness surrounding the release. Check out Project Sleep’s Ode to Joy resource page here. Also, Project Sleep was able to connect with the film’s team over the past few weeks and collaborate on an awareness effort. I cannot wait to share this with you soon, stay tuned!

Share the PSA:

Project Sleep proudly partnered with IFC Films and Ode to Joy Director, Jason Winer, to create a PSA raising awareness about narcolepsy with cataplexy. Please share with your friends and social networks to raise critical awareness and reduce delays to proper narcolepsy diagnosis.

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