Narcolepsy in The Mysterious Benedict Society New Disney+ Series

by julie on July 3, 2021

A review of Ep. 1-2 written by a person living with type 1 narcolepsy with cataplexy. Please note: may contain spoilers.

Anyone else excited to watch Episode 3 of “The Mysterious Benedict Society” this weekend? Here’s my review of Episodes 1-2’s portrayal of narcolepsy!

On June 25th, the first two episodes of “The Mysterious Benedict Society” premiered on Disney+ as a mystery adventure series based on the best-selling young adult book series by Trenton Lee Stewart. The books and TV series feature four gifted orphans who are recruited by an eccentric man living with type 1 narcolepsy with cataplexy, Mr. Benedict (played by Tony Hale), for a dangerous mission to save the world from a global crisis. In the books, and presumably in the TV series, Mr. Benedict’s identical twin, Mr. Curtain (also played by Hale) has narcolepsy too. 

Watching the series is important to me because, for many people, Hollywood’s depictions of narcolepsy may be their only exposure to narcolepsy’s symptoms and impacts on daily life. Thus, narcolepsy advocates and patient-driven organizations like Project Sleep must be aware of cinematic portrayals and join the conversation as much as possible. In addition, a family show on Disney+ will influence a younger generation’s perceptions, which is particularly impactful as narcolepsy often develops in children and young adults who are around the same age as this show’s target audience. 

Key takeaways from my review (for the full review, scroll down)

  • What do I think overall? My feelings about the narcolepsy portrayal in this series are mixed. There are accurate and inaccurate aspects to the portrayal in episodes 1-2, but I do believe this depiction is unlike other Hollywood depictions because Mr. Benedict is a complex, wise and empathetic leader who viewers relate to and are cheering for.
  • Are the symptoms of narcolepsy portrayed accurately? In The Mysterious Benedict Society, two major symptoms of narcolepsy: excessive daytime sleepiness and cataplexy (muscle weakness/paralysis triggered by emotions) are inaccurately combined into one symptom. In reality, the two symptoms are different, the main and critical difference being that a person remains conscious during an episode of cataplexy, unlike falling asleep. While inaccurate, the Disney+ series did stick closely to the original book’s (also inaccurate) description of strong emotions causing Mr. Benedict to have “sudden and uncontrollable attacks of deep sleep.”

  • Will the TV series help to raise awareness? Viewers will likely be more aware of the word “narcolepsy” after watching The Mysterious Benedict Society and may realize it is a real medical condition. In the very big picture, if people currently think that narcolepsy = falling asleep while standing or in the middle of a conversation, viewers of The Mysterious Benedict Society series will think  narcolepsy = strong emotions lead to falling asleep. Is this an advancement? I’m not sure, time will tell.
  • Will the TV series help to reduce stigma? Unlike many other Hollywood portrayals of narcolepsy, I believe The Mysterious Benedict Society’s portrayal may reduce stigma for those living with narcolepsy. Audience members see that narcolepsy is an aspect of Mr. Benedict’s life, certainly a serious challenge, but it is not the only thing we know about him. He is characterized as a quirky leader, well-regarded by his assistants, and displays kindness, wisdom, and empathy. Plus, he’s trying to save the world from a global crisis! By having complexity and motivations unrelated to his narcolepsy, viewers who do not have narcolepsy will still relate to Mr. Benedict’s character, cheer for him, and even look up to him. Even if subconscious, I believe viewers may walk away with an understanding that narcolepsy could happen to someone like them—someone who shares their values and motivations, even someone they look up to as a leader.

Full review of Episodes 1-2

Sitting down to watch The Mysterious Benedict Society Ep. 1-2, my burning questions were:

1.) How will the series depict and describe narcolepsy with cataplexy? 
2.) Are the symptoms of narcolepsy portrayed accurately? 
3.) Will the TV series help to raise awareness and/or reduce stigma?
4.) How will the TV series portrayal compare to the books?
5.) Were patient organizations or people with narcolepsy consulted?

1.) How will the series depict and describe narcolepsy with cataplexy? 

We meet Mr. Benedict late in episode 1 and his “narcolepsy” comes into play quickly (timestamp 40:00). While laughing, Mr Benedict’s eyes close and he slumps backward in his chair. His three assistants spring into action to put a comfortable pillow behind his head, just as he sits up, opens his eyes and asks, “How long was I out for?”  His assistant, Number Two replies “Mere seconds, sir.”

Mr. Benedict explains to the orphans, “Well, here’s a helpful fact. I have type 1 narcolepsy with cataplexy. Quite severely, I might add. It’s brought on by extremes… you know, extreme emotions, mainly from a root of joy. Um, sometimes the absurdity of the universe, a good pun. Constance, apparently.” 

He begins laughing again, and Number Two hands Mr. Benedict a small piece of fabric. Mr. Benedict says, “This plaid is no accident. This particular pattern, it calms me.” One of the orphans, Constance Contraire responds, “Am I the only one who’s going to acknowledge that this is weird?”

Mr Benedict replies, “No, it is. It is.” 

At the end of episode 1, with alarms blaring in a stressful scene, Mr. Benedict says to the orphans, “Your responsibilities, uh, seem to have begun quicker than we thought… Uh oh.” He is standing, as his eyes close and his body falls sideways out of the camera frame. The episode ends.

Episode 2 opens with the alarms still blaring, and Mr. Benedict slumped over asleep on the floor. He awakes quickly and asks his assistant, Rhonda, “How long was I out?”

Later, 31 minutes into episode 2, there’s a heart-felt moment with Mr. Benedict standing and telling the orphans, “I’m so proud of you.” His eyes flutter and he starts to lean backward for a second before catching himself. 

Around 36 minutes into episode 2, Mr. Benedict is sitting on a log in the woods, talking to Rhonda about the orphans. With great excitement and emotion, he says,  “The bravery of these children, I have never seen anything like it… It’s such, such bravery.”

With that, his eyes roll back, eyelids close, and  he slumps sideways onto the forest floor. Rhonda and Number Two move him away from a nearby fire flame. Rhonda calls out “Mr. Benedict!” and Number Two snaps her finger over his face, as if to try to wake him up. 

2.) Are the symptoms of narcolepsy portrayed accurately? 

In The Mysterious Benedict Society, two major symptoms of narcolepsy: excessive daytime sleepiness and cataplexy (muscle weakness/paralysis triggered by emotions) are inaccurately combined into one symptom. In reality, the two symptoms are different, the main and critical difference being that a person remains conscious during an episode of cataplexy, unlike falling asleep. 

The emotional triggers described by Mr. Benedict (“extreme emotions, mainly from a root of joy. Um, sometimes the absurdity of the universe, a good pun”) are fairly accurate, but they trigger cataplexy, not sleep. Cataplexy is a major but little-known symptom of narcolepsy causing one’s muscles to become weak/paralyzed. The severity can range from a buckling of the knees or slackening of the jaw to fully collapsing to the ground. Importantly, even if a person falls to the ground during an episode of cataplexy, they are awake and aware of their surroundings, hearing people around them and feeling their body’s position, but unable to move for a few seconds up to a few minutes. Remaining conscious during cataplexy is an important aspect that helps doctors distinguish this from other medical issues like fainting or seizures, where there’s generally a loss of consciousness. 

Excessive daytime sleepiness is another major symptom of narcolepsy. Generally, a powerful sleepiness may come over a person during the day and, depending on the severity and circumstances, may cause an individual to fall asleep. However, this is often much more subtle and invisible than Hollywood’s comedic portrayals of falling over asleep. 

Personally, Hale’s narcolepsy “episodes” do not resonate with my experience because of the confused combination of two symptoms. To see real-life cataplexy, here’s a short YouTube playlistBy giving the impression that Mr. Benedict is falling asleep, it makes his “episodes” more light-hearted than the real-life experience.  For me, remaining conscious in a paralyzed body is terrifying.

Avoiding cataplexy: Mr. Benedict’s assistants hand him a scrap of plaid fabric in an effort to calm him down. In the book, he wears plaid suits for this reason. There is a lot of truth to the idea of trying to self-regulate emotions to avoid cataplexy, however I’ve never used a piece of fabric, but I suppose it is plausible. Beyond self-regulation strategies, it is important for viewers to know that treatment options are available and can reduce symptoms. Treatment varies widely by person and can take a while to find an optimal combination.

3.) Will the TV series help to raise awareness and/or reduce stigma?

Raising awareness: Viewers will likely be more aware of the word “narcolepsy” after watching The Mysterious Benedict Society and may realize it is a real medical condition. However given the strange combining of two symptoms into one symptom, I’m not sure that I would’ve recognized my own experience in Mr. Benedict’s portrayal when I didn’t know what was wrong with me. My sleepiness felt very separate from my “knee thing with laughter” and I never associated the two with each other. But perhaps there is enough info here to inspire someone to google narcolepsy to learn more.  

In the very big picture, if people currently think that narcolepsy = falling asleep while standing or in the middle of a conversation, viewers of The Mysterious Benedict Society series will think  narcolepsy = strong emotions lead to falling asleep. Is this an advancement? I’m not sure, time will tell.

I wish I’d seen resources mentioned in closing credits or on Disney+’s website. It is important for viewers to know: If you or a loved one are experiencing symptoms like Mr. Benedict’s, please consult a board certified sleep specialist. 

Reducing stigma: Unlike many other Hollywood portrayals of narcolepsy, The Mysterious Benedict Society TV series may actually reduce stigma for those living with narcolepsy. Audience members see that narcolepsy is an aspect of Mr. Benedict’s life, certainly a serious challenge, but it is not the only thing we know about him. He is characterized as a quirky leader, well-regarded by his assistants, and displays kindness, wisdom, and empathy. Plus, he’s trying to save the world from a global crisis! By having complexity and motivations unrelated to his narcolepsy, viewers who do not have narcolepsy will still relate to Mr. Benedict’s character, cheer for him, and even look up to him. Even if subconscious, I believe viewers may walk away with an understanding that narcolepsy could happen to someone like them—someone who shares their values and motivations, even someone they look up to as a leader. 

Why does it matter that we know more about Mr. Benedict beyond his narcolepsy? Stigma is a concept of othering people; that individuals with a certain identity or characteristic (like narcolepsy) separates or lowers their social status. When people realize that they still share similar experiences, values, or motivations with individuals with a characteristic like narcolepsy, there is common ground and shared understanding, which can lead to greater empathy, realizing that the characteristic they do not share (like narcolepsy) could still be something that could happen to someone like them or someone they care about, instead of separating and othering them. 

4.) How will the TV series portrayal compare to the books?

Full disclosure, I’ve read parts of the first book but not the full series. I’ve learned most about the series from my friend, Cassandra, a big Benedict fan, a Jack & Julie Narcolepsy Scholarship recipient, and Rising Voices of Narcolepsy speaker! And here’s a helpful Fandom page.

So far, the portrayal of narcolepsy in the TV series sticks close to the original book’s inaccurate description of strong emotions causing Mr. Benedict to have “sudden and uncontrollable attacks of deep sleep.” However, there are a few differences so far:

  • In the TV series, Mr. Benedict clearly states that he has a severe case of “type 1 narcolepsy with cataplexy,” which is accurate terminology that surprised me. However, the first book, published in 2008, only used the term “narcolepsy” and never mentions “type 1” or “cataplexy” at all. In 2008, saying “type 1” or “type 2” was not typical as that’s been a more recent development in terminology, so it’s not too surprising that the 2021 Disney+ series updated his condition name to “type 1 narcolepsy with cataplexy.”
  • Interestingly, Mr. Benedict mentions “the root of joy” as a strong emotional trigger. Joy is not mentioned in the original book. The book mentioned “emotions and laughter” which sticks more closely to real-life triggers of cataplexy.  The common emotional triggers are laughing excitedly, making a sharp minded remark, telling a joke, and before reaching the punchline of a joke. Mr. Benedict’s mention of joy is consistent with another recent cinematic depiction of narcolepsy. In Ode to Joy (2019), main character Charlie’s main emotional trigger for cataplexy was “joy.” Is it a coincidence or is Hollywood building off of another Hollywood depiction? 
  • Interestingly, Cassandra pointed out to me that in the prequel book, The Extraordinary Education of Nicholas Benedict, published in 2012, cataplexy is mentioned by name in a fascinating passage that seems to acknowledge the original error in combining the two symptoms by explaining that a younger Nicholas Benedict “discovered that what sometimes happened to him when he experienced strong emotions was known as cataplexy, and that his particular version of it was rare. When others suffered attacks of cataplexy, they were temporarily paralyzed but remained awake. Nicholas always lost consciousness. So I’m not just different from everyone I know, he mused. I’m even different from other people with narcolepsy.” 
  • We just met Mr. Curtain briefly at the end of Ep. 2, but Cassandra pointed out that Mr. Curtain wasn’t using a wheelchair. In the book, Mr. Curtain uses a wheelchair due to the severity of his narcolepsy/cataplexy symptoms.
5.) Were patient organizations or people with narcolepsy consulted?

I would love to know how Tony Hale prepared for this role – what examples he studied and what instructions or coaching he received. Project Sleep was not involved in the development or filming and from watching Ep. 1-2, I do not believe other patient organizations or individuals with narcolepsy were consulted. Not sure, but that’s my hunch.

In 2021, when social media easily connects people around the world and across industries and professions, I believe it should be standard practice for Hollywood writers developing portrayals of real-life serious chronic conditions to consult patient organizations and individuals living with the condition. Writers may fear that these consultations might hamper their creative process but I believe they will be fruitful and enrich the writers’ plot possibilities.

Another big mystery remains how the original author, Trenton Lee Stewart, got the idea to include narcolepsy in the story’s plot. Did he know someone personally with narcolepsy or did he find narcolepsy through research? The book’s portrayal is inconsistent so I am not sure.

Tell me what you think!

For upcoming episodes, I’m curious to see how Mr. Curtain’s narcolepsy is portrayed and if other symptoms (like hypnagogic hallucinations and sleep paralysis) will come into play. And I am looking forward to hearing your thoughts, please leave a comment below! 

For a younger generation, The Mysterious Benedict Society may be one of the defining portrayals influencing public perceptions of narcolepsy. While this portrayal is not perfect, I’ll take it any day over my generation’s unfortunate Deuce Bigalow Male Gigolo (1999). With new portrayals, increased collaboration, and representation in Hollywood (including projects like Anna Marr’s Walking Through Peanut Butter), my hope is that one day, Deuce Bigalow will be distant memory, like a Blockbuster store or a DVD. If this is the case, I will not be disappointed.  

Graphic by Julie Flygare and Project Sleep

I’m thrilled to share the news that Project Sleep just launched a new Sleep Disorders in Film & TV Database to track portrayals and help support future research. There is currently no published research addressing media portrayals of narcolepsy and other sleep disorders, like other conditions such as epilepsy, multiple sclerosis, autism, and Tourette’s syndrome. If you are aware of film or TV examples not already listed on our narcolepsy graphic or other sleep disorder portrayals, please fill out the Sleep Disorders in Film & TV Database form. Thank you!

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