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Eukaryon

Dive In: the Indelible Emotion for Science

Ondine Berg
Lake Forest College
Lake Forest, Illinois 60045

It’s hard to understand neurological diseases without physically going through one or witnessing them firsthand.  Still Alice and The Diving Bell and the Butterfly are two movies that attempt to show what it’s like living with a neurological disease. Still Alice is directed by Richard Glatzer and Wash Westmoreland in the Killer Films Studio. It was released in 2014. Julianne Moore plays Alice, the main character. Alice’s husband, John Howland, is portrayed by Alec Baldwin. Kristen Stewart plays one of Alice’s daughters, Lydia. Stephen Kunken plays Alice’s doctor, Dr. Benjamin. In Still Alice, Alice learns that she has familial Alzheimer’s Disease. The film follows the progression of the disease by showing the worsening symptoms of Alzheimer’s as time goes by (Glatzer & Westmoreland, 2014). The Diving Bell and the Butterfly is directed by Julian Schnabel in the Canal+ Studios. It was released in 2007 in France and 2008 in the United States. In this film, Jean-Dominique Bauby (Jean-Do), the main character, is portrayed by Mathieu Amalric. Marie-Joséphine Croze plays Henriette Durand, the speech therapist who develops a system of communication for Jean-Do. Anne Consigny plays Claude Mendibil, who transcribes Jean-Do’s blinks into a book. This movie explores what one feels while suffering with Locked-In Syndrome. Jean-Do learns he has this rare condition after an accident and realizes his whole life has changed. He must adapt. The movie shows how he is able to write an entire book while suffering from Locked-In Syndrome (Schnabel, 2007). While Still Alice communicates the neurology of Alzheimer’s Disease more effectively than The Diving Bell and the Butterfly communicates the neurology of Locked-In Syndrome, The Diving Bell and the Butterfly uses a unique first person perspective that forces viewers to develop an emotional connection to the characters which makes it a more memorable movie and results in more retention of scientific learning. 

Imagine finding out you have a disease where you will lose yourself, your memories, and your basic identity. Now, imagine you have to tell your children that they have a 50% chance of getting this disease because you may have passed down a mutation (2014, 27:04). Alice, a loving mother, is forced into this situation. Glatzer and Westmoreland’s Still Alice is very effective at communicating the symptoms, causes, and treatments of Alzheimer’s disease. From the beginning of the movie where Alice forgets a couple words to the end where she loses her self identity, viewers see each stage of Alzheimer’s and how severe the symptoms are (2014, 02:15) (2014, 1:00:07). George-Hyslop’s Piecing Together Alzheimer’s opens with a description of how Alzheimer’s symptoms progress. First, patients forget a detail or two, then they can no longer follow conversations. Later, they may find that they don’t remember simple things they’ve known their whole life, like finding their way home or a room in their house. Eventually, they may not be able to remember the faces of those closest to them (George-Hyslop, 2000). Alice follows a very similar progression. Following her MRI results, Dr. Benjamin suggests that Alice take a PET scan (2014, 19:35). Her scan shows high levels of Beta-Amyloid, one of the two major compounds associated with Alzheimer’s (2014, 25:10). Since Alice is so young, Dr. Benjamin suggests that she take a DNA test to see if she has familial Alzheimer’s and therefore the Presenilin mutation (2014, 25:10). Alice finds out she has the Presenilin mutation. George-Hyslop’s essay discusses the significance of a mutation on the Presenilin 1 and 2 genes as being linked to familial Alzheimer’s. Alice tells her family what medicines Dr. Benjamin prescribes her: Aricept and Namenda (2014, 27:04). Thomas and Grossberg’s Article shows that Namenda can be used to treat moderate to severe AD (Grossberg & Thomas, 2009). Aricept is a cholinesterase that can also be used to treat, “severe, or late stage disease” (Casey D., 2010). In all, this movie gave a great scientific description of what it’s like to live with Alzheimer’s. 

You wake up one day, barely conscious of your surroundings. You don’t know where you are, nor who’s around you. You slowly bat your eyes as you regain consciousness and try to speak but no one can hear you. You are trapped: Locked-In syndrome. This is what Jean-Do experiences in the first scene of The Diving Bell and the Butterfly (2007, 02:03). This movie is emotionally captivating and extremely memorable, but it does not explain Locked-In Syndrome as well as it could have. Schnabel’s clever use of the first person in Jean-Do’s perspective paired with Jean-Do’s narration truly demonstrates the limitations of Locked-In Syndrome. Locked-In Syndrome is a condition in which a traumatic brain injury results in paralysis in all four limbs. Patients only retain the ability to blink and move eyes up or down (Laureys, 2005). The movie begins solely in Jean-Do’s perspective. As a viewer, all you want to do is jump out and tell the doctors Jean-Do is completely conscious and has almost perfect memories. According to Schnakers, it can take 2.5 months to 6 years (in extreme cases) for doctors or family members to notice that patients are actually conscious (Schnakers, 2008). The Diving Bell and the Butterfly does not show how challenging it can be to detect consciousness. When the staff finds out Jean-Do is conscious, Henriette, a speech therapist, steps in to create an alphabet system to give Jean-Do a communication method (2007, 22:29). Jean-Do’s experiences show the immense struggles his family faces; perhaps most powerfully demonstrated when Jean-Do receives a phone call from his father (2007, 1:19:31). While the film creates an unparalleled emotional experience, viewers never learn what parts of the brain are no longer functioning nor what drugs help alleviate the symptoms. The film only shows the steps one can take to improve quality of life. Despite his condition, Jean-Do is able to write a book through a transcriber named Claude. As Claude begins to write down Jean-Do’s thoughts, one begins to realize how powerful the brain is, and how in the worst situations, there is hope (2007, 45:33). 

Both movies are worth watching to gain more knowledge about how problems in the brain can affect people in such radically different ways. In conclusion, Still Alice provides a much more scientific approach to neurological disease than The Diving Bell and the Butterfly. This said, The Diving Bell and the Butterfly is an unforgettable movie and the information you learn about Locked-In Syndrome stays with you. You are likely to forget Still Alice’s medical details because Glatzer and Westmoreland do not communicate the facts effectively. Still Alice makes you sympathize with Alice rather than empathize. You are not forced into Alice’s experiences, which makes you more likely to forget the scientific facts you learn since you create less of an emotional bond with Alice. Although The Diving Bell and the Butterfly explains less science, the knowledge you gain sticks with you because of the emotional attachment you develop with Jean-Do. You have only learned something if you remember it, and The Diving Bell and the Butterfly is indelible.   

 

References

Casey, D. A., Antimisiaris, D., & O’Brien, J. (2010, April). Drugs for Alzheimer’s disease: are they 

effective? Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2873716/

 

George-Hyslop, P., (2000). Piecing Together Alzheimer’s. Scientific American.

 

Glatzer, R., & Westmoreland, W. (Directors and writers). (2014). Still Alice [DVD]. Culver City, CA: 

Sony Pictures Home Entertainment.

 

Grossberg, G., & Thomas, S. (2009). Memantine: a review of studies into its safety and efficacy in 

treating Alzheimer’s disease and other dementias. Clinical Interventions in Aging, 367. doi: 

10.2147/cia.s6666

 

Laureys, S., Pellas, F., Van Eeckhout, P., Ghorbel, S., Schnakers, C., Perrin, F., … Goldman, S. (2005). 

The locked-in syndrome : what is it like to be conscious but paralyzed and voiceless? Retrieved 

from https://www.ncbi.nlm.nih.gov/pubmed/16186044

 

Schnabel, J. (Director). (2007). The diving bell and the butterfly [DVD]. Burbank, CA: Touchstone Home 

Entertainment.

 

Schnakers*, C., Majerus, S., Goldman, S., Boly*, M., Eeckhout, P., Gay, S., … Laureys*, S. (2008). 

Cognitive function in the locked-in syndrome. Journal of Neurology, 255(3), 323–330. doi: 

10.1007/s00415-008-0544-0

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