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Bravery To Go Far

Peter Simmeth
Lake Forest College
Lake Forest, Illinois 60045

While film has been able to take our imagination to many diverse and fascinating places over the century, during its search for the new and extraordinary, it has often found itself avoiding the terrifying and horrid aspects that can occur in a normal life. Still Alice and The Diving Bell & The Butterfly are unique in their unwavering fearlessness to explore not the imaginary tales of aliens and demons as other movies do but the horrors that can be found in the mind as well. Still Alice, directed by R. Glatzer and W. Westmoreland in 2014, reveals the despair and  desolation as Dr. Alice Howland’s (Julianne Moore) identity of an  educated linguistics professor is destroyed by early onset familial  Alzheimer’s. The Diving Bell & The Butterfly, directed by J. Schnabel in 2007, takes you on a more personal journey, revealing the world through the eyes, and later, eye, of the paralyzed yet motivated Jean - Dominique Bauby (Mathieu Amalric), who is unwilling to see the end of his motor abilities due to locked - in syndrome at the end of his life. Because of this willingness to explore the lives of those usually shunned and ignored by society, these films are able to thoroughly display the effect of these disorders on the identity and relationships of the afflicted as well as their response to the disorders.  

Both stories center themselves around a single character each, namely Still Alice ’s Dr. Howland and Diving Bell’s Jean - Do. Both protagonists’ initial reactions to their diagnoses are full of despair, and the audience is left contemplating the unfairness of their predicament. As Jean - Do screams in his mind and Dr. Howland cries to her husband, it is clear that there is nothing that can prepare one for the horror of these diagnoses. For Alice, her symptoms eventually end up in the loss of her job, her independence, and eventually her whole sense of self as she forgets all the relationships she had. Jean - Do’s experience with locked - in syndrome is even more effective in revealing the experience of the one afflicted due to the usage of the first - person point of view and stream of consciousness narrative method. Seeing the world using one eye, unable to speak or move the camera just like Jean - Do, the audience is trapped and through that can fully understand how this condition works. There is a primal fear that is evoked when the doctors came to the conclusion to operate on you without your permission, and you watch as the knife descends on one of your eyes, something that is expressed perfectly in film.  

During diagnosis, both movies are also quite adept at informing the audience of the specifics of the issue, such as when Dr. Benjamin  explains to Alice “The red areas are high in beta amyloid, the buildup has probably been going on for several years… in a case like this with the onset being so early we would like to check for presenilin mutations, that would be an indicator of familiar Alzheimer’s disease” (27:00). After the genetic testing, Alice is diagnosed with Early - Onset Familial Alzheimer Disease, or EOFAD. EOFAD symptoms, which Alice portrayed, include memory failure, confusion, poor judgement, and incontinence and are caused by the increased production of beta - amyloid plaque and protein tangles (Bird, 1999). These conditions would be terrible to go through for anyone; however, Alice’s situation is made particularly worse by her status as a linguistics professor. The Diving Bell also accurately portrays the symptoms of disease, as Jean - Do experiences the interruption to the body’s muscles and damage to the centers in the brainstem important for facial control, breathing, swallowing, and speaking, symptoms that are common in locked - in syndrome. The methods of physical therapy used to increase his mobility also correlate with modern techniques (Brain Foundation, 2017). Due to their very accurate depictions of these disease, both movies are able to help the audience empathize with the afflicted, preventing disinformation while showing how the diseases can best be managed.  

Nothing exists in a vacuum, and what can be so devastating about diseases and disorders, especially those that effect the brain and the personality of the afflicted, is it can leave a large vacuum between what the person is and what the person was. Gazzaniga describes the  effect in The Ethical Brain: “‘Gramps’ is demented, a shadow of his original self. He is rusted out; his neurons are not working correctly even though he is still conscious… Gramps is a stimulus to your state of mind, not to his” (2005). Seeing a friend or relative wither away physically, in the case of Jean - Do, or mentally, in the case of Alice, is an incredibly  damaging experience and one that neither movie shies away from. Whether it be Jean - Do’s children or Alice’s husband, a disturbing web of hurt is created through these incurable problems as all involved learn to struggle through and create a new life in all the change.

While most of what I have mentioned so far has been doom and gloom, I want to let it be known that there is hope in these stories. While yes, it is true that these disorders are incurable, these movies are testaments to the resilience of the human brain and spirit, as even when faced with the destruction of their identities, the characters are able to remain strong and one might say even thrive. When I listened to the  personal story of a couple dealing with one of them having Alzheimer’s, what struck me more than anything else was that, according to them, life has not changed. Do they wish that this disease would disappear? Absolutely. But even through it all, they still work every day to make it a good day, and they are still able to find amazing beauty in their lives. The stories of these movies reveal a very similar beauty in the struggle, as the protagonists still have lives outside of their disorders. Life occurs in the details, in the moments of quiet contemplation and enjoying life together, sitting on the beach or writing a book. This beautiful hope remains.  

The ability of Still Alice and The Diving Bell and the Butter­fly to capture the human condition is highly laudable. As the audience struggles, laughs, cries, and hopes with the protagonists, they also learn key details of these very real and often misunderstood disorders. I highly recommend these two unique masterpieces made by Glatzer, Westmo­reland, and Schnabel, which have the ability to not only entertain viewers for two hours but also have a critical impact on society’s view as we look forward to the day when no one has to suffer of Alzheimer’s or locked - in syndrome.  


Bird, T. D. (1999). Early - Onset Familial Alzheimer Disease. GeneR­eviews. Retrieved from https://www.ncbi.nlm.nih.gov/books/ NBK1236/.  

Gazzaniga, M. S. (2006). The ethical brain: the science of our moral dilemmas. New York: HarperPerennial.  

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

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

Shannan, K. (2017). Locked - in Syndrome (LiS). Brain Foundation. Retrieved from http://brainfoundation.org.au/disorders/locked - in - syndrome - lis.


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