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Who Knew so Much Could be Gained From Loss? Screen reader support enabled.
Lake Forest College
Lake Forest, Illinois 60045
The Diving Bell and the Butterfly and Still Alice are two movies that give insight into the lives of patients with neurological diseases. The Diving Bell and the Butterfly was released by Pathé Renn Productions in 2007. Directed by Julian Schnabel, the movie tells a true story of Jean-Dominique Bauby, played by Mathieu Amalric (The Diving Bell and the Butterfly,” 2007), after developing Locked-in-syndrome, a disease where the patient only has control over their eye muscles. Still Alice, directed by Richard Glatzer and Wash Westmoreland, was produced by Lutzus-Brown Studios in 2014. In this dramatic film Alice Howland, played by Julianne Moore (“Still Alice,” 2015), is diagnosed with Early Onset Familial Alzheimer’s Disease. The movie focuses on her life changes throughout the progression of the disease. I think that the films did a wonderful job of showing the effects of life with these diseases, however I do not think science behind the diseases was well explained.
Imagine waking up in a hospital room to doctors talking to you and asking questions, yet you are unable to answer them. You are fully aware of them, and you can answer in your head, but no matter how hard you try you cannot speak. This is the sad reality for Jean-Dominique Bauby. This movie follows his life after being diagnosed with Locked-in Syndrome after a cerebrovascular accident. A patient with this disorder is “aware and awake but cannot move or communicate verbally because nearly all voluntary muscles except those of the eyes are completely paralyzed” (Kolb, B., Whishaw, I. Q., Teskey, G. C., 2016, p,363). Due to this disorder Bauby could not continue his career as editor of Elle Magazine. He was able to write the book which he had promised before his accident thanks to the method for communication developed by his speech therapist. A powerful moment to me was Bauby saying, “Through the frayed curtain a wan glow heralds the break of day. My heels ache, my head weighs a ton, my whole body is encased in a kind of diving suit. My task is to write the motionless travel notes from a castaway on the shores of loneliness” (Schnabel, 2007, 46:20-46:49). In this quote Bauby feels like he is stuck in his body, unable to communicate with the rest of the world, as depicted through use of words such as encased, ache, and weighs a ton. Telling us that he feels like a castaway on the shores of loneliness is a great insight into his lack of communication ability.
Picture it… you are fifty, in the height of your career as a renowned college professor at a top university, married to the love of your life who is also a respected physician, and your kids are grown up, leading successful, happy lives. This is the fictional story of a woman named Alice Howland, a linguistics professor at Columbia University in New York. She was in her prime and then her world fell apart when her neurologist diagnosed her with Early Onset Familial Alzheimer’s Disease (Glatzer & Westmoreland, 2014, 27:18-30:20). At first, she would forget little things, such as how many eggs to put in a familiar recipe (Glatzer & Westmoreland, 2014, 20:37), and repeat or reintroduce herself to people (Glatzer & Westmoreland, 2014, 21:17). Forgetting small things eventually turned into forgetting everything and as she said during her speech for the Alzheimer’s Association New York Chapter, “I find myself learning the art of losing every day. Losing my bearings, losing objects, losing sleep, but most importantly losing memories” (Glatzer & Westmoreland, 2014, 1:16:03-1:16:21). Alzheimer’s Disease took so many things away from her as you can see from the repetitive use of the word loss. This quote captures the whole premise of Alzheimer’s Disease, while she is forgetting and losing things every day, she also learns and relearns how to cope with this. Externally it made her the shell of a woman she once was; however, she was still… Alice Howland.
I recommend both movies to anyone who is interested in the effects of living with Locked-in Syndrome or Alzheimer’s Disease. One of Locked-in Syndrome’s most devastating effects is the patient’s inability to speak. Bauby was very fortunate that he had a speech therapist who developed a way of communication involving blinking and the repetition of letters by their frequency of use. One could imagine how awful it would be to never again be able to control any of your normal bodily functions, such as speech. For most it might cause a depression which you can see when Bauby claims he wishes to die. (Schnabel, 2007, 33:46) With Alzheimer’s Disease as seen in Still Alice, one retains most of their physical functions until the near end of their lives, however, they begin a gradual loss of cognitive functions, until they lose almost all normal functions of life. Seeing Alice live with these issues shows just how hard it can be to deal with your brain deteriorating. Comparatively Alzheimer’s Disease and Locked-in Syndrome seem almost opposites. With Alzheimer’s for most of the disease the patient’s body functions normally but they are losing cognitive functions, while in Locked in Syndrome the patient retains cognition, but their body has no function, other than ocular movement.
Illustrating the effects of the diseases is great, however, understanding the science behind them is also important. We know from Bauby’s doctor that Locked-in syndrome disables the brainstem (Schnabel, 2007, 8:43). The movie failed to explain the cause of the disorder being a bilateral lesion in the Pons. Also not mentioned is the reason for motor skills in the eyes being spared is because the ocular motor pathways lie dorsal to the location of these lesions (Love & Biller). We also know that Alzheimer’s disease is caused by buildup of both beta-amyloid plaques and formations known as Tau Tangles. The movie mentioned there being an abnormally large amount of beta-amyloid found in the brain scans for Alice, but the presence of Tau Tangles was never mentioned. We know that these toxic beta-amyloid plaques are formed from enzymes breaking beta-amyloid precursor protein into a toxic 42 amino acid version rather than the normal 40 amino acid version (St. George-Hyslop, 2000, p. 78). Due to these reasons I think the movies did not explain the science of the diseases as well as the effects.
I do like both of these movies, because I am more interested in the lives of patients rather than the molecular aspect. I prefer Still Alice because I am fascinated with Alzheimer’s disease and also because it was very easy to become attached to Alice Howland. I actually cried at several points in this movie which is uncommon for me. One thing I did not like about the movie was that it did not focus on the later stages of the disease as much as the beginning. I did not like The Diving Bell and the Butterfly as much because I never was able to feel attached to Bauby, and also because I felt that it was very repetitive. I think that both of these movies are great depending on what one is looking for and demonstrate very well, how much we can gain from loss.
Kolb, B., Whishaw, I. Q., & Teskey G. C. (2016). An Introduction to Brain and Behavior. New York, NY: Macmillan International Higher Education.
Love, B. B., & Biller, J. (2007). Chapter 22 Neurovascular Systeem. In Textbook of Clinical Neurology (3rd ed., pp. 405–436). Philadelphia : Saunders. doi:10.1016/B978-141603618-0.10022-0. Retrieved, September 25, 2019, from, https://www.sciencedirect.com/topics/neuroscience/locked-in-syndrome
Richard, G., & Westmoreland, W. (Directors and writers). (2014). Still Alice [Sony Crackle]. Retrieved from https://www.sonycrackle.com
Schnnabel, J. (Director). (2007). The diving bell and the butterfly [Video File]. Retrieved from https://lakeforestcollege.hosted.panopto.com/Panopto/Pages/Viewer.aspx?id=19b0991d-2b7e-40b5-878e-aab601412ba6
St. George-Hyslop, P. H. (December 2000). Piecing together Alzheimer’s. Scientific American. Retrieved from www.sciam.com
Still Alice. (2015, January 16). Retrieved from https://www.imdb.com/title/tt3316960/
The diving bell and the butterfly. (2007, May 23). Retrieved from https://www.imdb.com/title/tt0401383/
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