1. How do stroke survivors or anyone with chronic illness, and health providers remain hopeful and “realistic”? What values are involved in their hope?People with chronic illnesses remain “realistic” due to their inner strengths and the absence of choice. According to studies conducted by Hartigan et al., stroke survivors first experience fear, but then replace it with the desire to regain control in life, and their main goal is to become independent (Hartigan et al., 2011, p. 26). Indeed, to have a goal means to be able to remain hopeful and to have desire to reach it. Such desires often encourage recoveries, and health providers aim to support them contributing to their implementation.
The main value that is involved in such hopes is independence and the desire to act and to improve at all times.
2. What are the sources of hope for this patient? Is there such a thing as bearing responsibility for being hopeful? If so, whose responsibility is it?The sources of Bauby’s hope include his memories, knowledge, and imagination. He is able to survive his disease only due to his ability to remember the real life and to live this life every day in his imagination: to visit his favorite places in France, to travel, and to meet different people. One more source of hope includes the correspondence that connects him with the people he loves. These are letters from friends, drawings from his children, postcards, etc.
Bearing responsibility for being hopeful is the responsibility of both Bauby and his favorite people. While Bauby’s mind is trapped inside his body and there is no chance for him either to recover or to die, he has no other choice as being hopeful. “Does the cosmos contain keys for opening up my diving bell? A subway line with no terminus? A currency strong enough to buy my freedom back? We must keep looking” (Bauby, 1996, p. 47). Bauby can find the strength for hope only by himself and within himself, but the people around can help him. They can give this help through visits, letters, postcards, prayers, etc. For instance, one can read about it in the chapter “Prayer,” where Bauby writes about his friends praying for him in different places across the world and the prayers of his daughter Celeste that “shield [him] from all harm” (Bauby, 1996, p. 11).
3. How we label a health condition is important for how those who have the condition understand themselves. Labels can empower and confine. Is “locked-in syndrome” a good descriptor of the experience of the author?The “locked-in-syndrome” of the author shows how label confined his mind and empowered it at the same time. The author was labeled as the “dead” man and “the vegetable,” but doctors and medical assistants gave him hope to recover. Furthermore, the author knew that the “locked-in-syndrome” is the very rare disease and started to imagine himself as a butterfly trapped in the diving bell with the hope to escape one day. His mind was empowered by imagination but confined by the body. The author imagined that every time the butterfly started to fight and flutter stronger the freedom became closer.
4. Changes after a devastating illness can alter one’s identity. How does the author see himself after the stroke? How do others see him?Bauby writes that he feels like “a diving bell holds [his] whole body prisoner” but “[his] mind takes flight like a butterfly” (Bauby, 1996, p. 9). In other words, he sees himself as a free mind trapped in the cage of the body; a butterfly locked the diving bell without a key. The other people see him as a diseased doomed for the life of the vegetable and further death. Bauby writes about it in the chapter “The Vegetable.” “Did you know that Bauby is now a total vegetable? . .Yes, I heard. A complete vegetable” (Bauby, 1996, p. 32). The doctors and hospital attendant look at him with different emotions from sympathy to indifference taking him as one among many. The other patients in the hospital, for instance, youth, perceive him indifferently, while the patients in the rehabilitation room prefer even not to look at him. At the same time, his visitors accept the new state of Bauby partially with fear, as it is the life you would not wish on your worst enemy.
5. The story isn’t about feeling better about terrible things, but about cherishing imagination as the force that sustains life. What is so important about imagination for understanding who we are as persons?Einstein said, “Imagination is more important than knowledge. For knowledge is limited to all we now know and understand, while imagination embraces the entire world, and all there ever will be to know and understand” (Einstein, n. d.). Imagination is based on the knowledge we have but goes beyond its limits and provides an opportunity to examine the situation from another angle. Furthermore, imagination closely relates to memories and allows exploring the world of past and future inside us. In our daily life, imagination and daydreaming give as a partial escape from routine and stress relief. Imagination creates our worlds and the whole world, as it helps us to imagine how we would act in one or another situation and to understand our life destination. Moreover, it helps us to overcome difficulties, like it happened with Bauby who was mentally able to survive his disease only due to the power of imagination. The developed and strong imagination determines our inner strength and abilities for adaptation or leading the lives we want to lead.
6. There is a need for those with a devastating illness to want to tell their story. What are ways to make sure that patients can tell their story and matter in ways that make a difference in how patients are treated?
Khullar writes, “Doctors are trained first to diagnose, treat and fix — and second, to comfort, palliate and soothe. The result is a slow loss of vision, an inability to see who and what people are outside the patient we see in the hospital” (Khullar, 2016). He also highlights that the U.S. Medicare recently started to pay doctors for talks with patients about their planning of the end of life but the important thing is to know not only about their future but also about their past. Unfortunately, the ability to listen is not a necessary feature of the modern doctors, especially if it is done for free, and now it is more a question of their personalities. The story of Bauby stated the same, as he wrote that only two people except his relatives and friends used the special alphabet to talk with him. One can make sure that people can tell their stories due to the establishment of this feature as the necessary one for doctors or additional payments doctor would receive for such talks. The stories of the patients could make the work of the medical assistance more effective and eliminate the practice when all patients are treated the same way.
References
Bauby, J.-D. (1996). The Diving Bell and the Butterfly. Retrieved from http://ihavebook.org/books/download/pdf/7628/the-diving-bell-and-the-butterfly.pdf
Einstein, A. (n. d.). Albert Einstein quotes. Goodreads. Retrieved from https://www.goodreads.com/quotes/556030-imagination-is-more-important-than-knowledge-for-knowledge-is-limited
Hartigan, I., O’Connell, E., McCarthy, G., and O’Mahony, D. (2011). First time stroke survivors' perceptions of their health status and their goals for recovery. International Journal of Nursing and Midwifery, 3 (1), 22-29. Retrieved from http://www.academicjournals.org/article/article1379410380_Hartigan%20et%20al.pdf
Khullar, D. (2016). Letting patients tell their stories. The New York Times. Retrieved from http://well.blogs.nytimes.com/2016/04/11/letting-patients-tell-their-stories/?_r=0
