(Note: the following post is based on a paper that I wrote for my Medical Humanities class in Fall 2016. I sincerely hope that you will find it thought provoking.)
At some point or another we all ask “why me?” Inevitably, circumstances emerge, often in the form of physical ailments, which do not seem fair. We, as humans, tend to consider ourselves undeserving of the terrible conditions, which we frequently face. As illness looms and robs us of our good health, we can have the tendency to feel cheated and bitter as we compare our current state of sickness with our former state of wellbeing. Implicit but often unstated in this line of thinking is the fact that when we think or talk about health in terms of it being something that we deserve, we are implying that it is our right. This leads us to the question “is good health actually a right or should it be considered a gift? Jean-Dominique Bauby in his book The Diving Bell and the Butterfly wrestles intensely with this question as he remembers his past and is initially resentful and distressed about losing his health. As his life continues, however, he gradually comes to accept his condition, appreciate his past, and feel grateful about his current abilities.
It is understandable that, upon waking from a coma and realizing that he can move none of his muscles but his left eyelid, Bauby would be at least a little bit distressed. And as he comes to a fuller realization of his condition and its far-reaching implications, this frustration and despair becomes even more apparent. During an interaction with his son, these emotions seem to overwhelm Bauby, as he wordlessly proclaims, “Grief surges over me. His face not two feet from mine, my son Théophile sits patiently waiting—and I, his father, have lost the simple right to ruffle his bristly hair, clasp his downy neck, hug his small, lithe, warm body tight against me” (Bauby 71). Embedded in this statement is the assumption that things are not as they should be. Fathers should be able to show affection to their sons and his sense of happiness is obliterated by the fact that he once was able to physically interact with his son and is now unable. Bauby does not ask for a lot and the realization that this small but significant pleasure has been taken from him plunges his spirit into a state of anguish. Another gratification that eludes him is the ability to bathe. The embarrassment of having to be bathed, as an adult, is exponentially surpassed by the bitterness that comes from knowing the joy that he used to experience bathing himself. Bauby describes his thinking, “The delectable moment when I sink into the tub is quickly followed by nostalgia for the protracted immersions that were the joy of my previous life. […] Rarely do I feel my condition so cruelly as when I am recalling such pleasures” (Bauby 17). To Bauby inability is difficult but remembering life without these impairments makes life even more arduous.
Bauby does not remain in this condition of despair for long. Although it is unclear whether this transition is linear or cyclical, it is apparent that gradually Bauby moves on. At one point he quite starkly but unresentfully states the permanence of his condition and the reality that there is no hope for change, “I have indeed begun a new life, and that life is here, in this bed, that wheelchair, and those corridors. Nowhere else” (Bauby 129). The general tone of this statement and the fact that he talks about a new life expresses a state of acceptance. He is no longer bitter but rather desires to make the best out of his current condition. He expounds upon these thoughts, “I am savoring this last week of August with a heart that is almost light, because for the first time in a long while I don’t have that awful sense of countdown—the feeling triggered at the beginning of a vacation that inevitably spoils the good part of it” (Bauby 130). The removal of the pressure to get better and the acceptance of his condition allows Bauby to actually enjoy the life that he has.
This acceptance gives Bauby a different lens through which to see his past and current experiences. He now considers all of his abilities to be gifts which he should be grateful for. Rather than feel bitter or cheated when considering his past, Bauby thinks about how he used to live and marvels “I mechanically carried out all those simple acts that today seem miraculous to me: shaving, dressing, downing a hot chocolate” (Bauby 120). This change of mindset also impacts the way Bauby considers his current situation. Bauby writes, “This is astonishing: my hearing does not improve, yet I hear them better and better. I must have butterfly hearing” (Bauby 97). This change in mindset allows Bauby to appreciate both the past and the present and to have a thankful, not bitter, frame of mind.
There are many lessons that can be gleaned from the way Bauby lived the final period of his life. He was forced to deal with the reality that illness does not discriminate based on virtue, and, regardless of the deservedness of sickness, we are responsible for how we react to the situations that we face. Bauby seems to realize that every second of life is a precious gift and as he overcomes the initial despair and resentment of his condition, he is able to enjoy the simple and few pleasures of his remaining time on earth.
For further reading, check out Bauby’s book.
I hope you enjoyed this post and I would love to hear your thoughts on it. Feel free to leave a comment or send me an email with your perspective on these issues. Thanks for reading!