Sponsored by Derek Nelson, PhD
As articulated in our last post, “The first-person experience of illness,” there is plenty of room for further humanization of a technologically dominated medical paradigm. This tradition’s scientific imperatives of “if you can’t measure it, it’s not real” are insufficient for the strange depths of serious illness. So the poet must stir the sedimented ways that leave us in the dark.
Through true seeing into the heart of suffering, the lived meaning of illness is given witness. Consider how in Man’s Search for Meaning, a Holocaust survivor and influential psychiatrist named Viktor Frankl shares the story of his manuscript being confiscated and destroyed under Nazi occupation. The loss of years’ worth of hard work could crush a man in this situation. Quite the opposite, he claimed that the rewriting of his manuscript prevented cardiovascular collapse by perpetuating what he called a “healthy tension of becoming.” (104) Similarly, he noted a correlation between the presence of hope in the hearts of his fellow prisoners and the performance of their immune systems. (75)
Surely, a human dimension beyond mechanistic biochemical functioning must be acknowledged when caring for an ill person. Human beings bear a primal inclination to make sense of life circumstances that are often inherently messy. However, many times the deepest meanings come from the heart of the maelstrom. Viktor Frankl offers that, “each man is questioned by life; and he can only answer to life by answering for his own life; to life he can only respond by being responsible…responsibleness [is] the very essence of human existence.” (Man’s Search for Meaning, 109) So this is not necessarily in the sense of paying one’s rent on time, but instead a reasonable response to circumstance—no matter how bleak.
Generally, our natural state of equilibrium signifies human health (Gadamer, The Enigma of Health, 36). When we become aware of and begin to reject the expectations that society imposes on ill people, it becomes easier to accept illness as an inherent aspect of life’s natural cycles. So we’re coming to terms with a seemingly paradoxical notion of healthy deterioration: “a flower that blossoms only for a single night does not seem to us on that account less lovely” (Freud, “on Transience” 288).
By highlighting features of the lived experience of illness that otherwise go unexplored, phenomenological medicine can “open a space for the creative adaptability that can help enable a good life even within a context of illness.”(Carel, “Can I Be Ill and Happy?” 109) This “creative adaptability” is a response to this strange “new” body we’ve acquired and its unfamiliar challenges. These adaptations can involve small details, but details are the fabric of our life story. Getting tiny wins on many seemingly small things may lead to “a modified but nonetheless rich texture of life even without a medical resolution.” (ibid., 108–9)
Chronic illness compels the individual to respond creatively to the challenges of the altered body. The ill person is faced with those changes, including the range of existential and social changes, and so must cope with them in order continue to progress in personal development and make meaning amidst a difficult circumstance. This adaptation can be a struggle, especially late in life once habits have been rooted more deeply. It takes work and does not happen overnight. But the development of new adaptive abilities along with the refinement of old ones is a creative achievement. This “success … leads to a sense of achievement … satisfaction [and] improvement in quality of life.” (ibid. 106)
Of course, these positive impacts of serious illness are not universal. The way this shows up depends on both the disease and the context. Whether or not someone is edified by illness depends on a person’s prior life history and moral fabric. Additionally, the social environment tremendously impacts the possibility and tone of this edification. Further, the nature of the infliction also impacts accordingly: “the edifying potential of an illness will depend upon its nature, intensity, duration, and the cognitive impairment it might entail.” (Kidd, “Can Illness Be Edifying?” 8)
While illness affords the opportunity for edification, it is not a necessary means to cultivating virtue. (Kidd, “Can Illness Be Edifying?” 12) To some extent, a person could even engage in the lessons to be learned from illness by reading illness narratives. Even so, edification is possible within the illness experience, but is not demanded. No one has the obligation of self-improvement because they are ill. As Arthur Kleinman puts it, ill people may be “privileged to discover powers within … us” allowing optimized ability to “contribute to [our own] care” (The Illness Narratives, xiii).
Despite the default influences articulated above and in our previous post, we are called to respond through truly witnessing the present moment and the instances of joy amidst illness, even if they are few and far between. This is all in an attempt to re-establish a sense of wonder in the face of the world. Here, self-centered consciousness gives way to world consciousness:
“What is it to...breathe in the world? First, it means aspiring and inspiring the literal presentation of things by gasping. The transfiguration of matter occurs through wonder...Here begins phenomenology: in a world of ensouled phenomena. Phenomena need not be saved by grace or faith or all-embracing theory...They are saved by...ahh of wonder...When there is nowhere to turn, turn back to the face before you, face the world. Here is the Goddess who gives a sense to the world that is neither myth nor meaning; instead that immediate thing as image, its smile, a joy, a joy that makes ‘forever’.” (Hillman, “Thought of the Heart,” 32-33)
When we shift our attention away from all that illness has taken from us, this allows space for the possibilities still present. For ill people, looking back might make us nostalgic for what we once were. Looking forward might be scary and uncertain. So ill people have these two reasons to embrace the flowing present. That's where the magic is.
Thank you to Janet Greenhut, M.D. for her diligent revisions of this post.