Grieving a Life That is Not

Posted on December 9, 2018 by

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While completing the requirements for my terminal MA, I imagined the future prospects for a successful junior researcher. Years before, I left a decade-long career to return to school. As a graduate student, I earned money in the service industry, working late into early morning hours to contribute financially to our growing family. Daytime activities included reading, research, writing, and attending classes with three young children in tow. My champion of a spouse worked full-time to serve our family as the primary earner and to carry our medical benefits. With an expected graduation date in view, I secured an adjunct faculty position at a local two-year college. I presented papers at meetings of the local philosophical association, I continued to meet regularly with former faculty from my university, and I sharpened my knack for teaching, born from several years of experience working in instructional design, professional development, and training delivery–my job prior to pursuing my goal to become a professional philosopher. The plan was to teach while applying to PhD programs.

Then.

I received a devastating medical diagnosis–an aggressive brain cancer, glioblastoma, with a dismal prognosis.

Though I do not write this post to share more about this difficult time, sitting in a neurosurgeon’s office to schedule brain surgery, or enduring an awake surgical procedure, and later, shifting nervously in the office of my neuro-oncologist while it is explained that despite a successful surgery, aggressive radiation therapy and chemotherapy, my cancer will almost certainly recur. Instead, in this post I share the perspective of a seriously ill person, with life projects, goals, and aims: a personal axiology. Many of us wonder what it would be like to face a difficult medical diagnosis head-on. In this post I hope to say something useful about this question, and my reply draws from my formal training in philosophy.

My spouse works at the local safety net hospital, the same hospital where I receive the bulk of my medical care. Unable to drive because of seizures, I often accompany my spouse to work and spend the day on the hospital campus researching and writing. It was in this setting I came to understand the source of my grief. I was not grieving the loss of my life, as it is presently. Of course, I am saddened to think of missing our kids’ lifecycle milestones, and I worry for my spouse and our children that at some future time, they will face obstacles and must carry on in my absence, responding to those obstacles with resiliency, as I am confident they will, with the guidance of my spouse and broad network of support.

Doctors, nurses, rehabilitation services therapists bustled by as I sipped coffee. My eyes welled and tears collected in the corners. The doctorate slipping away from me while scrub-clad professionals came and went–I would not earn a PhD, MD, DO, EdD, or PhilD–those plans felt increasingly out of reach. “I am not grieving my present life, the life that is,” I typed in my personal blog, “I am grieving the life that is not.”

There are many ways to measure successful philosophical research. One measure evoked in this post is to pursue the explanation of an insight that many of us share, but no one has thought much to explain why.

I have since shared with colleagues my (albeit sad) lightbulb of insight: “grieving the life that is not.” I receive nods in affirmation. The life that is not is distinguished from the life that is because the former is just this: a life that at once could have been, but now, is not. It seems right to many that if given a life-limiting diagnosis, we will be sad about the loss of future possibilities. But agreement is not what I am after. Why is it I grieve for a life I have never experienced–is it possible to grieve for the loss of something one has never possessed?

This is grieving the loss of the life that is not, and though it receives nods in conversation, the explanation for this grief is something I work hard to construct. The project is yet unfinished.

Our projects give meaning to our lives, and framed within this personal axiology–those goals and aims I raised earlier–our actions balance immediacy and purpose, by which I mean to say we act in ways to satisfy near-term needs and, equipped with agency or a feeling of responsibility for our own outcomes, near-term actions are oriented toward our future goals. When faced unexpectedly with our mortality, axiology is upset, undermining meaning and purpose. Serious illness presents just such a sudden onset of axiological crisis: near-term actions must be rethought in light of present capability, and the long-term goals toward which our near-term actions are directed narrow. After receiving a serious illness diagnosis, I came to understand the object of my grief was not (only) the present loss of my daily life; rather, I grieved the loss of life projects.

A seriously ill person must reconcile the present self to a yet unknown future. A relationship between current and future selves is negotiated. In the gulf between what is presently the case and an uncertain future lays a crisis of meaning and with it, follows angst and anxiety. There is little meaning in a  life with no forward-looking aims. To recover meaning, the seriously ill person must make sense of the source of anxiety. I locate anxiety in the loss of future possible lives–the lives which are not. More pointedly, for the seriously ill, this amounts to living in the presence of a limiting horizon of future projects.

I grieve the loss of many possible lives that could be mine, or could have been but now fold under the faculty of imagination. There is a relationship holding between the beliefs  we form through direct experience and reflection on these matters of fact to fill in the content of future, possible lives. Axiology is restricted to a limit of present beliefs. There is an insurmountable epistemic gap between what is and what will be the case. This is a rather more technical way to say that beliefs about the future must have their origin in beliefs about the present. Present beliefs are the raw materials to generate future aims.

What could be, is conceived of only within the possibilities allowed by the present body. In a failing body the possibilities open to the person, facilitated by our bodies, become fewer. I was getting onto this point sitting in the hospital coffee shop: my diagnosis, its bearing on my day-to-day health, and more importantly its expected life-limiting prognosis was upsetting my personal axiology, my goal for doctoral program acceptance, for example.

Our personal axiology is intimately connected to a conceived-of future self: a possible life, and that possible life is conditioned on relevant facts about our current perceived self. A disruption to our current perceived self includes downstream impacts to our possible lives. Disability, serious medical diagnosis, disaster, and more impede the relationship between our perceived current self with our conceived possible lives. We grieve for this loss, the loss of touch with our possible lives. When reorienting our personal axiology in light of the disruption, we may go for periods of time with a tenuous relationship to a possible life or hold competing possible lives at once. In the absence of a determined possible life or holding at one time many competing possible lives, each vying for acceptance, efforts to re-orient the perceived current self toward its conditioned future is stalled. An odd relationship arises: a possible life is contingent on a perceived current self; there is no such possible life without a current perceived self, but a full realization of a life with meaning in the perceived present requires the determination of a possible life. In fewer words: Our perceived current self lacks meaning without the determination of a possible life. In this way, the perceived present is responsible for giving rise to a possible life, but until this possible life is determined, the perceived present lacks meaning because our near-term actions lack alignment with longer-term aims. A feedback loop emerges from this relationship between perceived present and conceived future.

With this rough sketch in hand, we may diagnosis what is at issue when serious illness disrupts our lives. What does grieving the life that is not, a possible life, amount to? Losing touch with possible lives disorients the perceived current self. This is the philosophical machinery I am employing to describe the felt experience of serious illness: a grieving for the loss of possible lives and an urgency to recover meaning through re-orientation of our axiology. Agency then emerges from the alignment of near-term actions with longer-term aims. Our perceived present and conceived future are in negotiation, and in this negotiation, I search for meaning in a life interrupted by illness.

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Though I do not appeal to direct quotations within this post, credit for motivating my thinking on this topic is due primarily to the following references:

Adler, Jonathan M. (2012). “Living into the story: Agency and Coherence in a Longitudinal Study of Narrative Identity Development and Mental Health Over the Course of Psychotherapy.” Journal of Personality and Social Psychology 102, no. 2.

Carel, Havi (2008). Illness. Routledge.

Caruso, Gregg & Flanagan, Owen (eds.) (2018). Neuroexistentialism: Meaning, Morals, and Purpose in the Age of Neuroscience. New York: Oxford University Press.

Pattakos, Alex (2017). “The Crisis of Meaning: Heeding Victor Frankl’s Call.” Psychology Today. https://www.psychologytoday.com/us/blog/the-meaningful-life/201707/the-crisis-meaning