“The accomplishment I am most proud of is my relationship with the end of my life”
In June, 2016, Adam Hayden, then a philosophy student in his lower 30s, and also a husband and a father of three young boys, was diagnosed with glioblastoma, an aggressive form of cancer that attacks the brain or spinal cord.
Later that year, he started a blog, Glioblastology, that has documented his experiences and thoughts about his illness, treatment, relationships, and death. He has also spoken publicly to various audiences, including medical professionals and bioethics students, about these subjects. He earned his MA in philosophy from Indiana University–Purdue University Indianapolis in 2017, and aims to be doing what he calls “philosophy in the wild“:
Writing this blog carries worries: worries about my many terminological and theoretical mistakes, worries about circulating misinformation—though, I do my best to perform due diligence and write with integrity, worries about sustaining the engagement of my audience, and worries that hours spent reading and writing, posting and sharing, turn out to be of little use to myself and others, now or in the future. Worries notwithstanding, the alignment of my actions with values encourages me to press on, speaking with the voice I trust, which is my own, informed by research, eager to offer new insights into old problems, helping others discover the joy of research as it informs a more intimate connection to our context, better relationships with our medical teams and caregivers, and feelings of empowerment that we may elect to participate in our care and treatment more actively, less passively.
I think this is what I mean by ‘Philosophy in the Wild’: the discipline is highly technical, specialists seemingly writing only for other specialists, and those unfamiliar with the jargon, unable to join the conversation. As with physical barriers, emotional barriers, legislative and systemic barriers, folks create barriers against our better judgment… institutional barriers erected that stand between philosophers, studying reason and inference, and a general audience who would benefit from learning more.
In his most recent post, “The Benefit of Death Talk,” Mr. Hayden writes, “The accomplishment I am most proud of is my relationship with the end of my life.” He elaborates on this:
The likely course of my disease progression includes loss of executive function: inability to feed myself, maximum assistance with toileting, inability to speak, impaired reading, writing, and significant language deficits; all of these functions stand to decline as my brain tumor spreads. A palliative care doctor described this to me as a loss of contact with the world. Whether you personally know me, reading only this post may provide all the information needed to realize what a terrible loss this is to my sense of identity. It is terrifying to consider my own loss of connection. Worse still for my wife–so many Amazon purchases she has rationalized on my behalf.
Whenever asked to speak, write, give an interview, offer my perspective, join a committee, call my congress person, or travel to an event, I try to say yes! Anytime the following interjection is welcome in conversation I state one of my goals: to bring death, the topic of death, out of the shadows of taboo, and introduce this topic into regular discourse. The American conversation, writ large, is missing an appreciation for death. Plenty of complaining about taxes, little conversation about death, yet these are purportedly the only certainties in life…
Though, I also face a nagging feeling that we are too ready to discuss death; that discussing our impending death is somehow a badge of honor that we resign ourselves to our fate. I notice champions of hospice and palliative care in our community applaud those who have been forthcoming with their end of life plans, and I think on this approach we are committing a grave error. The advance directive is the endpoint of a much longer conversation about values, priorities, considerations for our loved ones, and desires for our final minutes (hours, days, or weeks).
My relationship with the end of my life is the result of countless hours of tears, reflection, bear hugs, kisses, worries, and sleepless nights about my wife and our children.
My aim to bring death out of the shadows of taboo is not to ensure every American has an advance directive on file–though, that is not a bad result; rather, my espousal of end of life consideration is to promote the dialogue pertaining to death. The benefit of death becoming trendy is not realized in your producing a document. The document is novel. The document is the shiny toy. The document is the distraction. The benefit of death talk is that we reveal a more intimate and honest relationship with those who accompany us on our journey to our mortal end. It is the conversation that should be lifted up, not its designed outcomes.
The accomplishment I am most proud of is my relationship with the end of my life, because it is the accomplishment of my relationship with my wife, our children, and our open and honest dialogue. It is the accomplishment of hours of reflection, consideration, and hard-won acceptance.
You can read more of Adam Hayden’s writing here.
(via Arthur Ward)
the unexamined death is not worth dying?Report