Philosophy

To handle distress: Do as much You as possible

“Today you are You, that is truer than true. There is no one alive who is Youer than You.” ― Dr. Seuss

I’ve read many great articles about homeschooling, setting up the optimal space for working from home, and activities to engage kids during long stretches indoors. Online fitness classes are easy to find. Bands are streaming sets online, and Netflix rolled out the very cool movie night watch party feature to connect with friends virtually. Many employers are scheduling recurring “coffee meetings” to bring their remote employees together. Universities have shifted in-person instruction to online lectures.

These are all incredible changes that happened within a matter of days! We should be encouraged by these moves to act in a unified way to protect the health of our communities. Still, we have plenty of work to do to reinforce adherence to CDC guidelines, and it would serve each of us well to heed the advice of epidemiologists and healthcare workers–like my wife–who are sharing their experiences from the frontlines.

This post is not to reiterate those cautionary tales, and I do not want to repeat the terrific resources that so many have made available.

Instead, I write this post to address one fundamental question: How do we feel normal, when so much around us is changing?

Over three months, beginning in May 2016, Whitney and I reacted to the news that I was diagnosed with the aggressive brain cancer, glioblastoma. With this diagnosis we were confronted with my mortality: the dismal five-year survival rate for GBM is less than 10%. Yet this existential threat to my survival, Whitney’s husband, the dad to our kids, was only the tip of the iceberg. Just beneath the rolling waves of serious illness was a greater threat: the complete disruption and reorientation of our lives.

In short order, I stepped away from my full-time career working in learning and organizational change management, Whitney stepped away from her full-time position at the hospital to care for me and our boys, and she shifted to a variable schedule, with enough hours to maintain benefits eligibility, requiring that she commit to working every weekend; we sold my car because my persistent seizures made driving a risk to myself and others, and we sold our condo both because the second-floor walk-up was incompatible with my limited mobility following surgery and the mortgage seemed impossible to maintain after losing my salary.

By Fall 2016 our lives were barely recognizable to what they had been only months before.

I share this because the disruption and the reorientation of daily life may feel a lot like what you’re facing now in response to social distancing and other mitigation or suppression efforts to slow the spread of the novel corona virus or covid-19.

I want to offer the advice that I give to newly diagnosed patients and their loved ones who reach out to me through this blog or through Twitter.

I am frequently asked this question by newly diagnosed folks who must reorient their lives in light of serious illness–usually for those reaching out to me, the diagnosis is brain cancer, but I think the advice generalizes.

Imagine that you walk into an office visit with an oncologist, and you walk out with the information that your life expectancy is now measured by reference to “median overall survival.”

This is not unlike the news all of us are reading today, in light of covid-19. Our communities, the number of presumptive cases, the exponential logarithms that predict “points of no return” to exceed hospital capacity, and the predicted mortality rates, both mortality for covid-19 but also mortality rates for other life-threatening events like heart attack that are increased because hospitals reach capacity and clinicians and beds are unavailable, this news is a difference in degree, not a difference in kind, from the one-on-one giving of diagnosis between a doctor and those within their care.

“Adam,” I am asked by folks facing cancer, “What now?”

In simple terms, this is my response: Get back to doing something that feels like “you,” just as quickly as you can!

In the hospital after brain surgery, and then in an inpatient rehabilitation hospital where I re-learned to walk, bathe, feed, and dress myself, very little of my life looked like the guy who dribbled a soccer ball outside with the kids or littered the countertop with books and journal articles to write papers for grad school.

I was on a locked brain trauma unit. I was using a wheelchair. My family could only visit on limited hours. Even the clothes that I was used to wearing didn’t fit because my body had swelled because of high-dose steroids to control brain swelling.

But I could read, and I could write, and I could continue working out the details of the philosophy of science literature I had studied in grad school.

Clearly this is a niche market! What feels like you may look nothing like this! But what’s important is that feeling like my life was totally disrupted, I could reclaim some of the activities that felt normal; that felt like me.

Adam journaling days after brain surgery, late-May 2016

So as you scroll past the alarmist articles, please for your health and the health of our communities, be informed and take action! But if you’re feeling overwhelmed and distressed; if you’re feeling like nothing is normal. If you stare at yourself in the mirror and wonder, “What now?”

Try doing as much you as possible, and you may find that when the world is disrupted and you must reorient your life, you can trust that your values, goals, and purpose will carry you through.

An Evening in Partnership with the End Well Foundation

Film Screening and Panel Discussion:

Sunday, November 3, 5:00pm, Thunderbird in historic Fountain Square, you are invited to a free public film screening of an Academy Award nominated film followed by a panel discussion that places researchers, doctors, and patients in dialogue with the public in an informal, come-as-you-are setting to talk about the end of life! Panelists represent perspectives on death and dying, from Medicine, Medical Humanities, Philosophy, Religious Studies, and Theology. We want to talk about how we may end well to learn more about how we may live well!

Register here! Check out the Facebook event page here! And read on for more details, including a summary of our incredible panel!

Writing for The Atlantic, Erika Hayasaki (2013) declares in her article of the same title that death is having a moment. Death positive movements, including Death Salon, Death Cafes, and the End Well Project usher conversations about death and dying out of the shadow of taboo and facilitate dialogue to urge event attendees and participants to think critically about humanizing the end of life experience. You are encouraged to think about the end of life to inform how you live fully each day, and ultimately, how you might end well, in alignment with your values and goals.

The event is hosted by Adam Hayden, a young dad, husband, philosopher, and a seriously ill patient, facing a life-limiting brain cancer diagnosis. Adam is a 2019 End Well Symposium speaker, an annual event, with the goal to create a cultural shift to normalize conversations about mortality throughout our life.

The event features Academy Award nominated documentary End Game. This film follows hospice and palliative medicine clinicians as they facilitate end of life experiences with patients and families. End Game weaves together three stories of visionary medical providers who practice on the cutting edge of life and death, helping to change the way we think about both.

The Fountain Square restaurant and bar, Thunderbird generously agreed to host the event to de-institutionalize these themes and create a come-as-you space for public engagement.

The event will be held on Sunday, November 3, 2019, from 5:00pm – 8:00pm. The event is free and open to the public, but attendees must be 21+. Thunderbird is offering their menu available for purchase. Thunderbird is located at 1127 Shelby St, Indianapolis, IN 46203.

The event kicks off with a “virtual” event welcome from the film’s executive producer, Shoshana Ungerleider, the 40 minute film will be screened, and Adam will moderate a panel discussion with audience questions. Everyone is encouraged to hang around after the panel to mingle.

An amazing interprofessional group of panelists include:

Emily Beckman, PhD, Assistant Professor of Medical Humanities and Health Studies (MHHS) at the IUPUI School of Liberal Arts and Adjunct Professor, Department of Medicine, at Indiana University School of Medicine
Andrea Jain, PhD Associate Professor, Department of Religious Studies at IUPUI School of Liberal Arts and editor of the Journal of the American Academy of Religion (JAAR)
Lyle Fettig, MD is Assistant Professor of Clinical Medicine at Indiana University School of Medicine, and he is Director of the Hospice and Palliative Medicine Fellowship program at Indiana University School of Medicine
Adam Hayden, MA is a co-investigator for The Brain Cancer Quality of Life Collaborative, an American Association for Cancer Research scientist-survivor program participant, and a Stanford University Medicine X ePatient scholar
Anastasia Holman, MDiv, MBA, ACPE Cert Educator, is Manager of Spiritual Education for IU Health System at Indiana University Health
Shelley Johns, PsyD, HSPP, ABPP is Adjunct Assistant Professor of Psychiatry, Indiana University School of Medicine, Research Scientist at the Indiana University Center for Health Services and Outcomes Research, Regenstrief Institute, and a Board Certified Clinical Health Psychologist at the Eskenazi Health Palliative Care Program

Please join us over a drink for this incredible film and critical discussion to follow.

Living with Cancer: Insidious and Destabilizing

“Don’t think, daddy! You can’t think right! You have a brain boo boo. Just ask me next time.”

Isaac, our confident, insightful seven year old, the oldest of our three boys, said these words to me this morning, when I shoved his lunch box into his backpack while rushing out the door to catch his school bus. The prompt for his cutting remarks was my explanation of the contents I packed for his daily lunch. “I thought you liked that stuff!” I muttered dishearteningly, with a mixture of confusion and exasperation.

Isaac, seven years old, before school, January 2019

My crime: thinking, or rather, as we may say as adults, assuming, and on that charge, I am surely guilty. I assumed a handful of snacks, protein, a juice box, and a square of chocolate would be a fine lunch for our oldest guy who is limited in his food options, after Whitney and I discovered, with the help a functional medicine practitioner and blood, urine, and saliva testing, that Isaac suffers from several food allergies.

I’ve raised before the issue of talking to kids about cancer, but what we face, the daily grind of parenting three young boys, my spouse who must work outside the home to serve as our primary earner and carry our medical benefits, and the primary at-home guardian, me, suffering from brain cancer and the host of accompanying neurological disorders–namely, headaches, seizures, and motor impairment–is a combination of factors that affects our kids in untold ways. It affects me, too, in a deeply fracturing sense. A fracturing of my will from my ability; my plans for the future and my practical responsibilities.

Surely we all squabble with our kids, and for this reason, motivated by a desire to connect, or to comfort by striking chords of relatability, or for fear of peering too closely at a situation that is all too frighteningly real, friends say to me, “yeah we get lip from our kids, too,” or “we also have a picky eater.” But the burgeoning independence and personality of an oldest child, or picky eating habits or allergies, and even the stressors of an at-home guardian fail to address the insidiousness of serious illness.

“You can’t think right! You have a brain boo boo.”

The 17th c. philosopher Thomas Hobbes, in his important work, The Leviathan, envisions conditions for people absent of government oversight: a “state of nature,” he called it. Important to note is that Hobbes is writing in a time when Europe is ravaged by a bloody civil war and political crisis. At any rate, Hobbes considers life to be “solitary, poor, nasty, brutish, and short,” in this state: “a war of all, against all.” Hobbes did not consider this a historically accurate description of pre-political humanity; rather a thought experiment to motivate his political theory.

During my first semester as a philosophy undergraduate we read excerpts from Leviathan. My professor pointed out the “insidiousness” of the imagined “natural state.” The point, my professor emphasized, is not that everyone is locked in combat. Instead, the threat of instability looms large, and this unsettling psychological state is a hinderance on people’s desire to live well.

Living with cancer is insidious and destabilizing. A psychologically unsettling state. After active treatment has ended, at least for brain malignancies like glioblastoma, patients enter a period of disease monitoring: MRI (brain) “scans” every eight to twelve weeks. The return (recurrence; regrowth) of glioblastoma is near certain, regardless of surgical success or response to chemotherapy. After recurrence the disease is near universally fatal, and the five-year survival rate is a dismal 5.5%.

My working life, that is, “work” in all forms, including: my paid part-time work, and also writing (blog posts like this that you are now reading), speaking, interviewing, advocating, and so on, is taking its toll on me both physically and emotionally. My days end in fatigue, and continuing to tell my story, though with innumerable positive implications for myself and others, is also like retuning to the scene of the crime. I am surely threatened by this destabilizing psychological state. Do I continue to work? Do I retire to a life focused on family and permit myself to let go of self-governed responsibilities, or, like Hobbes, are these self-governing practices the only things separating me from a natural state?

Following my son’s ill-delivered but insightful advice: it would be better not for me to assume, but to ask all of those closest to me and to myself, how might I best seek a life well-lived?

What We Gain Through Shared Language

And he’s on the table and gone to code/ And I do not think that anyone knows/ What they’re doing here” -“Jumper,” Third Eye Blind

My mom delivered me in a hospital with no staff anesthesiologist, and her care was provided by a general practitioner, not an OB. The story goes that when the doctor asked what my name would be, “Adam,” the doctor repeated a “poem” he knew called,”Fleas”: “Adam had ’em.” That was Putnam County Hospital.

I was raised in Arizona for many important developmental years, from four years old until 12. A pastor’s kid (“PK”). After some time in Phoenix, our family moved to a small rental home in an affluent Scottsdale community, near the new church build my dad was leading, with tremendous support from mom. I was never much struck by this disparity between our 1,500 square feet and our neighbors’ 3,000. The road to hell may be paved with good intentions, but the road to wealth is not by ordination.

My childhood best friend owned lazer tag vests, guns, and even the LT base. He had a Commodore 64 and Nintendo. So long as I managed to be a good friend and an entertaining guest, there wasn’t much need for me to have those things, too. (There’s something of neoliberalism to speak to here, but I’m not a political scientist.)

We moved back home to Indiana in the middle of my sixth grade year. That was a tough move.

In 1996, I started high school. I was too young to catch Nirvana’s Nevermind a few years earlier. Girls were using pencil erasers to create negative space on the covers of their Mead notebooks in the form of the flying W, representing Weezer, and Green Day would be my bus companion on the way home–where my route would take me by Whitney’s house (my now wife), but we were only passing acquaintances then. Besides, she had an older brother with a car.

I was bullied on that bus. I started skateboarding home. Skating traded in emotional bruises for physical.

By 1996 my Green Day interest fueled a deeper dive into whatever punk rock was accessible in the Midwest: Rancid, Anti-Flag, NOFX, and the skate punk, Lagwagon, Pennywise, the Descendants, and Screeching Weasel.

In 1998, many of us fell for Third Eye Blind. “Jumper” was one of those radio singles that, along with tracks from Foo Fighters, seemed to transcend high school niche communities.

This morning I washed breakfast dishes, and without prompting, I started singing, “I wish you would step back from that ledge, my friend.” Isaac, perceptive, always listening, was strolling around humming and piecing those words together. I called him over, and we listened to a few 3eb tracks. Throughout life we wrap ourselves in lies to our own detriment (“Cut ties, with all the lies, that we’ve been living in.”) This is poignantly so in high school, and so the lyrics of that song unified an adolescent spirit.

***

I am active in medical eduction (#MedEd), on the periphery, anyway. I promote medical humanities, narrative medicine, or empathetic witnessing–there isn’t enough scholarship available yet to draw clear boundaries around sub-specialties, and this is probably good.

Being a patient advocate is an uphill road. There are receptive institutions, and receptivity increases more each lecture and conference, but fighting imposter syndrome is a struggle–what right do I have to teach these doctors? A senior resident has nearly a decade combined of undergraduate pre-med and med school training, not to mention 24 hour rotations through major departments, running codes, delivering babies, identifying pill-seeking behaviors, establishing relationships with patients while maintaining objective distance, and coming up with poems about newborns.

I have had glioblastoma for 22months. What right do I have to give a Grand Rounds? (Note: I haven’t given a Grand Rounds, so someone invite me!) I reflected with a friend recently on my strategy to engage a clinical audience. I talked about how hard I work to cultivate a medical vocabulary: to translate my experience into the physician’s vernacular. When discussing my diagnosis, I emphasize “histologic vs molecular pathology and classification of tumors.” I do not adjust my medications, I “engage in monitoring and medication self-titration.” I only rarely talk about “scans,” instead, “diagnostic imaging.”

The idea is this: to gain credibility in the healthcare space, I demonstrate my aptitude with jargon to earn my seat at your table. This is not only the patient’s burden, medical hierarchy itself is a power structure, where those with training, experience, and knowledge sit atop those with lesser of these.

The error I commit when accepting the encumbrance of fitting my language to yours is that we are somehow peers, and I must demonstrate thus to be respected, and only those who earn respect are listened to. That may be a problem of the dominator hierarchy rife in medicine, but, and I’m now coming to realize, this isn’t my problem to solve. Indeed, it is not a problem by which I am directly impacted, medical miscommunication and poor handling of complex cases, notwithstanding.

Stakeholders in a diverse project with shared aims need not be peers to be colleagues.

I do not speak the language of medicine. I speak the language of humanities. When the doctor in training was dissecting cadavers, I was reconstructing medieval arguments for god’s existence. Starkly contrasting research, one would think, but when viewed like this, mapping the body (med students) and understanding what our greatest thinkers have claimed about the purported deity that ostensibly designed it thus (philosophy students), the lines are blurred.

I aim to be competent in the language of medicine, but no longer to earn the respect of my practitioner audience, but to best understand the disease that plagues my body. The practitioner audience may learn my language, too, not to publish papers in professional philosophy, but to best understand the life-world of people under their care.

Doctors, we are not peers, but that does not entail we are not colleagues. We, each of us, seek to improve the lives of others, and in that pursuit, we have many shared aims. That is what we gain through shared language. Let’s move forward together, as colleagues. It takes expertise on both ends of the stethoscope to chart our future path.

After all, “Everyone has got a reason to put the past away.”

Paying It Forward at Thanksgiving

Jack Hope and I share many interests, not least of which is a mutual love of well-crafted cocktails, which sets up the story, how Jack and I became friends. I tended the bar at Libertine, learning from and working beside some of our industry’s best. Jack was a loyal, kind-hearted, thoughtful patron. If you know Jack, those words go down as smooth as our drinks. Jack is each of those things and more: kind-hearted, thoughtful, insightful, and compassionate. Talking across the bar one night, Jack and I learned that he and I are both graduates of the philosophy program at IU School of Liberal Arts at IUPUI.

My wife, Whitney, and I received my diagnosis of glioblastoma in June 2016. I coped with my devastating disease by turning to my first love, philosophy. I launched this blog, and I reached out to my academic contacts to express interest in sharing my story: the story of a young-30s, philosopher, bartender, dad to three, who is employing his formal training in academics to frame his aggressive brain cancer with some amount of sense–a task that at times continues to be Sisyphean.

I delivered my first public speaking event in March 2017. Jack attended, and by his own report, felt moved to action. He and I spoke. Keeping with Jack’s generous and kind nature, he wondered how his success in the small business space with Hope Plumbing might translate to meaningful support of me and my family. Whitney and I are the beneficiaries of a loving and supportive community. Our immediate needs for food, medical bills, and daily living were being helped along by our support network, and Jack realized he might be well positioned to exercise greater influence. This set in motion the first steps that would become the Adam Hayden Philosophy Scholarship at the IU School of Liberal Arts at IUPUI. Jack is the founder of this award, but he is always quick to recognize the generosity of his employees who gave 20% of the funds needed to endow the scholarship, his suppliers who generously gave, and leaders in the service industry who know me personally, or by reputation, as, all things considered, a pretty decent human being. Special thanks to Neal Brown of Stella, Libertine, Pizzology, Ukiyo, Moon Rabbit Ramen, Ed Sahm of Sahm’s Tavern, Big Lug, and more and William Kennedy of Crossroad Vintners.

Monday, November 13, just in time for Thanksgiving, Jack, philosophy faculty members from IU, the Dean of IU School of Liberal Arts at IUPUI, the Major Gifts Officer of the school, my parents, Whitney, and I presented Halle Leganza, philosophy student at IUPUI, with the inaugural award of the Adam Hayden Philosophy Scholarship.

I spoke with Halle to hear some about her philosophical interests, and in the common thread that connects all people featuring in this story, Halle uses philosophy and this scholarship she has earned to pay it forward in the world.

“I realized how much [philosophy] helps me in becoming more proficient at understanding meaning behind what we say and write,” Halle told me. Meaning is central to Halle’s professional interests. She seeks to be an American Sign Language (ASL) interpreter. Halle continued, “Philosophy specifically has taught me how one sentence can hold a variety of propositions and meanings, something we all as interpreting students struggle to pick out of utterances or signs.”

Halle’s insight is welcome. Consider how often we employ sarcasm, speaking the same words, but conveying a meaning that diverges from the words that are uttered. (Philosopher Paul Grice labels this phenomena ‘implicature.’) Halle credits philosophy with identifying, “the purpose of the sentence overall. What exactly is trying to be communicated here?” (her emphasis)

This year at Thanksgiving my family, despite this life changing and devastating diagnosis, has much to be thankful for.

I am thankful for so many in our community who gave selflessly to endow the Adam Hayden Philosophy Scholarship. You gave without knowing exactly who would benefit, and how exactly that beneficiary would leverage your generous donations. But look at the incredible work you have already contributed to! Halle will have a little less stress this year at school, and she has the benefit of a little more focus on her studies. Imagine ten or twenty years into the future when Halle is facilitating communication with persons who are deaf. You now have stake in her success.

Thank you, Jack. Thank you donors. Thank you IU School of Liberal Arts at IUPUI. Thank you Halle. Together we paying forward the generosity of others. Together we are making a positive difference in the world.

Cheers- AH

Pictures follow, also click to see a short video featuring Jack and I discussing the scholarship.

Recipient Halle Leganza and Dean of IU Liberal Arts at IUPUI, Dr. Tom Davis

Jack Hope, Whitney and Adam Hayden, Adam’s Parents, Marc and Julie Hayden, Halle Leganza, Dean, Dr. Tom Davis, Major Gifts Officer, Liz Goodfellow, and Philosophy Faculty, Dr. Chad Carmichael and Dr. Timothy Lyons

Adam and Jack Hope, with Adam’s Good Friend and Mentor, Chef Neal Brown, Hosting a Fundraiser at Stella

Founding Donor, Jack Hope with Adam

Science and Philosophy: Friend or Foe? A Guest Post at A Philosopher’s Take

Increasingly the lines are blurred between a strict empirical pursuit of experimental observation that is practiced in the laboratory, “on the bench,” as researchers say, and philosophical investigation of the world, “from the armchair,” which is an image of philosophy that draws criticism from some and raises the ire of many philosophers who see their work as more substantive than a priori reflection on topics detached from the natural world of experience.

Both portraits–the empirically-driven scientist and the armchair philosopher, are caricatures. Scientists adopt philosophical presuppositions that inform their experimental design to derive empirical data. Famously, Einstein’s moment of illumination on the path toward articulating his theory of special relativity was conceived by ‘thought experiment.’

There is a worry held by many contemporary philosophers that ‘scientism’ is on the rise, to the detriment of philosophy. Scientism is defined as unqualified deference to the empirical sciences as the only method by which a serious investigator pursues truth.

My attitude toward inquiry finds a seat at the table for both careful thought and careful experimentation. These are not mutually exclusive methods. I resist the idea that ‘scientism’ threatens philosophy, yet I also affirm that our philosophical positions should not wander so far from science that our philosophical theories become incompatible with evidence derived from the bench.

I recently wrote my first (of hopefully many) posts for the public philosophy blog, A Philosopher’s Take. There I explore this issue of philosophy and the threat of scientism, and I ultimately argue that scientism is a non-threat to contemporary analytic philosophy. If you’ve found these brief paragraphs interesting, I hope you’ll click over to read my recent post.

Making Sense of the Senseless

A classic sketch featuring Dana Carvey as Tom Brokaw aired on Saturday Night Live in 1996. The comedic premise has Brokaw (Carvey) pre-taping former President Gerald Ford obituaries to “cover all contingencies,” while Brokaw prepares to spend the winter in Barbados, presumably then unavailable to cover breaking news. Brokaw is reporting the fictional/possible “Gerald Ford shot dead” story, when his producer prompts Brokaw to include the word “senseless” (marker 1:10 in the linked video). Brokaw reports, “Gerald Ford shot dead today at the senseless age of 83”; the crowd erupts in laughter.

Of course it’s not the age of former President Ford that is senseless, but his assassination. This post is not on the mechanics of humor, but there is something instructive about this joke, grounded in what we mean by “senseless.” President Ford’s age is easily accounted for, and not something arbitrarily assigned to the President. Indeed, we could verify the President’s age by examining evidence such as the year recorded on his birth certificate. What we could not account for are the motives, thoughts, and attitudes of the imagined assassin. Hence, it is appropriate to say, “shot dead, senselessly,” rather than, “senseless age of 83.” Brokaw’s inappropriate insertion of “senseless” upon the producer’s request plays as a joke about language and about the “thoughtless anchor” trope, who only reads the prompter but, in some sense, does not know what they are saying. (For another salient example, see Will Ferrell’s Ron Burgundy in Anchorman, “Go fuck yourself, San Diego,”)

Senselessness in the context of Carvey’s Brokaw cashes out as some feature of an event or thing that we cannot account for. It is inexplicable. It confounds us. It is senseless. Someone’s reported age is not senseless. The unlikely assassination of a former President is senseless. Let this be a stand-in definition for ‘senseless’: something for which an account cannot be given. Hopefully I have provided adequate motivation to pick up this concept and apply it. Regardless, nothing all that important turns on the definition we settle on for ‘senseless.’

My loved ones identify senselessness in my glioblastoma diagnosis. There is no known cause for glioblastoma. There is no known cure for glioblastoma. This characterizes the disease as a double whammy: no prevention and no cure; utterly senseless. Adam was diagnosed with glioblastoma at the senseless age of 34.

Fortunately, we are not doomed to senselessness. We can see our way out of it by appeal to a recurring theme on my blog: narrative medicine.

Read the following description of one responsibility of clinical practice from Arthur Kleinman, quoted in Dr. DasGupta and Dr. Charon’s article on personal illness narratives[1]: “Rather than technical adherence to any strict format of history taking, empathetic witnessing involves ‘the existential commitment to be with the sick person and to facilitate his or her building of an illness narrative that will make sense of and give value to the experience'” [emphasis added].

Kleinman’s claim, endorsed by Drs. DasGupta and Charon, prescribes that clinicians are assigned the task of helping persons under their care to construct their narratives, that is, to tell their stories, and in so doing, to find sense in the circumstances and by some measure render the experience valuable.

I floated an analysis of ‘senseless’ to be an event or thing that cannot be accounted for. If you get on board with that definition, then making sense, as Kleinman orders, of the senseless, involves giving an account for one’s circumstances. Easily done, maybe, when you pick out your own agency in a circumstance, but with so many cancers generally, and glioblastoma, particularly, there is no accounting for the disease and no role for personal agency. Personal agency features heavily in our acceptance and moving forward with the diagnosis, but causally, pre-diagnosis, there was nothing I could have done to prevent my brain cancer; this is what I mean by no role for agency. The circumstance seemingly remains senseless. Is there another interpretation on offer? I suggest an alternative.

Rather than seek meaning in the senseless, a Sisyphean task, as I have said, there is no accounting for glioblastoma, what if I were to recast the circumstances in a new way, not as Adam with brain cancer that has no cause and is thereby senseless, but let us examine the outcome, when I interpret the circumstances as Adam, the graduate-trained philosopher, nearly ten years of experience training, consulting, and facilitating organizational change management in professional settings, with a supportive family, a strong social network, and relatively unimpaired cognitive functioning relative to this stage of his disease, save for his neuro-fatigue, seizures, headaches, frequent breaks, etc. On this revised reading of my circumstances, I have done nothing to change the constants that are included in the story–I still have brain cancer; there still is no cure, but I recast the circumstances in such a way to mitigate the threat of those things for which we cannot account.

There is no accounting for glioblastoma, or my having the disease, that is all senseless, confounding, inexplicable, but there is a way to tell my story, to construct my narrative, that makes sense of things, or at least better sense of them than I possessed pre-reflectively. I repeat for emphasis: I recast the circumstances in a way that made sense, in such a manner to mitigate the threat of those constants that are senseless. We may infer from Kleinman’s direction that making sense aids the storyteller in finding value in the experience. What I have done here in a few short paragraphs that reflect my many months wrestling with my disease, is to set aside those things for which I cannot make sense. I allow the disease, and my having it, to be senseless, but as Kleinman orders, I can make sense of and find value in the experience. More accurately: I distinguished the particulars that make up the experience from the experience itself. Some facets of my experience, the cause of glioblastoma, for example, are senseless, but my illness experience is much, much greater than the diagnosis.

I penned an open letter to Senator John McCain last week, on the heels of his glioblastoma diagnosis. I received countless article comments, tweets, and emails. One email related the story of a person whose dad died from glioblastoma when this person was still a child, only 12 years old, too young to understand the complexities and difficulties of daily living with brain cancer. This person, then child, emailed to tell me that my letter of advice and support to the Senator helped this person to better understand what life was like for that person’s father. By constructing my narrative in new lights, lights seeking to shine brightly on the experience that can be made sense of, allowing the senseless particulars to remain as part of the experience, but their threat mitigated, I found value in my experience by sharing my story with others.

We find sage advice at the intersection of comedy and medicine. Unsurprisingly. These both are unique expressions of humanity. Comedy and medicine are experiences far greater than the particulars that make them up.

Clinicians and professionals aid a person in crafting their narrative with the purpose of distinguishing those things for which we cannot account from the experience itself, when performed successfully, sense can be made of the senseless, and value can be found in the experience, even an illness experience, but just like comedy, we get better with practice.

[1] DasGupta, Sayantani, and Rita Charon. “Personal illness narratives: using reflective writing to teach empathy.” Academic Medicine 79, no. 4 (2004): 351-356.

Glioblastology

Writer, speaker, philosopher, living with brain cancer