A Conversation with Neuroscientist and Author, Barbara Lipska, PhD

[Note: An edited version of this post first appeared on blog.braintumor.org]

Introduction

Barbara Lipska, PhD, director of the Human Brain Collection Core at the National Institute of Mental Health (NIMH), and author of the recently published memoir, The Neuroscientist Who Lost Her Mind: My Tale of Madness and Recovery, notes her fantastic medical team, devoted family, and stubborn optimism as important tools for treatment and recovery from metastatic melanoma, but as she says, with metastatic cancer, the journey is “never really over.”

Dr. Lipska’s book is available April 3, 2018.

Adam Hayden snaps a selfie with the press kit for Dr. Lipska’s memoir, The Neuroscientist Who Lost Her Mind: My Tale of Madness and Recovery

Dr. Lipska telephoned me from her home near the National Institutes of Health (NIH) Bethesda campus, where Lipska spent much of her career.

Thick with her charming, Eastern European accent, Lipska remarked that she was only two years older than I am now when she immigrated to America from Poland. Having spent time recently reviewing Lipska’s book, connecting with her by phone felt more like catching up with a distant relative than interviewing the high profile scientist whose early career work established a novel theoretical model for the etiology and study of mental illness, namely schizophrenia. Her willingness to engage me, a new acquaintance, with humor, attention, and presence makes it no surprise that Lipska feels an obligation to help others, and she desires that her writing brings hope to readers. In this post, I summarize themes from our conversation, which emerge from her recent book. As someone living with glioblastoma (GBM), I took interest in Lipska’s experience with an immunotherapy trial to treat her metastatic brain cancer and her vivid descriptions of losing and recovering her sense of self through the ordeal.

Lipska’s neuroscientific training buttresses her claims of personal identity: “we are our brains,” she writes in her book, but it’s noteworthy that Lipska does not leave all matters of who she is up to biological explanation. She writes later in the memoir, “I insisted on being myself despite cancer and radiation.” The joy of reading a book like Lipska’s is the interplay between empiricism and physiology and more abstract notions of self, identity, hope, will, and optimism.

A bumpy road

I could not help but laugh during the early few minutes of our conversation when Lipska described her journey with metastatic melanoma–a journey that temporarily robbed her of her mind and nearly killed her, as a “bumpy road.” Lipska displays a robust optimism indicative of her strong-willed and competitive personality. She mentioned her desire to bring hope to readers. Drawing from my experience with scientists and researchers, a population that is often guarded about hope and optimism, in favor of evidence and conditional probabilities, I sensed there may be more, beneath the surface. I asked Dr. Lipska more pointedly if bringing hope was a primary reason for her writing.

Yes! She affirmed, “but not false hope,” she continued, “being optimistic is the only way to go.” Leaving time for a reflective pause, Dr. Lipska punctuated her sentiment, “we have nothing to lose by being optimistic.” Dr. Lipska remarked that science is evolving so quickly that diseases we once thought of having no treatment options are now manageable, and in many cases, curable.

Her scientific mindedness leaves plenty of room for human relationships. Dr. Lipska described her doctor as, “empathic and understanding.” She expressed thanks to her family, and identified one tactic, “engaging loved ones,” integral to enduring her difficult clinical trial protocol: targeted radiation and immunotherapy.

Treatment, trials, and quality of life

Lipska’s brain cancer–metastatic melanoma, presented at one time with as many as 18 small melanoma tumors in her brain, concentrated in her prefrontal cortex, the seat of personality regulation, among other vital functions. Targeted radiotherapy aims to damage the small tumors before her treating physician administers an immunotherapy agent to seek and destroy the damaged and vulnerable tumor cells. The immunotherapy protocol was available to Lipska after her enrollment in a clinical trial. The eligibility criteria required that enrollees exhibit no “live” tumors. Lipska underwent a final pre-enrollment MRI scan to ensure her brain was clear.

Lipska shared her images with a trusted physician outside of the trial. Her doctor found live tumors indicated on the MRI scan that were not identified by the clinical trial physician. Lipska faced a choice to divulge her sensitive information, which would render her ineligible for the trial, or proceed with the results of her second opinion undisclosed. The decision making process is best left to Lipska’s adept storytelling. But when I asked if she made the right choice, she wisely stated that, “everyone is clever in hindsight.”

I told Dr. Lipska, during my awake craniotomy, I was faced with the choice to pursue an aggressive resection, risking left-sided paralysis, or err on the side of caution, protecting much of my motor and sensory function, but leaving tumor in the margins of my surgical cavity. I explained to her that my decision to follow the more conservative tack was motivated by a desire to play with my young kids at home. Lipska emphasized the importance of quality of life in a patient’s medical care, and she raised an example: the use of steroids and the trade-off for negative impact on quality of life, most significantly mood swings. This example resonates with me and I trust many others in the brain tumor community.

Survivorship

I asked Lipska if she felt equipped with a clear survivorship plan following her treatment. She struggles with the ambiguity of survivorship. Even with the label, ‘survivor,’ she isn’t sure it is the correct term. Our conversation reflects the tone set in the Epilogue of her book: is it possible that those in the metastatic cancer community and others with tumors exhibiting high recurrence rates may never be survivors? Lipska displays careful and thoughtful consideration of these weighty issues that threaten the core of our relationships to our own bodies–will the cancer return? Will my body betray me? Dr. Lipska fears a return of, “a caricature of [herself],” affected by recurrent tumors invading and swelling in the complex networks of the brain, returning her to the brink of madness.

An attitude eerily similar to my own, and many others I meet with brain tumors and cancers of the central nervous system, we fear most for our families who are left with, “a deep, dark hole; an empty hole: black and grim,” following our deaths. Dr. Lipska decided to fill this hole preemptively with images, books, and memories with her husband, children, and grandchildren.

Lipska and I shared sighs and grunts, nonverbal signals mysteriously transmitted by telephone, to share a space of mutual understanding. We have permission to allow ourselves to enter this space because we are anchored by Lipska’s commitment to optimism. Recall, this is, “the only way to go.”

Combating stigma

I concluded our conversation asking Lipska to speak about the importance of research funding allocated by the NIH. Lipska quickly calculated the social cost to America from poor handling of mental illness, her neuroscientific specialty, of approximately $200 billion. The NIMH is a very small institute within the NIH, yet 20% of Americans are impacted by mental illness. Lipska is quick to emphasize the disproportionate funding with respect to the affected population.

“Mental illness is a disorder of the brain,” Lipska states plainly. She decries the continued stigmatizing of mental illness, and she skillfully connects the taboo of mental illness to the taboo surrounding cancer, from earlier in her life in Poland, where cancer was a perceived weakness by the individual rather than a disease.

“People should never feel guilty that they are sick.”

I encourage readers to spend time with Lipska’s book. Her expertise, her vulnerability, desire to help others, to give hope, and to confront stigma offer benefits to any reader. These valuable lessons are made even more meaningful when given voice by another member of the brain tumor community.

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.”

The Benefit of Death Talk

I addressed a large audience of 250 friends, family, and community members in a public “talk,” several months following my diagnosis of glioblastoma—a grade IV malignant brain tumor. I rehearsed my thoughts, writing posts for my personal blog, Glioblastology, beginning in October 2016, four months following my hospital discharge, after brain surgery and intensive rehabilitation therapy in an inpatient, acute rehab setting. I spoke openly about the population statistics for persons living with glioblastoma, punctuated by a five-year survival rate of roughly 5-8%. On the reality of confronting death, I acknowledged my fear, but I told the audience, “we face fear with familiarity.”

Facing fear with familiarity would be my mantra during the following months of public speaking, blogging, and personal research and writing in the domains of research oncology, narrative medicine, and end of life care, culminating in the preparation of legal documents, including an advance directive. Next week I deliver a lecture in the auditorium of Riley Hospital for Children and broadcasted across the Indiana University (IU) Health Network. My lecture is next up in the monthly series organized by the Fairbanks Center for Medical Ethics. The topic is “Narrative and Physician-Patient Dynamics.”

I earned the opportunities that are set before me: behind each lecture to a room of clinicians is a fumbling and awkward guest spot in an undergraduate classroom, for every intimate seminar discussion with fourth year medical students on the cusp of residency is a rambling Facebook live broadcast; each funded opportunity to attend a scientific meeting is supported by hours of personal research with “out of pocket costs” for very expensive clinical text books—don’t bring this up with Whitney! She ought to be given an honorary CPA for her ability to stretch her hard work that results in our primary income and my disability disbursements and part time work to accommodate our kids’ school fees, housing costs, and my Amazon habit. Each invitation to author a guest blog post or co-author an academic paper is supported by thousands of draft words in never-to-be-seen posts and papers.

The accomplishment I am most proud of is my relationship with the end of my life.

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.

Ironic.

This is all to say, being the recipient of a devastating cancer diagnosis has made me more vulnerable to bombastic claims about the roles of turmeric and curcumin in cancer care than honest and open dialog about death. Something about this is both culturally instructive and tragically unfortunate.

“Death is having its moment,” tweets The Guardian in promotion of this story, “How Death Got Cool.” Let me tell you: the reports of death’s coolness are greatly exaggerated. Many of those in my community, the brain tumor community, we are fixed in a rather unique situation. Our tumors are changing, growing new blood vessels to feed themselves, creating a poisonous “tumor micro environment” that results in deleterious effects to neighboring healthy cells and producing resistance to chemotherapeutic agents sent in to kill the very cancer cells, which are contributing to this drug resistant environment. Many persons living with lower grade brain tumors are set on a trajectory toward aggressive transformations of their tumors into higher grades. Those of us with grade IV gliomas, glioblastoma, are facing the same standard of care protocol that has been with us for for nearly 20 years.

We face death.

I am sympathetic to the trendiness of death talk. A necessary evil, as it were. An astonishingly small number of persons with brain cancer are referred to hospice services. Patient advocacy includes making our voices heard both with respect to treatment decisions, but also with respect to declining further, non-curative treatment. The medical community must do better to usher in these conversations earlier.

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.

Unfinished but timely: on the patient perspective

Note: I wrote this post yesterday after reading the article mentioned in what follows. I did not publish. I wanted to return, edit, clean up, ensure my case was compelling.

Instead.

I missed a window of opportunity to strike while the iron was hot, as it were. Tonight Medium ran this response from @cancergeek to the piece I critique. I realize my timely response is preferable to an edited and polished version.

I hope you’ll appreciate this raw, unfinished draft for the value it offers from my perspective–the patient perspective.

I note a growing body of literature that advances the revision of medical practice in light of a personal illness experience. Scrolling the opinion and editorial pages of the New York Times, STAT News, NPR, The Atlantic, and many more outlets reveals emergency medicine physicians, surgeons, hospitalists, and so forth describing their clinical lives prior to an illness experience, followed by a narrative reconstruction of that experience, leading ultimately to a cathartic synthesis, “if only I had known then, what I’ve manage to learn now…”

On its face these are all together helpful and instructive narratives! Each of us is privileged to learn from our experiences–physicians and anyone else. Obviously, we are all vulnerable to illness; hence, these narratives stand to benefit each of us. Besides, it would be fundamentally antithetical to medical research to imagine that our knowledge of medicine is somehow complete, or extensive enough, that lessons no longer lie prone at every turn. Indeed, it is a strength of the research and clinical communities to admit fallibility and openness to change; traits which are to be honored, taught, and practiced.

OK, this all sounds good, but to start that paragraph, I said, “on its face,” what gives!?

Each evening before bed, I return to four or five articles that I have opened in browser windows on my phone from daily email roundups, Twitter, Facebook shares, etc. Typically these are healthcare policy editorials, new medical research releases, or, no surprise, medical narratives like those that I described to you.

Last night I focused attention on this piece from NPR’s medical news service, Shots, carrying the compelling (if not click-bait) title, “Brush with death leads doctor to focus on patient perspective.” With apologies to NPR, I’ll pick on this article. I cannot imagine that the doctor was oblivious to the “patient perspective” prior to their “brush with death.” I’ll concede that what is meant by the headline is to suggest a reorientation of priorities following a traumatic experience (and titles/headlines are an editorial call), but let’s be fair to the subject of the article and not gesture toward the idea that only by way of trauma might this clinician be brought to focus on the patient perspective. That strikes me as uncharitable.

More robustly, both as a response to editorial teams generally, and to those attuned to this physician-turned-patient narrative genre, particularly, I continue to implore you to tap into the patient community not only for one-in-a-million illness recovery/survivorship stories, and make-a-wish feel good coverage, but to earnestly derive action-oriented critiques of the American healthcare system. The physician-turned-patient narrative offers great utility because it carries both credibility and a familiarity of the system that is critiqued. There is an inbuilt plot twist because the doctor learns through role reversal. Yet these narratives always lead with a clinical orientation and so are inherently scope-limited.

The patient community also carries intimate knowledge of the healthcare system, policies, protocols, and knowledge of disease and symptom management. We are expert communicators of the healthcare system because we field telephone calls and visits from family, friends, and coworkers.

NPR reports these words from the brush-with-death clinician:

“To listen to our patients with a generous ear does require a willingness to relinquish control of the narrative […] Our questions allow for the possibility that we do not already know the answers. By not dominating the flow of information, we allow the actual history to emerge.”

Let’s follow doctor’s orders! Extend a generous ear to our patients who are navigating our healthcare system, interacting with clinicians, thinking, feeling, and living our diseases. If role reversals and plot twists portray the physician as coming down from on high to learn from the patient perspective. Let us also encourage our patients to reconstruct their experiences that they may be lifted up to exercise the influence of a clinician.

I am an author informed by disease. Physicians, patients, we all have lessons to learn and stories to tell. We may bring to light a path forward for both physicians and patients that we may travel together as we recognize our shared humanity found in close proximity to the practice of medicine.

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

Measure What Matters

At the funeral, in the foyer of the church, amidst the sea of grieving strangers, herding their way into the receiving line, he said to me, “I wish my dad would hug me. I’m not sure he’s even said ‘I love you.’”

Don’t be misled; the funeral isn’t for his old man. Time remains to reconcile the regrets. To offer a hug and say, “I love you.”

I recall shoe gazing and nodding in furrowed-brow and puzzled empathy.

“I hug my kids,” I thought, two of them then, three now, “all the damned time.” Later that same day I was blowing raspberries on my middle’s exposed belly while those earlier words—“wish he’d hug me,” paced a groove in my mind. My boys likely wish I hugged a little less. I suspect their aversion will increase, with their ages, culminating with outright avoidance come middle school. The baby, though, “Little Adam,” he still goes for three big squeezes and a smooch at bedtime.

This is the stuff funerals are for, prioritizing, reflecting, like an off-cycle New Year’s resolution. We die so that the living can figure out what they’re supposed to be doing. I suppose this is why it’s uncomfortable to attend funerals.

A financial advisor, an acquaintance, posted to Facebook, “What counts as rich? Not rich with friends or family, but assets, holdings, a salary. I want a number,” the post concluded (my emphasis). Comments followed (though, not mine). The only sense in which I am rich is the former.

The problem, I suppose, with measuring wealth in relationships, is presupposed by the financial advisor: it is not quantitatively evaluable. What we measure is what matters. A quantity of relationships is not the desired end, otherwise Facebook would be good for us, instead, it is the quality we ought to measure, yet no quality scale exists for relationships.

It is evaluation that resonates with me. As a person living with an advanced illness, measurement and evaluation are central to my life. Occupational and physical therapists evaluate strength, balance, coordination, and range of motion, radiologists employ imaging protocols to measure changes in my brain that are indicative of disease response to treatment or progression, my neuro-oncologist evaluates the physical symptoms of disease, looking to maximize therapeutic efficacy and mitigate side effects. Ultimately my wife and I revise the probability of my continued survival given a set of variables informed by many of these inputs I described. In a technical sense, this is conditional probability. In real life, it is nail biting. Each time I cannot remember a name, forget a word, lose my balance, complain of light-headedness, or trip on the turned-up corner of the threshold rug is cause to scrutinize the event. Will we look back on this moment, as the first sign of my cognitive decline?

Folks like to say things like the following to comfort me—though I suspect it is more to comfort them, in the face of my seemingly random and devastating diagnosis, “I could get hit by a bus tomorrow. None of us know when we will die.”

Fair, but unless each time you cross the street you think to yourself, “Will this be the time that I am struck dead by a bus?” then you are drawing a false equivalency between the uncertain timelines for our passing. This sort of thinking, the sort of thinking where every misstep raises a flag, produces anxiety, and if you do not think so, here is a recent article published in STAT News (link) that reports one in five cancer patients develop PTSD within six months of their diagnosis.

The quantity and quality distinction is especially salient in these cases. Quantity of life is the lesser half of the diagnosis-prognosis relationship, that is, quantity of life, how long you live, is the deadbeat who “married up” to quality, yet quantity gets all the attention. As the financial advisor crudely stated in the Facebook post, “I want a number!”

Our chief metric for drug approval and the measurement the newly diagnosed latch onto is overall median survival. Indeed, I have appealed to this number several times to convey the seriousness of my diagnosis. Mainly to fire back at the “hit by a bus” crowd. I’ll think, “Sure, but is your bus coming in 15-18 months, with little braking and steering innovation in 20 years?”

I wonder lately, why the hit-by-a-bus crowd has been bothering me so much, and that thought is closely related to my reticence to openly share the (relatively) good news of a stable MRI scan. You’d have thought I would like to hit all the social media channels with news of a stable scan—stable meaning the areas of enhancement on the MRI images, indicative of tumor, are “stable,” have not progressed, when contrasted with the previous scan, eight weeks prior. If you follow me on social media, you recall I paraphrased the impression of my recent radiology report with the following words, “You aren’t better, you just aren’t worse.”

The truth of it is this: if I celebrate my good scans, if I hint that I am outliving the survival curve, then a culture that is steeped in quantity of life is placated, paying little mind to quality. We are a culture of whatever-it-takes life saving measures, poor advanced care planning, and doctors who view death as failure, thereby obstructing the end of life care that is of equal import to beginning of life care. I am a proponent of family planning, replete with a commitment to pro-choice policies, so too am I proponent of end of life planning, which includes thoughtful analysis, design, and implementation of policies, procedures, and protocols that prize patient and family choices in the end of life decision making process.

I am wealthy in my relationships. My kids won’t wonder about hugs. I am not rich in the numbers, but the immeasurable, the intangible, the quality of my life is on my mind. And my retort to the financial advisors: quality is priceless.

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.