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.

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

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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

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

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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.

Grieving the Life that Is Not; Accepting What Could Be

In this post I examine my deep sadness, and I find it grounded in the notion that I grieve the life that is not: not the life that I live now, but the life that could have been, if I pursued another path, but did not, and so I grieve the loss of that life that is not; not what is, but what could be. Grieving has manifested with great sadness, but by the end of this post I find my way toward new possibilities grounded in acceptance.

On its face, one would think grieving a devastating medical diagnosis (c71.3) would manifest sadness involving the future loss of one’s life that he is accustomed to living and the attendant worries about his spouse, their children, family, friends, relatives, coworkers, and so on. We fear our deaths, and we fear how others will fare after our passing, and so it is reasonable to guess that we grieve the loss of our actual lives, as they exist today. This is grieving the life that is.

Surprisingly, I grieve the loss of my life as it could be, what I have called, the life that is not. I grieve the many possible lives that could be mine, or could have been, but now fold under the faculty of imagination. I stand only to lose the life that I lead today. Most generously, the life I could live in five or six years time, which significantly limits the range of possibilities that once were.

I acknowledge this grief is self-centered, and I offer little defense of this perspective other than to gesture toward the careful end of life planning and estate documents I have prepared with my wife, the commitment I have made to my children to seek happy moments for memory-building each day–difficult as those moments are to find some days, and to remind myself and others that my motivation toward writing, speaking, and meeting with researchers, clinicians, and those in training, is to leverage my experience in service of benefitting other patients who face their own grieving for the loss of what could be, but is not.

Quantum mechanics describes a wave function. The wave function describes probable positions of theoretical constituents of a quantum system where the exact position of entities cannot be determined, or predicted, without taking a measurement. This is a very sloppy summary, but it is helpful. Stay with me.

In more plain language, by way of example, here is a picture of physics pre-quantum revolution. We could take the initial conditions of a baseball duel between pitcher and batter, accounting for pitch speed, bat speed, ball spin, pitch trajectory, initial moment of impact, and so on, using classical mechanics, a physicist may derive an accurate prediction of exit velocity, trajectory, and distance travelled of the ball leaving the bat. The physicist could say, “here is where the ball will land,” and we could find the ball actually landed in just that spot.

Classical mechanics, though fraught with some intractable problems, is elegant because the theory space between what is predicted and what is actual, is narrow. Given a complete set of initial conditions, classical mechanics could predict the past and future universe. All of it. The first grand system to unify earthly and cosmic phenomena. Think of the scope, power, and satisfaction of theoreticians working in this domain! Little in a classical system is left to uncertainty. The world is determined.

In the quantum system, we no longer have bats and balls. There are instead theoretical entities such as electrons, which are very little like a ball as we conceive of the term, but are “smudges” in spacetime that can never be fully accounted for. The physicist instead accounts for the electron’s position by way of a wave function, a mathematical prediction of the many possible locations of an electron. A measurement can be taken to more accurately define the position of the electron; once the measurement is taken, the wave function, the description of possible locations, ‘collapses.’ The quantum system is uncertain, its theoretical picture of the world is unverifiable, if we take verification to be something we “see” with our eyes, and not merely detection by computerized instruments. Einstein famously resisted adoption of the quantum world finding it to be too indeterminate.

My life no longer resides in the determinate world of classical mechanics. I am an uncertain entity defined by statistical possibilities.

I grieve the approaching collapse of my wave function.

I accompany Whitney to work each Wednesday. She treats patients admitted to the hospital. I sit outside of the Starbucks, drinking coffee, reading, and writing. This is my favorite activity because it places me in the presence of surgeons, oncologists, internal medicine physicians, radiologists, nurses, therapists, and medical students.

I eavesdrop on conversations about rounds and residents. I discern what the med students are studying by listening closely to their peer-to-peer flash card quizzes. I listen for terminology that I may be able to define.

On pains of extending a metaphor beyond its usefulness, I imagine a possible world where I became a surgeon to resect my tumor, not the patient. That wave function has collapsed on my present location, outside of the Starbucks, jeans and flannel shirt, not in scrubs and gowns, stethoscope tasseled around my neck, leading the cadre of residents into the operating room.

Naturally people often ask me how I am doing. “I am doing well,” I say, “I am rebounding from my last chemo round, and my energy is coming back.” Of course this is a superficial response to a superficial question, but it is how we get along in the world, interacting with others, prioritizing politeness over candor for the sake of cooperative living, and insofar as I tend toward politeness, I have few complaints with these social norms.

Though should I be candid.

I am very, very sad.

I am not sad for losing my actual life–the life that is. My wife is strong, my kids are emotionally mature, our extended families are active in our lives, our communities of support share our values, our life insurance policies, college funds, and savings accounts will not support my family indefinitely, but all will be well beyond my passing. There is sadness here, but there is also my supreme confidence that Whitney, with an army of support behind her, will see our kids through, toward successful lives, relationships, and children of their own.

When I reflect on my deep sadness, I find this feeling grounded in the loss of the life that could have been, but is not. The range of possibilities narrow more each day. I stick my nose into medical journals and pre-med text books in a naive and misguided pursuit of theories and terminology that at some future time I apply to a school of medicine. I yearn for a career in medicine. We have terrific accounts of physicians turned patient, why not patient turned physician, I wonder. To dwell more on this failing and naive hope for the future is to further exaggerate the life that is not, proportional, if not causally connected, to my deep sadness. The determinate and certain classical world is now overthrown by the uncertain predictions of statistical probabilities.

Friends, as I take myself to be in the presence of narrowing possibilities, sitting outside of the hospital Starbucks, know that I am pressing myself to learn more, to work harder, to meet more clinicians, to schedule more speaking events. Grieving is a process toward acceptance, and acceptance of a current state is a measurement taken. With new data in hand, perhaps it is time to revise my initial conditions and be open to a refreshed range of possibilities that exist in this new reality of not what is, but instead, what could be.

Self-Depracating Journey Through My Higher Education Past and Uncertain Future

In this post I begin with more confession than narrative when I juxtapose my innate intelligence with my poor study habits. My intellect is wasted when my scholastic will fails to promote my best interests. I then lament the loss of potential that I imagined for myself with a future career in higher education. I conclude by recapturing at least some of that potential, struggling to make sense of where to find my place and values amidst chronic illness. Could I contribute to science or health communication?

 

A favorite instructor of mine during undergrad said (and I am paraphrasing here) that the aim of a philosophy education is to make good philosophers, not good students. On one reading, the suggestion is student duties are subservient to quality philosophy. On another reading, probably the correct interpretation, it is presupposed that budding philosophers are already equipped with fundamental scholastic skills before pulling up a chair to the philosopher’s table, but for me, in that moment, the interpretation was not important. The prima facie reading was good enough: good philosophy trumps poor study habits. This was something I desired to hear, and so the philosophical truism remains appropriate: there is no value-free observation.

Here are two further claims, the first often spoken to me, the second often said of myself, each standing juxtaposed in a binary characterization of those features describing Adam as a student, a scholar, and (though I resist common use of the term) a thought-leader. The accurate statement is likely somewhere in the middle of this dichotomy, but for effect, let’s continue.

(1) Adam is the smartest person I know.

(2) Adam fucked up some of his education.

Let’s take each in turn. On the one hand, I excel at my endeavors when I manage to see them through. I continue to meet monthly with a group of four philosophers. These are past professors who shaped my life and academic career: a director of graduate studies and accomplished metaphysician, a current chair of philosophy and well-published philosopher of science, a leading Kant scholar, who, as the story was told to me, is someone who took the MCAT exam more-or-less only to accomplish the task, and not only was the task accomplished, the job done, but he performed strongly, and finally, an emeritus professor of philosophy who chaired a department for 30 years, publishing in the field of ethics. My professor who offered the quote discussed in the previous paragraph is one member of our five-person group. Our first unofficial official gathering of this band of philosophical brothers [1] occurred while I was inpatient at an acute rehab facility, confined to a wheelchair, living in room 202 of the locked brain injury unit. Here we are, interested in Einstein, my focus at that time, while the nurses and doctors round, take vitals, administer meds, and so on. Each of these friends display excellence in their fields, and I am driven to be better, to work harder, and consider more deeply after our coffee talks (“I’m verklempt.”) During our last discussion, one topic–and these topis always arise from the ether, interesting to one of us, at that moment, and then pursued by all while coffee cools and the dregs come into view: “is aging a disease.”

I recently read an NIH paper that correlates glucose metabolism and increased symptoms of agedness. The author compared diabetes and aging. Maybe I will bring up this paper next time we meet. We never managed to settle on an adequate answer, but it was discussed that our question hinged on to further objects of conceptual analysis: just what is ‘disease,’ and what is ‘treatment’ as the concepts are importantly related.

After my diagnosis some months ago, I began a journey to become a patient expert of my disease, and I am proud of my knowledge gained in only a short period. I have zero clinical knowledge, I have no idea how to diagnose a patient, I could not draw a vile of blood, place an IV, much less shunt, stent, or suture. I do not know the molecular markers of non-small cell carcinoma. I could not make sense of the morphology of a slice of tissue taken from a brain tumor. Though, if I were to slip in the back door of a neuro-oncology conference, I could make it through the morning sessions before my identity is embarrassingly revealed at lunch.

I have always been a natural public speaker, and this is not to suggest that I could stand up and speak on anything, at anytime. I certainly must put in the effort, do the work, to learn the topic, to weave together the network of vital information. Though, I am quite good at digesting a few papers and quickly drawing out the key information, synthesizing that information, and presenting that information in way that is digestible for large audiences.

Let these be my pieces of evidence in support of the first claim.

On the other hand, in support of the second claim, I mention it took me longer than it should have to finish my undergrad. During grad school I often submitted excellent work, several days past the deadline. I still have a grade of Incomplete in one of my grad school classes (Note: this professor to whom I still owe a paper is also a member of the philosophers coffee group). I took the GRE and achieved at best a mediocre score. I only applied to one PhD program–relocation being out of the question for my young family. My options were limited, and I applied to the only program that made geographic sense while still recognized in the speciality area I intended to study. PhD acceptance rates in philosophy programs are more competitive than acceptance to Harvard Law School (fact check; not fake news). PhD acceptance for the program to which I applied looks something like this: 330 annual applicants, usually 5-7 candidates accepted. I was waitlisted. This means I was not accepted. I was on the bubble. I wasn’t thrown out at first glance by the admissions committee, but neither was I considered a must have. On balance, applying to only one program and being waitlisted at that one program is viewed somewhat as a success so far as the competitvive nature of PhD program admissions are concerned. Often applicants apply to a dozen or more programs with the hopes of gaining acceptance to one. Though for me, I intended to earn a PhD, and decisions less than acceptance I viewed as a rather unsuccessful outing. My professor, again, to the rescue, confided that maybe I could accomplish more as an “independent scholar” than I would manage to achieve during the seven year slog to earn a PhD. At any rate, I intended to sit out a year before applying again, securing an adjunct faculty position at a community college to scratch the academic itch. Later, the private sector came calling. Then, *ahem* brain cancer. Here I am, lost, a rather lackluster academic career behind me, all the connections, conference attendance, and research of a graduate or PhD candidate, and the technical skills and foundational knowledge to excel in a strong program. Yet, I haven’t proved able to commit to the grind of earning my spot.

Here I sit in the gray area between claims (1) and (2). Stories like, ‘Einstein couldn’t get a job,’ or ‘Einstein’s kindergarten teacher said he couldn’t read,’ or ‘Einstein was a janitor at a university and solved math problems on the board and then he and Matt Damon watched Patch Adams and solved for the speed of light in a vector space’ do little to raise my spirits. The reality is I have done little to help myself out, and before cancer would dash my hopes for a long, rewording career in academia, I did it to myself.

How is that for painful acknowledgment and confession?

I have been holding out hope for some time that after navigating cancer treatment, maybe after getting a year or 18 months of stable MRI scans under my belt–hell, I’m eight months stable now, I would rally around my academic potential, retake the GRE, dust off my writing sample, and once again apply and gain admission to a PhD program. I reflected recently that the liberal arts, and a graduate education in the liberal arts, teaches one how to effectively learn. This facilitates plug and play content to learn at will. Naive, maybe, or arrogant, but, see claim (1). I have been neck deep in molecular biology and biochem textbooks, I am able to summarize the two rival theories of carcinogenesis (SMT and TOFT), I am able to speak to the Metabolic Theory of cancer, and I have an opinion on reductionism vs holism in constructing useful biological explanatory narratives. Maybe my return to academia would be a triumphant dissertation motivating deeper exploration of a robust philosophy of the life sciences.

 

Today I accompanied Whitney to Eskenazi Hospital, her employer, and home to my future primary care provider. We are strategic in this selection, choosing a hospitalist who is usually rounding on the inpatient floors and only holds clinic a day or two each week. We figure we can get in with him on clinic days, and when my disease progresses to require hospitalization, Dr. will already be familiar with my case.

Excited to be in a hospital and not on a gurney, I looked forward to meeting a new doctor today. I have come to regret not pursuing medicine in school. Regardless, here we are navigating a beautiful hospital campus, and I am overcome with the familiar light headedness of overstimulation. The activity, flourescent lights, shiny floors, and automatic doors, I begin to put more weight through my cane to steady myself. My pace slows. My eyes shift downward to limit focus. I fear an impending seizure, or fainting episode. Anxiety or neuro-chemical imbalance? Is it the nerves? Is it the meds? Is it the brain cancer?

How will I navigate a similar environment daily in university halls.

Sunday, March 5, we will see when I address 150 or more gathered to hear me present my journey with brain cancer. Will my ingelligence carry the day? Have I limped my way through school adequately to earn my role as part storyteller part instructor?
What potential fuels the next chapter?

Notes:

[1] Philosophy has long struggled with the demographic composition of its students and faculty: typically all male, white, middle income background. Few women. Few persons of color. Few persons with disabilities. The discipline recently has been rocked with charges of sexual harassment, and the very real problems of systemic discrimination, problems within the realm of academic philosophy to address, have failed to sway the discipline in a meaningful way toward public action. Philosophy is my love, and it is my passion to defend, but the discipline has faced an ongoing intervention from within and outside the field for some years. I wish not say more here, but the representation of my group of close friends and philosophy faculty being all white middle aged men is problematic, but they are also men I respect dearly who have impacted my life in immeasurably positive ways, and I ask at least for your suspension of judgment, if only through the duration of this post.

2016 Statement on Cancer

Two years ago, December 26, 2014, I had a seizure (undiagnosed).

This year, December 25, 2016, I had a seizure.

I have brain cancer, and like many, mine presents with frequent seizures. It took 18 months of “it’s probably stress related,” and “it could be vertigo” to get an MRI ordered (May, 2016) to investigate my dizziness and left-sided weakness and reveal a primary brain tumor. Since, I underwent (awake) brain surgery, inpatient recovery, inpatient rehab, chemo, radiation, and now monthly chemo cycles. I continue to struggle with seizures as part of my cancer. I vowed not to be the cancer mascot; not to fill your feeds and timelines with Adam and his cancer story. “I’m more than my disease,” I quipped.

New strategy: fuck that.

I am the cancer mascot on behalf of an estimated 12,000 newly diagnosed glioblastoma patients this year; 10,000 of those folks won’t live much past a year. I’m 7 months out from formal diagnosis. In these 7 months after surgery, I taught my left leg to walk again, my left arm to type again, I’ve learned cell anatomy, cellular metabolism, intro to genomics, and read extensively on competing theories of carcinogenesis. I am reading medical textbooks on biochem and molecular biology. I am graduate trained in the philosophy of science. I am strong; smart; driven. I am learning my disease.

If you think I cannot learn the biological features of my cancer..

If you think I cannot advocate to medical professionals on behalf of brain cancer patients…

If you think I cannot raise money and awareness for brain cancer research…

If you think I cannot contribute meaningful academic work with respect to the explanatory framework and ontology of cancer to benefit the medical oncology research community…

If you think I cannot expose at least one vulnerability of my aggressive cancer, with positive impact to clinical outcomes…

Prepare to have your beliefs revised.

2017 is my year.

Stay tuned.

Learning Lessons this Holiday with Cancer

Defcon: Seizure

Light-headedness, bordering on dizziness, headaches, worsened by fluorescent lights, anxiety, and uneasiness, especially in large crowds, weakness through my left leg, a three-pound battery backpack and electrodes taped to my head. It is time for our preschooler’s (the older two boys) Holiday Program. I am a six-foot-two, awkwardly gaited, cane-hobbling attention grabber as I shuffle through the chaos of hundreds of young families to find seats and keep a hand (or at best an eye) on our youngest. Grandparents are there to help us, and there is an unspoken young family code that if an 18-month old is running by, drooling and smiling, you are licensed to scoop up and restrain this child-on-the-loose until a parent or guardian arrives to relieve you.

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Left to Right: Isaac, Noah, Gideon; Holidays, 2016

Whitney and I volunteer at our kids’ school regularly: field trips and “special days” celebrated around birthdays, distributed across our two boys we have enrolled, and the three years we have had at least one child attending, we’ve volunteered at Crabapple Creek often. Lately these events have totally drained me. The fatigue and other physical challenges put me in defcon five for seizure risk. My body has taken to rather sudden, mild seizures when I place too much stress on it. Like an overheating engine, after a long day, a stressful event, or over stimulation from bright lights, patterned and textured floors, or colorful walls, my brain short-circuits. I experience the familiar twitchy, dizzy, motor function loss characteristic of seizures. I usually feel it coming a few seconds before seizure strikes, and I must sit down. Immediately.

A War of All Against All

Thomas Hobbes wrote about the state of nature, a competitive, every person for herself, war of all against all. I have read Hobbes a handful of times, as I suspect many with at least a BA in Philosophy have done. My closest reading of the Leviathan, where Hobbes articulates his theory, happened in a History of Philosophy course, Society and State in the Modern World, or something like this, a seminar-style discussion course.

Hobbes imagined a violent natural state, red in tooth and claw. Each person has a natural right to survival, and in the face of limited resources, our competitive drive and natural rights lead to a life that is “solitary, poor, nasty, brutish and short.” Hobbes proposed our only path toward peace is to acknowledge that our right to survival is better protected by cooperation, and so we contract together and appoint a government to enforce our pact. This is one theory of social contract: Rousseau articulates an alternative view, but that will have to wait for another time.

My lesson from that seminar, and a close reading of Hobbes, is this: the really frightening thing about the natural state is not the literal violence of a war against all, but it is the insidious, psychological threat of the potential for war, losing one’s natural right to survival. The war is psychological; fear-driven.

Navigating big events, especially those with young families, hundreds of quickly moving children, and overstimulation of being in the center of these things, reminds me of this Hobbesian view because I feel the strain of this psychological war. I am fearful of seizure. Where could I sit? How could I avoid a scene? What if I lose consciousness? How close am I to Whitney, who will know what to do?

I am consumed by my fear, and I fail to engage meaningfully in the event.

Hobbes instructs us to, whenever possible, pursue peace. Create a contract for cooperation. I apply these lessons to my own psychological war, defcon: seizure. I seek the cooperation of spouse, friends, family, and remind myself to be honest, to trust others, to acknowledge my right to self-preservation is better protected by setting my individual rights aside and contracting with those in my community. Hobbes imagines this will be a challenge because we are competitive by nature. For those of you who have had to rely on others, given medical, financial, or other personal hardship, recognize the difficulty in sacrificing your own rights, but also notice the value in cooperative living. It is difficult to admit you need help. But to be fully present, we must give up our selfish, first-person view, and rely on others.

Dealing with Ambiguity

The Holiday Program includes a dramatization of the nativity. Our Middle child was the “blue king,” signaled by his blue construction paper crown. Our oldest was Mary’s donkey. Before the nativity the kids show off their “circle time,” a daily school activity. Each child is assigned a different “job” (“Continents,” “Solar System” “Weather Watcher” “Line Leader,” etc.) to perform and learn by doing. In the comfort of the classroom the children happily perform their “jobs” without much goading from the teacher, but under the proud gazes of grandparents, flashing camera bulbs, and strange surroundings of a new environment, the children are less cooperative. I am impressed by how well the teacher and aid handle the kids’ uncertainty and anxiety.

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Noah, the Blue King; Holiday Program, 2016

I once held a position, Senior Training Specialist, and one of the responsibilities included coaching leaders on creating and executing personal development plans with their direct reports. These “PDPs” were competency-driven, meaning we coach behaviors rather than specific tasks. A competency that many struggle to get right is dealing with ambiguity. No surprise: most of us hate change, we fear uncertainty, and we like our routines: we are creatures of habit, we like to say. To successfully deal with ambiguity, the behaviors include being present in the moment, knowing your resources, communicating openly, and making decisions with limited information, not waiting to see the whole picture.

Few deal with ambiguity better than preschool teachers. Our CEOs should shadow teachers as required “on boarding.” Better yet, more teachers should be made CEOs, or at least paid like it! Teachers live in the moment with their kids, looking for opportunities to turn every day experiences into lessons, going with the flow, embracing change, helping their kids be part of a process rather than only gears in the machine. We all want to be part of something, and working in cooperation helps us achieve a common goal.

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Isaac, Mary’s Donkey; Holiday Program, 2016

Showing Up for the Holidays

Cancer is filled with uncertainty. The rhythm of my life is monthly chemo, bi-monthly brain scans, repeat until the tumor grows back. In the words of my neuro oncologist, “the probability that this tumor will not recur is highly unlikely.” My life is waiting and uncertainty. If brain scans are stable, that is, show no tumor growth, what therapy is working and should continue? If we see tumor growth on the next scan, what treatment failed?

My therapies include (or have included) radiation, chemo, Optune Tumor Treating Fields, ketogenic diet, diffusing essential oils, and nutritional supplements. I monitor these therapies closely to narrow variables so success or failure can be attributed to a therapy, but all this is dealing with ambiguity, attempting to make decisions based on limited information.

Of course the biggest uncertainty that my wife whispers in my ear as we share a bedroom with our sleeping baby in the crib beside our bed, usually the older two boys have found their way in to snuggle, and the five of us are tightly packed in these close quarters, reminded that we’ve given up our own space to move in with my parents, and they have given up their space to welcome us, is that each Holiday, this Holiday, could be my last Holiday, or the last Holiday that I feel well enough to be out of bed, attending Holiday Programs.

This is why I go to see my kids dramatize the nativity, even though I attract strange looks, accidentally step on people’s feet, and risk seizure. This is why I show up, because each moment with my family is a sacred moment.

Learning Lessons

We can draw lessons from my experiences because they are not only my experiences: they are our experiences. We all face uncertainty. We all face difficult decisions. We all have individual goals and have to balance our desires with those of our community. What I am learning through writing this blog is that dealing with a grade IV glioma, a primary brain tumor, a disease without a cure, is that my life experiences are distilled, different in degree, maybe, but not different in kind or type from the challenges we all face. We walk a similar journey. I give voice to our shared struggle like tasting a concentrated ingredient on its own makes it easier to pick out in a dish.

Here are some more of the lessons I am learning this Holiday season:

  • Put your individual hang-ups aside and recognize we all need help from family and friends. Focusing only on yourself leads to a Hobbesian state of nature: psychologically damaging and fear-driven. Ask for help! Cooperative living is peaceful living.
  • Do what our teachers do: deal with ambiguity. Do not fear uncertainty and change; embrace it. Become comfortable with limited information and closely monitor when your attempts at solutions work and when they don’t. Adjust next time accordingly.
  • Most importantly, show up! We may have a hundred reasons not to attend an event, family gathering, party, dinner, or whatever, but taking on a challenge today and making it through is better than putting it off until tomorrow and never getting the chance.

Happy Holidays, friends! I’ll see you next year. 😉

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Me and Whit, watching the kiddos; Holiday Program, 2016