This post is dedicated to my dear friend Jessica Morris. Rest in power, Jess. xx
I came into brain cancer in a very curious place: Young, otherwise healthy, finally getting my shit together, and seeing on the horizon an opening onto new vistas of possibility. The enthusiasm for that moment in time – life suspended above the turbulent waters that cancer churned – held acceptance of the diagnosis at arm’s length. Like the musical notation on the bass clef that anchored a song while the melody wormed its way into your ears and animated the feet beneath your beating heart, my confidence in the rhythm of fresh and new opportunities rooted my life in an optimism that the gasp of a cancer diagnosis could not quiet.
The melody of daily life crescendoed to frantic staccato notes while my body moved from scan to scan exposed to needle sticks, scalpel, and blood, but the bass hit on the quarter notes and kept me marching forward. I was of two songs; two lives. A stable life where I was a spouse, a young dad, a grad student. Another life was born in an exam room: “I regret to inform you that you have a brain tumor.” The optimism of the former life proved recalcitrant in the face of the latter. Neither story would be subsumed under the other.
Our songs, our stories, they are ourselves, our narrative identities, and for now, my life told these two stories. One story sang of hope and the other lamented hope’s loss. In the in-between space, a vacuum of meaning and a dearth of certainty; there was fear, but the antidote to fear is information, and the pursuit of information in inquiry.
The devastation of a brain tumor could not overcome the earnestness with which I pursued the science of the damn thing; the inquiry; the curiosity. And so here I was in a very curious place: Still hopeful. Still optimistic. But dying (so they said). But rather than let the virtue of curiosity dissolve into a fool’s errand, I dove into my disease, armed with inquiry, in pursuit of information, the antidote to fear.
All areas of life were fresh: only a few years married, young kids, a new job, the end of grad school, and even brain cancer was fresh. It was new territory, a rare disease, strange seizures, side effects, and cytotoxicity. For a hungry mind, I feasted on the fresh information.
Part of surviving a disease, part of being a patient, is becoming the expert in the lived experience of your illness. The mechanisms of action sit in the petri dishes and textbooks but the experience can’t be recapitulated in the lab.
Over time, the new experiences become old experiences, and the monotony of a life under medical management becomes routine. It’s no longer hopeful, nor optimistic, nor fresh, nor whatever else, but instead, life is a long, protracted chore that must be endured. There are no more surprises, only symptom burden, and without surprise, there is suffering.
Five years is my landmark.
I’ve lost the rhythm and life has been writing the melody. It is common in our community to hear of internet friends, friends of friends, and distant friends die, but this year I’ve lost three personal friends; brain cancer friends. What if what was fresh has rotted? And the devastating disease is putrid flesh decomposing on the skeleton of reality where hope once lived. Could the once unimaginable achievement five years ago of celebrating this half-decade milestone with a cold beer and a few tacos be the song’s end? Would life be devoid of surprise from here on out, and only suffering remain?
But what if things may be made new all over again?
In just twelve months time I will be six years post GBM diagnosis. If only 5% of us make it this far, what good does it do to the 95% if I don’t continue to report from the front lines of illness? I am a journalist deployed to a new world that tragically few know.
I am a voice who now embarks on their sixth year of survivorship.
I come into the realm of survivorship in a curious place: An expert in the lived experience of my illness, but not yet an expert in the geography of long term survivorship. You and me readers, we figured out the first five years together, and now we are cartographers on a more grave mission, to chart the course from years six through ten.
Do you hear it? It’s that rhythm; song, dance, and story. I see on the horizon new vistas of possibility.
Theory meets reality in this post about two frameworks, or schemas, about illness and systems of belief. I get a little technical, but you may learn something along the way! I discuss sick role theory, standpoint theory, and what it means for a person living with serious illness. The take home message is that those on the margins of society, those with life-limiting illnesses, disabilities, and other social determinants offer a wisdom that often goes unrecognized.
A Sanctioned Deviance
Sickness is a form of social deviance. A “sanctioned deviance,” to be more specific. That was sociologist Talcott Parsons’s view in his “sick role theory” that he advanced in the 1950s. The sick person, according to Parsons, is subject to both rights and obligations. The rights that protect the sick person include a base assertion that a sick person is not responsible for having their illness and a general dismissal from performing expected societal roles and functions – the deviant aspect of the sick role. And yet, the sick person is bound by obligations that include the obligation to seek treatment, to get well, and to return to performing expected social functions -the sanctioned qualifier.
From Normal to Alternative Overnight
In the early months of my illness, I embraced sick role theory. This theory resonated with important characteristics of my identity: After moving from Arizona to Indiana, a coming home for our family, I felt out of place. (I was born in Indiana, but at four or so years old, we moved across the country for Dad to pursue an ambitious and noteworthy appointment in his career.)
My social context shifted significantly. My childhood in Arizona was shaped by late 80s, early 90s West Coast trends. Skater culture was big, and the typical clothing style, activities, and attitudes of my peer group in Arizona reflected California, owing to geographical proximity and regional climate. I represented this West Coast cultural setting, not by any deliberate or overt decision on my part, only as an extension of where we lived. Like basketball is endemic to Indiana, kids in Arizona naturally grew up skateboarding or rollerblading.
What was a fairly normal cultural context in Arizona was counter-cultural in Indiana. A “skater kid” in Indiana carried a lot more cultural baggage than in Arizona. I went from “normal” to “alternative” overnight, with a cross-country move. I harbor no regrets or resentment against mom and dad for their decision to move. I enjoyed a loving relationship with both sets of grandparents before their death in Indiana that wouldn’t have developed had we stayed in Arizona. Yet the labels, deviant, punk, skater, alternative, counter culture, were to some extent foisted on me because West Coast culture just hadn’t made its way to the Midwest when we moved. Our family’s relocation out-paced the trends. I remember when Pacific Sunwear, later “PacSun,” opened in the Greenwood Park Mall, and it was mostly just the same shit that was in any random department store in Arizona. Because I didn’t fit in accidentally, by high school, I didn’t fit in on purpose.
Why do I share this?
I’m recently 39 years old, and I’ve felt like a deviant for most of my life. Reading the sick role work from Parsons met me where I was, feeling so out of place. Out of place culturally, and with the diagnosis of glioblastoma, a rare disease with only one or two cases per 100,000 people, and an average age of diagnosis 20 or 30 years older than me, I was again out of place in the “disease space.” No doubt that we’re out here, and I’ve met many of us, but there are not many young-30s parents to young kids who get this disease.
A Liability
I gave a few community talks, telling my story, beginning in March 2017, not quite a year after diagnosis, and these events honed my skills and opened doors to giving bigger and bigger talks.
Adam rehearsing a community talk in 2017
I experienced one of the most significant professional accomplishments to date when I delivered my End Well talk in San Francisco in 2019. I recall a candid conversation with End Well Project founder, Dr. Shoshana Ungerleider, in 2018, after I applied to be an End Well speaker. The selection process begins more than a year before the End Well symposium, and together Dr. Ungerleider and I made a shared plan to periodically update her on my health status in case I wouldn’t be well enough to travel and give this talk. (Whitney traveled with me; otherwise, traveling and speaking would not have been possible. Thank you, Whitney, for everything, always.)
Adam giving his End Well talk in December 2019
After receiving the diagnosis, I worked hard to reconcile myself to accepting a grim prognosis, and Whtiney and I worked hard to help our kids understand, but that conversation with Dr. Ungerleider was one of my first experiences comprehending the professional implications of living with a life-limiting diagnosis.
I was the sanctioned deviant.
Over the past couple years, this theme recurs over and over. It’s a risk to book me for future speaking events. It’s a risk to accept me for nonprofit appointments. It’s a risk to place me in a job role that demands increased responsibilities and the performance of required hours and tasks each week. (I write this, having recently accepted a new job role, knowing, even, that some of the folks involved in that decision may be reading now!)
I discovered in the past few months that I am a risk to potential publishers of my work because without a completed manuscript in hand and the usual author expectations to promote a book through readings, events, and writing promotional articles, I am an uncertain investment in an already difficult market. This places me in the odd circumstance that the thing that makes my work so important is the same thing that makes it less attractive.
Shared Cognitive Dissonance
A tragic irony of this advanced cancer diagnosis is that most the people I meet, both friends and random encounters with folks, say something to the effect of, I could get hit by a bus tomorrow! This is such a stupid thing to say, but I know it is well intentioned. The point, I guess, is to find some relatability in the illness, so as to feign some common ground of understanding. I get that. Life is fragile and precious, sure, and I see you, supporting me with the language and conceptual framework that you have onboard. I’m good. You’re good. I only ask that we keep in mind that most people don’t wake up each day wondering if today is the day that they’ll be struck down by a wayward bus, while I do wake up each day wondering if today is the day that I’ll have a catastrophic seizure, brain bleed, or some other event. Shit, I had a pretty bad seizure only a few days ago that Whitney described with raw honesty.
At any rate, that culturally we have this notion of unexpected death as a way to interpret serious illness, while we also shy away from taking risks on people who actually are going to die sooner than they should, is a shared cognitive dissonance. If your random risk of death is in a similar category to those with life-limiting illnesses than why subject the sick person to the greater risk/reward calculus? Now, in practical terms, I understand the difference here, but in the abstract, we find that that risk is a matter of degree, and mortality is universal.
Whitney and I live our lives out loud. We post regularly about living with brain cancer. This is no surprise. How many pictures have you posted about your pets, your kids, your dinner? Same here, documenting our lives, it is just that the normal for us is the daily struggle of a devastating illness, and while it is a feel good to get the likes on MRI scan days, life is exceedingly difficult in between, and within the past few months, Whitney and I have found it important to be transparent with not only the good but also the impossibly hard.
Adam and Whitney in Washington D.C. for National Brain Tumor Society’s Advocacy Event, Head to the Hill, 2017
But doing that, we’re taking our risk, to trust our friends and acquaintances to stay engaged; not turn away.
Worth the Risk
Truth is that I may not be able to maintain the new job role and schedule. That isn’t a declaration, it is only the relevant context. What does it mean for me, for my employer, if this new role turns out to be unsustainable? Might I be worth the risk?
There is a philosophical theory called Standpoint Theory that was first articulated and advanced within feminist philospohy. Standpoint theory takes a person’s perspective and social station as integral to understanding systems of belief and knowledge. The theory holds that marginalized folks are privy to understanding systems, power dynamics, and relationships in ways that those with power do not. This isn’t, or doesn’t need to be, controversial. I suspect that I have a better perspective on the Social Security Disability Income program than even the program designers and policymakers because I’ve had to navigate the program for our family’s livelihood, not as an abstract policy discussion at the Social Security Administration or in Budget Committee meetings. I know the policy up and down, this way and that, because I live it every day. That is the power of starting thought on the margins to inform the center.
What I have come to understand – and reject! – about sick role theory is that its interpretation of illness, its value judgment about illness, say, why illness is bad, according to sick role theory is this dismissal from societal functions. It is ultimately the loss of social and economic productivity that is the badness of illness, according to Parsons. The sick deviant is just that, a deviant, who may be excused from work, but that excusal must be policed because sick role theory takes economic productivity as a normative good, that is, a good that we should aspire to.
I am a liability to my employer. I am a liability to my nonprofit programming commitments. I am a liability to our family when I am at home with the kids and Whitney is at work. I am a deviant. I do not participate with the same productivity that I did pre-diagnosis and in ways that are commensurate with my peer group. As of just recently (last month), I depended on social welfare programs to support our family, and so not only do I not contribute with rigorous productivity, I am also an expense.
Am I worth the risk?
When we replace sick role theory with standpoint theory, we find that insight and wisdom come from the margins, and in a world designed by those who historically have held power, what you may characterize as taking a risk on me, and others systemically pushed to the margins, is the wisest investment that you can make.
I’m here to tell you that you are not a liability at all; instead, your marginalized status gives you perspective that those in the center would never achieve without you.
@adamhayden
What are the liabilities in your life? What liability do you present? I’m here to tell you that you are not a liability at all; instead, your marginalized status gives you perspective that those in the center would never achieve without you. This is why we must dismantle the systems that undermine and oppress, and instead, work to amplify the voices that power has sought to silence, but that, friends, is another blog post entirely.
“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.
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.
“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?
Glioblastology 