Four Months, Four Years, Four Lessons: Notes on Survivorship

“My surgeons’ skills have added time to my life, more time with my wife, more time with my kids. Thank you to my entire medical team.”

Adam, October 13, 2016

I published my first blog post to this site in early October, 2016. That post came right around four months after hospital discharge (the “Four Months” in the title of this post). I checked into the surgery floor at IU Health Methodist Hospital with Whitney early in the morning, May 26, 2016. Four years ago, to this day, May 26, 2020 (“Four Years” in the title).

In my first personal blog post, I wrote the words you see quoted above. I include those words here to signal my continued gratitude for my team. These thanks are well placed, as our family recognizes this significant day in our calendar.

Today marks four years after my craniotomy and surgical removal of a seven centimeter primary brain tumor from my right parietal lobe, an area of the brain responsible for five major functions, including sensation, motor control, and spatial reasoning.

Today we met (virtually) with my neuro-oncologist to hear the results of my recent MRI scan completed Saturday (May 23, 2020). This is a scan we will not soon forget. Masked, we entered the hospital Emergency Department because the general radiology entrance is closed on the weekends. (Radiology shares a back hallway with the ED for trauma-related imaging.) The security checkpoint includes a metal detector that reminds us of the complex social conditions that surround the lives of some people cared for at the county hospital. We also wondered what further precautions would shape the encounter during a time of covid-19 related restrictions.

Whitney and Adam pre-MRI, May 23, 2020

Worth mentioning, also, after an area of slight concern appeared on our prior MRI in February, our oncologist recommended adding an imaging technique called perfusion to this recent scan. The perfusion technique lengthens the duration of the procedure by several minutes and includes placement of an IV and additional injection (beyond the routine contrast dye) to study blood flow.

Here we were, then: After four years, something like 25-30 scans, despite our typical anxiety (scanxiety) that accompanies each routine MRI, we faced new circumstances, if only slight disruptions: Whitney’s recent course of illness after testing covid positive, the masks we donned, the secure entrance, distancing from others in the registration line, the new imaging technique, the empty hospital absent of visitors, and the pervading concern that maybe we were catching new tumor growth in its nascency.

Our visit this morning revealed news of a positive outcome: The scan shows no new growth, and our doc chalked up the concerning area to late-effect radiation damage. We might relax our concern for the near-term, and we look to August for our next routine MRI.

I do not want to let this day pass without offering something constructive after 48 months living with a disease that kills many in half that time (“Four Lessons”). These are not definitive, action-guiding principles for life. They are simpler. They are variations on a theme that I shared during a talk at Stanford Medicine X in 2019, refined and updated for my presentation at the End Well Symposium at the end of last year, and shaped by the contours of my personal manuscript that hopefully finds its way to print over the next year. These are lessons from living, while dying.

Consider your quality of life today. When faced with a decision in the operating room to pursue aggressive surgery at the risk of left-sided paralysis or take a conservative approach that would protect my motor function but leave tumor remaining in the margins of the surgical area in my brain, my surgeon instructed that I, “Make a decision based on your quality of life today, not what you think it may be in the future.” This turns out to be good advice for living in general, not only in the operating room. Each of us has an uncertain future. It is good to plan for the future, mitigate against harms and obstacles, and yet all any of us have for sure is the present moment. Arrange your life so that it aligns with your desired quality of life today, not an imagined future.

Face fear with familiarity. Focusing on the present and allowing the future to unfold is frightening because it asks first that we allow the uncertain and unknown into our lives. I suggest that we face fear with familiarity. What information is available to us today? What is within our control today? What is the immediate source of our negative emotions and intrusive thoughts? Becoming familiar with those things we may attend to in the present helps us acknowledge our fears, not to escape or dismiss them, but to become familiar with the inner workings of our brains that are wired to alert us to danger, even when that threat isn’t right in front of us. Familiarity is the antidote to fear, and I am reticent even to express this sentiment because fear is not intrinsically bad. Allow yourself to fully experience that breadth of human emotion, but center yourself with the focus on what is present and at-hand.

Consider what to say to a cancer patient. When I instruct others to consider quality of life today and leave the future uncertain and unknown, I am flirting with everyone’s favorite thing to say to cancer patients, “I could get hit by a bus tomorrow.” This phrase and the war metaphors that are prevalent in disease rhetoric are two facets of the illness experience that I’ve objected to in blog posts, tweets, and op-eds. They are more than unhelpful; they are harmful. Taking the latter first, the problem with framing cancer as a fight or battle minimizes the potential for wholeness and wellbeing that are available when an illness is embraced into our life narratives. A war leaves casualties, winners, and losers. Surviving is not a victory and death is not a failure to fight. Instead, maturity and growth through illness are possible, whether treatment leaves us with no evidence of disease or end-stage progression. Wars and battles leave little room for growth and acceptance, what scholars call existential maturity.

This advice specifically, and the next, are sensitive to the context of the patient and their preferences. I know many patients who frame their own experience as a fight, and that is their metaphor to claim. For me, in my most insightful moments, I’ve felt more the sage than the soldier. Illness leaves us with wisdom, not war.

Rethinking thoughts and prayers. This is a tricky one. We each are licensed to our beliefs, and all of us should extend as much charitable interpretation as possible to the words that others speak to us. I remind myself often that others express their very best intentions, and those intentions supersede the literal words they use. Though I’ll say this, it is very common for folks to cope with another’s serious illness by fitting that person’s illness into a Divine plan. I cannot get on board with this. It does not fit my conception of The Divine to imagine that I was singled out, given a potentially life-limiting disease, and by those circumstances, forced our kids to face the loss of a parent, so that God could teach a lesson through my experience. For God, whatever God is, surely there is a better way to teach lessons than clamp me to a table and open my skull. When encouraging someone facing illness, center your religious beliefs in what brings you comfort as the friend and observer, but be careful not to thrust your beliefs onto the person experiencing the illness. I recognize that your show of support for me is expressed through your carefully considered prayer and meditation for my healing, but healing may not be a cure. The healing may be my acceptance that no cure is available.

As you move forward, navigating these uncertain times of public health crisis, you may consider these lessons that I’ve practiced these four years: Align your decisions to your desired quality of life today. Live presently and familiarize yourself with those things that you fear. Consider healing, wellbeing, wholeness, and personal growth that may come through experiencing illness. And extend charity to others while respecting their beliefs.

To handle distress: Do as much You as possible

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

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

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

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

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

 

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

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

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

 

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

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

 

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

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

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

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

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

 

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

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

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

 

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

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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.

My wife, on the front lines

Breathless.

What time is it? It feels early.

Are my contacts in? My left eyelid feels gummy.

I reach for my phone.

Thud.

It knocks the side of the wooden bed frame.

Hot breath. Humid. Which child is pressed against my back?

I reach and grasp for the wire of the ear buds and grip the thin rubber between my index finger and thumb, and I slowly pull the phone toward my body; deliberately; careful not to pull the ear buds from the plug on the phone.

5:22am.

I scroll notifications with my thumb and nudge the sleeping child toward the center of the bed. Eyes close, and I wake to hear her alarm sound. The gurgle of the coffee maker comes next. I slide from beneath the covers and tug the pillow to replace the form of my body beside the sleeping child.

I creep quietly to the kitchen, toward coffee and morning email.

Her silhouette shifts the shadows from the hallway until her navy scrubs come into view. I smell the daily lotion that lets me know she’s close. Her hair is damp.

The metal tumbler rings as I bring her clean Yeti from the dish dry rack onto the cheap laminate countertop. I step to lean my slinking basketball shorts and thin butt against the sink and hunch over my phone with a warm glow illuminating my face. The warm mug radiating in the opposite palm.

Her lunch is packed with whatever leftovers we cobbled together from the previous day.

“We need to be more careful about wasting food, guys,” she scolded the boys the night before, “We’re entering a time when we may not be able to get as much fresh food.”

Her slip on sneakers for the commute to and from are kicked aside on the doormat inside the garage. They are not permitted to enter the house.

She leans in to kiss. Embarrassed by my morning breath, I nod my head low, and she kisses my forehead.

“Good luck today.”

She nods.

Then it’s later.

10:13am.

My phone dings from the charger. The younger two kids are running through the house, throwing pillows, and dragging blankets from each bed to a pile in the living room.

Another ding.

The text is from my wife, on the front lines.

I can’t wait for her to come home.

2020 Tumor Takedown Tailgate

It’s that time of year!! The Third Annual #TumorTakedownTailgate to benefit National Brain Tumor Society!

Join us Sunday, April 19, 2020, 3pm-6pm at restaurant Revery in Historic Old Town Greenwood, Indiana to tailgate to benefit brain tumor research!

Get your “early brain” tickets beginning today, March 1st, 2020, for only $40! This general admission ticket gets you into the event with emcee Lauren Casey from RTV6, plenty of local beer including our premier vendor Mashcraft, food provided by Chef Mark Henrichs and the Revery team, participation in our silent auction with packages from Hope Plumbing, Indy CD & Vinyl, and more, and local music.

Tickets increase to $45 beginning April 1st, so get on board early!

Early brain tickets are available here.

We also have a new way to give this year! Starting today we’ve launched a two week, limited run fundraiser with Custom Ink for #TumorTakedownTailgate trucker hats. These trucker hats from recognized classics brand Yupoong are only $25 with proceeds benefitting National Brain Tumor Society. Act quickly because the fundraiser closes on March 14!! Buy before it closes, and you can rock the TTT trucker at this year’s event or wherever you go to let people know you are raising money to cure one of the most deadly cancers.

By the hats here before March 14!

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In our first two years we’ve raised nearly $40,000 for National Brain Tumor Society’s Defeat GBM initiative, now in its third year of a five year commitment to put $10M toward research for glioblastoma. This research extends and enhances the lives or GBM patients like Adam, our tailgate event co-founder.

Thank you to our generous gold and silver sponsors!! The BlakeStrong Bowell Fund, the Luminous Fund, Bookends Financial Planning, Hope Plumbing, and Stadium Goods.

See you at the Tailgate!

Logo designed and created by Gabe Granger. All photos by Adam Ramsey.

Glioblastology: 2019 in Review

“How do you live, when you know your time is limited?”

This is the question that I faced, beginning in the summer of 2016, after being diagnosed with brain cancer. It is the question we have faced, Whitney and I, in our marriage, and it challenges how I spend my time as a parent. It is the question just beneath the surface of every interaction with family, friends, and work colleagues. This is the question I have in mind during each required call, email, form, and document submitted to fulfill the clerical and administrative responsibilities of a person receiving disability benefits. It is the question that leads me to second-guess the decisions that I have made this year. But it is also the question that prompted a successful year of new accomplishments.

In 2019, I answered this question with one word: purpose.

How do you live, when you know your time is limited?” You live with purpose. And this answer presupposes that you’ve done a little personal heavy-lifting to discern just what that purpose is in your life. In this way, my life is just like yours, purpose-driven living is an integral part of a meaningful life. But I also remain committed to the idea that while relatable, serious illness is not “I could get hit by a bus” rhetoric. Folks do not wake up each day with a bus on their mind. Folks are not reminded every few weeks of the bus by another friend facing cancer recurrence or an acquaintance entering hospice.

So that is the salient difference: we all make sacrifices to pursue our goals, and we all live with uncertainty; we are all grateful for a spouse, partner, or companion whom supports us. Our lives are fulfilled when we face challenges and achieve new milestones, but we shouldn’t lose sight of the opportunity costs, and for me, I feel the pressure of high stakes. So I pause to take stock this holiday season to share proud moments from this year, and I thank my wife, our family, and our supportive community for enabling my busy year of travel, writing, and speaking.

In community, a.

***

The year began with several collaborative projects. In January, I partnered with Cancer Health to contribute to their “Cancer Diary” series, with this “Brain Cancer Diary.” I was interviewed by Kimberly Paul for her Death by Design podcast, an interview that would air during season three of the podcast, in August of 2019. February brought continued involvement with the Brain Cancer Quality of Life Collaborative, a multidisciplinary research network investigating palliative care intervention in brain cancer. And I joined the project advisory council for the Count Me In Brain Cancer Project. I also guest spoke in a Bioethics course, where I am a regular fixture, with IU School of Medicine. I was proud to see my book review of Neuroexistentialism published with Polyphony: Conversations Across the Medical Humanities.

In Spring of this year, with Whitney, our best friend Lindsay, and Revery chef/owner Mark Henrichs, we raised over $21,000 to benefit National Brain Tumor Society in our second annual #TumorTakedownTailgate, bringing our total after two years of the event to $37,000 (Stay tuned for details for this year’s 2020 event!) In May we celebrated with our NBTS family when Whitney and I attended our third Washington D.C. advocacy day, Head to the Hill. At this year’s Head to the Hill event I joined my friend Liz Salmi to give remarks in support of the Palliative Care and Hospice Education and Training Act (PCHETA), a piece of legislation that now sits in the Senate for passage. My co-facilitator Lisa O’Leary and I also announced the start of the first ever National Brain Tumor Society Virtual Support Conversations, a monthly, virtual, peer-to-peer support network for the brain tumor community.

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Also in the spring of this year, I was honored to give remarks with our camper “Cheese Pizza” at the 2019 Camp Kesem Ball State Make the Magic gala. You can read my remarks here. In this same spirit, my friend and scholarship founding donor, Jack Hope, awarded the second Adam Hayden Philosophy Scholarship to a deserving student in the School of LIberal Arts at IUPUI.

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My summer began with a trip to Chicago where I served on a panel moderated by my friend and End Well Foundation founder, Shoshana Ungerleider, MD, hosted by MATTER Health, discussing aging in the digital age. MATTER wrote up a great post about the event. The summer continued with the first ever Glioblastoma Awareness Day. In August I facilitated a “lunch and learn” session for my employer Briljent, enabling patient-centered care in Health Information Technology sectors.

This Fall has been the busiest one yet, and I couldn’t have made it through without my parents and in-laws providing tons of overnight childcare, and Whitney guiding me through travel as I struggled with fatigue and seizures. In September I guest spoke in another IU School of Medicine elective course where I visit annually called, “Issues and Advocacy in Medicine.” I gave an Ignite! Talk at Stanford University’s Medicine X conference, and I was on the road again in October where I gave a grand rounds talk to the neurology service at Saint Louis University hospital, and I facilitated a breakfast roundtable discussion with the SLU bioethics PhD candidates, faculty, and staff.

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I was proud to see my second invited review published with the prestigious magazine, Science. I reviewed a great book on the ethics of gene editing called Altered Inheritance.

In November I organized a film screening and panel discussion of the Oscar-nominated documentary, End Game, and I served my third year as a patient-reviewer for the Peer Reviewed Cancer Research Program, a grant funding organization within the Department of Defense. I also traveled to D.C where I gave remarks to researchers, clinicians, industry, and the FDA at a “research roundtable” organized by NBTS.

This year capped off with my highest profile talk, and one that I’ve dreamed of giving since shortly after my diagnosis: the End Well Symposium, in San Francisco. With 650 attendees in the theater and 2,000 viewers of the livestream, I was honored to share my message about “Living while Dying” with a broad and diverse audience. (Stay tuned for a video!)

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And that concludes the round-up of my biggest accomplishments in 2019. Between trips and talks I tried to take care of my body. Each week on the road, takes two or three to recover, and headaches, seizures, fatigue, and bouts of nausea are mainstays, but drawing from Whitney’s strength and seeing the joy and energy in our kids’ eyes, I’m out to leave a legacy for them and to hopefully improve the world for my brain tumor community.

Cheers to 2020! I have some big things planned, and I cannot wait to share them with you!

An Evening in Partnership with the End Well Foundation

Film Screening and Panel Discussion:

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

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

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

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

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

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

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

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

An amazing interprofessional group of panelists include:

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

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

Health as Resistance

We had been brought up to notice, to take “life as it is” and turn it on the spindle of compassionate action to make it more like “life as it should be.” This is resistance (Shem, 2002, p. 934).

When short term goals of care were achieved, I was discharged by my inpatient physical therapist, with a referral to continue therapy in an outpatient setting. During a month-long hospital stay, I graduated from a wheelchair to a walker; in fact, my first mode of transportation following brain surgery was a wheelchair equipped with a plastic tray to hold my weak left arm to prevent my hand from falling limp onto the spinning spokes of the wheels while clinicians transported me from my room to the cafeteria or the therapy gym.

Slowly but steadily I practiced shuffle steps between the parallel bars in the gym, using my hands for balance and added support. Then with a bulky knee brace to prevent my leg from hyperextending, risking damage to my knee, I scooted along with a walker. Finally, I was discharged with a cane to build up my mobility over time but instructed to use a walker around the house and use my wheelchair outside of the home.

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Adam and his inpatient physical therapist practice walking, June 2016

Assistive devices are often associated with a decline in function and independence, but for me, walking only with the use of a cane was an achievement. Now, I cast my cane aside when playing outdoors with our boys, but summed up recently by Whitney when I jogged several paces, “well that was awkward.” Not to mention the last time I attempted to walk our energetic two year old, 55lb dog, he brought me to the ground. “Are you OK?!” A nearby neighbor shouted. “Yes, I usually have a cane…” I began, but I let the words fizzle out after realizing the explanation for a fit-looking mid-30s year old taken down by a happy dog required more than just “I usually have a cane.” I waved off the concerned neighbor and struggled to my feet.

See, there is life “as it is” and life “as it should be,” observes Samuel Shem, the pseudonym for doctor and author Stephen Bergman, whose 1978 cult classic House of God, describing the brutality of medical residency, continues to be a must-read for medical students. The book, following a class of young doctors beginning their art and practice of medicine, exposes the reader to the horrors of the healthcare system, but Bergman does so with dark humor. In a 2002 article, “Fiction as Resistance,” from which the epigraph for this post is taken, Bergman shares more about his commitment to fiction as a guide to understanding.

As it is, or as it was in the summer of 2016, I celebrated when I was able to transfer to the toilet without assistance, and how it should be, the recovery of my agency and independence to use the toilet on my own, and also, bathe, dress, and tie my shoes became my act of resistance to the locked brain trauma unit that was my home during this time of partial recovery. The content of my journals during this time serves as the foundation of this blog, but more than share my stories with others, my writing is (was) also my guide to understanding. Fact can be stranger than fiction, and Shem (Bergman) and I have at least one thing in common: our tools for examining the world are pen and paper.

“Other than my brain cancer,” I joke, “I’m in pretty good shape.”

As it is, I confront my health every day. Will I have a terrible headache? Do I have the familiar seizure onset symptoms, or “aura”? Does my left foot tremor when I set it down to take a step, signaling that fatigue will be problem? Does my head float, seemingly detached from my body?

I wrote a blog post recently addressing the “you might as well” sentiment: you have brain cancer, have some ice cream, you might as well. In that post I resisted the idea that serious illness affords an anything goes attitude. Paradoxically, perhaps, I suggest that the opposite is true: serious illness demands more rigor and discipline.

I rewrite my to-do list weekly, and I am happy to report, that list continues to fill with conferences, speaking, invited guest blog posts, and advocacy events. There is so much I have yet to accomplish: the book that is sitting incomplete on my laptop’s desktop, the three draft academic philosophy papers that need a little more attention before they are ready for submission, and the reformatting of my CV to seek more opportunities to tell my story.

My boys deserve the most able bodied dad they can get before his body falters and fails. Whitney deserves the maintenance of my health for as long as I can sustain before her spouse and care partner roles continue to bleed together.

What if the most punk rock thing I can do is get a good night’s sleep? What if rebellion in the face of illness is to decrease or eliminate those extra glasses of wine? What if my greatest act of resistance to terrible disease is prioritizing health?

Health, as resistance.

What if that’s how I take life as it is and make it more life as it should be? What compassionate actions might you take? What gap between “is” and “should be” will you close? What is your greatest act of resistance?


Shem, S. (2002). Fiction as resistance. Annals of Internal Medicine, 137(11), 934-937.