Tag: Patient Experience

My Sabbatical Year: Release and a Vision of a Just Society

June 10th, 2022

The Sabbatical Year

It’s my shmita year. My sabbatical year. My year of release; a year to let go. Curious? Confused? Intrigued? Smiling? Read on.

This month, June 2022, June 10 to be precise, marks six years after I was picked up by a medical transport van from the “brain trauma unit” at an acute inpatient rehab hospital on the northside of Indianapolis, with Whitney, to attend our first office visit with my neuro-oncologist, nearly two weeks following surgery. My significant motor impairment following brain surgery landed me in a rehab hospital to relearn how to walk, bathe, dress, and feed myself. We knew the tumor was large and appeared “mean” (my surgeon’s words), but we hadn’t yet received the official diagnosis–the pathology.

On June 10, 2016, we heard the word glioblastoma for the first time. This arbitrary date serves as a surrogate marker for when I “got” brain cancer, and so we recognize this date as significant. In truth, both the imaging and my surgeon’s perspective suggest a non-malignant brain tumor had been growing for months (years?) that ultimately underwent a “malignant transformation” to become an aggressive malignant brain tumor.

Patients identify different dates of significance to revere their diseases (In a Kierkegaardian fear and trembling sort of reverence). For some, the date of surgery, often a craniotomy, marked by a “cranniversary” each year. For others, it is the date of diagnosis. Others, still, may point to their first seizure, or the day they went to the Emergency Department with a headache unlike any they ever experienced. Consistent with the devastation of this disease, too many patients die before any significant date returns on the calendar, and it is the date of death that sets a new rhythm to life.

The common thread is the significance of a date–not the date, but the significance of time: time passed; time remaining.

Regular readers may have picked up on my agitating in my last two posts. “I’m Telling You for the Last Time” carried a sort of urgent finality to it. The next post, “I Don’t Know How to Write About Brain Tumors,” shared a struggle for identity. These posts, as has this blog done since its inception, is a protracted balancing of two competing attitudes: The urgency of the moment when the future is uncertain juxtaposed with a slow awakening to life and what matters in the midst of its end. The former calls for reaction and the latter, for response.

My Shmita Year

The shmita, or Sabbatical year, is a tradition among the ancient Hebrew people, with contemporary analogue. The so-called Sabbatical year, the year of release, like most of Jewish tradition, finds time, neither place nor edifice, to be of central importance. The six days of creation, and the seventh for rest. Building a sanctuary in time is how Rabbi Abraham Joshua Heschel described the weekly Sabbath, or Shabbat, a 24 hour period of release from work. The shmita year is also on a cycle of sevens: seven years. Born of the agricultural society of ancient Israel, the Hebrew people were called to work the land for six years and let the land lie fallow on the seventh.

This month I embark on my seventh year of survival with glioblastoma. For six years I have worked the land of my disease, and now I let the field lie fallow. Coincidentally, in Israel, it is the shmita year, Jewish calendar year 5782, beginning September 2021 through year 5783, beginning September 2022.

The shmita year is not only a year to let the land lie fallow, but connected to the deep roots of justice and care for the poor and the other that is at the heart of people who wrote and are described within the Hebrew Bible, “In the Shmita year, debts are to be forgiven, agricultural lands to lie fallow, private land holdings to become open to the commons, and staples such as food storage and perennial harvests to be freely redistributed and accessible to all” (My Jewish Learning).

Contemporary movements within Judaism are applying the ancient Sabbatical year to new traditions and challenges: “Shmita, with its dual acknowledgment and transcendence of the agricultural and economic realm, offers an opportunity for social reset and renewal to the entire Jewish world – and beyond” (Hazon).

Hazon states plainly: Shmita is the vision of a just society.

In pursuit of a just society, I’ve found that I’ve traded my own pursuit of justice for to-do lists, the strange competitiveness for patient advocate grants and scholarships for selection in certain conferences, conversations with agents and editors about publishing work, and the sense that if you say “No” to one opportunity, whatever it is, you may not get the invite for the next.

In the commodification of people’s lived experience and capitalism’s pursuit of more, shmita is yet more powerful: “In a world of ‘get up and do,’ not everyone is equal; however, in a world of ‘rest and restrain’ everyone is equal. And this [equality] is the root of peace” (paraphrased from the Shmita Sourcebook and this commentary).

The Jewish Pastor’s Kid

I share family roots of both Christianity (Dad’s side) and Judaism (Mom’s side). I am a Jewish pastor’s kid. I say that with a grin because it probably gives plenty of cause for certain stripes of both Jews and Chtisitans to be perplexed, if not dubious. At any rate, it is the historical context of these traditions, the geopolitics of ancient Southwest Asia and Northern Africa that feature most prominently in its development, and the storied history of Biblical authorship that compel me to study and discuss. There is theology, good and bad, that falls out of the historical project, and the explicit and implied Christian anti-semitism that conceives of the Hebrew Bible only as a marker pointing to the Christian mesianic figure, Jesus.

A central theme that I identify in this history is liberation for all people. I see myself with a unique set of skills and life experiences: growing up in the church, discovering my Jewish heritage, studying in college and synagogue settings, committing myself deeply to justice, viewing the world anew as a disabled and chronically ill person, and recognizing that with white supremacy posing an existential threat to American democracy, the liberation of Jewish people in Christian spaces is one way to combat persistent anti-stemitism.

In the release from the work I have known, it is pursuing these themes that I view as part of my reset, and to take this work seriously, I need to negotiate certain trade-offs.

Rest and Release

I enter my seventh year with this disease with rest in mind. I am declaring an intention to step away from the blog for a time. I am not sure what that time will be. I’ll say this: Glioblastology began as a way for me to process my experience as a newly diagnosed person with brain cancer. The blog has transformed with me as I gained further insight and experience. Now, the time has come to lean into other facets of my life that could use continued study and internal transformation in service of a just society. I could be back here next week, but more likely, the rest will be longer.

Thank you for toiling with me for these six years. More posts will come, in time.
I’m Telling You for the Last Time

February 21st, 2022

Sometime in the early 2000’s I was in a Ford Aerostar with four other dudes, touring the midwest and East Coast. The band on tour with us tipped us off to the solution for long drives: Stand-up comedy albums (pre-podcast days). In the handful of CDs (cassettes?) they loaned us: Seinfeld’s 1998, I’m Telling You for the Last Time.

I’m sure as shit no Seinfeld, but that idea tucked itself into my pocket and rode along for the past couple decades. Burn out before you fade away type shit. Now it’s my turn.

I’m telling you for the last time.

Five years of material, and it’s time to let go. You may know some of it; I hope you do. Anyway:

I’m telling you for the last time.

The healthcare system strips patients of their personhood and observes the body with a clinical gaze that pays no mind to our identities and certainly not our distress. In fleeting moments of restorative justice amidst toning alarms and proning patients, a healer catches your eyes in theirs and you are seen.

But mostly it’s wristbands and gowns, murmurs outside your inpatient door, and rounding physicians so busy they carry their sealed tupperware lunches into the room to take a look at your incision.

It’s not the doctors, it’s the system, and when we see each other, doctors and patients, the admins are in trouble. May it be soon.

I’m telling you for the last time.

We can learn so much about patients without even meeting them (us). But to know a disease is not to know the person who has it. And we’re rich on data but short on humanity.

I’m telling you for the last time.

I don’t care about your language: I learned only the jargon so that you would hear me. Maybe it’s time to use ours: we speak in experience and emotion.

I’m telling you for the last time.

I’ll dismiss your suggestion that I wait for our visit to hear the results: I’ll read the test report when it’s posted, because it’s my data; my body. I don’t need your paternalism, I need your partnership.

I’m telling you for the last time.

I don’t care what you think about Dr. Google: I read everything I can because it’s my life, and I won’t allow your distrust or skepticism of my capacity to absorb medical information stand in the way of pursuing my care as an equal member of the team.

I’m telling you for the last time.

You don’t know who I am in a gown, and I don’t know who I am in a tie and button down, but you make me wear both, when I’m inpatient and when I’m advocating, us patients have to wear a uniform because our power is a threat. I’m too damned tired to keep up the act. You’ll see and hear me for my wisdom, not my formality.

I’m telling you for the last time.

You sequenced my disease thirty years ago, the one I share with thousands of others, to revolutionize medicine, but genomic sequencing is a luxury, not a standard of care, and all my friends are dying. There is death in the hype; death in disparities.

I’m telling you for the last time.

Your tailored scrubs and contrast Nike trainers, a few quick keystrokes and a joke with your peers, while you fluidly navigate the halls of the ill. My hairy legs and awkward gait, uncertain and unsure. Information is currency, and patients are impoverished.

I’m telling you for the last time.

I’ve honed my material for five years, and I’ve had a good run with it. All of that material you’ve heard: here and there, this talk and that, roundtables and panels, guest talks and presentations, op-eds and articles, filmed interviews and vignettes, five years of my life drafting, crafting, revising, delivering: it’s exhausted, and so am I.

I’m telling you for the last time.

Whatever I wasn’t brave enough to do before got buried in the traction that kicked up mud while the machine lurched forward. Advocacy is the product we sell. And my best work is a compilation you’ll find sooner or later. I’m proud of the work, but for my health, my ability to transform–or to reclaim, the middle finger of my skater punk youth–my liberation from the smiles and inspiration, it’s time to smash a guitar.

Thank you to everyone who gave me the stage to work that material. It was born on this blog in October 2016, when a naive 34 year old with a terrible diagnosis took to Facebook live in an Optune cap in my parents’ bedroom, after we sold our condo and turned our lives upside down. It’s time to let those memories be glossed by the nostalgia of time marching on and work the new material of long-term survivorship.

Five years of brain cancer, from diagnosis to major milestones: I’ve told that for the last time.

You can’t keep creation down, and something new, something fresh, something from a man who will turn 40, when his death was supposed to be at 35 is agitating.

Hang around for the thing I’ll say for the first time. You can’t live with brain cancer and stay safe, so let’s take risks.

More soon. 🤘🏽 -a.
Four Months, Four Years, Four Lessons: Notes on Survivorship

May 26th, 2020
“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.
- Adam’s MRI thumbs-up, May 24, 2016
- Adam’s MRI thumbs-up, May 23, 2020
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.
On Survivorship, from the Survivors

September 17th, 2018

“Why does mommy have to work all the time?” Our three year old, Gideon, asked through broken sobs when I greeted him at his crib one recent morning.

“I’m sorry, buddy, we all miss her, don’t we,” I replied, my own eyes blurry and breath shortened, choking back tears of my own.

Later this same day, or the day after, rinsing dishes following breakfast I began sobbing.

“Are you sick, daddy?” Gideon asked.

“Yeah, bud, daddy is sick,” I say.

“Are you going to throw up?”

“No,” I chuckle.

Scenes like this play out frequently, swapping the subjects and settings, themes are similar.

Our family is slogging through a waste-deep sludge of survivorship, and like quick sand, we seem to sink more each day. The new experiences of active cancer care are behind us. The quick wins and short-lived milestones are long past. Setting our eyes to the horizon reveals more angst than anticipation.

We lug the bags of survivor’s guilt behind us, recognizing we have these moments together, moments that many families did not.

We lug the bags of insecurity, too, second guessing our decisions to work, to keep busy, to be productive, to send the kids off to daycare so that I may sit in an empty house to write in an effort to satisfy a life project–papers, books, or posts–at the cost to my family of lost wages and absent parenting.

Whitney experiences terrible guilt leaving the house each morning. I feel terrible guilt that she has to.

I sat across the coffee shop table from a close friend last week, a rare trip out of the house. I shared with him the idea I was trying to make sense of: when I search for meaning and purpose, in light of my predicament–uncertain life expectancy, a desire to live fully today, a desire to aid Whitney with financial stability, a desire to achieve future aims–I am motivated to say something helpful to others about what it is to grieve the loss of future possibilities that will likely never come to be.

“I’ve never thought about this before,” said my friend, “but now that you say it, it seems so obvious! You’re experiencing things we all experience in our lives, but your experience is more […] compressed.”

I nodded.

I’ve alerted myself to this insight also. Several months following my diagnosis, when I was wrestling with acceptance of a terrible disease and what it amounted to for my life and the life of my family I expressed something similar, “my life is like everyone else’s,” I said, “but the volume has been turned up.” I was trying to get at this notion that each of us gives some thought to our relationships, to goals and priorities, to what legacy we build, and to thinking of our own mortality. For me, these occasional considerations are amplified. Or, as my friend put it, “compressed.” They become daily, high-pressure considerations and decision points.

“A lot of people work through the decisions you’re making, and they take 20 or so years to do it.” This was the response from a friend, a palliative care physician, when I rattled off the horizon of possibilities for my future direction, possibilities that narrow more each day. “But of course, you don’t have 20 years, do you?”

I am a member of a loving brain tumor community including patients, care partners, loved ones, researchers, and clinicians. Struggling with survivorship, I set out to write this post–in fact, much of what you just finished reading was my first pass–in hopes it would meet others where they are, in their own struggles as a spouse, child, sibling, parent or guardian, also slogging through survivorship. Then I realized, we are a community, and if the sign posts I’ve been reading are correct to signal I speak in ways that amplify the experience of others, how might we all learn together from our shared yet unique experiences.

I posed the following question vis-a-vis Twitter (in the following quote, I spelled out the hashtag acronyms, with brackets):

Drafting a blog post today about #survivorship. What issues do you find most challenging to navigate after the dust settles from the shock of diagnosis? #btsm [brain tumor social media] #btsmqol [brain tumor social media quality of life] #ptexp [patient experience]”

The community responded with thoughtful, vulnerable, and honest replies. My mood immediately lightened as I experienced the embrace of a community that stands shoulder to shoulder with each other as we experience our disease from our unique perspectives. In the following paragraphs, I report on many of the replies I received to my prompt. As a note of caution, I quote responsibly, but I also present these replies thematically through the lens of my own worldview. As we say on Twitter, retweets are not endorsements, and opinions are mine only!

I consider it an important observation that an inability to work and provide for one’s family is one of the most noted difficulties when navigating a brain tumor diagnosis. I ask rhetorically what does it suggest about our culture that in the face of serious illness it is employment and income with which we find our selves concerned? In my life I’ve sacrificed time on personal projects in order to fit in working hours to earn income. This is a perennial issue for me. My good friend @JBHarp82 put things most bluntly. She replies, “Guilt:feeling like a burden on others at times when unable to do things ie: not working full time to contribute financially as before.” Another reply suggests the painful loss of productivity, “it’s disheartening that while I don’t feel less intelligent, I am much less productive” (@mcintose)

It seems addressing, defining, measuring, and evaluating value and productivity are possible gaps for people living in a period of survivorship. How might our goals of care better close this gap?

Our social life is impacted, and this theme shows up in many replies, “Dealing with family/friends who say, ‘you’ve changed’” writes @PatientAdvocac4. A more direct critique comes from @Lahla42928400, “…being careful about who I let in- too many assholes out there…” Before you find that remark too harsh, here it is in softer language, Again, @JBHarp, “Loneliness:everyone comes out of the woodwork offering support but once the initial shock wears off & surgery/initial treatments & restrictions are lifted, you don’t hear from anyone anymore it seems.”

Our friends play such a vital role in helping to process our experiences, and we need those friends to match our tenor. @Emi_Livingston gave voice to this concern, “dealing with people who are still in the ‘shock’ phase, and/or who focus on the negative when we want to embrace what’s normal and focus on moving forward actively.”

How might we better revise our cultural and social norms to encourage friends of those with serious illness to remain engaged through all stages of care, not only the most acute and interventional stages following disease onset and diagnosis?

The anxiety of survivorship comes up again and again: worries about the next MRI (@JBHarp82), “Waiting for shoe to drop recurrence (already thinking of next one and just beating this time,” wrote @RipsRant. With a reminder that patients are not only tuned to their disease, @inewsham offers this insight, “Hearing about others whose cancer has returned and trying to keep those fears at bay.” For example, the death of Senator John McCain rippled through the brain tumor community regardless of political, demographic, and socioeconomic lines, I do not only speak for myself when I say we collectively mourned for the Senator that day.

Another theme to emerge is the drive toward acceptance of the “new normal.” “You’re all brave amazing people,” cheers @ChloeDrew8. She continued, “The new ‘normal’/facing life so differently to before is not to be underestimated.” The tremendous resilience and effort toward acceptance is visceral in this comment from @NancyNHuang, “I’m 2 years out and can pass for normal, but have come to realize that I will never fully recover. That is hard.” Or imagine this experience reported by @Project2Program, “After two surgeries, double radiation treatments, clinical trials, multiple chemo treatments and recovery from adverse events our biggest challenge in terms of #QOL [quality of life] is fatigue.” Striking a chord with balancing factors, @Sabine_NJ writes, “now:parenting; balance between living life (traveling) and family life.”

How might our care teams come alongside the persons under their care to pursue aims in light of the “new normal”? What we call the new normal is this period many call survivorship, and the challenges exceed those I mentioned in this post, which were: value and productivity, social life, anxiety, and ultimately accepting a new phase of one’s life, one that is like everyone else’s, maybe, but amplified and compressed.

How might we all better learn from the experiences of the seriously ill?

I was not able to include all of the many replies to my prompt. I thank all who ‘liked’ and ‘retweeted’ the question. To follow all the incredible members of our community, please navigate to Twitter and search hashtag #BTSM
Surviving to bear witness

June 10th, 2018

Sunday, June 10, 2018 marks two years after Whitney and I were transported in a wheelchair accessible van from an inpatient acute rehab facility to the IU Health neuroscience center. We sat in my neuro oncologist’s office and received news of my glioblastoma diagnosis. A kind, compassionate nurse who would become more than a member of our care team, but also a dear friend, held each of our hands.

I am unsure of what to say on the day of this important milestone, but I am compelled to offer a few words–really, the task of this blog.

I published my first post to this blog in October 2016. The staff physiatrist discharged me from inpatient rehab four months prior, and I received the GBM diagnosis only weeks before that discharge. In October 2016, I recently completed a six-week daily chemo and radiotherapy protocol, and I began the ‘maintenance’ chemotherapy cycle: five days, high-dose chemo, followed by 23 days off, and repeat.

I struggled to settle into a rhythm and direction for this blog.

Early posts revealed a thinking-out-loud style of scientific explanation, connections with philosophy, and personal narrative about a young man, husband, dad, brother, and son, internalizing a devastating cancer diagnosis. I wrote many posts with an aim in mind that never fully materialized. Posts proved too scientific for casual readers, too flimsy for academics, and too personal for many friends. I continued to write, striking a chord with some here and there. Often the reader thanked me for keeping everyone up to date, among other encouraging remarks, noting my positive attitude, vulnerability, and bravery. On the latter, I call up Abraham Verghese writing the Forward to Paul Kalanithi’s, When Breath Becomes Air. Verghese (roughly) remarks, “how brave it is to reveal yourself in this way.”

If there is bravery to recognize, it is rooted in my vulnerability.

In July 2017, nearly one year after our trip to the neuroscience center, news broke of Senator John McCain’s diagnosis. I was first notified in a tweet (a “mention”) by an academic colleague. I wept. I wept for the Senator and his family, for me, and for my family. I wrote an open letter to McCain to be published in medical journalism outlet, STAT News. The letter received an overwhelming response from people affected in one way or another by GBM, including newly diagnosed patients, others living with the disease, care partners of those with the disease, and relatives of people with GBM who died.

Article comments, increased blog traffic, and a full inbox signaled that my commitment to continued writing and posting found an audience. That audience, my audience, includes those closely impacted by this disease. Comments and emails expressed an important and instructive theme: people seek to tell their stories and impetus to do so may be triggered when people share a common suffering. GBM is diagnosed in three people per 100,000. This qualifies GBM as rare. Compare GBM incidence to breast cancer, which is diagnosed in one person per every eight. Nearly 300,000 people are diagnosed annually with breast cancer, contrasted with 14,000 cases of glioblastoma.

Consider the disparity in incidence rate.

I note these statistics only to emphasize the reality that if you’re looking for a resource to discuss your illness experience, the peer population is disproportionately small contrasted with the horror of the disease, for those with rare diseases such as GBM.

It is an honor to receive and reply to emails from people impacted by GBM. Many of these patients and care partners are now friends. Sadly, I have heard from loved ones about the death of people I emailed with frequently. It is a sample size of a population dying in the thousands each year; nonetheless, these are deeply personal losses. I am humbled to consider that in the final weeks, maybe days, before death, I was in active dialogue with a (now) late friend. I thank the loved ones who exhibited vulnerability, hence bravery, to open an inbox, to read email conversation threads, and to inform an unknown person on the other end of an optical fiber cable their loved one is now gone.

After living with this disease for two years, I extend my deepest gratitude to those who follow my journey. Thank you. We mark this milestone together.

To the patients and care partners who look to me for next steps in their own journey, or to reflect in the rear view mirror to recall and process their own experiences, I mention the broad range of experiences shared across a rare disease population, but notice each is unique to the individual.

Telling our stories to each other, to our social circles of influence, and to our clinicians is an effective way to locate our agency, that is, to discover those outcomes for which we may exercise control, amidst a disease and circumstance for which an abundance of variables exist outside of our control. Expressing our experiences through storytelling is an effective means of establishing a supportive network who endure the journey alongside us, and yes, to celebrate our milestones.

It is a fitting conclusion to say a few things about where I am today. The reality is when given a life-limiting diagnosis like GBM, everything changes, yet, surprisingly maybe, nothing changes. I am still uncertain of which alternative is favored: for all to be different or a return to the familiar.

Frustratingly, maybe, but not uncommon in spaces between such tension, the answer lies in the middle.

Many think, mistakenly, by my judgment, that a life-limiting diagnosis affords an opportunity to sort out priorities and pursue “what matters most.” For many, physical impairment, cognitive deficit, decreased life expectancy, and financial toxicity limit the pursuit of new or revised priorities and mythologized bucket lists.

What is different is the perspective that must be adopted. You still must do the laundry, but you fold the shirts with acute knowledge of your own mortality.

Two years following my diagnosis, the Adam that existed pre-diagnosis is dissimilar from the Adam, now two years on. Though, these historically competing personal identities are far from strangers. I continue to enjoy coffee with former faculty and friends, I recently submitted with a friend and colleague a co-authored chapter to an academic press, I try, and often fall short, to balance my responsibilities to my wife and family with my own aims and personal projects. I returned to work. I maintain responsibility for house chores that I am capable of completing. These activities are familiar and routine.

After an especially busy travel season, where I was in Chicago, D.C. twice, and San Fransisco within a six or seven week period, my wife reminded me that while I aim to leave a legacy in the world, my greatest contribution to the future is a commitment to be present with the family; with our boys. This tension exposes the dual nature of illness: to serve ourselves before we cannot, or to serve others while we can.

There is little success to be found in chronic and advanced illness. There is no victory, fighting, nor conquering. I find these frameworks for illness harmful. So also, there is no succumbing to disease nor losing the battle. There is life. There is death. What there is, is enduring. Enduring is another name for survivorship. We survive to bear witness. Bearing witness is vulnerability, and it is vulnerability we recognize as bravery. Survivors are constrained to record their experiences. To leave behind something permanent from the ephemeral.

If there is something Whitney and I have sought to teach others, lessons we learned ourselves, it is we live to bear witness to endure each day. Our endurance is strengthened when we commit ourselves to being on the journey with others. Thank you for hearing our story and for telling us yours.

Enduring. With vulnerability. With bravery. Together.

June 10, 2016; June 10, 2018.

xoxo.