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.
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.
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.
We sat down as a family on a Friday night to have pizza and watch a movie.
Whitney teaches yoga three nights each week, Noah and Gideon have weekly soccer practice, Isaac wrapped up karate class just as his Scout pack kicks off another year, all of the boys have a weekly Little Ninjas class that meets on different nights, Noah and Isaac are bringing home nightly homework, and I co-lead a monthly Twitter chat and monthly virtual support group that meets on the first and third Sunday evenings, respectively. Gideon is off to half-day preschool three mornings each week; otherwise, “Little Adam” is my buddy, at my side most other days.
I am the stay-at-home parent, including the usual housework, and I am the cook. I fit in time to work on two part time jobs–one as an instructional designer with my supportive employer, Briljent, the other, a research assistant for the department chair and professor of philosophy of science at IUPUI. At least once each month, sometimes more, I serve as a guest lecturer in classes at both Indiana University School of Medicine and the IU School of Liberal Arts at IUPUI. I try to protect time for daily writing.
Whitney leaves for her day job at Eskenazi by 7:00 most mornings, and many evenings she doesn’t have time to stop by home on her way from her day job to the yoga studio. She recently started as a part time occupational therapist for the Center Grove school district, working with elementary age kids with developmental disabilities. Yes, that brought her number of jobs to four!
Because I do not drive as a result of my brain tumor related epilepsy, we rely on the support from our extended family to get everyone where they need to be. For our family of five, this feels like organizing a conference every week.
Our cultural norms, in the Western World, and especially in America, lead us to derive our personal worth from notions of productivity and earnings. We often lament how busy we all are, yet we continue to measure our status by the number of things on our plate.
As our boys get older and more independent, the daily wrestling match to change out of pajamas and dress for their day is getting easier, but changing diapers is traded in for monitoring screen time. Reading books at bedtime is replaced by checking homework and setting out clothes to ease the morning race to the bus.
Friday night.
It’s one night that we work hard to protect for our family.
Last week, we decided on Evan Almighty as our best bet for a movie that would hold the attention of our eight, five, and four year old, and that would give me and Whit a break from YouTube videos of other families–parents or guardians of young kids, you know what I mean.
The movie stars Lauren Graham as the patient and thoughtful spouse to Steve Carell’s character, a recently elected member of Congress who is visited by Morgan Freeman, playing God. Freeman instructs Carell to build an ark, and in the process Carell transforms into a kitschy pop culture Noah-like character.
In the face of the seemingly delusional Carell, Graham’s character decides to leave Carell (only to return later; Hollywood drama). I turned to Whitney, aware of my own seemingly delusional philosophical study, that I left a successful career ten years ago to pursue, and now I spend my days reading phenomenology, and writing blog posts.
I thanked her for not leaving me.
“You’re building your ark,” she said.
In the tradition of scholars and writers like theologian Marcus Borg and mythologist Joseph Campbell, we are reminded that stories need not be factual to be true. Certainly, the Noah story is just such a non-factive “truth.” To interpret what this story means, we must better understand the historical and political climate that shaped the narrative. What it means to me, more poignantly, what Whitney’s comment means to me, is an affirmation that trust, family, community, cooperation, resiliency, embracing absurdity, and pursuing goals are touchstones of a meaningful life.
“I am so busy.”
“I have a lot on my plate.”
I am just as guilty as you are, using these replies and remarks as surrogates for real self worth. As excuses to not pursue what matters most to us. As distractions and obstacles we hide behind to avoid dedicating ourselves to the hard work of going against the grain. The terrifying work of challenging the status quo. The risky work of saying “no,” and protecting time for self-work and family connectedness.
We are all works in progress.
We all must make our meaning; find our authentic self-worth.
We must build our arks.
We cannot do it alone.
Clear your plate, and let’s get to the really valuable work.
Last week Whitney and I launched a GoFundMe campaign, and we published our needs to the community with this blog post. We reached our goal within hours of the post, and in the following days, we doubled our goal. We are incredibly thankful for the amazing community that continues to support us, now in our third year facing brain cancer. We received generous contributions from all areas of our lives! The Facebook community of friends and family shared our campaign almost 60 times! On Twitter, the home of my academic networking, many of our followers retweeted the blog post and contributed. On LinkedIn, despite it being the social platform where I am least engaged, we managed to drum up support after a friend and healthcare professional shared the blog post, calling it a “must read.” For the generosity and social awareness, thank you does not adequately express the months, if not years, of easier breathing our family will experience after your selfless giving. Thank you.
I am most humbled by the fellow patients, care partners, and widowed members of our community who left comments and shared posts explaining that our family’s financial struggles, though painful and contextualized to our circumstance, are nevertheless common to nearly everyone facing serious illness and advanced cancer. When I manage to capture in writing the experience shared by so many others, I am reminded of my strengths and the privilege I have to raise my voice. The call was to help us financially, and we thank you for that, yet what I carry with me are the thanks offered by others for explaining financial toxicity in an accessible way.
In the 1950s a sociologist named Talcott Parsons described a concept he called the “sick role.” According to Parsons, people who are ill have both rights and responsibilities. The rights are to protect the dismissal from normal functions in society, while the responsibilities of the ill are to partner with healthcare professionals in an effort to get well.
Illness is a social deviance, according to Parsons. Deviant because the seriously ill are no longer meeting the expectations of their assigned social roles. And so while not responsible for their illness–not blameworthy for illness–the seriously ill operate under an umbrella of sanctioned deviance. Deviance that is policed.
I was discharged from the hospital after deemed medically stable after brain surgery. I was transferred to an inpatient acute rehab facility, where I started in a wheelchair. I was discharged from the inpatient facility able to walk with the use of assistive devices. While inpatient, my bed and wheelchair were outfitted with alarms that would alert staff if I tried to get up or transfer on my own. I rang the call button if I had to use the toilet. For weeks I had someone standing with me in the bathroom. Policed deviance.
These days, I work part-time, but I report my earnings every month to two different agencies. I undergo medical review annually. We submitted a “doctor’s note” to lobby the school transportation office to allow a bus stop in front of our home so I would not need to navigate potential weather conditions to walk the several houses to the assigned bus stop. I am offered the occasional honorarium (a one time payment) for speaking in conference settings, but rather than thank the organizers and take pride in my work, I complete paperwork to account for my earnings.
This is policed deviance. This is the sick role, some sixty years after Parsons introduced the concept.
Our algorithms saturate social media feeds with targeted advertisements, but our health and insurance systems are unable (or unwilling) to take readily available data, such as the nationally standardized diagnosis codes (ICD-10) to drive decision-making logic that, for example, excludes people with terminal illness from medical review.
I answered a call from my long term disability provider just this week with the question prompt, “What more support do you need from us to get you back to full-time hours?”
Curing my brain cancer would be a good start.
I conclude this post with where I began: Thank you for the generous outpouring of support you showed our family these past two weeks. We are profoundly impacted by your generosity, and all of us are enjoying a better, more peaceful home life as a result of your giving. We stand a chance now of actually getting back on our own two feet–or two feet and a cane, whatever. Our kids continue their activities. Whitney may be able to step away from the several “pick up days” she takes at work. Thank you, thank you.
Still, there is the nagging reality that our deviance is sanctioned, our freedom is policed, and so beyond the existential threat of serious illness, there is the threat of regulatory authority that could take away our protections at any time. That threat may only be met through civil, honest dialogue, and a commitment toward protecting the rights of others. But rather than view people with illness as deviants who must be policed in their dismissal of social roles, how might we lift up the experiences of the seriously ill to teach us all something about humanity? About how to live each day? About insurance and healthcare and what “work” is rewarded. How might we elevate serious illness rather than police it?
Many have reached out to our family recently with help or requests to offer help. For that we are grateful. Many have said, “what can we do?” We invite your support. I want to address what is so challenging about living life with advanced cancer. If you are interested, I encourage you to read on, to learn more about the difficulties of “survivorship.” If you would like to help, you can find information near the end of the post. If you are facing your own experience of illness or are affected by those who are, this post may shine a light on these challenges, so that you may be supportive to your loved ones. We truly are in this together.
When facing a serious illness, in our case, a terminal cancer, the diagnosis–receiving it, I mean, sitting beside your spouse or loved one, across from your oncologist, while their nurse reaches to grasp your hand–is a watershed moment of devastation and uncertainty, but before planting your feet on the ground, you are undergoing more scans, preparing for surgery, coordinating daily rides to the radiation therapy treatment center, and learning how to mitigate the side effects of chemotherapy. This is “active treatment,” and for all of its complications, interruptions, and social costs, at least you are “doing something.”
After active treatment, after the diagnosis is accepted, after life with brain cancer shifts from the center of your life toward the background and casts a shadow to shade every experience, this is when we feel most helpless; frustrated.
This is survivorship.
I’ve talked about this before to describe the uncertain period of time after active treatment, but before “disease progression,” the clinical language for the growth of cancer.
Brain cancer, even after near-total surgical removal, can, and often does, “recur” because microscopic cancer cells are difficult to distinguish from healthy tissue in the brain, and these hidden cells grow quickly to form new tumors. In the words of my neuro-oncologist, “it is extremely unlikely that you will not have a recurrence.” It is so unlikely, in fact, that we wring our hands nervously every eight to twelve weeks, waiting for the MRI results, for “disease monitoring.”
Scanxiety.
An MRI scan showing the “surgical cavity” after removal of Adam’s brain tumor. The darkened area is the void left after removal. The lighter areas are inflammation and possible cancer cells.
But regular episodes of brain scans, or “imaging,” and the 24 to 48 hour lag time to meet with our oncologist to hear the results, does not adequately capture the full experience of living each day with this ambiguity. Imagine that regrowth of cancer is imminent, but when the recurrence may occur is totally uncertain. There are no preventative measures to be taken; no clear actions to mitigate the risk factors; the risk factors, themselves, are unknown.
People often say, “I could get hit by a bus tomorrow.” Yes, you could, and yes, that’s a good reason to put your heart and head into something that matters to you every day, but waiting for disease progression is different. See, I know the bus is coming, I just do not know its route; whether it’s running on time. I do know that as my disease progresses I may be subject to a second (or third, fourth) surgery, or more radiation therapy, likely to cause cognitive impairment after the first round beamed a lifetime dose into my brain as part of the standard treatment protocol. With progression, I may expect language impairment, loss of memory, personality changes, inability to read or write… these are all possible symptoms to present if (when) the bus shows up.
So we wait.
We wonder.
We dress our children and stir the oatmeal. We sign homework folders and take out the dog. We manage the logistics of three children and a single driver. We swim against the current of cancer to create a childhood for our kids that resembles normalcy.
But it isn’t.
It isn’t normal.
We sign up our kids for soccer, and another in art class, and we move money from one credit card to another with a lower interest rate, and we scribble back of the envelope calculations every month to make sure we’ve earned enough to pay the bills, always mindful that if my income exceeds the Social Security Administration earnings cap, which is federal poverty level, my disability disbursements will be cut back or suspended, disincentivizing work, even the little I can tolerate on a restricted hours, work-from-home status.
We wake up some days and speak to 130 first year medical students (like I did recently), and we take the main stage of conferences to motivate change in healthcare (like I will next month), and we organize local fundraisers to raise thousands of dollars for brain tumor nonprofit organizations (like a team of us have done for two years), and we put on scrubs and help care for people after strokes, trauma, amputation, while our loved one struggles with their own health at home (like Whitney does each day).
We wake up other days, nauseated, lightheaded, and we wonder if these are early signs of recurrence. Or maybe just a headache.
We wait.
We wonder.
It isn’t normal.
You affirm every day that it is good to be alive. And it is good to have the opportunities to take a terrible circumstance and channel that energy toward good works. You are grateful for supportive employers who let us get away with far too much, and appreciate our work all the same. You acknowledge a terrific community of friends and family–and strangers–who send gift cards in the mail to buy groceries, or cut generous checks that cover a month’s worth of rent, or discreetly hand over folded bills to purchase nutritional supplements for your oldest child who’s at risk for developmental delays, if he doesn’t gain weight and increase calorie consumption, so they tell us.
But you recognize that community support has a limit. And asking for help is humbling, if not humiliating, and you think maybe you should bite the bullet, find a way to return to work full time, lose the benefit status, but make up the earnings in income. But you reflect that people with “normal” life expectancy end up wishing they pursued something more aspirational with their lives, and you do not have normal life expectancy–”it is extremely unlikely”–so why fight symptoms and fatigue in a modified or adaptive work setting, when your time can be filled reminding healthcare that it’s a human practice more than it is a scientific one (as I have tried to do speaking and writing). With all of these thoughts circling your mind, you are grateful you’ve lived for three years with something that kills some people in ten months, but you ask, how can we live three more years this way?
We wait.
We wonder.
I was diagnosed with glioblastoma 38 months ago. Our community has carried us these three years. You gave generously to our family in the Fall of 2016, immediately after diagnosis.
Now we invite you to support our family again.
Whitney and I have lived in the open with blogging, speaking, and often, wearing our hearts on our sleeves. It is in this spirt that I tell you, we have deliberated the publishing of this post for the past several weeks. The problem we face after three years of survivorship is summed up in this article review of a recent National Cancer Institute (NCI) report: “patients with malignant brain tumors accrued health care costs that were 20-times greater than demographically matched control subjects without cancer.”
Despite Whitney’s tireless work with four (yes, four!) jobs (1. inpatient occupational therapist; 2. sub-acute care for the elderly occupational therapist; 3. developmental preschool occupational therapist for children; and 4. part-time yoga instructor), and my part-time work and occasional honoraria for public speaking, plus my disability benefits, we close the monthly budget gap with credit cards. Copay expenses go toward my medications, specialists, and our share, after insurance, of the $115,000 brain surgery that gave me the best chance at longer-term survival.
We must ponder the following questions:
Medications or kids sports?
Copays for the best doctors and mental health professionals for our kids or trips to the zoo and new clothes for school?
The freedom for me to speak at medical conferences, publish articles, and continue work on my book manuscript or exhaust all of my energy reserves working as much as my income cap allows?
Maximize each day of my limited life that remains, whether that is three months, three years, or thirty, or sit at the dining room table with Whitney for another month worrying about bills?
The choices we make are choices of personal goals and values. Whether your values align with ours, influences your decision to help in the way we are asking. If we are not so aligned, that is OK, too, we are still in community.
For those who have helped us: friends, family, siblings, parents, cousins, faith community, former professors, we thank you.
For those curious how you may do more, we have launched a GoFundMe to help our family close the monthly budget gap. If nothing, we have tried our best to be transparent through illness. We thank you for donating toward meeting a $8,000 goal to give our family a little breathing room this Fall.
Glioblastology 