(Adam’s) Narrative Medicine

Tomorrow, Wednesday, April 12, I will pull a chair up to a table in the Medical History room in the IU School of Medicine, Medical Library. I join ten others–nine students and the professor, who are studying Narrative Medicine this semester. Consider this the preamble. In this post I rehearse my talking points, and I emphasize the importance of storytelling in medicine

Many of you following my journey recognize that I have been sharing my story for several months by way of social media–Facebook Live, this blog, monthly twitter chats (#BTSM), speaking in community settings, in academic venues–Marian University College of Osteopathic Medicine; this upcoming public lecture hosted by IUPUI Religious Studies Department on April 19, and perhaps more important than each of these are my regular coffee conversations with close friends and former colleagues, sometimes one-on-one, sometimes in groups.

Here are two theses, hypotheses maybe, which have always been there, just beneath the surface of my areas of interest, motivating continued study.

  1. Story telling is a long-honored and integral piece of our human experience. The content that comprises our stories vary widely by cultural traditions–and with respect to our friends who study myths and tropes, perhaps the content across cultures is not tremendously different, after all (consider flood and creation stories traced easily to many cultures to emerge from the Mesopotamia), but the point I wish to make here is more broad. The act of sharing our experiences, framing our narratives, and contributing to an oral tradition is a defining feature of our collective humanity, at large, and certainly features of our identification with a community or, more abstractly, a peoplehood. But this stands against the following, second hypothesis.
  2. We seek an objective worldview, so far as we think it is possible to achieve. The Western academic tradition employs the language of mathematics to describe the world on purely objective terms, purportedly void of subjective interpretation; physicists seek, through reductionism, the outlook that meaningful explanations are sought after only at the bottom-most level of the explanatory target: the level of fundamentality. That at some most primitive level the discrimination of distinct objects dissolves and what remains are, well, not even objects at all, but a collection of attributes, charge, mass, spin, and so on that stand in relation to one another.

These theses stand in seemingly stark contrast to one another: on the one hand, the anecdotal, narrative, story telling accounts, passed from family to family, friend to friend, peer to peer; multigenerational. These stories contribute the to a sense of community and the reinforcement of values indicative of exemplars borrowed from the community who now live on as the subjects of their celebrated narratives.

On the other hand, the objective, quantified worldview has little concern for the subjective reinforcement of values drawn from a community of origin, and instead is concerned chiefly with predicting outcomes from a set of initial conditions and governing principles. Given reductionism, determinism, and fundamentality, the evidence presented to us by contemporary physical theories are, by definition, stripped of subjective identity.

Where does the physician find herself? Her patients, flesh and blood; her recording of their symptoms locked behind a protective wall erected from the scaffolding called HIPAA. Our office visits call out for personal connection. Our medical record keeping warns against privacy breaches.

Is this the space–the gray area between the practice and the policy, that we find narrative medicine? Between the stories and the statistics? The physicians and the patients. Medical history gathering is the pathway through which the two may become connected. Especially for the chronically ill, the cancer survivor, the terminally diagnosed, that more so than in any other space physicians and patients are presented with the opportunity to recapture the first of my two hypotheses. That storytelling is attachment to a community, through that which medical school may drive a wedge; may serve to detach physicians from their patients; detach specialists from the bodies on which they specialize. The community can be rebuilt when we seek to remove the barriers the lead to detachment. When healthcare is viewed not as physicians and patients–two separate classes, but as members of a medical community, where medical professionals are accountable for the care they provide, and patients are accountable for investing in their health and wellbeing by taking seriously the relationship with their caregivers.

Like great storytelling, the hero of our narratives, the reinforcement of personal values we experience when seeking solace in our favorite stories–what Rita Charon calls the “sense of story,” might we find the strength to craft our own narrative, featuring ourselves at the center, and refusing to settle for medical professionals who are not compelled to listen closely while we tell our stories.

Wednesday, April 12, I will tell my story again, for the n’th time, but for the first time. It will be told to a room of strangers, yet, when our time together is over, the influence we have over each other will linger. This is only possible when we recognize ourselves in others, when we eliminate barriers erected in the name of responsible detachment to practice objective science and medicine, and we do this through the art of storytelling.

 

What Should Public-Facing Science Communication (#scicomm) of Cancer Research Look Like?

In this post, the first of two taking special interest in science communication (hashtag #scicomm), I offer my argument for the important role science communication #scicomm plays in sparking public interest in scientific inquiry, and closer to home, I make a case that #scicomm has a unique and vital role to play in educating our patient population to reinforce the notion of informed consent. A truly informed patient, I argue, experiences improved quality and prolonged length of life, not because they are science communicators, but beause informed patients make better decisions with respect to benefits and risks of treatment. The onus, then, is on science communicators to consider what their role may be in describing origin theories of disease, e.g. cancer, in a way that empowers the public.IMG_0210

 

The disease of cancer is prevalent: perhaps not surprisingly, given our near universal experience of having been touched by cancer in some way, through the diagnosis of a loved one, grandmother, aunt, brother, cousin, and so on, or struggling with our own diagnosis, so it is that cancer is among the leading causes of death in the United States. Identifying preventable causes of the disease largely drives decades-long improvement in patient mortality statistics. The identification of preventable causes of cancer is of great benefit to public health, as it drives legislative action to protect a citizenry from increased risks while acting as responsible stewards of allocated healthcare dollars, taking on board the well-supported hypothesis that prevention is less costly than treatment. Beyond prevention, we may also wonder what researchers know of the nature of the disease itself. Knowing that limiting exposure to certain environmental carcinogens, for example, allows researchers to know something of cancer by way of preventable triggers, but a curious researcher, as we hope all are, should want to know something of cancer qua cancer, as we might employ the phrase in philosophy. Knowledge of cancer in virtue of its causes fails to penetrate deeply into the realm of inquiry, the space where our researchers and theoreticians operate.

 

Here is a story to help us. My oldest son may ask why the moon looks like a big circle one night but can look like only a sliver other times? I would not be incorrect to tell him it is because different portions of the moon are illuminated at different times, but this response is not very satisfying. Anyone with kids knows the natural follow-up question is, why? Why are different parts of the moon lit at different times? Now I may respond that the moon itself does not shine, but the light of the sun illuminates the moon. The illuminated portion of the moon appears a certain shape to an observer on earth given the relative positions of the sun and moon to earth. My son will likely lose track of the conversation at some point. If he is interested enough, he’s had a snack recently, and the television is off, he may entertain me by paying attention while I build a model with a flashlight, his toys, and a ball to represent the lunar phases, but otherwise, he moves on and asks me the next night, why does the moon look like a big circle tonight?

 

Let’s shift back to our topic. Why did my friend get cancer? Your friend got cancer because he smoked. While not technically incorrect, this answer is not very satisfying. A natural follow-up is to ask why? Why did smoking cause my friend to develop cancer? Now we are beginning to seek answers to the types of questions that motivate our researchers.

These stories help lay folk like you and me, “the public” or “the nonspecialist,” those who have taken an interest in scientific questions, but who lack the requisite training, it helps us to engage more closely with academic researchers and their chief means of currency, the academic journal article. The answers provided to nonspecialists, like those I offer to my son, often are either unsatisfying given their nonspecificity and simplicity, or the responses are far too complex to be meaningful, and so nonspecialists are not allowed a seat at the table; no voice in the debate. Hence, we need models with flashlights, toys, and a ball. It is the responsibility of science communicators to build these models and to help nonspecialists along. Einstein reported that his earliest interest in seeking to understand the deep mysteries of the natural world was sparked as a child when he saw the needles of his father’s compass move seemingly autonomously. What deep mysterious forces are moving these needles?

Like his father’s compass did for Einstein is what I hope my conversations do for my three boys: spark their interest in understanding the natural world more deeply—whether that interest leads them to science, literature, theater, culinary arts, politics, machinery, craft, or engineering, there is not a single field or passion worth pursuing that does not benefit from a drive for deeper understanding of its “forces” that appear to the rest of us only as mysterious.

The burden on science communicators is great and the responsibility is one to take seriously because the models built by science communicators to help lay folks grasp deep concepts of the natural world by employing straightforward language, familiar concepts, and model building is not only an opportunity to help the public understand the power and priority of continuing to fund the sciences, but the public is also impacted in a deeply personal way as I may better come to know the hypothesized biological causes responsible for the development of my brain cancer, and I may find myself more genuinely invested in taking accountability for pursuing my treatment regimen if I better understand the mechanism of action by which my chemotherapy kills dividing cells by attacking their DNA, inhibiting mitosis (cell division), triggering cell death, or both.

Cancer mortality is declining, yes in some part to improved treatments, but largely mortality is lessened by identifying preventable causes of the disease. Prevention is good, going forward, but it is of little benefit to the 1.6 million Americans who received a cancer diagnoses in 2016. Effective treatment rests on a comprehensive and empirically tested theory of cancer’s origin. Patients and their caregivers are right to expect safe and accessible treatment that seeks to maintain or improve quality of life and prolong a patient’s life to the extent that is possible, while seeking to protect the first criteria. That is, my personal attitude toward treatment is that beyond some tolerable threshold, prolonging a patient’s life should not irrevocably violate the quality of her life. This balance is subjective, arbitrary, and in every case that time allows, the topic is best discussed openly with friends, loved ones, medical teams, and other interested parties. No treatment allows a patient to  evade death, but many available treatment options prohibit a patient’s wish to die well.

The private and often taboo topics suggested in the final sentences of the previous paragraph are hidden beneath a guise that medical researchers and clinicians invoke with the phrase, “informed consent”: that patients or their elected healthcare representatives, after having been made fully aware of risks and side effects associated with a given treatment, may elect to receive or decline a therapy with their consent, even at great risk to their quality and quantity of life, up to and including hastened death. It is the patient’s right, it is supposed, their autonomy, that a patient may choose to accept or deny treatment on the basis that the patient has been fully informed.

 

What I have said so far ties together researchers, clinicians, and patients in the following way: researchers benefit from intimate knowledge of pathology, clinicians tie their treatment recommendations to their understanding of the nature of the disease, and patients or their representatives consent to treatment on the condition that they be fully informed of the risks. Each of these parties are bound by their reliance on some working knowledge of the disease they either study, treat, or from which they suffer. Medical researchers and clinicians are licensed for their work after years of formal education, lab apprenticeship, or residency. The knowledge they have of their specialty warrants their expert status to make recommendations through research proposals, drug development, or clinical protocols. Patients consent to their recommendations on the presupposition that regulatory agencies and governing bodies maintain acceptable criteria of qualification and credentialing to place an acceptable degree of trust in these professionals.

A point I have made in public lecture and discourse is the following: medical professionals demonstrate their specialty knowledge and tacitly earn patient trust by trailing their names with such designations as MD, PhD, DO, RN, LPN, MSc, only to name a few, and with my asking for forgiveness for the many professionals whose abbreviated credentials do not appear on my list—their absence a sign of my ignorance, not your unimportance. I have received a craniotomy, eight MRIs, 30 sessions of proton beam radiotherapy, two CTs, tens of IVs, nearly 100 individual doses of chemotherapy, countless blood draws, routine vitals, and all I am is “state your name and date of birth.” When do I earn my CPT, certified patient, credential? I don’t, because I just made it up, and further because it flies in the face of the field of contemporary professional medicine whose aim is to treat patients and discharge them, not to celebrate them.

Should a patient be certified? Of course not, I am being rather absurd. Or am I? There are as many varieties of patients as there are diseses, and I am a patient, rather, I am a person who is driven deeply by inquiry to uncover the mysteries of the natural world. I stock my bookshelf full of medical school textbooks and popular medical science novels to intimately learn my disease. On March 29, 2017, I delivered two back-to-back lectures at Marian University College of Osteopathic Medicine (MU-COM) to mostly first and some third year medical students. Between lectures I was asked to make a slight modification from the first to second lecture by describing in slightly more technical details the characteristics of my type of brain cancer, glioblastoma. I mention this because while some may struggle to quickly find the words to describe the biological underpinnings of their disease, I have the opposite problem, that I must remind myself to trim back content before delivering an impromptu lecture on IDH mutations in high-grade glioma.

While I have not put in years of work as those serving on my medical team, and while I do not think that I set a reasonable baseline for what is or ought to be expected from patients, I do think that my hard work learning the competing theories of cancer’s origin enables me to be more engaged in my personal healthcare, and I am happy when my oncologist rewards my hard work by allowing our appointments to stretch to an hour, sometimes 90 minutes, as we wander off in conversation about theories of cancer’s origin or he reports about his experience at the recent conference he attended. “Precision Medicine” is the buzzword in cancer treatment these days, therapy that is made precise by targeting a patient’s cancer’s molecular markers, but this ability to identify my desire to share what I have learned, and my oncologist’s willingness to engage in this discussion, is sort of old school precision medicine. It is therapy that is targeted to my needs. It celebrates the informed patient.

I do set a bar for an informed patient. I ask my readers to consider the gulf between my hard earned knowledge of my disease, and the average knowledge of a patient without desire, training, means, or ability, given socioeconomics, education, interests, cognitive impairment, or treatment side effect profile. If you have had a conversation with me about cancer or heard a talk I have delivered within the past several weeks, you know that I emphasize that patients learn to tell their own stories to identify what is most important to them to protect as integral pieces of their quality of life and that medical professionals learn story telling to better inform patients on the patient’s terms, not the physician’s.

 

Public-facing #scicomm is not (only) about sharpening the scientist’s skills as expert communicator; it is not (only) about proving the worth of science writ large, or a specific domain of research within the broader sciences, it is not (only) to help the broad public constituency rally to disallow the disastrous cuts to science funding and frightening censure of science-driven federal administrations such as the EPA; no, the aims of #scicomm are to spark interest from our children, to empower people to seek deep mysteries of the natural world through embracing inquiry; most importantly, through my lens, #scicomm enables patients to become better informed about the nature of their diseases and mechanisms of their available therapies. In so doing, patients improve the quality and prolong the length of their lives. Next, they begin framing their own narratives to lift up the importance of science communication and motivate others to embrace inquiry and uncover the deep mysteries of the natural world.

Respectfully yours, Adam, CPT

[Note: If you are interested in hearing Adam deliver a public lecture on these themes and others, please join him for a public lecture hosted by the Religious Studies Department of IUPUI on the evening of April 19, 2017, 4:00pm. Light refreshments to be served beginning at 4:00pm. Lecture from 4:30pm-5:30pm. Topic: Well Wishes and Folks Theology: Religion in Interpreting Disease. The event to be held in room 409 of the IUPUI Campus Center located at 420 University Boulevard Indianapolis, IN 46202. For more information and to RSVP please click to open the Facebook event page.]

A Walk in My Shoes

This is a first-person experience story of living with three young children, a dedicated, hard-working wife, and, yes, brain cancer. My objective is to remind us to not discount patients’ chronic illness on the grounds that you cannot “see” the symptoms.

A parenting instinct activated upon the first steps taken by your first child heightens a sixth-sense ability to recognize sharp corners, protruding from dining tables, low counters, wooden chairs with arms, open cabinets, and playground equipment, to name a few of such hazards. With little thought, no break in conversation, with the finesse of a no-look pass into the paint, a parent will reach down to place a hand around the bottom of a protruding corner as her child stumbles by and ricochets off the safeguarding hand–rather than, say, ricocheting off the sharp corner. My family recently moved to a new home and our kitchen counter appears custom-built to the median height of 36-48 month old children. My corner-sense was tingling! Contusions avoided.

These days I recognize myself doing something else to safeguard these corners: no longer do I protect the bottom of the sharp edge to keep little skulls safe, I cup the entire corner to keep big skulls safe, too. See, I am prone to seizures, and I have before struck a kitchen table while experiencing a seizure.

Whitney and Adam, Post-seizure run-in with the dining table.

My seizures are well-controlled with Keppra and Vimpat, the peanut butter and jelly of the epileptic neuropharmacology space. Though as I discovered on the morning of March 6, after delivering a public lecture to 250+ attendees on March 5, followed by dinner with close friends, my fatigue and anxiety is pretty well correlated to seizure incidence. On the meds my unconscious convulsions are a distant memory from inpatient post-surgery recovery (and that one time at my folks’ with the table), but light-headedness, dizzy spells, and left-leg weakness are the trademark signs that I stretched myself too thin. I am experiencing them near daily this week.

The following is why. March 5 I delivered that public talk, March 13 I sat for a 90 minute interview rehearsing my story and discussing end of life planning for a palliative care website (IKS.com; here is my blog post about that experience), March 29 I delivered two back to back lectures at Marian University. In April our family moved homes, during the rest of the month I delivered a lecture with an IU School of Medicine narrative medicine course, and I delivered a lecture sponsored by the IUPUI Religious Studies department. I prepared a proposal for an interdisciplinary conference (Communication Medicine and Ethics) that was accepted; I will present in June. This weekend I am scheduled to visit Washington to conduct meetings with Indiana’s elected representatives and senators to advocate for cancer research funding.

This is all to say, I am busy. And I love it. Writing and speaking are therapeutic, I teach medical professionals to consider more deeply patient interactions, and I advocate on behalf of fellow patients and survivors. Advocates like me are preparing a better road for you if you face chronic illness. Please reach out and invite me to address your patients, faculty, medical professionals, clinicians, nurses, chaplains, and so forth. It is my passion, and I am good at it.

Back to the topic: I am pretty worn out these days. How am I feeling? Not great. I’m safeguarding the top and bottom of each corner I pass for fear a mild (or major) seizure incident will send me, head first, into the sharp edge. I require a cane for balance, and I “furniture surf” through my home to keep from losing balance.

The following are symptoms I experience; in some cases, I offer actions you can try at home to emulate my symptoms–clear the area of sharp corners!

  • Headaches, local: these are localized to primarily the area of my surgery (craniotomy). There is a divet and line tracing the incision and partial skull removal where the bone is fusing. Consider a broken arm and dull aches even after cast removal. Examine scars on your body with your fingertips–broken bones, surgical scars, places where a laceration required stitches, and so on. Let your sensitive finger tips distinguish these areas from unblemished tissue. Now imagine these vulnerable areas are on your head. My “head divet” aches.
  • Headaches, global: I experience near-daily general headaches. These daily headaches are often tension or compression headaches. After resection of a 71mm mass and edema my healthy brain tissue is reclaiming available space in my skull. My parietal lobe healthy tissue is moving back toward the occipital lobe. Squeeze a few inches of muscle tissue in your arms or legs and consider how moving tissue feels with respect to connective tissue and your skeletal system. Tissue is shifting inside my head.
  • Motor deficits: fatigue exaggerates my motor deficits, and chemo makes me very fatigued. Think about your last leg day at the gym. Jello legs? My left leg feels like this nearly all the time, and my right leg bears the compensatory burden. My left hand is slow, and anything held for long periods of time in my left hand is almost always tilted, spilled, or dropped. (“Oh, Lefty,” my wife and I will say to ward off frustration with humor.) My left-hand fingers and thumb are lazy while I type out texts, tweets, and emails.
  • Sensory deficits: communication between nerves and my sensory cortex is damaged. I often feel sensations on my left leg, but I am unable to locate where or what these sensations are without visual input. My leg and foot tingles and feels numb. 
  • Proprioceptive difficulties: related to sensory deficits, I struggle to locate my left side in space. I often bump into people and things given a spatial and sensory left side “blind spot.” Try this, find a step, stand on the step and let your left leg suspended above the floor. Close your eyes and move your foot and leg in a big circle, hovering over the ground, then stop and try to tap the ground, no looking, this is how each step with my left foot feels. Or close your left eye, keep your right eye open, and make an obstacle course in your home around tables and chairs.
  • Light-headedness: during my most fatigued days I feel like someone has taped a helium balloon to each side of my head, and the feeling–though not the visual experience, is wayward and wobbly, swaying back and forth.

It is easy to neglect the symptoms of chronic illness when we do not “see” them. It is easy to think of me doing well, and think, Adam is so active, he is in great shape. Do not think that in the absence of oxygen tanks and chemo infusions that I must be doing OK. Do not think that because I am able to speak publicly, to accompany my family on errands, or because I have a date night with my wife every few weeks that others are granted license to state how I am feeling. It is almost always better to ask me. “How are you?” Doesn’t feel quite right, but, “how are you feeling today,” is good.

My talks and other activities are not done in the absence of symptoms but despite them.

Please don’t mistake this honest (and at times assertive) post as a call for acknowledgment or recognition, but as a reminder that few of us are granted access into the inner lives of our friends, family, and acquaintances, but inaccessibility does not warrant assumptions.

Let us seek to walk in each other’s shoes before critiquing their fashion sense.

New Resource for Advanced Illness; My Contribution

Jim Rosenberg is a nice guy and a good conversationalist. Jim is not one of these shoot the shit, “how’s the weather?” kind of conversationalists, but more of the Quaker, “how is it with your soul” types. Jim is the conversationalist who actively listens. He is not waiting for his to turn to speak. Rather, he waits to rebound spoken words back toward the speaker in such a way that helps you realize there is something hidden beneath your spoken words that you didn’t realize was there, lying prone beneath the noise, when you spoke them. Jim teaches you about yourself while he interviews you. Jim is appreciative of your time, but it’s often the partner on the other end of the phone (or Skype video call) that most values the experience.

In short, it is a pleasure to speak with Jim, and that pleasure was mine earlier this month (March 13, 2017), when I interviewed with Jim for his innovative resource targeting patients and caregivers of folks facing advanced illness and the end-of-life. Jim’s resource is called the I Know Something Project (IKSproject.com), and though in its earliest stages of development, the powerful impact of a mature and fully fleshed out product is not difficult to imagine. Jim and his late wife Amy radiate love. If you wonder how it is I use ‘late-wife’ and ‘radiate’ (in the present tense), in the same sentence, you need only connect with Jim to see Amy’s light and their love shine through Jim’s soft eyes and focused gaze.

 

Amy’s passing left both Jim and Amy feeling overwhelmed, cast from the life they knew and navigating seemingly uncharted waters, yet as Jim observes, everyone faces death, why should there be such a void of helpful content? Enter the I Know Something Project:

The “I Know Something” (IKS) community captures short, personal video stories from people who have faced the hard moments in life that we don’t talk about every day. It’s about giving voice to every one of us and all we know. We then add links and reflection exercises to the stories to make it easier for everyone to think about their unique situations and specific needs. So in our own time, at our own pace, and in our own way, we can figure out answers surrounded by others who have been there before (“About this Project.” I Know Something Project. https://iksproject.com/about/).

That Monday afternoon in March, Jim and I talked and laughed for over two hours while I rehearsed my life over the past ten months, battling terminal brain cancer. My first edited “story,” titled “Choosing Quality of Life Over Treatment (link)” is now available on the IKS website. Those who know me, you’ll recognize my familiar, humor-driven, yet thoughtful tone, and I hope now you’ll know something about the person on the other side of the camera, Jim, a nice guy, and a good conversationalist.

 

Please pass the IKS project on to others who may find the resource of great value, and check back for new stories to be added all the time.

If you would like to share your story, let Jim know through the site. You can also reach him to talk about any question at jim@iksproject.com.

Direct link to my edited story: https://iksproject.com/choosing-quality-of-life-over-treatment/

No Escape from Death; Might as Well Embrace It

I think about death often. Probably two or three times each week, and once each week I offer death a really thoughtful hour or so of my attention and consideration. I am a smart guy, and I am well studied in the works of predecessor smart people who were thoughtful enough to offer death their attention and consideration. Many of these people recorded their thoughts in memoirs, blog posts, columns in the weekly standards, or by some other written medium that is available to us to learn from their considerations of death. In this post I lend some of the lessons I gained through my thoughtful considerations of death.

You may be inclined to think, “Adam discusses death often; ought we be concerned?” You ought not. It is my consideration of death and of palliative care that the terminally ill have a responsibility to bring discussions of death out of the shadow of taboo and into the lights of conversational norms. I intend to live for many more years, but shifting norms takes time, so consider this a long-term goal.

I started offering honest narrative accounts of my personal walk with brain cancer while still in the hospital. My support network is large and diverse. My background and education is likewise. My dad, a career pastor, like his dad, and his two older brothers, taught me through observation that people are always getting sick and dying. There is something unsurprising to me about death–certainly unfortunate, but unsurprising.

The organization of the institutional church is not dissimilar from the organization of the private sector: as a person increases in position, from youth pastor, to associate, to senior pastor, with a higher position on the institutional ladder comes increased responsibilities. The senior pastor is equipped to deliver the weekly sermon to a corporate body of two or three hundred because she has served her time as an associate making hospital calls to the sick and dying. The private conversations in an inpatient hospital room equip the junior pastor with the lessons to take to a broader audience. You learn, or at least are granted insight into, the values that matter, when someone dies while you hold their hand and are bonded in prayer. Like a trades-person’s apprenticeship, a medical residency, or a graduate teaching assistantship, the role of a senior leader, as a mentor once told me, is to let your up and coming leaders make mistakes but step in before the person becomes a liability.

People getting sick and dying is weaved into my background, but, I am careful not to claim that I have learned the experience of what a person feels when ministering to the sick and dying, I put plainly that I only know of this experience by watching my dad put on his clergy name tag, grab his Bible, and head out the door for a “busy day of visitations.”

 

Here is one experience I do know. I shook the hand of a doctor assigned to my case. He introduced himself, asked me to state my diagnosis, and quickly he said, “You know you’re going to die from this, don’t you?” He continued, “I think it’s important for patients like you to know we are going to treat you, but not cure you. The long-term survival for patients with your diagnosis is 0%. We just don’t have them.”

 

Here are two more experiences I would like to report to you now.

First, Sunday, March 5, 2016, I paced the stage of a multi-purpose community room, an expansion added to the church where my dad is the senior pastor. I delivered an hour-long narrative account of my walk with brain cancer. Following the talk several people greeted me and said, “Adam, I really enjoyed your presentation.” Inevitably, many of these people quickly back pedaled for fear that by some stroke of schadenfreude their enjoyment of my discussion of my terminal illness violates a social norm that we are to avoid interest and enjoyment in discussions of death, or to admit that we might gain entertainment while being moved under the dark cloud of an incurable disease.

This simply is not the case. My decision to present my story is not a cosmic “gotcha” joke.

Here is my story, it is sad, and moving.

Psyche! You enjoyed it, you jerk!

I tell my story because we are mortal. We are vulnerable. We get sick and die. There is no escaping this basic truism of our pinpoint existence in the multi-billion-year universal journey of an expanding cosmos. We would do better to embrace it. To discuss it. To enjoy the discussion of our demise. A palliative care doctor told us during a discussion of death and dying geared toward persons with brain cancer, “we plan for retirement, should we not also plan for own death?”

How terrible it must be to be the spouse, close kin, power of attorney, or healthcare representative of a person and patient whom never broached the subject of their own certain death? To take extreme measures? To continue hydration and nutrition? To intubate, vent, crack open the ribs and manually massage a stopped heart.

The inability to embrace our certain death places a burden on our loved ones for which we will not be responsive to help guide the conversation. I think of no insult greater that I may commit against my wife than to put her in the position of wondering, “What would Adam want in this situation?” How tortured she would be? How tortured her relationship with family and friends must be when differing opinions would be settled by everyone’s speculation about what Adam would want.

 

Second experience, and less of a definite experience, and more of a general attitude directed toward me and my family, is the speculative folk theology of the attitude of God toward the faithful flock. Here are a few claims that you have no doubt heard, and perhaps a few you have spoken yourself, and be not afraid, shamed, or judged by my reporting of these claims. Instead, I invite you with open arms and a warm smile to consider with me the implications of our best-intended statements about how you interpret God’s wishes toward the sick and dying.

“God will not put more on you than you can handle.”

“God does not throw curve balls.”

“God has a plan for you.”

“It is God’s will.”

What implications might we draw from this portrait of a supreme deity? Ultimately, each of these statements imply that God has a hand either in putting us through the gamut of suffering and death, or that God may lift our suffering at any moment, but decides not to.

As we say in philosophy, I only offer a rough sketch of these theodicies–explanations for evil and suffering in the world. I have only glossed these complicated views. But to that complaint, I have this to say, these claims are rarely spoken by a thoroughly trained theologian who builds her claims on a foundation of systematic theology. Instead, “God does not put more on you than you can handle,” is spoken by your friends, family, next door neighbors, and in greeting cards from Hallmark we sign our names to and drop in the mail.

The duty, the responsibility of the ill, is to interpret these statements as well wishes and sympathetic support during a difficult time. The duty of the wisher is to extend greetings with the same reverence that death demands: something so big that not one of us will escape it.

Better to embrace it.

Inside My Head, Now on YouTube

On May 13, 2016, Adam was ordered to a “stat” MRI by his primary care provider. The scan revealed a 71mm primary brain tumor that would be diagnosed as glioblastoma multiforme (GBM), a deadly and aggressive brain cancer. In this talk Adam shares his journey (so far) with GBM, and he highlights lessons that are applicable to everyone.

Please click to view the one hour talk now available on YouTube.

Finding Purpose between Power and Helplessness

I write this post a day after delivering a public talk, Inside My Head: A Story of My Personal Walk with Brain Cancer, and a day before my next eight-week MRI scan. In this post I report the strange emotional dichotomy, recognizing my power of positive impact through public speaking while suffering under the helplessness of the course of my disease.

“In two days I will be changing into hospital socks and oversized scrub pants. I consider the ongoing depersonalization of the American healthcare patient: name, date of birth, diagnosis c71.9, malignant neoplasm of brain, unspecified; one-size-fits-all standard of care, cinching tight the drawstrings on the waistband of my comically-too-big scrubs while I shuffle to the MRI bed.” I delivered these words Sunday afternoon, March 5, to a packed house of 250 or more friends, family, and colleagues gathered in support of me, my wife and young children, and to make a dent in median overall survival by raising money and awareness for brain cancer research.

It is the day after my talk. It is the day before my next eight-week MRI scan to monitor disease progression. This morning I suffered a minor “event” or “episode” or something. I lost my footing in the living room, grasping for a door frame to prop myself up. I tapped out two more emails on my iPhone when seeking respite on the couch following my “something.” I continue my “work”: seeking venues to deliver talks, spread awareness, and raise funds to support my young family after I am long past useful.

I returned home last night following an unmatched display of support from  my community. I hugged my older boys for bed. I rocked my youngest for sleep while participating in the monthly #BTSM chat. This month’s topic: survivor guilt. Other persons with with brain tumors, many living with the disease longer than I have, poured out the contents of their hearts in 140-character confessions, searching for purpose, meaning, and self-worth in contrast to the ever-lengthening list of old friends, now deceased. The longer you walk this road with others, the older friends are lost and new ones join in the march. What lessons live on from the last generation to lend to the newly diagnosed?

 

My youngest son received his 18-month check-up this morning. He is a dot on a curve representing a percentile. All lines trend up. At a point in all of our lives we reach an apex and become a downward trending dot.

 

My wife returns home with our little guy in tow She notices me hunched over my phone on the couch, seeking respite yet tapping away.

“You have to rest!”

There is no resting for me these days, only sleeping when tired.

“You have to take it easy.”

I tap on my phone to pitch my next talk, to schedule a meeting to contribute to a caregiver- and patient-facing website offering resources to people in the path of disease, to connect with the tweet-savvy to grow my network, to share my blog, to gain more followers, to carry out a mission beset by chemotherapy, fatigue, and nausea. To find self worth in my own personal quest toward a meaningful life.

“Sent from my iPhone” isn’t just a status, or business, or to indicate traveling correspondence, but to assert, “I may be nauseated, but I’m not dead”; “I am ‘working from home’ under a blanket, tapping away at the lessons to lend to the next generation.

 

It is the day after my talk, the day before my next scan. Name, date of birth, scrub pant size? The same system I criticize, I trust myself to its care. I cry over this journal today because I am afraid; terrified, really. Do not mistake my comfort and articulation when discussion my morbidity or mortality for hope that I may evade the advancing line. Acceptance does not ameliorate fear; it embraces fear. If one-size-fits-all standard of care depersonalizes the American healthcare patient, we must recapture our personhood. What is more personal; what is more human, than realizing our own mortality. “The path through fear is familiarity,” I spoke yesterday.

The day after my talk, the day before my scan. I am seeking purpose somewhere between the power of my influence and helplessness of disease progression. Between power and helplessness, a person’s place in the world, surviving.