(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.

 

I am Not Political. I am Compassionate. A Take on Policy from a Disabled Person

I am disabled, officially. By the definition put forward by a private disability insurer and the adjudication rendered by the Social Security Administration, I am disabled. It is worth noting that my disability status is temporary. I am at present monitored on a three-year cycle to maintain my disability standing. Of course, three-year survival expectancy for the disease, which has garnered my disability approval, is around 5%, when reviewers come checking to see if I am still disabled in three years, there is a chance I will be deceased. Certain further “benefits” available to the “permanently” disabled, including discharge of public student loan debt and the ability to count my monthly disability payments as “income,” are withheld from my family given my “temporary” status. Again, temporary until death, the ultimate “permanent disability.”

 

You might want to respond that disability should not excuse me of debt that I entered into under sound mind and body. Repayment is my obligation. This would make sense were it not the case that if I return to work and earn income to pay toward my publicly held debt I risk loss of benefits status, in which case, followed to logical conclusions, your argument against my debt discharge is an argument against disability status, generally.

 

I have more on this. I become eligible for Medicare 24 months after date of disability. While you tune into nightly news coverage of the ACA, AHCA, repeal and replace debate, know that consequences are not only reserved for a theoretical abstraction, 24 million without coverage in a decade, but there are very real impacts to my healthcare coverage. If you need to put a face to those facing loss of coverage, [insert my face here]. I now have a pre-existing condition, so rolling back protections make me vulnerable to loss of coverage, if I were to shop the market. If you do not like the idea of government mandated, regulated, or provided healthcare, do you sincerely trust my life expectancy to the whims of the private sector boardroom?

 

My debt to income ratio is terrible because my disability payments do not “count” as income, given my temporary status; hence, Whitney and I cannot qualify for a mortgage. We are moving from my parents’ home to a rental next week. In under a year I have lost the ability to drive, lost the ability to work, we sold our condo to accommodate for our loss of income and my physical limitations navigating 16-steps to our second floor home. We have burdened my parents with moving our family of five into their single-family home. Thanks to the very generous donations of friends, family, and colleagues, we are in a position to manage our monthly budget, but we cannot be qualified for a mortgage and must pay rent, which is a monthly expense two hundred dollars more than mortgaging the same home. This is the first of many losses of opportunity because of our lower income. We do not have the money to earn home equity, and so the cycle of status quo continues.

 

My disability payments are just over half of salary I lost at time of disability, which is a big “pay cut,” if we call it that, but again, a hidden cost here is the inability to earn more; this inability manifests itself in two forms: first, I was on a fast-track at my previous employer to promote into higher positions and with them, increased compensation. I am not able to work those positions at that employer because of physical limitations and because it would disqualify my benefits status. Hence, my disability is not solely loss of salary, but loss of future earnings potential. Second, if I return to work at an even part-time status I risk loss of benefits, and if I earn more than federal poverty line my publicly held debt will not be discharged, even after three years. You know, if I live that long.

 

I benefit from government assistance, which I receive in monthly payments derived from an algorithm taking as input variables my years of employment, salary at time of disability, number of dependents, and amount I have paid into Federal Social Security programs during my time of employment. When you pay your taxes, you are, albeit indirectly and rather tenuously, also paying for the out of pocket expenses to which my family is accountable for securing my medication, office visits, imaging procedures to monitor disease progression, and so on.

 

Let’s put it this way, I am paid in disability payments from the government so that I may pay a private insurer to help pay for the drugs manufactured by a private company, who also pays lobbyists to influence the government to vote this way or that.

 

I am not political. I am compassionate. I am kind. I think love wins, I think women possess the right to choose, and this right should not be overturned. I think that the pursuit of life, liberty, and happiness, can only be realized if it is presupposed that happiness is contingent on protection of personal health and wellbeing. The mistake of the last thirty, forty, fifty years is to politicize those things such that my base line compassion is now somehow taken as a political stance.

 

I think I am entitled to the best treatment options, not because I am white and middle class and because I used to have a good job, before I didn’t, but because who doesn’t want to chip in a few bucks to help out a family like mine—and if you say that should not be legislated, I say, well, it should be, because there are a few assholes out there who answer my rhetorical question with, “nah, I’d rather not.” To that group of folks I say, join me at home when you open a medical bill for a surgery that costs $115,000, and if you don’t want to join me there, crying tears of relief that I have coverage, then join my wife at my graveside. At least she won’t have to pay back my student loans.