On September 14 of last year, I received the confirmation that I am dying from a genetic type of ALS known as C90rf72.
While ALS has been around since the 1860s, very little is known about the disease, its causes, and how to treat it. In fact, the medical community cannot determine a cause for 90% of people with ALS, who I call ALS survivors. They have located a genetic reason for the remaining 5-10%. My genetic ALS is one of the more aggressive forms and among the most unpredictable in symptoms.
This diagnosis has led to much rumination, especially about my impending death. As a scholar of religion, I have sought to understand various religious systems, their values, beliefs, and perspectives. When I taught at Eckerd College, a small liberal arts school in Florida, one of my 3-week courses was “Religious Approaches to Death.” I remember my freshmen students complaining that they had to visit funeral homes for their field trips, while other classes were able to enjoy the many outdoor features in Saint Petersburg, a gulf coast city famous for, among other things, averaging 361 days of sunshine per year. However, through our readings and trips, we learned how important it is to talk about death, to plan for it, and to unpack its psychological toll.
From this class and my further work, I became academically aware of how uncomfortable people in the United States are about death—and how their religious practices contribute to this discomfort. Since my terminal diagnosis, I’ve been able to draw upon my personal experiences to re-examine my research. Moreover, I’ve found that this diagnosis has become a vehicle to acquire even more ethnographic information about people’s beliefs. People are more willing to discuss their religious beliefs when they know you’re dying; they’re also very keen to learn about your own beliefs.
Through my work as a scholar of religion and my autoethnography, it’s become clear that we suffer from a taxonomic problem when it comes to religion; namely, making the most central question about whether or not we believe in God.
Throughout my life in the United States, the first question I’m asked about religion is: “Do you believe in God?”
I use the word god in the singular, as this is the default manner in which I’m asked the question. My answer often confuses people:
“You are skipping an important question before asking this. I do not care if there are gods or not.”
Whether unconsciously or not, we use the term “religion” as a substitute for “theism” (belief in divinity). This is partly because Christianity, as the dominant religious system in the United States, normalizes a lot of its characteristics. Religion is not the same as “theism,” nor does it require an institutional affiliation. Often, students remark they are “spiritual” and not “religious,” because they think religion means an institutional identification (and they do not want this association). Once they hear about William James’ definition of religion—“the feelings, acts, and experiences of individual men in their solitude, so far as they apprehend themselves to stand in relation to whatever they may consider the divine”—their popular associations with religion begin to break down.
In 1996, I converted to Pedestrianism,* one of the many New Religious Movements (NRM) around the world. As a Pedestrian, my focus is on my conscience and reflecting deeply upon my own sense of right and wrong. In my religion, questions about divinities, heaven and hell, and other external factors distract me from my purpose as I “walk through life.” This stance—and more particularly my response—disturbs the fundamental categories we employ about religion.
When people hear I’m a Pedestrian, they think I haven’t chosen a “real” religion yet. They point to the facts that I have no institution, no doctrine, or dogma to follow. As I worked toward my Master’s degree, I met one of my colleagues and his parents for lunch in Madison, Wisconsin. His parents were living in a Hindu ashram in upstate New York, and wanted to know what I believe. When I told them, his mother explained in a rather condescending manner that I had not yet found my true calling. Reactions like this have become more pronounced since I received my terminal diagnosis.
Some of my friends and family have impressed upon me the need to convert to Christianity, Islam, Judaism, or even Buddhism. Recently, one of my childhood friends asked me to watch Lee Strobel’s “The Case for Christ.” One’s faith is weak if you aren’t able to test it, so I watched the video and sadly found many logical fallacies in his argument. Whether it was attempts on my life during my doctoral fieldwork or my current terminal diagnosis, my faith has certainly been challenged. I feel relatively confident that my religious identification is quite comprehensive and well tested.
The problem is that our categories for religion are deeply flawed. Take for instance the choice for some people to identify as a-theists, which many believe means “no religion.” Notice in this choice of self-identification, atheists decide to use the Abrahamic focus on believing in a god as the basis for their belief system. Belief in a god is not central to Jains, Buddhists, or other religious systems (many of their sub-traditions include belief in gods, but they largely think of them as flawed or not integral to liberation).
If you wish to know a person’s beliefs, please avoid the trappings of the “Do you believe in God”? Ask what they believe, or, perhaps in a more trenchant manner, what values they hold dear. This provides more illumination, in any case, and avoids the false categories we’ve so often assumed were the only ones available.
*Don’t bother to Google Pedestrianism, you won’t find anything. It’s considered dogmatic to write out explanations of Pedestrianism (as it is relevant to each individual). I learned it from another Pedestrian in Wisconsin and I met one in Thailand. At one time there was a website on it, but it was taken down.
