Culture as Delusion

THe backstory

In 2020, I noticed multi-colored strings coming out of my skin. And they hurt like hell. When doctors suggested it was 'delusion,' a quick internet search led me to the debates about Morgellons Disease, a highly controversial condition wherein microscopic, subcutaneous debris cause patients significant pain and discomfort. This high-stakes controversy seems to came down to whether the patients' sensations are caused by either a "real" physical condition (whether the result of Lyme's disease, fungal infections, agro-bacteria, nano-tech, etc.--all of which have been suggested by well-renowned medical practitioners/researchers and lay people alike) or by the seemingly less "material" phenomena of "the mind" (e.g., psychological delusions, fueled by the so-called "mass hysteria" that festers in online patient forums).

Convinced that the debate itself was the dangerous product of the material/ideal and mind/body dualities, I turned to my anthropological training and tried to investigate each perspective on its own terms and in relation to what I was documenting in my daily experiences (both on my body and in my environment). Rather than searching for the source of "delusion" in any individual "mind" (whether that of the often-desperate patients or the often-dismissive doctors), I tried to embrace an approach I've been calling "culture AS delusion." Drawn from educational anthropology (and a very novice exploration of quantum mechanics), this approach helps us ask:

What are the conditions in which a rapidly-increasing group of patients are perceiving (and documenting) foreign material moving underneath of and out of their skin, while the majority of the medical community continues to maintain that such materials are the products of "delusion" ? What do we miss when we fixate on trying to distinguish what is "real" from what is "delusional," particularly when there is increasing evidence that reality itself is what some physicians and philosophers call "an illusion"? And what can we learn by considering that culture itself (or the taken-for-granted ways we've learned to navigate the world) is the source of our collective "delusions" (including those we've learned to call "Truth")?

This website documents what I found , as well as all the questions that arose along the way.

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DRAFTED TEXT TO EDIT: In 2020, I was still seeking out doctors who might help me figure out why there were absurdly weird objects coming out of my skin. While undoubtedly well intentioned (and likely over-worked and exhausted), nearly all of them suggested that my "sensations" (of pain, itchiness, etc) were the product of my "anxiety." When I noted that I was less concerned with my "sensations" and more concerned with the physical debris themselves (and whether or not they were infectious), they repeatedly told me that the following debris (see below for pictures of intricately woven clusters of fluorescent filaments, perfectly symmetrical geometric patterns, multi-colored spike/spheres, and worm-like structures that move independently and respond to stimuli) looked like little more than hair, dried blood, or like the "result of picking at one's skin." The few doctors that would take my concerns a bit more seriously (and actually look at my skin or at the pictures I'd taken), usually directed me to the recent literature on "Morgellons" and the correlation (often couched as causation) between Lyme (borellia) and the subcutaneous filaments associated with Morgellons. Whether the product of "picking" or by-product of Lyme, they all concluded that there was "no way it was infectious or environmental." Even those who admitted they'd "never seen anything like that" and "had no idea what it was," still assured me that "it was perfectly safe to be around other people because it can't be infectious." Most often, the doctors' responses were to "try not to be anxious," take anti-anxiety meds, or to stop looking at my skin (a few dermatologists offered me samples of Dove body wash...presumably thinking the placebo effect would work it's wonders). And in every case, they refused to run any of the diagnostic tests I asked about (e.g., skin scraping, skin biopsy, etc.). After seeing over 10 medical professionals, not a single one had noticed that I never even had a CBC done; yet, this didn't stop them from making rather serious diagnoses of mental illness (or, as one doctor put it, "having a different reality than [she] had"). At one point, when I nearly begged for a mere skin scraping, a dermatologist told me she "didn't want to do a test without knowing what we'll find." Isn't that the purpose of doing a test?, I wondered. Later, I realized that she was likely afraid I would see Candida or some other microbe (our microbiome is ridden with countless --necessary!!--organisms) and spin out into a spiral of anxiety (for the record, even if I wasn't already well aware of the microbiome, this would not be a difficult thing to explain to a patient). Even the practitioners and researchers who have recently taken an interest in Morgellons--who had published numerous case studies and reports (and in doing so, done wonders to give the patients' credibility in practitioners' eyes)--were somewhat dismissive of the possibility of an environmental condition or of something infectious (my sense was that this seeming dismissiveness actual stemmed from their deep commitment to helping Morgellons patients, as these practitioners/researchers knew many MD patients were relegating themselves to isolation out of fear of being infectious; I imagine that they were also reacting to the long-standing and dominant assumption that Morgellons patients had "delusions of parasitosis"--tying Morgellons to Lyme gave the condition at least a touch of medical credibility, and going anywhere near the topic of parasites might have felt like a dangerous foray into enemy territory) . At this point, I, too, wondered if the things I was seeing and feeling was the product of a neuro-chemical or neurological imbalance. The doctors assured me that they "didn't think I was crazy or that my symptoms weren't 'real'," but I explained that I didn't feel like hallucination/psychosis was any less 'real' (or "material") than a run-of-the-mill histamine reaction, let alone reason for shame or embarrassment. "If it is neurological of what you'd call 'psychological,' that's fine," I told them, "I simply want to find that out by actual examination testing rather than reliance on assumptions about what is possible. I didn't feel comfortable risking other people's safety/health on what seemed to me like flawed logic ("I have no idea what it is but surely it isn't infectious."). And I was terrified that this whatever-it-is was spreading throughout my body, home, and family, and that no one was helping me treat it because they ***assumed** it was the mere product of "picking" or of Lyme (again, without testing and in nearly every case, without even doing an exam). My hunch was that these structures were not mere hair or blood and that any "picking" was more a result of the pain caused by the structures (even if it exacerbated the inflammation). And either wya, I didn't want to rely on doctors' assumptions or on my gut feeling. So to test my suspicion, I started to examine the environment. My thinking was as follows: presumably couches, tables, countertops, trees, flowers, ceramic mugs, stainless steel pans, and the like could not "pick" their skin or suffer from a product of Lyme, and they certainly didn't have hair or blood that might be confused for the structures at hand. So, I thought, if I found these same structures in my environment, then surely the doctors will have to concede that there is reason to test for pathogens (bacterial, fungal, etc.). I fully understood (and still recognize) that I do not have the training to identify organisms properly, but since I couldn't get any of the medical or environmental experts I spoke with to do a formal investigation, I decided that my best chance was to take the best photographs/video I could and then get them in front of people with the training to at least make some educated guesses about what I was dealing with. When I started to look more systematically, I found these same (highly specific) structures in every single location I went (across both Connecticut and Rhode Island), including: 2 single-family homes, 1 apartment/condo, 5 different hotel rooms, and later (once I concluded that I was not contaminating these spaces), in a handful of boxing gyms, restaurants, and stores. At first, this fueled my fears that I was indeed hallucinating/suffering from some kind of psychotic break with "reality." Then, when I confirmed that other people were seeing the same things I was seeing (once I showed them pictures and they knew what to look for), I concluded that I was not "hallucinating" in the conventional sense (the jury's still out on whether the entire universe as we perceive it is a simulation....but more on that later). Then, I started to panic that I was somehow contaminating all of these spaces. So, I booked a series of 4 different hotel rooms and planned stays in a few friend's empty houses (after informing them of everything that was going on, of course). As soon as I arrived at every room/home, I (neurotically) inspected it from top to bottom(documenting what I found). In each place, the structures I'd grown to recognize as part of this whatever-it-is were quite elaborate and large, leading me to suspect that this whatever-it-is had been there for a while now and that I wasn't the source of contamination. When I eventually started to suspect that this organism was widespread, I began to trust that it was safe for me to be around other people and in other people's spaces. And again, wherever I went, I found these same structures. Every day since, I've questioned myself and what I was seeing. How could it possibly be this widespread without others noticing? My "rational" mind made various attempts to distract from what I was documenting: For organizational purposes, I've grouped them by structure/process (see indices below), but I've documented these structures in ALL of the following: embedded in/below my skin, coming out of my skin, and on/in my hair in my cats' fur, whiskers, and vomit inside homes/hotels/etc. (indoors; in various states in the Northeast U.S.) in yards, parks, streets, etc. (outdoors; in various states in the Northeast U.S.) Still, with every doctor (politely) suggesting that it was the product of anxiety, I began to wonder if it was actually the product of hyper-vigilance. My fear was that if these structures were not , that then there was a chance the condition could be infectious and actively spreading. (a) hair/blood, (b) the product of "picking at one's skin," or (c) the by-product of Lyme Early on, I started to notice that the same structures that were coming out of my skin were also appearing in my environment. (the "measurement problem" **Note: I do not know if this is all one organism, and I am not trained to make that assessment; however, since I continue to repeatedly find what look like these same structures all together, I've come to think of it as one organism (or group of related organisms

About THIS SITE

My goal: it's more than filaments

More than a mere record of my individual struggle with these odd health symptoms and my family's experience with the associated building damage, my hope is to use this experience to shed light on a phenomenon that is currently plaguing hundreds of thousands of people worldwide (often called "Morgellons")--one that is mired in so much controversy and reactivity that it is easily ( and conveniently) dismissed as total nonsense. Ideally, I'd like to help push that conversation in two ways:

To abandon the "Is it 'real' or is it 'delusion/psychological/imagined?" debate (I see this as a remnant of the deleterious mind/matter material/ideal dualities-- long a mainstay of western ideology--and long a sure path to ignorance and exclusion. I hope to follow those who try to transgress that thinking--whether those examining quantum theory in physics labs or those doing energy healing on themselves and others. Whether "hard science" or "woo woo," both remind us that this stuff we call "reality" might be little more than a simulation. Plus, I personally think that anyone who feels entitled to arbitrate what counts as "real" is suffering from a moment of debilitating hubris and/or cognitive dissonance)
To move beyond a focus on "Morgellons" as an individual health issue (where we point our microscopes exclusively at our skin), and to broaden our scope to include the environment writ large.
To move beyond the fixation with Morgellons filaments/fibers and to examine the many other types of structures that are present in this condition.

You might also stumble upon a rant or two (or ten) about the intersections of health, the corporatization and pharmaceuticalization of health care, environmental degradation, capitalism, and scientific knowledge production. I'll try to keep the academic jargon to a minimum, though.

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While there might seem to be an absurdly wide variety of structures, I have only focused on those which are in/on my body. I first documented all of the structures within/on my skin/hair and my cats' fur/whiskers, and then began documenting what *appeared* to be the same structures both indoors and outdoors. By showing the **seeming** similarity in the structures coming out of my body and those in the environment, I hoped to help:

counter my doctors' arguments that the structures were "just hair or dried blood" and therefore "noting to look into or worry about" (as far as I know, trees, countertops and sheets don't have hair or blood!)
support my suspicion that structures were alive (or at least moving independently), that they might be infectious, and that this might be an environmental issue that required environmental response, not just giving me antibiotics)
help push the "morgellons" conversation beyond a hyper-fixation with the individual body and with filaments/fibers

What's with the title (culture 'as' delusion)?

It's a reference to McDermott and Varenne's article, "Culture 'as' Disability."

McDermott and Varenne deftly illustrate three different ways to look at the causes (and associated solutions) to any perceived disability (the first of which are quite dangerous, and the third of which is massively complicated but arguably our only hope of actual change):

(1) Person X is disabled. (The disability is IN the person, regardless of context.)--> 'Fix' the person .

(2) Person X just looks disabled because he/she/they does things differently. (The disability is in the person's capacity to adapt to the hegemonic context; and maybe a bit of it is in the context's ability to accept 'difference'.) (It's a misunderstanding)--> Assimilate the person (and maybe offer a few 'cultural competency' workshops to help her/his/their colleagues better understand her perceived differences and make a more accepting context')

(3) Categories like 'ability'/'disability' are cultural achievements (meaning they are not innate facts but rather, are ideas that are only made material by the ongoing work of a whole collective of people) that serve particular political economic ends. That is, ascriptive categories (whether disability, race, gender, etc.) are continually remade in ways that help organize the current distribution of resources and help rationalize/justify/protect that organization. Disability (like race, gender, etc etc) is not innately IN any person. Rather, people display certain characteristics (e.g., phenotype, accent, strings coming out of their arms) to which others learn to assign a cultural category, often in ways that serve the existing economic order. As long as that political economic order demands some mechanism of exclusion and exploitation, there will be a need for ascriptive categories to help identify who is and who is not included. Tinkering with who is or is not a member of said categories only helps distract from the root of the problem: the fact that the economic order demands some system of categorization. (The 'disability' is in the collective and in our ongoing engagement in performing the work of categorizing that serves the economic order).--> Shift the economic order so that there is no material need to privilege some at the expense of Others.

There's more on 'culture as disability' below, but my aim is to use this heuristic to think about the ascription of 'delusion,' particularly in the case of Morgellons and other related conditions. I think it helps re-frame the conversation away from the 'deficit' and 'difference' perspectives and towards what McDermott and Varenne call 'political':

(1) Person X is deluded (she thinks there's foreign debris crawling under her skin, and I believe it to be impossible, so it must be a delusion).--> 'Fix' the person (e.g., pharmaceuticals to recalibrate her perception or to neutralize/numb her) [there's also a version of this that focuses on practitioners' perceived malevolence and deems the solution is finding 'better' or 'more empathetic' practitioners.]

(2) Person X looks delusional because she has a condition about which the mainstream medical community is not yet knowledgeable. (It's exacerbated because patients describe their symptoms in ways that doctors' think sounds 'crazy'). (It's a misunderstanding) --> Educate the practitioners and patients.

(3) Dismissing patient X as 'delusional' helps to maintain the assumption that the problem is in the patients (or the practitioners) rather than the way we've organized contemporary health care and our relationship to the Earth and our bodies. The 'problem' has roots in a convergence of factors (all of which are themselves rooted in capitalism/the upward distribution of wealth/neoliberal de-regulation). In my opinion, these factors include:

(i) climate degradation (and emergence of pathogens in new areas)

(ii) weakening innate immune systems (due to increasing use of antibiotics, pesticides, electromagnetic smog, and inumerable other toxins as well as the stress of alienation/loss of community--all of which shift the body's terrain and limit its ability to live harmoniously with the shifting biome), making 'immuno-competetant' folks vulnerable to pathogens that perviously only threatened those who were immuno-compromised

(iii) the pharmaceuticalization and corporatization of health care (meaning practitioners often have 3 minutes to diagnose and treat a patient and are pushed to do so with one-size-fits-all techniques that use pharmacology to mitigate symptoms are rarely identify root causes; practitioners efforts to resist this model often jeopardize their own job security which--when faced with debts from medical school and current cost of living--is not a risk many can afford to take; medical schools are also teaching medicine that was appropriate for dramatically different environmental conditions; medical education and discourse is massively influenced by 'big Pharma' as well as the agricultural, dairy, cosmetic, etc etc industries, all of which have a tremendous material interest in fixating on efforts to 'cure' disease (esp cancer) rather than prevent it (by way of changing industrial practices and altering lifestyles/etc)

(iv) the rise of the internet (and WebMD/chat rooms/blogs/social media) so that patients can research the symptoms they are experiencing, communicate with those who are experiencing similar things (most of whom are not medical practitioners), etc., fueling anxiety about one's health conditions (particularly at the same time that human health is massively deteriorating) and distrust of medical practitioners

Recognizing the root(s) of the problem would mean facing the reality that most of our efforts to address contemporary illness (specifically the chronic forms) are fool's errands and that real 'solutions' would require massive overhauls of our entire way of life (how we work, eat, communicate, socialize, travel, etc.), much of which we've come to feel entitled to .

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McDermott and Varenne's paper opens with a discussion of 18th century Martha's Vineyard (Massachusetts), where deafness was NOT considered to be a significant disability. The community was organized such that one need not be able to hear to be a full participant. Everyone had basic fluency in American Sign Language, so communication wasn't an issue. Plus, since the government paid for deaf students to attend school (while many students had to drop out long before high school), those with hearing challenges were often among the most highly skilled readers and writers in the community. So, if you wanted a paper read or letter written, you'd likely turn to a friend who was hard of hearing. That is, until travelers started visiting the community--travelers who didn't know sign language and who had learned that deafness was a disability. Deaf folks in Martha's Vineyard couldn't communicate with these travels (nor visa versa). Flash forward a bit and imagine the arrival of technology like telephones that (at least initially) required hearing. Little by little, as society changed to privilege hearing-ness at the expense of deafness, those who were hard of hearing became increasingly excluded and were labeled as 'disabled.' But McDermott and Varenne remind us thatL "one cannot be disabled alone." In fact, since the kinds of labels we have available often shifts with the political economic conditions (and is enforced by institutions that serve those conditions),

The aim of that paper is to show that 'disability' is not a characteristic of individual people; rather, iMcDermott and Varenne's work shows that disability (and ability)--like any other ascriptive category-- is the product of our collective and ongoing work. We, as a 'culture' produce those categories and ascribe them to people in ways that inequitably distribute resources. More simply, the 'disability' isn't in the person labeled as 'disabled'; it's in the collective that is doing the work of (dis)abling certain characteristics and not others.

McDermott and Varenne suggest that the ways we ascribe labels like 'disabled' (or 'delusional') says more about about the current political economic environment than it does about those to whom that label is ascribed. The 'disability' is produced by that institutional arrangement; it doesn't naturally or irrevocably dwell within the individual herself. It's situational: take someone who can hear and put them in a community that exclusively communicates in sign language, and she will appear to be disabled (or not able to fully function within those specific conditions) . With that in mind, where is the 'disability' located-- in the person or in the conditions?

Over the last year or so, as I've continually been told I am describing things that "can't be real" or "are surely delusion," I've often returned to this line of thought and reminded myself that delusions--like (dis)abilities--are a cultural fabrication.

To say disabilities--or delusions--are cultural fabrications is not to say they are not "real" or not based in 'material reality.' Deaf folks in 18th century Martha's Vineyard were not able to perceive the vibrations we call 'sound.' Over the last year, I have seen and felt countless absurdly weird structures coming up out of my skin. I'm not dismissing either of those facts. Instead, I'm saying that the way both events (not perceiving 'sound' and perceiving weird structures) are interpreted have far more to do with the culture as a whole than with those who are doing --or not doing-- the perceiving.

So the real question is: what political economic arrangements are served by labeling descriptions of these symptoms as "unreal" or "delusional"? And how are we all-- "labelers and the labeled alike," as McDermott and Varenne would say--participating in the production of the category of 'delusional'? What institutional practices necessitate the constant surveillance and labeling of 'delusions'? How are we participating in its ascription? And most importantly, how can we do things differently moving forward?

[The full article is available below. Read p. 328 if you'd like to have your view of the world turned upside down (in the best possible way, I think). ]