September 22, 2002

The stories we hear

Category: Anthropology,Health — Biella @ 11:10 am

There is not too much that is stable in my life these days except there is this one weekly anchor point, my volunteer shift at Quan Yin Healing Arts Center. Despite my travels I amazingly have avoided missing my Thursday shift, choosing to leave Thursday evening or Friday morning and returning by the following Thursday. At this point, it seems like it is one of the more centering things in my life. I look forward to the simplicity of completing my few tasks there: pulling needles, providing moxa therapy, and changing sheets. The energy there is very calming acting like a weekly oasis, allowing me the space to recenter after the fragmentation that travel sometimes causes. I have been there over a year and it saddens me to think that I will be leaving there sometime during the spring or summer. Part of this is entry is to let local San Franciscans who might read this (not many I believe) that they are now accepting volunteer applications. If you have the time, I say grab this opportunity. It is a wonderful place to spend three or four hours of your week and you will learn something about Chinese Medicine and acupuncture too, treat lots of people with moxa and be reminded of the important things in life. So, if you have sometime during the week, drop on by and apply!

This last Thursday seemed a bit more special than most, although a little more sad than most too. Patients tend to come to see the same acupuncturists. As a result I have come to know some of even them though verbal exchange is kept to a minimum. There is one large treatment room so it is important to be quiet. Every once in a while, a patient decides to be chatty or the room is empty so conversation flows. This last week was one of those times. One woman brought in her photos from her trip to Chicago knowing I lived there for a while and that I have a soft spot in my heart for the amazing cityscape that is Chicago. That was really thoughtful of her. My second conversation was not quite as cheerful. I am not sure how I even began talking to this other patient, who I have seen over the last couple of months, starting up at the ceiling very calmly while I treat her with moxa. Oh, wait, I remember now. She was surprised that moxa could be smokeless. She then basically told me that she was so glad that we used smokeless moxa because she suffers from MCS –> Multiple Chemical Sensitivity. It is an illness that simultaneously fascinates me, breaks my heart, and scares me . Those with MCS are sensitive to manufactured modern industrial chemical products ranging from perfumes, plastics, dyes, smoke and other caustic chemicals, so much so, they often have to shield themselves off from the environment and people, creating a “Safe” space away from that which makes them ill. Illness, as a social state is or can be an isolating experience. MCS brings this state to another more harrowing level of isolation.

With chronic illness, the body as it regularly functions ceases to be, unraveling one’s ability to conform neatly to the normal rhythms of life and relationships. The experience of and moving through time, space, and social relationships must change to accommodate this state of dis-ease. Healing often is a reconstitution of self, place, and time so that one can reintegrate the self back into the everyday rhythms of life as much as possible. Chronic illness never allows the same full type of reintegration although there is usually some level or form of reintergration. But with something like MCS, reintegration is nearly impossible as long as the chemical sensitivities exist so that the self cannot exist outside of it self, so that one remains a prisoner to oneself:

“You are inside most of the time…. The inside, brought about by built environments of late capitalism, provides your habitat, the milieu for your environment. Then one otherwise ordinary day your throat begins to constrict when you enter your newly renovated office building. Or your chest tightens at the photocopier. Or you notice you’ve been overwhelming fatigues and foggy since they fumigated your apartment. A nebulous constellation of symptoms grips your body and will not let go. Your doctor can’t find anything wrong, yet your body seems to have run amok. The built environment, so familiar, that pervades your daily life becomes the site of your suffering” (Murphy 2000:87).

The patient at Quan Yin at one point confessed to me: “I can’t work, I can’t do what you do here. If some patient walked in with perfume, I would choke.” Here I was doing something I absolutely love being told that there was no way that she could ever do such a thing. It is not easy to hear those words but it is important to hear them.

It is a maddening illness that most conventional doctors treat with a high degree of skepticism as there are no “hard” diagnostic tests by which to “find” MCS in a person. The diagnostic apparatus of Western Medicine heavily relies on the authority of tests, tests that render complex processes in the body tangible and visible, seriously sidelining the authority that might come from from the patient’s experience and their account. It even lessens the authority of doctors who chose to rely primarily on the hard, scientific authority of tests rather than the murkier terrain of clinical history. Though I, like most people who are tested for something, like the hardness, transparency, and reliability of tests, this lack of willingness to engage with the experience of patients is one of the true illnesses or our modern medical system.

I went to graduate school to become a medical anthropologist and although I have veered off this path to pursue studies in technology and society, I have not stopped thinking about questions of medicine, culture, and society. They are too rich for understanding the existential, philosophical,cultural, and political dimensions of life. Doctors and scientists are often resistant to thinking of biological or supposed purely scientific processes in non scientific terms but the two are not necessarily incompatible. It is that our cultural-philosophical orientation towards dualism makes those trained in the hard sciences uncomfortable with seeing phenomenon beyond the dualism or actually just culturally unable to do so. With that said, the materiality of illness is always my starting point for understanding illness. Though I fine tune an eye for the social when thinking about illness, the materiality of illness exists. Plain and Simple, even for some of the harder to pin down ones, like mental illness or the range of syndromes like fibromyalgia and MCS that have caught like wildfires in modern industrial societies, especially among women. Some social scientists want to deconstruct illness as something primarily social, especially those that pertain to the realm of the emotions and mind. As noted by Tonya Lurhman who has written an excellent account of conflicting ideologies in the field of American Psychiatry, to deny the materiality of illness, especially mental illness, is morally reprehensible:

“Madness is real and it is an act of moral cowardice to treat it as romantic freedom. Most people who end up in a psychiatric hospital are deeply unhappy and seriously disturbed, and many of them lead lives of humiliation and great pain. To try to protect the chronically mentally ill by saying they are not ill, just different, is a misplaced liberalism of appalling sensitivity to the patients and to the families who struggle so valiantly with the difficulties of their ill family members.” (lurhmann 2001:12).

I am not sure why I am stating this take towards illness so strongly except for the fact that this is the starting point for understanding the phenomenon of illness, I think from any perspective. It is has a material existence that passes through individual bodies, usually causing disruption and a litany of pain. Not to acknowledge this is not to acknowledge a vital part of its reality. Hearing the patient’s story about MCS is primarily about this disruption to her life and not to honor it in some way seems, well inhumane.

But it is precisely because illness refracts into the very fibers of life that one can examine it beyond the pure physicality of it. There is a sort of sad equivalence between the pain and disruption that illness reverberates and the myriad ways in which illness and its social life can be examined whether it is the creation of new subjectivities, the formation of alternative communities of practice and consumption, the politics of bodily control, the relationship between illness conceptions and treatment methods etc.

One of the more striking things about MCS is the whole question of invisibility. MCS’ers often have to reside in a safe space away from the “normal” environment which makes them so ill. But what is so interesting and powerful is that MCS make visible for us, the general population, the invisibility (and possible harm) of the toxic environment that we live in. We move through our days without much of an awareness of the various chemicals, additives, pollutants that are very invisible to us, yet are really really there, moving through our bodies every day. I know that the jury is not out on the “effect” of these chemicals on our bodies but part of my little intuitive sense tells me that exposure over one’s lifetime to a myriad of chemicals and pollutants uhmmm, does not produce ideal health (I think that one of the problems with determining the effect of certain pollutants and chemicals is that imho to test them properly, you need to test the compound effect of many over a long, long period of time, like 30 years! I don’t think most grant cycles run in that long of a period)

For whatever reason, still quite unknown, MCSers bear the brunt of living in a world that is filled invisibly with all these things that really might have a detrimental effect on our selves and environment. The effects might not be totally known yet something is amiss with the use of the compounds many of which are explicitly toxic. MCS bodies and lives act as a sort of microscope, enlarging, amplifying, and making real what we chose to ignore (and various industries want us to ignore) because ironically enough it feels safer for us to do so. But this feeling of safety of not thinking about these things is somewhat false. The safety that the MCSers have to find away from the pollution is much more real than the safety that comes from just choosing not to think about those things that if we really, really really thought about them, are uncomfortable and distressing.

One conversation with a person with MCS will snap you out of that false sense of safety, reminding you that what we breathe, what we eat has real consequences. It blasts right through the shiny and seemingly pristine nature of so much of the stuff that surrounds us.

Illness narratives or externalizing what is going on inside the mind and body of the patient can be extremely therapeutic for illness sufferers, allowing a form of externalization where social connections and relationships can be formed. They are stories that serve to not just convey meaning but shape social reality. They are especially powerful for the more ambiguous forms of illness as they give structure and form to the chaos and incoherence of the states of disease. I have heard many illness narratives among the sick in Kali Mai churches in Guyana, reading them online on various support group meetings and attending support group meetings. But it was this particular story, when I was waving the hot moxa stick over this woman’s body that I came to realize that these narratives can also function as a form of demystification of sorts. It worked to shock me out of my own complacency and safety of how I move through this environment, lending a different perspective at least for a short while. It is important for us to lend an open and willing ear to these stories.

Lurhmann, T.M. 2001 The growing disorder in American Psychiatry Alfred A. Knpof: New York

Murphy, Michelle. 2000 “The ‘elsewhere’ within here’ and environmental illness; or, how to build yourself a body in a safe space. Configurations 87-120.

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