Chaotic bodies, safe space and the Chaotic bodies, safe space and the enigma of environmental illnessenigma of environmental illness

Dr Fiona CoyleDr Fiona Coyle

Doctor:Doctor: I’ll do a physical exam today, repeat the I’ll do a physical exam today, repeat the blood tests as well as get more information about the blood tests as well as get more information about the timing of the symptoms.timing of the symptoms.

[Hmmm. I wish this patient would just get better! [Hmmm. I wish this patient would just get better! I’ve tried everything I know to pin down the diagnosis I’ve tried everything I know to pin down the diagnosis but nothing has come up. I suppose she could have but nothing has come up. I suppose she could have environmental sensitivity disorder - I haven’t been environmental sensitivity disorder - I haven’t been able to come up with any other diagnosis. But there’s able to come up with any other diagnosis. But there’s so little evidence about its cause and treatment. That so little evidence about its cause and treatment. That leaves me between a rock and a hard place. What can leaves me between a rock and a hard place. What can I offer a patient like this?]I offer a patient like this?] (Weston et al, 1991:42). (Weston et al, 1991:42).

SchemaSchema

Introduction to Environmental Illness (EI)Introduction to Environmental Illness (EI) The complexity theory model of illnessThe complexity theory model of illness Bodies in chaos need safe spacesBodies in chaos need safe spaces Case study on Case study on The Production of SpaceThe Production of Space: The : The

Environmental Health Centre, Nova Scotia Environmental Health Centre, Nova Scotia (EHCNS)(EHCNS)

ConclusionConclusion

What is environmental illness?What is environmental illness?

Symptoms include: chronic fatigue, muscle Symptoms include: chronic fatigue, muscle spasms, severe headache, brain fog, anxiety spasms, severe headache, brain fog, anxiety and depression. and depression. Appear after exposure to ‘safe’ levels of chemicalsAppear after exposure to ‘safe’ levels of chemicals Can change over timeCan change over time Switch between different organ systemsSwitch between different organ systems Effects disproportionate to their causeEffects disproportionate to their cause Often labelled as ‘psychiatric’Often labelled as ‘psychiatric’ MultifactorialMultifactorial

What is complexity theory about? What is complexity theory about?

The “study of the behaviour of macroscopic The “study of the behaviour of macroscopic collections of simple units (atoms, molecules, bits, collections of simple units (atoms, molecules, bits, neurons) that are endowed with the potential to neurons) that are endowed with the potential to evolve in time (Coveney and Highfield, 1995:425). evolve in time (Coveney and Highfield, 1995:425).

Basic assumptions: sensitivity to initial conditions, Basic assumptions: sensitivity to initial conditions, non-linearity, emergence, self-similarity at different non-linearity, emergence, self-similarity at different scale levels (fractals), feedback, critical thresholds, scale levels (fractals), feedback, critical thresholds, self-organisation and unpredictability.self-organisation and unpredictability.

Body and environment separate but interconnected Body and environment separate but interconnected systems – chemical reactions trigger structural systems – chemical reactions trigger structural changes and threaten adaptability.changes and threaten adaptability.

Sensitivity to Initial ConditionsSensitivity to Initial Conditions

That’s the trick with environmental sensitivities, That’s the trick with environmental sensitivities, everybody’s unique. There’s no universal principles everybody’s unique. There’s no universal principles or laws because we’re all individual bodies. I cannot or laws because we’re all individual bodies. I cannot be like you or anybody else.be like you or anybody else.Aurora, HalifaxAurora, Halifax

I think there is a pattern…I mean, when we talk to I think there is a pattern…I mean, when we talk to people, we can understand perfectly what people are people, we can understand perfectly what people are talking about and their reactivity and everything. But talking about and their reactivity and everything. But their circumstances may be very unique to them.their circumstances may be very unique to them. Healthcare Professional, EHCHealthcare Professional, EHC

Critical thresholdsCritical thresholds It’s all of it, because I was exposed to all of it. The pre-It’s all of it, because I was exposed to all of it. The pre-employment injections, the nerve agent that we were ordered employment injections, the nerve agent that we were ordered to take, the anthrax inoculations…then all the toxic exposures to take, the anthrax inoculations…then all the toxic exposures through the war and hands on with prisoners of war that had through the war and hands on with prisoners of war that had shrapnel wounds, radioactive shrapnel wounds, now that I shrapnel wounds, radioactive shrapnel wounds, now that I know. So you know, this piles up and up and up.know. So you know, this piles up and up and up. Leadora, OttawaLeadora, Ottawa

I know all my life, I have really bad allergies. And they got a I know all my life, I have really bad allergies. And they got a little bit worse each year I was in the city. So what I think is little bit worse each year I was in the city. So what I think is that it was the straw that broke the camel’s back. I was just in that it was the straw that broke the camel’s back. I was just in a situation which was too much for my immune system and it a situation which was too much for my immune system and it coped as long as it could and then it just crashed. Not for any coped as long as it could and then it just crashed. Not for any particularly good reason on that day. It was gonna happen particularly good reason on that day. It was gonna happen sometime.sometime.Rohan, OttawaRohan, Ottawa

Bodies in ChaosBodies in Chaos

You see, what I envisage actually happens to You see, what I envisage actually happens to people is that, it doesn’t matter what the people is that, it doesn’t matter what the stimulus is, is that the person goes from an stimulus is, is that the person goes from an orderly balanced state into chaos…when the orderly balanced state into chaos…when the autonomic nervous system goes out of balance autonomic nervous system goes out of balance and is dis-regulated, you can get all kinds of and is dis-regulated, you can get all kinds of bizarre reactions and that person is just totally bizarre reactions and that person is just totally out of balance.out of balance.Healthcare Professional, EHCNSHealthcare Professional, EHCNS

And apparently that wasn’t the last straw, because I And apparently that wasn’t the last straw, because I already was full of chemicals or whatever, which I already was full of chemicals or whatever, which I didn’t know. That sort of made the glass overflow didn’t know. That sort of made the glass overflow and from that moment on, everything went really fast, and from that moment on, everything went really fast, the symptoms, one after another.the symptoms, one after another. Siobhan, OttawaSiobhan, Ottawa

If wheat plus cheese plus that exhaust equals a If wheat plus cheese plus that exhaust equals a reaction, you know, the complexity of it just explode, reaction, you know, the complexity of it just explode, like you can’t think of these. So what, so those 15 like you can’t think of these. So what, so those 15 foosd together, that will equal a reaction, you know? foosd together, that will equal a reaction, you know? Its very frustrating thinking about it.Its very frustrating thinking about it.Rohan, OttawaRohan, Ottawa

Bodies in chaos need safe spacesBodies in chaos need safe spaces

Corporeal chaos = war metaphor in patient discourseCorporeal chaos = war metaphor in patient discourse Characterised by turbulence, unpredictability, Characterised by turbulence, unpredictability,

uncertainty, the fog of communication blackouts and uncertainty, the fog of communication blackouts and in this case, a loss of personal control (Paul Virilio in this case, a loss of personal control (Paul Virilio and Manuel De Landa)and Manuel De Landa)..

Safe space associated with control, stability and Safe space associated with control, stability and predictability, communication and the presence of predictability, communication and the presence of uncontaminated, clean air.uncontaminated, clean air.

Examples: home, car, ‘natural’ spaces, EHCNSExamples: home, car, ‘natural’ spaces, EHCNS

The EHCNSThe EHCNS

Representations of Space: Representations of Space: a decentralised planning operationa decentralised planning operation

A “conceived space” as denoted by “scientists, A “conceived space” as denoted by “scientists, planners, urbanists, technocratic subdividers planners, urbanists, technocratic subdividers (decoupiers et agenceurs), as of a certain type (decoupiers et agenceurs), as of a certain type of artist with a scientific bent” (Lefebvre, of artist with a scientific bent” (Lefebvre, 1991, p.38).1991, p.38).

Construction of an experimental utopiaConstruction of an experimental utopia Collusion between various stakeholdersCollusion between various stakeholders

The architects of Nova Scotia’s Environmental The architects of Nova Scotia’s Environmental Health Centre in Fall River are taking great Health Centre in Fall River are taking great precautions to protect the air inside the building, even precautions to protect the air inside the building, even if it means creating a NASA-like research lab. No if it means creating a NASA-like research lab. No smoking by the construction crews, no garbage on smoking by the construction crews, no garbage on site, no idling engines in the parking lot, no heavy site, no idling engines in the parking lot, no heavy deodorant, no mail delivery and definitely no visitors. deodorant, no mail delivery and definitely no visitors. Even the upcoming grand opening won’t include Even the upcoming grand opening won’t include guided tours – not even for the politicians who guided tours – not even for the politicians who approved the funding.approved the funding.

The Halifax Daily News, February 16, 1997, Daily The Halifax Daily News, February 16, 1997, Daily Edition, p.25.Edition, p.25.

Spatial practices: Spatial practices: the construction of healing spacesthe construction of healing spaces

A materialised, socially-produced, perceived A materialised, socially-produced, perceived space, which incorporates the repetitive tasks space, which incorporates the repetitive tasks and “status quo practices” of everyday life and “status quo practices” of everyday life (Soja, 1996, p.66; Shields, 1999). (Soja, 1996, p.66; Shields, 1999).

Offices, technologies, medical records, the Offices, technologies, medical records, the photocopier room and a small kitchen/staff photocopier room and a small kitchen/staff roomroom..

Zone 1Zone 1

A complexity theory perspectiveA complexity theory perspective

1.1. Acceptance of sensitivity and difference.Acceptance of sensitivity and difference.

2.2. Crystallise chaos, using the Butterfly EffectCrystallise chaos, using the Butterfly Effect

3.3. Hyperactive CNS calmed via biofeedback Hyperactive CNS calmed via biofeedback and meditation to lower reactivity levelsand meditation to lower reactivity levels

Rehabilitation counsellor: ‘we share the air’ Rehabilitation counsellor: ‘we share the air’ and search behaviour.and search behaviour.

Zone 2Zone 2 The reception, waiting room, sauna room and The reception, waiting room, sauna room and

gymgym..

Patients and their accompanying relatives will not only be Patients and their accompanying relatives will not only be screened for scents, they may even be asked to hit the screened for scents, they may even be asked to hit the showers…When they come in, they will be sniffed, very showers…When they come in, they will be sniffed, very politely’ he said...We want people to feel safe and secure’.politely’ he said...We want people to feel safe and secure’.Dr Fox, quoted in The Halifax Daily News, February 16, Dr Fox, quoted in The Halifax Daily News, February 16, 1997, Daily Edition, p.25.1997, Daily Edition, p.25.

Zone 3Zone 3 Sealed by a coded door, houses doctor’s Sealed by a coded door, houses doctor’s

offices and treatment/testing lab.offices and treatment/testing lab.

Spaces of Representation: Spaces of Representation: resisting predictabilityresisting predictability

““lived spaces” are linked to the “clandestine or lived spaces” are linked to the “clandestine or underground side of social life” (Soja, 1996, underground side of social life” (Soja, 1996, p.67). p.67).

Organic GardenOrganic Garden

You teach a patient grounding, so that they put something into the ground like plant a tree, they see that the roots are growing, and you know, watering and healthy, so they can reflect on their own life. I think, like this patient goes out there, she used to have a mask and now she’s just, you know, she walks out in the garden and she’s learnt by coping skills to tolerate things out there. Healthcare Professional, EHCNS

Sauna smellsSauna smells Detoxification triggers Detoxification triggers

emission of odoursemission of odours E.g. one patient emitted E.g. one patient emitted

noxzemnoxzema, a former ‘Avon a, a former ‘Avon lady’ began to smell of lady’ began to smell of perfumeperfume

This ‘wasn’t a consistent This ‘wasn’t a consistent model of change” model of change” (Healthcare Professional, (Healthcare Professional, EHCNS)EHCNS)

ConclusionConclusion

Health professionals turned to paradigm of Health professionals turned to paradigm of complexity theory for their answers to such complexity theory for their answers to such unpredictable, dynamic corporeal behaviour.unpredictable, dynamic corporeal behaviour.

““This is a little more ‘playing with puzzle pieces’, This is a little more ‘playing with puzzle pieces’, ‘listening to the whole story’ and ‘trying to find ‘listening to the whole story’ and ‘trying to find new alternatives’” (Aurora, early thirties). new alternatives’” (Aurora, early thirties).

Lived bodies as “subjects of study”, serve to Lived bodies as “subjects of study”, serve to critique, educate and potentially change critique, educate and potentially change ideologically dominant medical frameworks.ideologically dominant medical frameworks.