So I’m standing here, in the high desert, a thousand miles from anywhere I could call home. Without my glasses, without my hair, without my beard. Wearing somebody else’s clothes, which don’t even fit me.

Am I even in my own skin? Or am I, somehow, beside myself?

Just how far do you go, to maintain a friendship?


Julie Laffin was once described by the Chicago Reader as that city’s “best loved performance artist.”  She is best known for her extraordinary fabric sculptures — giant dress constructions that she activates through performance.

0002 Usually, these performances would occur outdoors – on the streets of Chicago or other cities – and the audience would consist of whomever happened to pass her by (as well as anyone who had prior notice, through festival schedules etc.). When I interviewed Julie in 1997 for a journal article I was writing about her work, she described her objective with these performances as “interrupting the everyday”. She wanted passers-by to see something unexpected, something striking, an image that would haunt their memory of that space the next time they passed through it.

Since around 2004, however, Julie’s own everyday life has been severely interrupted. And she doesn’t inhabit public spaces any more.

kiss_piece“She must have washed that dress a thousand times. Washed all the memories out of it. She tried to remember exactly how and why she had lost her identity.”

Julie now suffers from a severe form of environmental illness known as Multiple Chemical Sensitivity, or MCS. It makes her acutely reactive to the low level chemical fumes given off by everyday detergents, soaps, shampoos, perfumes and plastics (to name only the most obvious problems). Julie’s consequent need to isolate herself from anything that might trigger a reaction has left her largely housebound, unable to interact with those of us (almost all of us) who carry these chemical scents with us in our hair, skin and clothing.

The sad irony is that Julie seems to have developed the condition in part as a result of her own artistic practice, which has always necessitated working with large quantities of fabric–and thus with the chemical dyes, formaldehyde, napthalene, etc., that are frequently impregnated within them. It is thought that MCS can be a consequence of prolonged exposure to such toxins. The specific tipping point, Julie believes, was the work she undertook to remove mothballs from a collection of ex-US Army blankets, sourced from eBay. She and collaborator Dolores Wilber had sourced the blankets for their 2004 installation Monuments, at the Chicago Cultural Center — a quiet protest against the US-led invasion of Iraq.

MCS is related to other chemical reactivity syndromes such as “Gulf War syndrome” and “sick building syndrome”. Environmental toxins overwhelm the body’s usual defences, destroy immunity, and drop us over a tolerance threshold — down a sheer cliff that is almost impossible to scramble back up.

When I visited Julie in the spring of 2006, she and her husband Andy Cook had recently moved away from the Chicago suburbs out into the small, farming community of Harvard, Illinois—to get away from the everyday toxicity of city air. On arriving at their house, I immediately had to change out of my own clothes and into a set of Andy’s, which had been washed in chemical-free detergents, in order to safely be in the same room as Julie.

When I next visited her, however, in July 2008, her condition had become much worse. Forced to flee even the Illinois countryside in the summer months, due to the aerial bombing of the surrounding fields with agrichemicals, Julie had taken refuge in the high altitude and clear desert air of eastern Arizona, near the small Mormon town of Snowflake.


Snowflake is named after its pioneer founders –Brother Snow and Brother Flake, of the Church of Jesus Christ of Latter Day Saints — who are commemmorated here outside the chruch. Located some 5,000 feet higher above sea level than Chicago, the area has become something of a haven for MCS sufferers, but to call it a “community” would be to overstretch the point, given people have to live in almost total isolation from others.

OLYMPUS DIGITAL CAMERALet me take you on a short journey from Snowflake itself, this carefully cultivated desert oasis of trim green lawns and perfect white picket fences, and take a trip out of town…


… there’s a horse for sale on the way out of town… and then quite a lot of land for sale too…
OLYMPUS DIGITAL CAMERA OLYMPUS DIGITAL CAMERAI saw no sign that anybody was actually building any property at the optimistically named Snowflake Heights – and this was before Lehmann Brothers collapsed later the same year.

OLYMPUS DIGITAL CAMERABut then, I saw no sign of Apaches either.

By the time I got out to where Julie was staying, one of the very few remaining signs of ‘civilization’ was this old post fence, cutting a razor-sharp line across the landscape to mark out the border between Apache County and Navajo County.

OLYMPUS DIGITAL CAMERA This line was no doubt drawn across a map, as a cartographic concept, before it ever existed on the ground.

On a map the line just continues, doggedly undeviating, for hundreds of miles.

OLYMPUS DIGITAL CAMERAHere’s the border fence again, as it passes the cabin Julie was staying in.

And if the fence is foreign body, carving up the land, I too was a foreign body — invading Julie’s very personal domestic space. A brief interior tour gives some idea of just how spartan her living conditions were — thanks to the need to rigorously avoid any fabrics or plastics that had not been thoroughly “off-gassed” in advance…

I had been carefully washing only in hemp soap for a couple of weeks before visiting – and had been refraining from using deodorant even in the American summer. But, given that I was staying in bed and breakfast accommodation in Snowflake (scented bedding…), and driving a rental car to get to her (pumped with the standard “air fresheners”…), my physical presence alone constituted a considerable health hazard for Julie. It took the best part of three days simply to get me into a condition where Julie could be around me. The daily ritual included repeatedly bathing in chemical-free soaps, on arrival from the B&B, dressing in more of Andy’s clothes, putting in contact lenses rather than wearing my plastic-framed glasses. Eventually, we agreed that I should shave off both my beard and my hair to get rid of trace shampoo scents which were making Julie dizzy and nauseous, and causing breathing difficulties.

Now, my problem in recording all this for you is that—like John Cage’s description, in his Lecture on Nothing, of the Arizona landscape itself—it is “almost too interesting.” As a story to be told, an anecdote to be shared with anyone from colleagues to cab drivers, I’ve discovered that Julie’s condition is fascinating to many: she’s a twenty-first century curiosity; a contemporary freak. Yet she is also a dear friend, and what she has to go through on a daily basis simply to survive is very far from “interesting”—it’s tediously, soul-crushingly banal. Endless rituals of cleansing foreign objects. Endless retreats to her bed with nausea and coughing. And the various remedies she has experimented with are unfortunately — rather like that borderline drawn on a map — merely optimistic attempts to control a set of conditions that are only partially understood and manifestly ungovernable.

There is no medicinal “map” by which MCS sufferers can orient themselves. Indeed, MCS remains a condition that medical authorities on both sides of the Atlantic still have trouble in recognising as an actual condition. Researchers can identify a group of symptoms—a syndrome—but they can’t identify with any confidence what causes it. And when somebody’s suffering cannot be explained, all too often we blame the victim — accusing them of neurotic, psychosomatic self-harm.


Well, I’m no a medical man, but I do know for sure that Julie Laffin is very far from being nuts. And it seems to me more than mere coincidence that so many people, from so many different countries and cultures, who do not know each other and have not been conferring, have come down with very similar conditions in the last twenty years or so.
And that during same period, the usage and diversity of synthetic chemicals in our everyday lives has continued to escalate exponentially.

We know now that the very gas we exhale—carbon dioxide—so innocuously “natural” by comparison—constitutes the single biggest threat to the future of life on this planet that we have ever faced. And yet we continue to treat as “normal” a landscape built of chemicals and concrete.

What if it turned out that people like Julie, far from being “interesting” curiosities, are candles in the wind — canaries in the coalmine?


I had gone out to see Julie as both a friend and an artistic collaborator – hoping that together we could create something that might be personally meaningful to us (if no-one else). But what we are able to make, in the time and conditions available, was at best fragmentary and unresolved.

It revolved around a little house on the prairie that Julie had come across, some distance from where she was staying, and still further out from Snowflake.

The stone house resonates with me for several reasons,” Julie writes:

1. having tolerable shelter/housing is the biggest issue confronting most with MCS.”

“2. my marriage felt like it was crumbling around me due to the stress my illness was causing at home.”

3. the materials used at stone house are actually pretty well tolerated because they are natural.”


4. there is something enduring about the stone house in spite of its state of ruination.”

Just imagine living in a space this small. In a site this remote. Arizona used to be very sparsely settled, because the conditions for comfortable human existence were simply not available. But that changed in the mid twentieth century, when the state’s population ballooned thanks to a new technological advance.

The settlement of the Midwest had depended first on new strategies in cartography, and then on the invention of the railroad. But the extensive settlement of Western, desert states like Arizona depended on air conditioning. Which, by the way, depended on the chemists’ development of fluorocarbons—an advance for which the ozone layer did not thank us.


I wonder, as the planet heats up, whether we might all need to get used to a reduction in living standards.
If we are to stand a snowflake’s chance in hell.


And I wonder what some future humans, on the other side of our hypothecated apocalypse, will make of the buildings we’ve left on the landscape.


What will those crumbling structures say about the fragile bodies that used to inhabit them?

hand on wood

Our poetry now is the realization that we possess nothing.”  (John Cage)

6 Responses to Snowflake

  1. Steve Bottoms says:

    PHOTO CREDITS for this picture essay belong to Steve Bottoms, Julie Laffin, and Julie Genser – who took the shots of Julie and Steve at the stone house. (Julie G, a friend of Julie L’s, is another MCS sufferer who was living in the Snowflake area at the time.)

    VIDEO CLIPS were all shot by Julie Laffin. (Thanks Jules!)

  2. Thank you for this story and photographs.

    “Our intention is to affirm this life, not to bring order out of chaos, nor to suggest improvements in creation, but simply to wake up to the very life we’re living, which is so excellent once one gets one’s mind and desires out of its way and lets it act of it’s own accord.

    “The highest purpose is to have no purpose at all. This puts one in accordance with nature, in her manner of operation.” –John Cage

  3. Susan says:

    Thank you so much to both of you for sharing your story. I am MCS for almost 30 years, not as severe as Julie or many in Snowflake so I share what I do from my perspective……rental cars have always been a big issue for me. For many years when I traveled I paid extra to rent a jeep so I could have better air flow to dilute the fresheners and deoderizers. I lived in Hawaii and would have to stand twenty feet back if a tourist in a rental car asked me a question.

    A couple years ago in a google search for rental cars and non toxic I discovered Hertz uses a natural biodegradable unscented line of products to clean their cars. The company is called OMI and if you google Hertz and OMI you can learn more about their including this as part of their sustainability program. Only caveat is a handful of very small branches such as Nogales in Arizona send their cars to the local car wash which contaminates those particular cars. but other small ones such as Sedona use the products and the employees behind the counter wash the cars and all the big hubs use the line. It is sold retail as Fresh Wave.

    Also it is a thought to ask some of the B and B to convert to unscented for a niche business. And they could advertise as such. From my conversations with the general public it is not just MCS people who are fragrance averse.

    Best regards Susan

  4. F says:


    And so sad.

    There is hope for those who live with these Invisible Diseases. Keep holding on.

  5. Jeny says:

    Very well-done and oddly beautiful.

  6. Debra Krause says:


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