by Julie Laffin © 2009

Winged Dead Cyprus Tree
© 2008 Julie Laffin. All rights reserved.

Your Fluid Body is Frozen

My doctor (one of them) says my entire left side is jammed. It’s like shrink-wrapped plastic wrap, tight and brittle but it should be like one large, flowing, unified teardrop. It should have coherence and flexibility and it should breathe. I guess this assessment could explain some things: why I feel like I’m constantly falling to the left, why when I get exposed to synthetic fragrances my face goes numb on the left side and not the right, why my left leg and foot often lose all sensation from diesel exhaust exposures no matter how small, why my left arm and leg will start to tremor spontaneously, why my left eye twitches and spasms randomly, why there is constant pain in my left foot and a varicose vein in my left leg and why I have a mass on the left side of my neck at the carotid artery and am constantly clenching the left side of my jaw. My fluid body on that whole side is frozen. It may in fact, at this very moment, be trying to launch a rebellion.

Going after Stealth Pathogens
© 2008 Julie Laffin. All rights reserved.

Keep Your Eyes Off the Snake

Suppose I take a square of beautiful blue paper and tape it to the wall. Then I take a rubber snake and hang it in front of that beautiful blue square. The goal is to focus on the blue area no matter what the snake is doing. That’s my assignment. If someone pulls on the snake I should be still, stay with the blue area and disregard the turbulent and frenetic energy of the snake. She says to me, “Don’t be seduced by the chaos. The place of healing is not chaotic. Try to find the quiet, still place of gratitude.” I try and try and try. Sometimes I can actually muster it.

Most days, finding that place is not so easy and I feel like I’m being forced to watch my health slip away, day by day, moment by moment. It’s become like watching a movie, a slow torturous one at that. Not being seduced by the chaos was never my forte and now that my severe environmental illness is so easily triggered, I have the challenge of not getting emotionally and physically flattened by bizarre physical, sometimes unrelenting, reactions.

Last year I was diagnosed with advanced, neurological Lyme Disease and actually relished in this diagnosis. It seemed there was finally an explanation and possibly even a treatment or cure for a confusing, strange, and prolonged (over four years) lapse of health. My relief was short-lived when I found out the hard way, that because I am now so severely chemically intolerant, I cannot take long term antibiotics. With each trial of antibiotics I lost even greater chunks of the health I had left. So far, I have not been able to recover these long lost parts.

My Own Worst Enemy: Safe House Bathroom, Snowflake, AZ
© 2008 Julie Laffin

The Monastic Life

She asked me if I could see any possible good in being forced away from society, being asked to give up social interaction and professional goals. But the list of losses is long: income and career, relationships, identity, artistic accomplishments, time with family, meeting my newborn nieces and nephews, celebrating holidays, simple daily pleasures, feeling good, freedom to move about in the world without getting severely ill. And faith. It’s been hard letting go of faith in the process of life and the belief that when presented with options most people will do the right thing. I had to give up the notion that most people would rather go without their perfume than forgo spending time with me and that if they knew their use of lawn chemicals could send me to the hospital (an experience itself that could now jeopardize my life) they would find another solution for killing their weeds that did not involve nuking their lawns with agent orange delivered via high pressure hoses. In fairness, there are some that have. But I believe there is a special place in hell for the falsely pious in our midst that have no actual concept of brotherly love or compassion for the suffering of others. Since becoming disabled I have discovered a fear and loathing of those who are different I could never have previously understood had I not experienced it, had I not felt it being directed at me.

Which bring me to one more loss; loss of respect for people who would rather write me off as a neurotic, headcase than learn about a growing problem that afflicts a huge number of people worldwide.

Will any good come of having to move away from Chicago and learn a new way of being with my husband who has now been granted the thankless job of becoming my primary caretaker? Perhaps. I’ve learned I married a man with depth of character not easily matched by his peers. My love for my husband has solidified and expanded. In sickness and in health, gratefully he took it seriously. Is there anything good that will come of living in isolation and shedding all earthly desires, ambitions or aspirations? Hmmmm, let’s see…I’m saving a lot of money (I no longer have) on dressing for success, dining out and foreign travel. And I never have to attend baby showers anymore.

On the Table

I went to see her for the first time wearing a gas mask and carrying a charcoal impregnated blanket to cover the table to keep myself from picking up any leftover chemicals on the vinyl covered exam table. But the mask had the wrong kind of filter (particle not VOC) and I had to leave because there was residual fragrance in the room. The silicone material of the gas mask itself makes me sick, but not as sick as fragrance or cleaning solvent residues. Pick your poison. I came for her to lay her hands on me and manipulate and heal me but I could not tolerate being in her office or the building. I could smell the air freshener drifting in from an adjacent office and the lingering scent of cleaning supplies. But she understands. She knows I’m not making it up. She knows I become easily impaired by things no one else will even notice. Twenty years ago she was like me. During medical school she was poisoned by formaldehyde and it took her a long time to recover. This gives me hope. There are so few stories of recovery in my little understood universe.

On the Floor

I have assignments to do at home. She had me get pillows and blankets and put them on my bedroom floor and lie down. Then she talked me through “the constant resting position.” She said there is usually a position most people can assume which allows them to find a place of non-pain. It’s a delicate balance sometimes struck by moving the foot an inch to the left or raising the neck up slightly to eliminate the curve it wants to otherwise habitually assume. I find it. Later I apply ice and heat. I feel a sense of hope and remember what it’s like to be happy. I remember the good people in my life and all they do for me and how much they care.

You Are Going to Get Better

She doesn’t seem like someone who will give up on me easily. Gratefully, there are no drugs to take and she has not tried to sell me a hefty bag full of herbs and vitamin supplements. She did suggest I purchase some magnesium from the health food store for relaxing the muscles on my shrink-wrapped left side and for warding off migraines. My homework for next week is to Google the “Alexander Technique” and check out the “Feldenkrais Method.” It seems daunting since the simplest of yoga poses can throw my muscles into painful spasms for hours. (I should have just tried the gentle, vertical poses as my friend Lisa suggested). After being on this earth for almost fifty years, I am having to learn a new way of being in my body. Instead of me commanding it, it will be instructing me. Instead of whipping it into shape at the gym, I am now forced to bow to its whims and learn its (seemingly foreign) language. If I ever get to the other side of this illness, the cost will be complete and utter surrender. The reward will be absolute transformation.

Seeking the Root of the Problem
© 2008 Julie Laffin. All rights reserved.

The Elusive Obvious

I’ve spent the past four and a half years scanning my past and culling for clues as to why I developed this condition. I have devoured article after article on the internet, consulted with and received treatment from the best environmental illness doctors in the country. I’ve listened attentively in chat rooms to the vivid details of other people’s illnesses hoping to glean any tiny insight about what happened to many of us and how I might apply the lessons they have learned to my own situation and extend that information and hope to others. Here are the facts: I have a positive Western Blot for Lyme Disease, my health began to deteriorate rapidly after washing and drying several military blankets laced with mothballs in my art studio and a subsequent exposure to a potent odor neutralizer in a hotel soon after.

End of the Long Wash, Apache County, AZ
© 2008 Julie Laffin. All rights reserved.

The Long Road Back

My husband tells me I’m a fighter and that I’m stronger than I think. Some days I believe him but on others I anaesthetize myself with fantasies of the next life or the past…the lovely, elusive and healthy past. Just recently I’ve been able to visualize a future in which I’m well and happy. Andy is there beside me. I sit myself down now each day and require myself to dwell in this mindset. There are gaping, dark holes in this newly evolving moving picture and I admit I can’t see the roadmap in much detail. When I think I have the blueprint firmly fixed, precisely nailed down, it slips away. But I can see, feel and even revel in the promise of having arrived at the destination. There are sweet moments now where I can taste and smell transcendence. Today, I hunker down, set my sights on the blue square and resist the temptation of giving what’s left of my ravaged self and dysfunctional immune system to the snake. Only recently, for the first time in four years I’m able to imagine a life for myself in which I’ve eclipsed my current state of being, a new commitment that has become my daily practice.

Julie Laffin is a Chicago-based performance artist currently working on transforming her work to embrace and transcend her health challenges. You can see more of her work here: julielaffin.com