Making Salt

By Lucinda Hodges

Mahatma Gandhi once  walked 240 miles to make salt at the edge of the Arabian Sea. It was an act of treason. A way to subvert British rule. It was classic civil disobedience: a simple, deliberate act of life sustaining labor designed to thwart an unjust rule of law.

Every person requires salt to live and yet it was illegal in 1930's India for any Indian to harvest salt from the sea. Salt was taxed and sold only by the British. By controlling a necessity of life the British were able to exert control over the majority they ruled.

Gandhi understood the power of simplicity over the power of tyranny. He wielded that power with grace and precision. He made salt. He spun his own cloth. He founded an ashram. He walked his talk, and ruled a nation. There was power in reclaiming HIS right, to sustain HIS life, in HIS own way.

As almost any MCS afflicted person will tell you the very first thing we lose with this disease is control. The loss of power often follows the loss of control, and if we lose the ability to work, medical bills mount as assets dwindle. Toxic homes push the most severely effected of us outside to live alone in cars, or worse. It ain't pretty and yet somehow against all odds most of us -- not all -- but most of us, survive to eventually find some semblance of stability in our lives.

So, how do we do it? How do we fight back and reclaim our lives? There are as many answers to that question as there are people with MCS. We each find our own chosen way.

As you will discover in this inaugural issue of Pariah, An MCS Journal there is a bit of Mahatma Gandhi in everyone of us. Gandhi made salt. Kathy Fitzpatrick, a guiding force and co-creator of this newsletter makes her own homegrown medicine. Some of you make soap, create jewelry, gaze at the stars, carve wood, write poems, practice photography, quilt, paint, build websites, write legal briefs, or simply listen and provide vital emotional support to fellow MCS'ers. 

These are all equivalent acts of simplicity, creativity,  frugality and subversion. One act no greater than the other. Each as potentially empowering as The 1930 Salt Satyagraha, which began on March 12th, and ended at the Arabian Sea on April 6th, 1930. A spring walk worth remembering.

Pariah

By Kathy Fitzpatrick

As a young girl i was a member of the Saint Agnes Guild at Trinity Episcopal Church. Each Thursday we wrapped bandages to send off to a Leper Colony in Hawaii. As we wrapped, old Mrs. Clark read us a chapter of O Ye Jigs and Juleps. Each week she reminded us of the importance of our work and how much the Leper's appreciated it. She explained the Lepers lived all by themselves and told us people were afraid of them because they believed leprosy was contagious. This was my first introduction to the word "pariah." Sitting there, dutifully wrapping bandages, i never dreamed i'd be a MCS pariah and feel as though my life, as i once knew it, had been erased.

With this illness comes great loss, isolation and lack of understanding. The terrain changes as we maneuver around chemical landmines, people's "forgetfulness" and abliest language. Pariah. Some in the MCS community cringe at the word, are even offended it by it. I have chosen to embrace it, to turn it inside out and find the beauty. As much as this illness has taken away it has also given. The lessons learned have not been easy and the journey is far from over. My world is decidedly more narrow, slower and more peaceful. I'm no longer caught like a hamster in a wheel and there is freedom in that. My life is still rich and full. There is still laugher, joy and beauty. Pariah, a 21st century canary. Of course there are also tears, sadness and the ugliness of disregard. For most people we are too much trouble to be around. My parents home is toxic so i can no longer go "home." But even if it were safe, my mother doesn't feel it's right to ask my siblings to go without their chemicals. My own brother felt his use of deodorant more important than forgoing it for one day to come and celebrate my new marriage. And the last time i visited a friend i nearly passed out on her toilet from all the chemicals in the room and haven't heard from her since. [she kept saying "i'm afraid i'm going to kill you."] So i am left out, an outsider, a pariah. Navigating this illness is no easy feat. You need a strong sense of self to survive.

Far too many in our community have been killed because of chemical injury. But the deaths have typically been the result of secondary complications from Chromic Fatigue, Fibromyalgia, end-organ failure, cancer, MS, Parkinsons Gulf War Syndrome, neurological, cardiovascular or respiratory disorders along with PTSD and a host of other extremely serious health issues from repeated chemical assaults. 12% of those afflicted with MCS will succumb to suicide. Living within the confines of this illness it's not hard to understand why. Like many before us who bore the brunt of a new DISease [CFS, Fibromyalgia, etc] many in our community have been denied disability. Judges, without proper information and medically untrained, make these decisions. Fortunately, more and more doctors are becoming increasingly aware that yes, this is indeed, a serious illness affecting 16% of the population. [Diabetics affect 6%.] Not only are we Pariahs and canaries but trail blazers as well! Many, like myself, have no health insurance or the financial resources needed to seek proper, regular medical treatment from an environmental doctor. Even with insurance most are denied access to the kind of care they need.

Which brings me back to Pariah, An MCS Journal. It is my hope this newsletter will empower others to take their health into their own hands. Time honored healing is our right, it is subversive, radical, frugal, and often growing right outside our own back doors, no insurance required. I hope you will be inspired to try a daily infusion of stinging nettles, plant a few of your own seeds, clear out some clutter or do nothing at all.