Leslie's Website!

My MCS/EI Story

For those who don't know, MCS stands for Multiple Chemical Sensitivity; EI stands for Environmental Illness, of which MCS is a subset.  Those who suffer from it are often referred to as "canaries," as in, canary in the coal mine.  Since this website seems to function more and more as a way for me to network with and reach out to others with this illness, I've included the story of how it has affected my life, and how I'm learning to live with it.

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Ten years ago, while still in good health, I left a career in oceanographic research to a make a shift to the more people-oriented field of health care.  My nefarious plan was to become a geriatric nurse practitioner and beat the allopathic system from within by guiding old folks off of unnecessary drugs.  I had just started into a really cool program at Johns Hopkins when I had to drop out and have a rather complicated spinal fusion surgery to correct damage incurred in a mountaineering accident some years earlier. (I had been walking around with a broken back for years without knowing it, experiencing only minor pain despite--or perhaps because of--a very active lifestyle.  However, around the time I started working on my prerequisites for the program, the pain burgeoned. No x-rays had been taken in the ER after the fall; boy, was I surprised to find that I'd been walking around with a spine that looked like a train wreck, and was quite literally attached to my pelvis only by ligaments and scar tissue!  I tried to go to school anyway, because I wanted to take advantage of the one-time scholarship I'd been offered.  However, by the time I entered the program, the pain had become insuperable.)

The surgery was miraculous--I went from using a walker at age 39 to being able to climb, mountain bike, and dance again after a just a couple years of healing.  However, in the months following the fusion, I found myself spiraling into chemical sensitivity.  (I don't think this was brought on just from the surgery, but rather from a "perfect storm" of stress, pain, moldy house, toxic neighborhood, botched root canal, and copious pharmaceuticals--including steroid injections and gut-wrecking anti-inflammatories during the back pain days, six hours of anesthesia during the surgery itself, and months of broad-spectrum antibiotics post-op.)  Rather than returning to school as pIanned, I found myself living this strange new life in which I was literally bumping into walls, having nearly constant migraines, and struggling to pull a coherent thought together.  I was confused, scared, beyond broke (i.e., heavily in medical debt and completely out of savings), too sick to work, and unable to afford--or even locate--a sanctuary of any sort.  Without spouse or immediate family to help me out during that time when lack of a safe space was making me ever-spacier, I really wondered if I'd survive.

However, with the help of a few loyal friends who pitched in what they could, I squeaked by--living out of my van, or renting places and having to move out again a week later (seven times!), and meanwhile trying to learn what I could about MCS, so I could stop making myself sicker.  Finally, after about fourteen months or so, I found an house that didn't induce incessant migraines and other symptoms.  Thanks goodness it was small and therefore relatively affordable.  Once that cornerstone was in place, I was eventually able to summon the clarity to look for--and had the good luck to find--remunerative work that I could do from home.  Several months after rejoining the work force, I had the further good fortune of meeting my partner, Tony, who has an amazing set of priorities, and makes light of the myriad accommodations that life with an EI partner requires.  (Plus he's cute!) He sure makes my burden lighter, not to mention making a largely house- (and nature-) bound existence a whole lot more companionable and fun! 

One thing kind of led to another in this journey from desperation to (knock on wood) sustainability; hard work, luck, and other people's help all played a part.  But I feel strongly that having a safe space was the foundation that made improvements in both health and circumstances possible.  A safe house is the canary's sine qua non.

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In addition to the sadness of preventable suffering, it's a sad loss to the world of talent, energy, creativity and love, when people who are capable of being relatively clear-headed and productive are are forced to live in brain fog and constant crisis--all for want of a simple non-toxic shelter!  I know that all of us want to be able to contribute to the world and enrich the lives of those around us; how frustrating and sad when sometimes it's all we can do just to marshall our toxin-riddled neurons to wrestle over and over again with the problem of finding even a small safe corner of a world gone chemically crazy.

Though I still struggle with a base-line of constant neurological symptoms that worsen with exposure (blurry vision, nausea brain fog, migraines, etc.), things are much better than they were (in that I now have safe housing and better support structure)  and I am now in a position to at least start thinking about how to help others out of that pickle that I was in just a few years ago. 
  
Hmmm. How best to help people with Environmental Illness get to a place where they can start to heal, and have the energy to share their gifts with each other and the world? You guessed it--make affordable, safe housing!

For more on that, go to the Safe House Project page.