Casualties of Progress:
Personal Histories from the Chemically Sensitive

by Alison Johnson

With a Foreword by Gunnar Heuser, M.D., Ph.D.

Cumberland Press
Brunswick, Maine
1999     276 pages

$14.99
(Or order by mail)


This collection contains the personal histories of 57 people with MCS. One story comes from a nurse who won a case with her state Human Rights Commission concerning a series of e-mails that fellow employees sent each other to plan to all wear heavy amounts of perfume on a designated day and to spray perfume in the bathroom and stairway she would use.


 
"The book is next to impossible to put down. These chronicles of courage, caring, injustice, suffering, persistence, and triumph are told in such depth and with such honesty that their truth is unmistakable. They are truly tales to open eyes and hearts."
  Lynn Lawson, Author, Staying Well in a Toxic World


Selected passages from the stories:

I remember when I met my new attorney in December 1998, I asked him what they pay someone who loses a limb on the job. He told me. Then I asked him what they do for someone with an amputated life.
-Lizbeth, Computer Systems Engineer
 
Just last week I started to read a magazine, and it turned out it had a perfume strip in it. I got nauseated immediately and got a headache; I felt so sick I had to go to bed. The next morning I was still nauseated and was wheezing, so I had to go to the hospital. They kept me there a couple of days.
-Terry, ex-marine with Gulf War syndrome
 
I can no longer keep a cherished dog or go to a concert or joyfully join in fun and games. I haven’t done much of anything in four and a half years except lie around a lot and try any medication, treatment, or protocol that holds promise. This is a reality understood only by those who have experienced it. Those who have no such experience may or may not be sympathetic, but by and large they have their doubts. I know these doubts because when I practiced law I had a client whose case rested on whether she really suffered from chronic fatigue syndrome. I knew she was suffering, but at the same time I always felt she could pull out of it if only she would tug harder at those proverbial bootstraps. Believe me, bootstrap yanking doesn’t work. I’ve tugged at everything I could get my hands on, and such tugging often only makes matters worse.
-Rand, lawyer
 
I once read a study that said the average American spends 98% of the day inside. I’ve reversed that proportion and spend 98% of my time outdoors, sleeping on my patio and cooking there on a hot plate. I use my house as an oversized closet, storage area, and bathroom. I’ve been basically living outdoors for twenty years now.  I have been told that early retirement is the American dream. Early retirement because of disability and a chronic, progressive illness is nothing but a bad dream, involving the loss of family, home, career, friends, mobility, income, and one’s health–almost everything one holds precious.
-John, college professor

 

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Alison Johnson and mail to:
Alison Johnson
4 Wren Drive
Topsham, ME 04086