Chapter 3

How Lives Are Affected By MCS

chapter_3 Sometimes there is a silver lining in hardship. Laurie Gordon and her son Arthur lived with the Shens for a year while they sought safe housing. See Arthur's statement below and on page 40 of the book.

This chapter reviews the research from my lab and other sources on the life impacts of having MCS, quoting first hand accounts from participants.

Excerpt from p. 39-40:

Housing

People try to avoid chemical exposures by replacing household items, such as carpets, formaldehyde board, plastics, and other items. But many are unable to afford these replacements. Consequently, some people reported either continuing to live in unsafe conditions, or spending their life savings redoing their homes and purchasing air purifiers or other necessities. People spent an average of $28,000 to clean up their homes, and only two-fifths were living in homes rated as safe. Some respondents reported being unable to tolerate any traditional housing due to chemicals used in construction, and they lived in very unusual conditions.

For example, one respondent had lived in her horse trailer for a year. Others described being homeless or living in their cars, in RVs, in one purified room in their house, or in tents. Many did stints on their friends’ porches or in the homes of their parents. In Phase II, two-thirds of the participants had lived in highly unusual conditions at some point to avoid chemical exposures. It seems MCS brings out the survival instinct and forces one to be unusually resourceful.

“I live in a tent all summer (May to November). I can tolerate [temperatures] to twenty degrees, so [I] stay as long as possible. In winter, I have [a] room that only has a bed, wood floors, and no heat for my safe room.” —Forty-seven-year-old man with MCS

Ten-year-old Arthur Majester wrote about what it was like for him after his mother developed MCS and they had to live with friends for a year while she attempted to recover enough to find and test housing:

“Have you ever wondered what it would be like to be homeless? My mom bought a house in East Lansing, so I could go to Pinecrest Elementary School. The second day we lived in the house she went to the hospital. The doctors told her she was allergic to the house and could not return. The house had mold. You couldn’t smell it; the house was new. But it was hidden behind the walls.

We lived with a Chinese family that were friends of ours. They were really nice and we learned a lot about their culture, holidays, and food. We ate Chinese food every night, which I didn’t always like. They are very nice people, to let my mom and I live with them for a year. I liked playing with their dog too.

My mom went to many apartments and houses in that year before she could find us a house she didn’t get sick in. After living in the house with the mold my mom became allergic and sensitive to mold, but also chemicals. This made it hard to find a home. New carpet and paint would make her sick.

She was sick in the hospital a lot. That was scary to me. But I always felt like part of our friend’s family and that made it better. We are still good friends with the family we lived with and in many ways it was a fun year. But I never want to be homeless again.”

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