Thursday, April 17, 2008

Celia's Experience

The following post was written by my friend Celia, who also has MCS. Though we live in different parts of the country and only know each other through email, we have much in common. This is her experience with MCS in her church community.

I denied MCS for some time; I was convinced that I could continue to go everywhere and do everything. I think I believed that I could have “enough faith” to do that. Secretly I was a little bit annoyed with another woman in my stake who was staying home and being careful as to who came into her home.

The thing which challenged me was what I heard about her. I was also a home educator, so people I met would ask me about this other sister, implying that they felt “offended” because this good woman who homeschooled her children and whose husband was in our stake presidency wasn’t attending social functions anymore. Women who had been mutual friends would comment to me, “_____has just dropped out; I can’t imagine what is wrong with her” in impatient , even offended, tones. And so I determined that I wouldn’t let any of these people know that I had similar problems, just not, yet, as severe. I was anxious to make sure nobody ever talked about me in that way. This other sister was more forward and outspoken than I am or ever have been, and I sensed that she was being judged for having MCS. I thought if I kept my MCS private I wouldn’t experience that, but I was wrong.

In time, I did become worse. I hadn’t gone to see a physician, because I had quietly researched and discovered that there were no doctors in our community who specialized in MCS. I called the sister about whom there had been critical comments, and her own husband was a physician who had seen her reactions and knew they were “real”. He wasn’t able to find anyone he felt was satisfactory to help his wife, so he began to do research on MCS himself. I felt incredibly blessed to have this resource, and I was ashamed that I had listened to criticism about this good sister without speaking up. Interestingly enough, a medical doctor had come up with no more information about how to help people with MCS than my own husband and myself. But they were still a tremendous support, and I think they were pleased to find that we had solved many of the problems MCS people have in similar ways. It was a mutually rewarding discovery. My father had had an unusual sensitivity to hemp, such as is found in many LDS church wallcoverings, and my father was an environmental scientist, so I was familiar with some of the research being done about sensitivity. As to the criticism the other sister drew from former church associates, I think the difference with this woman and myself is that she had been much more involved than I had ever been. I considered myself “active”, but I wasn’t a visible stake leader; I was more the meetinghouse librarian type; she was the stake Young Women president type, and this other sister had been involved in musical productions as well. So her suddenly “not being there anymore” was very apparent and disturbed people.

Sister _______ and I were able to do much to make our living environments healthier and to help our families understand what MCS was and how they could help us. Our biggest challenge and one that we found harder to surmount was our church participation.

What is different about having MCS as a Latter-day Saint is that we place a great importance on community. I think Catherine has already said that, but I would add that we often call our wards “extensions of our families”, so when we don’t participate or can’t participate, we are seen as rejecting our wards and their members. In other faiths worship is sometimes more anonymous than it is among the LDS. When we are involved in an LDS congregation we are more visible. When anything takes us away from that, people begin to question, without even realizing that they are doing it, the “worthiness” or adequacy of those who are no longer participating. Fellow church members want to help, but when many people don’t accept the validity of MCS their methods of “helping” tend to be critical—more along the lines of “fixing the person with MCS”, implying that the person with MCS has psychological problems (something said by a physician in my present ward) or being annoyed.

My personal observation after years of studying culture and the environment is that many people in American society believe that chemicals, while maybe not being as “good” as they were once seen (a vehicle for progress in the 1940s and 1950s) are not “bad”, so when someone has a problem with chemicals they are attacking, almost, part of the value system of many Americans. There is an idea that chemicals have allowed us to achieve the state of success of which our nation and culture boasts, so to have a “problem” with chemicals is tantamount to being iconoclastic—almost. “How can you have a problem with chemicals? I don’t have a problem with chemicals!” Or, “Nobody in my family has a problem with chemicals, and the only people I know who have tend to be cranky people.” I did hear that quite a bit, and now I understand why. You can be kind for a long time, but eventually, at some point, you may lose patience with someone who is being particularly insensitive. Even if you do not lose patience, your lack of participation is seen as cranky, and you may be considered to be a “crank”. Or by staying away you are seen as “rude”, which is what happened to my friend in our former stake.

One of the things that I discovered when I first began to research MCS was that people would tell me, “So and so has a mother with that; you should call him or her”—and when I would call that person and ask about the relative with MCS, he or she would say, “oh, it got to the point where they could no longer leave the home, and everything made him/her ill”—and I would, naively, ask, “How is he/she doing now?”—only to hear, “well, it was such a blessing, but he or she did pass away”—

One person whose mother-in-law had suffered made that comment and then very quickly said, “oh, you don’t have that problem, do you? I am sorry.” I almost wanted to laugh; I could see the humor in it, but it was also rather disheartening. I remember that when I hung up the phone I had a sense of hopelessness.

I am hopeful, however. I see things that I did not and could not see before MCS. I believe I see what really matters. My personal testimony of Jesus Christ is probably stronger than it ever was in my pre-MCS days. I do feel that Father in Heaven watches over me lovingly, and I can see that He sends loving people into my life also.

1 comment:

SharonB said...

Wonderful post. I do not personally have MCS but I don't eat any gluten or sugar and your experiences struck a chord with me. It has taken me a long time to be able to open up about my health choices and the reasons behind them. Thanks so much for sharing your story!