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.
Thursday, April 17, 2008
Tuesday, April 15, 2008
New Cleaning Products
There are several brands of safe cleaning products readily available from any natural foods store and even some of the grocery store chains (Safeway carries Green Planet). My favorites are Ecover for dish detergent (both machine and hand washing), and Biokleen concentrate for laundry detergent. (I've also used All Free & Clear and Kirkland Free and Clear, but don't like them as well.) None of these products have any added fragrance; they are good for the environment and as non-toxic as soaps can be. On top of that, they work as well as any chemically enhanced products I've ever used in the past.
In a newsletter I received yesterday there was an article about a new line of cleaning products now available from Clorox being marketed under the name of Green Works(TM). They are said to be made from natural, renewable resources (coconuts, lemon oils, etc.) and are biodegradable and 99% petrochemical free, with no phosphorus or bleach. They also use no aerosol and there has been no animal testing. Included in the line are bathroom cleaner, glass cleaner, toilet bowl cleaner, all-purpose cleaner and a dilutable cleaner.
Clorox intends to market these products in all the major grocery chains (even WalMart), pricing them from 30%-50% lower than other natural products currently available. And, in a real marketing coup, Clorox has gained the endorsement of the Sierra Club for this new product line.
I have my own reservations about buying anything, even green products, from a large corporation that puts toxic chemicals in most of its products. However, I understand the rationale of endorsing chemical-free products that are more likely to be purchased by the average consumer. I am happy to see "green" products become more popular. If a big corporation like Clorox wants to get on the healthy environment/living bandwagon, I'm all in favor.
[For more information about Green Works see: www. SierraClub.org/greenworks .]
In a newsletter I received yesterday there was an article about a new line of cleaning products now available from Clorox being marketed under the name of Green Works(TM). They are said to be made from natural, renewable resources (coconuts, lemon oils, etc.) and are biodegradable and 99% petrochemical free, with no phosphorus or bleach. They also use no aerosol and there has been no animal testing. Included in the line are bathroom cleaner, glass cleaner, toilet bowl cleaner, all-purpose cleaner and a dilutable cleaner.
Clorox intends to market these products in all the major grocery chains (even WalMart), pricing them from 30%-50% lower than other natural products currently available. And, in a real marketing coup, Clorox has gained the endorsement of the Sierra Club for this new product line.
I have my own reservations about buying anything, even green products, from a large corporation that puts toxic chemicals in most of its products. However, I understand the rationale of endorsing chemical-free products that are more likely to be purchased by the average consumer. I am happy to see "green" products become more popular. If a big corporation like Clorox wants to get on the healthy environment/living bandwagon, I'm all in favor.
[For more information about Green Works see: www. SierraClub.org/greenworks .]
Monday, April 14, 2008
Cleaning
When I was a newlywed (back in the early 70s), one of our neighbors had a painted sign in her kitchen that read, "My House is Clean Enough to Be Healthly and Dirty Enough to Be Happy". On my recent trip to Utah, I found this same sign on a shelf at the Deseret Industries thrift store. Of course, I HAD to buy it.
Cleaning--it's something we all have to do, but does anyone really enjoy it (other than my mother-in-law)? And, with chemical sensitivities, what cleaning products are safe to use? (And, if they aren't safe for me, are they safe for anyone?)
Cleaning is a broad topic (since every thing and every one needs cleaning at some time or another), so this is going to take more than one post. We all probably have some general rules we work by, so maybe that would be a good place to start. These "rules" are certainly not a matter of right and wrong--more like a personal "philosophy of cleaning".
My number one general rule of cleaning is: Clean as you go.
If I spill on the kitchen counter, I take a wet rag and clean it up immediately. While fixing a meal, I keep a sink full of hot soapy water so I can wash dishes as I dirty them and set the pans to soak while we are eating. Obedience to this basic rule saves me a lot of time, not to mention elbow grease. Also, if a spill is wiped up or a soiled blouse set to soak immediately, there's no need for strong chemical cleaners after a spill becomes a set-in stain.
A rule my mother used was: Take as few steps as possible.
As you clean one room (or one floor of the house), make a pile of things to be taken into another room (or upstairs) and take it all in one trip.
This leads to another rule: Sort. (aka, The Pile Method)
As you are working on a project that involves papers, or cleaning up clutter of any kind (i.e. toys), sort things (or papers) into piles and then put them away (or file them) all at once. Of course, if the piles on your desk ARE your filing system, that's another matter entirely.
And that leads to another rule which my sister lives by:
Touch every piece of paper only once.
As papers come onto your desk or into your home, handle each one only once. Take care of it, respond to it or dispose of it (recycle, of course). I personally find this rule hard to follow all the time, but it's a worthy goal and leads to my last rule:
Keep a clean rag in every room (including your office).
With a clean rag always at hand you can clean up the spills as they happen and dust any surface during those moments (and in my house they are just moments) that the piles are cleared and you can actually see the surfaces beneath.
So, how do you make cleaning simpler and reduce the need for chemicals? What is your Philosophy of Cleaning?
Cleaning--it's something we all have to do, but does anyone really enjoy it (other than my mother-in-law)? And, with chemical sensitivities, what cleaning products are safe to use? (And, if they aren't safe for me, are they safe for anyone?)
Cleaning is a broad topic (since every thing and every one needs cleaning at some time or another), so this is going to take more than one post. We all probably have some general rules we work by, so maybe that would be a good place to start. These "rules" are certainly not a matter of right and wrong--more like a personal "philosophy of cleaning".
My number one general rule of cleaning is: Clean as you go.
If I spill on the kitchen counter, I take a wet rag and clean it up immediately. While fixing a meal, I keep a sink full of hot soapy water so I can wash dishes as I dirty them and set the pans to soak while we are eating. Obedience to this basic rule saves me a lot of time, not to mention elbow grease. Also, if a spill is wiped up or a soiled blouse set to soak immediately, there's no need for strong chemical cleaners after a spill becomes a set-in stain.
A rule my mother used was: Take as few steps as possible.
As you clean one room (or one floor of the house), make a pile of things to be taken into another room (or upstairs) and take it all in one trip.
This leads to another rule: Sort. (aka, The Pile Method)
As you are working on a project that involves papers, or cleaning up clutter of any kind (i.e. toys), sort things (or papers) into piles and then put them away (or file them) all at once. Of course, if the piles on your desk ARE your filing system, that's another matter entirely.
And that leads to another rule which my sister lives by:
Touch every piece of paper only once.
As papers come onto your desk or into your home, handle each one only once. Take care of it, respond to it or dispose of it (recycle, of course). I personally find this rule hard to follow all the time, but it's a worthy goal and leads to my last rule:
Keep a clean rag in every room (including your office).
With a clean rag always at hand you can clean up the spills as they happen and dust any surface during those moments (and in my house they are just moments) that the piles are cleared and you can actually see the surfaces beneath.
So, how do you make cleaning simpler and reduce the need for chemicals? What is your Philosophy of Cleaning?
Sunday, April 13, 2008
Family
Living with chronic illness and/or disability is a daily struggle. Though some days are better than others, every day has its challenges, including feelings of isolation, rejection and depression. Sundays can be especially difficult for me. We all need people around us, to build us up and help us see our own true worth, but never more so than when we are dealing with illness, whether it's chemical sensitivities or some other chronic condition. I would rather not have MCS (now that's an understatement), but I don't have to deal with it alone, because I have FAMILY.
Today is my middle daughter Sharon's 29th birthday (Happy Birthday, Sharon!). In a comment on a previous post, Sharon says I am her hero. But that's backwards, for she is MY hero, as are all my children (and their spouses), grandchildren and my husband. I may have to deal with chronic illness, but they have to deal with me--with my ups and downs, my rantings and ravings, and always, the unpredictability of my condition. Through it all, they are my advocates with my adversaries (anyone or anything that violates my airspace). They lift me up when I am down and cheer me on when I am hopeful. And, when things seem most hopeless, they make me laugh and forget, even for just a moment, that life isn't always fair.
I know that not everyone has such a family to support them. We're told to turn to faith and our church community. But with MCS, it's hard to be part of a church community, and often other members are not very understanding. That's why we need to reach out to each other. The Internet is not the same as sitting in a church meeting surrounded by people who love and care for you, but, in our own way, we can establish community, even laugh and cry together, through this modern medium.
When my daughter Sharon was a little girl and she didn't understand something, she would shrug her shoulders and say, "It's magic!" I don't understand how computers and the Internet work, but I know that those who read and respond to what I write are real people, with real problems, real solutions, real feelings and real love. Okay, so I'm getting a little sappy here. But, you get the message. Family is more than just a group of people who are related to you by birth. We can be, for each other, the family we need. It's magic.
Today is my middle daughter Sharon's 29th birthday (Happy Birthday, Sharon!). In a comment on a previous post, Sharon says I am her hero. But that's backwards, for she is MY hero, as are all my children (and their spouses), grandchildren and my husband. I may have to deal with chronic illness, but they have to deal with me--with my ups and downs, my rantings and ravings, and always, the unpredictability of my condition. Through it all, they are my advocates with my adversaries (anyone or anything that violates my airspace). They lift me up when I am down and cheer me on when I am hopeful. And, when things seem most hopeless, they make me laugh and forget, even for just a moment, that life isn't always fair.
I know that not everyone has such a family to support them. We're told to turn to faith and our church community. But with MCS, it's hard to be part of a church community, and often other members are not very understanding. That's why we need to reach out to each other. The Internet is not the same as sitting in a church meeting surrounded by people who love and care for you, but, in our own way, we can establish community, even laugh and cry together, through this modern medium.
When my daughter Sharon was a little girl and she didn't understand something, she would shrug her shoulders and say, "It's magic!" I don't understand how computers and the Internet work, but I know that those who read and respond to what I write are real people, with real problems, real solutions, real feelings and real love. Okay, so I'm getting a little sappy here. But, you get the message. Family is more than just a group of people who are related to you by birth. We can be, for each other, the family we need. It's magic.
Friday, April 11, 2008
"Fragrance Trespass"
MCS America (see link at left) publishes a monthly online newsletter. (If you go onto their site you can sign up to have the newsletter emailed to you each month.) In April they included an article about a Minnesota legislative proposal for a fragrance-free educational campaign in Minneapolis schools. They use the term "fragrance trespass" which they define as "the involuntary deposition of toxic or potentially toxic fragrance chemicals within a human body" which usually happens when airspace is shared with others who use or wear fragrances.
I really like this term, "fragrance trespass." Just like cigarette smoke, scented personal care products contaminate the clothing, hair, skin & eyes of those who don't wear them. The fragrance "trespasses" into public airspace, and since we all have to breathe, we are all contaminated by it.
The article goes on to say that fragrances are recognized as "a major source of volatile organic compounds that contain many of the same cancer-causing toxicants that are in tobacco, wood smoke and vehicle exhaust..." Included are lists of these chemicals and the specific harm they can cause, particularly phthalates, which are implicated in reproductive defects.
Children are required to attend school. It should be a safe place for them. So it makes sense to protect them from chemicals in the air they breathe. Actually, it makes sense to protect the air we all breathe, but we have to be able to explain the problem so people will understand it and want to make personal changes. Good terminology and accurate information will help.
I really like this term, "fragrance trespass." Just like cigarette smoke, scented personal care products contaminate the clothing, hair, skin & eyes of those who don't wear them. The fragrance "trespasses" into public airspace, and since we all have to breathe, we are all contaminated by it.
The article goes on to say that fragrances are recognized as "a major source of volatile organic compounds that contain many of the same cancer-causing toxicants that are in tobacco, wood smoke and vehicle exhaust..." Included are lists of these chemicals and the specific harm they can cause, particularly phthalates, which are implicated in reproductive defects.
Children are required to attend school. It should be a safe place for them. So it makes sense to protect them from chemicals in the air they breathe. Actually, it makes sense to protect the air we all breathe, but we have to be able to explain the problem so people will understand it and want to make personal changes. Good terminology and accurate information will help.
Thursday, April 10, 2008
Getting the word out
Well, I'm really sticking my neck out now (at least for me), trying to get the word out about this blog and about MCS.
I sent an email to the editor of MormonTimes (a new online section of the Deseret News), suggesting an article about MCS/EI. I'll post the response (if I get one).
I have also emailed just about everyone I know about this blog.
If anyone reading this knows of anyone who has MCS or is associated with someone with MCS, please refer them to this blog. I know there is a large community of MCS sufferers in the LDS church, and in other churches as well, who would benefit from this type of online support.
Let me be clear that this is not a place to gripe about the LDS Church (or any other church, for that matter). I am seeking positive ways to educate and support church members so that we can all feel and be a part of the church community.
I sent an email to the editor of MormonTimes (a new online section of the Deseret News), suggesting an article about MCS/EI. I'll post the response (if I get one).
I have also emailed just about everyone I know about this blog.
If anyone reading this knows of anyone who has MCS or is associated with someone with MCS, please refer them to this blog. I know there is a large community of MCS sufferers in the LDS church, and in other churches as well, who would benefit from this type of online support.
Let me be clear that this is not a place to gripe about the LDS Church (or any other church, for that matter). I am seeking positive ways to educate and support church members so that we can all feel and be a part of the church community.
Wednesday, April 9, 2008
I returned home Sunday night from ten days in Utah doing research on family stories, visiting with family and attending LDS General Conference. Yes, I really did attend two Conference sessions. When we attended the conference last October, I had to spend most of the session out in the reception area sitting in a corner by myself, so I was a little leery about trying to go again. However, after finding our seats, I went out into the reception area and waited (as far away from people as possible) until just a couple of minutes before the meeting was to begin. Then I went back to my seat and did pretty well for the rest of the session. The Conference Center has a good ventilation system, and as long as I wasn't sitting too close to someone wearing perfume, I handled it pretty well. The biggest problem is during the hour before the meeting begins, when everyone is shuffling in and out.
We attended both the Saturday afternoon session and the Sunday afternoon session. On Sunday I was stopped by a Conference Center volunteer as I was leaving (after we initially found our seats). When I explained why I needed to go out, she was REALLY sympathetic. She told me that all the volunteers are told in their training that they are NOT to wear anything scented while in the Conference Center. She seemed to know quite a bit about MCS, so there must be some good information given in their training. A couple of other volunteers also stopped to talk to me while I was waiting for the meeting to begin, and they told me the same thing. One of them told me that they had had an incident on Saturday in which a man in attendance at the conference had a respiratory reaction to something severe enough to call in the paramedics.
Then, after I had been out there for about forty-five minutes, the first volunteer who had spoken with me came out to look for me and make sure I was okay. This whole experience was so encouraging, to know that someone understands the serious problem of chemical sensitivities and is training these volunteers as well. I've been told that it takes about 1000 volunteers to handle the two days of General Conference. That's a goodly number of people to become educated about MCS.
Another encouraging experience I had in Utah happened when I went to do some historical research in the Perry Special Collections at the HBL Library at BYU. Because of the sensitive nature of the materials there, you have to go into a small enclosed area to use them. You fill out a request sheet for what you want, and it is passed to you through a window. The first person to help me was a young woman who was wearing some strong perfume. When I told here that I would have to keep some distance from her because of her perfume, she apologized and got someone else to help me. She was not actually in the room where I was working, so this made a big difference.
When I went into the Utah State Historical Research Center in Salt Lake City to do some research, I had no problem at all. These historical research libraries are kept clean and free of dust (probably with air filtration systems) and no chemicals are used, in order to protect the old books and papers. I had thought that there might be some mold problems with the old books(since used bookstores can be a real problem for me), but measures are taken to protect the books from mold. If only people were as protected as were these old books.
We attended both the Saturday afternoon session and the Sunday afternoon session. On Sunday I was stopped by a Conference Center volunteer as I was leaving (after we initially found our seats). When I explained why I needed to go out, she was REALLY sympathetic. She told me that all the volunteers are told in their training that they are NOT to wear anything scented while in the Conference Center. She seemed to know quite a bit about MCS, so there must be some good information given in their training. A couple of other volunteers also stopped to talk to me while I was waiting for the meeting to begin, and they told me the same thing. One of them told me that they had had an incident on Saturday in which a man in attendance at the conference had a respiratory reaction to something severe enough to call in the paramedics.
Then, after I had been out there for about forty-five minutes, the first volunteer who had spoken with me came out to look for me and make sure I was okay. This whole experience was so encouraging, to know that someone understands the serious problem of chemical sensitivities and is training these volunteers as well. I've been told that it takes about 1000 volunteers to handle the two days of General Conference. That's a goodly number of people to become educated about MCS.
Another encouraging experience I had in Utah happened when I went to do some historical research in the Perry Special Collections at the HBL Library at BYU. Because of the sensitive nature of the materials there, you have to go into a small enclosed area to use them. You fill out a request sheet for what you want, and it is passed to you through a window. The first person to help me was a young woman who was wearing some strong perfume. When I told here that I would have to keep some distance from her because of her perfume, she apologized and got someone else to help me. She was not actually in the room where I was working, so this made a big difference.
When I went into the Utah State Historical Research Center in Salt Lake City to do some research, I had no problem at all. These historical research libraries are kept clean and free of dust (probably with air filtration systems) and no chemicals are used, in order to protect the old books and papers. I had thought that there might be some mold problems with the old books(since used bookstores can be a real problem for me), but measures are taken to protect the books from mold. If only people were as protected as were these old books.
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