Saturday, August 25, 2012

A Challenge that Hits Home

I celebrated a birthday this week the same way I celebrated it last year -- hanging around outside my house, unable to enter it without experiencing severe pain and other health symptoms. The state of my home and my relationship with it has varied throughout the year. Until about a month ago I had made enough progress that I was able to be inside for most of the day. I've been unable to sleep an entire night inside, however, for a solid 12 months now. I've been sleeping in my campervan in the driveway, during weather that has varied from single digits to over 100 degrees.

My experience is far from unique. Semi-homelessness or full homelessness is truly a crisis within the MCS and mold-injured community. Homes are not generally built and maintained with human health in mind, and even when they are fairly toxin-free, it only takes one renovation, leak, new neighbor, or other change to make them unlivable for those with serious sensitivities. People who are already sick have a very hard time making needed changes to a home without making themselves sicker, but relying on others is also problematic. It is very difficult for those without sensitivities to understand the full impact of choices they make regarding products and methods of renovation and clean-up.

Just within the last few weeks I have had contact with friends in the following situations:

  • Someone who had been living on a porch is now living in her car.

  • A couple who had been carefully building a non-toxic home had to leave it when one building product proved to be more toxic than advertised. They are now living with extended family and the person with MCS must wear a mask when she leaves the bedroom.

  • A couple gave up trying to renovate their home, gave it back to the bank and moved into a hotel.

  • Someone who had to leave her apartment and live with a family member is now having to leave that home because of renovations there. She has nowhere safe to go.

More stories from the MCS homeless can be found here. Warning: profanity makes an appearance in a couple of spots, but if you can get past that, the page is well worth reading.

Dr. Pamela Gibson of James Madison University wrote an eye-opening paper entitled Chemical Sensitivity/Chemical Injury and Life Disruption. In it she notes that 66% of people with MCS who were surveyed reported living in unusual conditions, such as their cars, in RVs, on porches or in tents at some time in their illness. One survey respondent reported living for a year in her horse trailer. Less than half of the MCS sufferers surveyed considered their current home to be "very safe" (5%) or "mostly safe: (35.6%). People had spent an average of $27,816 trying to make their homes healthier for them. An article published seven years later found the total to be $57,000.

The Environmental Health Coalition of Western Massachusetts also looked at the issue. In a press release entitled Homelessness at Critical Level for Western Massachusetts Chemically Injured   the group noted the following:

  • Homelessness in the general population is estimated to be below 1%, but 57% of MCS sufferers surveyed had been homeless at some point, and 10–20% of respondents were homeless at the time of the survey.

  • 25% had lived in a car, for an average of nine months.

  • 15% had lived in a tent, for an average of eight months.

  • 73% had at some point had to live in places that made them sick.

  • Only 25% considered their current housing to be both safe and permanent.

The "safety net" options for those who are healthy are not options for those with MCS. I personally know of no homeless shelter anywhere in the United States that would be suitable for those with serious chemical sensitivities. People truly have nowhere to go.

I am going to be frank and venture into territory that is sometimes considered taboo to discuss. Two MCS sufferers I know with housing challenges have recently expressed a desire to die. Suicide is a significant problem within the MCS community and, although it can be linked to many different aspects of the MCS life, housing, or lack thereof, often seems to be a trigger. From a purely secular, logical standpoint, the thoughts are understandable. A person feels that there is nowhere left on the earth to simply exist.

There are a number of ways you can help this important cause, including the following:

1. Make non-toxic choices for your own home. Be aware that your laundry products (which are pumped into the air through dryer vents), lawn and pest control chemicals, outdoor furnaces, etc. all affect your neighborhood and your neighbors.

2. If you own rental properties, make them MCS-safe. If you do so, and advertise them as such, you may be very surprised at the strength of the response.

3. Donate. I'm currently aware of two groups that are working to improve the MCS housing situation. Both are new, young organizations.  They are ReShelter and  The Jennifer Parker Foundation. ReShelter is preparing to award its first small grants to MCS sufferers within the next few months.

4. Pray. Please pray for us.  This is a very challenging and tiring fight.

Monday, August 20, 2012

A Bit of Good News

There's some good news on the toxins-in-common-products front this week. The Johnson and Johnson company has announced plans to remove a number of problematic chemicals from its products by 2015. The company had previously begun moving in a safer direction by setting a goal of 2013 for reformulating its baby product line.

The move comes after several years of pressure from health and environmental groups. Chemicals to be removed include formaldehyde, which is released from common preservatives, and triclosan, a widely-used antibacterial ingredient. Phthalates, certain fragrance ingredients, and some parabens will also be eliminated.

I have to admit to a bit of cynicism. History shows that sometimes toxic ingredients are removed from products only to be replaced with something that later proves to be equally problematic. I also doubt that enough health-impacting ingredients will be removed to make most of the products safe for those of us with serious chemical sensitivities.

Still, there is reason to be pleased with the news. In a New York Times article on the announcement,  a Johnson and Johnson official is quoted as saying that “there’s a very lively public discussion going on about the safety of ingredients in personal care products.”  The fact that manufacturers are beginning to hear and respond to the discussion is certainly positive.

Activists hope that other manufacturers will follow Johnson and Johnson's lead. The Campaign for Safe Cosmetics plans to continue to put pressure on other companies to do so. There are more than 175 nonprofit groups represented in the coalition.

The work of advocates and activists is important and welcomed, but none of us need to rely on them or wait for manufacturers to make changes. We can value our health and the health of those around us enough to make safer product choices now. Every purchase we make not only impacts us in the present, but is a vote telling manufacturers what we want to see on the shelves in the future. No one can force us to buy toxic products. We get to choose what we buy and what we use. Every day we get to make that choice and every day it has consequences. Let's choose wisely.

Sunday, August 12, 2012

The Purpose of the Building

This summer has been filled with more travel and family visiting than usual. I just returned from a camping trip with most of my husband's extended family. It's difficult to express how grateful I am for their willingness to sacrifice their own comfort to enable me to gather with them. I'm truly thankful for their Christlike hearts and valiant efforts to include me.

The trip was full of good family visiting times, but wasn't without its challenges. I had a significant chemical exposure (mosquito fogging) that introduced a new symptom to my list. Other challenges included an air conditioner that gave out during a traffic jam, a mix-up regarding a campsite reservation, a sick family member, and fearless skunks.

One challenge was quite unexpected and involved the use of a campground pavilion. We were a large group and had planned to gather under the shelter during our last day (a rainy one) to play games and visit. The campground office said it was fine as long as there was no other planned activity there.

Unfortunately, the campground office isn't the only entity involved with the pavilion. As we eventually learned, a group of volunteers (I believe they're called "Friends of the Shelter") built the facility. As we also learned, they are quite protective of it. We were confronted twice, at two different times during the day, with volunteers who were evidently very unhappy that we were using their building. I'm not sure I'll ever forget the sight of the second volunteer. He stood watching us, with a red face and semi-balled fists, looking like he would really like to hit someone. To be fair, he did eventually decide to be friendly and at the end of the conversation said, "I'm not trying to run you out," which at the beginning he seemed clearly to want to do.

It's hard to say exactly when the conversation took a turn and became more positive. Perhaps it was the moment when my husband asked simply, "So is this shelter just supposed to be for the volunteers?"  Maybe that's the point where the gentleman remembered why the pavilion was built. Isn't a shelter in a campground supposed to shelter campers?  Isn't being "friends of the shelter" a goal that's underneath the greater one of being friends of the humans?

The encounters seemed ludicrous at the time and still seem so as I write about them. I can't help but think, however, how similar they are to the way many people with MCS experience the church. Chemically sensitive people want to find shelter from life's storms and wonder why they aren't welcome in churches that were theoretically built for that purpose. They wonder how so many church members become "Friends of the Church Building" (who focus on making it more beautiful than healthy) rather than friends of people created in God's image who just want to enter the building without getting sick.

I correspond with many fellow MCS sufferers. One recently told me a familiar story of trying to communicate with her pastor about creating a church environment that's safe for her and other chemically sensitive members. She isn't making much progress. At one point she wrote, "We are being made to feel like a bother for wanting to come to church."  

I think she summed it up well. Is that the message the church really wants to send?  It's bad enough to send that message to chemically sensitive church members, but truly heartbreaking to send it to seekers. When people develop MCS or any chronic illness, they tend to become more open to spiritual realities and more hungry for spiritual truth. God is surely not pleased if people hungry to know Him can't enter a Christian church building because of the product choices others make.

Mark 11:15-17 tells this story:
When they arrived back in Jerusalem, Jesus entered the Temple and began to drive out the people buying and selling animals for sacrifices. He knocked over the tables of the money changers and the chairs of those selling doves, and he stopped everyone from using the Temple as a marketplace. He said to them, “The Scriptures declare, ‘My Temple will be called a house of prayer for all nations,’ but you have turned it into a den of thieves.”

Why was Jesus angry?  I imagine there were a number of reasons. Surely he was angry that commerce seemed to be taking precedence over spiritual pursuits. He was undoubtedly also angry, however, that the activities going on inside the building kept people who wanted to worship from being able to do so. The temple was designed with a series of courtyards and some people were allowed to go deeper into the complex than others were. Those who could simply walk by the marketplace activity to enter another court weren't impeded by the chaos. For those who could go no farther than the courtyard where the buying, selling, and money changing was going on, however, worship was a significant challenge. I imagine Jesus was angry that those who had no limitations on their ability to worship put barriers in the way of those who did.

I understand and appreciate the need to be stewards of and care for buildings, whether they’re campground pavilions or churches. I pray, however, that we never forget why they were built. They're for people.

Wednesday, August 1, 2012

The Limitations of Learning from Experience

I'm currently in the middle of a rather frustrating experience with my bank related to a fraudulent purchase made on my debit card. Unfortunately, the charge was to a virus software company, which has led bank employees I've spoken with to insist that the charge is a renewal fee. I've been told that the company charges renewal fees that people forget they've authorized "all the time."

I'm sure it's true that many people do forget they've authorized renewals and get surprised when charges appear on their bank statements. I'm brainfogged often enough that I can also imagine finding myself in a similar situation at some point. However, that pattern doesn't fit this circumstance. I didn't place the order (which was not for virus protection renewal), but someone else using my card number did. Fortunately, the software company agrees with me, even if the bank is still unconvinced. Because bank employees have learned a likely scenario from previous experiences, they've evidently concluded that no other option is possible. Sometimes learning from experience is not an entirely positive thing.

It occurs to me that the same dynamic often plays out in the world of chemical sensitivities. It's often difficult for those of us with MCS to convince others that our reactions are real because our experiences differ so greatly from their own. People who've never had conscious negative reactions to dryer sheets, for example, may easily conclude that "Dryer sheets can't hurt people" rather than, "Fortunately, my detoxification system is currently strong enough to keep me from having immediate symptoms from this." 

It's certainly natural to learn from personal experience and to be vaguely suspicious of accounts of experiences that don't match our own history and reality. Even those of us with MCS can fall into that mindset at times. Let's say, for example, that I'm seriously reactive to Substance A, but can handle, to a certain extent, Substance B. If I hear fellow MCS sufferers express big problems with Substance B, I sometimes find myself thinking thoughts like "Maybe they could handle it if they would _________ ." (Fill in the blank with whatever applies: use more ventilation, wear a mask, try a different brand, etc.)  Fortunately, I generally catch these thoughts early and discard them. The fact that I have them at all, however, helps me understand why healthy people so often negate the reality of chemical sensitivity and make some of the dismissive remarks they do.

The truth is that people can experience the same sensory environment in entirely different ways. A tall adult will view a parade differently than the small child standing behind him. A blind person at the same parade will experience it differently than someone who is deaf.

The Biblical book of 2 Kings shares a story of two people who had differing experiences of the same situation. One morning the prophet Elisha and his servant awakened to find their city surrounded by hostile forces. The servant saw only the enemy, but Elisha saw the forces God had sent to fight for them. Elisha prayed that his servant's eyes would be opened and that they would both see the same reality.

Those of us with chemical sensitivities often pray a similar prayer. We beg for eyes to be opened and for the MCS world to be seen and understood. We know our condition seems strange and that our physical reactions to chemicals are hard to believe. We know our account of how we experience the world around us seems foreign and bizarre.

None of that, however, changes the fact that our experiences and reactions are very real. Please believe us. We have no reason to lie and it hurts when we're told that we're deluded, exaggerating, excessively fearful or just lack faith. Trust us, listen to us, and let us serve as a warning about the toxic nature of products that are used every day. Please don't just learn from your own experiences. Learn from ours, too.