Life and Death

I’ve discovered something about myself. It’s extremely difficult for me to write about people who lose their lives because of avoidable chemical exposures.

Of course, that category is very large when you consider the role that chemicals can play in conditions like cancer and heart disease. The long-term consequences of using common chemicals can be heartbreaking, but I don’t find them as difficult to write about as the more sudden deaths.

When I hear about people who have a chemical exposure that immediately takes their life, my writing muscles seem to freeze. I just can’t come up with anything to say. On this blog, I did manage to write about three different young people who all died after using spray deodorant, and in my book, I shared the story of two babies who died after pesticides were applied in a neighboring apartment and of workers who died after using a wax remover.

What I’m currently having trouble wrapping my words around is a different sort of life and death scenario. It’s the story of two women with MCS in Canada. Both looked for safe, affordable housing for years and had doctors and others advocating for them. Both were unable to find an affordable home that kept them free of chemical exposures. Feeling they had no other options, they applied for MAiD (Medical Assistance in Dying) and were approved. Sophia ended her life in February. Denise is currently still alive.

Once again I find myself freezing up, unable to find the words to express my horror at this. It’s not that I’m shocked when people with chemical illness choose to die. During the first six weeks after I moved to Tennessee, there were three suicides among my online acquaintances. The pace isn’t always that brisk, but it certainly isn’t a rare occurrence. What makes this worse is that it’s officially sanctioned. People in positions of power decided that it’s acceptable to help people die instead of helping them find a way to avoid the very preventable suffering they endure from chemical exposures.

Fortunately, I don’t have to come up with the right things to say. I can just paste in this link, which takes you to two video clips and a written account of Denise’s story. I really hope you’ll take a look.

I do have one small complaint about the otherwise good coverage. In one of the video clips a reporter says that Denise needs “incredibly specific living conditions.” She has mobility issues, which makes housing more challenging than for someone without them, but avoiding the chemicals that make her so sick she wants to die is completely doable if people care enough. The article says Denise needs to avoid cigarette smoke, laundry chemicals, and air fresheners. Sophia, who died in February, had a similar wish list. She just needed a place to live that was free of cigarette smoke and chemical cleaners.

These quotes sum up the issue.

About Sophia: “It’s not that she didn’t want to live. She couldn’t live that way.”

About Denise: “Denise says she does not want to die, but she can’t find a place to live.”

There are a lot of reasons to force myself to write this post. One is to ask people to pray that Denise will find a safe affordable place to live before it’s too late. Another is to say this: People with severe MCS don’t get symptoms that are simply uncomfortable or inconvenient. Reactions can be life threatening or so incredibly painful and hard to manage that people no longer want to live. We don’t practice extreme avoidance just for fun.

To a large degree you hold our lives in your hands. What you do in your home matters to people around you. It matters a lot if you live in an apartment building, but it can also matter if you live in a detached home. Fumes from your laundry products are pumped into the neighborhood from your dryer vent. The chemicals you use on your lawn fill your neighbors’ air. If you idle your car in the driveway, paint your house with a toxic paint, or spray the exterior of your home for bugs, everyone around you is affected.

Choosing products to use in and around your home may seem like a minor choice. Sometimes, though, it’s actually a matter of life and death.

Linda and Penny

One of the silver linings of chemical illness is that I've met some wonderful and inspiring people who share the condition and model for me how to face it with grace and faith. One of them is Linda Baker. Linda sometimes shares interesting stories from her past on Facebook and she recently shared this one. She gave me permission to reprint it here and I hope you'll take time to read it.

*****

I found her huddled under a clear plastic tarp in a downtown alley. Fearing the worst for my friend Penny (not her real name), I had driven to Joplin with some supplies that might help keep her safe from the approaching winter storm. She was not in her usual place on the sidewalk outside the newspaper office, so I had begun to search the alleys. Finally, I saw her wedged between the two carts that held all her belongings. She had rigged the plastic tarp over the carts to form a sort of tent, with her back against a concrete block building.

Calling her name, I got out of my truck. There was no reply and the figure under the tarp did not move. The sharp wind took my breath away as sleet began to pound a path to the ground. I called Penny’s name again. Nothing. Fearing I might be too late to help her, I lifted a corner of the tarp. There sat Penny, wearing a thick scarf and earmuffs. She had not heard me calling.

Penny broke into a big grin and said, “I’m so glad you came! Can you get me some coffee?” Sure, I could do that. I also offered to bring her a sack of plain Wendy’s hamburgers, which I knew was one of her favorite meals. She clapped her hands in delight. I gave her the thick wool socks and gloves I had brought along for her, as well as some homemade high energy snacks. I wished I could do more. I offered to take her to a shelter. She explained that she had tried every shelter in town and that her body just couldn’t tolerate the pesticides and cleaners and disinfectants used in them. She had become severely ill from those exposures. I understood that. She was in a really tough situation.

Penny had been a straight A student in High School and had a typical upbringing. She married and had a son. She worked as a waitress at a little cafe on Main Street and was living a happy life until the day the restaurant was sprayed with pesticide. She became violently ill and passed out. Other employees carried her next door to the clinic. She was having great difficulty breathing and almost died. When she finally began to recover, the doctor told her she could not go back to work and would have to avoid further exposure to pesticide.

She had a difficult choice to make. Her family needed the income from her job, yet she was risking her life to go back into that toxic environment. She decided to try working again, but became seriously ill. In time, she lost her job, her family, her home, and her health. No longer able to tolerate any environment that had been sprayed with pesticide, she tried living in first one apartment, then another, but they had all been treated with pesticide. Finally, in desperation, she had begun living outdoors where she could breathe easier.

That is how I met her. People in town just called her “The Bag Lady”, but Mom and I knew she had a story. We used to take her hot meals on cold days. It took a long time before she fully trusted us, but when she finally did, her whole face would light up when she saw us coming. Various agencies tried to help her, but her body would not tolerate indoor environments. One day she shared her story of how she had ended up on the street and showed us a little duffel bag nestled among her other supplies on one of her carts. That bag was stuffed full of articles about allergies, chemical sensitivity, reactive airways disease, and other medical issues. The articles were organized into categories and her filing system would put mine to shame. She spent many of her days in the library and had carefully cut out articles about her illness from magazines that people were giving away. She knew what was wrong. She just didn’t know what to do about it.

Then came the day that we couldn’t find Penny. We had searched around town and even asked the librarian if she knew where Penny had gone. No one knew. By chance (although I know it was really God’s timing) I was driving through downtown Joplin one day and thought I saw Penny’s carts outside the library. I parked and went in. There sat Penny, who was thrilled to see me. She had caught a ride to Joplin, in hopes that they had more resources to help her.

When the library closed, I walked with her back to the spot where she was living. A couple of guys from a church down the street wandered by handing out Bible tracts. While one of them talked to her, I asked the other one if Penny could possibly come into their lobby long enough to warm up on the coldest days. That man looked like I had just asked him to pay off the national debt! Why, NO, she couldn’t come into their church building. Well, not unless she planned to come to church regularly and tithe! I tried to explain why they could not count on her attending church. The man looked very uncomfortable and you could tell he just wanted to be anywhere but standing there talking to someone who was asking him to help a homeless person. I frankly was appalled at his lack of compassion.

It wasn’t long before Mom and Dad went to Joplin for a medical appointment. It was bitterly cold and they had a sleeping bag and warm boots and gloves for Penny. They were disappointed when they couldn’t find her. Suddenly, Mom spotted her carts outside a downtown bar. Now, my mom had never been in a bar in her life, but she marched right in. Penny was seated by a front picture window. She explained that she had gone to the downtown church and asked if she could come in to warm up. They told her NO and turned her away. Meanwhile, the owner of the bar saw her suffering in the cold wind and had gone to invite her in. He told her she was welcome to stay until the bar closed at 2 AM and he brought her a hot meal. I will let you draw your own conclusion about who showed her Christian compassion.

These thoughts were going through my head as I started to go get hamburgers and coffee for Penny on that stormy winter night. A mixture of snow and sleet was coming down and I knew it wouldn’t be long before the roads became hazardous. As I got in my truck she hollered, “Could you get me one more thing?” I said, “Sure” and came back to see what she needed. Well, she asked for cigarettes. I hesitated and said, “I don’t think I can get you cigarettes.” She looked puzzled and said, “You’re over 21, aren’t you? Of course you can buy me cigarettes. You would be surprised how much a lit cigarette can warm up your hands on nights like this.”

Hmmm…. now I had a dilemma. I had never purchased cigarettes and really didn’t want to get them for her. I debated about what to do. Then, somewhere in my spirit, I heard a little voice say, “Who are you to judge her? You are going home to your nice warm house. She is spending the night .. and the next … and the next under a tarp in freezing cold weather. Help her any way you can.” She got her hamburgers and coffee -- and cigarettes.

With this current cold weather, Penny has been on my mind. There are countless people homeless, just trying to survive the day. Perhaps you will have an opportunity to donate your time or money to help them. Perhaps you can say an extra prayer for all those who are homeless. Perhaps God will lead you to meet your own “Penny”. Jesus cared about those people that society ridiculed or forgot. May we all follow His example.

“You will be judged on whether or not you are doing what Christ wants you to. So watch what you do and what you think; for there will be no mercy to those who have shown no mercy. But if you have been merciful, then God’s mercy toward you will win out over his judgment against you. Dear brothers, what’s the use of saying that you have faith and are Christians if you aren’t proving it by helping others? Will that kind of faith save anyone? If you have a friend who is in need of food and clothing, and you say to him, ‘Well, good-bye and God bless you; stay warm and eat hearty.’ and then don’t give him clothes or food, what good does that do?”
James 2:12-16

How Far Away is Far Enough?

Evidently, I haven't written a blog post since November, which is not-coincidentally when my sons and I made the decision to sell or rent out our respective houses and find a shared-but-separate home together. Since that time, I've been fairly consumed with the logistics involved in making a move. I've written about housing enough in the past that I don't think I need to rehash all the difficulties involved for people with chemical illness. It's a huge issue, and I would truly appreciate prayers for the process.

One of the initial challenges my sons and I are encountering in the house hunting journey is the difficulty of finding a home far enough away from highways and other busy roads. Unfortunately, it's difficult to say with precision how far away is far enough, even for people without chemical illness. Traffic pollution is a significant health issue, both because it's so hard to avoid and because it contains a complex mixture of both gaseous pollutants and fine particulate matter. Here's some of the information I've found:

• A publication by the National Resources Defense Council notes that health effects related to traffic pollution include cancer, heart disease, asthma, decreased lung function, pre-term birth, birth defects, and increased mortality related to such factors as heart attack, stroke, and pneumonia.

• The publication notes that dramatically elevated pollutant levels are generally found within 500 feet of busy roadways, but under certain conditions can extend much further.

• An article in the Digital Journal notes that people living within 300 feet of major roadways have higher rates of respiratory conditions, allergies, heart disease, and certain types of cancers.

• The author reports that a California study found that in the early morning hours, traffic pollution travels a mile or more from the highways.

• The article also states that the American Lung Association's 2013 "State of the Air" report determined that living or working within 0.3 miles of a highway or road is "more dangerous than people have been led to believe."

• A Time magazine article reported on a study finding that children whose families lived within 1,000 feet of a freeway when they were born were twice as likely as others to have autism.

• The Southern California Particle Center and Supersite (SCPCS) notes that many factors influence exposure to traffic pollution. These include weather conditions, such as temperature, humidity, and the speed and direction of the wind. Whether a home is upwind or downwind of the roadway is important, as is the construction of the house and the type of filtration system it has. Whether people are outdoors during peak traffic times or indoors with open windows also affects exposure levels.

So how close is too close? The SCPCS concludes that "scientists cannot say exactly how close is 'too close' at this point" and that "the closer people are to the source of traffic emissions, the higher their exposure is to many of the constituents of exhaust." Studies indicate that vulnerable populations, such as children, the elderly, or those with pre-existing health conditions should be especially careful. An article in the American Journal of Respiratory and Critical Care Medicine notes that exposure to traffic-related pollution can contribute to the development of COPD and that enhanced susceptibility is seen in people with asthma, which might be expected, and diabetes, which seems to me a less obvious association. Although I haven't seen this advice in print, I've been told that one expert in toxic illness recommends that those of us who suffer from MCS live at least five miles from a highway, which seems like good advice that can be extremely difficult to follow, especially when taking the needs of other family members into account.

Mitigating the health effects of traffic pollution, especially for those not planning a move, isn't easy. Avoiding as many other sources of chemical exposures as possible will help lower the overall toxic burden on the body. Good air filtration can help, as well, and planting vegetation can also be of some use. Although, in general, indoor air pollution is higher than that found outdoors, those living near busy roadways may find it prudent to shut windows and stay indoors during peak traffic hours.

To a degree, the issue seems to be gaining more attention. As I noted in a previous post, some state and local authorities are beginning to address the issue of building schools near major roadways, while others continue to ignore the risks. Compelling evidence of health effects does not appear to be enough, in and of itself, to consistently motivate action. Perhaps a growing awareness of the issue will inspire parents to raise the issue and apply pressure when decisions are being made.

Will the pollution from busy roadways become less problematic as electric and hybrid cars increase in popularity? Yes, to a degree, but some experts conclude that fine particulates from tire wear and roadway dust may continue to be an issue. I'm personally not pinning my hopes on a quick decrease in levels of exhaust fumes and am going to continue to pass on homes that are too close to busy roadways, no matter how well they fit other criteria. I just wish it weren't quite so challenging to figure out how far away is far enough.

Nomadic Wanderings: MCS Housing Challenges

I've addressed the topic of housing for the chemically ill several times, and I'm sure I'll continue to return to the issue. People who are very reactive to chemicals and other toxins (including those produced by mold) generally find that acquiring and maintaining safe housing is one of their largest struggles and needs. This week, an online friend detailed her search for safe housing over the last few years. I've asked if I could share her story with you, because I think it illustrates the problem well. She writes:

April 2010: We left our moldy house.

June 2010: I was chased (by chemicals/toxins) out of our townhouse.

July 2010: We stayed near family while looking for a rental in a drier climate. I experienced a lot of pain there.

August 2010: We rented a wonderful home in a dry climate.

July 2011: A TERRIBLY wet spring/summer (like wetter than in 20 years) created enough outdoor mold in the woods and on the house's wooden decks (etc.) that I was having 24/7 trouble breathing, couldn't eat, etc. I camped for two weeks.

August 2011: We rented a home and I was chased out by new chemicals (plus I was feeling horrible anyway because the house was very "mediocre" and there was an airport nearby).

October 2011: We rented a home with a great outdoor environment, but indoors it harbored mold. Eventually, I couldn't breathe well or function there. I slept in the car two nights.

February 2012: We rented another place because I was desperate. (It doesn’t work well when it’s very cold, you have three kids, and you can’t breathe in your house.) I only lasted in the new place two weeks. I couldn't stop having dry heaves, plus I had other scary symptoms. I stayed in an expensive camping cabin in a nearby state park for a week or so. I had heat and a bed, but I wasn't allowed to cook in it. My husband had to drive 30 minutes to bring me food.

Friends and family helped provide an almost-all-aluminum camper for me to use. I
stayed in a campground by myself for six weeks. I had a tiny fridge and griddle and I came back to our rental home every few days for showers. I improved quite a bit during those six weeks. Then the campground owner stained all his picnic tables and sprayed his trees. But by then I could tolerate living at the rental again for another couple of weeks before it became impossible again. I bounced around to various places in my (wonderful) camper to survive April and May. I sweltered in the rental cabin a few times because opening the windows gave me asthma from wood burning and the air conditioner unit had mold.

June 2012: Someone GAVE us a Winnebago, so we camped in the Winnebago and my camper. We did three months of dry camping (yikes, difficult), then two months at campgrounds because there was a burn ban (which kept me safe from campfires) and tourist season was winding down (reducing propane exhaust, etc.) I got SIGNIFICANTLY better during this time. Not totally healed by any means, but way better.

October 2012: We began staying in this "decent" mobile home (with real wood walls, not formaldehyde-laden paneling), but with the second worst outdoor environment of our homes, which became worse over time.

January 2013: We became aware of an increasing mold problem here. It's not reasonable to ask the landlord to do anything about it (long story), especially because the outdoor environment here is so bad for me.

February 2013: I REALLY started to go downhill. The outside air here has made my camper unusable unless we move it. There's no safe place to move it that has electricity to keep it warm. We've been searching for rentals almost every day since January. We actually DID find that needle-in-a-haystack house (for sale, not rent) that would probably work amazingly well. It's half the price of what we estimated to build from scratch (not to mention no headache of building.) But, we don't have the money for contract for deed and absolutely can't get financing (so far, unless there's something we missed), even if our church raised a big down payment for us. We have also been turned down by over 20 major organizations for help, both religious and secular.

This is where the story currently stands. Will you pray for my friend? Will you pray for all of us struggling with health-related housing issues? I'm still trying to reclaim my own house, hoping to be able to sleep inside again at some point.

In addition to prayer, people who care about this issue can help in other ways, some of which I've previously mentioned.

1. Do your best not to contribute to outdoor air quality problems. Your choice of laundry products, for instance, affects your neighbors because the chemicals are pumped into the neighborhood air through your dryer vent. When you choose to use lawn chemicals or burn leaves, it doesn't only affect you and your family, but also those who live nearby.

2. Financial help is always appreciated. Chemical illness is an expensive condition to manage. In 2003, an article in the journal Environmental Health Perspectives reported on a study that examined the efficacy of over a hundred treatments used by people with MCS. The study found that participants had spent more than a third of their annual income on health care costs and had spent an average of $57,000 in their attempts to create safe homes. My friend is still struggling with housing issues, but as you read, the help she received made a significant difference for her. I am also extremely grateful for help that I've received. A previous post mentions two non-profit organizations trying to raise funds to address the problem.

3. Consider participating in activities to raise awareness and help for the chemically ill. The Jennifer Parker Foundation is sponsoring a series of walkathons to be held on Sunday, May 5th. See their website for more information and to register.

Housing problems are daunting, but not insurmountable. Thank you for caring and helping.

Surviving Winter

As I've written before, primarily in the post entitled A Challenge that Hits Home, safe housing is a huge problem for the chemically reactive. Almost every day I read about a fellow chemical illness sufferer who is looking for some sort of temporary or permanent shelter. The fact that the great majority of homes, hotels, and emergency shelters are inaccessible to those with MCS is a huge problem. It's a serious issue any time of year, but in the winter it becomes a true crisis.

My situation is certainly not as bad as the situations many of my fellow sufferers find themselves in. I have a warm house to stay in during the day, but it becomes a problem at night, when mold levels rise. Because of my extreme sensitivity to mold, I sleep in a campervan. It’s pretty cold out there this time of year, but I'm able to stretch out, and I have electricity, which enables me to use a small space heater. It could definitely be worse.

People with MCS may find themselves struggling to stay warm for a variety of reasons. Some stay in trailers, sheds, workshops or other non-conventional buildings that are not well-insulated or designed for cold-weather living. Some live in conventional homes, but can't tolerate the home's heat source.

My healthy readers may wonder why an uncomfortable cold night is preferable to an uncomfortable night of reactions to a toxic environment. The short answer is that the body doesn't need to detox "cold." If I spend a cold night in my campervan, I may be tired the next day, but I don't have other lingering effects. If I spend the night in my home, I have continuing pain and other symptoms that just continue to worsen as my body is unable to rid itself of the mold toxins. There comes a point at which the cold itself is dangerous, but when it isn't life-threatening or likely to lead to permanent injury, choosing cold over toxins is reasonable.

Because this topic comes up so often, I've decided to compile some tips on staying warm at night. Some are things I've learned from experience and some are things I've heard from others. I haven't tried them all and they aren't all applicable to every situation, due to personal sensitivities, tolerances, and needs. I’ve written these primarily for those with toxic illness, but my healthy readers might want to read through them, too. You never know when an ice storm is going to take out your power. Here are some suggestions:

• Prepare in advance -- It's wise to have multiple layers of safe-for-you warm bedding and clothing ready, even if you don't need them now. Because it can take months to offgas newly purchased products, waiting until the need arises to purchase goods can be problematic. Even if you have stable housing now and think homelessness or semi-homelessness will never happen to you, I advise you to be prepared. I thought that, too.

• Invest in good quality bedding -- I'm personally a big fan of wool, which keeps me much warmer than other fabrics. In the winter I use a wool blanket inside a zero-degree sleeping bag, covered with a wool comforter. After looking for a zero-degree sleeping bag made of natural fabrics and not finding one, I finally decided on a nylon version. Nylon is the least toxic of the plastic fabrics and I find it much more tolerable than polyester or acrylic. I did need to wash my new bag many times and let it offgas for months before I could tolerate it, though. A cheaper bedding option is a mylar emergency blanket. They're a little loud and "crinkly," but do a good job of keeping a person wrapped inside them warm, and most people with chemical sensitivities seem to handle them well.

• Surround yourself with warmth on all sides-- The more cocooned you can be inside your bedding, the warmer you will stay. Sometimes people who can't find a tolerable sleeping bag will make a bag of sorts out of blankets. One blanket can be folded in half lengthwise and secured with pins or clips. It can go inside another folded blanket which has the opening on the other side. The goal is to minimize air intrusion. Keeping a blanket or another source of warmth below you as well as above you can be very helpful.

• Layers are your friend -- It's helpful to have some warm clothes that are too big for you so that you can easily layer other clothes underneath them. On the coldest nights I wear six layers of clothing to bed. The outer layer is a wool sweater that originally belonged to my husband who is much bigger than I am. By the time I have my other layers on, it fits me just fine.

• Cover as much of your body as possible -- A helpful tip I picked up from a fellow toxic illness sufferer is to wear a hooded sweatshirt at night. I had been wearing a sweatshirt and a knit cap, but the cap often fell off. A hooded sweatshirt solves that problem and also covers my neck. Although I haven't tried it, I've thought that wearing a ski mask to bed would probably be helpful. Tucking pant legs into socks will keep your legs fully covered.

• Put something warm in bed with you -- Sometimes people use microwaveable cloth bags filled with rice, corn, or beans. Most people with toxic illness don't handle the rubber or vinyl of traditional hot water bottles, but the same results can be obtained from filling a metal water bottle or canteen. Be careful not to burn yourself, of course. I've become a fan of air-activated hand warmers ("HotHands" is one brand). They stay hot all night long and seem very non-toxic.

• Pre-warm your body -- Some people recommend exercising to warm up, but too much exercising close to bedtime can interfere with sleep. Others prefer to take a warm bath or eat a small amount of spicy or hot food.

• Pre-warm your clothing --I've heard of people warming bedtime clothing in a dryer before putting it on.

• Pre-warm the bed -- A bed can be pre-warmed with a hair dryer. People concerned about electromagnetic fields don't generally recommend sleeping with an electric blanket or mattress pad, but some people use them to warm the bed, then turn them off and unplug them before sleeping.

• Insulate and block drafts -- Rolled towels or blankets can keep air from entering underneath doors. Reflective insulation or bubble wrap can be used for windows.

I've learned that keeping myself warm is not the only overnight wintertime challenge. For safety reasons, it seems wise to keep a cellphone with me, but I've learned that the batteries stop working if my phone gets too cold. I now wrap my phone in a wool sock and make sure it stays warm enough to function.

Stay warm, friends. Spring is coming!

“I” and “We”

Recently, a Facebook friend posted this quote: "When 'I' is replaced by 'we,' even 'illness' becomes 'wellness.'" It's an interesting sentence, both linguistically and conceptually, and in general MCS terms there is a lot of truth to the slogan. Those of us with chemical sensitivities can make non-toxic product choices for ourselves, but for us to function in the world with any degree of wellness requires others to make the same decisions.

The concept is very appropriate for me this week, not just in general terms, but in a very specific way. On two recent days, a small army of people invaded my house in order to help make it safer for me. As I mentioned in a previous post, safe housing is a huge need in the MCS community. Although my situation is much less dire than that of many others, I've personally been unable to sleep inside for over a year. Some friends have decided to do what they can to get me back in my home before winter and I'm exceptionally grateful for their assistance.

This experience reminds me again that help can be both very welcomed and somewhat difficult to accept. For the reasons mentioned in the post Illness and Shame, limitations imposed by chronic sickness often bring with them a degree of embarrassment. I think I've made progress in confronting that thought pattern, but when my friends started talking about helping, I realized I hadn't come as far as I thought I had. The gratitude and relief I felt was mixed with a healthy dose of discomfort and awkwardness.

The truth is, though, that I do need help. The job of doing what needs to be done to keep myself functioning is bigger than my resources. I'm more fortunate than many of my fellow MCS sufferers because I have a wonderful, supportive husband who does what he can to take care of me. He needs help, too, though. The job is bigger than both of us.

I find it interesting that within the span of a few verses in Galatians 6 we are told both to bear one another's burdens and carry our own load. I don't know the nuances of the words in the original language or how to determine when loads become burdens. I do know, though, that sometimes they do and that together we can lift burdens that are too heavy to carry alone.

Thank you, burden-bearers. Thank you to all who have helped me, both financially and logistically, with my house project. Special thanks go to Karen and Roseann. Your friendship is a treasured gift.

There are many, many people with MCS who are struggling under burdens too heavy for them to carry alone. I read accounts literally every day of people with very serious MCS-related housing needs. The story in this recently posted You Tube video is far too familiar. I don't know this couple, but I empathize deeply with their situation and I know they represent thousands more who are equally desperate.

I pray for all of my fellow MCS sufferers who are struggling with burdens that are too heavy to lift without help. I pray that some aspects of "I" will be turned to "we" so that some aspects of illness can be turned to wellness. I'm so grateful for the help I've had this week and I pray that others will have the assistance they need, too. Hurray for the burden-bearers. May their ranks multiply.

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.