In the year 2000, our family had our own Y2K disaster. Mommy became so sick she had to leave the house. Thankfully, we happened to have a pine forest in our back yard in Virginia and several hundred acres of surrounding crop land. Thankfully, my children were old enough (17 and 15) to take over household chores. Thankfully, I had a husband who could still work.
What precipitated my illness was every housewife’s dream. A brand-new kitchen. The boss gave us all new kitchen cupboards, a new dishwasher, and new linoleum. I added fresh paint and wallpaper. The kitchen looked great, all sparkly and new. However, within a very short time I began to feel ill. I suffered frequent headaches, had no energy, and I was picking up food allergies right and left. I’d been lactose intolerant for fifteen years and had also been making my own bar soap as well as laundry soap for at least that long because I couldn’t tolerate anything from the store. Now, I was reacting to wheat, yeast, corn, brown rice, oats, soy, and so on. As I struggled with all these new food allergies, my weight began to drop. Before I finally left the house in April of 2000, I was down to only 88 lbs. (I’m 5’ 5”) I got so thin it was hard to find myself to get dressed each morning!
The thing that convinced me it was my house making me sick was that I always felt better outside. One day after being outside for a time, I came in and sat down at the kitchen table. My son, Paul, came in a few minutes later and asked me something. I knew he’d spoken to me but I was too “stupid” as I call the mental fogginess caused by the stuff in the air that doesn’t agree with me, that I couldn’t put together an answer and say it. He tried again, “Mom . . . Mom?”
I went outside and after awhile I could converse with him just fine. Great, I thought, I have to live outside? And there began my episode of forced camping which I’m still doing today though I’m quite comfortable with it now and my health is much improved.
As I toted my sleeping bag out to my tent in the forest that first night, my daughter Regena said, “You’re being awfully brave about this, Mom.” Brave? I thought. I have no choice. It’s either move outside or die.
I stayed out in the forest from April 10 until the end of July, when Virginia received so much rain that the whole forest grew moldy, to which I was allergic as is my son, so he and I were forced to go stay with my folks in Idaho. During that summer in Virginia I never again went in the house, nor did I wear my glasses, just in case they were adding to my troubles because of the plastic lenses and nose pieces. My daughter brought me meals and my son toted a five gallon bucket full of water out to the forest so I could take a sponge bath and wash my hair. When it rained, I sat in my one-man pup tent and knitted. I got a lot of knitting done, which was good because it still got pretty cold at night (it even snowed once or twice) and since I was so weak and thin, I needed some good warm coverings. Thankfully, I’m not allergic to wool, so I made myself wool socks, wool tights, a wool sweater and a wool hat. I wore my husbands huge down-filled coat, some heavy winter boots and a pair of fur-lined leather gloves. This outfit is what I lived in until the weather warmed up sometime toward the end of May.
On the humorous side, I have several interesting memories from the three months I spent out in the forest. One occurred shortly after I moved out there, when I changed tent locations to a more secluded place. That night as I crawled in my sleeping bag and settled down for sleep, I thought I heard breathing other than my own. That’s silly, I thought, no one else is out here except me. I figured I was just hearing my own breathing since it was so quiet. But to test my theory, I held my breath and to my surprise the sound of breathing continued!
Now, my heart was racing. What in the world could be out there, I wondered. So I lay there, frightened and trembling, trying to figure out who it could be, until I decided that was ridiculous. I couldn’t spend the entire night that way. I was just going to have to be brave and find out what it was. So, I crawled out of my sleeping bag, reached for my flashlight, unzipped my tent and ventured forth into the darkness.
I could not hear the breathing on this side of the tent. Carefully, I crept around to the other side of the tent, shone my flashlight onto the tree that was there and saw nothing until I followed the trunk upwards about four feet. There, the branches parted outward from the trunk to make a spot the shape of my open palm, and in this hand-like place all curled up and snuggly-looking was a possum. He blinked at the light but didn’t move. I smiled, returned to my own sleeping place and decided it was kind of nice to have some company out here.
Another memory was when I was sleeping outside between two trees. I didn’t stay in my nylon pup tent for long because the nylon evidently bothered me, either that or there was not enough air flow through it. At any rate, I was now outside under the stars and for rain shelter I stuck two large umbrellas over me and caught them in the branches of the two trees. It sort of worked.
One night I was awakened by something falling on my leg. I assumed it must have just been a particularly vivid dream, but then I realized my leg hurt. Something must have fallen out of the tree of such a size and height that it landed on my leg with enough force to hurt. Now, what could be up in the tree at night that would fall out, I wondered. And while I was looking around, in the moonlight, on the path about six feet from my head I saw a very large rat slowly creeping along. If you have never seen a large rat creeping along in the moonlight, I suggest you don’t try for it. It’s not a pretty sight.
I discovered that rats aren’t the only critters to fall out of trees in the night. Birds do too. I heard a couple of birds, on separate occasions, go flutter, flutter, in the branches of the tree then land with a plump on the ground. They’d give some sort of annoyed squawk then fly briefly up to a lower branch to continue their night’s slumber. This was something I’d never thought to wonder about before. Do birds fall out of trees in the night? The answer is yes.
Another memory that remains special to me happened the first night I had to leave my tent and sleep under the stars. Now, there are a lot of people who like to sleep outside under the stars, but I’m not one of them. I like sleeping in a bed with four walls and a ceiling around me. That way I not only have a consistently dry, bug-free place to sleep but I’m safe from all kinds of predators, large and small. Anyway, after I began feeling sick even in my tent, I decided the only place else to go was outside. So, I arranged my sleeping bag under the two trees with the umbrellas over me. That night as I huddled in my sleeping bag, all alone, a quarter of a mile from my nice warm house where my family slept without me, I was so sad and frightened I began to cry; from being alone in a dark forest far from home, from wondering what was going to come up and sniff me in the night (mean dogs?), from wondering what my future could possibly be in this life if I was allergic to the whole of humanity. Yes, I thought about the fact that I couldn’t attend my daughter’s wedding or my mother’s funeral, not to mention all the other events in between. Could no longer help out and be a part of the family; I felt like just a burden. Would I ever be able to go back in the house again? Go shopping for groceries again? I had never complained about my job as a housewife. I liked it. Why was it being taken away from me?
Well, as I lay there thinking these thoughts, a firefly came by and landed on the stem of a weed about twelve feet away at just about eye level. He flashed three times then paused a while, flashed three times then paused. He did this over and over, always flashing three times then pausing. As I watched him, I remembered a story I read some years back written by a mom who had a very young child that was going to have surgery. She knew he would be unconscious for some time while in the hospital, so she taught him before he went in that when she squeezed his hand three times, she was really saying, “I love you.” It became a game for them and when the surgery time came, she sat by his bed and squeezed his hand three times over and over, and eventually, he squeezed her back.
That little firefly stayed there for half an hour, while all his buddies flew past and up and down, in the whimsical fashion that fireflies have in the East. Out here in Texas, they’re a little different. They act more like they’re on an Interstate. Zoom . . . they whiz past and they’re gone. I believe this little guy was sent by his creator to reassure me that He knew right where I was and that everything was going to be all right and I didn’t have to be afraid of anything. He was telling me “I love you” over and over with the little flashing light and to this day I think of that special night every time I see a firefly. I smiled, closed my eyes and never had another worry for as long as I slept in the forest.
Virginia is a beautiful green state and the reason for all that beautiful greenery is the rain. Well, in August it began to rain, and rain a lot. So much that the entire forest grew moldy. Now, I’m not as allergic to mold as my son is, he’s terribly allergic to it, but if I get exposed to enough of it for a length of time, it will give me a migraine that won’t let up. I was having a marathon migraine and my son was very ill and at this point, our family decided the only thing to do was send me and my son out to a drier area of the country, while my husband and daughter stayed in Virginia.
My folks lived in Idaho, so it made sense to go stay with them for awhile. After 3 months of living in the forest, I put on my glasses, got in our Chevy S-10 with my son and he and I headed for Idaho. It took only three days to get there, and the rain chased us the whole way. I couldn’t stop for long since we could not stay in a motel, nor eat in a restaurant. We got some food from grocery stores along the way (I used a particle mask to survive the perfume in the stores), and to sleep, we parked in farmers fields and slept in the truck (since rest areas are full of idling diesels). We used trees and bushes for restrooms (I tried to use rest area restrooms but I’d always come out with perfume on me (from other people or from cleaners) to the extent that I’d have to find a mud puddle to wash in then drive with the windows down for an hour or so until my clothes lost the smell). Paul pumped the gas for me since I couldn’t do it.
While on this trip out West, along about Denver, I lost my credit card. Had to call and deactivate the thing. Lovely, I thought, now how would I pay for gas and food to get to Idaho? I had a little cash, but it didn’t look like enough. As it turned out, we spent our last penny (literally) in the little town of Ririe getting gas to finish the trip to my parent’s house. I was actually short a dime, and had to look for money in the parking lot to pay my bill. I found a nickel and two pennies, sent Paul in to pay for it with the fist full of coins we had and found out we were still short three cents but the kind gas station attendant said it was close enough. Whew! So I arrived at my folk’s house sick and penniless, (just what every parent needs!)
Paul and I spent a month there, in the clean air (well, relatively, they were having forest fires that summer) of northern Idaho. At least the air was dry and we had no trouble with mold. Paul felt great and I was doing better too.
The month of September I spent driving around the arid Southwest looking for a new place for our family to live, and trying to find work for my husband. Arizona and New Mexico seemed logical so Paul and I headed there. It was not easy getting along, but we managed. As we had no way to refrigerate things, nor cook, nor could we eat in a restaurant, we bought a can opener and some disposable dishes. Breakfast was dry oats with a can of peaches, lunch was cheese and crackers, and dinner was a can of tuna and a can of green beans. This was our menu for an entire month. When we grew crazy (it happened a time or two) we went to a drive through and ordered a pizza. We slept at Desert Sands Motel as we called it, which meant driving out into the desert and parking, leaning our seats back or crawling into the bed of the pickup. For showers, we discovered a state park that let us use their shower facility for three dollars.
In October, after not finding a house or a job but deciding we needed to move West anyway, we went back to Virginia to help pack up the moving van. We moved our belongings to a storage unit in Idaho, moved into my husband’s parent’s 30-foot fifth-wheel and headed South to look for a job. We found nothing. Spent a year looking, moving around the country, seeing and experiencing more RV parks than we wanted to. We had to stay South during the cold winter months because I had to have all the windows open all the time in order to stay in the RV and not end up with a headache. That summer Rick found a temporary job on a ranch in Colorado where I could stay outside all summer, but there was a lot of crop dusting going on in the area and I had frequent headaches.
That Fall, we knew we had to head South again before cold weather came, so we picked up a horse trailer (a rusty old thing which was all we could afford) into which we put a chest freezer and a washing machine, so we could do our own laundry since laundromats present a substantial problem if a person is allergic to the perfume in laundry soaps and fabric softeners. We hauled this behind the fifth wheel, which made us quite a parade as we went by. Unfortunately, the horse trailer was ugly and many RV owners viewed us with suspicion and we were not welcome at many RV parks. One place even thought we must be making drugs in the back of our horse trailer!
Finally, in January of 2002 when we were languishing in an RV park in Alpine, Texas and just about broke, we bumped into a kind rancher who gave Rick a job building fence and let us park our fifth-wheel on his ranch beside a small house he let us move into, so we’d have a little more room. Can you imagine four adults living in a 30 foot fifth-wheel for over a year? Unless you’ve done it, you probably can’t. To state the obvious, it gets a little crowded at times.
Anyway, we’re still here in West Texas and the fresh, clean air is making everyone feel better! Paul is doing great and I think I may even be getting better, though slowly. I can stay in the fifth-wheel a little longer this summer than last summer. If I stay in it too long, I start feeling stupid, and if I don’t get out soon enough I get a headache. This usually occurs when the outside temperature is 60 degrees, but this summer I can stay in for awhile even when it’s 70 outside. The windows are all still open of course. In the winter, I can sleep in the fifth-wheel as long as every window remains open, which gets a little cold at times. I’ve discovered some ideas that help, lots of wool and feathers and a hair dryer is just the thing for warming up popsicle toes. It’s also good to use in the foot of your sleeping bag to warm it up before you stick your feet in there.
Last summer, I slept in a cave that’s not too far from the house. I have a few funny memories of that. It’s a small cave with a place that’s just the right size for one person to put a sleeping bag. But it’s good protection against wind and rain, unless there’s too much rain and for that I had to dig a couple ditches around me, but by the time it rained that much, the surrounding vegetation molded (who would have thought you could find mold in the desert?) so I couldn’t stay there anymore. Anyway, I kind of wondered about predators but it turned out the main problem was Daddy long leg spiders. The cave was overrun with them. Every night before retiring I’d smash a dozen or so. Actually, at first I was content to ignore them but then when they started dining on me, I decided I’d better do something to reduce their numbers. I’d wake up every morning with a spider bite on my forehead or chin or knuckle, which, with my slower immune system, would take a couple weeks to heal up. I finally devised a screen that fit over my face to protect me from spiders, mosquitos and anything else that ‘bugged’ me in the night. It worked great until the following summer when I ran into a tick that could penetrate my defenses and to which I was super, super allergic. This thing about killed me until I finally figured out what it was, and I had to leave the cave and sleep in the back yard, which worked fine unless it rained and then I went into the fifth-wheel and had to put up with the slight headache I woke up with.
Anyway, back to the cave. The thing that was hardest to get used to were the bats. Lots of them, fluttering in and out all night long. Ugh, what a mental picture. The only way I had to combat the ickiness of it was to imagine that they were bright yellow chickadees flying past. If I did that, then I could sleep without being grossed out. One night, I went to bed later than usual and in my flashlight beam found a tiny bat hanging from the ceiling over my sleeping bag. Joy. But surprisingly enough, he was kind of cute. Very small, about mouse-sized and a golden color. After that I didn’t mind them so much. There was one large bat that lived in the cave who had ears like a donkey, whom I named Horatio, just so I could kind of be friends with my cavemates, you know. As long as he had a name, I didn’t mind him quite as much, or I told myself that. Actually, they did help out the mosquito population in the cave.
The next funny memory was that of something breathing. Again. Only this time it sounded as big as me, and it was back in the cave, or it sounded like it was. Could it be a coyote, or a lion? They do have lions around here. The first time I heard this, I hurried back to the house, got my husband, handed him a baseball bat and we went back to the cave to get the thing but we never found it. The next night there it was again, after I was already in bed, of course. I got up, switched on the flashlight, grabbed the baseball bat and crept back into the cave but nothing was there. I walked around the outside of the cave and found nothing.
I must have heard that thing, whatever it was, for two months solid, every night, but I never, ever found out what it was. My husband even heard it once, for which I was thankful because I was beginning to think he thought I was making it all up. But even he couldn’t find it. All we could figure was that it was some creature lying in a crack that we couldn’t find but the shape of the cave accentuated the sound of his breathing. Do you have any idea what it’s like to go to sleep in a cave, all by yourself, hearing the sound of something breathing but not able to find it, wondering if you were going to get eaten in the night after you fell asleep? Gracious! But, as I kept waking up morning after morning, I finally decided the thing had no intention of eating me, so I finally made myself ignore it.
One night, I came to bed rather late again, a nice quiet, dark night, and just as I got to the mouth of my cave, a rattlesnake went off. Wow, talk about getting your adrenalin going! I never did see him, he was in the rocks somewhere, but there was a ring-tailed cat antagonizing him, for some reason. The cat didn’t like my flashlight and took off. I decided it would be silly to sleep there, knowing there was a rattlesnake only a few feet away from my head, so I went back to the fifth-wheel. I wasn’t too keen on returning the next night, but I never heard from the snake again.
I discovered that a bright flashlight is about the best weapon for discouraging nighttime visitors. They don’t like it. Skunks are the main trouble around here, with the occasional porcupine and raccoon. Every time I heard rustling outside my cave, I’d just shine my flashlight over there, see a ‘pretty kitty’ as I call them, looking at me and off it would go in the other direction. How convenient.
One night, while lying in bed, I heard a larger rustling coming closer and closer. What in the world is that, I wondered, a dog? Finally, I sat up and shone my flashlight at the thing and it was a very large porcupine, just about to the foot of my sleeping bag. He did a rapid about-face and left.
Another time I heard some strange noises in the middle of the night. The cows moo occasionally and the bulls bellow and the dogs bark and sometimes the birds get mixed up when the moon is too bright and think it’s day (very annoying) but this was something I’d never heard before. It was some sort of an animal I didn’t recognize and it went on and on, so finally I decided to get up and see what was going on. Just for curiosity sake. I got up, switched on my flashlight, and walked down from my cave and there, on the dirt road, were two large porcupines. I watched them for awhile, wondering what was up. One was sort of chasing the other, and the one being chased acted like it didn’t really want to be chased, sort of grumpy, and that’s who was making the funny noise. As I watched them for awhile, it occurred to me that the one doing the chasing was probably thinking about making baby porcupines. As I walked back to my cave, something occurred to my sleepy brain that had never occurred to it before and that was: How do mama and papa porcupines go about making baby porcupines when they have all those quills to deal with? I didn’t ponder it much more than that, just went back to bed.
As I say, this summer the cave was full of ticks, so I couldn’t sleep there, but I’m getting along okay in the backyard. It’s a little windier out there and the rain is a problem, and there’s this fox that comes along and growls at me every now and then, but other than that, I manage to sleep pretty well out there, most nights.
Well, I wrote that first part in 2003. Things have changed since then. My husband of 24 years decided he could no longer handle the challenges of my affliction so he left in April of 2004. There’s a lot more I could say on that subject but suffice it to say that it was pretty hard and years later I’m still trying to recover from it. They say that when the hard times come, you find out who your real friends are. My kids, then 21 and 18, made the decision to put their own lives and futures on hold in order to take care of me, both financially and otherwise. They both received “advice” from their father and other well-meaning relatives that they really should attend college, but all the advice didn’t come with any financial support. They decided that food and shelter were a little more important. Their father left us with no house and no money. We did have a truck but a few months later he wanted it. My Dad gave us a truck that was the same age as Paul and it served us well for a couple years, but it leaked gas and I couldn’t ride in it because of the fumes. At this point my kids made some hard decisions. They decided to begin businesses of their own, so they could climb out of the hole they’d been left in. Regena started a web design business, mainly because she had a computer and was already familiar with some web design. Paul decided to start a fence building business, as he had previous experience and most of the required tools. I cooked the meals and did the laundry and helped out wherever I could. My kids worked hard to buy a new truck so that I could go places with them, and they bought the food and paid the rent. My Dad helped us with the finances for a little while and then in March of 2008 he gave us the down payment for some property in Alpine and my wonderful children began building me a special house with no dangerous materials.
It’s October of 2011 now, and we have a nearly finished house, very cute and very lovely; built entirely of safe materials for me. My health is improving daily and I do many things outside to build and improve the property. I built a small chicken house this summer for my bantams, and am working on building a fenced area for them. Regena was married this July and is happily living up in Hereford, Texas but before she left, she helped us finish putting the last layer of stucco on the house–it was a big job and we couldn’t have done it without her help. I have a vegetable garden that produced very well this summer in spite of the drought.

Dear madam,
My name is Virgilia Hess and I am a journalist student making a documentary on perfumes. I am contacting you because I need one person (I would prefer a woman) with the Multiple Chemical Sensitivity Syndrome for this documentary, who would agree to show me how she/he lives, how her/his life is, how you deal with this syndrome, etc. I am from Paris (France) but I live in New York and I need to film this person 2 or 3 days between february and end of march 2012, in New York or around (I can move to NJ, Connecticut, Pennsylvania or around)
If you think that you could help me, please let me know! Here are the details of the documentary I will make:
The documentary will be on perfumes. We will see two divergent opinions/views about perfumes (positive and negative) and in the sametime, people will learn many things on perfumes and other people’s lives in general. I think I am the best person to do this documentary because I am French but I live in the United States. Since the documentary is going to be a bilingual documentary (everytime someone will speak in engish I will put french subtitles and when someone will speak in french I will put english subtitles) and will take place in both countries, I won’t have any problem and won’t lose any time since I know both cities very well, know people who can help me and know where to go (best places) in both cities. I have the opportunity to film in these two cities that I chose because Paris and France in general is the European center of perfume and cosmetic manufacture and the US is where we are today.
3. Narrative Synopsis
Throughout all the report, we will follow the lives of two people.
The first person is someone who has a real passion for perfumes: her name is Amelie and she is a perfume designer/creator. She considers perfume like a piece of clothing, feels naked without perfume. We will see how she creates a perfume,how she brings the different scents together, how she lives , etc.
The second person is Maria (the name is fictive, I did not find her but almost!) whose perfumes are also central to her life but in another way: she cannot stand perfumes she suffers from the Multiple Chemical Sensitivity Syndrome and then cannot have any chemical, included perfumes in her life.We will discover her fight against perfumes and chemical, will explain what is MCS, see how she can live, certainly meet her doctor, her family, etc.
Throughout the report, we will go back and forth from one person to another (I believe my documentary will length an hour so it will be 5 minutes for the introduction and then 5-7minutes for person number 1, 5-7 minutes for person number 2 , then back to person number 1 during 5 -7 minutes again, and therefore around four turns like that to have an one hour documentary).
THANK YOU SO MUCH IN ADVANCE !
Best,
Virgilia Hess
Hi Virgilia,
Your project sounds like a wonderful idea, and I wish you all the best as you produce your film. It will surely be an exciting adventure for you, and it will be good to educate folks on the perfume challenge that people with chemical sensitivities face.
As yet, I don’t know of an individual living in or around the New York City area who has MCS, but if I hear of one before your time frame, I will certainly send their contact information to you. I wish that I could personally help you, but I live in West Texas.
Thanks so much for contacting me regarding this, and again I wish you all the best!
Sincerely,
Carolyn