From Susan and Brenda Herrmann, Louisville, Ohio 

February, 2002 

Environmental illness doesn't just make your body sick. It makes your whole life sick. Every aspect of it: Your finances, your relationships with your family, friends, church and business contacts. Many minor problems in every day living which the average person would not give too much thought to can become major stresses, even dangers, for the person with multiple allergies or environmental illness. It would take a book to describe all the many angles in the life of an EI sufferer well enough to give a full picture of what they experience and then that would tell only one person’s story. Each situation is unique. 

I, Susan, would like to describe what my sister Brenda and I have experienced in only one area of our EI experience -- that of being apartment renters. 

First, let me give you a general background to our situation--we are both disabled from allergies and chronic fatigue. Brenda is much worse off than I. She was born quite fragile but was able to work some off and on until her thirties. She didn't completely break down until she had a toxic reaction to new carpet at the same time that she was under great stress due to financial and personal demands that were made on her that she didn’t have the physical strength to carry. Since then she has gradually become worse and worse -- reacting to perfumes, shampoos, deodorants, hair spray, hair conditioners, room deodorizers, cleaning agents, cigarette smoke, wood smoke, varnishes, paints, laundry detergents, just about anything that smells. This is in addition to her allergies carried from childhood -- pollen, mold, foods. She has gone from being able to shop in a department store -- if she made quick work of it -- to usually sitting in the car and letting me to do the shopping. From being able to go to the grocery store once a week, if she bathed and washed her hair right afterward -- to cutting back visiting the grocery store to every two weeks. She’s gone from going to church maybe five times a year (in the past, church has often been a more chemically toxic environment than anywhere else with the exception of the perfume counter at the department store) to having to decide to not go at all. 

When Brenda started breaking down we were living in an apartment that was actually a duplex -- half of a house that was over 100 years old. This house was heated on one gas heating system -- the thermostat was controlled by whoever lived in the other half. It had a dirt floor in the basement (think mold) where the heating unit was. The roof over the room where my sister slept had a leak in it, controlled by a plastic pan in the crawl space. In the water in that pan grew mold. One day in mid-winter we thought we smelled enamel paint. This was an emergency situation -- we both started getting neuro-toxic symptoms within about 15 minutes. We immediately ran to open the windows but they were iced shut! After calling the guy next door (turns out he thought it would be a good day to paint his refrigerator!) and asking him to stop (fortunately he was nice about it), and then taking the hairdryer to the windows, we averted what could have been a really bad situation. Had our neighbor been belligerent and continued painting we would have had to leave the apartment immediately and go either to a hotel (another hazardous place) or to a members home (most members homes would have been a problem too). 

Brenda is very allergic to any kind of smoke including a small amount of smoke from the stove burner. When we first moved into this apartment the landlady and her family had lived in the other half and fortunately they were not smokers and forbade anyone to smoke there. Eventually they moved out and another woman lived in the other half. Even though this woman was a smoker she was allowed to live there as long as she only smoked outside, which she did, right under our kitchen window. She broke the rules occasionally and smoked indoors -- and of course we could always tell. We tried calling her a couple of times but our complaints were not effective enough until we complained to our landlady. That helped -- I will never forget the sight of that renter one night standing outside under a big umbrella in a terrific rainstorm, puffing away. We had to have our air and she had to have her fix. 

We had been needing to move to a location that was closer to church services as the long drives to church were wearing us down -- actually those long drives probably contributed to Brenda's breakdown too. But we were reluctant to make the final decision because we knew practically anywhere we moved would cost more than where we were and that meant asking those who were supporting us for more money each month. What finally moved us out of that apartment was the owners’ decision to sell it. It's possible the next owner would have let us stay -- but we had no guarantee that they would prohibit smokers on the other side. They might, for our sake, prohibit smoking, but probably would not confront the renter if the renter broke the rules or allowed his guests to break the rules. (Guests are the hardest to say no to, many people who will keep the rules themselves don’t have the backbone to insist that their guests keep them.) 

So we moved. It was scary taking it on as we both had serious fatigue to cope with. And we knew that moving often triggers allergens into the home – old pollen and dust, mold as well. This time we were determined to get a regular apartment so that (we thought) our air would not be mixing with the air of our neighbor. We also were determined to get an apartment with electric heat, as we were suspicious that the gas heat might be contributing to Brenda’s sensitivity level. We found an apartment that met those criteria and didn’t seem to smell of tobacco smoke from previous occupants. 

One day during the first winter we lived in our new apartment, our electricity went out. The electric company determined that there was a wiring problem that was the responsibility of the apartment owners. This was right before Christmas. According to the owners it could not be fixed until after Christmas – so they kindly offered us another unoccupied apartment to stay in. We hauled some cooking and sleeping items across the lawn and through the snow to this other apartment. Again, energy we badly needed to conserve was being drained. 

This unoccupied apartment was in the process of being prepared for a new renter & had new carpet in it. Had we been better educated about EI & toxic chemicals, we would have refused to stay there.

For something to sleep on, we brought the cushions from the seat of our couch and sleeping bags. This meant that we were sleeping very close to the floor and immediately we began having problems with fumes from the carpet. The smell of the new carpet in the bedrooms was so strong that we had to move out to the living room area where the carpet was older and smelled less. I taped up the doors to the bedrooms from top to bottom to try to prevent the chemicals from coming into the living room. 

Another overlooked danger from that apartment was pesticides. We didn’t realize at the time that it, as most apartments are, had been sprayed with a pesticide – in preparation for new renters. I remember one Sabbath I had succeeded in running the sprayer off when he came to our own apartment we were renting. I didn’t know – did he come other times when we were not there and spray? Many apartment complexes give their “bug man” a key to let himself in.) But that didn’t register on me then – and we were pretty ignorant about the dangers of pesticides then, too. 

After about a week of sleeping on the floor, it became clear the carpet was making Brenda sick – dopey and yet panicky, tearful, she had trouble remembering things. And yet, she now tells me if I hadn’t noticed that something was wrong with her, she probably would have stayed there until she lost her mental faculties. She knew something wasn’t right but, as with carbon monoxide poisoning, she also felt feelings of drugged relaxation. In desperation I decided we had to get out. We went to a hotel. 

Thankfully we found a hotel in a nearby town that had non smoking rooms – they were not as plentiful back then as they are now. We stayed there about 3 days during a big snowstorm – the Christmas weekend was delaying getting our electricity fixed. After about three days we were feeling the pinch money wise – fortunately a nearby church member put us up for the last night of the odyssey. Eating well enough during this time was a challenge – the stress was wearing us down so it was mandatory to eat enough to be able to cope energy-wise. We couldn’t afford to eat in restaurants the whole time and even if we could have that would have meant Brenda being exposed to cigarette smoke 3 times a day and that would have been out of the question. 

You would think that would be the end of the story – but when we finally and very thankfully returned to our original apartment, which now had heat, we found that we had a smoker beside us in the adjacent apartment – and their smoke was seeping through the walls at the electrical plug-ins, light switches and under the baseboards. I investigated the situation carefully, partly because I could hardly believe it, but it was true. The buildings we were living in were cheaply built and apparently pretty porous. I even pulled the edge of the carpet up from the baseboard and smelled the smoke coming through at the bottom of the wall. In desperation (we had signed a lease on the apartment and felt we couldn’t leave, and the thought of moving again was overwhelming) I pulled up the edges of the carpet on the sides of the rooms in our apartment that were adjacent to the neighbors apartment and taped the crack at the base of the wall shut. Then I taped every light switch and plug in that was not in use, and the surrounding edges. 

Both of us felt “wired” from the smoke, probably from the nicotine. Brenda’s heart beat too hard all the time and it took several months after we moved out before it went back to normal. When we first noticed the smoke we had bought an expensive air cleaner – one of the best with a HEPA filter -- thinking that would take care of the problem. It actually made it worse as it was so powerful that even on its lowest setting the machine helped to pull more tobacco in from the neighboring apartment. 

So, here we were in desperate need to move again, and really in no condition to take on such a task. God certainly heard our prayers and intervened for us. No sooner had spring arrived enough to make moving viable than we discovered an apartment for rent a block away. We had been looking for a house, because after our apartment experiences we knew we couldn’t risk the tobacco situation again. But we needed a house that had no carpet. As it turned out this apartment is a duplex, the owner lives on the other side, and is not a smoker. Not only that, she had built the duplexes with a 14-inch fire wall between the two units. She even volunteered to prohibit anyone from smoking in her apartment – and that included her grown son. 

Even more remarkably, the owners previous renter had moved in asking if the carpets could be pulled up because “ she just loved wood floors” AND THE OWNER HAD COMPLIED in all except one bedroom!! It is difficult to think of this as anything other than God’s direct intervention since this renter had moved in only a couple months before and now was being transferred by her employer out of the area! Not only was the timing of her move right for us, but had we not been out for a walk at the very hour we found that apartment, it would have been snatched up by someone else. Right after the owner had given us her word that she would hold it for us till we could find out if we could afford it (we needed to go home and make some calculations and some phone calls), she received a flood of people calling, stopping by and requesting to rent it. Since it’s a decent, well-located place on a well-traveled road, it would have rented in no time flat. 

So this is where we live now. Even with this better apartment, Brenda’s health and chemical sensitivities, while no longer spiraling out of control, have not improved. Her doctor tells her that this is common, that most MCS sufferers don’t get better, and often they get worse. 

And sadly, after about eight years of living here, we are finding that it is time to move on again. The windows in this apartment are constructed in such a way that there is a cavity at the base that is dark and damp and grows mold, especially in certain kinds of weather. The window frames themselves are growing mold under the varnish. Treating them is a problem – we are limited as to how aggressively we can clean them because we could damage varnish and, as renters, would be liable for repairs. Any of the mild cleaning jobs must be done with care, as any messing with moldy dust puts me in bed with a serious respiratory infection. That happened three times last year as a result of trying to clean up a moldy shelf in the garage (which happened to be right under Brenda’s bed). Also, because of these same windows and our landlady’s strict rules about how the outside of the apartment must appear, we can’t have even a window air conditioner – something that would greatly improve our quality of life during pollen season and during the damp, hot and moldy summer days. 

For the person with Environmental Illness, controlling their environment is everything. Not having the money or the resources or even the legal right to keep their environment under control have the potential to be more than a misfortune, the situation can become a disaster.

Going to the hospital is out of the question for some of us. It would be a guarantee of getting sicker instead of better. In times of national or local disaster, our options would reduce to zero. 

I put a lot of thought into preparing for the Y2K situation. I knew Brenda couldn’t go to a shelter if we lost our heat because of the smokers (even if they would have been confined to outdoors the smoke drifts inside and we would have been sleeping around people who smelled like tobacco smoke, that alone being enough to make her sick). Disinfectants, which would have been heavily used under such a situation, bother her too – one brand she ran into in a public restroom made her feel so spacey and out of it that she was afraid she wouldn’t have the presence of mind to get herself out of the bathroom. (Needless to say we stick pretty close to each other when we are in public because we never know what problems we will run into.) So, for Y2K preparedness, I bought a kerosene heater. I bought it with hopes that kerosene fumes wouldn’t be as bad as tobacco smoke, but looking back on it now it’s amazing that we considered this an option at all – it was the ultimate in positive thinking. Kerosene would have made her sick in no time. 

Once you are allergic to one thing you become allergic to other things much more easily. This puts you on your guard at all times. The stress of constantly fighting a multitude of problems and having nowhere to really escape contributes to the disease. Stress depletes your immune system. The weaker your immune system, the worse your allergies get, and the worse your allergies get, the more depleted your immune system gets. It becomes a downward spiral. 

What I’ve written here only represents one angle on our allergic situation. I haven’t described what its like trying to buy clothes, or trying to make money from home, or what it’s like making decisions about what to eat since we both have many food allergies. Having EI drastically affects our social life, since often people smell of chemicals even if they are not wearing perfume or cologne. Being ill all the time means it’s very important to have something to occupy your mind with – so entertainment becomes a problem. There are many books Brenda cannot read because they smell of tobacco, ink, or mold. And then there is the human aspect of dealing with depression and isolation and financial problems. Many, many things are involved. As I have said , I could write a book.