Michael’s Story

[The previous blog titled “Fragrance in Places of Worship” should be read before this one.]

I started in the tree business in southern Connecticut in 1980, started out real small, just a pickup truck, a ladder, and a saw, and I eventually built up to lots of employees, lots of trucks. As my tree company grew, my client base became elite.  These folks wanted every square inch of their properties treated for every insect or disease problem. The chemical portion of the business grew.  I remember being reluctant to grow this part of the business, but in a service business, the clients dictate. I was doing a half million dollars a year in business, and in a 90-day period in the spring, we would spray over 100,000 gallons of pesticide. The pesticides were not supposed to freeze, so I used to keep them in the basement under my house. It seemed like a good idea at the time, but it doesn’t seem like a very good idea anymore.

           The pesticide trucks each had a big tank on the back that had impellers in it—things to agitate the liquid inside and move it around. And when something would break in there, we would empty the tank, pop the lid open, and jump right down inside the tank and fix it. I never gave it a thought at the time that it was dangerous. I never thought about air quality or anything else inside there. Don’t think that was too smart either.

            I don’t know exactly when I became sensitive, but I do know that it happened over a period of time. When I finally realized that I was becoming sensitive, the first thing I noticed was that I was having trouble with foods. I was feeling sick every time I ate, almost every kind of food. I remember saying that even some water seemed to make me sick, and that seemed preposterous. And I didn’t make the connection that I was having trouble with the pesticides until I noticed that I would get sick being around the trucks containing the pesticides. That didn’t make much sense to me, but I started to avoid being around the trucks. I couldn’t concentrate, and my short-term memory was poor. I became accident prone and took several falls, so I started shying away from climbing trees and operating our big wood chipper.

            One day in October 1993, I went to do an estimate for a well-respected ENT doctor, and he insisted I come into his house after he signed my contract. “I have to look up your nose,” he said as he went for his black bag. “How long have you been like this?” he asked.  Like what? My nose was clogged, but it had been for most of the last year. I was getting used to it. After looking up my nose, the doctor insisted I come to his office before it opened Monday morning; he seemed very concerned. The antibiotic treatment he prescribed for about three months did nothing, however, but severely increase the gastrointestinal symptoms that had been bothering me. Then to the infectious disease specialist at a prestigious hospital. Thirty days of intravenous antibiotics as an outpatient. No change. Sinus surgery, 2½ hours worth, with a severe case of apnea at the end of it. I had to be chemically stimulated to restart my breathing. This apnea was described to me as “unusual” by the surgeon. The swelling wouldn’t go down, the “infection” didn’t seem to clear, and steroids and another thirty days of intravenous antibiotics was prescribed. By this time, I was having allergic reactions to the antibiotic, so an antihistimine was added to my IV and two nurses were assigned to watch me, just in case.

            The antibiotic treatment hadn’t helped, but I had to keep my business going. On June 6, 1994, all three of my spray trucks were on the grounds of the local hospital and cancer center at 5:30 A.M. to spray pesticide on every tree and bush before the patients and day workers arrived.  I had avoided this part of the business all spring, but this job needed my personal supervision. I stayed back from the action in my truck with the windows up. Suddenly I saw a nurse walking straight into the spray area. No one else had seen her, so I jumped out of my truck and intercepted her. I climbed back into the truck and was sipping coffee when I started to feel funny. As I picked up the cup, I noticed a fiery red rash on the back of my hand, then I saw it on both hands, then my face and neck. I was quickly overcome with severe flu-type symptoms. Although I was within walking distance of the emergency room and doctors, I never thought there was any need to go inside. I just wanted to go home. One of my employees had to drive me home. I curled up in a ball for three days, much more interested in survival than causation. 

            From that point on, I was unable to work in my pesticide business. I seemed to be reacting to everything in my “normal” environment. I felt ill every time I drove my truck, and my reactions caused such mental confusion that I had to pull over, lost in places in my hometown where I had been hundreds of times.  I really thought I had lost my marbles.

            One of the things that happened after I got sick was that I developed extreme fatigue so that I was basically unable to stay awake. I used to sleep 14, 16, or more hours a day. I couldn’t stay awake more than 3 or 4 hours at a time, and that phase easily lasted for over 6 months. I can remember getting up in the morning, sending the guys out to work, coming home at 10:30 in the morning, falling asleep and staying asleep till the middle of the afternoon, waking up when the men would come back in, putting the trucks away, and going back to sleep right after dinner at 6:30. I would sleep 12 hours and get up and still be exhausted, like there was no amount of sleep that would cover it.

            People—my wife, my family, other people, my brother especially—used to complain about what a workaholic I was, how I was just unbelievably driven, I would never stop. I would work weekends, I would work till dark.  I just couldn’t get enough. I was really, really driven to work. So it wasn’t like I was looking for this to happen. It really ruined my workaholic ethic because you can’t be a workaholic and be asleep at the same time. 

            Going from being a workaholic to wondering how you’re going to provide for your wife and your two children is pretty tough to take, especially as a male in this society. Society expects you to provide for your family, and people look at you strangely when you don’t seem to be working your normal 40 hours or more. It’s hard for my wife to understand how she married a guy who at this age is looked at very strangely by the neighbors and a lot of family members because nobody really understands what’s going on with me besides the people in my house. 

            I’ve been a tremendous burden to my wife. I know that and at times I’ve been extremely frightened that she would just wake up one day and say: “I’ve had enough of this crap. I’m out of here.” She could get a better deal almost anywhere else as near as I can tell. That’s always been a concern. I’ve had to live with that, and when I’m really sick and I’m down and out, boy, I can get myself into a wicked hole where all I’m doing is lying in bed and thinking maybe I’ll get up and go downstairs and she’s finally had enough and she’s gone. I hear the car go out and she may have only gone to the grocery store, but I think maybe she’s had enough, she’s not coming back. I wouldn’t blame her.

            It’s also hard for both my little sons because all the other kids’ fathers, they go to work every day. They’re not hanging around a lot, and I’ve had to answer some difficult questions. My sons try to understand it, but it’s still very difficult to explain to a five year old or eight year old why Daddy doesn’t do the same things as all the other kids’ daddies. Why Daddy can’t go out to the soccer practice at sundown when everyone is covered with bug spray out there or go to the beach when everyone is covered with suntan lotion or any other number of things that have happened. But my sons have come to understand it because every person in my family has seen me have a major reaction to something that was very innocuous to everyone else who was at one of these events.

            I come from a big, tight-knit Irish family. I don’t know if they get any tighter. I’ve been sick a long time now, and as much as I’ve explained this to everyone and Judy has told them, relatives still come to visit and wear perfume. We go to visit my mother, and she’s got air fresheners hanging all over the house. She’s painting with stain-killing paint while we’re visiting there. She’ll say, “Well, it’s in the other end of the house. You don’t have to worry about it.” People just don’t understand how sensitive you can be and how sick you can become from household cleaning products or their perfume or their aftershave or little things like that. I cannot get in my mother’s car. I cannot ride in her car because it just smells so much of perfume. Even if she doesn’t have any new perfume on, her car just smells of perfume, and I can’t even sit in it.

*        *        *        *        *

When you’re very sick, you don’t have much left, but I’ve never lost my sense of humor. I’ve tried to hang on to that because I think if I really did lose my sense of humor, I would start crying and I would never be able to stop. The other thing is, I really think having a strong faith has been extremely important to me in hanging on, not just through this illness but throughout my whole life, through all kinds of things. It’s always been there for me. I grew up having that, I was brought up that way. I’ve got to admit, I’ve had to test it really hard a couple of times. I don’t know how anyone makes it through anything, much less a long-term chronic illness or any kind of chronic life situation, without having something that they can really hang onto. You can call it whatever you want, but I think it’s really important, and I wouldn’t have made it without it.

            Judy and I’ve always gone to church. In fact, on our first date we went to church before we had dinner. We used to live not very far down the street from this little church. We got married in that little church, and we had both our children baptized in that church. When I started getting sick, before I realized what was going on, I noticed that when I went to church I would be really ill by the time the service was over, if I could even make it through the service. Sometimes I literally had to stumble out of church because I felt so ill. I thought I had done something bad and I was just paranoid about sin or something and God was throwing me out of church. I really was concerned about what was going on. I had no clue what the problem was. Now I miss going to church so much, and every once in a while I’ll try it, like just yesterday, for example, I tried going to church and I did manage to make it through the service, but I was really, really sick for about three or four hours afterwards. I was fine when I got there, but about halfway through the service some woman came in late and sat down a couple of rows in front of us. The eau de whatever she had on—she smelled beautiful, but I could not handle it. I managed to stay through the service, but I was extremely mentally confused by the time I got out of there and just real foggy and it didn’t clear until after lunch. It’s upsetting not to be able to go to church and not to be able to attend other functions, but church is especially bad because everybody gets all gussied up to go there.

*        *        *        *        *

I still have to be really careful because all I need is a slight exposure and I’m in trouble. For some reason, petroleum will really set me off. Even though I love my tractor, there are quite a few days when I can’t use it. The fumes are just too much for me, I can’t get near it. I usually have to have someone else get the fuel for it, and even put the fuel in. Then if any fuel spills, I have to wait for it to dry off completely before I get on the tractor because the smell of diesel fuel, just about any kind of petroleum, can make me real sick, and it makes me very angry sometimes. I get agitated if I go to the gas station and fill my own gas tank up. Lots of times I get very agitated from the fumes, and I feel like ripping the jugular out of the gas station attendant.

*        *        *        *        *

As for the past, when I made my living spraying pesticides, I cringe every time I think of the people whom I mishandled when they asked us to notify them when we sprayed their neighbors or harassed us while we were legally filling our trucks at streams with a suction hose. (We were accused of dumping, not filling.) Both sides approached the issues rigidly, resulting in misunderstanding all around. The biggest curse of all though is the harm that is being done to the applicators of pesticides. More than once I let go employees who complained of symptoms that they associated with applying chemicals. I thought they were just malcontents with imaginary complaints. The warning labels on the pesticide containers are incomplete, and there is nothing to keep anyone from mixing chemicals accidentally or on purpose in an application process that could create a deadly toxic cocktail. More and more chemicals are sprayed on residential properties every year. 

            I can remember a specific incident where a woman came out in her driveway the first thing in the morning. There was a little cul-de-sac and there were five houses on this cul-de-sac and we sprayed four of those five houses. At the only house we didn’t spray, this woman came out and literally just started screaming at me about how she didn’t want pesticides sprayed in the neighborhood. It was 8:30 in the morning and she obviously didn’t know I owned the business. I gave her a serious rash of crap because she had given it to me, and I have thought back about that many times. She was complaining to me that her child was really allergic to pesticides and she was just trying to protect her child and at the time all I was thinking about was the 450 bucks she was trying to keep me from making on this street. I thought I was just down there like the Good Humor man, I was just down there delivering the ice cream. I didn’t think I was doing anything more serious than that. I wish I could apologize to that lady. I’m sure that her little kid probably was sick from pesticides.

*        *        *        *        *

We moved from Connecticut to northern New England on January 29, 1995, leaving at 3:30 A.M. to avoid traffic and traffic fumes. I drove a U-Haul truck 6½ hours with the windows down and no heat in frigid weather in order to avoid the combustion fumes from the heater. We moved to get to a cleaner environment, which seems to have worked, although it’s taken years for me to notice a substantial improvement. We’ve been here for almost five years now. I’ve really started trying to work in the last year. The only other thing I know besides tree work is remodeling houses and working on houses. Since we moved to northern New England, we’ve worked on three different houses trying to make them safe for me to live in. We’ve also been trying to invest a little bit and fix up some other houses and hire people to work on them using safe paints and building materials that don’t bother me too much. Then we turn them over and sell them and make some money, and that seems to be working on a small scale for us at this time. That’s basically how we’re surviving, but it takes both of us to do it. On days that I can’t function, Judy ends up running the family, running the business, doing the whole thing. I couldn’t do it by myself, that’s for sure.

            I’ve been sick for over eight years, and that makes it seem very difficult to plan anything for the future although I always used to be a big long-range planner. My plan now is to make it through to the end of the day, make it through tomorrow. I’m planning to the end of the week. It’s very hard to plan for long range, when sometimes just surviving minute to minute or making it through the next hour really seems like where you’ve got to put all your energy. You don’t have a whole lot of energy to plan long-term, future-type thoughts. It’s very difficult to just go along like that every day. I kind of feel like I got robbed, and although I’d like to think that there’s going to be a bright, rosy future, I know that I have to spend my energy focusing on making it through day to day and getting my family provided for and surviving day to day. I have no idea whether I’m going to make it long-term.

*        *        *        *        *

Judy, Michael’s Wife

After we renovated our farmhouse with all nontoxic substances, we moved in in a flurry pace. Within 48 hours, however, Michael was sleeping outside on the porch under five wool blankets and three sleeping bags because he was unable to live in the house. It was November, and it was beginning to snow, so he was really freezing out there. We had been renovating the house for four months, and Michael had been in the house every single day with no problem until the last two or three weeks when we were working on the kitchen floor. We were having it laid with linoleum flooring, and Michael noticed he was losing his voice and not feeling very good. We are convinced that the glue that was holding the linoleum to the floor was what pushed Michael out the door. He was unable to enter the house for another month after that except for very short periods of time. When he did, you could see a red rash develop on his face and he would get beady eyes, glassy, watery eyes. 

            During that time when Michael was sleeping on the porch, I ran into a friend from high school who lives in this town we had recently moved to. So this guy whom I hadn’t seen in twenty years said, “Well, let’s get together.  Come on over to my house.”  And I had to politely say, “I’m sorry, we can’t come to your house.” To which he replied, “Well, what’s the deal, you can’t come to my house?” Well, what am I supposed to say to him? The next time I see him, two months later, he says, “Well, what’s going on?  Why can’t we get together?” So I tried to explain: “Well, my husband has this illness, Multiple Chemical Sensitivity, and he can’t come into your house, and people can’t come into our house if they’re wearing perfume or have shampooed their hair with a fragranced shampoo.” And all this year Michael’s health has been up and down, up and down, and the guy, every time I see him, he says: “Well, when am I going to get to meet your husband?” I feel like he’s a ghost, he’s not really there.

            It’s very difficult to understand, very difficult to explain to people. It’s difficult for me. I’ve been married to the man for nine years. I see reactions happening with my own eyes, and it’s frustrating. It’s frustrating to say, “Dammit, you know, I got a sniff of perfume, or there were pesticides on the peach I ate.” And then he’s down, he’s down and he’s out, and that’s frustrating. How do you live like that? That’s what it is. Totally, unadulterated, flat-on-your-back illness. It’s crazy to live with that but you have to live with it, I mean he’s my husband. We’ve made a commitment to each other, and the illness won’t last forever. The more I work with him, the better and the quicker he will get well again so he can function on a day-to-day basis.

*        *        *        *        *

I had to tell this man who works very closely with us who wears aftershave or cologne to please not wear the cologne because every time Michael gets next to me after being around someone who is fragranced, he becomes extremely irritable and can have starbursts of anger. For a long time I didn’t understand what was happening, but now I know not to take his anger personally. I just realize that when he smells something fragranced on other people, he gets extremely irritable very quickly, and I have to say, “That’s what’s happening, so you don’t need to yell at me.”

*        *        *        *        *

Michael’s update, October 1999

 Looking back with a clearer head, I believe my chemical sensitivity started before my active pesticide use but was greatly exacerbated by it. When I was a child, my friends and I used to ride our bikes after the trucks spraying DDT in our neighborhood; we thought it was fun to dart in and out of the mist coming off the truck. Perhaps that was the origin of my chemical sensitivity, but that’s hard to determine.

            The good news is that after more than ten years wrestling this MCS, it seems to be clearing in the same way it started, slowly, almost immeasurably until a milestone is passed. I can now visit my children’s school, ride in most cars, and go in some stores. I also have the energy to play with my sons. As of this writing, I am attempting full-time work for the first time in almost six years. My little victories are unseen by most, but the cumulative effect is that many symptoms have improved. I tread very carefully, however, around anything that might set me back. When the setbacks comes, I rest, regroup, and get off the canvas. Faith and determination are my allies, clean air and food have helped tremendously.