How did you first learn about Multiple Chemical Sensitivity?
Katherine: In 1997, three years before my body “crashed,” I looked up two words on the internet. I didn’t know that they were linked; I just knew that I was starting to react to chemicals. So I did a search using the words “sensitive” and “chemical” and discovered that there was actually something called CHEMICAL SENSITIVITY. Because of that, I knew there was a condition with the name, but nobody really explained to me the process of the illness… Now there is so much information being exchanged, but there wasn’t much when I got sick.

And when you are reacting to your environment - the reaction that you have to an obnoxious odor is a thousand times more than a normal person would have. But I told myself, ‘Just get over it! COPE! You’re just being neurotic!’ I also thought it was kinda “cool” to be hyper-aware, because I thought I was just special or something. But because I had no idea what was really happening, I got sicker and sicker.

What caused your illness?
Katherine: Looking back now, I can see very clearly that I was somewhat sensitive most of my life. I know that my mother took certain pregnancy drugs and that they chemically induced my birth. But when I was six years old, we moved into a totally new house with new carpeting. I remember having effects from that, but I didn’t know that I was reacting to something. A few unexplained things became very clear when I began looking back with awareness. For example, I spent seventh and eight grade in a brand new, air-tight, super-sealed, energy-efficient, carpeted, toxic-materialed school building. In college, I gradually started having (relatively common) health problems, and thus, it raised no red flags, but I can see now what caused them. The more severe life effects began in 1992, after I graduated from college. So that’s 11 years ago. I quit graduate school because of it. I didn’t know that I had this problem, so I continued to expose myself (new car, new carpet, new paint, etc.)

The biggest and most long-term exposure I had was in an apartment in Yonkers, NY with a new carpet and an un-maintained, leaky natural gas heater (from 1963) in my living room. And natural gas is full of additives. You mix them all together, create this synergistic toxic crap, and then combust it. Not healthy. I found out later that the heater wasn’t at all to code, it was improperly installed, and that you’re not supposed to have a combusting furnace in your living space. But I, totally ignorant, lived there with it, getting sicker and sicker, for six and a half years, even though I was living a really healthy lifestyle. The health problems just kept building, and I just kept adapting to them - because allergies and colds and sinus infections and that kind of thing are common. And my doctor basically said: “Oh, I don’t know why you are sick, but here, take these antibiotics!” I never tested positive for infections. These doctors don’t try to actually solve the problem, just treat the symptoms.

One of the worst symptoms was the sore throat. It was excruciating. I would wake up every morning choking and gagging on what I now know were mucous plugs. They called this “sinus problems.” Sometimes my nose would just start bleeding. At one point, I couldn’t stand up from vertigo. I started reacting to foods … was always severely bloated. And even though I was eating well, I wasn’t absorbing nutrients. I was having memory problems and serious difficulties concentrating. Eventually, I developed chronic fatigue. I would sleep 10-12 hours a night and wake up exhausted.

I couldn’t afford help from specialists, they were all too expensive. I remember faxing a letter to one place in Connecticut and listing my symptoms from when I was little, when I was young, and the growing current stuff. I all but begged for help, asking to financially work something out, and I got no response. I also looked into a clinic upstate, but they didn’t take insurance. So I kept seeing this doctor I had from college, because she would let me pay over time. She did no investigation into the source of my problems, but repeatedly prescribed things that exacerbated my symptoms, and weakened me further. And of course, I had a lot of symptoms that our culture considers “normal.”
I have a very different perspective now, and what it means not to have money in this culture.

Slowly, I found that I could control some of my symptoms by standing away from certain things. For example, I was starting to react to cigarette smoke. I had this unbelievably bad sore throat, and at some point, I decided not to be around second-hand smoke and the pain lessened quite a bit. That was one of my first ‘Aha!’ moments. I also noticed that I was getting more sensitive towards people’s perfume. I noticed that I started smelling things from down the street. I thought it was because I had quit smoking or something.

How long did you smoke?
Katherine: On and off for 10 years, from about age 15 to about 25. I knew I had to quit at some point, but I had to quit earlier than I was planning to because my body simply couldn’t handle it anymore.

So it wasn’t one exposure that made you ill, but an accumulation of many?
Katherine: For some people it hits all at once: one minute you are fine, the next you are desperately ill. With other people, it creeps up. It basically crept up on me, until I crashed. This illness is a lot like going down stairs … For a while, I went down one stair at a time. Then, I fell maybe two or three stairs. With each step, I became more sensitive and less functional. And finally, in the year 2000, my big crash was like falling down a whole flight of stairs and hitting a brick wall.

I ran out of unscented Amway laundry detergent and bought one at the store I remembered my mother using. I don’t know how long it took me to figure out that I was reacting to this stuff. I remember sniffing all the dryers at the laundromat trying to find one without fabric softener and I would use the least smelly one. Then I would get home and my clothes would still smell. It was really traumatizing because I couldn’t wear my clothes. I tried washing them in the tub, but because I didn’t realize it was MY detergent, it didn’t help. I didn’t know what was going on until I picked up the bottle of detergent and smelled it, and I was like, ‘Oh god, it’s this!’ Then I wanted to buy natural detergent, but I couldn’t really afford it. But it became necessary.

At this point, I still didn’t know what was happening to me! I was hospitalized twice, and the doctors just gave me tons of medication. I was smart enough to know that drugs weren’t the answer, they only made me worse in the long-run while temporarily repressing symptoms, or I had immediate side effects.

So then you moved away from Yonkers?
Katherine: In 1999, I finally decided to move out of that apartment. I was still able to function but I was having a very hard time. I moved temporarily into my friend’s house in Greenwich, CT, which is heavily pesticided! Over the years, they treated the house many times for termites. Everybody in that neighborhood treats their lawn with pesticide, and it was next to a golf course, which they sprayed regularly. They also liked to bomb the pond with algaecides. And while I was there, in July, I got into a car accident. So I am living in this place, and I can’t work anymore because I am flat on my back. I am on painkillers, muscle relaxants, and antacid for my stomach. The only thing good about subsequently losing my Manhattan job was that I didn’t have to commute on the train with all the cologne-wearers, and smelling diesel every day.

I ended up staying in Greenwich for a year. While I was there, they sprayed for West Nile. They came through with trucks, kind of like in the old DDT days, and sprayed aerially. It didn’t feel very democratic to me. Nobody asked the population, ‘Here are the facts, what do you think?’ Instead, it was a political decision by Giuliani in New York and all the surrounding states followed suit. It is illegal for the companies who make those chemicals to say they are safe, yet politicians stood on the news claiming the spraying to be harmless to humans. Meanwhile, it kills the crap out of insects by destroying their central nervous systems! People said to close your windows, turn off your AC, stay in your house when we’re spraying, and maybe bring in children’s toys or rinse them off if they are outside… I should have left town but I went about my business.

So I got exposed to Scourge in Connecticut, Anvil when I was in Westchester, and whatever else was floating up from Manhattan. Within a few hours, I couldn’t sit down because I had so much abdominal pain, and I was bleeding vaginally. It wasn’t my period. For 17 years, my menstrual cycle was exactly the same, to the DAY. The pesticide exposure totally damaged my cycle. I now ovulate and bleed on different days, and they change monthly.

Several friends got bronchitis after the spraying. My friend’s daughter had migraines and vomited for two days after they sprayed over her house with the plane. When I put all this together, I was like, ‘Wow, this is all much worse than I thought.’
Finally, in 2000, a whole series of events happened in one week and I really, really crashed hard. That’s when I ended up moving here (MA). It took me nearly a decade to fully crash. If I only had had some knowledge and proper medical care in 1992, I wouldn’t have had to go through that … or lose all that I have lost.

What happened in this week of your "crash"?
Katherine: I tried to start a new part time job. I was going to be an administrative assistant at Morgan Stanley. I was all excited because I missed having a job after the car accident. I was able to take the job because nobody in the office wore perfume (the manager got migraines from it). A major part of my job was copying: I was supposed to do about ten or twenty minutes of copying each day. And the copier was this huge, fancy machine in a very small, enclosed space. I think it was actually a closet. So the first day I was copying and started to get lightheaded. But I had only ten copies left, so I kept going because I couldn’t walk out and not have the pile finished! When there were only two left I had to leave the room because I was about to hit the floor. I went to the manager and tried to be cool while I was explaining it. And then I went outside to get some air. There I was, outside, with all the exhaust… I didn’t know what to do.

I tried to go back next day. We tried to work it out. And the thought crossed my mind: ‘You have to accommodate me; I have a disability of some kind.’ But it wasn’t worth having the argument with them and trying to fight it… I was so sick by the third day we mutually agreed that I just couldn’t do it. I wandered around and tried to do my errands afterwards, in a daze. That was the last day of attempting to have any normalcy ...

Later that day I went with a friend to a meeting about stopping the spraying for West Nile in Connecticut. We took her father’s new SUV with all new upholstery inside. When I opened the car door, I remember this wall of chemicals hitting me right in the face. But I thought, ‘I can do it! I can handle it!’ Because I WANTED to drive that new SUV. Shortly, my throat became sore and full of mucous. I suddenly realized I hadn’t been spitting all the time after moving out of the toxic, natural gas apartment. We drove north on the highway with all the windows open for thirty minutes, something I never do because of the trouble I have with diesel. I kept filling with mucous, choking, hacking and spitting. I have never been the same since that day. That was the last straw: That day, that car ride. My body crashed. I was never the same again. Life was never the same…

I couldn’t do anything anymore. I couldn’t touch municipal water anymore. I had to order a water filter immediately. I couldn’t shower. I had to filter the water in the shower because it was full of chlorine… I couldn’t touch it. My skin would burn and burn.

That day, everything was very different: Because then I couldn’t pretend another minute that it was me; I couldn’t pretend another minute that it was psychological; I couldn’t pretend there was some way around it; I couldn’t pretend I can deal with this. There was no argument left. I was pushed way past the point that I could justify, rationalize or use any one of the million rationalizations that this culture feeds on, talks about and lives in every day. That’s what I was saying about what I want to be true and what this world tells me is true, has no bearing on reality. Reality is what it is. It’s a separate thing. I am chemically sensitive. There is nothing I can do about it. That’s why I said it took my ego…

So it builds up and then you get more and more sensitive, so sensitive that the smallest amount of a chemical makes you sick?
Katherine: If I hug someone with cologne or after-shave on, I get sick instantly. My body can’t handle it, literally. Especially if it transfers to me, and I have to breathe it for a while. A normal body processes it through the liver, takes care of it. The red blood cells work, they bring oxygen to your body. It functions. Not people with chemical sensitivity! It stores (the toxins). It circulates. It interferes with your red blood cells. You get a low-level hypoxia, so you don’t have enough oxygen in your brain.

Chemicals affect everyone. It’s just about how it manifests. My favorite uncle died of cancer… They did a study and found out that only a small percentage of cancer is genetic. The rest can be directly attributed to the environment (pollution). And it’s on the increase. And look at all the people with asthma, learning disorders – but we have adapted and think that having symptoms all the time and taking drugs to treat them is normal. Not everybody crosses the line like people like me. But once you crash, once you cross a line, there is really no way of going back.

Look at our quality of life. Mood problems, reproductive problems… ‘Oh, my penis doesn't work anymore.’ I say why doesn't it work anymore? People don't want to think about why! ‘I don’t have time to think about why my penis doesn’t work anymore - Just give me the Viagra, I want to fuck my wife. Thanks!’
It’s the American way: We are living longer but we are on a ton of meds…

Can you talk about the psychological aspects of dealing with the illness?
Katherine: The psychology of the human being is to fit in and to be part of culture, generally speaking. We want to have friends, we want to go out in the world and have people like us. We want to participate, be useful. And when you get sick like this, that’s all taken away. But people think you are just annoyed and being dramatic. Because the average person does not know that this illness is very severe, grave, life threatening, life-altering, disabling. For example, I have cognitive problems now and can see sometimes how it can annoy other people. It’s frustrating because it makes you look like you are stupid or you don’t care; like you are not trying hard enough to think clearly, when there is not a damn thing you can do about it…

So it’s been a really amazing learning experience, because now I see how it is to be completely discriminated against! Now I am a minority AND the enemy, too. People like me are political, economic rejects. Our economy is built on making chemicals and pharmaceuticals. My illness threatens that, therefore I am expendable. So you are completely inconvenient, and your reality threatens cultural myths, and nobody wants to hear what you have to say. Many people don’t believe anything that you are dealing with because they are simply being told otherwise. They assume that it just can’t be true, you are just making it up … That’s extremely difficult, psychologically. The psychological, social, emotional awkwardness, the agony of exile and marginalization is unspeakable. It does almost more damage than the chemicals. And that’s saying a lot if you know what kind of damage is being done: Some people die from end-organ failure…