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
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,
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
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
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
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
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
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
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,
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.
don’t believe anything that you are dealing with because
they are simply being told otherwise. They assume that it just
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
die from end-organ failure…