When did you get sick and what made you sick?
Melody: I have been sick for a long time. I don’t know exactly for how long. It started off with when I was little. I would get car sick. Then I went to high school. The school was a sick building, a new building. Mine was the first class to go all the way through that building: New Carpets, new painted walls, everything was new; no windows open… That’s when I started getting migraines and being exhausted all the time. I was depressed and nauseous, all kinds of things.
Then I started working in an office building with new carpets and new painted walls. I started having stomach problems, being dizzy, feeling out of it. When I had to make photocopies, it would take me all day cause it was in this tiny room with no ventilation at all. Everyone thought I was crazy. I eventually left there because I was so sick.
I was on drugs for everything. I kept going to doctors and they kept saying take this… and nothing worked, it usually got worse.
Before we moved up here to Massachusetts we were living in the suburbs about half hour away from New York City in central New Jersey in an upper middle class neighborhood. There was no privacy. Your house should be the same like the others. You would put your kids in chemical diapers, spray your lawn, you conform. We moved there because my husband could earn twice as much. This was our compromise: We said we would safe money and then we would move to a place we like.
I stopped leaving the house. We had to go seeking out food we could eat. I had to order food online. Once I counted all the signs that say “pesticide spraying” in the two miles between my house and the library: There were over 30.
Not long after we moved there, I was in the house sitting on my computer and my seven-month-old was sleeping under the open window. And outside was my neighbor with a gas mask, spraying the trees outside my window… Before I thought: as long as I can just keep my house and garden safe – and then I watched them spray over my garden. That was it. My baby and me got really sick! We called the chemical company, and my neighbors apologized. But the best we could get was that they would call the day before they would spray! Every three weeks they would call us and say that they would spray. Every time they sprayed, every 3 weeks me and my boy went to my mothers’ house for a week. Still every time he would get sick. And the whole point was that we would safe money and then move somewhere were we were safe!
So we moved here (MA) four days before my due date with my second baby. We moved into that house and said: That’s it! No neighbors! We can create our own environment and safe world. After two weeks he was born and we started living here. And then we started getting sick again.
It got to the point where I stopped being able to function. We had an air quality tester come in. At that point the boys and I were sleeping in the yard in a tent. So we had the tester come in and test for mold. Our house was killing me. That night we learned I wasn’t being able to live there anymore. So my husband cleaned out the room furthest away from contamination and sealed it off and put a strong air purifier in there and that’s where we are now. We are stuck.
When was the first time you realized you were really sick?
Melody: When Katherine told me I have MCS. I never knew what was wrong. No one could tell me. People kept telling me: Eat better! So I ate better. Exercise! So I exercised. But it doesn’t help if you go jogging on lanes that just have been pesticide sprayed.
At some point I realized that my children had been acting aggressively and way out of character. But it wasn’t until I met Katherine a couple of days later, that it finally clicked.
Now it’s other people that are the problem. It’s not being able to leave the house that I am not even supposed to be in! We have to find a new house. It’s not being able to see my friends, my family, not being able to go into public…
I have two boys, they are two and almost five. After we painted inside the house, the little one woke up in the middle of the night screaming. You couldn’t talk to him and he wouldn’t tell me what was wrong. It was like that every night. And Ian is this sensitive boy! He started fits, he would break things, hit his brother, hit a whole in the bedroom wall. It only occurred to me later that it started around the same time as we painted: my nausea, headaches… And we didn’t even finish the whole room. We painted part of our dining room. To this day it is still not finished, very annoying. We used a natural kind of paint! For patching the hole I had a special compound, and I got the low VOC primer. But then we bought the regular latex paint and we painted our dining room, which is on the first floor, far away from our bedroom. We painted three walls.
Are you seeing a doctor, are you getting treatment?
Melody: Yes. I go to a doctor and it was very helpful the first time. It was pretty validating, the first time someone said, yes, there is something wrong with you, and it’s not all in your head. You are not crazy. Because I spent my whole life thinking I was crazy and being told that I was crazy.
But that’s more or less what they can do for you. I am supposed to go back every couple of weeks, but I don’t need to hear that this is what is happening.
So I take supplements and herbs. I have tried homeopathic remedies, and I am talking to an herbalist friend of mine about starting a new program. You’ll try anything! You just go down the list and see what works…
What changes have you made since you know you have MCS? Did you start using different products?
Melody: Truthfully I started that a long time ago. I have done it for many years, when I got pregnant with my oldest, after I lost a baby. That year I was working in the (sick) office building and I lost a baby. I started obsessively doing everything to protect me and the baby. I switched to organic food before I was pregnant, six years ago. I switched to healthier eating habits. I switched to natural detergents, natural soaps, all of those things. So that’s the thing, actually, what’s kind of funny! In the end it was the mold in that room, that got me, because everything else I removed myself from, so far as to that I didn’t get into the car more than once a week.
Has your family been supportive?
Melody: My husband understands and he is supportive, very supportive. But at the same time he has his own life style issues. My extended family, my parents and my sisters are far away in Pennsylvania. My mother tries to understand and she is worried. My father thinks I am crazy.
How has this whole experience effected you and your believe in society?
Melody: I have some issues with this society! People used to joke that I wasn’t supposed to be born in this time. This world scares me. There is no place that is safe for me and I have this two precious children.
That’s the thing: It’s not me, my fault, my body that is dysfunctional. But our society is so removed from everything that is natural, that is whole, that is good for the body and the mind and soul. There is none of this left.
I have this friend, we have both been sick since we are 13. We went to the same school! So I ask myself: What could I have done differently? Why do I deserve this? Just looking at the world, now I think: How was I not sicker sooner? It’s not just physical. We feel the physical manifestation of the pain of the earth.
I am part of a natural parenting group. They hear me to a degree. I have looked for MCS groups but I haven’t found any that struck a cord with me. My situation is a bit different than of most other people with MCS because I have two young children. Raising my children and protecting them is a big issue. Thankfully I have a lot of resources and contacts here. But that’s the catch. The people who understand, are sick themselves. You can’t unload all your baggage onto them. So the only people who can understand, don’t hear you either…