Community Spotlight:
Vanessa Edgington
How did you learn you had MCS?
It was September 12, 1989, a drought year. I lived on the family farm and our home was infested with crickets, as well as other kinds of bugs trying to get to some kind of moisture due to the dryer climate that year. We were eating with them, bathing with them, sleeping with them, and they were in all of my cupboards. A local pesticide company came to spray and get rid of the infestation for us. We were at work when they came, but when we got home from work, the smell was horrible! My husband had gotten home 3 hours prior to me and had opened all of the windows so that the smell would dissipate. It didn't. It was very strong. A little while later, I gave my 2 year old son, who enjoyed running around the house naked, a bath. I cleaned up a puddle I thought was a little "piddle" from him. But, after I held my hand up to my nose I immediately could tell it was not urine, it was the chemical that was sprayed. So, I went to the bathroom and got a towel with soap and water to clean up the mess; all the while keeping a sharp eye on my son to make sure he didn't get into it. I wiped it up and quickly washed my hands and placed the towel into the laundry. To myself I thought, "Oh boy that was a close one, good thing I caught it before anyone got hurt." I was very naive at the time and literally thought that you could only have problems with pesticides if you inhaled it or swallowed it. I trusted the company and everybody else. Besides, they all told me it was safe. Why shouldn't I trust them? I had no clue.
The next morning, I woke up groggy and realized I had a puddle of drool on my pillow. This is something I'd never seen before on my pillow. I shared that with my husband and he blew it off by stating: "Oh, I do that sometimes too." So, I shrugged my shoulders and got up and performed all of the chores I'd done every morning to get everything ready so that I could get my son off to the sitter's house and myself off to work. I don't really know how I got it accomplished. Soon, diarrhea developed. As the day/s went on, I began experiencing many other "weird" symptoms. My head felt very heavy, everything seemed out of focus, and I couldn't concentrate. I experienced tingling, prickly sensations - like pins and needles, headaches, nausea, weakness, and eventually muscular twitching, tremors, severe fatigue, impaired gait, and poor coordination, which was very difficult for me because I was an aerobics instructor and lived a healthy life. During this time I also found out that I was pregnant with my second child. People often wrote off my symptoms as a side effect of the pregnancy. "Oh, it's just your hormones, you're just having a difficult pregnancy."
However, I was scared. By November of 1989, I had finally scheduled an appointment with a neurologist because all of my symptoms seemed neurologically based. I just wanted to know what was going on with my body. The neurologist tested me for ALS (Lou Gehrig's), multiple sclerosis, Lyme disease, Lupus and other diseases along those lines. All tests came back "normal." Remembering the smell of the pesticide and the timing, I specifically asked him, "Could a pesticide cause this?" His immediate response was "No, no, no, these chemicals are safe, you just need to learn how to relax." I sighed a sigh of relief and went off to receive therapy for relaxation while still trying to do the many things I was used to doing all day everyday. The therapy proved to be of no assistance to reduce my symptoms.
By February of 1990, I was accepted by Mayo Clinic, where a complete work-up was done again. Two departments worked together - a Medical internist and a neurologist. I shared all of the same information with them that I had shared with the first neurologist. This time, I actually had the name of the pesticide that was used (Dursban). I was diagnosed with organophosphate overexposure. I had no clue what that meant, "Organo-what?" However, I was glad to know that Mayo Clinic finally found SOMETHING that was wrong with me.
When I got home, I went to my son's pediatrician and told him that I didn't care about myself, but I was very concerned about my son and my unborn child. He said that it was out of his league and offered to send me to the only toxicologist in the state with my son to see if he could help us.
I was surprised that the toxicologist focused mainly on me. He repeated the tests I'd had and a few more. He told me that I had Multiple Chemical Sensitivities as a result of organophosphate overexposure. Worse, he said that we had to move out of our home or I would continue to get sicker because the amounts of the pesticide that were still in the house. My body simply couldn't handle more exposure. We had our home swab tested by the state department of agriculture and the puddle I had cleaned up had left a stain 8 inches in diameter and 18 inches away from any mopboards. That swab and many others throughout our home came back as Chlorpyrifos, the active ingredient in Dursban. The pesticide applicators claimed to have done crack and crevice application. The state department of agriculture or perhaps the applicators must have informed Dow Chemical that we had problems with the chemical, because I received a phone call from a public relations guy working for Dow, who informed me that I would have had to have gotten down on my hands and knees and literally lick the mopboards immediately following application to be as sick as I alleged to be. I'll never forget that call, I thought it was very odd at the time.
We tried to live in several different places and were basically homeless for 6 weeks. We ended up moving 7 times the first year. During that time, we looked into litigation. The attorney informed us that he wanted me to see two other physicians from another city that he had heard were very good in the court room for victims in toxic tort cases.
I agreed to see those two physicians. The first was an internist specializing in toxins and poisonings and the other was a neuropsychiatrist also assisting people like me who had been poisoned. The gamut of tests there was almost unbelievable, however the result confirmed those of the Mayo Clinic and the Toxicologist. I was diagnosed with multiple chemical sensitivities as a result of organophosphate overexposure, which attacks the cholinesterase enzymes, most of which are in the brain. Cholinesterase enzymes assist with the synaptic impulses and that is why I was having the nerve- ending problems and other neurological problems. I told them to give me a shot of Cholinesterase, so I could get better and get on with my life. They told me that was an impossible task. Avoidance was the only thing and supplements like B12 injections and other anti-oxidant regimes would have to be followed. Regular follow-up appointments would also be necessary.
I delivered our second child in May of 1990, 3 weeks early and 1 and 1/2 pounds smaller than our son. She also appeared to experience what looked like a shaking withdrawal of some kind. She would only stop shaking if she was wrapped up very tightly in a blanket, but after a few days that subsided.
With our litigation underway, a new baby, all of the moves, and being very ill, I could only work 2 days each week. Even that was difficult. Of course, rumors spread like a wild-fire and any reputation and friends I had went down the drain. I was the "crazy one" now, the one to gossip about in our community.
Our litigation, which was not against Dow, ended 4 1/2 years later with a settlement out of the courts for an amount that did not even begin to pay for and medical expenses incurred up to that point. Our attorney took 40% of that.
How has MCS changed your life?
That's a loaded question for someone who feels as though they have
lived "hell on earth" after being poisoned.
I lost my faith.
I lost my reputation.
I lost my health.
I lost my home.
I almost lost my job.
I lost my patriotism.
I lost my self-esteem.
I learned to distrust.
I actually learned the feeling of hate for the first time in my life.
I lost out on the opportunity of being the mother I'd planned on being for my baby because I was too sick to even take care of myself, let alone my baby. I did the best I could.
I didn't feel worthy of my husband's love and felt like I'd only be a burden. I told him to take the children and find a healthy young woman who would not be a burden and who could take care of our children. I just wanted to fall asleep and not wake up. I prayed that if I wasn't supposed to make it through this horrible experience, please take me tonight, because I couldn't handle it anymore. I woke up the next morning.
I did everything I could possibly think of to try to make my husband leave me. After two years, he finally placed his hands on my shoulders and said, "Vee, you just don't get it do you?" I stood there with a blank stare. He continued, "When I said my vows I meant them, I love you and I'm here for you. And by the way, do you know that song, Thank God for Unanswered Prayers? I think of you every time I hear that song." Wow, the Good Lord has truly blessed me with the wonderful love of my life, my soul mate, my husband.
I used to be full of life everyday. Now, I have mostly bad days and on the good days I can get pretty wild. I really enjoy every moment of those days. It's the little things that God has blessed me with. My faith returned, only much stronger. When I get wild, I act goofy; I like to dance in the rain; I like to play board games; and, I like to laugh with my mouth open and sing in public! I don't care who can hear me! Life is short; break the rules; forgive quickly; kiss slowly; love truly; laugh uncontrollably; and never regret anything that made you smile. "In this short life we have, I feel that we should all take time to sing, play and dance."
I guess I could say I know my life changed full-circle when the eyes of one of my sister's, to this very day, will well up with tears and state that the person she grew up with knowing as Vanessa, her younger sister, was now a totally different individual in the same body, someone she had to get to know all over again.
Last year, I lost my job because of my health and I am not receiving any form of disability. Now, I am fighting to get some kind of insurance company to cover me before insurance through Cobra runs out. My mom asked me what I'm going to do when the Cobra runs out. I said I guess the boat to Guantanamo Bay is looking pretty good. I don't really know, I'll have to keep searching.
What is the advantage of having MCS?
I truly don't believe there is one.
However, because I was poisoned at a young age and experience difficulties with MCS on a daily basis, I have been able to keep my children (as much as possible) from pesticides and other toxins. I have been able to teach them about toxic substances and they have experienced life with a person who has MCS, so they are aware that they don't want to live their lives that way.
When I was first told that my cholinesterase levels were below normal , some people tried to say that my levels could have always been below normal. I had my children's cholinesterase enzyme levels checked and recorded so no one could ever say that to my children.
I have a better understanding for all who suffer from any kind of disability that is "invisible" and don't receive any help. I also try to help them as much as possible.
My faith has grown.
Are you involved in any activism? If so, what do you do to get the word out?
I am currently a member of Multiple Chemical Sensitivity America and am working toward getting more signatures on the position statement. I have also assisted in editing some of the information.
Whenever possible, I try to educate people about toxins and their affects so that they won't have to experience what I am going through. I really, really care about others' health, especially that of my children and that of future generations. I know, it's not about me anymore!
I've had phone conversations and emails with the State Department of Health and am trying to provide them with research to assist them in making safer choices in regards to what communities can do, other than just going out and adulticiding, when it comes to working on the concerns about mosquitoes and the West Nile Virus. I've asked them a lot of questions to get them thinking and have tried to see if they'd be willing to place a copy of the labels of the products being used in the communities being bombed with pyrethroids. People need to see the potential hazards and symptoms of poisoning in case it does happen, so that the members living in those communities, as well as physicians, could make more educated decisions and become a part of that decision making process. I simply feel that if the general population knew what I now know, they would not want adulticiding occurring in their communities let alone near their homes. This continues to be a project in process, though I have not worked on it recently. However, I will continue.
What do you think is the most important thing the MCS community must accomplish?
Quite frankly, I think we need to work together more. I believe all our end results are the same. I don't know who said it, but, "Divided we fall, United, we Stand!", which means to me Divided we fail, United we Succeed!
So, let's get it together, treat each other as we would wish to be treated, and work massively as one to get MCS recognized as a very real physiological illness! Too many people are too ill, dying while waiting, and more new MCS diagnoses are being made.
Do any of us have that much time? Do we really want our children and grandchildren to live the lives we're attempting to live with this illness because it is not getting the recognition it deserves?
Would you like to share anything else?
Lord knows that for me, yesterday would not be soon enough for this illness to receive the recognition it deserves, so that all of us could receive the appropriate treatment, and perhaps even live a better life.
It is my prayer that we will become more united so that we will succeed. Fighting amongst each other is exactly what the chemical industry, and everybody else who does not want MCS recognized, thrives off of. Call me confused, but isn't recognition of MCS as a physiological illness the goal of all of us?
Editor's Note:
The artwork presented in this article was created by Vanessa Edgington. The artwork is used here and in MCS America's Café Press logo shops and is reproduced with permission of the author.
Copyrighted © 2007 MCS America
