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HEALING STORIES

Atlanta HEAL members share their stories:

"Facing My Fears"  by Ian Greenberg
"Living With MCS"  by Joyce Taylor
"You know you’re chemically sensitive when . . ."  humor by Ian Greenberg

Facing My Fears

I am sitting on an airplane at the start of a 12 hour flight.  As a person with multiple chemically sensitivity (MCS), being “trapped” in a confined space with bad air quality for such a long period of time is probably one of my biggest fears.  It was a difficult decision to take this flight, given the physical nature of my condition, but I am beginning to separate the fear component.  Some time ago, I learned that fears like to hide in dark places and when confronted with the light of day, they begin to lose their power.  My battle with this “demon” started when I booked my air ticket.  I looked the demon straight between the eyes and declared “I don’t care how sick you make me, I’m going and that’s final!”.  It is interesting that the next few days I began to feel much better and some of my anxiety dissipated.  Now, as I listen to the roar of the aircraft, and the comforting hum of my portable air purifier, I realize that I will develop physical symptoms with this kind of exposure, but I know that if I can stay calm, I can make it.  This is my challenge.
 

When I first realized that I was chemically sensitive, I was incredibly relieved as years of unexplained symptoms, which seemed random in nature now had a label, a category which I shared with many others.  At last, the healing could begin.  My initial elation was short-lived as I realized how psychologically unprepared I was to deal with this condition. 

The very nature of my existence began to change.  I had read about everything I could find on Multiple Chemical Sensitivity (MCS), and I soon realized that the best way to stay healthy was to limit my exposure to chemicals.   Never before had I realized how chemical our world is.  Every facet of my existence seemed to involve some sort of exposure that would make me sick. 

The first big change was my job.  I could no longer work in most modern office buildings, so I had no choice, but to quit my job and start my own business working from home.  Being a computer programmer, I was fortunate that I was in a line of work that could be done from home.  What I found is that the business world was not quite ready for telecommuting.  Even though the technology was there, this was largely a trust issue.  Feeling that the world did not care about me and being unable to find “healthy” work, depression set in.  I wanted to be a contributing member of society and I had the right tools, personality and drive, but my MCS made this difficult.  The “victim” role was one I was familiar with, so this was the persona I adopted and, although I took some comfort in it, it was definitely a one way street. 

For many of us a drop in income can feel like a huge loss, not to mention what it does to your  self-esteem and for me it was no exception.  Even though, I had some savings and my expenses were low, I still felt the impact.  The next thing that I had to deal with is my social life.  I did not want to go to parties because this was just a haven for fragrances and chemicals of all kinds.  My loss of freedom became more profound as I discovered more and more activities that I had to surrender.  Fortunately my family was very understanding and we could all get together without my getting sick, even though it took a lot of education on my part.  Feeling the need for companionship, I set out looking for a “natural” woman.  Despite the popular song, decades of relentless advertising by fragrance and chemical companies had taken such a “creature” to the brink of extinction.   I soon discovered that those who really care about you, will be happy to make these changes so that they can be around you.  I also realized that even though most people are supportive, there are those who are not going to "get it" and it's best not to waste too much time trying to convince them.

What I found out is the trait most needed to survive chemical sensitivity is self-esteem.  Besides believing that even with this condition I am a worthwhile person, it comes into play when you try to communicate your needs to others.  Initially I was in denial and did not tell people about my condition.  Inevitably, I would become exposed and then get really angry at myself for not having said anything.  I would go to gatherings being fearful that some incredibly “toxic” individual would be present.  Eventually, I could not take this kind of fear anymore and despite a lot of embarrassment on my part, I started communicating my needs.  People were really receptive and this helped a lot, but it really took the spontaneity out of life.  

Initially, I formed an instant dislike for the more chemical amongst us, and tried to only be around “natural” people.  I have always been environmental, but feeling the connection and the destruction first hand, I became even more so.  Our overuse of chemicals is making some of us sick and this does not bode well for the rest of the world.  Even though modern medicine has made great strides in treating a whole range of illnesses, “environmental” illnesses such as asthma, chronic fatigue, cancer, allergies of all kinds and chemical sensitivity have increased exponentially.  Unfortunately, as a culture, we live in denial and have not yet figured out that our lifestyle is causing these problems. 

Having MCS is a constant struggle for survival in which you will test your limits on a daily basis.   Yes, you will lose friends as there are those who will find it too difficult to be around you.  On the other hand you will find out who your real friends are and these relationships will deepen as you grow together through the experience.  It is through this spirit of survival and support that I decided that I simply could not give up my desire to travel.  I

had been wanting to take a trip overseas for a long time and when the opportunity presented itself, I could not pass it up.  So, deciding to face my fears, I said a prayer, asked my guardian angels for help and booked my air ticket . . .


I am jolted back to reality by an announcement from the captain.  We are almost at our destination.  I can’t believe that my 12 hour ordeal is about to end.  Even though this trip has been hard on my body, and I have developed a whole range of physical symptoms, I feel elated.  Fueled by my excitement of spending quality time with loved ones and visiting some wonderful places, I finally realize that I am no longer a victim, but a survivor and as I continue to struggle with being chemically sensitive, I have faced my demon and this time the victory has been sweet.

Ian Greenberg


Living With MCS

I have been sensitive to certain fragrances and cigarette smoke for years. However for the last two years, I have had full blown MCS. I can no longer fill up my car with gas due to gas fumes. I can  not read a newspaper due to sensitivity to newsprint. Paperback books are out as well. My husband shops in the stores for me as I can not go into stores due to sensitivity to all of the fragranced products. I can no longer go to Church,  as Sunday is the single most fragranced day of the week. A naturopath believes that I went downhill and went full blown with MCS when we moved into a new house two years ago. To make matters worse our daughter who lived with us as well at the time also developed hypersensitivity to fragrance and other chemicals. I can no longer work but my daughter who is in her early twenties is struggling to work with a sympathetic boss. I also worked for several chemical companies in the office and I had no idea that the environment was posing a harm to me.

We also had our prior house sprayed with pesticide for 15 years. I am sure all of this has played a roll in my condition. Trying to stay at a motel/hotel on a trip is a process, going to check out many rooms to find one that I can stay in overnight. I am sick of professionals telling us that it is a psychological problem. Can you imagine that your lifestyle is affected in this way and not have some psychological issues. My current MD appears sympathetic but has no clue into the condition. He gave me the best advice which he could and that was to become an expert on this condition. 

My husband and I have spent hundreds of hours on the internet and had no idea that this condition was so prevalent in our society. For example, perfumes have more in common with gasoline than any other product.  The manufacturers don't have to tell us any of the chemicals that are used since they are protected by "trade secret laws". If women only knew what they were putting on their bodies, they would not continue to be so cavalier about the growing use of these uncontrolled and unregulated  toxins.  They have no idea that the  fragrance they are so selective about and pay such a high price for are full of unidentified toxic chemicals.  The days of perfume from natural sources such as flowers, herbs, and plants are gone forever.  

I can recall a time that I could go to a shopping mall. Now that is impossible.  All of the major department stores have enormous displays of every perfume and cologne imaginable.  The noxious odors permeate the entire mall area.  They are always at the major entrance to the store so you have to run a gauntlet to get into the store if you can still go shopping. 

David still works in an office with a large group of women who use fragrance.  When he comes home he has to hang all of his clothes outside in the garage and take a shower.  Even if he does not wash his hair,  the fragrance that is attached to his hair causes me discomfort in my sinuses. 

If we have some type of need for a repair person to come into the house, just the fact that they use a fragranced  detergent gives me a headache.  These people look at me like I was from another planet.   Imagine trying to explain all of this to a doctor who doesn’t have the foggiest notion of what I am talking about.  No wonder we become labeled as having psychological problems by a community of doctors who are both ill informed and uncaring. 

Recently a group of women from my former Sunday school class wanted to give me a surprise birthday party in January.  These women all know my problems and have stayed away from me not because they did not care but because they just did not know what to do.  They approached David and asked how they could become “unfragranced” for an evening.  David and my daughter purchased fragrance free soap, cut them into smaller  pieces, also fragrance free shampoo, and free detergent for clothes.  They made up kits and provided a detailed list of instructions, no hand cream, no jell in hair, no hair spray.  They came “au natural’.  It turned out to be a wonderful evening of fellowship and fun. We had not seen each other for years.  I cannot tell you what a positive impact it had on my psyche. 

We are very fortunate to have a support group in Atlanta-  Atlanta H.E.A.L.  Even though we may only meet monthly, the fact that we have a common bond against a common enemy makes my life more bearable.  

Joyce Taylor


You know you’re chemically sensitive when . . .

Ian Greenberg