Julie from USA

Julie Genser, photographer, writer and certified holistic health counselor creeated Planet Thrive. Her life was derailed by extensive food and chemical sensitivities brought on by multiple exposures to environmental toxins.

She gave this interview in November of 2006.






How and when did you get MCS?


I became aware I had MCS in September 2004 during a nightmare that unfolded in Washington state and Arizona, where I had gone to study sustainable architecture for a few months. Local conditions—mold, local pollen, daily controlled forest fire burnings, pesticides—brought on severe MCS and I had to drop out of the program after a month. My mother had to come out and fly back with me because I would not go on a plane alone. The suddenness and severity of my symptoms, coupled with the fact that I was alone in a new environment with no social support to help me deal with it was enough to cause Post Traumatic Stress Disorder.


But now I can see the signs were there for years before. I had mercury and arsenic poisoning in the mid-90s but wasn’t diagnosed until 2001 even though I had the classic symptoms. Then in 1998 I was exposed to toxic fumes in a garbage dump fire in Mexico. I developed extensive and severe food allergies a month later, overnight. This is when I became aware I had a systemic problem but was still relying on allopathic medicine to diagnose and treat me. I was in NYC for 9/11 and that also had a deep impact on my health. I lived relatively close to ground zero and the air quality was terrible for months. I started noticing seemingly isolated chemical sensitivities that I had never had before after that.


First it was a reaction to a latex hot water bottle. Then I had an allergic reaction to topical Aloe Vera on my face. Eventually it was to things like wool and synthetic materials in bedding. My sense of smell was very reduced for about 10 years and then around 2003 it started to come back stronger than before. By the time I left NYC in the summer of 2004, I knew I was becoming very sensitive to chemicals but I hadn’t yet embraced the terms MCS or EI for myself. Hearing a diagnosis of Environmental Illness from a local doctor in Arizona was heartbreaking and scary.




What inspired you to create Planet Thrive?


Planet Thrive began as a small idea probably around 2002. It came out of my own struggles to research my health conditions online and find anecdotal information and support from others that were dealing with the same issues. But it was the website Friendster.com that actually caused the germination of the idea. I started thinking…what if there was a site that did this, but for people like me, searching for answers to mystery health issues that doctors couldn’t help with? Instead of connecting people with similar interests, it would connect people with similar symptoms! That was exciting to me and I slowly started to build on my idea.



What's the purpose of Planet Thrive?


Planet Thrive has several intentions, which are laid out in our mission statement. Basically, we strive to harness the collective intelligence that comes from the lessons illness brings us.


The first is to provide an extensive library of first-hand, anecdotal experience with both alternative and conventional healing methods.


Another is to offer emotional support and opportunities for connection to those on a healing path


One of our underlying goals is to encourage home businesses that put human, animal, and environmental health before profits


Ultimately, we want to help educate and inspire others to lead healthier, richer, more fulfilling lives, in harmony with the universe.




What advice do you have for people thinking of starting an Internet group?


Do your research and make sure you are providing a service that is not currently being offered elsewhere. Try to find partners who can share the workload and financial investment, as well as inspire each other to keep going. Believe in your dream, and in your ability to make it happen. Think about the big picture, but take the implementation one day at a time otherwise it might be too overwhelming. Remember that small steps will always add up to big steps.




What is the hardest thing about maintaining Planet Thrive?


It is a lot of work for me personally, on a daily basis. Some days I just don’t feel like doing anything, or my health doesn’t allow it. It would be great for me to have a team of people who were helping input data and maintain the site, and to help inspire me to be productive on a consistent basis.



Do you have people helping you?


I developed, built, and maintain this site on my own. The first few years, I pretty much worked in a vacuum, while I was isolated due to my MCS and had nothing to do all day. I focused on developing my site. As the project grew and became more of a reality, I started sharing my enthusiasm and passion with others. I began to involve other people in the process. So lots of people have helped me along the way and the site would not be possible without their collective help. The company I bought my software from has been unbelievably supportive and helpful on a daily basis—the site would just not exist without them. I have a wonderful team of lawyers providing pro bono (free) legal services. My dad offers advice on business and tax issues. Friends and family have provided feedback on design and content throughout the whole process. A member who has become a friend is helping me with some data input. I have been very blessed in this respect.


What have you learned about yourself from creating Planet Thrive?


I learned that it pays to listen to my inner self; my beliefs, my value system, and that I have something important to share with the world. When we stifle our own voice in order to fit into a society that doesn’t make sense to us, we not only support the disease process in ourselves, but we hurt the planet as a whole. We each owe it to ourselves and to the world to speak our truth.



What helps you thrive?


I recently moved near the ocean from one of the most toxic cities (NYC) and being so close to a body of water keeps me grounded and connected to spirit.


Eating an organic diet and preparing all of my meals nourishes both my body and soul.


Finding connection with like-minded people feeds me like nothing else.


Feeling the sun on my face and body saturates me with healing energy.


Having a vehicle like Planet Thrive to help me contribute to the world in some way makes me feel productive and gives great meaning to my life.



What helps you get through difficult times?


Creating Planet Thrive has kept me alive and sane through the surreal experiences of the past few years. It has connected me to Spirit. It has given me something to focus on outside of myself—something that will help others and give meaning to my own suffering. It has allowed me to express many parts of myself—the creative artist, the compulsive worker, the methodical organizer, the cerebral innovator.


When faced with an illness as harsh as MCS, it is easy to lose faith in the world, in your God, in yourself. Everything has failed you: your body, the medical system, your friends and family, your environment—the whole world and universe. Planet Thrive has been an opportunity for me to believe in myself in a way I have never before and to take back some control over my health and my world.


There is a quote by Rumi: The spiritual path wrecks the body and afterwards restores it to health. It destroys the house to unearth the treasure, and with that treasure, builds it better than before.


Planet Thrive has been the mortar that I am rebuilding my house with.



10. If you were a superhero, what would be your superhero name?


Well, a while back I actually created some superheros and it’s hard to choose one. My names are Luna, Kaia, Electra, and Centaur.





Thank you, Julie for sharing your story. All the best in your work to help people and the earth to thrive.



Create your own superhero character with the Hero Machine Generator
http://www.ugo.com/channels/comics/heroMachine/classic.asp

Moon McNeill, Germany

Moon McNeill
founded the group Artists with MCS, now Creative Canaries. To read more about the artists, their work and the organization, please visit the Creative Canaries web site. There, you can also find information on safer art materials and MCS awareness posters. Presently, there is a call for artists with MCS for upcoming exhibitions in Chicago and Dallas.

This is Moon's interview from November, 2006.


1. How did you get MCS?



My first symptoms appeared back in 1974 when I had a lot of amalgam fillings done. All in all I had 14 big fillings, some of which fell out every once in a while. I never suspected anything was wrong, but I realized I always had hurting teeth and a metal taste in my mouth. I was also aggressive and depressive, sometimes even suicidal. I started to react to perfume and cosmetics and my health situation got worse with the years. Unknowingly, I came into contact with solvents in the art room of my school and with wood preservants and formaldehyde in my home. It was in 2000 that I broke down after many years of detoriating health and an LTT test revealed that I was allergic to Amalgam. My fillings were removed in 1992, but without any safety precaution like Kofferdam, so I inhaled the lot. What's worse: the dentist recommended gold fillings instead of ceramics and forgot to tell me that there are ways to detoxify amalgam from the body.



2. What is the attitude of German people to using everyday chemicals? Are they aware of the harm?



No, not at all! Most of the people have no idea that household chemicals are dangerous, although they know that kids should not play around with them. The supermarkets sell tons of fabric softeners and you can open any kind of perfume bottle to take a sniff before you buy. Clothes or shoes smell of formaldehyde, but they are bought nevertheless. Cosmetics are in fashion and people in my hometown love to wear lots of perfume. We have institutes that promote a critical attitude and publish research of their product testing series regularly, but the average customer is not aware of danger and not willing to hear about it.



3. Is the medical system in Germany attentive to the needs of people with Chemical Sensitivities?



No, not really. We have some environmental doctors here, mostly situated in the southern parts of Germany. Some are regularly attacked by the authorities, some have given up practicing because of that. In Northern Germany, where I live, there is a small psychiatric clinic with six environmental beds. But when they send you to your family doctor with lots of ideas what could be done, you will mostly be ignored. In the last few years, the developments are even more negative. The so called RKI study cared for more MCS victims being psychiatrized, although the study came to the conclusion that Chemical Sensitivities are a severe and disabling illness. The involved clinics and environmental ambulances could not present convincing results in regard to the existence of reactions to chemicals, the causes and the quality of therapies, so we are in a worse situation than we were before. We are way back in the seventies here, when it comes to environmental medicine. I regard the situation as dramatic and traumatic!



4. What inspired you to begin Creative Canaries, a network for artists with MCS?



I have always been involved in art somehow, I sang in bars and painted when I was 15, I played theatre in school and so on. After I received my diagnosis, I fell into a deep hole. While recovering, I thought that art could help me to digest my new situation. A lost job, no medical help and all that! I found that I could not tolerate any paint. It took two years for me to start painting and that was so depressing that I started to look for more artists in the same situation. In the internet, I met the American musician Kim Palmer (www.kimpalmersongs.com) in 2001 and asked her via mail if she would join a network for artists with MCS if there was one. She said: yes, decidedly. Great idea! So I founded the network and started to look for artists who had Chemical Sensitivities. I wanted to find out about safe art material and non-toxic ways to make art, in spite of having Chemical Sensitivities. I wanted to create a pool of knowledge about safer art material and share experiences. And I wanted to support artists with MCS to earn something, to exhibit etc, in spite of their disability. By and by, others came and I started to feel less isolated.



Kim Palmer died in October 2006, after having a mammography. She became electro-sensitive in addition to being a universal reactor to chemicals, and just fell apart in the following year. Kim Palmer was the person who inspired me most, because she sang about this illness. She impressed me with her strong personality and her dry humor. She was terribly sick, but still worked as an artist and activist and produced her music in a porcellain trailer where she lived. I realized what we can do for the MCS world, how important art is when it comes to initiating cultural change. And how important for us, who need to express all the anger, worries, needs, fears and wishes we experience.



5. What's the purpose of the network Creative Canaries?



There are many purposes, depending on the different perspectives. Some members just want to be in contact with other artists and share their art, some want to work politically. Many want to start exhibiting or rehearsing again or get back to making art after years of being unable to make art. The bigger purpose is to inform the public about this devastating illness and its causes, to make known that lots of art material is toxic and/or sentisizing and can cause all kinds of severe illnesses, like asthma, allergies, heart palpitations, eczema, lung cancer, brain fog and the like, if you do not use gloves or glasses or breathing masks. Many people are not aware that even the small doses of formaldehyde in acrylic paint can cause cancer in the breathing system! Another purpose is to support each other in getting recognition as an artist. It is hard to direct a film, exhibit in a museum, sing in front of a perfumed audience or play in a theatre when you have Chemical Sensitivities, but it is not impossible! We need specific precautions, but they can be realized. We are disabled and have a right to work in our jobs, demand support and facilities that are safe. Laws like the ADA are one thing, reality often is quite another.



6. How many artists belong?



In the moment, we have 50 artists from 3 continents, but I am connected to a lot more people who just don't want to join a network like ours. Many artists are afraid that when the public gets to know they have Chemical Sensitivities, they will be discriminated. I truly understand them but my own choice has been different.



7. How has the response been to the group and the artwork?



Well, that really is a difficult question. We do not have the funds to really kick-start the group, so everything happens very slowly. We are planning to exhibit at the AEHF symposium in Dr. Rea's environmental clinic in Dallas in 2007. We also propose for a show in Chicago. Some of our artists exhibit paintings, publish stories or try to make performances, but we do not have real support anywhere. Let's say: we are still in the experimental phase of becoming what we want to be. But with time and persistence, we will get there. It is a long process.



8. What keeps you going during difficult times?



My friends everywhere in this world keep me moving ahead! I have so many wonderful e-mail contacts to people in Denmark, Rumania, Finland, England, France, America, Canada and Australia. They all have Chemical Sensitivities. Last year I even found two wonderful friends without MCS who can come and visit me. They stay fragrance free. I was very lonely sometimes before they came, in spite of all my internet contacts. When things get nasty, I take a walk somewhere and let nature provide her healings powers. This planet is so unbelievably beautiful and unique. I ask myself how we can be so stupid to think that there is anything like it anywhere else!



9. What advice do you have for others thinking of organizing people with MCS into some sort of group?



Good question! Well, prepare yourself for difficulties and conflicts of all kinds. The life we live is so hard, it strains us beyond belief. We need to struggle against so many obstacles. This makes life so hard sometimes that we are aggressive, non-compromising, unfriendly, lacking patience. We tend to see ourselves as victims, but I prefer to empower myself and live my life, even with all the obstacles I have to face. We ARE Victims of course, but it does not help to concentrate on that. But the mere fact cares for group dynamics that can be very difficult to handle. But there are other times when you feel that a group is a wonderful and dynamic organism and collects a bunch of great people that inspire you a lot! I would not want to miss a single moment, in spite of all difficulties I experience.



10. What have you learned from your experiences with Creative Canaries?



Mostly that we are all sitting in the same boat, but have not yet decided to row in the same direction! I wish all support groups for people with Chemical Sensitivities would unite and use the power that they would have. I wish all artists with Chemical Sensitivities would get up, join this network and start to really get busy. This planet needs us!


Thank you Moon, for all your dedication and for sharing your courage with us today.
-Stormchaser