Environmental Diseases: To understand or ignore

This is Eva’s contribution about the cinema published in the magazine Delirio that she has translated into English. The script about toxics and Multiple Chemical Sensitivity is entitled “Rear Window” and it’s a tribute to the great filmmaker Alfred Hitchcock. The photos, as usual, are made by David Palma.

Eva recommends this number of the magazine Delirio dedicated to the cinema because you will find amazing photographs and illustrations.

Rear Window

By Eva Caballé

The room is almost empty; nothing but a bed and an old bedside table without any decor or curtain, all in light colors. It seems calm and quiet. The woman sits on the edge of the bed in front of the window, looking at the sunlight, which is orange because of the sunset. She has a quick look out the window and then observes more carefully, stretching her neck as if she is looking for something. She turns and talks to the young woman who has just entered the room with an ironic and concerned smile.

Woman: Don’t you see how everybody is disappearing? It is no coincidence! They started to spray the park, day after day, while children were playing, and parents and grandparents sat in the sun chatting while watching them.

The young woman puts her hand to her waist with a tired look and responds, gesturing with her other hand, while she snorts, implying that she is tired of talking always about the same thing.

Young woman: You only see conspiracies; for you all is very simple. How can you be so sure if you hardly leave home? When you live through your window! Instead of spending hours writing pamphlets that I’m sure nobody reads, and taking pictures, shouldn’t you focus on your next book?

The woman’s expression becomes serious and she turns angry replying with some indignation.

Woman: But it’s obvious! It doesn’t take Sherlock Holmes! The dog of the first floor neighbors died a few days after the first fumigation. They say that he was intoxicated by something that he ate… A few days ago an ambulance took the old woman who lives upstairs in the middle of the night and she is still hospitalized, when in the 40 years I have lived here I had never seen her having a cold! And what about the children on the fourth floor? (She takes a break to breathe because she speaks so fast that she is even short of breath.) Every day I see them with their bronchodilators and every other minute in the ER! Their neighbor has cancer and since she’s having chemotherapy she can no longer tolerate perfumes and now she has to wear a mask when she walks along the street. (Now almost shouting.) They say that she has Multiple Chemical Sensitivity (MCS) and doctors don’t pay attention to her!

The woman makes faces parodying the young woman’s lecture that she already expects and knows by heart.

Young woman: You are a bit alarmist! There are only a few people who suffer from MCS; there is no need to worry. Today almost everyone has allergies or asthma. Authorities warn us that one out of every four people will have cancer in their lifetime. (Goes back and speaks from the doorway leaning on the door frame.) This is the modern life. We all have to die of something!

The woman turns and answers indignant from the bed.

Woman: And does it seem normal to you? Really? And when this affects you, will you still think the same?

The young woman finally leaves the room and her voice is heard from the hallway with a tone between weary and sarcastic.

Young woman: Well, see you next week. Do not keep on spying on your neighbors because you will end up crazy. You should amuse yourself and don’t fantasize anymore.

The woman answers raising her voice while the young woman closes the front door and leaves the house.

Woman: Don’t worry, my attitude has no solution. (And finishes angrily talking to herself.) And neither does your stupidity.

The woman is still staring out the window with indignation and with a worried face and thinks aloud.

Woman: Does anyone realize? I see everything so clearly that it scares me. Makes me want to open the window and shout it from the rooftops, but will anyone hear me? Why don’t they listen even when you alert them? (With a sarcastic tone.) Having no time and the fast pace of life sounds like cheap excuse to me. (She stands up and gets closer to the window.) It’s simple. We’ve become worse than donkeys, because it is not needed to put blinders on us to not look beyond the established road. We no longer have the instinct to do it! We are afraid of what we might see, lest we have to react. (The sun has set and she begins to close the blind.) It must be that I have no fear of looking or I have nothing to lose. It must be that my window is different…

Author: Eva Caballé, No Fun Blog, February 2011

Original article: LA VENTANA INDISCRETA, artículo sobre tóxicos y Sensibilidad Química Múltiple publicado en la revista DELIRIO

German Version at CSN Blog: Umweltkrankheiten: Hinschauen oder wegsehen?

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New trailer for upcoming film about Multiple Chemical Sensitivity is shown at MCS conference in Spain

Two weeks ago I introduced you the first trailer for the upcoming short film Los pájaros de la mina (The Birds in a mine), the first film made in Spain about Multiple Chemical Sensitivity, which was very well received between MCS sufferers from all around the world.

Today I want to share with you the new and powerful trailer for the film. This new trailer had its debut last week at the MCS conference organized by ASQUIFYDE, which was held at the University of Alicante, Spain. During the three days of the conference, a lot of doctors, lawyers and other specialists talked about MCS, toxics, the situation in Spain, etc. It was really great and we could follow the presentations and discussions on the Internet.

Also presented at the conference was an Environmental Control Guide (my blog No Fun is part of it) together with my video “MCS: The importance of reducing the toxic load”, which, according to Francisca Gutierrez, president of ASQUIFYDE, made a big impression on the conference attendees (medical students, press and other people related with environmental health).

For the closure of the conference, the new trailer was shown. The scriptwriter and lead actress in the film, Mariam Felipe, was there to explain the project and about how the idea for the film was sparked because of my interview on Carne Cruda (Raw Meat) one year ago. And then they showed this amazing new trailer.

The premiere of the film will be December 10th at the Teatro Principal de Pontevedra.

According to the filmmaker, Víctor Moreno, they will make a version with English subtitles, and, thanks to Silvia K. Müller, president of CSN, another version with German subtitles will be made, too.

I’m sure that this film will win a lot of awards!!

Author: Eva Caballé, No Fun Blog, November 10, 2010

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A book about chemical sensitivity will become a radio series in the near future

When the book, “Missing. A Life Destroyed by Chemical Sensitivity” came into bookstores, the sales were surprisingly high. The author of this book, Eva Caballé is chemically sensitive and can exist only within the walls of her safe apartment. Several air filtering machines run day and night. She can tolerate only a few foods, and her water must be specially filtered. Visitors are not allowed into her apartment because the fragrance and detergent residues could cause her to experience a severe reaction. Despite the severity of her disease, this Spanish woman insists on enlightening the public about this condition. Her blog, NO FUN, became her mouthpiece and is read daily by thousands.

Through interviews which Eva’s husband David gave on TV, radio, and to newspapers, Eva’s story was known before her published book was on the shelves. Now her book will be made for a radio series.

Last month, David gave interviews for a radio program called “Vital Space” which discusses chronic illnesses. The program producers were enthusiastic about Eva’s book and want to make the public more aware of chemical sensitivity. Details regarding MCS are not yet well know in Spain.

The response was enormous, which led to the idea of the MCS book as a radio series.

Eva and her husband David agreed, and wrote an editorial for this series. Two professional actors, whose voices are very similar to Eva and David have been hired. A moderator has also been hired to coordinate the recordings. The whole book has been set to music and accompanied by background music. Next fall the series will begin. For each chapter there will be ten minutes of airtime available. Over a period of 21 weeks radio listeners will experience the naked truth about Multiple Chemical Sensitivity.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, July 26, 2010.

Translation: Many thanks to Christi Howarth!

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Articles written by Eva Caballé:

How to become an MCS activist in less than 365 days? Have look to Spain

People from all over the world with chemical sensitivity have understood that their illness is a matter of policy, suppressed by certain lobbyist groups and industries so as to not lose their influence and revenues. For decades, these groups have succeeded in explaining chemically caused diseases as not existing and denouncing the afflicted as mental wackos through specific propaganda. Thanks to the internet, these structures are starting to crumble. The MCS-diseased network internationally, exchange expertise and encourage each other. The possibilities offered by social networks are multiplying this. Years ago barely none of the afflicted knew someone from another country, yet today this networking has turned the world into a “village”.

Never would I have gotten in touch with Eva, a young Spanish Lady who suffers from severe chemical sensitivity, extreme nutrition intolerances and CFS. Even if I had traveled to Barcelona where she lives, I would have never been able to meet her. For the past two years she only can stay in her home, and for several months she just lies in bed all day. In defiance of her severe illness, this remarkable activist manages to make the people of her country aware that our hyper consumption of chemicals in everyday products takes its toll. Together with Susie Collins from the U.S. Canary Report, I asked Eva to report on the last few months. This wish was important to both of us, because from Eva’s report other MCS-afflicted should take heart to become active.

Nobody expects that every sufferer of chemical sensitivity will achieve as much as that which can be read in the following report. It’s even not necessary, because there are many individuals throughout the world who have the same target – the acceptance of a disease which is not allowed to be, but which can’t be kept a secret any longer.

On the other hand, “never say never”, because you possibly may be somebody who still has good ideas and guts, even if you are only able to stay in bed and lack vigor. There sleeps more potential capacity in us as we reckon by ourselves. The intention of the following report is to inspire you:

Eva Caballé:

My friends Silvia Müller and Susie Collins asked me to write about all the Multiple Chemical Sensitivity awareness events I have done since June 2009. This is a summary of all my articles, collaborations and media appearances, which I hope have helped raise MCS awareness.

As many of you know, last June, I wrote an article called “The Naked Truth about MCS” for the on-line cultural magazine Delirio, with two photos of me naked wearing nothing but a mask. The article was translated into nine different languages, thanks to Susie Collins at The Canary Report and Silvia Müller at CSN – Chemical Sensitivity Network. Since then I have contributed to each edition of Delirio with articles focused on MCS: “Screaming from the Silence” and “Metamorphosis inside MCS”, and I am now working on the next one.

Then I decided to write a book to let people know, through my personal life and experience, what it’s like living with MCS: the total abandonment that we suffer and why people should be worried about all the toxic products they use daily. I finished writing Missing: A life broken by Multiple Chemical Sensitivity at the end of August, and in November the book was published by El Viejo Topo. The book was announced when Salvador López Arnal interviewed me to talk about MCS, an interview that was then translated into English, Japanese and German, thanks to my online friends.

Thanks to “The Naked Truth about MCS,” I met a lot of interesting people from all around the world, and one of them in Japan, Takeshi Yasuma, from Citizens Against Chemicals Pollution (CACP), asked me to write a message to MCS patients and their supporters to be presented at the symposium in Celebration of the Recognition of MCS in Japan in October 2009. My message was read and displayed during the symposium.

In November, two weeks before my book was released, I was interviewed by phone at Radio 3 (National Radio in Spain), in a live culture program at prime time called Carne Cruda. For 25 minutes we talked about Multiple Chemical Sensitivity and my book, and they were so shocked that they promised me they would contact the Ministry of Health to explain to them the terrible situation of MCS sufferers. As many of you know, the Secretary General of the Ministry of Health was interviewed on air (my husband David talked to him on my behalf) and made a public commitment to meet MCS associations in Spain to listen to our claims. The meeting was held on February 4, 2010, the outcome of which was a commitment by the government to form a Scientific Committee to create a document of consensus on MCS.

At the end of November, an article about my blog No Fun was published in the youth supplement of the printed newspaper Deia. The article, entitled “Toxic Life,” was an extensive and accurate analysis of my blog (the information I provide, the translations I make, the articles I write, my collaborations, etc.), with focus on MCS and my collaborative work in the international fight for MCS awareness.

I also participated in the fabulous Canary Report 2010 wall calendar, with 14 other women from all around the world. The idea was inspired by my nude photos published at Delirio and I was very proud to be part of such an amazing project led by Susie Collins. The calendars are available for purchase and all profits are donated to the Environmental Working Group.

At the end of 2009, Salvador López Arnal interviewed me again, this time we talked more about my book and my experiences, and he also interviewed my husband David, who wrote the epilogue of my book. This interview was published in the printed magazine El Viejo Topo in January, and in February was released online.

During December 2009 and January 2010, three fabulous reviews of my book were published. The first one was published at Punts de Vista, a blog by Àngels Martínez i Castells, who is an economist and the president of Dempeus, a Catalan association in defence of public health. The second one was published at Kabila, a blog by Rafael G. Almazán, who is a journalist specializing in political and human rights. And the last one was published at the website of the environmental journalist and writer Miguel Jara.

At the end of January, another interview of me was published in the Health supplement of ABC, one of the most important printed newspapers in Spain. The interview, which was a double page and included a photograph of the cover of my book, was focused on MCS and my experiences explained in my book, but also focused on the total abandonment that people with MCS suffer. They included an MCS article written by Dr. Arnold, an immunologist specializing in MCS, which was also published at the website of the newspaper.

“El color de la tarde,” a magazine radio program on Radio Intercontinental, asked to interview me the day after the interview at ABC was published. I wasn’t able to do it because of my health condition, but they agreed to interview David on my behalf. The interview was focused on MCS and my book.

Also at the end of January, an article was published at El Observador magazine entitled “The canary of the mine.” This article, inspired by my book, was about MCS, toxics, my book, and Silent Spring by Rachel Carson. The article was written by an ecologist and it was very combative, encouraging lectors to become aware of the alarm from people with MCS. The article was finished with one paragraph of my book and the last sentence was: “Maybe so many toxic products have managed to turn us into sheep?”

In February, my book was mentioned in a literary radio program at Radio Euskadi and because of this, “La noche despierta,” another program of the same radio, asked to interview me by phone to talk about my book and MCS. My health didn’t allow me to make this interview but they agreed to interview David, my husband, because they were very shocked about my book. The interview with David at Radio Euskadi lasted 30 minutes and it was very deep and sensitive. They talked about MCS, how our government doesn’t do anything to help us and how are we doomed to live without support from social services. The journalist had an exquisite tact and the interview was moving. I answered one question that I previously recorded from bed.

In March, my book was added to the catalogue of two public libraries: Public Library of Navarra and Public library of University of Alicante. I am very excited about this because in both public libraries it’s the first book about MCS that they have.

Also in March, an interview with David was published at “La Contra,” a prestigious section of a very important printed newspaper in Spain: La Vanguardia. They wanted to interview me, but because of my health condition I couldn’t do it. The interview was about MCS and our experience and it was a great success. Because of it, another radio program has asked to interview David.

The same day of the interview at Radio 3, a Spanish filmmaker contacted me because he was shocked with the interview and he decided to make a short film to help to raise MCS awareness. He asked me to help him, because, even though the history would be fiction, he was very interested to make it as real and accurate as they can. The short film about MCS, entitled Los Pájaros de la Mina (The Birds of the Mine), has started to film in March and it’s raising much expectation, talk and press because it will be the first MCS short film in Spanish.

A national TV program called Terra Verda (Green Earth) asked me to participate in their program dedicated to toxics at home. Because of my health condition, they couldn’t come to my house but they agreed to have David record my interview with our video cam. They also asked us to show the changes we have done at home because of my MCS, and we did a second video showing all this information. This program will be aired at the end of March, and then I will post the program at my blog No Fun, along with the full-length version of both videos we recorded at home.

All this has happened in less than a year! I’m very excited about it because I could never imagine I would be able to do all this, especially when my health condition worsened. Of course I couldn’t ever do any of this without the help and support of David and all my family and friends from all around the world.

Author: Eva Caballé, No Fun, March 2010

Title Photo: Canary Report Calender 2010 – thanks to Susie for the permission

METAMORPHOSIS INSIDE MULTIPLE CHEMICAL SENSITIVITY

During our lives we suffer several metamorphoses, some are painful, others are positive, chosen or not. The experience, the life itself, makes us change and evolve.

My story is not different, although my most radical metamorphosis was when I fell ill with Multiple Chemical Sensitivity. But although I got sick suddenly, the process itself happened slowly. I was preparing for MCS for many years before I was aware of it. My body was warning me repeatedly without my understanding what it wanted to tell me. But how could I know that everything happening to me was the prelude to MCS? It’s almost impossible to know since information about MCS is kept secret from the public and when anyone dares to raise a voice, they are automatically silenced by those who say MCS is all in the minds of the patients.

It’s not easy to understand what happens to you as you search for a diagnosis, all the while trying not to fail during the long journey while you are riddled with attempts to damage your self-esteem as you struggle with a more diminished health status every day. The last stage of this particular metamorphosis happens when you finally know what it is happening: you have MCS. And then you start to reconsider the life you have known before in order to adapt yourself and to survive into the future.

All of us have gone through the stage of crying over things that we have lost, to hate what we have become. Where is that tireless and impulsive person who took the world by storm? It’s a natural, healthy and necessary stage. But oddly, then comes the most difficult thing: to find our place in this new world in which we’re doomed to live.

And surprisingly, when I thought that my life couldn’t be more foreseeable and monotonous, from the prison that my house has become, another metamorphosis started, this time deeper and visceral. This time my metamorphosis was chosen.

The need to communicate, to let the world know that I’m still alive, to cry out for my own rights and the rights of millions of people who suffer MCS in the whole world, led me to write. My timid voice started to be heard on my blog, No Fun, and then gathered strength thanks to Delirio’s articles, which were translated into several languages. And the first of them, “The Naked Truth about MCS,” was read on the Spanish Radio 3 program Carne Cruda. It was then that I finally dared to do something I had never imagined I would ever do: to write a book.

The extremely reserved person that I used to be has disappeared, in order to be able to tell my story to the world, as I dig into the deepest places of my being. Missing: A Life Broken by Multiple Chemical Sensitivity is a fulfilled wish as I report the situation in which we live. It’s my metamorphosis inside the metamorphosis of living with MCS. It’s my testimony, my life, my reflections. It’s also my contribution to the fight we’re doing at an international level to have MCS fully recognized. My book is the clearest proof that MCS didn’t take away my essence or my attitude; MCS didn’t steal my dreams but rather it changed my dreams so that I could help others.

My wish is that a lot of books will be written by people who are “missing” because of MCS so that the public knows we exist. We are ill, but no one will silence us.

Author: Eva Caballé / No Fun Blog, published at Delirio 2010.

Translation: Oscar Varona (from Delirio’s team) and Eva Caballé with help from Susie Collins.

Japanese and German versions are following soon.

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