left: Understanding Multiple Chemical Sensitivity: Causes, Effects, Personal Experiences and Resources,
recently translated into English. right: Author Els Valkenburg, masked due to MCS.
Els Valkenburg is the author of the first book on MCS to be published in The Netherlands, Understanding Multiple Chemical Sensitivity: Causes, Effects, Personal Experiences and Resources, a comprehensive guide for those suffering from environmental illness previously available only in Dutch and German, and now translated into English. To celebrate the publication of the English version, Planet Thrive asked Els to share some of her story with our readers.
Julie Genser: Thank you for sitting down with Planet Thrive for an interview Els, and congratulations on completing the English translation of your book Understanding Multiple Chemical Sensitivity: Causes, Effects, Personal Experiences and Resources (ISBN: 978-0-7864-4443-4, 224 pages). Can you tell us what you were doing before you developed MCS?
Els Valkenburg: Thanks for your welcome and for your congratulations, Julie! I was working part-time as a secretary at a truck distribution centre and during the weekends I gave Reiki seminars for many years in The Netherlands and also a few times in the US. I also wrote a book about Reiki, which is published in the Dutch and German speaking countries.
JG: Oh, I love Reiki, I practice it regularly on myself! Can you tell us how you developed MCS?
EV: I think several factors contributed to my MCS. My grandfather was a painter and was ill as well, so there may be a genetic component of chemical injury passed through my DNA. In addition, lifelong exposure from birth to heavy cigarette smoke from my father (as a child I had many health problems, but the doctors did not have a clue at that time what caused it), heavy diesel, printer and asphalt exposures at my work environment, exposures at our old farm house (to mold and new materials as a result of several renovations) and several surgeries and anesthetics within a few years time all added to my “total body burden.” Finally, fumes from a leaking chemical toilet in a poorly ventilated camper pushed me over the edge into full-blown MCS two weeks after my fourth nose operation.
JG: Wow, that’s a lot of toxic exposures, but then again, I bet all of us living on this planet have a similar list. Can you share what your main triggers and symptoms are?
EV: Low doses of many synthetic chemicals trigger symptoms like brain fog, blackouts, airway infections, impaired concentration, and other symptoms of poisoning. My symptoms are comparable with a terrible hangover without the use of alcohol, and when the exposure is heavy, I also experience nausea, dizziness and trembling. This year’s unexpected exposure from our neighbors to their insecticides made me very ill. I could not eat and could hardly drink for days, and it took me months to regain some improvement. Nowadays I get spontaneous and heavy nosebleeds when exposed to just a whiff of perfume or other chemical.
JG: Yes, perfume is a big trigger for me as well. But it’s hard to avoid all these exposures if we go out into the world at all. What lifestyle changes have you had to make to accommodate this illness?
EV: I live in complete isolation in an “MCS-safe” (non-toxic) house. It took my husband and I some time to get our house safe for me, but we managed. We do not allow guests in our home, unless it is absolutely necessary — for example, we may let a repairman in to fix something. I never leave the house to go somewhere, travel or visit people. When the air is clear enough I am able to go outside and spend time around our house in our garden and green yard.
JG: You paint a very isolated picture, but those with MCS know this picture well. I also live in near isolation and only go out to do my food shopping or walk around my yard. Thankfully, the Internet — with sites like Facebook.com and PlanetThrive.com — allow us all to connect in cyberspace. Can you explain to our readers what the purpose of your book Understanding Multiple Chemical Sensitivity is?
EV: It is my hope that my book will improve the lives of MCS patients; not only their health and living situation, but also their relationships with family and friends. One of my goals with writing this book was to increase understanding and respect for MCS patients worldwide, not just from our family, friends, co-workers, and acquaintances, but also from the specialists providing our health care. Currently, there is very little understanding and this greatly impacts our lives in many areas. This is why the book also has a scientific emphasis and all the information is backed with research and reports. My book also aims to increase global consciousness regarding the use of everyday products, including both foods and consumer goods. Hopefully the message in my book will prevent others from becoming ill as well. If I would have had this information 10 or 15 years ago, I am convinced I would not have become as ill as I am now, because I would have made other healthier choices. Most people do not realize that everybody can develop MCS!
JG: I resonate with this, as it was a driving force behind my creating Planet Thrive — wanting to help others avoid all my mistakes and find the information and resources that would help them shorten their path to recovery. Can you explain how your book differs from other books about chemical sensitivity?
EV: The book has 7 parts, from tips, advice, and patient stories to scientific explanation models. Most of the existing MCS books are either written by physicians from a medical perspective or by MCS patients about their personal experiences. I have written this book from my own experience, but I also include scientific research throughout to help illustrate that this is a very real and serious physiological illness. My book also differs from others because it is suitable for everyone, whether you are an MCS sufferer, family member, or environmental medicine practitioner.
JG: What inspired you to write a book on MCS?
EV: The unwillingness of my family to try to understand my situation motivated me to write a book. Up till that time there were no books about MCS published in The Netherlands. Before starting my book, however, I first built a website, then later decided to share my knowledge in a book format. The harder my family fought me and clung to their disbelieving “It must be all in your head” and “You’d better see a shrink” misperceptions about the illness, the more I found the energy to stand up and refuse to suffer in silence. So, ironically, the readers should be very thankful to them, as I am very thankful for their rejection, although it took me some time to see it this way.
JG: I completely understand you on this, Els. I have found that the sicker I got and the more ignorance I encountered, the harder I worked to get my voice out; my website Planet Thrive was fueled mainly by anger and frustration, in addition to the desire to help educate. Although inspired by challenge and conflict, Planet Thrive is the biggest expression of love I could ever muster. When we can take our difficult life experiences and channel them into productive pursuits, well, that is a very satisfying creative process that I wish on everyone faced with a health or life challenge. Can you break down what topics your book addresses so we can understand better what ground you cover?
EV: Part I: What Is MCS? (General; Treatment and Strategies for Relief; Scientific etc.); Part II: My Story; Part III: The Voices of Others; Part IV: The ABCs of MCS: Tips and Advice in Alphabetical Order; Part V: Films, Books, Art, Music and Spiritual Nourishment; Part VI: Further Resources (Articles; Websites); Part VII: MCS Handout. See my website the-abc-of-mcs.com for more detailed information on the book.
JG: I love how you included spiritual and soul nourishment, I have focused on that a lot with Planet Thrive. It’s a piece often missing from online health sites, books and other MCS resources. My copy of your book is currently off-gassing, but I flipped through it quickly and found my own story in Part III: The Voices of Others — I had completely forgotten I had sent you that a while back! You also have the personal stories of others who are working publicly to help raise awareness, including writer/director/producer Alison Johnson, founder of MCS Beacon of Hope Peggy Troiano, filmmaker Susan Abod, founder of MCS Global Diana Buckland, founder of the Chemical Sensitivity Network (CSN) Silvia K. Müller, and several more. Plus stories of many MCS patients, including a tribute to those who have died from MCS like Cindy Deuhring, Domenic Troiano, and Kim Palmer. What a wonderful resource for those suffering with the illness and an opportunity to find recognition and validation of their experience. Also, the alphabetical glossary style of the advice section seems very helpful and easy to understand. I can’t wait to read it Els — excellent work! How long did it take you to write the book?
EV: Thanks for your compliments, Julie. It took me about 1.5 years to bring the Dutch version to the readers, another year for the German version and after that another year to bring the English version to the US/world market.
JG: Impressive! What has the response been to your book?
EV: The response has been very good. Lots of patients are happy to have the book to help inform their family, friends, and physicians about the illness. Hopefully the book will help prevent them from losing relationships with close family members and friends as I did, and will contribute to gaining awareness for MCS on a global level.
JG: Do all three versions — Dutch, German, and English — contain the same information and resources, or are they tailored to the specific audience?
EV: Each version is modified to the specific language/market, however the stories and scientific sections are direct translations. This is why it took an additional year to produce each of the language versions. If they were 100% direct translations, it would have required less time.
JG: Was it difficult to find a publisher?
EV: Since I had already written a book on Reiki prior to this, I already had a Dutch publisher. I approached him with my plan to write the first book on MCS in The Netherlands and he immediately was very enthusiastic. After that, he sold the German language rights to a German publisher, and then I found the US publisher myself. It actually all went pretty smoothly, I am still surprised about that because normally 97% of manuscripts are not published at all.
JG: That’s really great. I guess that is one benefit about living in a country with so few resources on MCS! Can you talk a bit about your website “The ABC of MCS” — what kind of information does your site provide?
EV: My website contains information about the three versions of my MCS book, and it is also meant to function as a sort of worldwide “yellow pages” for MCS. The site has many quality links to informative websites, articles, products and other invaluable resources. It is regularly updated and has been online since May 2005.
JG: Is MCS recognized in your country, and if so, what services are offered to sufferers? Do you have access to good medical care?
EV: No, unfortunately MCS is not recognized in Holland and there are no services offered especially for MCS patients. We are years behind the US and other countries with respect to this, which is why I decided to write a book on it, to help raise awareness about MCS among doctors, therapists and other practitioners providing us with health care. I personally do not have access to any scent-free medical care facility. If I ever need to go to a hospital, I will have a big problem!!
JG: Well, the situation in the US is not so great either. I do not have medical care because I cannot enter doctors’ offices either. Hopefully as awareness grows to the dangers of fragrance and chemical cleaning products, this will change. It is starting to here — parents of autistic children are beginning to request chemical free spaces from their children’s doctors, therapists, and teachers. You might try contacting autism organizations in Holland that understand autism is an environmental illness, and join forces to educate health practitioners. Can you share with us what your biggest goal is with regards to educating others about MCS?
EV: This is my “creed” on educating about MCS: My goal is to bring about more understanding and acceptance and to spread the knowledge about this environmental illness. I hope young people, supplied with the facts, will not end up like me. Had I received this information 10 years ago, I would not have had to live the life of a recluse.
JG: What have you learned — about yourself, others, and life — by getting chemical sensitivity and writing your book?
EV: I have learned that you are stronger and tougher than you think. I studied the impact of positive thinking and experienced firsthand how one’s mindset is very important when it comes to enjoying all the things that are still possible in life and to be able to “be happy” no matter what the circumstance you find yourself in. It is also important to believe strongly that you can one day reach your goals and fulfill your dreams. Focusing on that vision will give you a lot of power and energy!
JG: So true, Els. I just heard from a Planet Thrive member who is recovered from being bedridden by CFS and MCS, and she shared the same thing: the importance of believing in your future and never losing sight of it. You mentioned your husband earlier — is he also chemically sensitive?
EV: I am married to a wonderful man for 20 years now, and he is not chemically sensitive at all. Although by living in our non-toxic, chemical free environment he is now much more aware of how people stink and how awful some chemicals and perfumes can be.
JG: I hear that happens with a lot of spouses. How has he dealt with your disability?
EV: Fortunately he has been very good; he never doubted my situation. Sadly, many MCS patients often lose their partners. The fact that my partner supports me 100 percent is a great blessing to my path!
JG: Amen to that! Having a solid support system is so important to our ability to cope well with this traumatic condition. You mentioned before that your family has not been accepting of your illness. Do you mind sharing more about that, as this is a challenge many of us face.
EV: My family has not accepted my illness at all. My husband and I encountered lots of misunderstandings and a lack of receptiveness to hearing accurate information. Finally my parents forced me to break with the entire family, because things in the family only got worse when we were trying to gain their respect and understanding by discussing it. The whole story of how I overcame the loss of both my parents, three sisters and their partners and children is published in my book.
JG: That is very tragic Els, I’m so sorry for your loss. I imagine that was extremely traumatic, on top of dealing with the onset of the daily debilitating symptoms of the illness. What helps you stay sane in the face of all these challenges to body, mind and spirit?
EV: Working on projects (like writing books) helps keep me focused and centered. In my eyes, it is very important to continue to find some perspective in your life and to work on a creative project, no matter what. My choice was to write (books, stories and poems), which was my dream from childhood. I could never have known of course, that I would end up becoming a writer in this isolated situation.
JG: Sometimes it is our greatest life challenges that open us up to living our dreams, although many times our dreams may take a different form. Living with MCS is no walk in the park — what stress-relieving practices help get you through difficult times?
JG: We all need a rock! What do you do to manage your illness — do you take any supplements, eat a special diet, etc.?
EV: No, I do not take any supplements (besides now and then some tri-salts when I have been exposed to something) because I cannot handle the filler ingredients and additives. I eat chemical free, organic food, and can tolerate almost any food –- as long it is pure and has no chemicals added. I purify my water and air. I practice Reiki and meditation almost on a daily basis and that gives me lots of energy and power to cope with this situation.
JG: I believe that diet should be one of the first areas of life to focus on when one becomes ill. Many find that symptoms can be improved or eliminated simply by removing wheat, dairy, and sugar from one’s diet and eating organic, whole foods without all the additives you find in store-bought, prepared products. In our fast food culture, this requires many of us to go from eating in restaurants to preparing the majority of our own meals, almost overnight, which can be a huge impediment to eating healthy. It certainly helps if we like to cook and eat. Do you enjoy cooking/preparing your own food and can you share with our readers a delicious traditional Dutch recipe that you love to make?
EV: First of all, I have to say that I hardly have any time to try out new recipes because of my work, but I love to eat fresh, organic vegetables from our garden. Because of my lack of time, I choose to cook simply, but of course all of our meals have great flavor and are as healthy as can be. I can share one of my favorite vegetable recipes from our garden, but I won’t add the amounts, because here we have a totally different system of measurements which makes translating a Dutch recipe into English very difficult!
Delicious Dutch Endive Dish
Take organic endive, wash and cut it and put it in an oven dish. On top of that spread some organic minced meat (already fried) or take vegetarian meat (like tofu, etc.), add any herbs/spices you like, and then add another layer with pre-cooked and mashed (mashed with organic milk) organic potatoes. On top of that, put some slices of organic Dutch cheese. Bake in the oven for a half hour on regular temperature. Enjoy your dinner! We love this recipe here very much.
JG: Thanks for sharing that Els. Can you name the top five things you could not do without, in managing your MCS?
EV: Of course my husband is very important to me and aside from being my best friend, he also provides loads of practical help (shopping for groceries, organizing things outside the home for me, etc.), so I do not want to put him on a list with “things,” as he is in a category by himself! Besides my husband, I think for me the most important things in managing MCS are: 1) clean air (air purifier and respiratory mask); 2) a safe house; 3) a safe outdoor environment (as clean air outside as possible); 4) organic food; and 5) purified water.
JG: I bet all our lists would be pretty similar. Do you have any hobbies/passions that you do that have nothing to do with MCS?
EV: The last few years I have been focused solely on the subject of “MCS” because of my book and website projects. So my other hobbies (like reading and writing stories, poems, etc.) are on the back burner for now. I have painted a bit in the past, but cannot handle paint anymore. Nowadays I love to watch movies, a new interest that developed only after I was forced to live in such isolation. In the daytime, I continue to write and my plan is to publish more books in the future.
JG: What other writing projects have you completed, or are you currently working on/planning?
EV: As mentioned earlier, I wrote a book on Reiki (The ABC’s of Reiki, with 817 questions and answers) before I started my MCS book project. It has been translated -– just as my MCS book — into the German language. The book is doing very well. As usual, I have several ideas for future books, but they are no more than preliminary notes on paper at this point.
JG: Do you have any other projects planned related to MCS?
EV: At this moment, my MCS projects are complete after several years of very hard work. Now it is time to take a break for a while. Although, you never can take a break from MCS — it is a 24/7 “job” to stay healthy!
JG: I certainly agree with that. What advice would you give to someone who just got a diagnosis of MCS and is looking for treatment help and lifestyle advice?
EV: Of course, my first piece of advice is to read my book, because it contains a lot of invaluable information, scientific research, and personal experience on coping with this illness. It is also very important to strictly avoid chemicals and adjust your life to MCS. The more toxic exposures you get, the more sensitive you will become — I know from experience!! It was only until I got really terribly ill that I first heard about MCS; far too late for me. Now, I hope very much that my book will prevent others from becoming as ill as I am. That is my goal.
JG: A very worthy goal! What advice do you have for young writers interested in publishing a book on MCS — what are the first steps they should take?
EV: When I began my MCS book project, I was lucky to have a published book already and so it was easy to draw my publisher’s attention for my second book. For those just starting an MCS-themed book, my advice would be: Make sure you have a plan on how your book will be structured, then based on that structure, do your research and collect information. If you want to look for a publisher before the book is completed (as in my case), make sure you send them a decent excerpt to judge if they are interested or not. Be aware that some publishers will only accept completed manuscripts. Your success will depend on the publisher, your plan and how the book is set up. Remember to keep this in mind: What sets your book apart from existing books on MCS? What would convince a publisher to publish your book? I wish everyone success on any plan concerning MCS!
JG: Thanks so much for talking with us Els. I wish you a very relaxing break and the best of success with your book.
Els Valkenburg photos: © Els Valkenburg, reprinted with permission.
Julie Genser is a survivor of mercury and arsenic poisoning, chemical injury, mold-related illness, and lyme disease. She is the founder of MCSsafehomes.com and PlanetThrive.com, a hip, rockin’ community that aims to empower others healing from environmental illnesses with the information, resources, and support necessary to create change in their world.