A Gypsy Life: Notes from the Diaspora
Something very special happens when all the former definitions of your self, your security, your entitlements change. If you live to tell the story that special something is REBIRTH. Our journey is that, a piecing or peacing together of many 1) thoughts and beliefs, 2) emotions and feelings and 3) intuitive knowing. – Mokihana
JG: Hello Mokihana and Pete. Thank you for agreeing to chat with us about your current project, The Mobile Bird, your journey with chemical sensitivity (MCS), and your vision. You recently completed your “Vardo for Two” mobile tiny home. Let’s talk about the name first: Vardo, which is the name given to traditional horse-drawn English Romani (Gypsy) wagons. Even today, about 1% of Romani travellers are estimated to still live in the traditional horse drawn vardo. The Romani are a nomadic people who have experienced a lot of racism and discrimination. From your blog posts, it seems you identify with the Romani as a nomadic people, but also as a people who are not treated well by mainstream society. Can you talk a bit about these connections you feel?
Mokihana: Intuition drew me to the shape of the vardo very early on before MCS required us to build something safe. The shape connects me to the roundness of the Earth. Identifying with the Romani happens for at least a couple reasons: first the knowledge I have of their ongoing persecution touches me as a Hawaiian woman. The experience of the Island people has and continues to be one of displacement in their own land. Thousands of Hawaiians live a life of Diaspora, un-safe and illegal on beaches that are their places of birthright – just one of the examples of this contemporary experience. My blog Sam and Sally was my healing narrative trying to make sense of our experience living in the car as refugees and illegals.
Secondly, the Romani wander as nomadic people because it is part of their soul’s imprint … I believe that imprint rests within me as well. The daily experiences of living with MCS bonds me to the enduring nature of Romani; we endure despite all the factors that would defeat us.
left: traditional Romani Vardo © Creative Commons;
right: Pete and Mokihana’s Vardo © Mokihana Calizar
JG: The idea of the Gypsy wagon resonates strongly with me, as well. When traveling in the Middle East toward the end of ’98 – at the beginning of my long downhill slide in health – I met and fell head over heels with a dashing, charismatic Bedouin (nomadic Arab) living in the desert. I spent the next five weeks learning to bake bread under the smoldering fire coals, play the Arabic hand drum, and say I love you in Arabic. Ultimately I left my love, and the desert. The conditions were quite harsh and the cultural challenges were huge. But the lessons I learned from this nomadic culture will stay with me for life. One of these: everything I need is inside me. It was a beautiful experience that helped prepare me to deal with what was yet to come.
I have often compared my experience there to that of having MCS, and how my life seems destined for the desert and its harsh conditions. Having such a nomadic soul myself, being “grounded” by MCS was especially painful in an emotional way. What I love about your vardo metaphor is it gives people like you and me that emotional outlet to feel connected to a nomadic life, to the Earth, to feel our feet planted on the ground while our soul travels the planet. It allows us to rise up and transcend the prison – or cage as you say – of MCS and create something more powerful for ourselves. Beautiful. This is why reading your blog made me cry! It speaks to that part of me, on a very deep, deep level. This is the power you have – anyone has – by following their truth and putting it out there. You don’t know how many others you will affect, and in what ways.
Can you tell us a brief history of your journeys with MCS – how you got sick and how it’s been for you both?
Mokihana: I’ve been trying to get to the point of a ‘brief history with MCS’ for fifteen years. So this will be an interesting answer. I had childhood asthma, triggered at least in part, as are so many children in the islands by the rampant use of chemicals by the military, the agricultural industry and the population at large. None of this was ‘common knowledge’ when I was growing up. I ‘outgrew’ asthma in my teens, never had asthma during my twenty three year of living in the Pacific Northwest. I worked for fifteen years in the retail and hospitality businesses. I didn’t put the connection between the migraine head aches and anxiety attacks that started more than twenty years ago, with environmental and workplace illness/exposures to chemicals, fragrances, cleaning products and retail store construction…until now. The journey has been intense, humbling, exhausting and isolating. Grief and loss are a huge factor in this illness because as you’ve written on Planet Thrive, many people especially those friends and family closest to you simply don’t or can’t get it. So the learning curve is steep and then there’s another and another. The process distills me to my essence, and I understand at a deeper level there is a purpose to the madness.
Pete: I am chemically sensitive from a lifetime of working construction and being exposed to too much too often. I have stepped into many brain fog clouds not knowing what is coming or going.
JG: I think anyone with severe chemical sensitivity has had to process a lot of grief and loss – we all have such interesting but sad stories to tell. Mokihana, you are originally from Hawaii – how is life with MCS there? It seems like a nature lover’s paradise but I have heard horror stories from one MCS woman who lives there.
Mokihana: Pesticide use in the islands is out of control. I read somewhere that the islands have become a mecca for genetically engineered plantings. Monsanto is the biggest employer on the island of Molokai. It makes me so sad to even write this. Chemical manufacturing and distribution is a big deal in the island, it makes money for the manufacturer and keeps people employed. I’ve touched on the issue of chemical spraying in the previous answer. Back in the early 1950’s spraying DDT to control mosquitoes was common practice. Normal city and county road maintenance practices today include routine spraying of Round-up to keep the rapidly growing flora and fauna under control. We fled a beautiful rental cottage on the North Shore of Oahu two years ago because we woke to see a county tank truck spraying Round-up to the road outside our windows. Neighbors and golf course use pesticides and herbicides just as the city and counties do. The reality of life with MCS in Hawaii is difficult at best. We are FROM there because we can’t BE there. This loss is perhaps my deepest grief. I love the islands that were paradise, especially the warm salt water and mourn the fact that I cannot be there.
JG: That must be so hard; to grow up in such a place of beauty and watch it get bludgeoned by ignorance and greed. Through my own experience of having MCS, I do feel a similar type of grief about the entire planet, and how humanity is destroying every last inch of it with its unrestrained use of chemicals and digital technology. Our idea of “home” becomes drastically altered.
Let’s talk a bit about the physicality of your vardo. It’s 7 feet wide x 12 feet long and weighs around 3,800 lbs.total (including the 950-lb trailer). Did you have to estimate the weight of all the materials before building it to make sure it was transportable?
Pete: Yes, we did have to do a rough estimate of the weight of the materials for the Vardo because the trailer is rated for 5,000 lbs. We made sure there was plenty of weight to spare for the first trip to determine how it would handle on the highway at 50+ miles per hour. The Vardo trailered very well on the highway and hills.
Interior view © Mokihana Calizar
Pete: The luxury of living as chemical free as possible is a wonderful way to learn to appreciate the goodness of clean air, organic food and simple living. I have enjoyed being and working outside and continue to do so. I always change clothes and often take a shower before entering the Vardo for time with Mokihana, meals and sleep.
Pete: We purchased all our milk paint from Homestead House in Toronto, Canada.
Mokihana: Nothing in our vardo is new. The off-gassing in essence was done years ago. The air filter and ceramic heater were purchased new, wiped down with vinegar and water and then used for more than six months prior to use in the vardo. The bed frame is poplar, but I react to poplar. So that is wrapped in Denny Foil and after 2-3 days of airing we were sleeping on it. The flannel sheets we use for wall coverings were purchased at a thrift store in late fall of last year, washed several times in milk and baking soda over the winter and then left out in the snow to finally let nature have its way with the toxic smells.
Some of the bedding we purchased in late summer of 2007 had to be kept out until we could re-wash and air in the fresh air where we live now. Our very old and worn flannel sheets remain our safe bedding today. It can take a very long (6 months) to get even organic cottons to the point where I tolerate them.
JG: That’s funny – six months to get organic cotton sheets tolerable seems like a very short time to me! (Some of my things can take years to outgas.) From your blog, I see you have built an outhouse and have an outdoor kitchen encampment. Prior to that, was there any allowance for a bathroom/shower or kitchen set-up in the interior?
Mokihana: We run an extension cord from the house across the driveway that provides us electricity. We have enough electricity for a ceramic radiant heater, an air filter and a light with a 40 watt bulb, and our 10 year old lap top computer. I knew the electricity would need to be kept to a minimum. In such a small space, any electrical use could trigger a body over-load.
The four outlets inside are positioned as far away from the bed as possible with that in mind. The four windows and the window-topped Dutch front door were designed to allow maximum natural light and are doing that very nicely in the often gray and sun scant Pacific Northwest.
Mokihana applying milk paint to the exterior. © Mokihana Calizar
Mokihana: We used milk paint with a beeswax finish to seal as gently as possible on the outside and prevent mold. Rather than use any additives to the paint we do spot checks, and will need to continually spot check for mold, clear and clean with vinegar early on and use a citrus based non-petroleum/caustic agent cleaner to kill mold spread.
The unique flooring and sealing method (using no plywood) that Pete used to make the Vardo both road-ready and sealed from moisture and road travel are another part of the precautions we took.
Mokihana: This answer does not include the planning time of about a year prior to the actual building time. From the time the trailer arrived until the Vardo was hitched up for travel it was ten months. Once the Vardo was road-ready, we cleaned and cleared it with vinegar and water, I did an energy clearing, set crystals for blessings and let the Vardo clear for three days. We slept in the Vardo the first night we arrived on the Ledge with complete tolerance and incredibly deep sleep.
During the building process, we lived in the Kitchenette … one room of a standard two bedroom basement apartment in Seattle. There was a bathroom and laundry room that was perfectly useable. We had hot showers, indoor plumbing and a washer and dryer with no residual stink from the previous renter’s detergents or fabric softeners. We could not use the living room or bedrooms and instead made the kitchen and adjoining seating area our home. We called it the Kitchenette. Our cooking was done outside from July of 2007 until April of 2008. The Vardo was built on the lawn just a few yards from the space we used as home during building.
Mokihana: The choosing started with months of research first, reading everything I could find on the internet and then talking with MCS friends in Seattle. At a MCS picnic last summer a friend suggested using the glass jar method: placing the material in a jar and after a week or longer in the sun or shade, open carefully to measure the degree of off gassing. It’s a gambling exercise that requires extreme caution and/or a trusting third party to do the deed. Foam insulation failed where as wool insulation passed.
Like Pete said, the testing process is a trial and error experience because for me, and I believe for others with chemical sensitivities, the degree of tolerance or acceptability to a material will be different when the body and mind are in a weakened condition. That’s where the extended period of time for choosing places a big part. Sometimes you simply must wait, recoup and then retest for the next or same material. We worked very closely with an NAET practitioner through every choice. I took samples of nearly every material we considered into her office for muscle-testing and reactivity. I learned to trust her objectivity and her skill with sorting the materials, and then learned to trust my body’s wisdom through that process. I continue to learn how to do this.
JG: You touch on a very important point, one that I don’t hear too often. Our reactivity level changes daily, or even throughout the day, based on our nutrition, our exposures that day, and other factors. It’s important to keep this in mind when testing materials. Pete, what was the most difficult thing about building the vardo – and your most favorite thing about it? What was the biggest mistake, and how did you fix it? Did you work alone most of the time or did you have help?
Pete: Some areas were difficult and some enjoyable. Shopping for and choosing the right material was time consuming and stressful. My first roof choice, a soldered copper roof design proved to be faulty choice. That set us back in timing by weeks. Eventually we were led to a more costly but very practical tight seam metal roof that works well.
My favorite part was knowing in my heart that the Vardo would be a place that Mokihana and I can depend on to be a safe place to live and sleep. That made my day everyday.
With Mokihana always there giving me encouragement, help in making decisions and doing lots of the painting and art work, ordering material for the interior; the bed and bedding, wall covering, shopping for and preparing lunches and dinners, creating the VardoForTwo blog, I had lots of help.
Mokihana: Pete worked alone at all times of the day and night and on snow days the neighbor next door would look out to see him hard at it. The only times people helped him on site was when the roofers lay and set the roof; and when the neighbors and our friend helped Pete move the Vardo out to the street for hitch-up time. He searched and found quality craftspeople who would treat our requirements for a chemical free process with respect and follow-through. These craftspeople and fabricators built a modified trailer to meet our needs, four custom oak windows, a Dutch front door, and metal roof, cut sheet metal and completed steel fabrication for walls.
Pete working on the vardo outside. © Mokihana Calizar
JG: It sounds like all the pieces fit together perfectly, from the great way your skills complimented each other, to the temporary housing you found, and the craftsmen who helped. I think you might have someone looking out for you from above. What are your top five tips to prospective builders of a tiny MCS-safe home?
Mokihana: 1) It is possible and it works; 2) Go slow; 3) Spend time and reflection on the 10 things to ask before building a birdcage; 4) Make lots of room for new lessons; 5) Make friends with time. Here’s a motivator: the cost for our trailer/home on wheels license = $20.00. What a deal for property ‘tax’!
Mokihana: The answer is in the reply we gave about research, choosing material, testing materials and retesting materials and finding suppliers and craftspeople to help with building. The other part of that answer comes from building a small space that must also be able to withstand road travel. Pete’s methods and procedures always ensured a bolting and securing style that would lock a bolt in place under pressure or movement. Jim Toplin master building and craftsman of vardo and caravan reinforced that style of building for beauty and endurance. Pete took that approach and applied it to MCS.
Mokihana: Pete spends most of the hours between wake-up and go to bed outside. I spend a lot of time inside. Depending upon what the outside environment is like for me (pollens, near-by construction) I spend time two hours at a time outside, less if my health is weakened or in a recuperative stage. Having the Vardo to rest I can go in and out on the best of days until early evening.
A gypsy life: view of the vardo, outdoor kitchen, and seating area. © Mokihana Calizar
Mokihana: We know we must seek a different encampment for the winter. Our friends who share their land with us burn wood to stay warmer in the winter, and we cannot tolerate wood smoke for extended periods like all winter. Snuggled in bed hibernating will be part of the scene.
Our hope is to find something similar to the Kitchenette (see our blog for the stories of the Kitchenette) we had while building the vardo. This winter we’ll have the vardo as our bedroom and need a place to park it, an electrical outlet to plug into and a safe kitchen and bathroom with laundry would be ideal. We pray for this or something better. Any readers with a winter VardoForTwo encampment, please give us a shout!
The finished vardo: a work of art. © Mokihana Calizar
Mokihana: We have long-time friends who live on eight acres of woods in Washington State. A year ago we began exploring what it would take to move our MCS selves and the vardo onto their land and share their lives. Not many others offered to share their homes plus change their lifestyle to become chemical and fragrance free. We work at the process every day and every night. It’s one of the learning curves we navigate and so far the love and respect remains foundational, and the willingness to learn about the illness and accommodate our needs remains.
Mokihana: Living with our two friends who share the Ledge on their eight acres is a starting point for this vision to create intentional community. The shared in-house space arrangements – we use one bathroom for showers and use the freezer; learning to ask for and establish needs and limits; and gathering regularly for a shared meal teach all of us what it means to re-assemble the “American Dream” during a time when all four of us ought to be sliding into ‘retirement.’ Our combined skills, talents, histories and personalities in our four-person, two familiar (a feline and a canine) community teach us the art of what it takes to care and share intentionally.
With this experience we hope our abilities to share and live intentionally will grow to include other encampments with other folks with similar goals and resources… much like the Romani have done throughout their history, in different places. I think our original vision for intentional community was more idealistic. With each day and night of life from the Vardo that vision tempers. I see how slowly change comes and try to keep it simple. An intentional community might include the following basics:
- clean air
- clean water
- safe sleeping spaces
- quiet times often
- organic local food/growers and garden space to tend and harvest
- respectful human relationships
- openness to sharing resources
- laughter whenever possible, if not more
- fragrance- and chemical-free
- a spiritual connection with Earth and Ke Akua (Source, Higher Power) that is the foundation
JG: Count me in! I lived at an intentional community for two months in 2004, just before sliding into severe MCS. It was one of the most beautiful experiences of my life, and the possibilities it opened up kept me sane during some of my darkest moments.
I see you are growing wheatgrass and sprouts. I juice them myself 4-5 days a week. It’s also very inspiring to see your organic compost garden beds. People who garden in the high desert climate I live in must protect their beds with wire mesh from the rabbits, chipmunks, and other local critters who would devour any plant life quickly. What creatures do you share the land with, and how do you protect your food?
JG: I will be anxious to hear! I have always aspired to being self-sufficient but not very good at creating it in my life (I am a former NYC-girl after all). Getting MCS was a blessing in that regard because it’s forcing me to live truer to my essence. Finding others who have allowed MCS to guide them back to the land and find their rhythm with the earth is deeply inspiring and gratifying. Thank you for putting your truth out there.
You built your vardo almost entirely from savings but many with MCS are not so lucky and most of their life savings have been drained by the time they decide to build a safe home. Do you have any suggestions for people without savings – are there any creative ways to finance that you can recommend?
Mokihana: We built the vardo with savings. The cost to continue to live and learn this lifestyle, finish the inside of VardoForTwo and get ready for winter puts us right in there with “most of their life savings have been drained.” About suggestions for people without savings … I am very interested in creating communities of ‘Saving Circles.’
Mokihana: I am always on the look out for localized successes with small process. That is what a Saving Circle is. Rather than go into much detail here, I’ve attached a link to the first post on Saving Circles on VardoForTwo.
You have hit the nail on the head when you noted that most people living with MCS have depleted their life savings (if they have savings) by the time they decide to build safe. Daily tasks like washing clothes and getting food or buying safe clothes/bedding are a huge energy requirement and yet these are the basic things a person living with MCS must have to maintain a life. Add to this the health supportive or maintenance costs and its no wonder ‘life savings’ are gone when building a home is the goal.
What I hope to materialize for the MCS community is a forum of some sort (online?) where people within a localized area read about the principles for starting a Saving Circle, find a way to gather in a group regularly that suits their health needs, and begin to practice the principles of a Saving Circle. Initially the circle would save money to purchase the very basic and necessary goods/products that might serve an MCS community.
Examples of these basic things: make sure each member has an inventory of baking soda in bulk, vinegar in bulk, cotton and organic bedding that is washed and sleep ready, clothing that is fragrance fresh in different ‘variations.’ The list can go from there. The goal would be to practice the principles of Saving Circles by saving regular amounts in a collective and supportive environment. The growth and changes will then come organically from the process. With practice and resources a member of a Saving Circle might be able to purchase larger, necessary items (e.g., a washer, a dryer, an electric ceramic heater, an air purifier). In time the process and success of Saving Circles could lead to collectives that have buying and building resources to ‘raise a barn’ a la MCS or build a mobile bird cage.
JG: Ooh, I like the sound of that! You are also now interested in building vardos – or “mobile birdcages” as you have affectionately named them – for others. I’m not clear from what you’ve written so far whether you would actually do the building and then ship it to the owner, or if you would merely provide guidance and support. Can you clarify the services you’d like to supply?
Mokihana: We aren’t sure exactly how we could serve. Building a home such as ours for someone else is difficult at best. We are exploring the needs and listening to the queries we get. At this time we think the service we are able to offer is support and guidance through the process of planning and research and testing. The 10 Questions to Ask Before Building a Bird Cage is critical. If we are able to effectively work through these steps with a canary in need it would big. Perhaps the service is to work together with others as we continue to learn what it takes to live from an oasis on wheels. Go slow is our mantra, there’s no rushing the process of building safe and solid.
JG: Selecting tolerable building materials is one of the most critical stages of the building process for someone with severe chemical sensitivities. One wrong product could ruin the entire project for someone. If you were to build vardos for others from a distance, how would the materials selection work?
Mokihana: Someone with severe chemical sensitivities going through the process of building a safe home will need time to test for tolerance and have support/medical treatment/NAET treatments to sustain the trial and errors that are unavoidable. We see from the preliminary contact we are having with interested folk that this process of painstaking testing and support must be done prior to any building steps. Build a Vardo for others from a distance? Good question. We’re not sure of the answer yet.
JG: From your list of 10 questions for those planning to build a vardo: “Why do I believe a safe oasis room is right for me?” What was your answer to this question?
Mokihana: I wrote an entire story to answer that question on the blog Sam and Sally. A safe place seemed an impossible dream and our real life just had to be someone else’s science fiction. What happened during the alchemy of writing that blog and finally finding a safe-enough place was to build VardoForTwo. We have moved thousands of miles, searched places on both sides of the Pacific and each time we had to move again.
The safe oasis room on wheels became the right answer for us when our savings and resources could no longer pay the asking price for renting unsafe space and gravity was working against us as well. We are aging faster than we can continue to recover from Diaspora. The small space we have built is what we could manage and afford to build. If the choices of others affect us, we’ll move our home. When it boils down to is this: the inconvenience that make up our daily kuleana (Hawaiian word for responsibility) today is no less inconvenient than Earth’s endurances. We have admittedly been part of the problem when it comes to living with environmentally triggered illness. Now we have a chance to be part of the solution. Let’s see how well we do.
JG: What is your blog Makua O`o about?
Mokihana: Makua O`o in Hawaiian means “adult with digging stick”, and refers to the spiritual and life practice of becoming an elder. It is the practice shared with me by a great lady and teacher Aunty Betty Kawohiokalani Jenkins from Waialua, Oahu. This practice of learning to become an elder based on the teachings of ancient Hawaii is a corner stone of my life. It grounds me to look keening and broadly to my experiences while remembering Ke Akua (creator, mother-father source) is in all things. Makua O`o is my on-going practice of mindfulness that tethers me when life lets the air out of my balloon, and it reminds me of my roots to the culture of my mother. I took a break from writing the daily posts on that blog while we adjusted to life on the Ledge and began to focus on the possibilities for service through The Mobile Bird. That doesn’t mean this makua doesn’t need to practice using her o’o though. Perhaps the break from writing Makua O`o, simply means I needed more with the o`o. Time will tell.
JG: I think that is a beautiful approach to aging and a much more humane role model than the one offered by the plastic surgery-worshipping and diet-crazed culture we live in the midst of. Thank you for sharing your story with us, and for creating your entertaining and highly informative blogs. This is one canary whose soul has been enriched by the reading.
Julie Genser is the founder of PlanetThrive.com, a hip, rockin’ community for those who are ready to kick convention to the curb and reclaim responsibility for their health, and MCSsafehomes.com, a free service provided by Planet Thrive, Inc.
This article was originally published on the now defunct website MCSsafehomes.com on July 10, 2009 and transferred to the re|shelter website on February 22, 2011 under the original publication date.