Playing house in the desert © 1998 Julie Genser

In 1998, while backpacking through the Middle East, I fell head-over-heels for a dashing Bedouin living in the desert in southern Jordan. I stayed for 5 weeks, learning how to bake bread under the fire coals in the sand, play the Arabic hand drum (dumbek), and say “I love you” in Arabic. It was my poor man’s version of the “knight in shining armor” fairy tale–an exhilarating, romantic experience, but my love came in on a bone-colored camel.

The desert was harsh. It was winter and temperatures dipped low overnight, only to rise up again during the day. There was no heat or air conditioning to help maintain a comfortable body temperature. Running water was a luxury, and one that had to be hauled from a distance. It was difficult for a NYC grrl like myself. For various reasons, I left my new love and the desert, although the experience made a deep imprint on my heart. My decision to leave would haunt me for many years–did I make the right choice?

The irony of my life has not failed to escape me; I now live in the high desert of Arizona on 20 acres. I am as isolated as I felt living amongst a tribe of people whose customs I did not understand and whose language I did not speak. My ability to heat and cool my home is challenged. My creature comforts have been removed. Sometimes water is inaccessible. Was I destined for desert, no matter what choice I made?

You see, I am living with severe environmental illness. It’s a condition that came on slowly over many years, so subtly that it felt like a ton of bricks when it finally toppled me. Now my life looks like this: I sleep on a cold tile floor without any bedding, many nights my only source of heat is a one gallon glass jug filled with hot tap water (in a mountain locale where winter nights can drop to zero degrees), I cannot use air conditioners, overhead fans, microwaves, and other similar appliances, I have two outfits I can wear and I have to drip dry after the shower since I have no usable towels. I eat a very restricted–although healthy and delicious–diet. I have to buy expensive glass-bottled water. Going to public spaces is a health risk. I can barely go into health food stores (with their herbal-scented products) and the post office (most spray pesticides and air fresheners regularly). Most of my shopping is done via the Internet. I haven’ t see my family in over a year.

Basically, I have to monitor all incoming influences on my body and home–what I breathe, ingest, put on my body. If not, I get severe respiratory symptoms like tightening of the chest, neck and throat, swelling of my tongue, labored breathing, plus other fun symptoms like brain nausea, severe migraines, irregular heart palpitations, unrelenting depression, intestinal spasms, and itchiness all over my body. I am sensitive not just to toxic synthetic chemicals, but also to natural essential oils, organic cotton, wool and silk, burning wood, mold, the sun, certain sounds, vibrations, electromagnetic waves, metals, and people’s energy.

When I first got sick with severe food allergies, I enrolled in the Institute for Integrative Nutrition (IIN) in NYC to learn how to feed myself. I didn’t realize that the more important education would be about all those things that nourish us beyond the plate: relationships, career, exercise, passion, love. It was a transformative experience. In 2004 I left NYC to study permaculture at an ecovillage in Oregon. The experience of living in community was life-changing, but it was soon after the program ended that severe environmental illness stopped me in my tracks. I was forced to reevaluate my life goals, let go of all my dreams, and reprioritize my values. I’m still working on it.

Early on, I was compelled to develop a website to catalog all the valuable information I was finding on my health journey. I wanted to create a space that reflected back to me a world I wanted to (and could!) live in, since my current world did not support me. Although I was completely overwhelmed and disabled by my illness, I felt if I could just do 5-10 minutes a day, eventually it would add up to something larger. And so I did. Now, 7 years later, PlanetThrive.com is a bustling little holistic community for those recovering from environmentally based illnesses that caters to mind, body and spirit.

Drumming in my backyard © 2008 Scott Killingsworth

Through my website and outreach efforts I grew a network of friends around the world who share this illness and the insights into our toxic culture that often come with it. Those with a burning desire to thrive and not just survive are drawn to my site. I now find myself completely supported by close friendships, a loving boyfriend, and devoted “thrivemates.” I live in a “safe” house made of non-toxic materials and surrounded by gorgeous views on all sides. Through the challenges, I have learned to become grateful to my illness for all the truths it revealed. I love the person I am now much more than I used to be – if it were not for getting so severely ill, I would not have pared down my life to its purest essence, I would not have the knowledge I am armed with about how to cultivate health and avoid disease, I would not have met my soulmate, I would not have been forced to dig deep enough to pull out the strongest, bravest me.

If there is one thing illness has taught me, it’s that if I want to see change in the world, it has got to start with me. There is a ton to complain about in our fast-paced, dumbed down, electronically and chemically addicted culture. The surest way to feel empowered — to transform negative energy into positive — is to take action, right here and right now, to help shift the tides around you. I encourage all of you to take stock of your deepest passions and follow at least one of them to the ends of the earth, deep into the desert.