“An illness has enormous capacity to pull you into greater unconsciousness and it has an even greater capacity to awaken you.” —-Eckhart Tolle
When I was 45 years old, my life burned to the ground.
I became bedridden with an illness that my doctors could not identify. In between writhing in pain, I frantically researched online what was happening to me. My body was wildly misfiring and doctors clicked their tongues and wondered how the mind was capable of creating such drama. But they were measuring the wrong things.
That was two years ago. What followed was a collapse in my identities, one by one. First, I moved out of my boyfriend’s house. (I didn’t know it at the time, but it would be the first of twelve moves in one year, while sick.) Then I lost my job. I couldn’t take care of my son, so he stayed with his dad. My boyfriend disappeared for a while, then returned as a friend. The place I thought I held in my community dissolved when most of my friends dropped away. I began to wish I had cancer instead of whatever I had, because then at least my community would surround me and feed me, I thought.
Having a serious illness can be like walking into a house of mirrors with a baseball bat. After several reflections shatter, you want to smash them all to find out if any of them were real.
Five months into it, I got a diagnosis. Hallelujah! I rejoiced until I learned what the solution was. I learned that I had CIRS– Chronic Inflammatory Response Syndrome– or mold illness. Although it was an extreme challenge to even travel out of state to see the specialist who diagnosed me, the choice I now had in front of me was terrifying.
Since mold makes you sensitive to chemicals, and since there is no such thing as a mold-free or chemical-free environment, my choice was either to maintain my current path (investing all my money, energy and time in order to maintain my terrible quality of life) or I could choose what appeared to be the only realistic long shot hope of recovery. I could move by myself to the desert.
I resisted the long shot path for too many months . It became absolutely clear that I had to do it when I woke up covered in frost. Autumn in Maine. I was unable to be inside any building for more than a few minutes before my nervous system went haywire. I had to sleep outside.
I had to sell my car and give away anything that had been in the moldy house. I set off in October in a van, with all new clothes and donated items from Walmart for camping. I didn’t want to leave. I didn’t know where I was going. I was simply searching for a place that didn’t make me sick. I had no idea how difficult it would be to find. I felt like crap.
I was lucky that my family believed me and supported me from afar. Many people on the online forums were abandoned by their families. Over the course of this odyssey, I met hundreds of other environmental refugees, in person and online.
After driving around the United States for three months, despairing that I would ever find a corner of it that wasn’t polluted, I finally found a place. A hot springs in the center of a 3 million acre high desert New Mexico wilderness. Again, Hallelujah! (dot, dot, dot….wait.)
I found myself in a place that was so remote, not only did my phone not work, there weren’t even radio signals. There was no electricity and it got down into the teens at night. There were no showers or flush toilets. Since laundromats made me sick, I had to hand wash my bedding and clothing. That took several hours every day. I used to listen to streaming music constantly, so I didn’t have CDs. There was no music to distract me from the sound of water and birds or the cacophony of my dark thoughts.
There was internet in the valley, but it was very slow and I had to be in proximity to a building that made me sick in order to be online. I had never been so isolated.
I used to compost and recycle. I used to avoid Walmart. Now I was guarding my trash from wild animals and stashing it in trash cans at the gas station when I went into town. Walmart was the only reliably clean building I came to trust. The collapse of identities continued apace. Safe, middle class American, mother, productive citizen, dancer, New Englander… All shattered. I got to wondering what made me human.
I became an animal on a mission for survival that had no guarantee of success and lots of bedridden role models to remind me of the typical fate of someone with this illness.
I spent all day, every day working on keeping myself alive and clean and away from contaminants. There was no way to prevent all contamination, however. One day, a man rode his bike to visit me. He came right into my safe zone, upwind from my open van door and blew the fumes of hell all over me. I meekly said “You can’t be here,” while my knees buckled and the world spun.
He had contaminated my van and one of two sets of bedding. I worked for weeks to try to clean that bedding– I boiled it, soaked it, ozoned it, bleached it and eventually had to give it away and buy new stuff.
Alone with my mind most of the time, I was tortured by the thoughts of what my life had come to. I didn’t want to be alive any more.
There were wildlife sightings. A mountain lion had come through camp and I’d heard stories of a bear attack nearby a few years ago.
Eventually, my van no longer worked as a place to sleep, since it got contaminated every time I drove into town. I resorted to sleeping outside in a hammock. The air was great, but there was wildlife around at night. Locals advised me to get a gun, for my own protection. Everyone owned a gun. I looked at some, but opted against buying one. I didn’t trust myself with it.
I got a taser instead. I knew I wouldn’t use that on myself. From March to December, I slept outside in that hammock. If a mountain lion or bear observed me sleeping, I didn’t know it. Several times, however, Awareness woke me from a deep sleep to alert me to the approach of a band of javelinas (wild boar.) I clicked my taser and they fled. My heart pounded.
On one cold, windy night, I lied down on a cot inside a new tent. Within minutes, it was obvious that the tent was contaminated and that I would have a completely sleepless night. This was not unusual. I knew the only option was to get up, take a bucket shower and try sleeping elsewhere in my back-up bedding. I boiled some water and got naked outside in the freezing wind. I became aware that I was enjoying the hot water pouring over me under the cold, starry sky. It was magnificent! Aha…it’s my thoughts that cause the suffering! And I have a choice to not think them.
I started to see progress in my health, but after several months, I got a new infection. I struggled to keep myself clean enough to not go downhill. I wondered why I was keeping myself alive.
It was at this point that I met Michael.
He came to camp at the hot springs. After not more than ten minutes of chit-chat, he looked at me sideways and said, “I don’t usually bring this up, but I have two questions for you; What is your knowing that can’t be spoken? and What do you want from this life experience?”
I stammered to answer these questions and don’t remember what I said. But in the days that followed, I was in some kind of crisis. I kept going to deeper and deeper layers to answer these two questions to myself, over and over again. It seemed manic.
I had released myself from the seeker’s quest years ago. I had given up hope in it. Do I really want to rip it open again on top of my current struggle? It seemed I had no choice. Michael told me where I could find him, so I went to his house.
It was located in a scungy little dilapidated village, littered with 100-year old abandoned adobe buildings. The lot across from his place was strewn with trash, dismantled vehicles and scrap metal piles. But the gate to his yard was decorated with prayer flags and a golden metal lotus flower. Pulling into his yard, I saw elegantly tiled terracotta roofs, I heard bells and I smelled flowers. I had spent years in Japan, China and Nepal and this was one of the most beautiful temples I had ever seen. Jeez, who is this dude?
He was home and I asked if he would mind talking with me about something. “Of course,” he said, and sat there in complete presence. I found myself pouring out the details of my earlier life. Finding the Tao Te Ching and pestering my dad about learning how to meditate when I was a teenager. Taking a solo pilgrimage to temples around Japan on a motorcycle when I was 26. My profound restlessness and suffering after I had grounded myself in a marriage before I had found a teacher. I committed myself to that householder life by having a baby at 34 and it worked. It quieted my wanderlust and became my personal-growth path, but the marriage failed anyway. Being a seeker meant suffering, I decided, and I didn’t want it anymore.
But I danced. I danced so hard and so often that I became transparent. The whole reason to dance became the stilling of my mind so that I could reside in pure presence at least once a week. I knew this was connected to the mystery that had called me. But I didn’t know how to do it without dancing and I was too sick now to dance. Rekindling a hope that I could wake up in this lifetime felt cruel, as well as inevitable. It was true that I wanted nothing more. It had always been true.
Michael just listened. He teared up witnessing my suffering. He gave me a tour of his garden. He cultivated nine kinds of bamboo and “rescued” Buddha statues, although, he said, he didn’t consider himself a Buddhist anymore. He invited me to dinner and I burst out crying at the simple normalcy of sharing a meal inside a building.
He loaned me his audiobook copy of Eckhart Tolle’s The New Earth. I listened to it while I did laundry by hand for weeks. I had read the book years earlier when it had first come out, but I had not suffered enough yet to really understand it. This time it clicked.
“If you need a crisis, you will get one.” “Suffering is the greatest spiritual teacher.” “Luckily, life is merciful and generous and will provide you with the suffering you need in order to stop identifying with your life story.” I downloaded some Tolle retreats on Audible and devoured them. I started rejecting my “inflammatory” thoughts. Anytime I observed my mind thinking that things should be different than they were, I shut it down.
Michael then brought me to a retreat at a local center to attend something called “satsang.” I had never heard that word and the gathering was being held in an old building that I could barely tolerate, but once the teacher opened the room up for questions, I asked one. I had absolutely nothing to lose. I hated my life. I hated my mind. I hated my problem. I was willing to do anything.
The teacher’s name was Rishi. He had big, soft brown eyes and I instantly adored him. His questions were both relentlessly pointed and deeply compassionate. He gave me a tour of my own mind in front of a room full of people who had studied with him for years.
Over the next several months, I became dear friends with Michael, and Rishi took me on as a student. Both of these men had dealt with decades of chronic illnesses themselves. Michael was struck down with encephalitis when he was 36 and still dealt with intense, daily pain nearly 40 years later. Rishi navigated raising two children and teaching meditation while being intermittently bedridden starting in the 1980s. They welcomed me onto the well-trodden path, they said, of illness as a path to awakening.
Illness has a way of shattering your conventional reality and revealing the transience of all your capacities. That transience was always there, you realize, it all just seemed real and solid before. Illness has made countless people uncouple their lives from their “stories.” Your story can die, it turns out, and your life can go on afterward. They told me about how Ramana Maharshi, whose “story” died when he was 16, but who lived til he was 70 years old. He died of cancer of the arm without much treatment, but entirely without suffering, because suffering requires a story.
I started feeling lucky. My illness started feeling meaningful. My suffering dropped off precipitously, even though I was still constantly dealing with the same challenges of getting overwhelmed by contaminants that would light my body up like a wildfire. I changed where and how I slept each week, trying to stay ahead of the galloping inflammation and pain. But I got help from good doctors, got the new infection under control and made some progress.
Rishi helped me “drop it” over and over as I attempted to defend the reality of my mind-made identities. Just allow emotion. It comes through, but it’s not you. He said he could see who I am without these conditioned identities and simply held that vision of me each time until I could feel it myself.
Once, my twelve-year-old son made other plans on a Sunday night and didn’t show up for our regular Skype chat. I waited for an hour, sitting on a cold brick getting bitten by bugs outside my friends’ moldy house. I sat far enough away from the house to not get contaminated, but close enough to pick up their wifi signal. Defeated, I walked back to my campsite and completely lost it. I sobbed uncontrollably, sitting on the sharp gravel as it dug into my ass. I didn’t even wipe away the snot and tears from my face. I just witnessed my heart breaking further and further open, ever more exposed and raw. After about thirty minutes, my seemingly endless tears stopped and I got up and made dinner.
There have been times when I got overwhelmed by the sensation of being dismantled. Like when I realized that even all the good memories and all the things I was proud of were also figments of my imagination. It was easier to let go of the difficult things. “But ah, just wait til you try to drop the delicious, pleasurable things,” said Rishi.
Of course, my mind struggles to understand what is happening. There was a process underway that it wanted to take credit for and take control of. I demoted my mind. I “switched allegiance,” as Michael said. It is only from the perspective of mind that this is a process in time. Realizing that what is true beyond form is the constant, unchanging awareness does not require a path, a doctrine or a disciplined structure. It only requires that my mind get the hell out of the way, like during dance.
Rishi described using the mind “as a thorn to dig out a thorn.” It’s a tool, only, and in the end, that tool must also dissolve.
And so it continues. The inflammation, the illness, the constant striving for solutions, the disordered thinking during flare ups, the awareness that watches the show. My mind is still obnoxiously active, but there is much less suffering. And sometimes there is complete stillness and peace. There is resistance and identity and the dissolution of resistance and identity. For the most part, I don’t talk about this with the people in my life because I wouldn’t know what to say. The Tao that can be spoken is not the eternal Tao, right?
How do you explain that the worst thing that ever happened to me brought me to the heart of what I had always wanted? It doesn’t make sense to people that the baseball bat could be a blessing. Unless this consciousness is also emerging through them (whenever they run or climb or swim or sit and their mind goes quiet.) Then they know this too.
My son came out to visit me over Christmas break this year. He’s thirteen now. We had a magnificent three weeks together. He observed that I was different. How do you explain this to a kid? You watch the Matrix movies, of course! When I introduced him to Michael, I said he was like “Morpheus,” and when I introduced him to Rishi, I said he was like “the Oracle.”
I’m Trinity. 😉
A couple of short videos that illustrate the shift in perspective: