The Return

I have been back in Maine almost four months now. I was describing it to Stevan yesterday as feeling like being on a prolonged SCUBA dive. Apart from the dramatic physical and emotional ups and downs, it feels like I am constantly under pressure– like I am literally living inside a soupy substance that weighs on me from all sides and makes everything take longer. It’s exhausting.

 

This morning is typical. Since both my cargo trailer and the back of my truck became intolerable a month or so ago, I have simply given up on finding a good place to sleep. I just sleep inside my house every night now. It’s wonderful that I am able to do this and I am still deeply enjoying being in a real bed again, with cotton sheets and pillows after 2 years of cots and hammocks and sleeping bags. The downside is that I am unable to fall asleep because I react to my bedding, so I take Ambien. Too much Ambien. I wake up feeling unrested and achy. I also react to my own sweat because my body is constantly processing mold, so I literally sleep in a different spot in my bed every night. I have “events” like becoming reactive to my pillow or to the room, and then spend time wrestling my environment back “below tolerance.” If I can sleep at all, even with drugs, it’s a win. It’s better than feeling like I’m going to die or like I need to leave tomorrow. That was common in the first 2 months.

 

I yield mentally, mostly. I don’t fight it in my mind. I just wash and relax. I decided to prioritize routine and comfort over pristine environment. For now.

 

I can usually pull out of the yucky-morning-feeling. I drink caffeine, which I wasn’t always able to do. There are ways in which the healing process continued when I returned here (Adrenals! Woot woot!). But there are other ways that I slid backwards. I am constantly inflamed. My lower abdomen, in particular. My bladder constantly hurts, my digestion is off. I feel kind of buzzed all the time. Swollen. It’s a familiar pattern of pain and malfunction. I struggled with it the whole 17 years I lived here.

 

Mentally and emotionally, the re-entry to my hometown was intense. At first I felt like I was walking through a dream. I felt like a hologram walking through my memories of each street in my town that I’d traveled a hundred times. Many of my relationships dissolved. For a while, I concluded that those people who reached out to me or stayed in touch with me were “real friends,” but I now think that is too restrictive of a definition. It was, truly, the many people who reached out to me. But there is also a quiet way in which many other people who are not in regular contact with me can fall right into a space of connection and gentle care. My dear friends Bill and Larkspur come to mind. People who are simply willing to relate. And what can I offer as a friend? The parameters I had were unnecessary, and so they dissolve. 

 

I move through the world differently now. I’m not so reactive. I don’t preach. I feel lucky to have really basic things, like a flush toilet and a cup of tea. I feel the precariousness of any mental perspective– that the opposite is always true. I developed a very strong aversion for spending time on social media witnessing people’s mental perspectives. I hesitate deeply to put my own out into the world. I am not totally sure why I am writing this.

 

I came back here for my son. More specifically, I came back here because I had to prove to myself that I did everything I could to get back with my son, to assuage a yawning guilt and shame I feel about giving birth to a child and then leaving him. It’s a primal, visceral ache that might never go away.

 

I had to come back to learn that this ache is my ache, and not my son’s. Whatever pain he endured when he was 11, and I disappeared from his life because of this illness…it’s buried now. He has compartmentalized it, as children do. As we all do. Only later in our adult life might we bear witness to the patterns of conditioning that formed around these compartments in our psyches. We are protected from pain–thank god– and then burls grow around it, like a tree swallowing an old barbed wire fence. We remain safe. Until the conditioned patterns that kept us safe as children, start to keep us from feeling alive as adults.

 

Maybe someday my son will open the compartment. And maybe not.

 

Right now, he is fine. He is thriving. His dad is carefully and lovingly guiding him and helping him to develop the habits of a fine young man. He’s a considerate friend, he saves money and keeps his promises. He plays a lot of sports. He’s really good at school. He loves his iPhone. I stare at him in awe.

 

He is a beautiful boy. At 13, he’s growing almost an inch every month and now he’s 2 inches taller than me. I have felt so grateful to have time with him. But like most 13 year olds, hanging out with his parents is not the top priority. There’s no question that we thoroughly love each other beyond measure. But he says it’s OK with him if I return to New Mexico so that I can feel better.

 

My measure has been this: Can my health stabilize in Maine to a point where I could get a job? So far the answer is still no. My energy is not high enough that I can function without a nap every afternoon. I am able to run my two weekly rentals, which is good. I can do things like go for a hike, but I need to clear the rest of the day and the next day so I can recover. If I get a “hit”, I’m still down for a few days.

 

The most recent “hit” I took was changing the sheets in one of my rental units. I have been pleasantly surprised that I had not conspicuously reacted to any of my guests in my weekly rental units. I thought that was a possibility since I can react from hugging people here. I got through two months of guests before I had a woman who was sick. I found that I could not stand right next to her and I reacted to her bedding afterwards. I brought the sheets to the laundromat. I still feel weird 2 days later.

 

Like many mornings, I woke up today pining for the clean air in New Mexico. I can’t wait to get to the surface and take the SCUBA gear off and breathe real air. I can’t wait to get clean and stay clean for days. I just feel exhausted. Living here is incredibly hard on my body.

 

But I am glad I came back. I had to in order to “complete” a growth cycle, somehow.

 

I told myself that I wasn’t coming back to reconnect with Stevan, but that wasn’t true. There has been deep re-connection, as well as re-experiencing old patterns with a new level of consciousness. It is an irrevocable love for both of us. It never goes away. An expansion and contraction over years that has breathed us. Some of the patterns have cracked and dissolved, some may never. It is impossible to know if we will ever be able to ever be able to live together. So we love for now.

 

I have been able to experience some milestones with Gregory, my god son. I was here for his 13th birthday, I got to take him on a campus tour of Maine Maritime Academy and I was there when he surprised his dad by buying him a mountain bike. It has been a pleasure to reconnect with him. He got a puppy.

 

I have also been able to reconnect with Susan and Rosie and Willow and Jenna, four of my dearest friends here. I haven’t gotten as much time with them as I would like, but it’s pretty easy to make me happy with very little these days. I have also gotten to see my sister and brother-in-law, my dad and stepmom, my cousins, my aunt with dementia and my 92 year old family friend, Paulette.

 

It feels very much like a Hero’s Journey story. I am not of a mind that writing that story would be a valuable contribution for the world. I suppose that could change, but right now it feels very much like the most valuable contribution I can make is to show up right now, in every present moment, and to identify with the awareness rather than with the story.

 

I suppose I have written this in order to mark a turning point. This is another chapter in a story that I am no longer invested in. I am not the roles in my life. I am not a sick person. I am not my problems or my house or my story.

 

What happens next?

 

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The Importance of the Clean-Break

When practicing an extreme-avoidance-protocol, mastering the art of the “clean-break” can offer crucial boosts in your healing. When detoxifying from an environmental illness, your body can go through a phase of hyper-reactivity where tinier and tinier amounts of environmental toxins can initiate a large inflammatory response.

What is a “clean-break?” It describes the process of getting your environment all-clean, all-at-once. This is especially crucial for sleeping, so let’s walk through what a clean-break means for a sleeping situation.

Firstly, it means calibrating your bedding to only what can be cleaned in one day. If you are hand-washing your bedding, you need to have have enough blankets to keep warm, but not so many that you can’t get them all washed and dried in the same day. (In the winter, that ratio can be difficult to achieve, so it helps to have 2 or 3 sets of back-up bedding in your “clean box.” (Always store clean things in boxes that click shut.)

If you can afford it and you have a safe, mold-free, frost-proof zone, get your own brand-new washing machine and share it with no one.

We detox through our sweat and breath and therefore bedding needs to be cleaned not just from ambient toxins and spores, but from self-contamination. For many months, I needed to have a clean set of bedding every other day. If you are able to pull this off, it allows for a faster detox and recovery.

In order to have bedding that can be fully and thoroughly cleaned, it could be that you may need to sleep for a while on a washable surface, like a Thermarest. Part of the clean-break will be that you scrub the Thermarest with a soapy scrub brush (which is not used to clean anything else,) and leave it out to dry in the sun.

Next, you will want the blanket and/or sheet on top of the Thermarest to be washed, along with your blankets or sleeping bag. Everyone has different tolerances, so you will have to discover for yourself whether you can tolerate cheap fleece blankets and nylon sleeping bags or whether you need organic cotton and wool for sleeping.

Of course, the ideal for warmth and ease of handling is down. If you can afford a down sleeping bag, you might want to invest in one so that you stay warm in the winter. I have had success with this brand. You will need to wash it an absurd number of times, however, and leave it out in the sun to dry. It may not last more than 2 or 3 months, but so what. If it’s a choice between ruining a $200 sleeping bag and a) sleeping cold, or b) sleeping contaminated, it seems like a small price to pay for two months of sleep.

Since pillows are not easily washable, I settled on using wadded up fleece blankets as a pillow, and it works well. I wad it up in a circle so there’s a space for my ear, if I’m sleeping on my side.

Okay, now that your mattress, pad, sleeping bag, blankets and pillow are clean and dried in the sun in a clean area, let’s think about pajamas.

Sara Riley Mattson, the Girl you want to Camp Like, was my coach in the early part of my mold avoidance sabbatical. She suggested pajamas that work so well, I still use them. Knowing that mold-avoiders do better sleeping in fresh air, she suggested buying cotton hoodies, long underwear bottoms and the 6 pack of men’s cotton t-shirts to use as pajamas. These are cheap enough to replace a couple times a year, which you will want to do when you are detoxing heavily.

In addition to these, you want fluffy, ugly socks (so you won’t be tempted to wear them anywhere but in bed,) and a fleece hat (which is crucial, since you usually have wet hair when you go to bed.)

When achieving a clean-break, every single one of these items will be freshly laundered. I have learned the hard way dozens of times that having a hat or socks that were not freshly cleaned could ruin the whole clean-break.

Before you put on your pajamas, you need to be clean yourself. You go straight from batheing to bed. You don’t get into your car, you don’t check your email on a problematic computer. If showering means passing through a questionable area, you wear a “transitional” set of clothes– not day clothes, but not ultra clean pajamas. You change out of them and into pajamas right before you get into bed.

Likewise, when you rise in the morning, you sequester your pajamas in a clean box or bag. If you plan on wearing them twice, at least change your cotton t-shirt. Your pajamas should never cross paths with contaminated items, if at all possible.

I can’t emphasize this enough: when you go to the absurd, extreme measures that mean that everything that touches you is the absolute-cleanest it can be, you will be rewarded with a whole night of feeling peaceful and sleeping well. This break is the rest that your nervous system and immune system need in order to heal.

Although it sounds like a ridiculous level of attention to detail, it actually becomes quite routine after a while. It becomes second nature and much easier once the pattern is established in your life. If it all sounds quite overwhelming, don’t worry.

You actually don’t want to go from a fully contaminated space to a wilderness clean-break. You would start dumping toxins too quickly and that is very uncomfortable. The ideal is to achieve the cleanest-break you can create in the setting you are in. As you progress through detoxification, you need to steadily improve your environment or find one that is next-level cleaner.

You can apply the principle of the clean-break to your car before a long drive and to your living space.

In a world where there is no such thing as a mold-free or chemical-free setting, perfecting the art of the clean-break can be the closest thing you can find to the “bubble” that we need in order to heal. The best news of all: It works!

Illness as a Path to Awakening

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 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?IMG_20180228_174444

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 have 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 consciousess 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.” That’s all either of us needs to know.


A couple of short videos that illustrate the shift in perspective:

Slomo: the Man who Skates Right off the Grid (16m)

Martin: a film by Donal Maloney(9m)

 

Things That Have Helped Me

 

  • Hiring a coach to get started on the mold sabbatical. Sara Riley Mattson, the author of Camp Like a Girl, was the role model who made me believe I could take my life back.
  • Finding mentors and allies in person and limiting my time on Facebook groups after I noticed how terrified I was each time I did online research.
  • Moving in stages to places that were a little cleaner each time.
  • Ending up in a wilderness area, sleeping outside in a hammock for a year.
  • Taking glutathione to get toxins out of my tissues and then taking binders to get them out of my body, even when no new exposures. (Don’t stop the binders!)
  • Taking extreme measures to maintain extreme cleanliness of bedding, like
    • Washing the hammock and all contents every other day by hand
    • NOT using public washing machines
    • Only washing and hanging bedding on line while freshly showered
    • Only making my bed while wearing clean pajamas
    • Hanging bedding on clothesline at most pristine area on my land
    • Using Downy free and gentle in both wash and rinse
    • Keeping pajamas and bedding separate from all other laundry, even when dirty
    • Scrubbing thermarest every other day with soap and scrub brush, sun dry
    • Maintaining at least 2 complete sets of bedding, clean at all times (2 hammocks + 2 thermarests+ 2 sets of blankets)
    • Wearing pajamas only once before washing (maintaining 3 sets)
    • Replacing all bedding and PJs about every 4 months
  • Having Plans A, B, C and even D for sleeping. I have gone all the way to F once.
  • That means always having clean back-up bedding and a back-up to your back-up.
  • I use Kavinace Ultra PM (a neurotransmitter sleep aid) and get a 12 hour night’s sleep once a week. I rotate about 6 sleep remedies. (Chinese herbs, Western herbs, Ambien, Zyflammend, Kavinace Ultra PM and Melatonin.) If I am really clean, I don’t need any.
  • I find that if I get a good night’s sleep, I can tolerate contamination during the day better and can relax a little about keeping daytime areas as clean. (Like my car.)
  • I support my adrenals with 2 protocols (Dr Lam products) and it lowers my reactivity and helps stabilize sleep and hormones.
  • I try one new remedy each month, drop one, and keep the ones that work.
  • I have simplified supplement/medication routine where I take everything in the am and pm. Therefore I don’t take VIP one spray 4x a day, I take it 2 sprays 2x a day. If it doesn’t fit into my routine, I don’t do it.
  • I keep all my clean clothing in a box and clean bedding in another 2 boxes. I don’t leave clean things open to the air if I can help it. It protects them from surprise contaminations and makes decon easier.
  • I have an ongoing maintenance Anti-MARCONS protocol (colloidal silver+Xclear and EDTA spray) so that VIP continues to work well. It’s working.
  • I soak in hot springs regularly. It helps detoxification, gets me cleaner before bed and relaxes my nervous system. It also allows me to socialize because the other people are clean. Find Hot Springs near you. 
  • I go to town as infrequently as possible and plan meals accordingly.
  • I aim to eat an anti-inflammatory, low-histamine diet. But I have treats too, so I don’t hate my life.
  • I don’t stay on my computer very long, as it makes me inflamed.
  • I am aware that a sense of safety and routine even in a non-ideal environment is better (by far) than complete upheaval and fear in a cleaner environment.
  • I don’t just meditate, I reject the “inflammatory” thoughts that arise, whenever they arise. I refuse them. I listen to the retreats by Eckhart Tolle on Audible.com when I wake up during the night and let his wisdom saturate me. I have become aware that my suffering is from my thinking and that I can choose to be present as awareness instead.
  • I experience sensations in my body and don’t attach “story” to them. I watch my fear and it always dissipates. 
  • I don’t take this experience personally.
  • I rejoice in and enjoy the “good spells” but I won’t let myself get attached to them. They always end, but that’s OK because I don’t expect them to last.
  • I don’t force a feeling of gratitude, but it spontaneously arises for very ordinary things. (like a hot cup of tea, a good night’s sleep on my cot, a walk.)

 

Retraining the Brain

I have been assiduously following mold avoidance, and it is clearly crucial. However, I am still hyper-reactive long after I have finished detoxing from the initial toxic overload.

It’s time to start researching which of the brain retaining programs I am going to delve into to coax my limbic system into a different reality.

or this, which was recently recommended to me by my mentor, Sara Riley Mattson (who benefited from Gupta, but said she liked this one even more:)

I’m reacting too much to my computer, just now, so must stop for now and read more offline.

Peace!

Resources for Healing

A nutritional approach is crucial. Detoxification is often impaired at the time of some toxic exposure. Everyone’s presentation seems to be quite individual, yet clean, wholesome food is a universal need.

Many people deal with an impaired intestinal lining, or “Leaky Gut Syndrome.” It’s best to heal that before taking probiotics, as putting probiotics into a permeable gut can increase inflammation. Do the “Specific Carbohydrate Diet” for at least one month.

A longer term healing diet that benefits bodies that are affected by biotoxin overload, orthostatic intolerance, impaired sleep, weakened adrenals, hormonal chaos and systemic inflammation is a Paleo Diet.

Sometimes going further into a ketogenic diet is required for healing. Often that is temporary, a matter of months, but in some cases (Epilepsy, Alzheimer’s Disease) people can benefit from a permanent ketogenic diet.

Love’s Not Time’s Fool

Two people are compatible when what they consider to be “real” overlaps substantially. But of course that mental concept of reality can warp and bend over a lifetime, since it has, itself, only a relative truth to it. Some ideas, like future, can implode on their own with just the lightest breath of a butterfly’s wing.

 

I thought, twice now, that my mom-group of girlfriends would be friends for life. A divorce or two ended that first illusion and the second group, though more “real,” still blew apart after bigger crises. One of us died. One of us got cataclysmically ill. One moved home to England. The one who was left was never the same. Future isn’t “real.”

 

It can really hurt when a future you thought you had evaporates. When a loved one dies or gets sick, when a relationship dissolves, it can hurt and hurt and hurt and hurt. Until one morning you realize that it doesn’t hurt when you don’t think about it. And then you realize that it’s actually the thought “This shouldn’t have happened,” that hurts, and when you reverse it and think “This was supposed to happen,” it doesn’t hurt as much. Better yet, when you don’t think anything and instead turn your attention to the smell of sunshine and the shadows of tall grasses waving in the wind, everything is fine.

 

When one person in a couple comes to the conclusion that the sunshine and the grass experience is more real than the “This shouldn’t happen” experience, it can affect compatibility. Or perhaps they both know that being present is important, but one of them thinks that the disgruntled, fickle, ecstatic roller coaster of mind is a different, but equivalent reality. Mind is a very sneaky trickster that is always vying for that perspective.

 

How do you ever know anything? People know things “in their bones” to be true. You can’t talk someone out of a knowing like that. That kind of knowing has nothing at all to do with the exchange of ideas. It comes from lived experience, decorated with ideas. You know what a burn feels like and what drinking clean water when you’re really thirsty feels like. You know what sunshine feels like on your skin and the difference between being treated with dignity and with disdain.

 

Most people trust their knowing and defend it rabidly. But there is a space in between a sensation like thirst or pain and the mental story of why. The story can increase the pain immeasurably. Removing the story can quiet the pain down. It makes sense that a burn hurts more when it is caused by someone who is supposed to love you putting a cigarette out on your skin versus a burn you get protecting your child from fire. Then again, people can have the wrong idea about how they got their burn, but they still have it and need to treat it. Changing your idea won’t make a flesh wound instantaneously heal.

 

When you asked me, “How do you know it is caused by mold?” I was taken aback. I asked you, “How do you know you have to pee?” and then, “How do you know that peeing will make the sensation go away?” The answer, of course, is years of experience of it being true. “I pee and the sensation goes away.” With mold avoidance, I feel clean, and then I get something problematic on me (presumably mold and/or chemicals) and when I wash it off, my sensations disappear. Over and over and over. Sometimes several times a day for almost 2 years now.

 

I set about trying to convince you of my experience, talking about my lab tests and very smart doctors and scientists who are experiencing and measuring the same phenomenon. I talked about the thousands of other people who are also healing this way. It occurs to me that if you had stayed to witness the daily details of my decline, it would be as obvious to you as it is to me.

 

I wish I hadn’t gone down that path. I will know next time. I am deeply uninterested in defending my identity as a person-with-this-illness. I am simply living everyday in the spaces that do not cause my body to go haywire. It’s very simple.

 

My lived experience was not compelling to you. These facts and scientific evidence were also not compelling to you. Your conclusion was that all illness is ultimately caused by stress. Your body has been so vigorous and strong all your 61 years. You’ve never had a serious illness or a natural disaster puncture the delusion that you are in control. Whenever you had experienced injury or illness during your life, your story that “stress was the cause” always felt true. Likewise, unwinding and “stretching it out” has always seemed to work for you. You confused the lens through which you perceive the world with “Reality” and suggested, ironically, that the lens through which I perceive the world is flawed. Lenses are all inherently flawed and can only ever represent a relative truth. It’s just our meat suits spinning sensations into stories.

 

Then you mentioned the ACEs study. The Adverse Childhood Experiences study conducted by Kaiser Permanente in the 90s. You pointed out correctly that I have a medium-high ACE score. People who have high ACE scores, as the study found, have higher rates of chronic illnesses like heart disease and diabetes, higher rates of autoimmune disorders, higher levels of addiction and obesity and they die earlier.

 

I agreed with your thesis that emotions inform the development of disease. It’s not wrong. But how many millions of smart people have been sick for how many combined years with how many brilliant doctors trying everything to help them heal? You may know in your bones that this is a key, but so what? There are 20-30 million people worldwide suffering from ME/CFS alone and telling them all to “de-stress and stretch it out” is no brilliant solution. In fact, it’s arrogant as hell.

We discussed brain-retraining programs. I knew that would be a part of my healing, but I had not gotten stable enough to do one of those programs yet. One of the things I learned in my relationship with you is how to honor you and your process. I learned that you move forward at your own pace, according to your own inner guidance, no matter what my opinion was. Oh the irony.

Unconvinced, you made me promise to keep my mind open to the possibility that it’s NOT really mold that is causing all these problems. You asked me to explain what seemed to you like inconsistencies in my reactivity. Then you pointed to the comment I made to my doctor about getting attention as a kid when I was sick in the hospital. So therefore it can’t be mold that is making me sick?

OK, let’s now talk about YOUR reality. How do you “know” you are meant to work with horses?? Yes, I know, you feel compelled to be near them and you feel so much better once you are with them. But it has come at a steep price financially and socially to keep creatures that don’t remunerate you, that you then have to protect. Perhaps there was some trouble in your childhood that could explain such an irrational urge? And why should I accept your explanation of this state of affairs, when I can create my own and try to compel you to align with it?


Why, indeed, was it so important that you impose your viewpoint on the cause of my illness? What’s it to you if I found something that is finally working for me? Can’t you see how much better I am? It is keeping me from
dying. Why quibble? How about you keep your mind open to the possibility that you will eventually realize that I am right about what is happening to my body?

Were you loving me by coaxing me to a conclusion that denied the overwhelming evidence of my lived experience? For those of us who throw it all on the line to isolate mold as a variable in our illness– an exceedingly difficult and expensive thing to achieve– there is no reason to pursue it other than it’s what works. So believe me.

You have recently radically changed your diet to what I had more or less suggested years ago. In addition to feeling amazing and smelling so good, you remarked that it is easier to keep emotionally and mentally more steady as a result of this change (as I had suggested it would.) Hurray!

Whoops, was I just taking credit for your successes based on a story that reinforced my lens? Because if we don’t have some overlap on what we agree is “reality” then I get anxious that perhaps we don’t have a “future” anymore?

 

Is that what you were doing?

 

It’s not just that our lenses on reality have diverged. No, it’s more radical than that. It’s that I no longer believe that my lens IS “reality.” And neither is yours.

 

I struggle to meet you where you are, still grieving the life we “should have had,” still deriving identity from possessions and concerned with things like mortgage payments and “normal” vacations, while I am emerging, blinking and wing-scorched, from the pile of smoldering ash.

 

While you felt you were “with me” (presumably in spirit, since you sure weren’t actually physically around for this) I was breaking apart like a meteorite entering the atmosphere. My identities as a friend, a social worker, a young, beautiful woman, a mother, a dancer and your partner were popping around me like bubbles on a sunny day. Pop! Pop!!There goes another one! Not real! Sorry!

 

Each identity showed itself to be a mirage. A temporary hologram based on conditions that changed all at once. I have seen my mind, all human minds, as the projectors of holograms.

 

So while you were trying, for whatever reason, to convince me that your version of reality was more real than my version of reality, I was trying to say “No! They are both not intrinsically true!”

 

The only thing that is intrinsically true does not have anything to do with mind. Your mind or my mind. It doesn’t make any difference. This, too, didn’t feel true to you. Uh-oh.

 

After our heated discussion, I went to bed conflicted. “How can this be that our versions of reality are so different now? How do I reconcile this?”

 

I crazy-love this man, but I can’t imagine a life where my every self-care decision is scrutinized for legitimacy. But it also dawns on me how deeply this man must love me to have stayed connected, to even consider moving to be near me this winter, when he doesn’t fundamentally believe the premise of how I need to live. I realize how far out on a limb he has come to even be with me here now.

 

I did not give it to my mind to solve as a problem. I gave it to the deeper truth and in the middle of the night, I received the answer fully cooked, like a rack of lamb emerging miraculously out of a cosmic oven, succulent and perfect.

 

It came as a deep knowing (yep, I knew it in my bones) and it was accompanied by a silken, glowing sense of peace and rightness. A knowing that needs no story.

 

We can’t be together anymore.

 

Since I no longer believe in “future” either, it added, “Right now this is true.”

 

And then I fell back into a peaceful sleep. 

 

The grief came later.

 

Whatever it Takes

You might notice that your body can become as unreasonable as a newborn baby. Do newborns care if you were sleeping? No. Do they retract their demands if you are sick yourself and haven’t slept for three days? No, they don’t. Even a healthy newborn is as unreasonable a human as you can find and it doesn’t matter what challenges you are facing, they will still need what they need. There is no compromising.

 

Healing from CIRS can be like that.

 

The things that you will be required to do in order to inch forward are totally unreasonable and absurd. And you still must do them. Your body needs what it needs.

 

What it needs is an unreasonable level of cleanliness that is nearly impossible to find or create. Your water, air, clothes, bedding and car need to be immaculately clean. Since it is impossible to clean them all at once, you clean as much as you are capable of cleaning in a day. You will eventually collapse from fatigue, so you need to prioritize what you clean each day and your bedding and pajamas always get top priority so that you have something to collapse into. You will go through times when you to have to clean your bedding and pajamas every single day. You will also want to always have a back up set of bedding and pajamas. I know. It’s totally unreasonable.

 

This is why I can’t stress this enough; Get to the wilderness.

 

It is SO much easier to keep your stuff clean when the air around you is clean and the water you use is already clean. You don’t want to have to be in a situation where you need to clean the air before you breathe it, or clean the water before you drink it or to wash your things. It never works well anyway and it is even more work.

 

So that is #1 unreasonable demand on your life; Get to the wilderness, a state or national park, Bureau of Land Management (BLM) land or anywhere that is as far enough away from human development you can get and still meet your survival needs. It can seem impossible and scary but if you have to, you will figure it out.

 

After that, there are a thousand other unreasonable-but-mandatory things that will get thrown onto your to-do list against your will. Sleeping in contamination is so dangerous and so uncomfortable that you will become willing to do anything to avoid it.

 

Did you just spend hours hand-washing all your bedding and then wear the wrong hat to bed? You will have to hand wash it all again tomorrow. Maybe even right now.

 

Did you clean your car and then go into town to pick up your meds? You may have to clean it twice in one day.

 

Is there no one who can help you clean out your basement, which is the first –possibly futile– step in trying to save your house? Keep trying and find someone. (It is SO dangerous for you to re-expose yourself that you MUST find someone else to do it. One re-exposure could be the difference between you recovering to a functional life and you recovering to a permanently annoying half-life.)

 

Is your car/house contaminated but sleeping outside will be cold and scary? Do it anyway.

 

Is your house OK but your neighborhood contaminated? Put your house on the market.

 

Do you need to hand wash all your bedding and pajamas every single day in order to get 3 hours of sleep with Ambien? Get started.

 

Do you need to spend the last of your money on trying new strategies from the Toolkit to clean your stuff? Did it not work and you have to buy new stuff anyway? Normal.

 

Do you need to undress right inside the door and put your dirty clothes into a mylar bag and go shower in order to keep your safe space safe? So does everyone in your family everytime they come home? Yep.

 

Do you need to wash your credit cards and soles of your shoes each time you come back from the store? You are not the only one.

 

Moldies have hundreds of stories like this, each.

 

This is a totally unreasonable illness and the sooner you settle into the normalcy of this unreasonableness, the easier it is somehow.

 

I know this is a shitty, overwhelming thing to read. I’m sure you are hoping this won’t apply to you and I’m hoping that is true too. I know there are people who have an easier time of it. I think it depends on your genetics, how sick you got, how long you were sick and how completely you can achieve a clean break from the contamination that made you sick. Different contamination won’t irritate you as much, at least for a little while, until you get sensitized to it. Anecdotal evidence suggests that sensitisation to new/different contamininents takes less than a week.

 

This is the problem. Almost all of our proof that extreme mold avoidance works is anecdotal evidence. There are stories of miraculous recoveries from people who have been willing to do anything to get clear of contamination. There are no statistics on how or why this works because it is still the early days of scientific understanding of this illness.

 

So the number one step of the Shoemaker Protocol– to get away from mold– can be one of the most unreasonable directives you will ever receive.

 

But know this: It doesn’t have to be perfect. It just has to be a little better than the last place you were in. Each time. You will heal in increments. You are capable of accomplishing this. When you have no other choice, you become amazed at what you are capable of. If you have ever succeeded in raising a child, you have already accomplished meeting the needs of someone who is completely unreasonable. Now it’s your turn.

Coming to Grips with this Diagnosis

Getting a diagnosis of CIRS can be beyond overwhelming. There is no other diagnosis that brings with it such relief that you finally know what it is and how to fix it, followed by the slow, sickening waves of realization about how devastating “the solution” is. Contrast it with a diagnosis of cancer, which is utterly terrifying. With cancer, there is a huge amount to research, a sickening sense of uncertainty and mortality and a scary, expensive, time-consuming path to healing with “odds” of survival. Cancer is a huge bomb that drops onto your life, perhaps one that you know about personally.

 

With cancer, you may, amid the disruption, feel the outpouring of care from your family, friends and community. Someone might start a Mealtrain for you. People come to visit you. They feed you. Bring you flowers. You probably get to stay in your home, with all your tiny routines that function as a basis for any growth or striving or healing. You might get to sleep in your own bed, with all the coziness, warmth, security to nurture you through the aftermath of the bomb. It might bring you closer to your family and friends.

 

When the CIRS bomb drops, there is no Mealtrain. Your family and friends have never heard of this illness, and while they acknowledge that you are sick, they secretly wonder to each other about your mental health. Your visits to doctor after doctor yielding nothing more than “Your blood tests are all normal” has you wondering about your own mental health, too.

 

When you finally find a doctor who can do the correct bloodtests and who can tell you confidently that they have seen this before and they know what to do, well…you feel a tremendous sense of vindication. Phew!! Followed by anger. Why was this so hard? Why didn’t they believe me? The memory of arrogant doctors dismissing the agony you were in by telling you it was probably psychosomatic can make your blood boil.

 

The relief of finally knowing that there is a path to wellness starts to give way to alarm as you learn about what it is. Goodbye cozy bed. Goodbye family. Goodbye beloved house in which you have lived your cozy life. Maybe you will try to fix your house and come back to it. It’s a crapshoot, but in the short term, your life will be disrupted. Where can you live? Where will you sleep? How soon can you stop feeling like shit?

 

A Mealtrain right now would be awesome because you can’t find your fucking toothbrush. When your sense of place and all your tiny systems disappear, your nails get too long because you don’t know where your nail clippers are. You miss your medication doses because you’re not sure where you left your meds. Or you simply lose track of time because you’re not sleeping normally and feel like you somehow appeared in the middle of a dystopian novel where all your friends are suddenly too busy, and people who love you still stay away because they say they fear they might make you sick. You are hard to be around.

 

You suddenly have ten times more laundry than you can physically do in a day, but you are too scared to let anyone else touch it to help you. You start becoming scared of everything. “Is this object covered in the substance that made me sick?” You can’t see it or smell it. You can’t even feel where it is coming from at first. You are just learning that it exists as your own private invisible kryptonite, but that other people can eat it for lunch. You drag your sorry ass on survival missions to get food and do laundry and you bump into Facebook friends whose eyes glaze over when you start to tell them how your life is unraveling. They let you know that “you look good!”and then tell you “Let me know if there’s anything we can do!”

 

Next you realize that all the places you normally go could be contributing to the problem. The bank, the hardware store, your friend’s house, the car repair place. “Do I literally need to change my clothes and wash my hair after every store I go into?” It’s impossible. You bring the yuck into your car. Then stop feeling safe in your car. Your feeling of being safe in the world gets washed away like dust off your windshield in a monsoon.

 

CIRS has a much lower morbidity than most cancer diagnoses, but while a cancer diagnosis typically connects patients to the people in their lives and with their will to live, a CIRS diagnosis drives people away and connects you with your will to die.

 

When this happened to me, I began to feel a commitment that I would not commit suicide because I wouldn’t want to trade my pain for their pain like that. I could vividly envision the suffering of my son and my parents and my sister and my friends. But since I can’t be around my loved ones anyway, I sometimes get to feeling like I am holding a spot in the universe simply to prevent my loved ones from feeling the grief of my death. There are still days in which it feels like there is no other purpose to my incredibly grinding routine of uncomfortable survival than to postpone the date of my own death for their sakes. At least with cancer, it would be out of my hands.

 

No, I don’t want to die. But there are certain lives that include so much suffering that you don’t blame the person for wanting to die. Especially when they don’t realistically have a sense of future without the current suffering.

 

But there are a couple of crucial things I have learned on this path through hell.

 

Karen Dean reminded me that the struggle WILL come to an end. It is longer, more absurd and more grueling than anything you have ever even heard of, but there will come a time when you will have figured out how to sleep, how to have routines again and how to accomodate this new reality. And you will have fun again. She reminded me that people who commit suicide don’t ever get to have fun again. “I have had so much fun in the last few years!” she said. Someone she knew who committed suicide ten years ago hasn’t had any fun.

 

You will dance again, and make love, and eat delicious food. You will laugh again. It’s true. I have.

 

Your life might have gotten blown to pieces and you might never get back to how it was before, when you loved your life before. But I have also learned that there are things to love about this new, reconfigured life. No, I don’t have my son. It’s like a knife in my stomach when I think about it. But I woke up in my hammock in this wilderness and watched a great blue heron fly overhead. I have a daily routine of slipping into a hot springs and meditating while I look at the mountains. I know the phase the moon everynight without trying. I never noticed that before. I know what time it comes up (50 minutes later each night) and that I don’t need a flashnight when it’s waxing but I do need one when it’s waning.

 

There are certain lives that include so much suffering that you don’t blame the person for wanting to die. But I don’t have one of those. I am not a refugee fleeing a war zone. I am not a sex slave in a human trafficking ring. My child isn’t dead. My government isn’t trying to exterminate me. I feel like Sophie in Sophie’s Choice because I had to choose my health over being with my child, but I have enough food and I am physically safe and I even enjoy myself sometimes now. I am becoming a part of this new community I had to flee to. I can’t go home without getting sick, but there are really cool people here, too. There are kind, generous people everywhere. And I attract them, apparently.

 

I still have to live outside and I still constantly have crazy health problems that keep me from sleeping and require that I handwash all my laundry. But I have routine now. And electricity. And it’s no longer winter. I am still cold at night in my hammock, but I am OK.

 

I have learned that I have more choice about my suffering than I thought.

 

I have learned that there is a mental fork in the road that I encounter when I am having a problem. One fork is a path towards flipping out, spiraling into depression and despair and comparing my life to the life I had or one I’m “supposed to have.” I have learned that I actually have to contribute extra energy to animate all that suffering on that fork.

 

The other fork is completely different. On this path I stay in the present moment. In the present moment I am aware of how lucky I am. I have the freedom to take actions that can alleviate my physical symptoms. There’s always something I can try. I am not trapped. Sometimes that might include heating water so that I pour warm water over myself at 2am in the moonlight. It’s cold at first, and then I realize I am enjoying it. I might have noticed a sense of dread, but then I watched the dread from the sidelines, instead of inhabiting it. And look at that, I actually enjoyed that shower instead of using it to shore up some sense of resentment at the travails of my life.

 

I can suffer less even when my circumstances haven’t changed.

 

It has occured to me that there might be a purpose for me afterall, beyond staying alive so that my loved ones don’t grieve my death. I don’t know what it is yet. But I don’t have to know yet.

 

I can use my mind to solve my problems without giving it the power to send me into despair with its fictional stories. I can turn it off and pay attention to now. I am alive on planet Earth in this spectacularly beautiful, primordial place.
It is impossible for me to “schedule” my recovery and plan a future. I have no idea what will happen. The best I can do is to make wise choices now towards the future I would like to have, knowing that the “future” is an ever-changing figment of my imagination. I can’t will it into existence. All I really can do is stand at this fork in the road and choose one fork instead of the other. Over and over.

Mold Avoidance 101

The point of mold avoidance is to remove something you can’t see, smell or taste, but you can still feel it. There are colonies, spores, toxins and super-toxins. It helps to find a way to understand them and conceptualize them in order to contain them.

 

Spores always originate in colonies, which are the motherships of mold. If you have an active colony, you have a mold factory spewing out spores. Colonies are what hide in wet places. In your walls, under sinks, etc. If you can find and get rid of your colonies, you have a chance of cleaning up the spores afterwards. But there is (almost) no point cleaning up spores til the factory that makes them has been shut down.

 

In the category of spores, there are benign ones that feel fine, mutated ones that make you sick and then the super-toxin spores which are so new, there is no scientific way to measure them yet. (The 5 worst mutated molds for health are represented in the HERTSMI mold test– Aspergillus Penicilloides, Aspergillus Versicolor, Stachybotrys, Chaetonium and Wallemia Sebi) The super-toxin spores make the HERTSMI spores look like cute puppies. They will make your life hell until you escape them which is difficult to do because they are insanely cross-contaminating. More on that later. Trying to eradicate spores can end up killing the spores and breaking them into pieces which does not solve your problem. Spore fragments of dead spores can no longer produce toxins, which is good, but they are inflammatory in and of themselves.

 

Toxins are the chemicals that spores produce. You may have already had someone give you advice that “all you need to do is bleach it to kill the mold and then you’ll be fine.” That is a sign to never take advice from this person because they don’t know the basics of how this works. Spores are less of a problem than the toxins they produce. Toxins are chemicals. You can’t kill chemicals. But if you come at spores or colonies with bleach or any other method intended to kill them, you piss them off and they… spew chemicals!!

 

I envision mold spores as like skunks under your porch. You want them gone, but you don’t threaten them with scary weapons. You coax them out, you trick them, entice them, cajole them, but under no circumstances do you crawl under the porch with a stick.

 

The toxins are way more difficult to remove than the spores are because they bind chemically to surfaces in a way that soap can’t get them off. This is why your belongings often can’t be cleaned if they have been inside a moldy house. (See The Toolkit for a list of things that people have used in the effort to clean their stuff.)

 

Everyone has different mold perception symptoms, but sometimes they overlap with other mold avoiders’ symptoms. As you go along, you might notice that you get different sensations for different microorganisms. My perception is that toxins sometimes feel different than spores. Different toxins give me different sensations, but usually cause tinnitus, and all-body sense of shakiness, like I am being poisoned. (They are neurotoxic. Think Sarin gas in the subway.) If I walk through a cloud of toxin, I may not need to decontaminate. If I walk through a cloud of spores, I will need to.

 

Erik Johnson, the grand poobah of mold avoidance, was trained as a chemical and biological weapons specialist in the US Army in the 1970s. He succeeded in regaining his health by dealing with mold and its toxins like a radioactive biological weapon. He pioneered extreme mold avoidance on this basis and it is helpful to think about toxins in this way.

 

Some people like Erik are Acute Responders, which means they have extreme symptoms like projectile vomiting or passing out in the presence of certain spores or toxins. Stachybotrys, which is the most toxic of the HERTSMI spores, can make people lose consciousness. For me, I get dizzy and vertigo with a headache and all-body swelling. But I don’t pass out.
Acute Responders develop MCS– multiple chemical sensitivity– in conjunction with mold illness. (Everyone has the potential of developing MCS with mold illness, but acute responders get it the worst.) They may be unable to use solutions from The Toolkit like ozone, quats or alkaline cleaners. They have to be more strict at mold avoidance because they have more disabling  symptoms and can use fewer tools to help them. They may need to use only organic, natural fabrics, avoid plastics or polar fleece or filter their water before they shower or do laundry.

The Toolkit

There is a toolkit of products and strategies that we use to remove spores and toxins from our belongings. Before getting started, let’s remember some basics.

 

Colonies make spores. Spores make toxins. Toxins suck. Spores are willing to move along peacably, but if you attack them, they will make toxins that are a thousand times harder to remove than the spore itself. They are like skunks. Don’t piss them off.

 

Also remember that spores release toxins within their own natural cycles, not just when you piss them off. They release them when barometric pressure drops, when a storm rolls in and generally more in and around the month of November. I don’t know why.

 

There is a vast variety of spores and toxins. Some are completely benign and some will devastate you. Toxins vary in stickiness, toxicity, cross-contamination-ability and speed of denaturing.

 

Stickiness--Some toxins are so sticky, they just won’t come off your stuff. You may have to wash 5 times to remove one exposure, for example. Moldies often give up and get new stuff.

 

Toxicity–Some molds are non-toxic. But Stachybotrys is insanely toxic, for example. It’s like weaponized mold-toxin. People have varying reactions to it ranging from malaise to weeks of bleeding lungs, nausea, vertigo, psychosis. One woman I know will literally pass out in the presence of a single Stachy spore. The toxin it makes is called Trichothecenes. It is not to be trifled with.

 

Cross-contamination-ability– Cross-contamination refers to the ability of a toxin to jump from item to item. If an item touches a second item and that touches a third item and so on.  Old fashioned molds, even the 5 HERTSMI molds, are relatively easy to contain. The newer super toxins are crazy-dangerous. The primary item can contaminate something with 10 degrees of separation, (a guesstimate.) They have somehow mutated to gain the ability to jump the space-time continuum. It is said that they travel like radiation. One item can contaminate a whole house in minutes and take years to denature.

 

Speed of denaturing– All toxins will denature eventually. Some take hours, some take years. I think there are some that may take decades, but only Erik Johnson would know. If something is exposed to the air and heat (think metal storage shed in the desert) and/or direct sunlight, it will denature more quickly. Conversely, if it is wrapped tightly in plastic and kept in a damp basement, it won’t. Toxins also denature from driving over mountains! I don’t understand why, exactly, but driving your car up and down in altitude helps to clean the car! I can feel it on the downhill, my body feels the toxins and then the car feels better.

 

The Toolkit- For removing spores and toxins from the environment (not from the body)

 

An old-fashioned lint roller– One of my mentors, Karen Dean, gave me this ingenious and simple solution to keeping spores down in my Scamp. The Scamp is a mini trailer that has cushions and fuzzy walls and I was living without electricity in a wilderness area. I didn’t want to get a Hepa Vacuum because it required electricity and seemed too ineffective anyway. A lint roller was perfect! I roll all the walls and ceilings and cushions when it feels like it needs it. You can use it on your car seats in between vacuuming.

 

Quats– quarternary ammonium compounds– These are cleaners that have a molecular structure that attaches to spores. Some, like Windex and Fantastic, can be harsh and stinky. The two I use are Simple Green and Downy Free and Gentle. You can clean almost anything with these two. They get rid of spores, but not toxins.

 

Hepa vacuums and air filters— These should only be used to keep a clean space cleaner. They will not make a contaminated space clean. They will just make the hepa contaminated. They round up spores, but not toxins. But they always distribute some spores in the exhaust. Never use an old or contaminated vaccuum in a new, clean space. (Done that.) If possible, have your remediators buy long hoses and keep the machines outside when vaccuuming. If using industrial car vaccuums at car washes, become aware of where the exhaust shoots out and stay away from it.

 

Ozone– Not everyone can use ozone. There are some people who react to it so badly, that it becomes another problem, not a solution. But for those of us who can tolerate it, it is a godsend. You do not want to trifle with a small machine, however. Karen Dean cautions against using small machines for short periods of time. Your process will piss off the spores and they will create intense toxins. The ozone needs to be left on in high enough concentration for a long enough time to completely denature the toxins before you call it finished. Otherwise you can make a space worse and possibly unlivable. As an example, I would do my car overnight for 8 hours with a 20,000 cfm ozone unit. A 200 square foot room might require two ozone units for four days.  Caveat: Ozone is dangerous. It will annihilate any living thing. Insects, house plants, the entire microbiome of a place. It will annihilate you too, if you breathe it. So don’t. You stay away and let a space air out for a good long while before you reinhabit it. (Several hours for a car, a couple days for a room.) Also; ozone degrades rubber and messes with electronics. You can ozone a car about a half a dozen times before you start having electrical weirdness. Learn how to clean your grids. Each machine has ozone-producing grid-like plates inside them. They turn black and stop functioning optimally. You can extend their lives by wiping them off regularly with cotton balls soaked with white vinegar or isopropyl alcohol.

 

Altitude– Traveling up and down hills changes the barometric pressure and can make toxins “pop,” which means they release and denature all at once. Just driving for a while can make a vehicle feel better, but driving up to a clean location will make it feel MUCH better. Altitude also has an impact on Erythropoietin, which can lower your C4A (an inflammatory marker.) Erik talks more about this in his book Erik On Avoidance. Definitely read it.

 

EM-1– This is sold as a “soil conditioner” but it appears to be an aggressive soil-based bacteria that has it out for molds. It attacks mold and the mold flips out. It is incredibly important that you basically sterilize anything you use it on before you use it, because it can backfire if you don’t. You boil any fabric before you apply EM-1 and you ozone any space before you spray it indoors. Many have gotten lucky (I did) and sprayed it indoors with no adverse consequences. But it is very risky. It is unknown what is exactly happening when it “goes bad” but the war of the microbiome can make a space uninhabitable if this bacteria is applied in the presence of the wrong spores. But used correctly, this product will clean up both spores and toxins, even the worst ones.

 

A fine mist on a computer that is then left out in the sun can decontaminate a mild contamination.Visit Sara Tamames website to learn more about all the ways this product can be useful. Sara Tamames Boiling Water Protocol

 

Vulpex— This is an expensive, non-toxic, alkaline soap made in Britain that is used by museum and archival restorers. It is what is used to wash America’s Star Spangled Banner. It is non-toxic enough that it doesn’t harm vegetation, but it stinks and it is also difficult to obtain. It is not appropriate for people struggling with MCS– multiple chemical sensitivity. It is above 11 on the acid-alkaline scale, meaning very alkaline/base. It works by breaking the acidic bond that mycotoxins use to adhere to any material. (Bleach, ph 12 and Ammonia, ph 11, also have this potential, but these two cleaning agents really piss off spores, often causing them to release more toxins, which Vulpex doesn’t do.)  It is so alkaline that Vulpex is categorized as a “caustic degreaser.” That means it can NOT touch raw steel or other metals. If it does, gasses that can kill you will get released. It can not be put down the drain, therefore. Or into your septic tank. But if you soak a contaminated item of clothing in it overnight and then wash the item the next day, it can feel clean. It works to remove most, but not all, toxins. It seems to work to remove regular mycotoxins, but not supertoxins. You can make a tub full of the solution with about a ½ cup to 10 gallons of water. You can reuse it over and over because the solution doesn’t “contain” mycotoxins, it denatures them (which essentially means it dismantles them into their molecular components.) It also has the bonus of being both water soluable and alcohol soluable, so you can use the alcohol mixture to clean toxins off (painted) metal and glass (like your iphone or TV.)

 

Sunlight– The sun won’t kill spores, but it will denature toxins. Spores can withstand up to 500F and are viable in space. Only the torch annihilates spores. But the sun will denature toxins. Rig up a southern facing clothes line and leave items on it til they are clean. That sometimes can take weeks or months and multiple washes. You can also leave your car baking on a hot day in the sun to denature toxins and allow chemicals to outgas. It might degrade fabrics, but who gives a shit if you can’t use it anyway?

 

The Torch– The torch was invented by Karen Dean. It is basically a flame thrower attached to a 5 gallon LPG canister. Karen cleans her house with this. 🙂 If spores are torched, they don’t have time to produce toxins. She built a metal and concrete house that can be torched. It is, of course, not possible to torch something clean that will catch fire or melt. So use your common sense. After extensive research, Karen relies on the torch to kill spores, but uses ozone to decontaminate toxins. The torch is not effective enough at denaturing toxins because it needs to be held in place for too long in order to work.

 

Karen sometimes torches the ground outside if washing something covers the ground in her outdoor living area with spores. Spraying EM-1 can also help this, but will result in a toxic cloud for a while afterwards, while the torch just annhilates the spores before they can emit toxins.

 

Washer and Dryer– If you are lucky enough to have your own washer and dryer that are not contaminated and are not shared with others, you can use these for removing spores and toxins from your clothes and bedding. Guard them fiercely. Do NOT share them, not even with your family. Make sure your clothes washer is an upright version, not a front-loader, as those get moldy. Clean your washer regularly with Smelly Washer Cleaner and make sure it is well-ventilated and stays well below 50% humidity levels. If your washer drains to a grey water system, be aware that that area will contain spores and toxins. Make sure it is away from your living/sleeping space and gets plenty of sunshine.

 

Using a dryer is an effective way to get spores to release themselves from your clothes. That is IF the dryer is clean. It can also be an effective way to inoculate your clothes and bedding with spores and toxins if it is not clean. Avoid laundromats.

 

Planning Your Mold Sabbatical

First things first. What is a mold sabbatical?

It is a time dedicated exclusively to recovering your health by carefully controlling your environmental microbiome. The nature of this illness is an over activation of an immune response. The only real remedy is to allow it to calm down on its own by being away from the triggers. How do you stop a swirling pool of water? You don’t swirl it the other way, you allow it to stop. Sure, there are things you can do to support your immune system’s healing along the way. But the main factor by far is getting away from the mold, mycotoxins and chemicals that are making your system go haywire. This is impossible to do in the same environment that made you sick. Moving to a different setting with different mold and mycotoxins might give you a short break until your system gets sensitized to those. There are lots of half-measures you can do to try to support your functioning if you are unable to move or leave your family. But this blog is about the fastest, safest bet for kicking this insane illness and getting back to health.

You have to get away from human civilization. Why? Because the problem is actually us, not the mold. Mold has mutated over the last 40 years in response to the chemicals humans are proliferating, particularly the fungicides in house paint and agriculture.  It’s doing what it is evolutionarily designed to do: trying to clean up and decompose things that are not natural. These new, mutated molds are producing chemical by-products, mycotoxins, that are novel and neurotoxic to about a quarter of our human population. When you go to the wilderness, you are going back in time to when mold was relatively benign. Most outdoor molds are not problematic for people with CIRS (although there are exceptions.)

When to go

The ideal time to start a mold sabbatical is probably March in North America (or just as winter is ending in the Southern hemisphere.) Erik Johnson dubbed November to February as “Suicide Season” because of the extra challenges of trying to stay warm, clean and dry all at the same time when you are trying to avoid mold. During November to February, you often have to choose 2 out of 3. Sometimes you only get one.

November to February is a time when you simply try to not get worse. If you make any progress, it’s a bonus.

Obviously, people are getting diagnosed with CIRS at all times of the year. In my case, I was diagnosed in April. I spent the whole summer trying to fix my house, hoping I would be able to stay. It didn’t work and by mid-October in Maine, it was clear I needed to go somewhere where I could still live outside. I don’t recommend starting your mold sabbatical right before suicide season. Stay where you are and just do your best. Or you go somewhere warm.

Where to go

People say you can’t heal from mold illness east of the Mississippi River. I believe that’s true. The east coast is too densely populated, too full of chemicals and too moldy for a person’s system to calm down. Here’s my advice;

Take a look at a cellular service coverage map and find the blank spots. It’s either a wilderness or very sparsely populated. They are getting smaller every year. Find the place where there is no cell coverage nearest to you and go there first. The more far flung, the better. Look for “end of the road” communities. That means that it’s not on the way to anywhere, it’s at the end of a long road. Look for campgrounds that don’t offer electricity at first. Then explore boondocking, which means camping in places where you are off on your own with no electricity or services. There are lots of National Park Service and Forest Service roads that are designated as OK for boondockers. You need to go to the Ranger Station to find out where they are.

While you are there, pick a Ranger’s mind about the 450 Park Service locations around the United States. Ask specifically about wilderness areas. Juxtapose maps of wilderness areas with cell coverage maps and then try to find hot springs in the area. They are all over the western states. If you are lucky, you will meet “through hikers” who are hiking either the Continental Divide Trail or the Pacific Crest Trail. You’ll see how happy these people are with an ultra-simple life and you will feel lucky about all that you have instead of all that you have lost. Plus they know where all the secret hot springs are. 😉

You will notice that there are a LOT of RVs on the road and lots of RV parks. RVs can be notoriously moldy because they aren’t designed to accomodate condensation issues well. The danger of staying at places that offer electricity is that you might be packed right in next to moldy RVs. No bueno. RV parks also often have vented septic ports at each site, which can be problematic. Occassionally you can find RV parks that are on city sewer systems. Those are better because it takes sewage “away.” Particularly avoid RV “dump stations” as some super-toxins travel in sewage. There are some RVs that aren’t moldy. Interestingly, it seems to be the boondockers.

Hot springs are good destinations.  Often the water is alkaline or contains minerals that help restore your health. They have unlimited hot water, possibly saving you fuel and helping with your laundry. When it is scary and problematic to lie down to relax (unless you wash yourself and every stitch of fabric) hot springs offer a place where you can literally float and relax completely.  As a bonus, interesting people find them and you have an opportunity to socialize in a setting where everyone has washed their spores off. Lastly, they help you feel lucky for a sensual, healing experience in an amazing setting when the rest of your life feels like it’s in hell’s handbasket. Getting into a hot springs pool feels like getting a hug. And boy, do we need a few hugs a day.

Picking a car

Let’s talk logistics. You need a vehicle. If you are escaping from a moldy situation, you might need a different vehicle. If you can tolerate ozone, ozone the shit out of your car with a high powered (20,000 cfm) unit for 8 hours overnight. Allow a day or two to air out. If you do need a new vehicle, you might not be unmasked enough to pick a great vehicle, just know that actually driving a vehicle, particularly up and down mountains, actually cleans the vehicle. It helps to denature the mycotoxins and they fade. You will need to keep a car as spore-free as possible, but the toxins can fade while driving. The point is, you don’t have to pick a perfect car and you don’t need to worry (as I did) that as soon it gets mold in it once, it’s ruined. You can usually work with it. If it has too high a density of spores, has a colony in the air conditioning/heating, or has any Stachybotrys or any super-toxins, it might well be ruined, but usually in a partially masked state, you can sense these before buying. Check with your intuition, because often your body knows before your mind does.

Ford and Nissan make small cargo vans. These are good bets because they are all steel with rubber flooring and you can wash them down easily. It’s the upholstery and carpets that get hard to clean. So a car with rubber floors is safer. After starting out with a van to camp in, I eventually learned that I prefer a pick up truck with a cap because the driving compartment got contaminated every time I went into town. Now, with a pick up, I can hose down the bed of the truck easily and sleep in there, even if the driving compartment isn’t perfect. I got a 2003 Tacoma because Toyotas are awesome and reliable, but they also have problematic AC/heating systems for the newer models. 

Newer is also safer, despite the outgassing chemicals. You can heat it up to make it outgas faster. Older cars are simply more likely to be moldy, unless it has lived its whole life in the desert. If you are looking at a car, make sure it has never gotten wet inside, has no leaks or holes in the ceiling. Some Subarus, for example, have a drain that goes along the groove where the roof rack goes. Inexplicably, this drain travels down a pipe on the exterior of the car to empty out in the rear tire wells. This drain opening can constantly get clogged with debris, in which case water would come into the interior of the car. People won’t think to tell you things like that, so ask specifically.

Attaching a tow-hitch has the advantage of allowing you to either mount a tray on the back of your car for items you don’t want inside, or later get a trailer.

If you want a place to live, I would recommend either a Casita or Scamp trailer, or better yet, setting up a custom cargo trailer to live in, with a Murphy bed, a kitchen and make-shift, no-plumbing bathroom and shower.

Starter Shopping List

3 sets of day clothes

3 sets of pajamas including hats and socks

A back up set of clothing (that you keep in a plastic bag in your car for emergencies)

Raincoat or Froggy rain suit, doubles as spore jacket.

Down coat or vest

Flipflops (for bathing), rubber clogs (for camp) and walking shoes (for town)

A main set of bedding

A backup set of bedding

A clothes box (with a plastic zip box inside for pajamas)

A bedding box

A utility box for

Cookware, dishes and cutlery

2 collapsible backpacks to carry electronics (so you can switch them out and wash them)

2 passport belts to carry wallet/phone

A wonder wash machine

A Nina spin dryer

A 400w inverter to attach to your car battery to run the spin dryer

A Berkey travel water filter

A Buddy Heater and/or a hot water bottle

Bronner’s castile soap (for laundry, bathing, dishes)

Downy Free and Gentle laundry softener (helps remove spores) (*see The Toolkit)

A full complement of plastic bags– green for day laundry, white for pajama laundry, ziplocs of all sizes for everything. You will use more of these than your environmental conscience can tolerate.

Mylar bags– plastic will sequester spores, but not toxins, which act as a gas. Mylar bags will sequester toxins too if you have something you need to keep clean in a contaminated space or something contaminated in a clean space. (Like town shoes.)

Keep in mind that spores love super fuzzy items like fleece jackets or blankets, so they are harder to get spore free with cold water. Smoother surfaces like nylon or silky type bedding are easier. Using a dryer can get your spores off, but unless you are the only one using the dryer, I can’t recommend you do that because of what else your stuff will pick up in the dryer. One trick is to leave your super-fuzzy items at camp and get a smoother jacket to wear into stores or town. But use Downy Free and Gentle in each wash/rinse to attract the spores and move them along.

Random tip* if you are buying multiples of anything (pants, boxes, hats, etc) get different colors. It helps to keep things straight that are clean or need to be cleaned.