Open Letter to Merlin Sheldrake

Dear Merlin Sheldrake, 

At the opening of the chapter on Radical Mycology in your new book Entangled Life: How Fungi Make Our Worlds, Change Our Minds & Shape our Futures, your naked body is immersed in a mound of decomposing wood chips. I yelped out loud when I read that sentence. Immersed in wood chips on purpose!! I personally know two dozen people who would choose swimming with hungry sharks over a wood chip bath. Oh, how I want to introduce you to Julie Reymeyer, author of Through the Shadowlands; A Science Writer’s Odyssey into an illness that Science Doesn’t Understand. Julie has a wood chip story for you to beat the band.

Your keen and voraciously curious young mind! Your book is an absolute delight. What a confluence of inspiration, good fortune and spectacular parenting with a top-notch education. While you can tell I am squarely in your fan club, I am writing to tell you why your book disappointed me, just a little. 

No, I am not of the 4% of curmudgeons that give any perfect item a bad review. While your mind seems to effortlessly perceive from the perspective of fungi, and, much like Paul Staments and the Radical Mycologists, you have somehow become a human translator between two worlds, there appears to be a giant, gaping hole in your awareness of fungi. 

Perhaps I am mistaken and you are all quite aware of what I am referring to, but not compelled (yet?) to write about it for various reasons. There are a great many brilliant minds who understand, in depth, the biochemistry of the effect that fungus and mycotoxins have on human health and will therefore have on the future of human civilization. You see, there are a great many of us who can feel fungus, long before we perceive it with other senses. We are fungal X-men. 

Oh what I would give to watch you have a conversation with Dr. Daniel Cagua-Koo and see Paul Stamets sit down with Dr Ritchie Shoemaker. I want to watch you discuss Candida Auris. What would it take to have these two fungal societies un-silo their knowledge and merge like mycelium? Each of these fungal societies has its own conferences, its stars and pariahs, visionaries and egos. If I were to design a conference to introduce the Radical Mycologists to the X-men, I would invite you and Paul Stamets and Peter McCoy and maybe half of the people listed in your Acknowledgements section.

On the X-men side, Oh the choices! So many brilliant minds! Dr. Mary Ackerley, Dr Keith Berndtson, Dr Jill Carnahan, Dr Neil Nathan, Dr Peg diTulio, Dr Mark Su and the rest of the ISEAI network as medical experts. But then Star X-men and citizen scientists Julie Reymeyer, Jen Brea, Sarah Riley-Mattson, Brian Rosner, Brian Welsh, Corinne Segura, Lisa Petrison and, of course, the grand poobah himself, Erik Johnson. Erik would need to be on stage by himself, to finally have his moment and present his vision to posterity. He is feeling a bit gruff after 30 years of being right and feeling ignored. And yet he has personally saved countless lives, including my own. 

Surely you are experiencing accolades along with resistance to your challenges to the status quo scientific understanding. Some scientists get so grumpy when the status quo gets upended, as it always does, eventually. It reveals their egoic lens. But the paradigm one employs matters when one is trying to not die. Conventional medical paradigms fail to help people who are x-men, and then blame it on them. 

There is nothing that makes you interested in human health quite as much as being a parent. There is a moment in every parent’s life when they become aware of the terror of mortality of this creature they have just created and love more than anything they thought was possible. After becoming a parent, it is becoming sick yourself (or loving someone who is sick) that makes one take a keen interest in how one might manage to stay alive (and preferably without much pain.) So this paradigm shift that is underway is interesting to those of us who are already in the next paradigm. May you be blessed someday by loving a mold avoider. May the world be so blessed.

Merlin, I think you would very much enjoy this conversation between two American doctors who understand this paradigm shift— they discuss how soil health translates to human health in a very direct dance of interrupted cell signaling. It’s fascinating and hopeful.

In a way, it would sound absurd to have named each individual woodchip in your fermenting tub, and then lamented its demise once its form had succumbed to the fungi. We are all just melting back into the whole again. But make no mistake– from the point of view of the individual, it is quite clear that the fungi would like to decompose our bodies right now. Given the ubiquity of fungi, you can understand how this might trigger emotions in those who can feel that signal.

Our bodies, these teeming mash-ups of collaborating and competing cells from various DNA lineages, with consciousness that conflates the conceptual sense of “self” with “reality.” (Oh how I wish Terence McKenna were still around to be on a panel at my dream conference.) 

Because, yes, the fungi-world view on both sides of the conference involves a reckoning at the deepest levels of what it means to be human. Why is it that our awareness is the only thing that doesn’t change, while everything else is constantly seething and popping and teeming in transformation, like a ferment? What is the nature of knowing? Of Being?  How can mushrooms simultaneously try to kill us and guide us to our own innate fearlessness of death? What a fascination. 

Somehow this body can feel the biome. Each page of your book rang bells. You beautifully articulated what I already know in my bones. My copy of your book is very dog-earred and underlined. Your book will change the scientific paradigm and bring it into a better alignment with what is actually going on.

Right now there is an infection in my environment that is forcing me to live in my vehicle again. It is requiring that I update my paradigm to try to understand how I can co-habit with this new outdoor organism without pain, insomnia and rampant inflammation. 

One of the strategies, besides mold-avoidance and medical treatment, is brain retraining. This is designed to dismantle the body-mind’s pattern recognition system, which, sort of like morphic resonance, favors responses to stimuli that it “remembers” having. There’s a conditioning that occurs that can sometimes be dismantled, thereby interrupting what would lead to an experience that is similar to a previous experience. (It doesn’t always work, and if it does, it may interrupt deepening conditioning without removing the biological sensitivity.) Is conditioning the “self?” By dismantling conditioning, are we dismantling “self?” Your line of inquiry about “what is an individual, really?” is ultimately the very same question. Somehow dissolving the “concept” of self can actually facilitate healing.

So while I was crackling with excitement about your debut oeuvre on fungi and plants– that it had such breadth and vision and wisdom– I hold out hope that you get curious at some point about the huge body of next-paradigm scientific understanding about the impact of the Fungal Kingdom on the Animal Kingdom. Maybe next book? I can’t wait to follow your mind’s unfolding. 

Kindest Regards,

Holly

Ego Is A Vampire

I have no interest in defending the identity of the chronically ill.

Illness has a way of strengthening identity because anything that threatens your existence tends to make your ego do push ups. But strengthening the “I’m sick” identity will not facilitate healing.

Here is the paradox of healing from chronic illness: You have to accept what is true for your body before you can change it.

Acceptance starts with learning what could possibly be creating the mayhem…but it ends with surrender.

The New Paradigm illnesses are complex to the point that they are controversial. Controversy is intrinsic in the process of paradigms changing– there needs to be a build-up of tension. In this era, there are proliferating complex, chronic illnesses that cannot adequately be explained by the previous medical paradigm. (This has always been true– the hubris of any paradigm will dismiss the unexplainable rather than question the paradigm.)

That’s why it is helpful to validate the experience of anyone who is struggling with physical dysfunction that their doctors don’t understand. It’s true. It is happening. You are correct. Get a better doctor.

This validation allows the ego to stop fighting to be heard. That fight is a huge energy leak for energy that could be used to heal. (I notice now that will fight harder to defend someone else against ignorance than I will fight for myself.) What chronically ill people need is simply a safe space where they are believed. Then the next stage of healing can commence.

Yes, you have devastating symptoms here and here and here. Why? What could possibly have caused these sensations to arise in this physical form? Looking to other people who have figured it out and gotten better, it is likely to have something to do with your environment on some level. That is never not true.

Look at your food, what insects have bitten you, look at the quality of your indoor air, the quality of the outdoor air in your location, the quality of water you drink. It’s simple, in a way. 1) You remove what shouldn’t be there and 2) You add what should have been there. There are nearly 8 Billion humans on the planet. Live how ancestral humans lived, because they were successful.

From a certain point of view, this entire planet is one organism. Nothing is “outside” the organism.

None of this is personal.

Your mind is distinct from your ego. We know this because of how many humans have had their egos burn up from suffering….and still the mind functions.

Spiritual teacher Jac O’Keeffe talks about the neurological difference between the “default mode network” (the wiring that self-references all your sensations and stories) and the “task-oriented network,” which is separate neurological wiring that allows your organism to solve survival problems: get food, go pee, find somewhere to sleep.

It turns out, you don’t actually need your ego to go pee. There doesn’t need to be a whole story or a defended identity to simply get up and go to the bathroom. You may notice that your body does this often when your mind is involved with other things.

So it is with healing from chronic illness. There is always some new therapy or supplement to try. There’s healthy food to prepare. There’s robbing Peter to pay Paul. There is always a long to-do list. And there’s MORE energy to do it when your ego is not constantly protecting and defending itself. Your ego will tell you that it is essential to your survival, that you would die if you surrender. But it is only protecting itself, not your organism. It’s actually a drag on the system.

This is why I have no interest in defending the identity of the chronically ill– mine or others.

Eckhart Tolle tells a story of the day the Dalai Lama learned the phrase “low self-esteem.” He was in a room full of Westerners and went from one person to the next…”Do you have this?” yes, yes, yes…each person affirmed that they suffered from this mental state that the Dalai Lama had never heard of. He was astounded.

The esoteric practices of Eastern spiritual traditions like Buddhism often focus on an undermining of the ego on the path of awakening. But it is understood that the psychological conditioned structure must be stable before there is an attempt to undermine it. Otherwise, there can be mental health challenges. This can be a big challenge for Westerners. Our culture deifies the world of form and defines ego as the entire identity. Psyche.

So there is value in working with — and stabilizing — your psychological conditioned structures. This is why it is important to BELIEVE people when they are reporting sensations, even if you can’t measure them yet.

But it is a stepping stone to the next part of healing, which is an invitation to surrender. Surrender doesn’t mean giving up– not at all. Surrender is a careful, subtle observation of your own consciousness to look for flinching, clenching and fighting— and then releasing it. This may be the scariest thing you have ever done.

But the rewards are phenomenal.

Surrender happened when I lost the fear of dying because living was so incredibly difficult. OK, kill me or cure me. That became my mantra.

For me, leaving my son was the biggest splinter in my mind that tortured me. He was almost 12 when I left to escape mold. He stayed behind with his dad and has had a great and healthy life. He was internalizing my illness, getting depressed, and it genuinely made his life better for me to leave him. That tortured me. I tried to go back twice and got sick. I had to find a way to release it.

Surrender allowed my organism to stop spending so much energy on my frantic, fighting ego and become transparent to the wisdom and intelligence of something deeper. I have allowed THAT to take the wheel and drive “my life.” You can see it in the eyes of other people, if they have come to know the same thing.

The pain and malfunction certainly has not stopped overnight. (Often, healing involves more than restoration of function in the physical body.) But solutions come. Breakthroughs come. Coincidences and serendipity increase. My son and I have a wonderful long-distance relationship now. He’s 16. He came to visit me in April. Releasing my emotional holding around losing time with him has opened space for what is available now with him.

Every single identity that my ego grips onto has become an opportunity to dissolve it. What’s left is joy. What’s left when your ego goes quiet? The healing power of unencumbered life force that was always flowing through. I’m happy almost all the time now. I’m feeling better and better. You know what’s crazy? I feel joy even when my body feels crappy and things go wrong.

So I’m not going to defend my identity or your identity or “our identity” as sick people. But I believe you. I’m going to create a safe space for you to explore what is true right now– it hurts here, this isn’t working– and use it as a spiritual opportunity to look inward. Watch what happens inside your field of awareness. Watch very carefully to see if there are energy leaks. Ego is vampiric in its voracious demand of your lifeforce.

Notice what is able to witness your ego. What is that? Who are you really?

Fire your ego and surrender. ❤

Celebrating a fallen MCS queen

Environmental illness can be challenging in a way that is hard for others to relate to. Especially when one becomes reactive to the ubiquitous chemicals in modern life, there is a terrifying loss of safe spaces, over and over. This is traumatizing. When people are ignorant enough to discredit your experience as “psychosomatic,” a second trauma is experienced.

For example, when you Google “MCS” or “Multiple Chemical Sensitivity”, Google will suggest other questions in the “People Also Ask…” section, such as “Is MCS real?” and “Is MCS a mental illness?”

Please. I am having none of this.

Today I feel like commemorating the life of my friend Candace Covington, whose 44th birthday would have been this week. An illness started her chemical sensitivity when she was just in her 20s. Because the illness is so multi-factorial and complex, there is a lot of misunderstanding. It is way too easily dismissed as psychosomatic (especially in women) by people who don’t understand the physiology. So here’s a little primer on multiple chemical sensitivity.

  • Swelling
  • Itching
  • Rashes
  • Inflammation
  • Vomiting
  • Headaches
  • Chronic pain
  • Flushing 
  • Diarrhea
  • Constipation
  • Fast heart beat
  • Low blood pressure
  • Fatigue
  • Fainting
  • Sweats
  • Abdominal pain
  • An illness, injury or massive mold exposure can kick this off. (Mold kicked it off in my body.) It is extremely difficult to “turn off,” thereby requiring a lifestyle of avoidance of the substances that cause these reactions. When I say “requiring,” I mean it is totally mandatory and non-negotiable if one wants to stay alive and feel ok.
  • Where can you go to avoid 80,000 chemicals? The wilderness is literally the only solution to truly, fully recover. (It DOES work. You heal. Then you manage the reactivity.) Otherwise there are lots of meds and stopgaps. You have to go back in time to the dwindling places that have not yet been polluted. (The wildfires in the west are being fought with flame retardants, one of the worst possible chemicals for chemically and mold-sensitive people, thereby further limiting our options.)
  • MCS absolutely has a genetic/epigenetic underpinning, being informed in real time by a person’s genetic ability to clear toxins through various pathways (sulfation, methylation, glucaronidation) using genes such as MTHFR, CYP450, SOD, GST, PON and NOS. “Metabolic parameters indicating accelerated lipid oxidation, increased nitric oxide production and glutathione depletion in combination with increased plasma inflammatory cytokines should be considered in biological definition and diagnosis of MCS.”
  • We are just now getting to an era of being able to measure real-time epigenetic responses to environment with Dr Shoemaker’s GENIE test. It’s not perfect but it’s a breakthrough. This isn’t looking at your predispositions, it’s revealing which genes are activated and expressing in that moment.
  • And there’s your sixth chromosome, which holds a whole bunch of human leukocyte antigen factors that govern your innate and adaptive immune responses.
  • Your Innate (old, non specific) and Adaptive (new, specific) immune systems can slip away from each other and stop communicating well. Th1 dominant and your innate immune system flares and tends towards autoimmunity. Th2 dominant and your allergies go haywire. Didn’t know that could happen? It does. How do you fix that?
  • If someone has a history of trauma on top of these genetic vulnerabilities, (and seriously, who doesn’t?) the autonomic nervous system can become permanently altered. This means the vagus nerve creates disrupted cell signaling that can impair the parasympathetic function, making it almost impossible to calm down or sleep deeply. Ever. Yes, it’s fucking psychological when you can’t find a safe place anywhere. But it is also physiological.
  • “Approximately 47 percent of the U.S. population, 150 million Americans, suffered from at least one chronic disease, as of 2014.[3] Almost 30 million Americans are living with five or more chronic diseases.[4]” Let’s look at the fastest growing one:
  • After 30+ years of Alzheimer’s research, Dr. Dale Bredesen has concluded that no less than 50% of people (probably much more– my opinion) who struggle with impaired cognition are dealing with a toxic component (5 elements: infections, organic and inorganic chemicals, heavy metals, mold toxins and viruses.) Yes, it is reversible, but you need to understand it before you can address it.
  • The Alzheimer’s Association is aware of the scope of the problem (Check out page 11 of this report.) But the enormous sums that have been spent on 400 failed drug trials tell me they still don’t understand the etiology. Hmm, and what’s going on at the FDA with Biogen’s drug?
  • If you are getting my drift, there were over 47 million people worldwide in 2015 suffering from dementia and that is projected to rise to 76 million in 2030 and 145 million in 2050. (pg.13) Half of those people have a toxic component (even though 9 out of 10 are breathing polluted air?) And who thinks MCS is psychosomatic? Who’s crazy?

    This is a public service announcement in honor of Candace’s life because she did not get the help and understanding that she could have had because her illness is a “new paradigm” illness. It is an illness of the future (which we are already in, but which the current medical paradigm has not caught up to.)

    Candace was living on the edge of survival, sleeping in her truck, for more than 2 decades. Some massive contaminations removed from her the only safe spaces that she had fought so hard to keep. And she gave up. I don’t blame her one bit. I am sincerely happy that she is free.

    She is worth honoring because she let this incredibly absurd, dystopian situation soften her. She became kinder, more generous. She worked hard and created her own business, the Creosote Bush Salve company. She lived in Texas and got no public assistance. She felt guilty for being sick.

    I don’t feel guilty.

    I feel determined. (Can you tell?) I feel like calling this what it is. If you are sick with a complex chronic illness, I see you. You need a clean, safe place to heal and become educated on how this all came to pass. You deserve dignity and safety and truth. You can use this experience to heal and grow.

    Rachel Carson was right.

    Happy Birthday Candace. Enjoy those wings, darlin! ❤

The Big Picture

First, it is important to remember that none of this is personal. Although it feels personal because it is affecting you and your family, a huge process is unfolding that no one person has control over. The trajectory of human history is still only in its adolescence, in many ways. When we can’t perceive the whole picture, we must learn the hard way. So that’s what’s happening. We are feeling the effects of the unanticipated impacts of modern civilization.

“Better Living Through Chemistry” turns out to have been profoundly naive.

The current systems of human civilization are devastating the macro and micro ecosystems on the planet and it’s not slowing down. The moment for action to avoid crisis is happening now. We are at the tipping point. We are watching it pass.

The status quo in America is that you are profitable to someone when you are sick. There are structures in place that profit from introducing the 80,000 chemicals into our environment and then there are structures in place that profit from your engagement in our for-profit medical system, whether or not you get better.

The big picture is that you will need to become mentally aligned to a New Paradigm before real healing is available to you. Humans die from “mental sclerosis” all the time– that’s an inability to update our thinking in time to grasp the nature of the problem and therefore the solutions. Are 400 failures of Alzheimers drug trials enough to open your mind?

  1. A new medical paradigm is emerging. Perhaps you have had personal experiences with conventional medicine failing to help you or someone you love, while “integrative medicine” helped. Perhaps this concept of a single drug fixing your body makes no sense to you since it is clear that how you eat literally creates your body. It is clear to you that your body is not separate from the web of life that contains it, it is a reflection of it. Functional Medicine is systems analysis of the etiology of symptoms– not just treating symptoms, but discovering the root causes. The root causes of cancer are not likely to be a lack of chemotherapy.

“Your fish is sick.
Germ theory: isolate the fish.
Terrain theory: clean the tank.”

  1. Even greater than the shift in medical paradigm is the shift in scientific paradigm. The current power structures on the planet are still operating from an outdated conceptual framework that says that the planet can indefinitely absorb and dilute the metabolites of profit and comfort. It is based on a misunderstanding that we are separate from nature and that microbes are bad. Medical Science is now transcending this misunderstanding.

    Almost 60 years ago, biologist Rachel Carson published the NY Times best seller called Silent Spring, which focused on the impact that DDT and other biocides have on the environment. She was attacked by the chemical industry “as an alarmist and was accused of trying to reverse scientific progress.” Rachel Carson was right. However, truth is always hard to see when one’s livelihood depends on blindness.
  2. Even greater than the shift in scientific paradigm is the shift in human consciousness. After several millennia of human progress, the planet manifested a “second brain” with the internet– just in time for tens of millions of people to lose their memory.  The internet elucidates and amplifies the human mind with its search for truth, but also all its hubris and ignorance.

    The momentum of “Earth’s mental crescendo” is still building, but offers each of us the increased contrast within the human experience of the activities of the mind versus the present moment awareness within which all of those activities arise. The silent now emerges as the contrast to the mind. The “post-crescendo” consciousness is quite aware of this difference and gravitates toward the sanity of the present moment, and therefore solutions that are in alignment, not in conflict, with natural systems.

Moments of existential crisis are basically growth spurts. When your existence and/or your paradigm is challenged, you are forced to develop tools you never needed before. When you develop those tools, you become an asset to the whole system. It’s as though the whole system is challenging you to come into alignment for its own benefit.

Having this “Big Picture Perspective” can be helpful when the path of healing becomes challenging.

The Gift of Chronic Illness

Imagine a happily married person who comes home one day to find that their beloved spouse has disappeared, emptied their house and swept all the bank accounts clean without even saying goodbye. Imagine that moment of sickening realization, when everything they had thought was true now reveals itself to have been false. The entire paradigm can shatter in a way that leaves a person untethered from their previous assumptions of sanity.

This is how chronically ill people feel about the conventional medical system.

This “untethering” is crucial to discovering the gift that chronic illness has to offer. On a personal level, it offers redemption through dismantling ego. Societally, it is the doorway to the next paradigm. We, the canaries who become phoenixes, become tour guides to the future, with all the existential challenges and personalized medicine that awaits.

The unsettling disorientation of the shattered life creates a familiarity with the state of “we might never know.” And of course, there are many trillions of dots that have never been, will never be, connected by the human mind. There is a seething, careening, intelligent design of life roiling in the evolutionary process that we glimpse and try to measure. Feeling the truth of this allows us to take a stance of humility, even to surrender.

There are a great many practical benefits to getting this into perspective. It allows you to not take any of this personally, to not be angry with your doctors or with society for “failing you,” to make contact with the peace inside of you that is unaffected by what happens to you.

Paradoxically, this feeling of floating away from the familiar with no rope without fighting it is the space into which solutions can arise. It turns out there was this intelligence all along, out of which the human mind arises. The hubris of the human mind and the current scientific paradigm appears within it like a toddler’s tantrum in an enormous expanse of compassionate consciousness.

It’s much more of a process of releasing a misunderstanding than discovering facts that will heal you. One of the misunderstandings that it is time to release is that we are separate, that this whole caboodle is anything other than one single, closed-system organism of Earth. Wholesale annihilation of microbes or wildlife, for example, will reverberate within the closed-system with predictable consequences. As Eckhart Tolle says, “your understanding is not a powerful contribution to the truth.” By this, he means that the nature of reality remains unchanged whether or not you perceive it. In other words, you feel separate? You’re still not.

How does this apply to complex chronic illness? There is a shift underway both in science and in consciousness …and chronically ill people are sort of driving it. There will be more and more of us, eventually becoming the majority. Releasing psychological and paradigmatic “holdings” could be a path to a deeper healing for society and for individuals than we may have ever had access to, had we stayed well.

As we know, rock solid answers are currently hard to come by in this field. It appears that the very apparatus of our scientific method might blind itself to the possibility that we are still in the dark ages. Still, solutions DO come! Yes, there are controversies as to whether one can become “colonized” by mold, or whether MARCoNS is still important to fight or how big a role actinomycetes play in “mold” illness. The brash and unrepentant front edge of Environmental Medical science (Hello Dr Shoemaker, Dr Klinghardt, Dr Nathan and all of ISEAI) are the ones who are ACTUALLY helping people, in part because they are untethering themselves from the ineffectual previous paradigm.

“We can’t solve problems by using the same kind of thinking we used when we created them.”

Albert Einstein

It’s really not very surprising to learn that the paradigm that needed to make profit with antibiotics and pesticides, chemicals and processed food, is now failing to even understand the nature of the problem when it comes to the Alzheimer’s/Autism/Cancer/CVD epidemics. EVERY paradigm blusters and bloviates before it is inevitably replaced. (400 drug trial failures for Alzheimer’s? Come on, now.)

The whole of complex chronic illnesses will come into a new era of understanding, (probably after crises where the rich and powerful get sick themselves) when humanity will finally begin to grasp that it is the microbial world that is rising in response to human devastation. All of the ubiquitous microbes, the fungi, bacteria, viruses and parasites are not just mutating, but sharing information with each other to optimize current generations’ success at our undoing. This is not personal. They are not our enemies. This is the Earth’s immune system flaring in response to our activities.

It is our alignment with this reality that offers solutions. It is LACK of microbial diversity in our guts that is a major problem in human health. Intact, diverse microbial ecosystems = resilience in human health. Dead, pathogenic and compromised microbial ecosystems in bodies, soil and buildings = illness on personal, societal and global levels.

The arc of human history and of scientific inquiry DOES lean towards truth. It does this by removing what was always false. Sometimes a change in understanding will alter the rest of your life. It’s not that new information changed the nature of reality, it’s that your grasping of this information allows you drop into alignment with truth for the first time.

So may you be blessed with finding doctors who feel this, who are humble and curious and devoted to being of service. May you be blessed with having your “holdings” shattered and may the deepest intelligence of the universe find a path right through your body, burning up everything that is not who you really are.

Breakthroughs

Last month, in January 2021, five years after I got sick, I had this conversation with my dad;

Dad: “I wasn’t always sure you were going to make it, if I’m being honest.”

Me: “Yeah, I wasn’t sure either. But the fact that we are looking back on it means that I finally feel like I’ve crossed some threshold of stability. I’m not in constant survival mode anymore.”

The challenge is absolutely Herculean. Only by going through it or loving someone who is going through it can you truly understand what it means to get sick in such a way that all available housing becomes off-limits. Survival becomes a full time job until you can successfully hack the situation.

“Hacking the Situation” means you keep testing until you understand the mechanisms that are malfunctioning in your body and in your environment so you can work with them. Is it a poisoning? Contamination? Is it infection? Inflammation? Blood sugar issues? Mitochondrial dysfunction, Impaired Detoxification? All of the above?

“Testing” means actually lab testing, plus tweaking your environment, your food and your supplements, to see what changes. Most of the testing is against your will in the beginning. You get so sick that you are frantically trying not to get worse, but things keep kicking your ass. Everyone has to figure out the hard way because you can’t comprehend that it could possibly be this hard.

Environmental Illness is cruel this way: Every single person has to figure out the “fingerprint” of their unique genetic response to their unique environmental insults. There’s no single person or place to go to get all the answers you need. You have to hack the situation. It’s a hero’s journey.

This might not be true even in 5 years from now. There is now, in February 2021, one single test that can identify your epigenetic changes. This test isn’t identifying your genetic weaknesses or predispositions, this is identifying the genes that are ACTUALLY altering your metabolism, immune system and detoxification right now. It’s not foolproof, but wow, it’s impressive.

Despite the individual nature of healing, there are “themes” that have helped other people succeed, and you can adopt those themes to increase your understanding of your own problem, in order to hack it.

I’m going to write about the breakthroughs that I have had on my healing path so far to illustrate this point. Each of these may or may not work for you. (This list doesn’t include to 100 other things I tried that didn’t seem to work.) Even with 20/20 hindsight, I can see that some of these solutions had to wait for me to mature spiritually or psychoemotionally in order to get the lesson. There are windows of opportunity that open and close. The suffering and physical pain have been my teachers and I have learned to no longer judge pain as “bad” and comfort as “good.”

  • Adrenals– In many cases, the initiating illness in CIRS will be a virus, and this was true for me. I got a viral UTI (I didn’t know that was a thing.) I went on Valcyclovir and that helped. But the day the virus went from making my kidneys hurt to attacking my adrenal glands (on top of the kidneys) was the day I almost collapsed at work. This was the “Date of Onset,” December 22, 2015. I had had destabilized health since 2002, but this was the date I became bedridden.

    I figured out quickly that it was my adrenals because of the symptoms and by January 2016, I was on the Dr. Lam program. His books described my symptoms and progression to a T and their approach of diluting glutathione and other nutrients in bottles of water and sipping slowly all day was exactly what was needed. I was working with a naturopath at the time whose advice crashed me no fewer than 6 times. So this was hacking the first layer: the discernment to know who to listen to, what to work on and how gently to proceed.
    ________________________________________________________________________
  • Mold– In February 2016, I was lying in bed, miserable, wondering what the hell to do next when I listened to the podcast where Chris Kresser interviewed Dr Ritchie Shoemaker. In retrospect, this was the moment that saved my life, and I could feel that at the time. This was the moment I understood that the mechanism was poisoning. I was being poisoned by my environment and if I wanted to live, I had to find it within myself to get up and run for my life, while sick. Many people reading this blog will relate to this. The Shoemaker Protocol was a MAJOR BREAKTHROUGH. My acupuncturist made house calls and scraped me off the floor so I could begin to implement it.

    My friend Jen, who had given me shelter 6 years earlier when I got divorced, let me stay in her guest room til I figured out what to do. It was the first move in 4 years of homelessness because every subsequent environment I went to made me sick. I lost every single item I owned. Every last thing. In the imperative to out run mold, I had to give away my stuff and buy new stuff several times. I got so clear of it that now I can feel where it is. My friend from Vermont just sent me a Christmas card and I could feel the mold on the paper. I know. That’s crazy, next-level sh*t. But now that my whole life is designed to avoid mold, I am finally healing.

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  • Intracellular Bugs– Several times during my odyssey of healing, I had setbacks from getting infections that could not be identified. They went away with antibiotics, then sometimes they came roaring back. I had 6 antibiotics failures in a row in 2019. I got soooo sick, I had to figure out a whole new layer of the onion, even though I didn’t have the inclination or the money. (You get so tired of constantly panicking from this or that threat to your survival that it sort of becomes routine and you become really OK with the possibility of your own death. This is actually a wonderful freedom and helps you be fearless and find creative solutions.)

    In this case, I found out how to send my blood to Germany for T-cell testing (because intracellular bugs sabotage your ability to make measurable antibodies) and then I found the Buhner Protocol. The Buhner Protocol is a way to rely on herbal antibiotics to make your body less hospitable for stealth pathogens like the Lyme spirochete, the Babesia Parasite or other tick-borne co-infections like Bartonella and viruses. It worked for me ( I found out which 3 tick-borne bacteria I had) but I couldn’t afford it at $400 a month for just “not getting worse.” When the government send the $1200 stimulus check in spring of 2020, I spent the whole thing on creating my own tincture Apothecary. I buy dry herbs now by the pound and pop them into vodka and was able to double my dose and make progress. (Thanks Covid.)

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  • Advaita– There’s a tremendous spiritual opportunity in having new-paradigm illnesses. I found that I needed to become a student of consciousness in order to not be driven mad by my own mind. I hadn’t wanted to leave my life in Maine. My son, my house, my boyfriend, my dance group. I was being driven mental, trying to make it all un-happen. I was creating hell for myself.

    Life became painful enough that I was hungry for a solution and the pain became a gift. It made me hack my mind. I became aware of the nature of thoughts in a way that allowed me to take them less seriously. Not identifying with the drama as much, I caught a glimpse of the moment-of-choice — where I can go down that path of getting upset, or go down this path of equanimity and solutions. I can’t un-see that choice now. This is like doing the Gupta Program or DNRS. It’s an unrelenting, moment-by-moment brain retraining that dissolves the mind. A conscious refusal to engage in certain mental patterns instantly cancels a certain amount of physical pain, and the feedback loop that connects them.

    I had been a Buddhist since my adolescence, but my new high-desert environment came with a community of practitioners of “Advaita Vedanta,” which is like a bunch of super bad-ass Buddhists who have hacked Awakening. A fun group.

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  • Ayahuasca– Although the overall trajectory of the last 5 years has been one of healing, the setbacks have been numerous and constant. During one such setback, the “doing everything right all the time” approach was still not working and my feeling was, “Cure me or Kill me.” I was ready to surrender totally and completely. Just take it.

    Meanwhile, there’s always something new to try. So I signed up for an Ayahuasca ceremony. I figure this illness finally opened my mind to herbal medicine with the Buhner Protocol and I was grateful for that. Unfortunately, the ceremony was in a moldy building and I got really sick. And then I got really well.

    I had a brief journey, quite sweet, that was a narrative about the origins the illness starting while in utero. And then I was in hell, and then I threw up. After that I felt better than I had ever felt in my life — for 3 days. I have no idea what happened, but it feels like I was permanently freed of something foreign to my body. It didn’t cure me, but it was another layer gone. Afterwords, the antibiotic tinctures started working much better for some reason. Who knows why.

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  • Mast Cell Activation– Three months ago, I randomly started taking a second antihistamine. (I try one or two new things a month to jostle the system to see if anything changes. You make a commitment to both consistency and innovation.) So that was one of my efforts– I took a second antihistamine. I had been on Xyzal for 2 years for mast cell activation at Dr Ackerley’s recommendation. But I never felt that different from it. But when I added this tiny little pill, I suddenly had what seemed like a different body. I slept 8 straight hours without even waking up to pee. And every night for 2 months!! That hadn’t happened since I was a kid! I felt refreshed and awake first thing– which never happens. (Ask my bff Tina.) It was a Eureka moment and definitely qualifies for breakthrough status. Learn more about it here.

    The effect didn’t last, as they often don’t. But it was an awesome clue as to what the mechanism of dysfunction is. The feeling of internal tremor that is the sensation that will make me run screaming from a moldy building is none other than all my wee mast cells activating. It’s what makes my face flushed all the time. It’s the reaction to my bedding that makes me feel like I just drank an espresso as I lay down and try to relax. It’s the reason I have to eat a simple diet (no grains, no leftovers.)

    Mast cells are connected with the Vagus nerve and they exist where the nervous system and the immune system meet. Often in these illnesses, there is a central nervous system dysregulation that impairs the body’s ability to calm down. There is literally an inflammation of the nervous system, including the mast cells, that disables the parasympathetic action (the thing that lets you calm down or fall asleep.)

    If you have ever lost your ability to fall asleep, you have learned how hard it is to heal. Your body can’t heal without sleeping. I can’t sleep in or near a town, still. I have to drug myself to sleep. So I have to go up to the wilderness part of every week so that I can get caught up on sleep and detox. My mast cells are not activated in a very clean situation.

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Sometimes solutions have drawbacks, however. Taking antihistamines can have a deleterious effect on your brain. They are considered to be “dementogens” because they impair new neuronal growth. So… I’m constantly working on my next breakthrough. In an effort to hack this situation, I’m focusing on breakthroughs that will bio-hack the brain and be an antidote to all the anti-cholinergic supports I have in my routine.

I keep a wilderness baseline and I’m experimenting with peptides and a low-histamine diet and plasmalogens. More testing is necessary but so far something is working.

Even though this path is hard, it’s important to note that the difficulty is ultimately a gift. The process has actually eroded the mental and emotional structures that have obscured the beauty and joy in each present moment and I now have a capacity for joy and equanimity that was not available to me before. That is the point of the hero’s journey.

There are treasures at the bottom of that darkness!

Holly ❤

The Spiritual Opportunity of Being Sick

It is hard to explain. Like many difficult things in life, people can’t relate to this unless they have been through it themselves. But having your life completely fall apart could turn out to be one of the greatest things that ever happened to you.

I remember the first time I saw a pregnant friend after I had gone through my own excruciating childbirth experience. I realized then why all the mothers had said the same thing to me when I was pregnant; “You’ll be fine.” Nobody told me that I would have to dig deeper than I ever knew was possible, that it would shatter my body, that my husband would glaze over and retreat into himself and that I would have to do it on my own. “You’ll be fine” actually meant “We can’t explain this rite of passage to you. You have to live it and you probably won’t die from it.” I told my pregnant friend “It’ll be harder than you think, but you’ll get through it.”

The spiritual opportunity of becoming a parent is obvious: you start to devote your life to something other than yourself and that makes you a better human being in innumerable ways.

But illness?

Short term illness of all sorts has the temporary effect of making you appreciate everything and everyone in your life. But what about long term illness? What about illness that holds you down for years that does not seem to have a clear etiology? What about illness that borrows its framework of understanding from the future in a way that doesn’t touch your doctors in this time and place? Illness that doesn’t offer itself to the current human mind, and so swallows your former self in a tide of judgement, facile, incorrect assumptions and apathy?

Long term physical pain forces a human being to find–or at least look for– an inner place of peace. In this looking, there is sometimes an awareness that arises that peace is found in silence. Peace is found when your mind stops. When it starts again, as minds always do, it can become obvious that the machinations of the mind work like a psychic blender, whipping thoughts and physical pain into your own personal hell.

When you are sick and your physical body is malfunctioning, your mind reflects this. It is, after all, nothing more than a house of mirrors. The angry, inflamed, stuttering mayhem in your cells and muscles is of course reflected by the mirrors of your mind. It can be a challenge to be around.

But just like a parent can see through a child’s tantrum and see a sweet, gentle soul who is hungry and over-tired, it is possible to see that you are not your illness.

This is the opportunity.

Not only are you not your illness, but you are not your thoughts. You weren’t the house you lived in for 30 years that almost killed you. You weren’t the job you lost or the friend to those people who abandoned you or the citizen of that place you had to leave.

There are a great many things that shatter lives to smithereens: natural disasters, death, lawsuits, injuries, accidents… and illnesses. All of them offer you an opportunity to notice that your story is not who you are. Your story is just a story.

After your story comes to an end, you may find yourself still breathing, blinking, sensing… for a blessed moment, your mind may STFU. In that blessed, quiet, short moment of no-mind, you may get a fleeting glimpse of who you really are.

You might find an ongoing choice in the rolling present moment to A) continue to surrender to this deeper truth of peace that you had always been searching for in your previous era, or B) scratch and claw and fight to regain your standing, your reputation, your profession and get well in order to restore your avatar in the world.

But wait… did that constant hungry effort to manipulate reality into conforming to your list-of-shoulds really ever do it for you? “Should” is the most painful word in the English language.

Yes, of course, you want to be out of pain. But tell me this: Were you ever absorbed in a book or project and, without thinking about it, realize that you are in the bathroom, peeing? Your body just meets its own need while you are otherwise occupied? That’s a clue.

Have you ever had a moment of insight? Do you know what it feels like to have an intuitive knowing? A revelation of truth or creativity that emerges through you, fully formed? Have you ever felt you were about to die? Have you ever played a sport and experienced that moment where time seems to slow down and you look down and marvel at what your body is doing in slow-motion even though you know, intellectually, that every thing is moving really fast?

Notice that in all these moments, not only is your mind not helpful, if it does become active, it would ruin things.

That’s a clue.

Your mind is not who you are. Your mind is not all that helpful, even. Your mind does not like this fact.

We live in a mind-deified culture. If you worship at the alter of the Western mind, your mind will be empowered to make you suffer. And make no mistake, some minds will burn the whole fucking democratic republic to the ground rather than get demoted.

The greatest opportunity of being sick is to clearly see how the mind works and then…

Fire Your Mind.

Your healing will start for real the day you surrender to the greater intelligence of nature itself. When life is allowed to live through you, as you, without your mind interjecting, solutions come to you on their own. Surrender. Fall. Dissolve.

This is not to say your pain will stop. But you may notice that when you remove your resistance to pain, it physically diminishes. That’s another clue.

Your mind has decades, even millennia, of momentum. It is rare for it to stop all at once, although that does happen sometimes. (Eckhart Tolle, Robert Adams, Ramana Maharshi, Anandamayi Ma.)

But you can switch your allegiance right now– away from the small, shitty, petty, upset, insane human mind, and towards the peaceful, open, loving awareness that is the essential nature of your being when the mind is quiet.

If you succeed in doing that even once for a split second, that’s enough. It happens again and you notice it more and more. Eventually, the peace becomes stable and ever-available. It is then possible that you could look back on the cataclysm that your life became and see it as the best thing that ever happened to you.

Holly

My Book Review of The Sensitives by Oliver Broudy


Oliver Broudy’s new book is part travelogue and part history lesson, with a splash of epistemology. “How do we know what we know?” and “why are we so damn sure?” Broudy is an agnostic, healthy, science-minded freelance writer who just got curious enough to delve into the world of environmental illness. This was enough to make me interested.


He brought a journalistic skepticism to the topic, but he was willing to enter this world to the point of becoming physically affected himself (having a hangover from sleeping in a mangey motel and staying nauseous for most of the trip from road food and various stimulants.) His capacity for observing psychological patterns (in himself, in others and especially in the minds of the chronically ill) was striking, especially paired with the eloquence of a poet.


Most compelling, however, is his thesis that the discrepancy between the lived experiences of sick people in this modern hell-realm and the science that could explain these experiences, pointed to the uncomfortable possibility that we might be on the brink of another scientific paradigm shift.


The term “paradigm shift” he points out, comes from Thomas Kuhn’s 1962 The Structure of Scientific Revolutions, one of the “most cited academic books of all time.” Kuhn observes that mature science regularly undergoes revolutions that change the matrix of understanding which acts as a basis for all scientific discovery during any particular era. The revolutions erupt as a natural consequence of “serious anomalous puzzles that disturbed the preceding period of normal science.” https://plato.stanford.edu/entries/thomas-kuhn/#ConcPara


The switch from Ptolemy’s Earth-centered universe to Copernicus’s Sun-centered solar system was a “revolution” that took 100 years to settle into its rightful place as accepted science, for example. https://en.wikipedia.org/wiki/Copernican_Revolution


Broudy quotes an EI researcher named Claudia Miller who pointed out that the cause of death of hundreds of thousands of Civil War soldiers was attributed to “miasma” (unhealthy vapors.) “It is possible,” said Miller, “that we may be at the Civil War stage in our understanding of chemical sensitivity.”


Our current matrix of understanding is still “the Germ Theory,” killing one microbe with one pharmaceutical at a time, with increasing vigor. While it has been clear for some time that the microbial world of bacteria, viruses and fungi are adapting quickly and are not only rendering our modern anti-microbial weapons useless, they are actually cooperating with each other by sharing genetic information to penetrate human defenses. https://www.sciencedaily.com/releases/2020/01/200114104027.htm


The COVID pandemic is but one example. It has gotten the attention of healthy people the world over by disrupting human life and economies, but scientists had been sounding the alarm on antibiotic resistant bacteria for decades, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4486712/ and had predicted pandemics for years. https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(16)32578-8/fulltext


The current scientific paradigm disallows study of more than one factor at a time in double-blind, placebo-controlled studies. Dr Dale Bredesen, a researcher and pioneer of a reversal of Alzheimer’s protocol, had his research blocked by this scientific myopia because his evidence calls for working with 36 biomarkers simultaneously– because that’s what works. https://www.beingpatient.com/dale-bredesen-end-of-alzheimers/


The current Germ Theory paradigm will eventually get crushed under the weight of hundreds of millions of humans with complex, “unexplainable” modern illnesses, like Alzheimer’s, Environmental Illness, fibromyalgia, Myalgic Encephalomyelitis, and the like, despite the gargantuan amounts of money that the chemical companies are pouring into the pockets of legislators to “sweep the tracks.”


Broudy is not as convinced as I am of this. But he is open enough to the possibility that he did his own research and leaves the questions hanging uncomfortably in the middle of the room, thereby tugging on the yarn of the current paradigm. He does not look away from the devastation of Environmental Illness, when almost everyone else does.


This is where it gets personal.


Broudy doesn’t look away.


He goes in search of Brian Welsh. “The swiftness, the methodical thoroughness, of Brian’s unmaking carried a certain Jobean trauma. A merciless humbling that stripped away everything, from material assets like clothes and housing, to conceptual assets like threat awareness and body knowledge– as well as all the relationships that gave his life meaning.”


To someone who has experienced this stripping away myself, I had to catch my breath to make it through the above paragraph.


The hallmark of Environmental Illness is the systematic dismantling of relatable people’s lives, to the point of total epistemological disorientation in space and time. “You find yourself left with only the moment you’re in,” said Brian. It was startling to have a writer who had not personally experienced this do such a good job of capturing it.

To someone who has lived through years of this “ungrounding” as an environmental refugee myself (and there are many thousands of us) who has had to flee the East coast, “smoke machines” (that create Halloween ambiance,) moldy demolition, burning plastics, RV chemicals and wildfires, etc– for someone who is chronically and apparently permanently allergic to modern civilization itself– Broudy’s skeptical, conventional wondering about the failures of this current paradigm sounds like a musical disharmony resolving into harmony.


As Broudy points out, we are pariahs. “It was as if their role as pariahs had allowed them to say something that the rest of us were no longer able to say, or had forgotten how to.”


Here it is: We are coming to you live from the next fucking paradigm. We are already in it.


We describe ourselves as “canaries” as a gentle way to remind the rest of you that ignoring sick canaries never ends well.


Broudy’s chapter about Risk Society, the evolution of insurance, and the imperceptibly increasing threat levels from a multiplicity of vectors that cannot quite be measured yet with current instrumentation (or wrestled into definitive causality,) was a thing of beauty.


And while Broudy did so well with gender positive pronouns and itemizing the egregious dismissals of female pain and syndromes by the patriarchal medical lens, he neglected to interview a female homeless environmental refugee. There are many. And the particular stressors of being sick, female, living in your car, disowned by society, floating in the vacuum of an unrecognized new paradigm and trying to heal your limbic system while feeling constantly terrified, are worth examining. Certainly, Broudy should have taken the time to include a paragraph about this.


When Broudy (with his EI ambassador, James,) finally goes far enough into the wilderness to find Brian Welsh, he successfully articulates the sanctity and holiness of being in a primordially clean, quiet place, where the “noble trees (are) structuring the light into columns,” and in the presence of a beautiful man whose pain has demolished even his resistance to it. Brian was like “a priest” and the forest “felt most like…a cathedral, in which the one unspoken word was ‘behold.’”


I know this place. While I am not a Christian, the wordless sacredness of every-little-thing is what becomes perceptible when every thought, emotion and resistance to what is gets stripped away. It can be an excruciatingly painful process, like the skin being pulled off a live snake, but when the pain is somehow not taken personally, it can be honored for what it is: The doorway to a quintessential human experience that most modern humans don’t even know about.


This, too, is part of the next paradigm. The quality of consciousness described here allows for the unmeasured complexity, in which humanity is but a small, destructive part of a much greater whole. The hubris of human domination will inevitably give way to a wiser, truer understanding of each element within the whole. Rather than attacking one microbe, there is already a new understanding that a shifting of the whole internal microbial ecosystem is what is needed instead to restore health. Of course, this is true for the “external” microbiome as well, which is why wilderness heals.


There will also be an understanding that there is, in fact, no actual boundary between “self” and “other.” This boundary is conceptual, only. At any given time, microbes are living in and on your body and both naturally-occurring and synthetic chemicals (not to mention wifi signals, electromagnetic fields and light) are affecting your cells and the cells of the microbiome in immeasurably complex permutations. As Broudy astutely observes “My body moving through the world, the world moving through my body.”


Broudy’s writing reveals that he is still squarely in the previous paradigm, but he is peeking into the new one that we– the EI community– are already inhabiting. In this, he is doing a great service to humanity. From the point of view of the status quo in power, he will be perceived as someone who is flinging slingshot rocks at an unexploded bomb.


But from my point of view, he had the courage to listen– to experience the quiet that goes against everything modern society holds dear. And there is nothing more heroic than that.

Holly Noonan

Decon Pro-Tips from a Bubble Girl

Lots of my older friends and my parents are now having to contend with a new fear of the microbial world due to the Coronavirus pandemic. Having lived for years myself with decontamination protocols that have been necessary because of an impaired immune system, I thought I would share some ideas for how to deprive this virus of the opportunity in your body.

There’s a meme on Twitter going around that says “Wash your hands like you are cooking for Ruth Bader Ginsberg.” Bring your attention to it like your life and all the lives of people you love depends on it. Because that’s true now.

Another example is how careful you are in handling raw meat (or hot peppers!) in your kitchen. You become very aware of what your knife has touched and that it needs to be washed before slicing that apple you pop into your mouth. 

  1. If your mind is full of words, you are likely not being present. Stop. Notice your breath. Reserve some awareness for what you are touching.
  2. Assume all surfaces are contaminated. Assume your hands are contaminated. If you feel that little sharp thing that tells you that you have sleep in your eye, leave it there. If your nose itches, don’t touch it. Open doors with your shirt. If you wash your hands and then grab the door handle to get out of the bathroom, your hand is no longer clean.
  3. When you are out in the world, your clothes and skin and hair get microbes and toxins on them. It’s okay. Just do what you need to do quickly, don’t touch your face, and get back home, where the microbes and toxins are fewer (or at least familiar.)
  4. Keep your car clean. Your car is the bridge between home space (safe) and the outside world (contaminated.) I keep unscented baby wipes in the car and wipe my hands and keys and steering wheel, knobs, gear stick after every store. I vacuum my car once a week and wipe all surfaces with a 1) damp cloth and 2) an electrostatic cloth (swiffer.) I use seat covers on my seats and wash them every week with my clothes. Use hand wipes after pumping gas.
  5. Keep your home space clean, so it can be your refuge. When you come home from being out in the world, take a shower and change into clean clothes. Separate “cozy home clothes” from “out in the world clothes” (and shoes) and keep your “cozy home clothes” cleaner. (You can make sure they are ugly so you don’t wear them out of the house.) Consolidate trips “out in the world” so you don’t have to do this twice in a day. Annoying and inconvenient because _____ and _____? Get over that. It’s just an idea.
  6. When cleaning your home, pay special attention to light switches, handles, doorknobs, keyboards and especially your phone. Spray your phone every night with hydrogen peroxide or natural hand sanitizer and wipe it down. 
  7. If you can’t buy your own hand sanitizer anymore, it’s easy to make. https://wellnessmama.com/281/homemade-hand-sanitizer/ Save old nasal spray bottles and keep some in your car. 
  8. Keep your mouth, throat and sinuses hydrated. Suck on zinc lozenges to prevent a sore throat and grapefruit seed extract tablets if you get a sore throat. Use Xlear nasal spray to keep your sinuses clear and hydrated. Drink fresh-grated-ginger and honey tea to help your body restore its balance. You can stay ahead of most exposures if you nip it in the bud in time. Never “tough it out.”
  9. Lastly, I regularly take risks and test myself to make sure the precautions I take are necessary for health and not simply out of a fear-based emotion. It’s easy to get OCD when the invisible microbes feel like “adversaries.” Remember that there are more cells in the microbiota in our guts than there are in each of our bodies. The idea of a discreet, separate “self” turns out to just be an idea. We are all, in fact, a “process” of communication of innumerable materials and microbes. When you “surrender to the mystery,” you still have to do your laundry, wipe your nose and wash your hands. But there can be an ease and a flow that stems from refusing to live in fear and committing to doing your part to protect the whole. 

Shining your truest light is the best health-elixir you have.  That happens when you can quiet the mind and feel connected. Then the sun shines from everywhere.

The Collapse of Safe Space

Yesterday I went to the center where I meet with my spiritual community every Sunday. This has been a place of exquisite refuge for me. I have built each week around having the energy and resources to get here because it has become so important to my sanity. I was beyond thrilled to find this place, because not only was it a setting where I was able to drop my mind and show up fearlessly as the deepest part of my self that is untouched by the drama and trauma of a human life, but the building was good! I felt good in this building after they had carefully and lovingly restored it 5 years ago for being a sanctuary for yoga, meditation and wholeness. It has been such an important part of creating a new, meaningful life in this new location that I counted it as one of the main reasons to stay here.

I know better than to get attached to things.

About six weeks ago, I alerted the facilitators that there was mold growing in the area where they have plants and a decorative bamboo water fountain. I mentioned it 2 or 3 weeks in a row. Then I left on a trip and missed two Sundays.

The trip was intense. I had a lot to process from going to see my family. I am stable enough in my recovery that I trust that I can recover from big hits. That means I know I will get inflamed and exhausted and sick by going to the East Coast, but I also trust that I am able to function while feeling crappy and drug myself to sleep. It is hard to process emotions when you feel like crap. Crucially, I have a safe place to come back to.

I was looking forward to having an opportunity to process Sunday morning. I always feel better Sunday evenings.

When I walked in, I had forgotten about the mold. Within seconds, I could tell it had bloomed. Not only was the smell overwhelming, but it was obvious that this mold was a “slammer.” That means hours or even days of recovering from minutes of exposure. I felt dizzy, my face and eyes started to burn, my lungs hurt, my kidneys flared up and I was shaken. It was like walking into a room with a diesel engine running.

I knew I should leave, but I was already contaminated and wasn’t willing to just pop this building onto my “No Go” list without an effort to solve this.

The manager happened to be there on a Sunday, so I knocked on his door. He saw that I was ashen and on the brink of tears and asked me if I wanted to sit down. He said he had gotten my messages and had examined the area with the fountain with “someone who was mold sensitive” but they couldn’t smell anything. I found that amazing.

I told him that I suspected that it was the decorative bamboo fountain that was rotting, and would he be willing to remove it? He hesitated. Hmm. “Its a choice between aesthetics and health,” I said. He said “Yes, but for just one person… what would you do if you were in my position?” A skillful question.

“I would remove it.” I said. “I may be able to feel it when others can not, but make no mistake that it is affecting everyone.”

He was compassionate and reasonable and we agreed on a plan for me to purchase a new fountain and coordinate installing it. He conveyed that of course he wanted this space to feel safe for all people who use it.

I stayed when I should not have. I stayed in the corner farthest away from the mold colony and focused on calming my mind. A friend opened the door near me as a way to offer me fresh air.

That was kind, I thought, but I knew that if the air flow was coming into the room, it would help and if it was flowing out of the room, it would be flushing the mold toxin towards me and I would have to leave immediately. I walked to the door to check. It was a 50-50 chance.

It was flowing in and smelled fresh. I decided to stay as long as I could.

What followed was a profound emotional processing. Instead of processing the trip, which was backed up inside my tired body, I had to process something else. Bigger.

I was overwhelmed by the accumulated trauma of losing my safe spaces over and over in the last 3 years.

The very first one was when I was so sick I was bedridden and realized I had to muster the focus and energy to move out of a moldy house. When I succeeded in activating this clear knowing of what was needed, I got the opposite of support. I got abandonment. If my diagnosis had been MS or cancer instead of mold illness, the response from my community would have been vastly different.

When your experiences do not correspond with “consensual reality” comprised of the agreed upon perceptions of the people in the cultural framework that surrounds you, you have the human experience of “marginalization.” Marginalized people are everywhere. They are actually most of us, when you add up all the margins together. “Reality” reveals itself as just a big Matrix everyone is jacking into.

When the kind and compassionate facility manager balked at the inconvenience of removing an aesthetic element when it meant I would never again be able to come to this spiritual sanctuary, it lit a stick of dynamite that blew open the trauma I had not processed.

So process it, I did. (My mother said “Do not waste this suffering!”)

I sobbed in a crowded room. I watched the waves of psychic pain and the memories of terror as I watched home after home after home become unsafe for me. I recalled the moment when my father’s house became unsafe, after luxuriating in the archetype of protection and stabilizing love for weeks, the neighbors fired up a “fake smoke” machine as part of their Halloween display and my body went haywire from the chemicals. I could not even be there, when all I wanted was to cry on my father’s lap, I had to flee. Again.

So I didn’t flee this time. I watched my mind and I cried. I knew when I left this precious spiritual sanctuary, I would not know if and when I could return to this place.

I did leave early. I asked a friend who lived nearby if I could use her shower. I have long stopped carrying a change of clothes in my car in case of contamination. It is so rare that I come across “slammers.” But I happened to have a change of clothes on this day.

Allowing the suffering to overwhelm me while grounding myself in the stillness and joy that is always there underneath the maelstrom is the core of the spiritual process that is overtaking me. The bigger the maelstrom, the more potent the stillness. With this process, the historical trauma that was locked inside this hyper-sensitive body gets ventilated once and for all. Never to return.

Reversing Cognitive Decline

A some point, after relinquishing control over the direction my life was going, I was brought to this place. It’s a clean place, an old adobe guesthouse that I am able to live inside. After being forced to camp over two high desert winters, I relish having hot water, my own bathroom, a couch and a woodstove. I can be cozy and warm again, finally.

Not long after moving in, a book came into my hands. The person who handed it to me, Ellen, deeply needed to understand the contents and wanted my help. The book was “The End of Alzheimer’s– The First Program to Prevent and Reverse Cognitive Decline,” by Dr. Dale Bredesen. The program it laid out was called “The Bredesen Protocol.”

I devoured this book and became really excited when I realized 3 things:

  1. It was a Functional Medicine program, like the one I was using to heal myself. (“The Shoemaker Protocol.”)
  2. “The Bredesen Protocol” includes “The Shoemaker Protocol” in its entirety. Of the six types of Alzheimer’s that Dr. Bredesen identified, the mold-induced type was Type #3. Reversal of Type 3 Alzheimer’s, as it turns out, is my current lifestyle.
  3. My grandmother died of Alzheimer’s, I myself am APOE4 positive, and I have CIRS– a chronic inflammatory disease. That means I had just been handed a strategy to AVOID developing Alzheimer’s myself.

Dr. Bredesen advocates everyone getting a “Cognoscopy” by the age of 50, much like getting a colonoscopy. (For women, this should be done before menopause, which happened for me early, at 46.) The reasoning behind this is that early detection of metabolic and hormonal imbalances that lead to Alzheimer’s can be rectified before they even lead to symptoms of cognitive decline. Since there is a “point of no return” where this protocol can NOT reverse decline, it’s much cheaper and smarter to prevent the decline in the first place.

I am sold on Bredesen’s Approach. Learn more here and here and here. In a nutshell, through his career as a conventional medicine researcher at UCLA, Dr. Bredesen identified 6 types of Alzheimer’s dementia: Hot, Sweet, Cold, Toxic, Vascular and Traumatic. He has applied the fundamentals of Functional Medicine to identify causes of inflammation (infections, autoimmune issues, allergies, etc.), causes of what is essentially diabetes of the brain, “atrophic” factors like low Vit D and low hormone levels that create a “synoclastic” environment in the brain where synapses can’t regenerate, toxins from organic and inorganic chemicals and biotoxins from lyme or mycotoxins, the impacts of vascular disease and head injury on the brain’s ability to heal and regenerate. Through addressing each patients individual challenges, Dr Bredesen has created a targeted, individualized program that works to correct up to 60 imbalances. The reason conventional medicine has failed so abysmally at curing Alzheimer’s is that they are looking for one, single enormous payday through a pharmaceutical monotherapy. SO 20th century.

Over the course of 12 months, I participated as Ellen tried to implement the Bredesen Protocol on her own. She got a little guidance from a Functional Medicine doctor who had heard of the program, but didn’t know how to implement it. She got a smattering of lab tests done and followed the advice on changing her diet, but after plateauing, she began to decline again.

That’s when I decided to officially sign up for the Bredesen Protocol training through the Institute for Functional Medicine. They just started offering the training online and the price to enroll for non-medical practitioners is $1550.

While it has been fascinating learning the clinical approach to this illness, I have found that actually connecting to practitioners who can help us really implement this protocol has been a huge challenge. There are not that many practitioners yet who have taken the training.

We live in a very remote area in the Southwest. We couldn’t even get a list of certified practitioners who were physically in our region (within a 6 hour drive) without signing up for the AHNP program, which just launched, and is clearly still in Beta testing phase. This company has not invested in a User Interface Specialist and seems unaware that it is set up for doctors, but not for patients.

From a patient’s point of view, the logistical tasks of setting up appointments in different cities while cognitively impaired is an impenetrable barrier to entry for most people. These are the steps the patient is required to take AFTER signing up for the AHNP program;

  1. Assemble your own functional medicine team (which always includes at least a doctor and a health coach.)
    1. Find a Bredesen Trained doctor in a city near you. (Some do Telemedicine, but they don’t tell you which ones, and of those who do Telemedicine, some require an in person visit for the initial visit, but they don’t tell you which ones require that. It’s based on state laws.)
    2. Find a Bredesen Trained Health Coach. Most doctors don’t “provide” one, so you have to find one who can work with your doctor. They might be in a different city. You can assume they can do virtual appointments (over the computer) but there are not that many to choose from and who knows if you will like them. You MUST have a health coach, or it won’t work.
  2. Figure out which special laboratory will do the Bredesen Labs for the cognoscopy (usually a LabCorp nearest to you, but preferably one that has worked with the doctor you have chosen so they don’t screw up handling some of the novel labs required.)
  3. Figure out which special radiology clinic will do a volumetric MRI using software like Neuroquant or NeuroReader so that you can provide this to your doctor.

While the AHNP program advises that you can go ahead and get your labwork done before even choosing your doctor, this presupposes that all phlebotomists who work at all LabCorp locations know how to process all Bredesen and Shoemaker labs accurately.

After 3 years of having Labcorp process my CIRS-Shoemaker labs, it is clear that the only labs that do it correctly are the ones that are in constant contact with Shoemaker practitioners. These labs need to be trained on how to process things like TGFB-1 and c4a. You can guarantee they will get it wrong on the first try. The same is true for MRIs.

I was exceedingly lucky that early on in my illness, I got connected with Peg DiTulio, FNP. She is extremely well organized and has a cracker-jack team of administrative assistants. She is also Bredesen trained. But she is on the other side of the country, in New Hampshire, and requires an in-person visit to begin care. Having had her as my first functional medicine provider, however, the bar got set high for what I could expect.

We finally got access to the list of five doctors in our region after joining the AHNP program. We reached out to one practitioner on the list and didn’t hear back for a week. Then we noticed some unfavorable reviews on Google. Two other practitioners appeared from their websites to be “anti-aging” enthusiasts, but didn’t mention the Bredesen Protocol. A fourth seemed young and eager, but had a Google Voice-forwarded phone number and a voice message that appeared to be him talking about himself in the 3rd person, and encouraging us to leave a message. Um…nah.

We wanted an actual doctor’s office with an actual receptionist who answered the phone. We found The Merritt Wellness Center. They were not MDs and therefore had no prescribing rights and would not deign to deal with insurance. It was out-of-pocket or out-of-luck. We spoke with their practice manager, Patrick, about the details of the program. It seemed promising, but also complicated. Picking the doctor was just the beginning!

They have a comprehensive program that included visits with a DOM (Doctor of Oriental Medicine,) a nutritionist and a health coach. First we wanted to know if we could replace their health coach with myself, since I am a health coach, social worker, CIRS survivor AND I’m getting certified in the Bredesen Protocol myself. Nope. We asked if we could choose our own source of supplements since I can get them wholesale. Nope.

OK. Next we learned that we can’t just join their Bredesen Protocol, we need to do a preliminary program, called a NeuroCheck, to determine eligibility for the Bredesen Program. This cost $750 plus another $600 for the special MRI. But still, I am optimistic, because they were one of the first centers in the country to offer Bredesen’s ReCODE (REversal of COgnitive DEcline) program. They already have a track record of success and have 25 other people engaged in this very process right now. Plus, it is smart that they require only an initial commitment to a single appointment to review the MRI and CNS Vitalsigns test. We get to meet them and see how we like them. They get to meet us and assess whether or not we are up for the formidable task of implementing this exacting program over the course of one year.

We were well into the program before realizing that while the practitioners can diagnose and treat on the basis of the ReCode Report, they don’t have access to it unless the patient is signed up through AHNP. This ReCode Report is actually proprietary software developed by Dr. Bredesen himself to synthesize an enormous volume of lab data into usable form. The doctors can’t see it unless the patient has an account with AHNP and chooses the doctor on the AHNP platform.

So far, this has required a lot of woman-hours to just get to the starting gate. I am so thoroughly impressed with the Bredesen Training program through IFM
and the clinical basis for this healing program that I am convinced this will work to restore Ellen’s cognitive functioning. I also have personal and very compelling first-hand experience of recovering my own health (mostly) because I followed the Shoemaker Protocol. (This continues to require that I live in a low humidity area, sleep on a camping mattress and keep hyper-clean, for the moment.)

All told, this program might cost a patient as much as $15,000 for one year. Out. Of. Pocket. But for the price of a car, you could get your life back. It’s a no-brainer, no pun intended. It seems like a daunting amount of money until I think of the $60K-$80K that CIRS has cost me over the last 3 years (not counting lost wages.) There is nothing more expensive than NOT getting connected to the people who can really help you.

I will keep you posted on this amazing process.

 

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?

 

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 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?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 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:

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 CIRS 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.