I love you like a brother.
That means the delusion of separation has dissolved. I feel you from the inside now.
So can we discuss this freak out you had when I reacted to you?
You know how sensitive I am. You watch me predict that the truck 10 car lengths in front of us is a diesel. And I’m right. Every time. I can smell the cologne on the man driving up the hill next to my house because his car window is open.
I can locate a colony of mold by feeling it. It was confirmed when they ripped the kitchen out. I could also tell that it wasn’t stachybotrys. And I was right.
I can tell you if I was bitten by more than one type of dust mite. Get your microscope out.
Yes, I get sick easily when I am reacting to environmental stimuli. Coughing fit. Brain fog. Insomnia. Pain. Burning lungs, etc. You watch it happen.
Is this sensitivity OK with you so long as I am reacting to anything other than you? Can we talk about that?
It’s not personal. It’s also not my fault.
If, for example, you walk through that moldy Army Navy store in town and then come in and sit on my couch, you can bet I will feel it. And then have a lot of cleaning to do. So it is a WAY TO LOVE ME to show up clean. You know. Clean by MY standards, not by yours. Even then, shit will happen. It matters that you try.
You know how many times I have heard “You shouldn’t be able to feel that!”?
I get it now, that most people can’t feel each organ inside their bodies, like I can. The sensory processing of this body-mind is perhaps unique. But it is not inaccurate.
I can perceive things that you can’t perceive. Things that are really there. Seriously, how is it that I am the one who is broken because of this fact?
Say you are color-blind. (See where I’m going?) My ability to see red and green could be seen as an asset.
It is only because of dogs’ good natures that they don’t mock us humans, because of how handicapped we all are from perceiving the obvious facts at hand. (That this turd was deposited here about 3 hours ago by a female husky. Duh.)
You think your human senses are “Reality” (with a big R)? What if they are just electrical impulses sent through flawed and various sensory organ-tissues to a deluded and opinionated human brain that weaves them all into the hologram we are supposedly agreeing on?
“When we examine the sensory systems of other animals, we find that many of them can detect stimuli that are undetectable with human senses. We use the prefixes “ultra” for stimuli that are above the range that humans can detect, and “infra” for stimuli that are below the range that humans can detect. Just because we label something as “ultra” or “infra,” however, does not mean it cannot be detected, only that it cannot be detected by human sensory systems.”Perceptual Worlds and Sensory Ecology
By: Stephen Burnett, PhD
Perhaps there’s a variety in “human sensory systems.” Why not, there’s variety in everything else. It’s not up to you to declare whether my perceptions are “real” or not. Your perceptions are not “better” because they are conventional.
Now, if you want to debate the “reality” of ALL perceptions, I’m totally down for that discussion. I don’t believe in mine more than yours, or vice versa.
“If it’s not there when you’re not thinking about it, it’s not very real, is it?” — Adyashanti
“Through our eyes, the universe is perceiving itself. Through our ears, the universe is listening to its harmonies. We are the witness through which the universe becomes conscious of its glory, of its magnificence.” — Alan Watts
But let’s get back to your freak out. Notice how I called it “your” freakout? Because I didn’t freak out. You felt fine and had an emotional event associated with my physical reaction to you. I got sick, didn’t blame you, and just started cleaning everything. I’m used to this shit.
So I got to deal with an illness and had the additional burden of fielding your emotional event over it. I just want to point that out.
I’m glad to hear that you “forgive me for making you feel bad.” I’m just wondering about how that works.
I never blamed you for me getting sick. I never thought it was your fault. But I did, indeed, get really, really sick. You don’t need to know all the details. But you should know that I did the best I could on that last day.
I had never encountered that pattern of experiences before.
Luckily, I had heard of other people having the kind of experiences I was having, so I was able to get connected relatively quickly to doctors who had experienced it themselves, and had figured a way through it. They helped me a lot and now I’m doing better than when I started.
I wish you had told me earlier that you “didn’t believe in mold illness.” You weren’t honest with me.
You finally told me that you thought my troubles were probably “from bacteria or viruses” or some other microbe you can’t see with your own eyes. Bacteria are resisting antibiotics and killing millions of humans everyday and, well, we see what viruses can do.
It makes no sense that mold would be left out of the Armageddon party. Of course mold is also mutating.
And of course the illnesses during this era will separate people, isolate them and pit them against each other. I refuse to participate in that part. I have never blamed you.
The fact is, no matter how fervently you believe my illness had nothing to do with you, you simply don’t know more about this than the doctors and researchers who have helped the legions of people like me. That is a crime of arrogance.
Am I only allowed to have illnesses that you believe in? Ones you’ve experienced yourself? Can we discuss that?
I can see through this to a man who would never want to hurt anyone, certainly not people he loves. A man who regrets and fears his own darkness.
So in order to protect yourself emotionally, you had to decide that the origin of my illness was mental? And then later forgive me for “making you feel bad?”
Look. Everyone gets a moment to realize that this chemical and mold hypersensitivity thing is an expression of ecological degradation. The “mystery illnesses” will continue to proliferate as the system breaks down.
Did you know that people with nut allergies were accused of hypochondria when they first started to appear? Do you know what it feels like to not be believed when something is true? Black people know. Rape victims know. People who have chronic fatigue syndrome and who are gaslit by arrogant, ignorant doctors: We know.
Who made who feel bad? Want to call a truce on that?
As for the yuck you brought into my house… it was not your fault that you came across it. Also, it was not my fault that I could feel it.
The only reason you think I treated you badly is that you don’t believe me that I am reacting to actual, measurable substances. That’s a double bind that you are creating yourself, and it’s probably triggering a wound of being treated badly previously by other people.
That wound predates me. If that wound were not there (and I’m sorry that it’s there), and you were in alignment with the fact that my sensitive body picks up on substances that actually are there, then you would see that I did the best I could in an impossible situation that was not either of our faults.
I deserved the benefit of the doubt. And your compassion.
You know how I know that it’s possible to not take this personally? Because people who love me show me that all the time. As an expression of love. If I react to their shirt, they just go and change into another shirt with no drama. That’s love. If they do feel triggered or hurt, they witness that and feel that and then don’t blame it on me. They don’t believe their mind. That’s how I like to be loved.
It’s not like I haven’t tried everything to decrease the sensitivity. Seriously. Fuck.
My thesis is this:
1) Tug on the yarn of “what you know for sure” until you’re not quite so sure. Then,
2) Keep pulling until you go ALL the way, until your “separate self” dissolves into the whole.(Because waking up is the only solution now.)
I am the kind of friend who appreciates you for the beauty that other people can’t see in you, who loves and celebrates your quirkiness, who honors your becoming and your intention and still challenges you to be a better person, to heal and feel whole and love hard, even if it’s scary. I am the kind of friend who will forgive you for being a dumbass. I am worth loving. I am worth listening to and learning from. A side benefit of hanging out with me is getting healthier yourself. There is nothing more important during this time just before the earth wobbles than to learn how to be a better human being, to be humble, to be of service.
Maybe, just maybe, my sensitivity would be an asset to you too.
If you are a mold avoider, this phrase explains itself. There can be fifty catch-22s happening in your struggle for survival on any given day. The very first one– once you suspect the problem is mold– is that you want nothing more than to curl up in a cozy, warm ball and put your aching head on someone’s lap…. but everywhere cozy and everyone’s lap will make you feel worse. Today my Catch-22 includes being exhausted and unable to sleep. But yours might be that you are starving and food hurts your body. Or maybe that to save yourself for your child, you need to leave your child. Maybe people are threatening to take your child away because they don’t understand the only two things you have found that are finally helping. Or maybe your only place “to live” is actually killing you. Or that going to where the air doesn’t hurt you puts you in tick habitat. Or that your nervous system needs to relax for you to heal, but you are sleeping in your car and constantly terrified of men. Or that you need your doctor’s help and they are gaslighting you. There is always more need than there is money. It feels like the finish line keeps moving when you get close to it. Or all of the above. It is legitimately impossible to explain. The human imagination fails long before comprehension.
I have said many times that in a mold-avoidance journey, you strive to be clean, warm and dry, but often you only get 2 out of 3. Clean is almost always more important than warm and dry. Somehow you learn to be thrilled with 2 out of 3. At least it’s not 1 out of three!!
It may be hard to hear this, but comfort and routine are not normal for most humans in history. It is possible to observe your mind in the middle of deciding that this is bullshit and that you deserve to have more than you have. This is not to say that this is not an impossibly absurd struggle. It is that. It is ridiculous on every level.
It’s just that it is possible that it is not supposed to be otherwise. It is possible to decide that this is an amazing opportunity to wake up to the fact that nothing on this level of reality will ever ultimately save you, redeem you, finish you, or work out for you. And that the comprehension of this fact, the realization of “Oh! This is how it works!” is actually the key to your liberation. And maybe that’s the point of it.
You will lose everything. Your money, your power, your fame, your success, perhaps even your memory. Your looks will go. Loves ones will die. Your own body will eventually fall apart. Everything that seems permanent is absolutely impermanent and will be smashed. Experience will gradually, or not so gradually, strip away everything that it can strip away.Jeff Foster
Right now we stand on sacred and holy ground. For that which will be lost has not yet been lost, and realising this is the key to unspeakable joy. Whoever or whatever is in your life right now has not yet been taken away from you. This may sound obvious, but really knowing it is the key to everything, the why, the how and wherefore of existence. Impermanence has already rendered everything and everyone so deeply holy and significant and worthy of your heart breaking gratitude.
Loss has already transfigured your life into an alter.
The deepest truth goes beyond the opposites. But before that clicks, the deepest truths can be felt in paradox. Mindfulness is an empty mind, not a full one. As Eckhart Tolle says, “You are special. Just not more special than anybody else.” and “Emptiness and fullness are the same thing– the same no-thing.” For all the complexity, it really is quite simple. It’s flow state. You have to stop thinking in order to feel truth. It shows up through a quiet, open heart as intuition and can guide your way. “It’s counter-intuitive,” except that’s another paradox. It’s just intuitive. Your mind is perhaps not accustomed to acting only as a servant to the knowing of the heart. Is a paradox so different from a doublebind? Maybe each one is a call to prayer.
Shifting from the mindset of “It should be different” to one of “This is a perfect teacher” changes your whole life’s unfolding. And it is not to compare your misery with another bunch of miserable people. All human misery is trying to teach us to wake up. It’s saying “Snap out of it! Look at the incredible joy that is available to you right now! You are missing it!” Your dearest and most beloved friend would say the same. These challenges are so incredibly hard, watch for the moment when your mind makes it worse and stop it there.
Marginalized, ostracized, victimized, oppressed and poor people the world over know this catch-22. It hurts so much more when you give the oppressor the power over your internal happiness by allowing their point of view to prevail in your head. The way to be free is to decide to be free, first… Maya Angelou will be a talisman in my pocket, on the new quarter, reminding me to always rise again.
I choose to welcome this illness into my heart as the greatest teacher I have ever had and that choice has changed everything. It hasn’t instantly made my life awesome, but it has given me the keys to my own happiness and it HAS guided me to solutions that are better than my mind could have come up with. That is clear. I refuse to resist life’s will. I let it humble me even further and dissolve the remnants of the conditioned structures of my personality still blocking the light of wisdom from shining fully. It is not “me” who will prevail, it is life itself that will prevail through this body when “i” can get out of the way.
The wisdom and intelligence of life, of Earth, is calling for a great humbling of humanity. Those who can learn this language and stay in alignment with life itself (which does not happen to be in alignment with modern comfort and routine) will perhaps become servants of a greater wisdom in the future. Who knows?
Mold illness is compelling thousands of people (soon to be many more) to drops their phones and go to the woods for extended retreats. We learn how to methodically avoid the tens of thousands of pollutants, to cultivate a good biome in and around us, to heal deeply. Our sensitivities make everyone around us healthier. We go back in time to pristine places and connect with our hearts. We listen with our ears cupped to the messages of indigenous populations who have never lost the knowing of sustainability.
And while recognition of the importance of indigenous knowledge grows, in particular in solving the climate and biodiversity crises and preventing the emergence of contagious diseases, we must ensure that indigenous knowledge is owned and shared by indigenous communities themselves.—António Guterres, Head of the United Nations
Who is to say this is not part of a greater plan of healing for the planet? Maybe Mold Illness is actually part of the solution, shaking us to listen to an older language than our own. Who knows? Perhaps the doublebinds can teach us to surrender to something deeper.
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.
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. ❤
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.
“Whether you can observe a thing or not depends on the theory you use. It is the theory that decides what can be observed.” — Albert Einstein
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.
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?
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.
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.
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.”
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!
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.
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.
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.
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.
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.
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.
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:
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;
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.
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?
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!
“An illness has enormous capacity to pull you into greater unconsciousness and it has an even greater capacity to awaken you.” —-Eckhart Tolle
When I was 45 years old, my life burned to the ground.
I became bedridden with an illness that my doctors could not identify. In between writhing in pain, I frantically researched online what was happening to me. My body was wildly misfiring and doctors clicked their tongues and wondered how the mind was capable of creating such drama. But they were measuring the wrong things.
That was two years ago. What followed was a collapse in my identities, one by one. First, I moved out of my boyfriend’s house. (I didn’t know it at the time, but it would be the first of twelve moves in one year, while sick.) Then I lost my job. I couldn’t take care of my son, so he stayed with his dad. My boyfriend disappeared for a while, then returned as a friend. The place I thought I held in my community dissolved when most of my friends dropped away. I began to wish I had cancer instead of whatever I had, because then at least my community would surround me and feed me, I thought.
Having a serious illness can be like walking into a house of mirrors with a baseball bat. After several reflections shatter, you want to smash them all to find out if any of them were real.
Five months into it, I got a diagnosis. Hallelujah! I rejoiced until I learned what the solution was. I learned that I had CIRS– Chronic Inflammatory Response Syndrome– or mold illness. Although it was an extreme challenge to even travel out of state to see the specialist who diagnosed me, the choice I now had in front of me was terrifying.
Since mold makes you sensitive to chemicals, and since there is no such thing as a mold-free or chemical-free environment, my choice was either to maintain my current path (investing all my money, energy and time in order to maintain my terrible quality of life) or I could choose what appeared to be the only realistic long shot hope of recovery. I could move by myself to the desert.
I resisted the long shot path for too many months . It became absolutely clear that I had to do it when I woke up covered in frost. Autumn in Maine. I was unable to be inside any building for more than a few minutes before my nervous system went haywire. I had to sleep outside.
I had to sell my car and give away anything that had been in the moldy house. I set off in October in a van, with all new clothes and donated items from Walmart for camping. I didn’t want to leave. I didn’t know where I was going. I was simply searching for a place that didn’t make me sick. I had no idea how difficult it would be to find. I felt like crap.
I was lucky that my family believed me and supported me from afar. Many people on the online forums were abandoned by their families. Over the course of this odyssey, I met hundreds of other environmental refugees, in person and online.
After driving around the United States for three months, despairing that I would ever find a corner of it that wasn’t polluted, I finally found a place. A hot springs in the center of a 3 million acre high desert New Mexico wilderness. Again, Hallelujah! (dot, dot, dot….wait.)
I found myself in a place that was so remote, not only did my phone not work, there weren’t even radio signals. There was no electricity and it got down into the teens at night. There were no showers or flush toilets. Since laundromats made me sick, I had to hand wash my bedding and clothing. That took several hours every day. I used to listen to streaming music constantly, so I didn’t have CDs. There was no music to distract me from the sound of water and birds or the cacophony of my dark thoughts.
There was internet in the valley, but it was very slow and I had to be in proximity to a building that made me sick in order to be online. I had never been so isolated.
I used to compost and recycle. I used to avoid Walmart. Now I was guarding my trash from wild animals and stashing it in trash cans at the gas station when I went into town. Walmart was the only reliably clean building I came to trust. The collapse of identities continued apace. Safe, middle class American, mother, productive citizen, dancer, New Englander… All shattered. I got to wondering what made me human.
I became an animal on a mission for survival that had no guarantee of success and lots of bedridden role models to remind me of the typical fate of someone with this illness.
I spent all day, every day working on keeping myself alive and clean and away from contaminants. There was no way to prevent all contamination, however. One day, a man rode his bike to visit me. He came right into my safe zone, upwind from my open van door and blew the fumes of hell all over me. I meekly said “You can’t be here,” while my knees buckled and the world spun.
He had contaminated my van and one of two sets of bedding. I worked for weeks to try to clean that bedding– I boiled it, soaked it, ozoned it, bleached it and eventually had to give it away and buy new stuff.
Alone with my mind most of the time, I was tortured by the thoughts of what my life had come to. I didn’t want to be alive any more.
There were wildlife sightings. A mountain lion had come through camp and I’d heard stories of a bear attack nearby a few years ago.
Eventually, my van no longer worked as a place to sleep, since it got contaminated every time I drove into town. I resorted to sleeping outside in a hammock. The air was great, but there was wildlife around at night. Locals advised me to get a gun, for my own protection. Everyone owned a gun. I looked at some, but opted against buying one. I didn’t trust myself with it.
I got a taser instead. I knew I wouldn’t use that on myself. From March to December, I slept outside in that hammock. If a mountain lion or bear observed me sleeping, I didn’t know it. Several times, however, Awareness woke me from a deep sleep to alert me to the approach of a band of javelinas (wild boar.) I clicked my taser and they fled. My heart pounded.
On one cold, windy night, I lied down on a cot inside a new tent. Within minutes, it was obvious that the tent was contaminated and that I would have a completely sleepless night. This was not unusual. I knew the only option was to get up, take a bucket shower and try sleeping elsewhere in my back-up bedding. I boiled some water and got naked outside in the freezing wind. I became aware that I was enjoying the hot water pouring over me under the cold, starry sky. It was magnificent! Aha…it’s my thoughts that cause the suffering! And I have a choice to not think them.
I started to see progress in my health, but after several months, I got a new infection. I struggled to keep myself clean enough to not go downhill. I wondered why I was keeping myself alive.
It was at this point that I met Michael.
He came to camp at the hot springs. After not more than ten minutes of chit-chat, he looked at me sideways and said, “I don’t usually bring this up, but I have two questions for you; What is your knowing that can’t be spoken? and What do you want from this life experience?”
I stammered to answer these questions and don’t remember what I said. But in the days that followed, I was in some kind of crisis. I kept going to deeper and deeper layers to answer these two questions to myself, over and over again. It seemed manic.
I had released myself from the seeker’s quest years ago. I had given up hope in it. Do I really want to rip it open again on top of my current struggle? It seemed I had no choice. Michael told me where I could find him, so I went to his house.
It was located in a scungy little dilapidated village, littered with 100-year old abandoned adobe buildings. The lot across from his place was strewn with trash, dismantled vehicles and scrap metal piles. But the gate to his yard was decorated with prayer flags and a golden metal lotus flower. Pulling into his yard, I saw elegantly tiled terracotta roofs, I heard bells and I smelled flowers. I had spent years in Japan, China and Nepal and this was one of the most beautiful temples I had ever seen. Jeez, who is this dude?
He was home and I asked if he would mind talking with me about something. “Of course,” he said, and sat there in complete presence. I found myself pouring out the details of my earlier life. Finding the Tao Te Ching and pestering my dad about learning how to meditate when I was a teenager. Taking a solo pilgrimage to temples around Japan on a motorcycle when I was 26. My profound restlessness and suffering after I had grounded myself in a marriage before I had found a teacher. I committed myself to that householder life by having a baby at 34 and it worked. It quieted my wanderlust and became my personal-growth path, but the marriage failed anyway. Being a seeker meant suffering, I decided, and I didn’t want it anymore.
But I danced. I danced so hard and so often that I became transparent. The whole reason to dance became the stilling of my mind so that I could reside in pure presence at least once a week. I knew this was connected to the mystery that had called me. But I didn’t know how to do it without dancing and I was too sick now to dance. Rekindling a hope that I could wake up in this lifetime felt cruel, as well as inevitable. It was true that I wanted nothing more. It had always been true.
Michael just listened. He teared up witnessing my suffering. He gave me a tour of his garden. He cultivated nine kinds of bamboo and “rescued” Buddha statues, although, he said, he didn’t consider himself a Buddhist anymore. He invited me to dinner and I burst out crying at the simple normalcy of sharing a meal inside a building.
He loaned me his audiobook copy of Eckhart Tolle’s The New Earth. I listened to it while I did laundry by hand for weeks. I had read the book years earlier when it had first come out, but I had not suffered enough yet to really understand it. This time it clicked.
“If you need a crisis, you will get one.” “Suffering is the greatest spiritual teacher.” “Luckily, life is merciful and generous and will provide you with the suffering you need in order to stop identifying with your life story.” I downloaded some Tolle retreats on Audible and devoured them. I started rejecting my “inflammatory” thoughts. Anytime I observed my mind thinking that things should be different than they were, I shut it down.
Michael then brought me to a retreat at a local center to attend something called “satsang.” I had never heard that word and the gathering was being held in an old building that I could barely tolerate, but once the teacher opened the room up for questions, I asked one. I had absolutely nothing to lose. I hated my life. I hated my mind. I hated my problem. I was willing to do anything.
The teacher’s name was Rishi. He had big, soft brown eyes and I instantly adored him. His questions were both relentlessly pointed and deeply compassionate. He gave me a tour of my own mind in front of a room full of people who had studied with him for years.
Over the next several months, I became dear friends with Michael, and Rishi took me on as a student. Both of these men had dealt with decades of chronic illnesses themselves. Michael was struck down with encephalitis when he was 36 and still dealt with intense, daily pain nearly 40 years later. Rishi navigated raising two children and teaching meditation while being intermittently bedridden starting in the 1980s. They welcomed me onto the well-trodden path, they said, of illness as a path to awakening.
Illness has a way of shattering your conventional reality and revealing the transience of all your capacities. That transience was always there, you realize, it all just seemed real and solid before. Illness has made countless people uncouple their lives from their “stories.” Your story can die, it turns out, and your life can go on afterward. They told me about how Ramana Maharshi, whose “story” died when he was 16, but who lived til he was 70 years old. He died of cancer of the arm without much treatment, but entirely without suffering, because suffering requires a story.
I started feeling lucky. My illness started feeling meaningful. My suffering dropped off precipitously, even though I was still constantly dealing with the same challenges of getting overwhelmed by contaminants that would light my body up like a wildfire. I changed where and how I slept each week, trying to stay ahead of the galloping inflammation and pain. But I got help from good doctors, got the new infection under control and made some progress.
Rishi helped me “drop it” over and over as I attempted to defend the reality of my mind-made identities. Just allow emotion. It comes through, but it’s not you. He said he could see who I am without these conditioned identities and simply held that vision of me each time until I could feel it myself.
Once, my twelve-year-old son made other plans on a Sunday night and didn’t show up for our regular Skype chat. I waited for an hour, sitting on a cold brick getting bitten by bugs outside my friends’ moldy house. I sat far enough away from the house to not get contaminated, but close enough to pick up their wifi signal. Defeated, I walked back to my campsite and completely lost it. I sobbed uncontrollably, sitting on the sharp gravel as it dug into my ass. I didn’t even wipe away the snot and tears from my face. I just witnessed my heart breaking further and further open, ever more exposed and raw. After about thirty minutes, my seemingly endless tears stopped and I got up and made dinner.
There have been times when I got overwhelmed by the sensation of being dismantled. Like when I realized that even all the good memories and all the things I was proud of were also figments of my imagination. It was easier to let go of the difficult things. “But ah, just wait til you try to drop the delicious, pleasurable things,” said Rishi.
Of course, my mind struggles to understand what is happening. There was a process underway that it wanted to take credit for and take control of. I demoted my mind. I “switched allegiance,” as Michael said. It is only from the perspective of mind that this is a process in time. Realizing that what is true beyond form is the constant, unchanging awareness does not require a path, a doctrine or a disciplined structure. It only requires that my mind get the hell out of the way, like during dance.
Rishi described using the mind “as a thorn to dig out a thorn.” It’s a tool, only, and in the end, that tool must also dissolve.
And so it continues. The inflammation, the illness, the constant striving for solutions, the disordered thinking during flare ups, the awareness that watches the show. My mind is still obnoxiously active, but there is much less suffering. And sometimes there is complete stillness and peace. There is resistance and identity and the dissolution of resistance and identity. For the most part, I don’t talk about this with the people in my life because I wouldn’t know what to say. The Tao that can be spoken is not the eternal Tao, right?
How do you explain that the worst thing that ever happened to me brought me to the heart of what I had always wanted? It doesn’t make sense to people that the baseball bat could be a blessing. Unless this consciousness is also emerging through them (whenever they run or climb or swim or sit and their mind goes quiet.) Then they know this too.
My son came out to visit me over Christmas break this year. He’s thirteen now. We had a magnificent three weeks together. He observed that I was different. How do you explain this to a kid? You watch the Matrix movies, of course! When I introduced him to Michael, I said he was like “Morpheus,” and when I introduced him to Rishi, I said he was like “the Oracle.”
I’m Trinity. 😉
A couple of short videos that illustrate the shift in perspective:
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.
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.
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.