Love’s Not Time’s Fool

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

 

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

 

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

 

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

 

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

 

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

 

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

 

I set about trying to convince you of my experience, talking about my lab tests and very smart doctors and scientists who are experiencing and measuring the same phenomenon. I talked about the thousands of other people who are also healing this way.

 

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 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.

 

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.

 

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Whatever it Takes

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

 

Healing from CIRS can be like that.

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Moldies have hundreds of stories like this, each.

 

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

 

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

 

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

 

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

 

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

Joining the Worst Club on Earth

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

Mold Avoidance 101

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

The Toolkit

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Planning Your Mold Sabbatical

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

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

When to go

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

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

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

Where to go

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

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

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

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

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

Picking a car

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

Ford and Nissan make small cargo vans. These are good bets because they are all steel with rubber flooring and you can wash them down easily. It’s the upholstery and carpets that get hard to clean. So a car with the least amount of those is safer. Newer is also safer, despite the outgassing chemicals. Older cars are simply more likely to be moldy. If you are looking at a car, make sure it has never gotten wet inside, has no leaks or holes in the ceiling. Some Subarus, for example, have a drain that goes along the groove where the roof rack goes. Inexplicably, this drain travels down a pipe on the exterior of the car to empty out in the rear tire wells. This drain opening can constantly get clogged with debris, in which case water would come into the interior of the car. People won’t think to tell you things like that, so ask specifically.

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

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

Starter Shopping List

3 sets of day clothes

3 sets of pajamas including hats and socks

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

Raincoat or Froggy rain suit, doubles as spore jacket.

Down coat or vest

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

A main set of bedding

A backup set of bedding

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

A bedding box

A utility box for

Cookware, dishes and cutlery

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

2 passport belts to carry wallet/phone

A wonder wash machine

A Nina spin dryer

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

A Berkey travel water filter

A Buddy Heater and/or a hot water bottle

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

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

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

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

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

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

The Mental Health of CIRS

I recently wrote a post called “To the Person Who Thinks This Illness is in my Head.” I wanted to make it very clear that I am experiencing a physical medical phenomenon and to crush any suggestion that I am somehow manifesting this nightmare experience out of some fucked up Munchausen Syndrome desire to be sick. That is, unfortunately, a ready conclusion for people who have never heard of this illness. (Trust me, you will hear more about it. Do you remember when you first heard about Lyme disease?)

 

But in addressing the topic, I artificially honored the framework wherein mind is separate from body and assiduously avoided discussing what impact this illness has had on my mental health. Someone rightly commented on this on my blog. I am happy to talk about my mental health now. CIRS brought me to the edge of sanity. I got trained and licensed as a mental health clinician right before I got so sick I nearly lost my mind.

 

I am lucky. I don’t have a history of depression in my life or in my family. That is to say that the times in my life when I had previously experienced depression, it was tightly linked to some aspect of my life going to shit. It was circumstantial depression that evaporated when my life went in a better direction. I think that is happening again now.

 

There are different conceptual frameworks used to understand mental health around the world. Here in the west, we often see mental health challenges as brain-chemical imbalances that can be corrected with medication. In Asia and in many indigenous cultures throughout the world, there is a different conceptualization. Rather than isolating the brain from the rest of the body, they see a “body-mind” that has become imbalanced. In this view, behavioral differences are in the same category as physical symptoms.

 

A person might experience back pain, restriction of movement, anxiety and insomnia. They are all connected. What is the usefulness of putting mental symptoms in a separate basket from physical symptoms? There is a movement here in the US called Functional Medicine. It also takes this view of a connected body-mind and places all physical and behavioral symptoms into the same basket to understand the underlying issues. More on that later.

 

My body was truly ravaged by something horrible and was not functioning properly. There were several times in the course of recovery that I came very, very close to not being able to take care of myself. This is utterly terrifying for someone who reacts horrifically to molds and chemicals that other people cannot feel. Where is safe? If I become incapacitated, where do I go? The hospital? God, no. The swirling soup of super-microbes would take me down swiftly. I stayed at several friends’ houses that were a step better than where I had been previously, but were not safe enough for me to heal.

 

I had to have agency to figure this out for myself, because I was the only one who could feel what was making my body go haywire. The result of this predicament was that I had to keep moving. I moved a dozen times in 2016, all while I was really ill. I had to keep finding a different place to live that was slightly better than the last place, or I would slide downward into this quicksand of lack of agency. It was quite terrifying.

 

It was also crazy-making. Have you ever had someone wake you up every time you fell asleep? Just as you were drifting off, feeling safe and comfortable, something would jolt you awake? How many times could you endure that? How many nights in a row could you endure that before you lost your fucking mind?

 

Because the “adversary” in this scenario is a set of living organisms that GROWS and therefore changes day by day, how would you set about fighting them when you cannot see or smell or hear or taste or touch them? Yes, it is very much like being dropped into the middle of a horror film. The enemy is covering every surface of anything that might otherwise have given you comfort.

 

You know those days when you are at your wits end or are depressed and just want to stay in bed all day? What happens when your bed becomes your enemy? Where do you go then? Your mom’s house? What if that makes you sick? Your lover’s arms? Nope. What if you wheel around in a 360 degree circle and find nothing that you can take refuge in and look into your perceivable future and see no prospect of ever finding refuge?

 

Think you could stay sane?

 

For how long?

 

I can tell you that there were times when I was not sane. Perhaps you might understand why people decide they don’t want to be alive anymore if this seems like their life from now on.

 

I survived this nightmare, in part, because I turned into an animal. I lost my higher faculties. My body-mind was inflammed and imbalanced and unable to access my sense of spiritual connection or any subtle mental discernment. I fell apart over and over and over. But I found that I had this tenacious, animalistic drive towards survival. 

 

I can’t even catelogue how many days and weeks were defined by “You have GOT to fucking be kidding me” kinds of challenges. I am this sick and exhausted and strung out and I have to remove everything from my basement and have a yardsale? Really? I am reacting badly to my car and I have to take a 3 hour round trip in it while wearing a ventilator to look at a new car? It takes me days to recover and I have to do that THREE TIMES? I have no functioning immune system and I have to go out into the world by myself where there are microbes and super-toxins worse than what I’m dealing with? Really?

 

No matter what other tasks I had to accomplish, I always also had to figure out where I could sleep that night. I had to wash bedding and change locations almost daily in order to simply be able to sleep a few hours and not be in pain. Everyday I tried to inch myself forward towards greater health but many of those days required that I get sicker in order to get closer to the goal. I had to go through Herculean efforts to rent out my house and aquire a new car and all new belongings and to miniturize my life so that I could focus on only taking care of myself in an arid climate where I could still live outside.

 

Merge Waiting for Godot with the movie Brazil, add in The Birds and you’re getting there.

 

Yes, this illness was in my head. It would be in yours too.

 

I got deeply, deeply depressed. I lost my home, then my boyfriend, then I lost my job. Then my son said he didn’t want to stay with me anymore. (I didn’t blame him. I was awful to be around.) I got extremely isolated. My reality ripped into pieces.

 

When I finally achieved my goal of getting to New Mexico in a car I could camp in, I found that I was reacting to outside mold for the first time. (You have GOT to be fucking kidding me.) I didn’t know that happened. I wandered around New Mexico literally terrified of everything, all the time. I was afraid of touching the gas pump. Afraid of going into stores and buying new things and putting them into my car, where I slept. I knew there were super-toxins that could ruin my life for months if I touched them, eradicating months of my hard-won progress.

I was afraid of people because they were moldy and full of microbes, so I sought isolated campgrounds. Then I was afraid of single men, traveling alone in their campers. I got to a wilderness area where there had been a bear attack at a campground several years ago and a mountain lion sighting several weeks ago. More fear.

 

The point I want to make with all this is that anyone with a body-mind that has a predisposition to depression or anxiety or psychosis, IT WILL SHOW UP. No human being can go through this kind of physical shitstorm combined with mental pressure and come out OK.

 

To isolate one from the other isn’t helpful.

 

What is helpful is knowing the elements that are necessary to heal– sleep, nutrition, clean water and air, time, rest, emotional support, medication– heal both the body and mind at the same time, because the are the same thing.

 

The stigma that is attached to mental imbalances are unhelpful and shitty.

 

No matter where you go throughout the world, there is a relatively constant percentage of any population with schizophrenia. It’s about 1%. That is true through history too. I read a paper once that compared how the we in the US treat schizophrenia versus how a tribe in India and another tribe in Africa treat it. What I remember most about this study is that the voices that the people with schizophrenia heard were benevolent in India and Africa and malevolent here in the US. The researchers speculated that it was because the people in India and Africa were treated with dignity, trained as shamans and embraced as useful members of their respective communities.

 

In contrast, here the people who heard voices were stigmatized, medicated, isolated and idle.

 

After what we have been through, people with CIRS deserve to be treated with dignity. If we are depressed or anxious, we deserve to be treated with dignity. If we are psychotic, we deserve to be treated with dignity. If we are traumatized by this experience or any previous experience, we deserve to be treated with dignity.

 

Dignity is as crucial for healing as sleep, nutrition, clean water and air, time, rest, emotional support and medication.

 

With all of these factors, we can heal. Our body-minds can be restored and we can again be embraced as useful members of our communities.

 

(Metaphorically embraced. Don’t actually hug us. LMAO!)

 

PS– It is worthwhile to learn more about Functional Medicine if you are dealing with this or any other chronic illness or mental illness.

 

The Institute for Functional Medicine– What is Functional Medicine?

 

The Clevelend Clinic’s Department of Functional Medicine

 

Dr. Mark Hyman’s Ultra Wellness Center in Western Massachusetts