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.
Making the switch from using laundry machines to doing your own laundry by hand only happens when you have to. Everyone tries to get out of it. It seems daunting. Impossible. But it’s not.
I thought it was going well before I was unmasked. I washed my bedding from the moldy house and it seemed to be OK. I used laundry machines that I shared with my tenants. Sometimes I used laundromats.
Then, in June, I had a family come into my weekly rental and want to do laundry right when they got there. That was unusual. But they had come from camping somewhere up north. I had heard people’s horror stories about laundry machines going bad, but “I couldn’t disallow access to the laundry room for no good reason, could I?”
Yeah. That ruined my life for months.
I got a new washer and I ozoned the dryer, but it didn’t matter. The super-toxin these people introduced to my home was so cross-contaminating that soon everything I owned in a different house became contaminated. My car. Every item of bedding. It was so cross-contminating that if I brought a single contaminated item into a room, everything in that room became contaminated and anything that one of those secondary items touched became contaminated, and on and on.
This particular super-toxin, dubbed Mystery Toxin, is renowned for its delayed effect. So, it passes a sniff test and doesn’t reach screech-point til it has had an opportunity to accumulate in your body, sometimes by the middle of the night.
The night I realized I had been nailed with this, I lied down in my newly laundered bedding, which, at the time, was in a tent on a Thermarest on a porch. I nestled in and noticed that my heart was pounding really fast. I filed back through my day. Did I inadvertently have some caffeine during the afternoon? Fifteen minutes went by and it got more pronounced. Hmm. Did I inadvertently slam 5 espressos and not remember? Jesus Christ! A half-hour…. Holy Fuck! WHAT IS IN MY LAUNDRY!!!
I still didn’t get how this toxin behaved. Someone on the boards told me to conceptualize it as a fine powder, which was helpful. But I quickly contaminated everything. It was insanely sticky. It got all over everything. There was no sleeping. I had lots of time to troll the boards and find out how to identify this and fight it.
I was half-crazed from lack of sleep. Sleeping pills didn’t work. Benedryl didn’t work. Benzos, muscle relaxants, chinese herbs. Nothing worked. New bedding worked. But only for one night until it also got contaminated.
It took months and a carefully orchestrated escape with a new car and all new stuff to outrun it. If you have had an experience like this, washing your own laundry seems like the only sane option.
What You Need
I am just going to tell you step by step what I do because when I was figuring it out, I was insanely grateful to my mentors when they told me what to do because I was overwhelmed with other decisions to make and actions to take.
Before you start, check the weather to make sure you will have sun to dry your clothes and plan to start in the morning so they have time to dry.
First, test your water source. Ideally you want to have clean well water or spring water to wash your stuff. Town water is full of junk. If there’s a way to filter it, it will be easier on your immune system. The real risk is Cryptosporidium that has contaminated many water sources out west. Wash something– one item– and let it dry to see if you react to it. If the water is problematic, you will know after it evaporates and leaves its residue on your fabrics.
If your water is good to go, set up your washing station and fill your Wonderwash. It will take about 4 gallons plus clothes. Add about a tablespoon of Bronner’s castile soap and about a tablespoon of Downy Free and Gentle. (This is just how I do it…obviously modify as it works for you. You need more soap for harder water and less for softer water.) Then fill your 5 gallon rinse bucket with about 4 gallons of water and about ¼ cup of Downy Free and Gentle. Do not use this 5 gallon bucket for any other purpose that will pollute your laundry.
If you want hot water for whites or undies, let your clothes soak while you boil the water in your electric kettle. Once you have clothes, soap and water in the Wonderwash, close it up and crank it for 2 to 5 minutes. Make sure it’s not too full because it’s the air inside that bashes the clothes around and gets them clean.
Make sure your spin dryer has a level spot to sit and a downhill place to drain away. You will notice that the Nina spin dryer starts to spin when you snap the lid shut, but if the clothes are unbalanced, you have to open it again and reset the clothes so that they are centered. Protip: If you are strong enough, pick up the whole machine by the handle so that it is hanging during the start of the spin. It finds its center much faster when it doesn’t have to fight its own feet. It also puts less longterm pressure on the rubber bumpers that hold the basket. You want these bumpers to last. You will cry bitter tears when your spin dryer breaks, so baby it.
So, spin your washed clothes only sort-of-dry. Get the soapy water out and chuck them in the rinse bucket.
Another Protip: It’s better to split your load and spin twice than to overload your baby. So, take half your washload out, spin it, put it in the rinse bucket, then spin the other half. Do the same when you are spinning after a rinse. There will be heavy, wet blankets that fill the whole basket. Let them sit and drain by gravity for a while before you start to spin. The lighter the load, the easier it is on the machine.
Once your clothes are in the rinse bucket, swish them around thoroughly with your hand for a couple minutes. Let them sit if you can for a few minutes. Swish them again.
This time when you spin your half-loads dry, let them spin for minutes. After about 5 minutes, fabrics come out of this spinner amazingly dry and can dry in the sun in less than an hour in an arid climate on a sunny day.
While it’s spinning, set up your clothes lines. You want to find an orientation that faces the southern arc of the sun (in the northern hemisphere) and is downwind from nothing bad. Check the wind. Make sure there’s no campfire smoke or moldy buildings or RVs upwind from your clean laundry. If the line is too long, find a big branch with a Y in it and prop it up in the middle.
Once your rinsed clothes are spun dry, clip them to your clothesline. Don’t not clip them. You may have to wash them again if they fly off.
There are times when you may want to reuse water. My rule of thumb is to wash pajamas and bedding first. If the water isn’t too dirty, then you may be able to reuse it for items that don’t need to be as clean, like day clothes, car seat covers, cleaning cloths, etc.
Tips and Tricks
layers. It obviously helps if you are physically smaller and/or it is summer. (You may end up having to camp and handwash in the winter, but avoid starting your mold sabbatical in the fall, if at all possible. See Mold Sabbatical 101.)
You will need certain personality traits to succeed in healing from CIRS. If you don’t possess them yourself, you will have to either develop them or borrow them from an ally.
— A Buddhist/ Yogi–If you are not yet a Buddhist or a Yogi, you will become one because everytime you get attached to something (a blanket, a person, a child, a routine, place, a feeling) it will get slapped out of your hands over and over. It’s devastating only from a conventional mindframe, which we all start with. So…it’s devastating. Until it isn’t. Sarah Riley Mattson calls this “Enlightenment at gunpoint.”
— A Camper– Your health and future might literally hinge on you being able to buck up and pee in a jar, take bucket showers outside and use a campstove. If you have a history of doing this, you are at an advantage. If you don’t, find a guide and a shoulder to cry on.
— A Tomboy/Lumberjack– This is the antithesis of a glam girl or metrosexual. The first thing to go is your hairstyle. You have to wash your head every night before bed, so you will literally have bed head everyday from now until you are healthy again. This is the smallest of losses compared to what else you will face, but if you must grieve your hairstyle, get on with it. You will also likely have to wear clothes you hate from Walmart. There are many more losses to come around being removed from civilisation, so if you have a part of you that enjoys being away from civilisation already, and are not too invested in your image, you are at an advantage.
— A Rebel– If you give no fucks about what people think of you, you are at an advantage. Because you will point blank have to shut people down when they want to hug you or come see your space. You will have to dump water over your head in a parking lot. You have to always keep focused on the goal of your health and if people get offended, fuck them.
— Tenacious D– You do NOT need to be an optimist or recite positivity mantras to manifest vibrant health, although it might help. You are allowed to completely fall apart emotionally over and over. But you will notice that there is time that follows your crying jags. There’s a lot of time. And a lot to do. Just keep doing the next one thing you can do. There will be lots of moments when you have no idea what to do next. Or when you have an enormous pile of physical work you have to do while you feel like complete shit. Just. Keep. Moving.
— A Logistician– If you are the kind of person who can plan a trip while selling your house while managing several supplement and medication protocols, you are at an advantage. However, many people with CIRS struggle with brain fog. There is an impossible amount to organize. Get some help if you can.
— An Introvert– It helps a lot of you like your own company. You will spend a lot of time alone because you need to have that much control over your environmental microbiome. Unfortunately, other people who have CIRS can make you sick, so there’s no commune you can go to to heal from this. If you don’t mind solitude, you are at an advantage.
**Don’t do a mold sabbatical unless you have settled your affairs at home because you may not be able to return home without extreme disability due to increased reactivity once you’re detoxing. Be prepared to stay away until you have passed “through the eye of the needle.”
** Like everyone, you will do half measures until you learn the hard way. You will mistake your masked reactivity for an immune system that is functioning and try to get away with whatever shortcuts you can. (using laundromats, washing your bed clothes with your day clothes, etc.)This is normal and inevitable because at your more sensitive state, before passing through the eye of your needle, you will end up doing an unfathomable amount of work. You can only fathom it little by little.
I’m thinking it would be helpful for me to explain why this is so freaking hard.
Do you know anyone who has a shellfish allergy? Or is allergic to peanuts or beestings? After their first allergic reaction, they know they have an allergy. The second reaction is stronger and more dangerous. By the third reaction, they had better have an epipen or they could die.
Mold illness has a similar intensification reaction. The difference is that it’s not an allergy ( I have no IgE response to mold) and it usually doesn’t kill you. (It just makes you want to die.)
Basically, you find out the problem is mold, you clean up 90% of the mold, and the last 10 percent makes you just as sick as before. So you clean up 90% of that, and the last 10 percent makes you just as sick as before. It goes on like this literally ad infinitum, since there is no such thing as a mold free location.
So, tinier and tinier amounts of mold, or the chemicals they produce, create these big reactions. It’s crazy making.
Eventually, hopefully, you get to a small enough exposure that your immune system can start to bounce back. But it takes an EXTRAORDINARY amount of work to have that opportunity. It’s like passing through the eye of the needle. I don’t know if I am there yet, but I hope I am close.
That is why I am here in this wilderness area. It has the smallest possible burden on my immune system.
Why haven’t you heard of anyone else going through this? Most people don’t know that mold is a contributing factor in their chronic illness. It underlies chronic fatigue, M/E, Lyme disease, MS, fibromyalgia, and even cancer. But it’s so complex an issue, and the solution is so devastating and radical, that of course any sane person would try half measures and other solutions first. The catch 22 is, however, that the longer you stay and fight to get your life back, the sicker you get and the harder it is to recover. I had this in mind when I ejected from my life. I didn’t want mental sclerosis to be what kept me sick.
I have been struggling with my immune system for decades, making ground by transforming my lifestyle, my food and healthy habits. It is likely that all of my challenges were from mold, and if I can make it through the eye of this needle, I can live in a way that healthier from now on.
I will obviously keep you posted. Thanks for listening.
From the prospective of someone with a strong constitution, it can seem like people with chronic illnesses are whiners. I’d like to address some of the myths you might have about people like me.
But first, I would like to extend myself to imagine why you have the perspective you have.
I imagine that your body has endured all sorts of illnesses and breaks and bruises and you overcame them all. I imagine that you feel confident in your body’s ability to heal, confident enough that if you feel ill, you are sure that an aspirin, a glass of water and a good night’s sleep will have you feeling good again in the morning. You rely on that, even perhaps take it for granted. I’m guessing that you have even gone through something really hard, like a shattered bone or overcoming breast cancer. In that case, doctors helped you. They knew what to do and they fixed it. And it feels very clear to you that they deserve your trust and they deserve to have that confidence they have.
Further, I imagine that you perhaps have a beloved pet that can sleep right in your bed with you and you feel fine. I imagine that you can put any type of cream or sunscreen on your skin and it doesn’t burn. I imagine that your disposable income can be set aside for things like vacations, eating out, alcohol, your childrens’ education and your 401K instead of on medical attention and supplements.
I imagine that you get up every morning and work hard, even if you don’t feel good. I imagine that you provide for your family and that it is not easy to do that in today’s economy. I can understand that you would like every one to pull their own weight so that your wages don’t feel garnished in order to benefit people who aren’t working.
So let’s start with that one.
Myth #1–We are malingerers or are lazy. Let me assure you, most people who have chronic illnesses work our asses off. When I first got ill, it was a challenge to just get to the bathroom. In the early months, before my diagnosis, it was impossible for me to prepare a meal, eat it and then clean up without having to lie down once or twice. The unpaid work of daily survival– laundry, shopping, paying bills– was more than I could handle. But I pushed myself everyday to the absolute limit of what I could handle, and found time to research what the hell was wrong with me.
This is the point I want to get across. In addition to the normal daily tasks of living, people with chronic illnesses must find extra time– the time that you are relaxing with your family– to research and implement solutions to the predicament we are in. There is never a day off.
In my case, the diagnosis was mold illness. People with mold illness work more than you can ever possibly imagine. As it became clear to me what the problem was, the solution is to wash everything every day. As you do this, you get more and more sensitive to smaller and smaller amounts of mold and mycotoxins until your system has a chance to rebound. This process can take a year or two.
Have you ever had to hand wash your laundry? I had to stop using washing machines months ago because they make my system go haywire. When I am able to wear clothes or pajamas more than once, I am thrilled. Less laundry to do by hand. Everytime I go into town, I not only have to wash my clothes, I have to deep clean my car. Every. Time. Town is 90 minutes away, so I try to go only once a week. Once I got my checkbook out to pay a bill and got spores all over me. I had to change clothes and wash them by hand. It’s winter, so that includes several layers. I have to wash bedding once or twice a week. It’s a workout every time.
My point is, you can’t even wrap your mind around the physical labor I have to do to simply stay out of physical pain. I am a hard worker, but I have never worked so hard while feeling so awful as I have this past year. That is saying something because right before I got sick, I was working my ass off getting my masters in Social Work as a single mom. I finished with a 3.94 GPA, got my degree, got my license, got a job with benefits and less than a month later, I got really sick. The reason I have made progress on my health is that I am tenacious as hell and I work my ass off. But not for money.
Myth #2 We are hoping to benefit financially from a disability. Unfortunately, the rule for people with long term illness, especially mold illness, is total financial devastation. It’s not hard to imagine why. When daily survival is more than you can manage, taking on the responsibilty of a job is out of the question. Inevitably, the meager benefit that Social Security Disability Income (SSDI) provides may keep people from starving to death, but it is far from being enough to create or restore health.
In my case, I have not yet availed myself of that benefit. It’s really hard to get and I frankly have just not even had the time to apply. I am living off rental income from a house I renovated before I went back to grad school. Plus my parents and friends have helped me as much as they can. Plus I am living cheaply.
How cheaply? Since my illness is environmental in nature, the “cure” is environmental too. I am living outside in a wilderness area. No cell service, no flush toilets, no internet, no electricity, no radio waves. I am camping. That’s how cheaply I am living. I am still not making ends meet because I need medications and tests. I already bottomed out my home equity and cashed in my 401K. Do I think you owe me? No, I don’t. But if society kicks in for buying me food, I will take the help, because I fucking need the help.
Like a lot of people with this illness, for a long time, I was too sick to get myself anywhere. I couldn’t travel. As soon as I could, I used my bootstraps to get my ass to the wilderness. It’s working. I absolutely have to stay here if I want to have any hope of recovering. I hope I don’t lose my house because I got sick, but that happens everyday in America. Should it?
Myth #3 Sick people like attention. I’m not going to say that’s not true for some people. But if you think that the 13 months of hell I have just been through feels worthwhile so that I can whine about it in this blog post, you are mistaken. You will find an inverse correlation between when shit went south in my life and when I posted on Facebook, for example.
Over the last year, I didn’t tweet about it when I sprained my ankle, broke my tooth or fell down the stairs and messed up my shoulder. I didn’t even mention those to my doctor. I didn’t post it on Facebook the day I experienced neurological immobilization from my contaminated car followed by a panic attack in front of a complete stranger, then a second one in front of my dad, my son and my foster son. I didn’t broadcast it when my remediation didn’t work or when I realized I needed to leave Maine because I woke up covered in frost. Or, once I reached “sunny” New Mexico, when I tried to sleep in my hammock in horizontal 30 mph wind and sleet because my car got contaminated. Or when my bedding got so contaminated, washing it 4 times (by hand) didn’t work and I had to throw it out. There are a hundred more stories that I never mentioned to anyone.
I want to make a distinction between the “Poor me! Take care of me!” kind of attention I imagine you detest (so do I) and the “staying connected to life” kind of attention I really do need more of.
I am lucky. So lucky. I have dozens of people who love me and are pulling for me. Not everybody has that. But despite all that love, I have been deeply alone. This is an isolating illness. Being around people can make you sick. I lost my home, my job, my relationship, my community and time with my 12 year old son. I missed half of his 5th grade and am in the middle of missing his entire 6th grade. And incidentally, the single most compelling thought that has cemented my commitment to staying alive is that he might have to endure this genetically-informed illness someday. He will not have to endure this level of psychic solitude if, God forbid, he ever has a similar experience.
I have felt tethered to my former self only by the thinnest, most diaphanous thread. A single corn silk. I have felt trapped inside a body that flares up at the most minute toxin. I have felt gratitude at being able to connect online with the thousands of other people who are experiencing a similar hell, but that is tempered by the scary desperation they also feel. I have had to limit my participation on the forums to safeguard my own mental health.
So maybe this myth is partially true. I do need attention from people who love me. I need people to check in and reach out and take a minute to remind me that I am still important to them in their lives that have continued just fine after the death of my former identity.
Myth #4– Chronic Illnesses aren’t “measurable.”
While it can be difficult to find which biometric markers correspond with a person’s unique symptoms and it can be REALLY hard to find a medical practitioner who knows what to measure, this illness is clearly medically determinable. That means that once you know which lab tests to order, you can clearly measure progress and follow clear treatment steps to improve inflammatory markers. The treatment works!
When you descend down the rabbit hole of this kind of illness, you get acquainted with lots of people who have it worse than you do. There is a constant reminder of the possibility of losing the struggle. People become “locked in” inside their bodies, unable to do anything other than lie in a dark room 23.5 hours a day. And if that room is toxic to them, too bad. Happens all the time.
What is really going on. I would like to remind you that there is a long history of the medical establishment concluding that anything they can’t explain is “in your head.” This is especially true when the patient is female. You might be interested in this excellent TED talk by Jen Brea on this very topic.
In the case of mold illness, the diagnosis— and the treatment— are relatively new (30 years old). That’s because the illness itself is new. It is just beyond the horizon to most medical practitioners. Luckily, I was able to get connected to one of the handful of practitioners who knew how to treat it, and I am getting better.
Let me restate that. It’s not in my head because there is solid medical science that understands what happened to me and the proof is that the treatment is working for me and for thousands of others. The first doctor I saw, however, thought it was in my head because he didn’t know about this illness yet. He was a generalist PCP. It was beyond his horizon. Of course it was.
You know why this illness was just beyond the conventional horizon? Besides being new, it is insanely complex and parts of it are beyond what current science allows for. One brilliant doctor has determined which five indoor molds are the most dangerous and that about 24% of the population is genetically vulnerable to them.
They are also aware that each these molds can create several different chemical byproducts, mycotoxins, depending on what other molds they are competing with in the same colony. Some of these mycotoxins are sticky, some are easy to remove. Some are benign, some will make you pass out. The variety of internal reactions that people have is also dizzying. People can have different reactions to the same toxin. The handful of symptoms that I have experienced in the last 24 hours? Headache, sore lungs, sore throat, kidney pain (both sharp and dull,) neurological tremors, eye floaters, itching, insomnia. They all go away (except for the floaters) when I get away from mold. So I’m constantly trying to get away from mold.
How can it be real when you haven’t heard about it before?
Because when people get sick in this particular way, they disappear. Every last scrap of energy and money for the survivor (and often their families) is reserved for survival. But there have been efforts to remember the Millions who are Missing. Here’s a documentary about how sensitive people disappear from society.
If you haven’t been personally touched by this, it can sound unfathomable. Here’s more media that can help you fathom it, if you care to. Unfortunately, because it’s a predictable outcome of environmental damage, you will hear about it more and more in the coming decades.
Science is helpful. Except when it becomes too convinced of its own efficacy.
Since World War 2, there have been tens of thousands of different chemicals released into our environment. Some of them are tested for safety. Think, however, of the permutations of chemical interactions between each of them. Is anyone tracking that? No. It’s quite a Pandora’s Box.
Species extinction, autism, Alzheimer’s, autoimmune disorders, cancer, colony collapse disorder. It will become clear in the coming decades what all these issues, and others, have in common with the illness that has afflicted me. It was over a decade ago that the New England Journal of Medicine declared that this current generation of American children is likely to live shorter, sicker lives that their parents.
We, the sensitive ones, are the canaries in our collective coal mine. Science has yet not figured out how to measure all the ways that humans have fouled our nest. We canaries may be able to feel it before scientists have figured out how to measure it. We are valuable to society because of this very fact. If a scientist has not figured out how to measure a problem, it most certainly does not mean it is in our heads.
For the 76% of people who seem to be largely unaffected by mold, congratulations. I am sincerely happy for you and hope to join your ranks someday. But just as I was able to extend myself to try to understand your perspective at the beginning of this essay, I hope you will make an effort not to conflate your experience with “Reality” (with a big R.)
Progress will only be made with acknowledging the multiplicity of human experience. Thanks for listening.
Dear Modern Civilization,
I know you have felt this coming on, but it is clear to me that we need to spend some time apart. It’s not you, it’s me. Well, no, it’s almost totally you. It’s just that I can finally see you clearly.
I have developed the most wretched superpower: I can feel all your toxicity. It’s like becoming an X-man. Legions of micro-organisms have mutated to adapt to the polluted environment. There are about 24% of humans who, like me, are genetically susceptible to biotoxins (lyme and its co-infections, mold, ciguatera and pfiesteria.) The biotoxins produced by micro-organisms are becoming more toxic in response to burgeoning chemicals in our environment. Anyone can get sick from them, it’s just that one in four of us struggle to heal. The biotoxin burden is in addition to the toxic burden from the chemicals themselves. One study found and average of 232 chemicals in the umbilical cord blood of newborn babies in the US.
So I’m so grateful that scientists have finally found a treatment that works for people like me who get really sick from biotoxins, but unfortunately a side effect of the treatment is an extreme sensitivity to chemicals that renders just about everywhere unsafe. I need to find somewhere that doesn’t have chemicals or mold, now that I am so hypersensitive. That’s why I need to leave you.
I have really always known something wasn’t right. But you are so cozy. Truth be told, I’m scared to death to leave you. I haven’t ever been on my own without hot showers and electricity for very long. I’m pretty rugged, as girls go. I have hiked the Himalayas, kayaked in fjords and camped by myself in super-remote locations. But I always got warm and clean afterwards. I always had a credit card and a plane ticket to somewhere.
I really love flush toilets. And the internet! OMG, I can’t even imagine going without that for very long. I have loved having my own private transportation vehicle that I can use day or night in all kinds of weather and the limitless ribbons of asphalt laid out for my travelling pleasure. I know it is only the tiniest sliver of evolutionary time that a single female human would be able to own one of these and hit the road.
I am aware that I am incredibly fortunate to have been born during this era and in this country, with all the luxuries that are considered normal. I really did enjoy it…even though I have always known there was something wrong with it. I have never really bought my own rationalizations and have despaired at my inability to live with integrity of what I knew to be true: living this way is unsustainable.
I have tried, really tried, to be more mainstream so that I could be happier with you. But I can’t rejoice in an expanding economy. I am horrified that humans are causing the sixth mass species extinction and that we are currently breezing right past the climate change tipping point. My meager attempts to mitigate the damage I cause just by being a modern American are inadequate. This I have always known. Recycling? CSA? Efficiency appliances? Come on now.
Yet I am still a human animal. I am fiercely and irrationally interested in the preservation of my son’s life, no matter what the cost. I am concerned with social justice because my fellow humans deserve dignity and safety and a fighting chance. But there are so many of us. I know. The non-humans deserve a shot too.
I have always known that indigenous people who live within an ecosystem without dominating it have a lot to teach us. What we are doing is clearly not going to continue for much longer. One hundred years, maybe? A blip. When I live my rural little life in coastal Maine, far away from malls and highways, I can almost forget that our clothing swaps and organic potlucks are not the norm.
When I come out into the mainstream, onto the interstate corridors lined with strip malls and franchises, I feel sick. Not only because I really am physically sick, but because the conventional opinion continues to be that this is ….progress. This is the progress of lemmings.
So here it is. There is always a leading edge, where the wave just starts to tip over and break. Likewise, canaries feel the toxic breeze first. Those of us with CIRS have developed the canary superpower of perceiving toxins that others can’t feel. What will follow in the coming decades is an avalanche of data to show that all of our major epidemics– Alzheimer’s Disease, Autism, Diabetes, Cancer and chronic illnesses–are being caused by or correlated with the complex toxicity in our modern environment.
Anyway, I need a break from you. Believe me, I have tried every option that would allow me to stay with you and with my son. Now I’m going to drive my personal transport vehicle to the very edge of you and see what the air feels like to breathe there. I found a place to camp in the high desert that has a flush toilet, a hot shower and wifi, but no mold and almost no chemicals. I hope it works to allow my system to calm down and become less sensitive. If it doesn’t work, (note from the future: it didn’t work,) and going the edge of you isn’t going far enough, I will have to figure out how to go feral out into the wilderness.
Yesterday I found myself walking around a neighborhood north of Cincinnati, Ohio, tears rolling down my cheeks as my eyes passed over the 1970s ranches. Eight out of 10 of them has Trump signs in their front lawns. I was walking to warm up, since it was not quite 50F, and I am still living outside on November 8th, 2016. I was also walking just to ground myself in the rhythm of walking and breathing. The surreal news that Trump had just won the election had started to feel real as I turned onto a road that wasn’t there when I was a kid and was lined with Tudor style McMansions.
There were no weeds anywhere on the lush, green lawns framed by the same bland landscaping in front of each house. Each house is full of consumer goods, electronics and earnest, slightly overweight white mid-western humans who feel deeply that this “way of life” is their God-given right. One closed their automatic garage door, sealing in a solid-packed wall of bright plastic belongings next to their shiny SUV. Another pushed one of those machines along that spun Scotts fertilizer pellets out onto the lawn in an even pattern.
I do not belong here.
To be fair, I have felt like I don’t belong here for decades before this horrendous day. My parents moved here 40 years ago when I was 6. I have also had that sense of blanket resistance, that “this ain’t it” feeling, in many other locations and eras in my life. But never have I felt it more acutely than I do here now in Ohio. There are no health food stores, but there are fifty different fast food options within a mile from home.
Never have I been this nauseous at the thought that a campaign of hatred, fear and misinformation could lead MOST of the people around me to somehow rejoice that an incompetent, narcissistic demagogue had “saved” the country last night.
But for this to happen while I am still sick, while I have been squeezed out of my own life like toothpaste out of a tube….it is simply more than I can process. I am crying for all the people, including children, who already feel less safe just walking through our society. I am crying for our country’s daughters who did NOT see a woman get elected (even though she won the popular vote,) but instead saw a man brag about grabbing women by the pussy and then, weeks later, ascend to the most powerful job in the world anyway.
I’m crying because all these perfect houses and lawns are poisoning the Earth and poisoning me. I have an “environmental illness.” That means, in a nutshell, that my body has become so allergic to modern human civilization that I must leave it. I am heading to a barren, secluded homestead in New Mexico that is surrounded by nothingness. It is dry, at 4000 feet altitude and 26 miles away from the nearest small town, which is in turn 150 miles away from the nearest city.
I have CIRS, Chronic Inflammatory Response Syndrome. Mold illness. Eleven months ago I had just moved into a moldy house and had just started a job in a moldy agency. It was a matter of weeks before I collapsed and spent months writhing in pain and unable to sleep. I was terrified when my doctors told me they had no idea what was wrong with me.
That’s when the structure of my life started to squeeze me out like a tube of toothpaste. I had to leave that house that my son and I shared with my boyfriend and leave most of our belongings behind. My boyfriend didn’t keep in touch. Then went what was left of my savings, then I lost my job. I tried to move back into my own house, but had to go through a grueling, expensive remediation before I gave up on it. (Thankfully, the boyfriend came back and helped.) After having spent all summer sleeping outside and making progress on my health, it got too cold in Maine. When I stay indoors, I get sicker. So I had to leave my state and leave my son behind. The final touch was that I needed to buy a different car and get all new clothing and bedding. My identity has shattered like a mirror dropped from the roof onto concrete.
Now when I look down at myself, I see someone else’s Walmart clothes as I walk though this mid-Western suburb full of Trump signs in a country that will soon be run by President Trump. I squint into the sun.
Who the hell am I now?
It’s true, I don’t belong here. But I’m also terrified to leave. I feel nurtured and cozy and safe here. These feelings are intertwined with all my judgment and malaise. At least the crappy I feel now is familiar.
Somehow, fleeing Trump’s America dissolves some of my ambivalence if I have to do it. But there is still terror. This illness requires people to jump off cliffs into the unknown while we are sick. Over and over.
Anyway, I have no choice.