Lots of my older friends and my parents are now having to contend with a new fear of the microbial world due to the Coronavirus pandemic. Having lived for years myself with decontamination protocols that have been necessary because of an impaired immune system, I thought I would share some ideas for how to deprive this virus of the opportunity in your body.
There’s a meme on Twitter going around that says “Wash your hands like you are cooking for Ruth Bader Ginsberg.” Bring your attention to it like your life and all the lives of people you love depends on it. Because that’s true now.
Another example is how careful you are in handling raw meat (or hot peppers!) in your kitchen. You become very aware of what your knife has touched and that it needs to be washed before slicing that apple you pop into your mouth.
Shining your truest light is the best health-elixir you have. That happens when you can quiet the mind and feel connected. Then the sun shines from everywhere.
Yesterday I went to the center where I meet with my spiritual community every Sunday. This has been a place of exquisite refuge for me. I have built each week around having the energy and resources to get here because it has become so important to my sanity. I was beyond thrilled to find this place, because not only was it a setting where I was able to drop my mind and show up fearlessly as the deepest part of my self that is untouched by the drama and trauma of a human life, but the building was good! I felt good in this building after they had carefully and lovingly restored it 5 years ago for being a sanctuary for yoga, meditation and wholeness. It has been such an important part of creating a new, meaningful life in this new location that I counted it as one of the main reasons to stay here.
I know better than to get attached to things.
About six weeks ago, I alerted the facilitators that there was mold growing in the area where they have plants and a decorative bamboo water fountain. I mentioned it 2 or 3 weeks in a row. Then I left on a trip and missed two Sundays.
The trip was intense. I had a lot to process from going to see my family. I am stable enough in my recovery that I trust that I can recover from big hits. That means I know I will get inflamed and exhausted and sick by going to the East Coast, but I also trust that I am able to function while feeling crappy and drug myself to sleep. It is hard to process emotions when you feel like crap. Crucially, I have a safe place to come back to.
I was looking forward to having an opportunity to process Sunday morning. I always feel better Sunday evenings.
When I walked in, I had forgotten about the mold. Within seconds, I could tell it had bloomed. Not only was the smell overwhelming, but it was obvious that this mold was a “slammer.” That means hours or even days of recovering from minutes of exposure. I felt dizzy, my face and eyes started to burn, my lungs hurt, my kidneys flared up and I was shaken. It was like walking into a room with a diesel engine running.
I knew I should leave, but I was already contaminated and wasn’t willing to just pop this building onto my “No Go” list without an effort to solve this.
The manager happened to be there on a Sunday, so I knocked on his door. He saw that I was ashen and on the brink of tears and asked me if I wanted to sit down. He said he had gotten my messages and had examined the area with the fountain with “someone who was mold sensitive” but they couldn’t smell anything. I found that amazing.
I told him that I suspected that it was the decorative bamboo fountain that was rotting, and would he be willing to remove it? He hesitated. Hmm. “Its a choice between aesthetics and health,” I said. He said “Yes, but for just one person… what would you do if you were in my position?” A skillful question.
“I would remove it.” I said. “I may be able to feel it when others can not, but make no mistake that it is affecting everyone.”
He was compassionate and reasonable and we agreed on a plan for me to purchase a new fountain and coordinate installing it. He conveyed that of course he wanted this space to feel safe for all people who use it.
I stayed when I should not have. I stayed in the corner farthest away from the mold colony and focused on calming my mind. A friend opened the door near me as a way to offer me fresh air.
That was kind, I thought, but I knew that if the air flow was coming into the room, it would help and if it was flowing out of the room, it would be flushing the mold toxin towards me and I would have to leave immediately. I walked to the door to check. It was a 50-50 chance.
It was flowing in and smelled fresh. I decided to stay as long as I could.
What followed was a profound emotional processing. Instead of processing the trip, which was backed up inside my tired body, I had to process something else. Bigger.
I was overwhelmed by the accumulated trauma of losing my safe spaces over and over in the last 3 years.
The very first one was when I was so sick I was bedridden and realized I had to muster the focus and energy to move out of a moldy house. When I succeeded in activating this clear knowing of what was needed, I got the opposite of support. I got abandonment. If my diagnosis had been MS or cancer instead of mold illness, the response from my community would have been vastly different.
When your experiences do not correspond with “consensual reality” comprised of the agreed upon perceptions of the people in the cultural framework that surrounds you, you have the human experience of “marginalization.” Marginalized people are everywhere. They are actually most of us, when you add up all the margins together. “Reality” reveals itself as just a big Matrix everyone is jacking into.
When the kind and compassionate facility manager balked at the inconvenience of removing an aesthetic element when it meant I would never again be able to come to this spiritual sanctuary, it lit a stick of dynamite that blew open the trauma I had not processed.
So process it, I did. (My mother said “Do not waste this suffering!”)
I sobbed in a crowded room. I watched the waves of psychic pain and the memories of terror as I watched home after home after home become unsafe for me. I recalled the moment when my father’s house became unsafe, after luxuriating in the archetype of protection and stabilizing love for weeks, the neighbors fired up a “fake smoke” machine as part of their Halloween display and my body went haywire from the chemicals. I could not even be there, when all I wanted was to cry on my father’s lap, I had to flee. Again.
So I didn’t flee this time. I watched my mind and I cried. I knew when I left this precious spiritual sanctuary, I would not know if and when I could return to this place.
I did leave early. I asked a friend who lived nearby if I could use her shower. I have long stopped carrying a change of clothes in my car in case of contamination. It is so rare that I come across “slammers.” But I happened to have a change of clothes on this day.
Allowing the suffering to overwhelm me while grounding myself in the stillness and joy that is always there underneath the maelstrom is the core of the spiritual process that is overtaking me. The bigger the maelstrom, the more potent the stillness. With this process, the historical trauma that was locked inside this hyper-sensitive body gets ventilated once and for all. Never to return.
A some point, after relinquishing control over the direction my life was going, I was brought to this place. It’s a clean place, an old adobe guesthouse that I am able to live inside. After being forced to camp over two high desert winters, I relish having hot water, my own bathroom, a couch and a woodstove. I can be cozy and warm again, finally.
Not long after moving in, a book came into my hands. The person who handed it to me, Ellen, deeply needed to understand the contents and wanted my help. The book was “The End of Alzheimer’s– The First Program to Prevent and Reverse Cognitive Decline,” by Dr. Dale Bredesen. The program it laid out was called “The Bredesen Protocol.”
I devoured this book and became really excited when I realized 3 things:
Dr. Bredesen advocates everyone getting a “Cognoscopy” by the age of 50, much like getting a colonoscopy. (For women, this should be done before menopause, which happened for me early, at 46.) The reasoning behind this is that early detection of metabolic and hormonal imbalances that lead to Alzheimer’s can be rectified before they even lead to symptoms of cognitive decline. Since there is a “point of no return” where this protocol can NOT reverse decline, it’s much cheaper and smarter to prevent the decline in the first place.
I am sold on Bredesen’s Approach. Learn more here and here and here. In a nutshell, through his career as a conventional medicine researcher at UCLA, Dr. Bredesen identified 6 types of Alzheimer’s dementia: Hot, Sweet, Cold, Toxic, Vascular and Traumatic. He has applied the fundamentals of Functional Medicine to identify causes of inflammation (infections, autoimmune issues, allergies, etc.), causes of what is essentially diabetes of the brain, “atrophic” factors like low Vit D and low hormone levels that create a “synoclastic” environment in the brain where synapses can’t regenerate, toxins from organic and inorganic chemicals and biotoxins from lyme or mycotoxins, the impacts of vascular disease and head injury on the brain’s ability to heal and regenerate. Through addressing each patients individual challenges, Dr Bredesen has created a targeted, individualized program that works to correct up to 60 imbalances. The reason conventional medicine has failed so abysmally at curing Alzheimer’s is that they are looking for one, single enormous payday through a pharmaceutical monotherapy. SO 20th century.
Over the course of 12 months, I participated as Ellen tried to implement the Bredesen Protocol on her own. She got a little guidance from a Functional Medicine doctor who had heard of the program, but didn’t know how to implement it. She got a smattering of lab tests done and followed the advice on changing her diet, but after plateauing, she began to decline again.
That’s when I decided to officially sign up for the Bredesen Protocol training through the Institute for Functional Medicine. They just started offering the training online and the price to enroll for non-medical practitioners is $1550.
While it has been fascinating learning the clinical approach to this illness, I have found that actually connecting to practitioners who can help us really implement this protocol has been a huge challenge. There are not that many practitioners yet who have taken the training.
We live in a very remote area in the Southwest. We couldn’t even get a list of certified practitioners who were physically in our region (within a 6 hour drive) without signing up for the AHNP program, which just launched, and is clearly still in Beta testing phase. This company has not invested in a User Interface Specialist and seems unaware that it is set up for doctors, but not for patients.
From a patient’s point of view, the logistical tasks of setting up appointments in different cities while cognitively impaired is an impenetrable barrier to entry for most people. These are the steps the patient is required to take AFTER signing up for the AHNP program;
While the AHNP program advises that you can go ahead and get your labwork done before even choosing your doctor, this presupposes that all phlebotomists who work at all LabCorp locations know how to process all Bredesen and Shoemaker labs accurately.
After 3 years of having Labcorp process my CIRS-Shoemaker labs, it is clear that the only labs that do it correctly are the ones that are in constant contact with Shoemaker practitioners. These labs need to be trained on how to process things like TGFB-1 and c4a. You can guarantee they will get it wrong on the first try. The same is true for MRIs.
I was exceedingly lucky that early on in my illness, I got connected with Peg DiTulio, FNP. She is extremely well organized and has a cracker-jack team of administrative assistants. She is also Bredesen trained. But she is on the other side of the country, in New Hampshire, and requires an in-person visit to begin care. Having had her as my first functional medicine provider, however, the bar got set high for what I could expect.
We finally got access to the list of five doctors in our region after joining the AHNP program. We reached out to one practitioner on the list and didn’t hear back for a week. Then we noticed some unfavorable reviews on Google. Two other practitioners appeared from their websites to be “anti-aging” enthusiasts, but didn’t mention the Bredesen Protocol. A fourth seemed young and eager, but had a Google Voice-forwarded phone number and a voice message that appeared to be him talking about himself in the 3rd person, and encouraging us to leave a message. Um…nah.
We wanted an actual doctor’s office with an actual receptionist who answered the phone. We found The Merritt Wellness Center. They were not MDs and therefore had no prescribing rights and would not deign to deal with insurance. It was out-of-pocket or out-of-luck. We spoke with their practice manager, Patrick, about the details of the program. It seemed promising, but also complicated. Picking the doctor was just the beginning!
They have a comprehensive program that included visits with a DOM (Doctor of Oriental Medicine,) a nutritionist and a health coach. First we wanted to know if we could replace their health coach with myself, since I am a health coach, social worker, CIRS survivor AND I’m getting certified in the Bredesen Protocol myself. Nope. We asked if we could choose our own source of supplements since I can get them wholesale. Nope.
OK. Next we learned that we can’t just join their Bredesen Protocol, we need to do a preliminary program, called a NeuroCheck, to determine eligibility for the Bredesen Program. This cost $750 plus another $600 for the special MRI. But still, I am optimistic, because they were one of the first centers in the country to offer Bredesen’s ReCODE (REversal of COgnitive DEcline) program. They already have a track record of success and have 25 other people engaged in this very process right now. Plus, it is smart that they require only an initial commitment to a single appointment to review the MRI and CNS Vitalsigns test. We get to meet them and see how we like them. They get to meet us and assess whether or not we are up for the formidable task of implementing this exacting program over the course of one year.
We were well into the program before realizing that while the practitioners can diagnose and treat on the basis of the ReCode Report, they don’t have access to it unless the patient is signed up through AHNP. This ReCode Report is actually proprietary software developed by Dr. Bredesen himself to synthesize an enormous volume of lab data into usable form. The doctors can’t see it unless the patient has an account with AHNP and chooses the doctor on the AHNP platform.
So far, this has required a lot of woman-hours to just get to the starting gate. I am so thoroughly impressed with the Bredesen Training program through IFM
and the clinical basis for this healing program that I am convinced this will work to restore Ellen’s cognitive functioning. I also have personal and very compelling first-hand experience of recovering my own health (mostly) because I followed the Shoemaker Protocol. (This continues to require that I live in a low humidity area, sleep on a camping mattress and keep hyper-clean, for the moment.)
All told, this program might cost a patient as much as $15,000 for one year. Out. Of. Pocket. But for the price of a car, you could get your life back. It’s a no-brainer, no pun intended. It seems like a daunting amount of money until I think of the $60K-$80K that CIRS has cost me over the last 3 years (not counting lost wages.) There is nothing more expensive than NOT getting connected to the people who can really help you.
I will keep you posted on this amazing process.
I have been back in Maine almost four months now. I was describing it to Stevan yesterday as feeling like being on a prolonged SCUBA dive. Apart from the dramatic physical and emotional ups and downs, it feels like I am constantly under pressure– like I am literally living inside a soupy substance that weighs on me from all sides and makes everything take longer. It’s exhausting.
This morning is typical. Since both my cargo trailer and the back of my truck became intolerable a month or so ago, I have simply given up on finding a good place to sleep. I just sleep inside my house every night now. It’s wonderful that I am able to do this and I am still deeply enjoying being in a real bed again, with cotton sheets and pillows after 2 years of cots and hammocks and sleeping bags. The downside is that I am unable to fall asleep because I react to my bedding, so I take Ambien. Too much Ambien. I wake up feeling unrested and achy. I also react to my own sweat because my body is constantly processing mold, so I literally sleep in a different spot in my bed every night. I have “events” like becoming reactive to my pillow or to the room, and then spend time wrestling my environment back “below tolerance.” If I can sleep at all, even with drugs, it’s a win. It’s better than feeling like I’m going to die or like I need to leave tomorrow. That was common in the first 2 months.
I yield mentally, mostly. I don’t fight it in my mind. I just wash and relax. I decided to prioritize routine and comfort over pristine environment. For now.
I can usually pull out of the yucky-morning-feeling. I drink caffeine, which I wasn’t always able to do. There are ways in which the healing process continued when I returned here (Adrenals! Woot woot!). But there are other ways that I slid backwards. I am constantly inflamed. My lower abdomen, in particular. My bladder constantly hurts, my digestion is off. I feel kind of buzzed all the time. Swollen. It’s a familiar pattern of pain and malfunction. I struggled with it the whole 17 years I lived here.
Mentally and emotionally, the re-entry to my hometown was intense. At first I felt like I was walking through a dream. I felt like a hologram walking through my memories of each street in my town that I’d traveled a hundred times. Many of my relationships dissolved. For a while, I concluded that those people who reached out to me or stayed in touch with me were “real friends,” but I now think that is too restrictive of a definition. It was, truly, the many people who reached out to me. But there is also a quiet way in which many other people who are not in regular contact with me can fall right into a space of connection and gentle care. My dear friends Bill and Larkspur come to mind. People who are simply willing to relate. And what can I offer as a friend? The parameters I had were unnecessary, and so they dissolve.
I move through the world differently now. I’m not so reactive. I don’t preach. I feel lucky to have really basic things, like a flush toilet and a cup of tea. I feel the precariousness of any mental perspective– that the opposite is always true. I developed a very strong aversion for spending time on social media witnessing people’s mental perspectives. I hesitate deeply to put my own out into the world. I am not totally sure why I am writing this.
I came back here for my son. More specifically, I came back here because I had to prove to myself that I did everything I could to get back with my son, to assuage a yawning guilt and shame I feel about giving birth to a child and then leaving him. It’s a primal, visceral ache that might never go away.
I had to come back to learn that this ache is my ache, and not my son’s. Whatever pain he endured when he was 11, and I disappeared from his life because of this illness…it’s buried now. He has compartmentalized it, as children do. As we all do. Only later in our adult life might we bear witness to the patterns of conditioning that formed around these compartments in our psyches. We are protected from pain–thank god– and then burls grow around it, like a tree swallowing an old barbed wire fence. We remain safe. Until the conditioned patterns that kept us safe as children, start to keep us from feeling alive as adults.
Maybe someday my son will open the compartment. And maybe not.
Right now, he is fine. He is thriving. His dad is carefully and lovingly guiding him and helping him to develop the habits of a fine young man. He’s a considerate friend, he saves money and keeps his promises. He plays a lot of sports. He’s really good at school. He loves his iPhone. I stare at him in awe.
He is a beautiful boy. At 13, he’s growing almost an inch every month and now he’s 2 inches taller than me. I have felt so grateful to have time with him. But like most 13 year olds, hanging out with his parents is not the top priority. There’s no question that we thoroughly love each other beyond measure. But he says it’s OK with him if I return to New Mexico so that I can feel better.
My measure has been this: Can my health stabilize in Maine to a point where I could get a job? So far the answer is still no. My energy is not high enough that I can function without a nap every afternoon. I am able to run my two weekly rentals, which is good. I can do things like go for a hike, but I need to clear the rest of the day and the next day so I can recover. If I get a “hit”, I’m still down for a few days.
The most recent “hit” I took was changing the sheets in one of my rental units. I have been pleasantly surprised that I had not conspicuously reacted to any of my guests in my weekly rental units. I thought that was a possibility since I can react from hugging people here. I got through two months of guests before I had a woman who was sick. I found that I could not stand right next to her and I reacted to her bedding afterwards. I brought the sheets to the laundromat. I still feel weird 2 days later.
Like many mornings, I woke up today pining for the clean air in New Mexico. I can’t wait to get to the surface and take the SCUBA gear off and breathe real air. I can’t wait to get clean and stay clean for days. I just feel exhausted. Living here is incredibly hard on my body.
But I am glad I came back. I had to in order to “complete” a growth cycle, somehow.
I told myself that I wasn’t coming back to reconnect with Stevan, but that wasn’t true. There has been deep re-connection, as well as re-experiencing old patterns with a new level of consciousness. It is an irrevocable love for both of us. It never goes away. An expansion and contraction over years that has breathed us. Some of the patterns have cracked and dissolved, some may never. It is impossible to know if we will ever be able to ever be able to live together. So we love for now.
I have been able to experience some milestones with Gregory, my god son. I was here for his 13th birthday, I got to take him on a campus tour of Maine Maritime Academy and I was there when he surprised his dad by buying him a mountain bike. It has been a pleasure to reconnect with him. He got a puppy.
I have also been able to reconnect with Susan and Rosie and Willow and Jenna, four of my dearest friends here. I haven’t gotten as much time with them as I would like, but it’s pretty easy to make me happy with very little these days. I have also gotten to see my sister and brother-in-law, my dad and stepmom, my cousins, my aunt with dementia and my 92 year old family friend, Paulette.
It feels very much like a Hero’s Journey story. I am not of a mind that writing that story would be a valuable contribution for the world. I suppose that could change, but right now it feels very much like the most valuable contribution I can make is to show up right now, in every present moment, and to identify with the awareness rather than with the story.
I suppose I have written this in order to mark a turning point. This is another chapter in a story that I am no longer invested in. I am not the roles in my life. I am not a sick person. I am not my problems or my house or my story.
What happens next?
When practicing an extreme-avoidance-protocol, mastering the art of the “clean-break” can offer crucial boosts in your healing. When detoxifying from an environmental illness, your body can go through a phase of hyper-reactivity where tinier and tinier amounts of environmental toxins can initiate a large inflammatory response.
What is a “clean-break?” It describes the process of getting your environment all-clean, all-at-once. This is especially crucial for sleeping, so let’s walk through what a clean-break means for a sleeping situation.
Firstly, it means calibrating your bedding to only what can be cleaned in one day. If you are hand-washing your bedding, you need to have have enough blankets to keep warm, but not so many that you can’t get them all washed and dried in the same day. (In the winter, that ratio can be difficult to achieve, so it helps to have 2 or 3 sets of back-up bedding in your “clean box.” (Always store clean things in boxes that click shut.)
If you can afford it and you have a safe, mold-free, frost-proof zone, get your own brand-new washing machine and share it with no one.
We detox through our sweat and breath and therefore bedding needs to be cleaned not just from ambient toxins and spores, but from self-contamination. For many months, I needed to have a clean set of bedding every other day. If you are able to pull this off, it allows for a faster detox and recovery.
In order to have bedding that can be fully and thoroughly cleaned, it could be that you may need to sleep for a while on a washable surface, like a Thermarest. Part of the clean-break will be that you scrub the Thermarest with a soapy scrub brush (which is not used to clean anything else,) and leave it out to dry in the sun.
Next, you will want the blanket and/or sheet on top of the Thermarest to be washed, along with your blankets or sleeping bag. Everyone has different tolerances, so you will have to discover for yourself whether you can tolerate cheap fleece blankets and nylon sleeping bags or whether you need organic cotton and wool for sleeping.
Of course, the ideal for warmth and ease of handling is down. If you can afford a down sleeping bag, you might want to invest in one so that you stay warm in the winter. I have had success with this brand. You will need to wash it an absurd number of times, however, and leave it out in the sun to dry. It may not last more than 2 or 3 months, but so what. If it’s a choice between ruining a $200 sleeping bag and a) sleeping cold, or b) sleeping contaminated, it seems like a small price to pay for two months of sleep.
Since pillows are not easily washable, I settled on using wadded up fleece blankets as a pillow, and it works well. I wad it up in a circle so there’s a space for my ear, if I’m sleeping on my side.
Okay, now that your mattress, pad, sleeping bag, blankets and pillow are clean and dried in the sun in a clean area, let’s think about pajamas.
Sara Riley Mattson, the Girl you want to Camp Like, was my coach in the early part of my mold avoidance sabbatical. She suggested pajamas that work so well, I still use them. Knowing that mold-avoiders do better sleeping in fresh air, she suggested buying cotton hoodies, long underwear bottoms and the 6 pack of men’s cotton t-shirts to use as pajamas. These are cheap enough to replace a couple times a year, which you will want to do when you are detoxing heavily.
In addition to these, you want fluffy, ugly socks (so you won’t be tempted to wear them anywhere but in bed,) and a fleece hat (which is crucial, since you usually have wet hair when you go to bed.)
When achieving a clean-break, every single one of these items will be freshly laundered. I have learned the hard way dozens of times that having a hat or socks that were not freshly cleaned could ruin the whole clean-break.
Before you put on your pajamas, you need to be clean yourself. You go straight from batheing to bed. You don’t get into your car, you don’t check your email on a problematic computer. If showering means passing through a questionable area, you wear a “transitional” set of clothes– not day clothes, but not ultra clean pajamas. You change out of them and into pajamas right before you get into bed.
Likewise, when you rise in the morning, you sequester your pajamas in a clean box or bag. If you plan on wearing them twice, at least change your cotton t-shirt. Your pajamas should never cross paths with contaminated items, if at all possible.
I can’t emphasize this enough: when you go to the absurd, extreme measures that mean that everything that touches you is the absolute-cleanest it can be, you will be rewarded with a whole night of feeling peaceful and sleeping well. This break is the rest that your nervous system and immune system need in order to heal.
Although it sounds like a ridiculous level of attention to detail, it actually becomes quite routine after a while. It becomes second nature and much easier once the pattern is established in your life. If it all sounds quite overwhelming, don’t worry.
You actually don’t want to go from a fully contaminated space to a wilderness clean-break. You would start dumping toxins too quickly and that is very uncomfortable. The ideal is to achieve the cleanest-break you can create in the setting you are in. As you progress through detoxification, you need to steadily improve your environment or find one that is next-level cleaner.
You can apply the principle of the clean-break to your car before a long drive and to your living space.
In a world where there is no such thing as a mold-free or chemical-free setting, perfecting the art of the clean-break can be the closest thing you can find to the “bubble” that we need in order to heal. The best news of all: It works!
“An illness has enormous capacity to pull you into greater unconsciousness and it has an even greater capacity to awaken you.” —-Eckhart Tolle
When I was 45 years old, my life burned to the ground.
I became bedridden with an illness that my doctors could not identify. In between writhing in pain, I frantically researched online what was happening to me. My body was wildly misfiring and doctors clicked their tongues and wondered how the mind was capable of creating such drama. But they were measuring the wrong things.
That was two years ago. What followed was a collapse in my identities, one by one. First, I moved out of my boyfriend’s house. (I didn’t know it at the time, but it would be the first of twelve moves in one year, while sick.) Then I lost my job. I couldn’t take care of my son, so he stayed with his dad. My boyfriend disappeared for a while, then returned as a friend. The place I thought I held in my community dissolved when most of my friends dropped away. I began to wish I had cancer instead of whatever I had, because then at least my community would surround me and feed me, I thought.
Having a serious illness can be like walking into a house of mirrors with a baseball bat. After several reflections shatter, you want to smash them all to find out if any of them were real.
Five months into it, I got a diagnosis. Hallelujah! I rejoiced until I learned what the solution was. I learned that I had CIRS– Chronic Inflammatory Response Syndrome– or mold illness. Although it was an extreme challenge to even travel out of state to see the specialist who diagnosed me, the choice I now had in front of me was terrifying.
Since mold makes you sensitive to chemicals, and since there is no such thing as a mold-free or chemical-free environment, my choice was either to maintain my current path (investing all my money, energy and time in order to maintain my terrible quality of life) or I could choose what appeared to be the only realistic long shot hope of recovery. I could move by myself to the desert.
I resisted the long shot path for too many months . It became absolutely clear that I had to do it when I woke up covered in frost. Autumn in Maine. I was unable to be inside any building for more than a few minutes before my nervous system went haywire. I had to sleep outside.
I had to sell my car and give away anything that had been in the moldy house. I set off in October in a van, with all new clothes and donated items from Walmart for camping. I didn’t want to leave. I didn’t know where I was going. I was simply searching for a place that didn’t make me sick. I had no idea how difficult it would be to find. I felt like crap.
I was lucky that my family believed me and supported me from afar. Many people on the online forums were abandoned by their families. Over the course of this odyssey, I met hundreds of other environmental refugees, in person and online.
After driving around the United States for three months, despairing that I would ever find a corner of it that wasn’t polluted, I finally found a place. A hot springs in the center of a 3 million acre high desert New Mexico wilderness. Again, Hallelujah! (dot, dot, dot….wait.)
I found myself in a place that was so remote, not only did my phone not work, there weren’t even radio signals. There was no electricity and it got down into the teens at night. There were no showers or flush toilets. Since laundromats made me sick, I had to hand wash my bedding and clothing. That took several hours every day. I used to listen to streaming music constantly, so I didn’t have CDs. There was no music to distract me from the sound of water and birds or the cacophony of my dark thoughts.
There was internet in the valley, but it was very slow and I had to be in proximity to a building that made me sick in order to be online. I had never been so isolated.
I used to compost and recycle. I used to avoid Walmart. Now I was guarding my trash from wild animals and stashing it in trash cans at the gas station when I went into town. Walmart was the only reliably clean building I came to trust. The collapse of identities continued apace. Safe, middle class American, mother, productive citizen, dancer, New Englander… All shattered. I got to wondering what made me human.
I became an animal on a mission for survival that had no guarantee of success and lots of bedridden role models to remind me of the typical fate of someone with this illness.
I spent all day, every day working on keeping myself alive and clean and away from contaminants. There was no way to prevent all contamination, however. One day, a man rode his bike to visit me. He came right into my safe zone, upwind from my open van door and blew the fumes of hell all over me. I meekly said “You can’t be here,” while my knees buckled and the world spun.
He had contaminated my van and one of two sets of bedding. I worked for weeks to try to clean that bedding– I boiled it, soaked it, ozoned it, bleached it and eventually had to give it away and buy new stuff.
Alone with my mind most of the time, I was tortured by the thoughts of what my life had come to. I didn’t want to be alive any more.
There were wildlife sightings. A mountain lion had come through camp and I’d heard stories of a bear attack nearby a few years ago.
Eventually, my van no longer worked as a place to sleep, since it got contaminated every time I drove into town. I resorted to sleeping outside in a hammock. The air was great, but there was wildlife around at night. Locals advised me to get a gun, for my own protection. Everyone owned a gun. I looked at some, but opted against buying one. I didn’t trust myself with it.
I got a taser instead. I knew I wouldn’t use that on myself. From March to December, I slept outside in that hammock. If a mountain lion or bear observed me sleeping, I didn’t know it. Several times, however, Awareness woke me from a deep sleep to alert me to the approach of a band of javelinas (wild boar.) I clicked my taser and they fled. My heart pounded.
On one cold, windy night, I lied down on a cot inside a new tent. Within minutes, it was obvious that the tent was contaminated and that I would have a completely sleepless night. This was not unusual. I knew the only option was to get up, take a bucket shower and try sleeping elsewhere in my back-up bedding. I boiled some water and got naked outside in the freezing wind. I became aware that I was enjoying the hot water pouring over me under the cold, starry sky. It was magnificent! Aha…it’s my thoughts that cause the suffering! And I have a choice to not think them.
I started to see progress in my health, but after several months, I got a new infection. I struggled to keep myself clean enough to not go downhill. I wondered why I was keeping myself alive.
It was at this point that I met Michael.
He came to camp at the hot springs. After not more than ten minutes of chit-chat, he looked at me sideways and said, “I don’t usually bring this up, but I have two questions for you; What is your knowing that can’t be spoken? and What do you want from this life experience?”
I stammered to answer these questions and don’t remember what I said. But in the days that followed, I was in some kind of crisis. I kept going to deeper and deeper layers to answer these two questions to myself, over and over again. It seemed manic.
I had released myself from the seeker’s quest years ago. I had given up hope in it. Do I really want to rip it open again on top of my current struggle? It seemed I had no choice. Michael told me where I could find him, so I went to his house.
It was located in a scungy little dilapidated village, littered with 100-year old abandoned adobe buildings. The lot across from his place was strewn with trash, dismantled vehicles and scrap metal piles. But the gate to his yard was decorated with prayer flags and a golden metal lotus flower. Pulling into his yard, I saw elegantly tiled terracotta roofs, I heard bells and I smelled flowers. I had spent years in Japan, China and Nepal and this was one of the most beautiful temples I had ever seen. Jeez, who is this dude?
He was home and I asked if he would mind talking with me about something. “Of course,” he said, and sat there in complete presence. I found myself pouring out the details of my earlier life. Finding the Tao Te Ching and pestering my dad about learning how to meditate when I was a teenager. Taking a solo pilgrimage to temples around Japan on a motorcycle when I was 26. My profound restlessness and suffering after I had grounded myself in a marriage before I had found a teacher. I committed myself to that householder life by having a baby at 34 and it worked. It quieted my wanderlust and became my personal-growth path, but the marriage failed anyway. Being a seeker meant suffering, I decided, and I didn’t want it anymore.
But I danced. I danced so hard and so often that I became transparent. The whole reason to dance became the stilling of my mind so that I could reside in pure presence at least once a week. I knew this was connected to the mystery that had called me. But I didn’t know how to do it without dancing and I was too sick now to dance. Rekindling a hope that I could wake up in this lifetime felt cruel, as well as inevitable. It was true that I wanted nothing more. It had always been true.
Michael just listened. He teared up witnessing my suffering. He gave me a tour of his garden. He cultivated nine kinds of bamboo and “rescued” Buddha statues, although, he said, he didn’t consider himself a Buddhist anymore. He invited me to dinner and I burst out crying at the simple normalcy of sharing a meal inside a building.
He loaned me his audiobook copy of Eckhart Tolle’s The New Earth. I listened to it while I did laundry by hand for weeks. I had read the book years earlier when it had first come out, but I had not suffered enough yet to really understand it. This time it clicked.
“If you need a crisis, you will get one.” “Suffering is the greatest spiritual teacher.” “Luckily, life is merciful and generous and will provide you with the suffering you need in order to stop identifying with your life story.” I downloaded some Tolle retreats on Audible and devoured them. I started rejecting my “inflammatory” thoughts. Anytime I observed my mind thinking that things should be different than they were, I shut it down.
Michael then brought me to a retreat at a local center to attend something called “satsang.” I had never heard that word and the gathering was being held in an old building that I could barely tolerate, but once the teacher opened the room up for questions, I asked one. I had absolutely nothing to lose. I hated my life. I hated my mind. I hated my problem. I was willing to do anything.
The teacher’s name was Rishi. He had big, soft brown eyes and I instantly adored him. His questions were both relentlessly pointed and deeply compassionate. He gave me a tour of my own mind in front of a room full of people who had studied with him for years.
Over the next several months, I became dear friends with Michael, and Rishi took me on as a student. Both of these men had dealt with decades of chronic illnesses themselves. Michael was struck down with encephalitis when he was 36 and still dealt with intense, daily pain nearly 40 years later. Rishi navigated raising two children and teaching meditation while being intermittently bedridden starting in the 1980s. They welcomed me onto the well-trodden path, they said, of illness as a path to awakening.
Illness has a way of shattering your conventional reality and revealing the transience of all your capacities. That transience was always there, you realize, it all just seemed real and solid before. Illness has made countless people uncouple their lives from their “stories.” Your story can die, it turns out, and your life can go on afterward. They told me about how Ramana Maharshi, whose “story” died when he was 16, but who lived til he was 70 years old. He died of cancer of the arm without much treatment, but entirely without suffering, because suffering requires a story.
I started feeling lucky. My illness started feeling meaningful. My suffering dropped off precipitously, even though I was still constantly dealing with the same challenges of getting overwhelmed by contaminants that would light my body up like a wildfire. I changed where and how I slept each week, trying to stay ahead of the galloping inflammation and pain. But I got help from good doctors, got the new infection under control and made some progress.
Rishi helped me “drop it” over and over as I attempted to defend the reality of my mind-made identities. Just allow emotion. It comes through, but it’s not you. He said he could see who I am without these conditioned identities and simply held that vision of me each time until I could feel it myself.
Once, my twelve-year-old son made other plans on a Sunday night and didn’t show up for our regular Skype chat. I waited for an hour, sitting on a cold brick getting bitten by bugs outside my friends’ moldy house. I sat far enough away from the house to not get contaminated, but close enough to pick up their wifi signal. Defeated, I walked back to my campsite and completely lost it. I sobbed uncontrollably, sitting on the sharp gravel as it dug into my ass. I didn’t even wipe away the snot and tears from my face. I just witnessed my heart breaking further and further open, ever more exposed and raw. After about thirty minutes, my seemingly endless tears stopped and I got up and made dinner.
There have been times when I got overwhelmed by the sensation of being dismantled. Like when I realized that even all the good memories and all the things I was proud of were also figments of my imagination. It was easier to let go of the difficult things. “But ah, just wait til you try to drop the delicious, pleasurable things,” said Rishi.
Of course, my mind struggles to understand what is happening. There was a process underway that it wanted to take credit for and take control of. I demoted my mind. I “switched allegiance,” as Michael said. It is only from the perspective of mind that this is a process in time. Realizing that what is true beyond form is the constant, unchanging awareness does not require a path, a doctrine or a disciplined structure. It only requires that my mind get the hell out of the way, like during dance.
Rishi described using the mind “as a thorn to dig out a thorn.” It’s a tool, only, and in the end, that tool must also dissolve.
And so it continues. The inflammation, the illness, the constant striving for solutions, the disordered thinking during flare ups, the awareness that watches the show. My mind is still obnoxiously active, but there is much less suffering. And sometimes there is complete stillness and peace. There is resistance and identity and the dissolution of resistance and identity. For the most part, I don’t talk about this with the people in my life because I wouldn’t know what to say. The Tao that can be spoken is not the eternal Tao, right?
How do you explain that the worst thing that ever happened to me brought me to the heart of what I had always wanted? It doesn’t make sense to people that the baseball bat could be a blessing. Unless this consciousness is also emerging through them (whenever they run or climb or swim or sit and their mind goes quiet.) Then they know this too.
My son came out to visit me over Christmas break this year. He’s thirteen now. We had a magnificent three weeks together. He observed that I was different. How do you explain this to a kid? You watch the Matrix movies, of course! When I introduced him to Michael, I said he was like “Morpheus,” and when I introduced him to Rishi, I said he was like “the Oracle.”
I’m Trinity. 😉
A couple of short videos that illustrate the shift in perspective:
I have been assiduously following mold avoidance, and it is clearly crucial. However, I am still hyper-reactive long after I have finished detoxing from the initial toxic overload.
It’s time to start researching which of the brain retaining programs I am going to delve into to coax my limbic system into a different reality.
or this, which was recently recommended to me by my mentor, Sara Riley Mattson (who benefited from Gupta, but said she liked this one even more:)
I’m reacting too much to my computer, just now, so must stop for now and read more offline.
A nutritional approach is crucial. Detoxification is often impaired at the time of some toxic exposure. Everyone’s presentation seems to be quite individual, yet clean, wholesome food is a universal need.
Many people deal with an impaired intestinal lining, or “Leaky Gut Syndrome.” It’s best to heal that before taking probiotics, as putting probiotics into a permeable gut can increase inflammation. Do the “Specific Carbohydrate Diet” for at least one month.
A longer term healing diet that benefits bodies that are affected by biotoxin overload, orthostatic intolerance, impaired sleep, weakened adrenals, hormonal chaos and systemic inflammation is a Paleo Diet.
Sometimes going further into a ketogenic diet is required for healing. Often that is temporary, a matter of months, but in some cases (Epilepsy, Alzheimer’s Disease) people can benefit from a permanent ketogenic diet.
Two people are compatible when what they consider to be “real” overlaps substantially. But of course that mental concept of reality can warp and bend over a lifetime, since it has, itself, only a relative truth to it. Some ideas, like future, can implode on their own with just the lightest breath of a butterfly’s wing.
I thought, twice now, that my mom-group of girlfriends would be friends for life. A divorce or two ended that first illusion and the second group, though more “real,” still blew apart after bigger crises. One of us died. One of us got cataclysmically ill. One moved home to England. The one who was left was never the same. Future isn’t “real.”
It can really hurt when a future you thought you had evaporates. When a loved one dies or gets sick, when a relationship dissolves, it can hurt and hurt and hurt and hurt. Until one morning you realize that it doesn’t hurt when you don’t think about it. And then you realize that it’s actually the thought “This shouldn’t have happened,” that hurts, and when you reverse it and think “This was supposed to happen,” it doesn’t hurt as much. Better yet, when you don’t think anything and instead turn your attention to the smell of sunshine and the shadows of tall grasses waving in the wind, everything is fine.
When one person in a couple comes to the conclusion that the sunshine and the grass experience is more real than the “This shouldn’t happen” experience, it can affect compatibility. Or perhaps they both know that being present is important, but one of them thinks that the disgruntled, fickle, ecstatic roller coaster of mind is a different, but equivalent reality. Mind is a very sneaky trickster that is always vying for that perspective.
How do you ever know anything? People know things “in their bones” to be true. You can’t talk someone out of a knowing like that. That kind of knowing has nothing at all to do with the exchange of ideas. It comes from lived experience, decorated with ideas. You know what a burn feels like and what drinking clean water when you’re really thirsty feels like. You know what sunshine feels like on your skin and the difference between being treated with dignity and with disdain.
Most people trust their knowing and defend it rabidly. But there is a space in between a sensation like thirst or pain and the mental story of why. The story can increase the pain immeasurably. Removing the story can quiet the pain down. It makes sense that a burn hurts more when it is caused by someone who is supposed to love you putting a cigarette out on your skin versus a burn you get protecting your child from fire. Then again, people can have the wrong idea about how they got their burn, but they still have it and need to treat it. Changing your idea won’t make a flesh wound instantaneously heal.
When you asked me, “How do you know it is caused by mold?” I was taken aback. I asked you, “How do you know you have to pee?” and then, “How do you know that peeing will make the sensation go away?” The answer, of course, is years of experience of it being true. “I pee and the sensation goes away.” With mold avoidance, I feel clean, and then I get something problematic on me (presumably mold and/or chemicals) and when I wash it off, my sensations disappear. Over and over and over. Sometimes several times a day for almost 2 years now.
I set about trying to convince you of my experience, talking about my lab tests and very smart doctors and scientists who are experiencing and measuring the same phenomenon. I talked about the thousands of other people who are also healing this way. It occurs to me that if you had stayed to witness the daily details of my decline, it would be as obvious to you as it is to me.
I wish I hadn’t gone down that path. I will know next time. I am deeply uninterested in defending my identity as a person-with-this-illness. I am simply living everyday in the spaces that do not cause my body to go haywire. It’s very simple.
My lived experience was not compelling to you. These facts and scientific evidence were also not compelling to you. Your conclusion was that all illness is ultimately caused by stress. Your body has been so vigorous and strong all your 61 years. You’ve never had a serious illness or a natural disaster puncture the delusion that you are in control. Whenever you had experienced injury or illness during your life, your story that “stress was the cause” always felt true. Likewise, unwinding and “stretching it out” has always seemed to work for you. You confused the lens through which you perceive the world with “Reality” and suggested, ironically, that the lens through which I perceive the world is flawed. Lenses are all inherently flawed and can only ever represent a relative truth. It’s just our meat suits spinning sensations into stories.
Then you mentioned the ACEs study. The Adverse Childhood Experiences study conducted by Kaiser Permanente in the 90s. You pointed out correctly that I have a medium-high ACE score. People who have high ACE scores, as the study found, have higher rates of chronic illnesses like heart disease and diabetes, higher rates of autoimmune disorders, higher levels of addiction and obesity and they die earlier.
I agreed with your thesis that emotions inform the development of disease. It’s not wrong. But how many millions of smart people have been sick for how many combined years with how many brilliant doctors trying everything to help them heal? You may know in your bones that this is a key, but so what? There are 20-30 million people worldwide suffering from ME/CFS alone and telling them all to “de-stress and stretch it out” is no brilliant solution. In fact, it’s arrogant as hell.
We discussed brain-retraining programs. I knew that would be a part of my healing, but I had not gotten stable enough to do one of those programs yet. One of the things I learned in my relationship with you is how to honor you and your process. I learned that you move forward at your own pace, according to your own inner guidance, no matter what my opinion was. Oh the irony.
Unconvinced, you made me promise to keep my mind open to the possibility that it’s NOT really mold that is causing all these problems. You asked me to explain what seemed to you like inconsistencies in my reactivity. Then you pointed to the comment I made to my doctor about getting attention as a kid when I was sick in the hospital. So therefore it can’t be mold that is making me sick?
OK, let’s now talk about YOUR reality. How do you “know” you are meant to work with horses?? Yes, I know, you feel compelled to be near them and you feel so much better once you are with them. But it has come at a steep price financially and socially to keep creatures that don’t remunerate you, that you then have to protect. Perhaps there was some trouble in your childhood that could explain such an irrational urge? And why should I accept your explanation of this state of affairs, when I can create my own and try to compel you to align with it?
Why, indeed, was it so important that you impose your viewpoint on the cause of my illness? What’s it to you if I found something that is finally working for me? Can’t you see how much better I am? It is keeping me from dying. Why quibble? How about you keep your mind open to the possibility that you will eventually realize that I am right about what is happening to my body?
Were you loving me by coaxing me to a conclusion that denied the overwhelming evidence of my lived experience? For those of us who throw it all on the line to isolate mold as a variable in our illness– an exceedingly difficult and expensive thing to achieve– there is no reason to pursue it other than it’s what works. So believe me.
You have recently radically changed your diet to what I had more or less suggested years ago. In addition to feeling amazing and smelling so good, you remarked that it is easier to keep emotionally and mentally more steady as a result of this change (as I had suggested it would.) Hurray!
Whoops, was I just taking credit for your successes based on a story that reinforced my lens? Because if we don’t have some overlap on what we agree is “reality” then I get anxious that perhaps we don’t have a “future” anymore?
Is that what you were doing?
It’s not just that our lenses on reality have diverged. No, it’s more radical than that. It’s that I no longer believe that my lens IS “reality.” And neither is yours.
I struggle to meet you where you are, still grieving the life we “should have had,” still deriving identity from possessions and concerned with things like mortgage payments and “normal” vacations, while I am emerging, blinking and wing-scorched, from the pile of smoldering ash.
While you felt you were “with me” (presumably in spirit, since you sure weren’t actually physically around for this) I was breaking apart like a meteorite entering the atmosphere. My identities as a friend, a social worker, a young, beautiful woman, a mother, a dancer and your partner were popping around me like bubbles on a sunny day. Pop! Pop!!There goes another one! Not real! Sorry!
Each identity showed itself to be a mirage. A temporary hologram based on conditions that changed all at once. I have seen my mind, all human minds, as the projectors of holograms.
So while you were trying, for whatever reason, to convince me that your version of reality was more real than my version of reality, I was trying to say “No! They are both not intrinsically true!”
The only thing that is intrinsically true does not have anything to do with mind. Your mind or my mind. It doesn’t make any difference. This, too, didn’t feel true to you. Uh-oh.
After our heated discussion, I went to bed conflicted. “How can this be that our versions of reality are so different now? How do I reconcile this?”
I crazy-love this man, but I can’t imagine a life where my every self-care decision is scrutinized for legitimacy. But it also dawns on me how deeply this man must love me to have stayed connected, to even consider moving to be near me this winter, when he doesn’t fundamentally believe the premise of how I need to live. I realize how far out on a limb he has come to even be with me here now.
I did not give it to my mind to solve as a problem. I gave it to the deeper truth and in the middle of the night, I received the answer fully cooked, like a rack of lamb emerging miraculously out of a cosmic oven, succulent and perfect.
It came as a deep knowing (yep, I knew it in my bones) and it was accompanied by a silken, glowing sense of peace and rightness. A knowing that needs no story.
We can’t be together anymore.
Since I no longer believe in “future” either, it added, “Right now this is true.”
And then I fell back into a peaceful sleep.
The grief came later.
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.
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.
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.
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.
First things first. What is a mold sabbatical?
It is a time dedicated exclusively to recovering your health by carefully controlling your environmental microbiome. The nature of this illness is an over activation of an immune response. The only real remedy is to allow it to calm down on its own by being away from the triggers. How do you stop a swirling pool of water? You don’t swirl it the other way, you allow it to stop. Sure, there are things you can do to support your immune system’s healing along the way. But the main factor by far is getting away from the mold, mycotoxins and chemicals that are making your system go haywire. This is impossible to do in the same environment that made you sick. Moving to a different setting with different mold and mycotoxins might give you a short break until your system gets sensitized to those. There are lots of half-measures you can do to try to support your functioning if you are unable to move or leave your family. But this blog is about the fastest, safest bet for kicking this insane illness and getting back to health.
You have to get away from human civilization. Why? Because the problem is actually us, not the mold. Mold has mutated over the last 40 years in response to the chemicals humans are proliferating, particularly the fungicides in house paint and agriculture. It’s doing what it is evolutionarily designed to do: trying to clean up and decompose things that are not natural. These new, mutated molds are producing chemical by-products, mycotoxins, that are novel and neurotoxic to about a quarter of our human population. When you go to the wilderness, you are going back in time to when mold was relatively benign. Most outdoor molds are not problematic for people with CIRS (although there are exceptions.)
When to go
The ideal time to start a mold sabbatical is probably March in North America (or just as winter is ending in the Southern hemisphere.) Erik Johnson dubbed November to February as “Suicide Season” because of the extra challenges of trying to stay warm, clean and dry all at the same time when you are trying to avoid mold. During November to February, you often have to choose 2 out of 3. Sometimes you only get one.
November to February is a time when you simply try to not get worse. If you make any progress, it’s a bonus.
Obviously, people are getting diagnosed with CIRS at all times of the year. In my case, I was diagnosed in April. I spent the whole summer trying to fix my house, hoping I would be able to stay. It didn’t work and by mid-October in Maine, it was clear I needed to go somewhere where I could still live outside. I don’t recommend starting your mold sabbatical right before suicide season. Stay where you are and just do your best. Or you go somewhere warm.
Where to go
People say you can’t heal from mold illness east of the Mississippi River. I believe that’s true. The east coast is too densely populated, too full of chemicals and too moldy for a person’s system to calm down. Here’s my advice;
Take a look at a cellular service coverage map and find the blank spots. It’s either a wilderness or very sparsely populated. They are getting smaller every year. Find the place where there is no cell coverage nearest to you and go there first. The more far flung, the better. Look for “end of the road” communities. That means that it’s not on the way to anywhere, it’s at the end of a long road. Look for campgrounds that don’t offer electricity at first. Then explore boondocking, which means camping in places where you are off on your own with no electricity or services. There are lots of National Park Service and Forest Service roads that are designated as OK for boondockers. You need to go to the Ranger Station to find out where they are.
While you are there, pick a Ranger’s mind about the 450 Park Service locations around the United States. Ask specifically about wilderness areas. Juxtapose maps of wilderness areas with cell coverage maps and then try to find hot springs in the area. They are all over the western states. If you are lucky, you will meet “through hikers” who are hiking either the Continental Divide Trail or the Pacific Crest Trail. You’ll see how happy these people are with an ultra-simple life and you will feel lucky about all that you have instead of all that you have lost. Plus they know where all the secret hot springs are. 😉
You will notice that there are a LOT of RVs on the road and lots of RV parks. RVs can be notoriously moldy because they aren’t designed to accomodate condensation issues well. The danger of staying at places that offer electricity is that you might be packed right in next to moldy RVs. No bueno. RV parks also often have vented septic ports at each site, which can be problematic. Occassionally you can find RV parks that are on city sewer systems. Those are better because it takes sewage “away.” Particularly avoid RV “dump stations” as some super-toxins travel in sewage. There are some RVs that aren’t moldy. Interestingly, it seems to be the boondockers.
Hot springs are good destinations. Often the water is alkaline or contains minerals that help restore your health. They have unlimited hot water, possibly saving you fuel and helping with your laundry. When it is scary and problematic to lie down to relax (unless you wash yourself and every stitch of fabric) hot springs offer a place where you can literally float and relax completely. As a bonus, interesting people find them and you have an opportunity to socialize in a setting where everyone has washed their spores off. Lastly, they help you feel lucky for a sensual, healing experience in an amazing setting when the rest of your life feels like it’s in hell’s handbasket. Getting into a hot springs pool feels like getting a hug. And boy, do we need a few hugs a day.
Picking a car
Let’s talk logistics. You need a vehicle. If you are escaping from a moldy situation, you might need a different vehicle. If you can tolerate ozone, ozone the shit out of your car with a high powered (20,000 cfm) unit for 8 hours overnight. Allow a day or two to air out. If you do need a new vehicle, you might not be unmasked enough to pick a great vehicle, just know that actually driving a vehicle, particularly up and down mountains, actually cleans the vehicle. It helps to denature the mycotoxins and they fade. You will need to keep a car as spore-free as possible, but the toxins can fade while driving. The point is, you don’t have to pick a perfect car and you don’t need to worry (as I did) that as soon it gets mold in it once, it’s ruined. You can usually work with it. If it has too high a density of spores, has a colony in the air conditioning/heating, or has any Stachybotrys or any super-toxins, it might well be ruined, but usually in a partially masked state, you can sense these before buying. Check with your intuition, because often your body knows before your mind does.
Ford and Nissan make small cargo vans. These are good bets because they are all steel with rubber flooring and you can wash them down easily. It’s the upholstery and carpets that get hard to clean. So a car with rubber floors is safer. After starting out with a van to camp in, I eventually learned that I prefer a pick up truck with a cap because the driving compartment got contaminated every time I went into town. Now, with a pick up, I can hose down the bed of the truck easily and sleep in there, even if the driving compartment isn’t perfect. I got a 2003 Tacoma because Toyotas are awesome and reliable, but they also have problematic AC/heating systems for the newer models.
Newer is also safer, despite the outgassing chemicals. You can heat it up to make it outgas faster. Older cars are simply more likely to be moldy, unless it has lived its whole life in the desert. If you are looking at a car, make sure it has never gotten wet inside, has no leaks or holes in the ceiling. Some Subarus, for example, have a drain that goes along the groove where the roof rack goes. Inexplicably, this drain travels down a pipe on the exterior of the car to empty out in the rear tire wells. This drain opening can constantly get clogged with debris, in which case water would come into the interior of the car. People won’t think to tell you things like that, so ask specifically.
Attaching a tow-hitch has the advantage of allowing you to either mount a tray on the back of your car for items you don’t want inside, or later get a trailer.
If you want a place to live, I would recommend either a Casita or Scamp trailer, or better yet, setting up a custom cargo trailer to live in, with a Murphy bed, a kitchen and make-shift, no-plumbing bathroom and shower.
Starter Shopping List
3 sets of day clothes
3 sets of pajamas including hats and socks
A back up set of clothing (that you keep in a plastic bag in your car for emergencies)
Raincoat or Froggy rain suit, doubles as spore jacket.
Down coat or vest
Flipflops (for bathing), rubber clogs (for camp) and walking shoes (for town)
A main set of bedding
A backup set of bedding
A clothes box (with a plastic zip box inside for pajamas)
A bedding box
A utility box for
Cookware, dishes and cutlery
2 collapsible backpacks to carry electronics (so you can switch them out and wash them)
2 passport belts to carry wallet/phone
A wonder wash machine
A Nina spin dryer
A 400w inverter to attach to your car battery to run the spin dryer
A Berkey travel water filter
A Buddy Heater and/or a hot water bottle
Bronner’s castile soap (for laundry, bathing, dishes)
Downy Free and Gentle laundry softener (helps remove spores) (*see The Toolkit)
A full complement of plastic bags– green for day laundry, white for pajama laundry, ziplocs of all sizes for everything. You will use more of these than your environmental conscience can tolerate.
Mylar bags– plastic will sequester spores, but not toxins, which act as a gas. Mylar bags will sequester toxins too if you have something you need to keep clean in a contaminated space or something contaminated in a clean space. (Like town shoes.)
Keep in mind that spores love super fuzzy items like fleece jackets or blankets, so they are harder to get spore free with cold water. Smoother surfaces like nylon or silky type bedding are easier. Using a dryer can get your spores off, but unless you are the only one using the dryer, I can’t recommend you do that because of what else your stuff will pick up in the dryer. One trick is to leave your super-fuzzy items at camp and get a smoother jacket to wear into stores or town. But use Downy Free and Gentle in each wash/rinse to attract the spores and move them along.
Random tip* if you are buying multiples of anything (pants, boxes, hats, etc) get different colors. It helps to keep things straight that are clean or need to be cleaned.
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.