Today’s Mold Talks guest is Erik Johnson, a U.S. veteran, advocate, podcast host, author, mold revolutionist, and Chronic Fatigue Syndrome survivor. Erik has been an invaluable asset in pushing for change thanks to his deep history with both mold illness and chronic fatigue syndrome. Throughout his life, he’s experienced mold exposure on several occasions and the drastic impact it has on health.
Using this experience, Erik has dedicated his life to pushing the line forward when it comes to mold awareness, research, and related illnesses. After witnessing countless individuals suffer through the debilitating symptoms of exposure while still seeing little to no action taken to address this ongoing issue, he realized that change wasn’t going to come easily. Still, those dealing with chronic illness deserve help, which is why he’s spent years of his life researching, sharing his story, advocating for change, and shining a massive light on this worldwide issue.
During their discussion, Erik details his life-long journey with mold illness and Chronic Fatigue Syndrome and what he has done to push the needle forward on more awareness. He explains the issues he’s witnessed as well as the importance of creating change regarding this indoor contaminant. His in-depth insight highlights the tumultuous journey of mold awareness thus far and how much work is still needed to make it a recognized worldwide issue.
"I've wound up in a pretty unique position in mold history and in chronic fatigue syndrome history. So, I have some insights into how the progression of this paradigm came about and might be able to clear up some of the confusion about it."
Erik’s journey with mold began when his family moved into the Strawberry Hotel, an old stagecoach stop on the Sonora Pass, to take over management in 1964. Unfortunately, their transition into the new building was not the beneficial move they thought it would be. As Erik said, "I immediately realized that I was in trouble," when he began developing a list of symptoms after moving in.
His parents attempted to take him to doctors, but no one could figure out why his health continued to decline. As Erik said, "They absolutely did not have a clue about mold back in 1964." Not only that, but his developmental years were also impacted as he fell behind in school, continued to face debilitating symptom after symptom, and couldn’t socialize with other children in a normal way.
"Except during the summer. In the summertime, in order to free up room in the hotel, my brother and I would go out and sleep in the buggy barn—a little coach shelter next to the hotel. Every summer, I would recover to the point of acting like a normal kid. I wanted to sleep out there all winter long, but my mom wouldn't allow that. But, this drew my attention to mold so dramatically. It was on my radar."
This spark of mold awareness began because of an encounter with newspapers covered in black mold in the hotel. Being an older building, Erik believes they probably used newspapers to help insulate the building. When he tried to hold up one of the papers to read it, his body immediately went into defense mode and caused him to collapse. For days, he couldn’t leave his bed, making it clear to him that mold was public enemy number one for his body.
Even after moving out of the hotel, Erik continued to battle mold sensitivity throughout his childhood. The front entrance of his school, for instance, would knock him out even if he was just passing through. Eventually, the entire school would send him into a symptom flare-up during certain times of the year. His family’s new home, though, caused absolutely no issue.
"So, I was aware that these exposures from somewhere other than my house could have such a driving force that it wouldn't do any good to test my own house or focus on that specifically when these exposures elsewhere could completely overwhelm what was going on in terms of my health."
After graduating, Erik joined the Army to "go someplace interesting" and once again encountered this fungus among us. A flood in the basement armory led to black mold growing all over the cardboard boxes in the space and immediately sent Erik’s health into a tailspin. This time, though, he wasn’t the only one that fell ill. His entire unit also got sick and stayed sick for some time. The effects were so severe that his commanding officer feared that it was poisoning from a terrorist attack and called in the Biological Warfare division.
The team of researchers found no trace of poison, but did agree that the black mold should go away. Unfortunately, that task was assigned to Erik and his unit. He attempted to protect himself from the mold by asking his commanding officer if he could use his M17 gas mask, but was told by headquarters that it was reserved for warfare and not for a "mere allergy."
"I get sent down into the bowels of the armory and I'm carrying out cardboard boxes dripping with this black mold, and within an hour, my platoon leader looks over and says, ‘You better get out of here, Johnson, or you're going to pass out.’ I crawled up to my bunk and collapsed. There again, unable to move for days, and this knocked me down to an even lower level of health."
Most of his unit recovered from their chronic illnesses after removing the mold, but Erik and quite a few others never did. Finally, he told his commanding officer that he wouldn’t be able to reenlist because he just couldn’t tolerate the symptoms any longer. As soon as he got back to Lake Tahoe, he immediately felt better. Until his belongings came a few months later, that is.
"I unpacked it and instantly was overwhelmed. The same effect that I felt in that building and it plunged me into total relapse just for my possessions. So here I was getting an education on how contamination of my possessions that alone could be a driving force. And this led me to make more efforts to get contaminated objects away from me to spend more time in good buildings, less time in bad buildings."
Unfortunately for Erik, he quickly realized that there were more "bad buildings" full of mold than good ones in the Bay Area. His experience with symptoms, though, made him notice that he wasn’t the only one suffering. Others in the moldy buildings were being affected as well. After some time of continually being beat down by exposure-related symptoms, he moved back to Lake Tahoe and began seeing Dr. Paul Cheney just before the Lake Tahoe epidemic in 1985.
Eventually, the CDC would come out and rule the sickness as a "savage flu." Still, Erik and Dr. Cheney were intrigued that those who failed to recover from this mysterious flu were often the ones who frequented "sick buildings." They pushed for further research into this observation, which would lead to the recognition of a new condition called Chronic Fatigue Syndrome. But, while the syndrome was validated, no one connected the dots to the ongoing symptoms of moldy buildings. They simply named and identified the new condition.
"From that point on, researchers identified people using this very vague and nonspecific definition that didn't have any real markers or clues to go by but called that chronic fatigue syndrome and no longer took any interest in the actual incident that this syndrome was based on. That led to my efforts to contact Dr. Shoemaker and many, many others, and we tried to put this mold factor back into the syndrome."
Over the years, Erik would continue to delve into research related to mold exposure and the effects of sick buildings while also attempting to heal himself. He eventually discerned that when he practiced significant avoidance of any moldy areas, his health improved remarkably and he could live normally.
Now, he’s focused on spreading awareness and pushing for even more research regarding mold, exposure, and illness. Aligning with other mold revolutionists, he’s been a frontrunner in pushing forward this movement by acknowledging this worldwide epidemic and encouraging change.
"Mold avoidance is a journey. It's not something that you could go out and undertake or succeed in immediately. It starts with the concept that there is toxic mold and that you can avoid it. There are small steps that you can take to put yourself on the path to taking control of this, and every little bit helps. Once you simply become aware that this is possible, that it's real, and that you can step away and you can take these little steps, you're automatically developing ways of considering how you might do that: getting out of a bad building, avoiding a certain object, getting something out of your life that you brought in and it kind of made you feel not quite right. All these little things add up. And, there are a lot of people who are on the verge of illness who are just starting into hypersensitivity, whereby taking these little steps, simply becoming aware, they kind of almost automatically guide themselves into subtle forms of avoidance and bring some kind of recovery."