Welcome back my friends, to the show that never ends….ELP
For a few years now, I’ve been living a lifestyle based around mold avoidance. By “based around”, I mean that my daily routines, my living quarters, my life decisions, and even the location that I have chosen as home base – all incorporate the premise that mold is my kryptonite and must be avoided at all cost. This premise has kept me upright for a good long run.
In 2007, I was bedridden, and had been for a while. I was suffering migraines on an almost daily basis. I was having seizures. I had full Parkinson-like symptoms. My gallbladder was on the verge of coming out, I’d had 8 consecutive kidney stones, my teeth were exploding in my mouth, and I had an appointment to get my thyroid irradiated. My cognitive abilities were probably at the 3rd grade level. I was definitely not smarter than a 5th grader. My idea of a vacation was migrating to the couch.
One day, I posted what became a fateful piece on a message board. I said, “Maybe my house is killing me?”. That statement drew a response that saved my life, from Erik Johnson. He said, “Now you’re talking my language”. That kicked off a friendship that has endured through thick and thin, and a subsequent road map out of hell.
Here was a survivor of Incline Village,a Cheney-appointed prototype for the illness cluster there, which infamously earned the attention of the CDC and the name “Chronic Fatigue Syndrome” – a man who was as sick as they come, and who was now out climbing mountains. I decided that whatever he did to achieve that kind of turn-around was what I would do. It didn’t matter what it was. It could have been “stand on your head an hour a day and count backwards in Arabic”, and I would have done that. As it turned out, it was mold avoidance.
Over time, I got to know Erik’s story. He talked of particular areas in Incline Village, around lake Tahoe, in Reno….and the teacher’s lounge at Truckee High School, as all having the toxic effect that he avoids. He said that the effect is still there. In the fall of 2011, having reached a high enough level of health to even entertain such an idea, I decided to take a trip out to Reno to see for myself. After all, this man had put me back on my feet. I wanted to see “inception”.
I left Albuquerque feeling well, excited to be making this trip. I flew into Reno, with a six hour layover in Phoenix. By the time I got to Reno, everything I was wearing and all of my luggage was contaminated. My computer was contaminated. The Phoenix airport felt awful, and the second hop from Phoenix to Reno had me squirming with pain. I felt like I was getting superblasted with toxins. By the time I got to Reno, I could hardly stand myself. When I met Erik, he couldn’t stand me, either. I was thoroughly doused with toxins. The first order of business was a decon shower and a change of clothes. Everything I brought had to stay outside. In particular, the green hoodie I wore on the entire trip was lethal. Day one was all about cleanup.
But, after the decon and the clothes change, my own health took an immediate bounceback. As hard as I got hit, the idea of keeping my immune system response dampened down with constant avoidance protocols paid off. I was functional. Welcome to Reno.
The next few days were a whirlwind of activity, including multiple exposures to toxic assault. A walk with Erik through downtown Reno and along the riverwalk was an amazing adventure, simply because we threaded our way through plumes and exposures to people who were cross-contaminated. We moved as if in unison, in that strange dance that moldies do…simultaneous shifting from one side of the street to the other to avoid a blast of badness coming from a building, backing away from a counter where the clerk was emanating cross contamination, and then…”Did you feel that? Look at your hands, your veins are popping. So are mine.” Wonderful validation.
A trip to the WPI and a tour of the campus was interesting. At the time, the WPI was still looking good, although unbeknownst to me at the time, my visit was on the same day that Judy was being fired. The building was beautiful, a real testament to forward-thinking and high hopes. However, the impression was that of a ghost-town. I met Annie at the reception desk, and introduced myself as another CFS sufferer who had achieved a large level of health through mold avoidance. The building itself felt good to me. However, near the counter there was a lingering cross-contamination, a “gift” that somebody had left behind. It was enough to make me back away.
The Main Event
One whole day was devoted to a tour of CFS History, which equates to the same thing as “The Mold Tour”. Before getting into details, I have to tell you that this trip changed my life on two levels.
On one hand, it was like visiting the scene of a horrible event that changed the history of my “people” forever. I imagine the feeling was similar to visiting a concentration camp that one’s parents were interred in, or visiting the scene of a violent crime that resulted in the death of a family member. It hit me to the core, in a way I didn’t expect. Here was where people suffered greatly, where a town ostracized their own desperately ill citizens, where the CDC came and effectively issued our death sentence. Here was where a catastrophe got swept under the rug. Here was where the paradigm of concerted and overt lassitude on the part of the government was framed as policy, and where everything that has broken my life began. Here was the epicenter of the wormhole, the same wormhole that has generated an inescapable tractor beam that has sucked me into its event horizon, years later and miles away.
On the other hand, it was extreme validation. It was validation that everything Erik had told me about the level of toxic assault in the area was true.
Reno itself is no picnic as far as toxic assault goes. Erik lives there, and I immediately saw what his concept of “extreme avoidance” entails. It doesn’t mean living in the desert. It means living right in the middle of a city full of opportunities to get slammed. It means maintaining a pristine living space, honoring decontamination protocols, and wending your way through “normal” activities on a daily basis, and cleaning up the mess it makes with your extreme protocols.
Our journey through the history of CFS began just as described in Hillary Johnson’s book, Osler’s Web: Inside The Labyrinth of the Chronic Fatigue Syndrome Epidemic. Setting out by automobile, we retraced the 1985 route of CDC epidemiologists Kaplan and Holmes on their way to investigate the “mystery malady” reported by Drs. Peterson and Cheney.
We drove up from the hot sagebrush-strewn desert floor of Reno, along the narrow winding tree-lined road up toward the summit of Mt. Rose, gradually snaking our way up the boulder strewn twists and turns of the winding path leading up the 8,000 foot mountain of granite bordering Tahoe’s rim, until finally, cresting the peak, we gazed down upon the stunning expanse of America’s second largest alpine lake.
(Yellowstone Lake takes the prize).
12 miles long — 22 miles wide- formerly so pristine that in days of old, a white dinner plate, “Secchi disk”, a test of water’s clarity, could clearly be seen 120 feet below the surface.
Invisible until we pulled off at the scenic overlook to admire the scenery, Incline Village far below hugs the shore. Its verdant forest setting starkly contrasted against the sparkling blue waters of Lake Tahoe, suddenly emerging to view from our vantage point high above. A sight to remember. But the air was a little foul. Not in smell, but in feel. I could sense swelling at the base of my skull, a souring of brain activity. It wasn’t a place I wanted to be.
The next stop on the tour was the library in Incline Village. We got out of the truck and walked into the library. As we rounded the corner to the reception desk in the middle of the building, I felt some very familiar symptoms, quite rapidly. Brain compression hit within moments of approaching the area, along with a narrowing of vision, rapid heartbeat, and agitation. I couldn’t wait to get out of there. Erik grinned at me. He knew I’d react that way. We didn’t stay long.
We visited the building that housed Dr. Cheney and Dr. Peterson in the days of inception. Erik described to me how he sat in that very office, stunned to the core when Cheney asked him to be prototype for the illness that the CDC was framing as “Chronic Fatigue Syndrome”. He didn’t want it. The responsibility was daunting. The enormity was staggering. But then he realized that as prototype, researchers would listen, would come and explore the toxicity of the area, would follow the clues that he and others in his cohort could point to. He had no idea how wrong he was.
He also described to me how that very office, those very handrails, were where patients would stagger to and push off from, to propel themselves to the next handhold, as they came out of the office. The staggering gait, the inability to convert brain-commands to neural action, were all described in Osler’s Web. These things, over time, have been reframed somehow as “fatigue”. It was not on any scale of fatigue.
We worked our way through Incline Village and through King’s Beach towards Tahoe Vista. There were intermittent stops on the way, some that were interesting historically and others that were just downright toxic. I won’t go into detail, as the main event was yet to come. The tour is worth taking for any CFS patient. It was a remarkable journey, both from a “grounding” perspective and from a neurotoxic perspective.
It was time to head toward the piece de resistance, Truckee High School. Upon our arrival, Erik warned me to follow him, that sometimes one had to be careful about which way one approached the building. He said that the wind can blow the effect right out of the building and walking into the wind may be a bad idea. I followed him closely as he remembered his high school days there, and how he had to sit outside at every opportunity. Our approach was uneventful, but as soon as we opened the door to the high school, I went into neural shut-down mode. The inside air pushing its way out was filled with a forceful toxic assault.
We crept inside, approaching the hallway that contains the infamous teacher’s lounge. As we got closer and closer, my heart rate jacked up enormously, and my vision closed in. My peripheral vision was shot, and I could only see through a tunnel. My head began to spin a bit, and the veins on the backs of my hands popped noticeably.
As we rounded the corner, with the lounge in sight, I turned around and headed back out. I could not take one more step forward. It was too much. Whatever was wrong with that place, whatever it was that contributed to all those teachers’ illnesses, was still there. Erik walked me out and back to the truck, and we went up into the mountains for some fresh air. It was only moments before I was back to normal. We had a pleasant walkabout and a good dinner, and went back to Reno.
It’s been more than two decades…creeping up on three….since the outbreak of illness in Incline Village. It is beyond my comprehension that in all this time, not one researcher has gone back and listened to this story. Other than patients who have come to do the tour, nobody has explored these pockets of toxicity. There are still survivors. The story can still be told. And, whatever is wrong with that area is still there. Erik doesn’t offer mold as the cause of CFS. He has never once said that. His clues don’t negate viral impact. There WAS viral impact in that cluster. But some recovered, while some went on to enjoy a lifetime of CFS. What was the differential?
At this rate, we’ll never know.