The Agony and the Ecstacy of Mold Avoidance: A Victory Laced with Intense Emotions
By Bryan Rosner
I am realizing that people outside of mold avoidance (family and friends) perceive me to be angry. I don’t really perceive myself to be angry. But then again, I am on the INSIDE of my own story, and can see all the moving parts.
If I imagine myself outside looking in, it is easy to see that people can’t possibly understand what this feels like. So I will try to explain.
I’m not so much angry. It is more like, disgusted, fed up, moving on. This may also confuse outsiders. So I need to keep explaining 🙂
The emotions that have been building up in mold avoiders for decades are cumulative. They’ve been building up like some kind of swampy ooze, in a bottle, for thousands of days. It is only when mold avoiders actually realize what has been making them deathly ill, that they simultaneously realize this volcano of emotions is about to erupt.
Hundreds of doctor’s visits with no benefit. Hundreds of conversations with well-meaning family members who offer blank stares and eventually, maybe even skepticism or at the very least, exhaustion from the illness. Endless frustration and demoralization from lack of answers.
But worst of all, an illness that garners absolutely no recognition, sympathy or support from the normal world. No one would say that cancer is a good disease to have. But cancer patients do have one thing: they have support, sympathy, understanding. They get chicken soup for the soul. Mold sick individuals get no such thing. Even the most well-meaning family and friends just don’t have a frame of reference for this problem and can’t understand the absolute pit-of-hell sensations and symptoms mold-sick individuals face.
Eventually, the mold-sick individual begins to question themself. Even if they know for sure that their illness is REAL and their symptoms are 100% out of their control, subtly, slowly, over years, they begin to feel bad about themselves. The incessant lack of validation and answers, and blank stares, eats away the soul. It must eat away the soul, for it is soul-destroying energy which no being can resist endlessly.
Finally, if the mold-sick person actually is fortunate enough to discover the root of their ills (mold exposure), then the next step of the process is even more demoralizing and difficult. Leaving a home, belongings, and possibly a city or community – with absolutely no support whatsoever. Now, I don’t mean that some family and friends aren’t supportive. They absolutely are! My own family and friends have been extremely supportive, for which I am eternally grateful.
That’s not what I mean by support. What I mean is, validation. When someone has cancer (and again, I am not comparing the SEVERITY of cancer with mold illness – I am just comparing the outward perception)…when someone has cancer, they get validation to soothe their soul. Yes, you’re sick. Yes, you need help. Yes, we understand that you need insurance money, meal help, community support. Yes, yes yes.
Mold avoiders get love and support, accompanied by blank stares and shrugs. Again, this just eats away at the soul. And this is in the best of cases. In the worst of cases, they get no support from family or friends, no insurance money, no financial restitution in a day and age of endless insurance on everything. Our cars are insured; our homes, our health, everything. But not for mold illness patients. They are hung out to dry.
But then something unimaginable happens. When the mold avoiders hit the road and get clear of mold and do whatever they need to do to “try out mold avoidance,” something remarkable happens.
They begin to feel better. Much better, and fast. And, they begin to self-validate. They realize, that all of those years, all of those doctors’ appointments, all of those blank stares. It actually WASN’T their fault after all! The guilt, shame, questioning, sadness, despair, all melts away into a sort of catharsis or epiphany: “This wasn’t my fault, and I’ve been mistreated and abused for decades.”
Now, hear me. I don’t mean anyone mistreated or abused us ON PURPOSE. It was simply the way the cookie crumbled; with a misunderstood disease. Imagine how people have felt in centuries past when they have legitimate diseases but are relegated to the dark corners of society with no validation or recognition. Think: Leprocy. Lepers were told they are unclean and deserve their illness.
Now, do I overstate my case? I don’t think so. Mold illness patients have never been validated in our whole lives. It is not that we seek pity, or hand-outs. Only justice.
I guess I need to back up for a minute so people understand just how much I take responsibility for my own life. Even when I was at my sickest, I STILL attempted to work all of my 4 jobs. I demanded that my wife not talk to ANYONE about me being sick. I wanted to be a strong, capable man. I made every effort to hide my illness. I didn’t post about it on Facebook, I didn’t tell friends about it. I mention this so people don’t get the idea that I was a complaining “poor-me” illness sufferer. I was the opposite.
But the small nibbles at self-dignity and self-respect which occur over the course of decades of misunderstood illness, build up and eat away at even the most noble of us.
But wow, when you get clear of mold, and you realize: I DO have a normal body, I CAN heal, it WAS NOT “all in my head.” It is mind-blowing. But I was left with this bad taste in my mouth: wow, all of these years I was completely marginalized by medicine, insurance, society. But now, I have a chance to have a fresh start! I can live a normal life. The emotions are beyond description.
The rearview mirror isn’t pleasant. Like a dog that has been whipped by a previous owner, the tolerance for abuse and misunderstanding just kind of disappears when people realize that they didn’t deserve it and don’t need to live like that anymore.
It is kind of like someone who has been a victim of Stockholm Syndrome for decades, but then realizes that their captors actually are evil. When the person escapes, imagine the bitterness and feelings they may have toward the captor.
Now, I am not saying anyone was INTENTIONALLY being the captor. Of course not. But the unfortunate circumstances themselves, were the captor. If someone is stuck in a cave with no food and water, this can create strong emotions, even if the cave isn’t mean. People may still hate, be afraid of, have phobias of, caves. In this case, the “cave” is basically the first half of my entire life! Intense, yes, I realize that. But true. Another analogy: Grizzly bears. They don’t mean to be scary. They probably aren’t mean. But if he tries to eat you, you’re gonna treat him with the same skepticism as though he actually IS mean. Do good intentions (“he’s just hungry, its not his fault”) really matter when you’re being eaten by a bear?
Those of you who have experienced a medical problem and gained understanding and support know just how important that is. If you have the flu and your loved ones bring you soup, it means the world to you. Imagine having the flu a thousand times with no such support. That’s how it feels. Even with a few close family and friends offering support, it is still mostly – lack of.
So, when the escape hatch opens – we take it, and we don’t look back. A struggling forest animal who’s been caught in a trap for as long as he remembers. The trap opens, the animal runs away, never to return to that part of the forest again.
We then struggle to separate the true enemy – unfortunate circumstances and lack of medical help – from the “false” enemies – all the people who meant well but just couldn’t help. Please be patient with us; it is a work in progress. We intellectually KNOW that everyone who tried to help actually meant well. But the emotions persist.
I could bore you with the many anecdotes from my own thousands of days in captivity. Like the doctor who straight up told me that I wouldn’t get anywhere in life if I kept focusing on my health, and that I should instead take a nice vacation. Or the ER doctors who laughed at me. Or the tired look on family and friends faces who didn’t witness me feel better after I “should have started feeling better.”
What happens as we are going through these dire circumstances is that we develop coping mechanisms to survive the emotional train wreck of being so misunderstood. We build intellectual structures and mazes to try to hang in there one day longer. We fight suicidal urges by talking ourselves into a worldview which says we are still better off alive than dead. (Suicidal thoughts can be the result of the brain chemistry disruption from mold itself, as well as the misunderstanding the world treats us with).
However, when the scared, tired, injured animal escapes, and is returned to some semblance of health and wholeness, these intellectual and emotional mazes, structures, and coping mechanisms just come crashing down with a huge boom.
What is left after this boom is a deep feeling of gratitude for being free. But also, a deep disgust and horror at what had happened. It is known that humans can’t fully process trauma until after they are free of it. The human mind stays in fight-or-flight, adrenaline-dominant survival mode while the trauma is fresh and active. It is only later that the higher-functioning parts of the brain can process what actually took place. The horror and devastation of it is absolutely awe-inspiring.
What makes it even more all-consuming is the totality of the horror. Because toxic mold has taken root on a huge percentage of civilization, we realize that our “trap” was ubiquitous and merciless. And it is very hard for us to think fondly of it.
There are gut-wrenching inner struggles and dialogues. “But, I had such a loving and caring community and such a wonderful childhood.” “Yeah, but you felt like you were dying for a lot of that time.” It isn’t an easy road to walk.
The catharsis, inner emotional changes, and trauma solidify the more I heal. “Yeah, that was really really bad, and no one really understood. For a really long time.”
I am trying. I am trying not to place blame. I am trying to be objective and realize that the toxicity of society is no one person’s fault. Civilization comes with trade-offs. The very same housing which almost killed me, is also the same housing which has offered people protection and stability for a hundred years. I get that. I’m not stupid. But it is what it is. These houses tried to kill me, and that’s just the facts of the case.
So, I am a work in progress. I have a churning storm of emotions inside me which I cannot always control. I am trying; I am doing the best I can. I am not giving up. I will continue to pursue
I will leave you with one final thought. And, ironically, one final misunderstanding. Funny, isn’t it? This is the idea that “mold avoidance has been so traumatizing for Bryan.” This is a misunderstanding that is prevalent among family and friends. They think that all of our traveling and moving and purging has been “so, so hard, compared to the stable life we had before.”
Of course, there have been difficult aspects! No question about it. But, think of a fox who escapes a hunter’s trap which he thought he would never break free from. As the fox runs with glee and happiness through the forest, as fast as he can to get away, of course he may stumble over some branches and get a little muddy. That is basically like mold avoidance. It IS inconvenient and a bit of a pain. But the glee and happiness and stunning surprise of having another chance at health and life, is 1,000x stronger and more overwhelming. The mold avoidance part is just a tiny inconvenience compared to the Breaking News Headline: “Dude, you aren’t gonna die! In fact, there is a REAL PATH for you to take back to health!” This is remarkable after SO MANY years of false paths, failed paths, disappointing paths. Mold avoidance is the path away from hell, away from the flames. It is a joyful, incredible path. It is a path many people who are dying never have the luck of finding. If chemotherapy patients are willing to endure the gut-wrenching side effects of that therapy, for just a SHOT at getting better, why can’t I go camping? It sounds funny when I say it that way, but it is actually true. Mold avoidance at its very purist, is just camping. No one really loves camping for as long as I’ve been camping, but it sure beats chemotherapy. I know that for a fact. And the chances of success and healing are also a lot higher than the chances of surviving a vicious cancer.
And so: don’t pity me. I am GRATEFUL. I am the happiest I’ve ever been. Yes, debilitating chronic illness IS horrible, sad, and destructive. And yes, I AM happy to be getting free of it. And no, sadly, all of those years I was “living a normal life” (according to outside eyes) were not good years at all. They were awful. You just never saw it. And it wasn’t your fault.
And this is just another sucker-punch in the progression of feeling misunderstood and marginalized. All of those years when I was in dire shape and debilitated, the sympathy and understanding were lacking. But now, all of a sudden when I am on the road to being well, there is this burst of mis-matched sympathy and condolences which are completely disjointed and out of balance with reality. It is as though as the animal escapes the trap, there is one final sucker-punch to the ass when he’s scampering away.
So now you can see why I may appear to be angry: with you, with my previous life, with my previous “stability,” and with the people that were “helping me.” While I can intellectually understand that these things weren’t bad on purpose, I experienced them as bad, or at least, bad some of the time. That experience is drilled into my soul by the force of thousands of days of demoralization and suffering. And the new-found liberation, freedom, vindication, and validation, tends to cause a foul taste in one’s mouth toward the obstacles which stood in their way for so many years. That’s just how it is. It is human (and animal) nature. I didn’t choose it. This is the way it works.
But I’m still trying. To sort the good from the bad. So please understand that this is a process.
I’m going to end this here. I could write ten more pages. But you get the point.
I’m going to leave you with a few links.
- Ana Harris’s blog. She has walked a similar road, and shares her emotions, struggles, and victories in many blog posts. http://anaharriswrites.com/
- A YouTube video I made on this struggle: https://www.youtube.com/watch?v=bdMoo7o1ydY
- A letter I wrote to help mold avoiders explain their journey to their families:
http://lymebook.com/bryan/wp-content/uploads/2019/10/mold-avoiders-letter.pdf - A Word Doc with some mold avoidance basics:
https://docs.google.com/document/d/1JiT7oL5nTKMDLIYnPwYwyOwpOfD4gT4dzMUTT2ttB6A/edit?usp=sharing
EPILOGUE: This is a post I made on the Practical Mold Avoidance forum. I think it is very applicable here.
Imagine someone being so desperate and motivated to heal, that they go to a doctor’s office, get 17 blood transfusions in 2 months, and then subject themselves to a drug regimen with dire and horrendous side effects.
AND THEN. They go through a bone marrow transplant which requires isolation due to suppressed immunity, so they aren’t able to have physical contact with their spouse or kids for MONTHS.
AND THEN. They do another regimen of horrible drugs (chemo).
All of this, just to have a 40% chance of survival.
Yes, this is a true story. My friends are dealing with leukemia right now. Of course, it is very sad and they are making the best choices they know how to make. EVERYONE understands their choices, and supports them, as do I.
Yet, people think it is SOOOOOOOOO weird and unacceptable that mold avoiders take the steps WE need to take to have a chance at health. When, in reality, our measures are much less risky, invasive, and toxic. In fact, our methods usually just mean trying to live more like humans have lived for millions of years, before all of this pollution and toxicity.
AND YET. We are still criticized, looked down upon, and belittled. Maybe not always overtly, but certainly implicitly.
I have a big problem with this, and I’m very mad about it. As if for some reason, we are less human than cancer warriors, and deserve less of a chance at health.
