Where's the Poop, Robin?
Where My Healing Was Hiding
Part 1: Up-Root Causes
Trigger Warning: This series discusses controversial and critical views of Chronic Lyme disease, chronic illness, mental illness, trauma, health, medicine, religion, politics, and just about everything. It is intended to express my personal perspective, for exploring the many facets of physical and mental well-being that I found conducive to healing. Some ideas may cause discomfort if one has not experienced a similar stage in their journey, and/or one has not found the resources to understand them in their intended context. I explore paradigms that I myself at one time considered offensive, but in my healing journey have found the capacity to inquire and even embrace. I am not a medical professional and this is not medical advice. Please engage with these thoughts only relative to your individual capacity to receive them, and allow yourself safe distance if you find them overwhelming. Personally, I believe our triggers are our greatest teachers if we learn to converse with them gently, but one must first come to a place of internal safety.
So, big news in the Joyclam universe– Lyme, Bartonella, and Babesia have been declared eradicated / in remission by two separate doctors, by two separate means of diagnosis. I’m in remission. This should be big-font, huge announcement, throw-a-party type of news.
But, as with the initial diagnosis – wherein no one looked me in the eye and said affirmatively, “You definitely have Lyme Disease,” until a year into treatment – I’m suffering major Impostor Syndrome believing I’m really “better.” Because the diagnosis, treatment, and testing surrounding Chronic Lyme Disease is so uncertain and controversial, there’s really no (affordable) way to prove either diagnosis or remission. No one has the legal (medical) permission to look me in the eye and say affirmatively, “You are cured!” They have to play semantics with the patterns they are trained to detect, and I have to go with how I feel.
And I don’t feel “well.” I’m not “healed.” I’m not “better yet.” I’m not able to work, still have chronic fatigue, food and chemical sensitivities, severe sleep disturbances, and brain fog.
However, relatively, I’m exponentially better! I have more energy, I am very slowly regaining some mental clarity, am able to go for longer periods between acupuncture tune-ups, and managing with 75% less supplements (and zero prescription medications). I’ve been (masked, properly distanced, and essentially oiled) to appointments, funerals, weddings, vacations, and parties without contracting COVID, a testament to my stronger immune system and the effectiveness of my self-care habits. Personally, I feel reborn, psychologically reinvigorated, and ready to start navigating a return to life and society.
But I would say I’m in the “terrible twos” of my new life: able to mobilize and feel immense emotions – both wonderful and wounding – but limited in my capacity to express them articulately or understand their causes and implications. That’s a fancy way of saying I make messes, babble too much, and throw some tantrums. But I also give myself many gold stars for handling my breakdowns with more maturity than my real twos (or any age, for that matter.)
I’m excited about remission from Lyme, but what I’m left with is an Unknown, bringing back all the original trauma of having a “mystery illness,” and plunging me back into the territory of isolated, controversial, and shamed into silence – so what’s still wrong with me? Is it all in my head? Am I actually faking remission; am I in denial? If the tick-borne diseases are gone, yet I’m still chronically unwell, it means there’s something beyond Lyme (et. al.) that I have to look at. And I’ve already overturned every damn rock… so now what?! This uncertainty – not having the answers to my own body and life – just takes me back to square one. Sick.
The question is, am I going to retrace the exact same steps around the four corners of “square one,” which ultimately lead back to the starting point? I could stay firmly planted in the Chronic Lyme paradigm of “overwhelmed with toxins” and their residual damage, and feverishly absorb information and nutrients to repair my defenses and nerves and muscles and hormones and amino acids, and detox and exercise and yoga and hook up machines and devices and undertake another 6 years of being a biological search-and-destroy mechanism. Dr. Richard Horowitz provides an excellent (exhaustive or exhausting, you decide) checklist of factors in the MSIDS model for this paradigm. But I have discovered other, often taboo, factors to chronic illness, which I would like to approach with a gentle and compassionate inquiry, rather than stay on the square path of doctors and pills and procedures in a medicalized obsession with destroying the enemy. I’ve found my life works better as a spiral than a square: I recognize the familiar pattern, but if I add exponential lessons learned and new insight to the formula, I will always move onward and expand. There is no “square one” to regress back to, and no corners to get stuck in. Only growth.
Instead of devouring more materials from the LLMD’s, -DO’s, -NP’s, -OB/GYN’s, -D.D.S’s, -DC’s and -WTF’s, I’m entering the dangerous territory of terrain theory vs. germ theory. Asking provocative and “foolish” questions like “Wait a minute, why is it still called germ theory?” Casting some side-eye at all these signs claiming “science is real” and wondering where “real science” lies in the Venn diagram of fact, history, culture, perception, theory, individual experience, spontaneous remission, bias, Béchamp, and Semmelweis. I’ve already adopted Daoist philosophy in Chinese Medicine, and reject any biomedicine and psychology which does not acknowledge the inseparable roles of body, mind, and spirit in achieving and maintaining health. (And you can call me crazy, but... I’m in remission!) As such, I can’t possibly treat my remaining “dis-ease” the same way I did the first time. Now that my immune system no longer needs the help of antibacterial herbs to eradicate pathogens, what other factors are there that are causing the same symptoms?
Same Old Question, Different Hypothesis
I’ve spent a lot of time, most of the last year in particular, thinking about the nature of Chronic Lyme Disease and its intersection with other physical and mental diagnoses; for example what makes the 20% of Lyme patients who develop chronic symptoms unresponsive to antibiotics? Some didn’t get a bullseye rash and treatment was delayed, but some went on a standard course of antibiotics immediately. Many have certain “biomarkers” or “gene mutations,” but not all. Same with mold, heavy metals, jawbone cavitations, gallbladders, autoimmunity, etc – some have it, some don’t. Some treat it specifically, some don’t. Some never get sick, some get better, some don’t. There’s no single measurable factor that turns Lyme into Chronic Lyme.
Or COVID into “long-haul COVID,” for that matter. The pandemic has offered a ripe environment for these considerations, particularly since “long-haul COVID” and Chronic Lyme/PTLDS share virtually the same symptomology and medical mystery: various systems under attack, high inflammatory response, no tests showing definitive pathology, attributions to a variety of causes such as damage from the original, but now-eradicated, infection; undetected active infection; autoimmune antibodies; psychosomatic responses, etc. Chronic Lyme and Long COVID are essentially the same disease. A spirochete and a protozoan (Babesia) and a coronavirus can cause the exact same disease, which has me poking all kinds of holes in germ theory and Western medicine in general.
Have we really not figured it out by now? If you dig into the research, these aren’t new phenomena. Experts have been studying the nature of diseases, those who get them, and those who don’t, for millennia. Why some and not others? Chronic disease supposedly comes down to co-infections and comorbidities. But we all live in a toxic soup. The triathlete vegans get taken down too. Why some and not others? Just unlucky? The urgency is, if I don’t understand my own story of illness, how can I possibly heal it, and how will I know what to pursue or avoid to prevent relapse? Am I at the mercy of “approved medical treatment” forever? Must I resign myself to chance for the rest of my life, with the constant low-grade fear of spirochetes? Ay, there’s the rub!
The thing is, some systems of medicine – classical Chinese Medicine, Ayurveda, quantum physics, terrain theory, etc. - have already figured this out. Some thousands of years ago. And even more modern psychoneuroimmunology has caught on. We just hardly stand a chance of learning about it against the wealth, authority, and illusory prestige of “modern science” (the arrogance of which is, fortunately, slowly crumbling in the face of even more actual science.)
Queen of My Castle
In general, what besieges and overtakes a castle is more dependent on the condition of the castle and its defenses than the strength of the invading army. It’s the immune system. The wei qi. The common factor in all chronic disease is a defense system – the immune system – which has fallen to a state of inadequacy or disability, whether against outside pathogens or its own mutinous cells. So my new questions are: why am I going off to war with pathogens and toxins without figuring out why my castle was built of sticks and straw in the first place, and why am I not learning how to build it out of bricks (or iron, as needed for the bigger badder wolves of our era)? Or even more preposterous, can I just let them in if they peacefully agree to live by my constitution?! Shouldn’t medication and surgeries be the militia we send out in emergency to fight for us only in order to buy us time to reinforce the castle? What’s the point of killing an enemy if the castle falls too, and I'm sacrificing all my soldiers (blood cells, mitochondria, and actual body parts)? What's the point of winning a war if my castle - my own body - is utterly destroyed by the time it's over?
As it is, Western medicine sends out the army tilting at every windmill and tells us our castles are supposed to be flabby like this… eat, drink, and be merry; there’s a pill for every ill... or we'll just cut it out! You don't need a gallbladder... or both kidneys... or a uterus... or most of your liver for that matter! Never mind the castle, we've got the world's greatest military! (Until chronic illness comes along that we can't figure out, then we'll just gaslight you for making stuff up.)
To put the metaphors aside, we know by now that the human immune system is an amazing and intelligent force for keeping our bodies working, and disabling, devouring, and removing pathogens and toxins, if we take proper care of them. Why are we not putting more effort into strengthening and protecting our immune systems – our very bodies – rather than leaving people to suffer ever-growing, ever-more terrifying diseases with only the frail hope of “we’re about to make a big discovery” in pharmaceuticals and technology? The former, at this point, is merely about education and public awareness – we’ve known how to be healthy for thousands of years! Nutrition, plants, and herbs can fight pathogens without destroying our own bodies too (antibiotic literally means "anti-life," and that's precisely how it feels after two years on pharmaceutical cocktails.) The latter is, unfortunately, driven by money, power, ego, fear, and at best, refusal to open our minds beyond the prevailing paradigm. (As long as there are entities profiting in the $ billions from human suffering, we're going to have severe conflicts of interest.)
We’ve largely been besieged by the “science” of genetics: everything is hereditary, everything is a genetic defect; we can’t change the materials we’re given to build the castle. (And if we find a way, you can bet your culet insurance won’t cover it!) But now we’ve got the secret tunnel for smuggling in superior materials and closing the books on faulty instructions, called epigenetics – the power to change our gene expression with our own control. And our doctors are not telling us about it. What’s more, the Western paradigm of Chronic Lyme (or viruses, or autoimmunity, or cancer, or terminal illness) is to qualify and quantify ever more invaders (pollution, viruses, mutations, radiation, etc.) to credit for the original weakened state of our castles. We’re merely victims of nature (or toxic actions of exploitative political and economic systems, if we’re being bold). It conjures up a great loathing and then fear of both the vulnerability of the castle and the force of invading armies; it studies the stunning intelligence and adaptability of these pathogens to hide, shape-shift, mutate, and trick our bodies, and it develops ever more potent weapons to kill them, weaken them, sabotage them, hunt them down, destroy them. Kill kill kill! We are always, more or less, at war with our environment and our own bodies. And never do we hear about the stunning intelligence and adaptability of our own bodies.
The cruel irony is that this war – more particularly the fear that drives it – equals stress. And stress equals a weakened immune system. As long as I am in “survival mode” – the sympathetic nervous system (“fight or flight”) is engaged at full force – I will have a weaker immune system. (Stress releases immune-inhibiting hormones like cortisol; this is what steroids are based on: the natural phenomenon that stress hormones shut down the immune system so that the body’s energy is directed to fighting immediate external dangers like tigers and murderers, rather than working on internal functions like long-term immunity, digestion, work, and pleasure). It takes rather the “thrival mode” of the parasympathetic nervous system (“rest and digest”) to build immunity. This is what I’ll call the Immunity Paradox of chronic illness. The harder we fight disease, the weaker our immune systems become. As long as I have more fear of illness activating “fight-or-flight” than peace, love, and gratitude activating “rest-and-digest,” I will be more ill than well. Health comes from resting smarter, not fighting harder. (However, resting with ignorance – with outright denial – will make no positive changes in our defenses, and often equates to not resting at all, but powering through, to our detriment.)
This isn’t just some woowoo guru moo-shu advice, this is the neurobiological science of the limbic system! And yet, how can one possibly feel peace and calm during epidemics of disease-carrying ticks, deadly viruses, environmental toxins, depleted soil, inflation, poverty, GMO’s, and world war, when we are constantly barraged with the message “THEY’RE TRYING TO KILL YOU!!!”? “Keep calm and carry on” will save your life… but is it not absurd and offensive in the face of our massive struggles?
I call Lyme “The Impossible Disease” for its necessity of opposite truths. Like, to heal, you have to take control of your health, and you have to give up control of your healing timeline. You need social support and you have to find your own path alone. You have take tick-borne disease seriously, and you have to stop being afraid.
But in the Immunity Paradox, this makes sense. I had to stop fighting – literally, get my body out of “fight-or-flight” sympathetic mode – and start resting in the peace of parasympathetic “rest-and-digest” mode. This meant finding a doctor - and an entire health system - I could actually trust to not make me sicker, and making peace with my health and my body, for better or for worse, to life or to death. I had to stop fearing the intensity and toxicity of Herx reactions (in my case, by eliminating them). I had to stop being afraid that these “tigers” of spirochetes might kill me tonight, even when I feel like they’re going to kill me tonight. Fear shuts down the higher reasoning in the prefrontal cortex, barring receptivity to new ideas for escaping, moving, and being; we can’t do the research or wrap our heads around treatment plans. Rest opens up curiosity to explore with the higher brain all kinds of wonderful possibilities – change of strategy, mobility, new life. Moving out of fear finally allows the body to move into parasympathetic mode, in which it heals. Paradoxically, when I accepted chronic illness and even death, and stopped being afraid of it, I suddenly gained the energy to heal and live.
I finally understand my own complicated thoughts around how totally accepting chronic illness as my fate still managed to fan this flame of desire to heal. How “giving up” was my way of “not giving up.” The answer is rest = repair.
Every book I’ve read on spontaneous, radical, or successful remissions, from Lyme to Cancer, points to the necessity of a spiritual component to complete the healing process. This makes sense: only a strong spiritual connection with the Source of life and its meaning can overcome the fear of death and suffering which keeps the motor running on the nervous system’s destructive “fight-or-flight” survival mode. Fear kills. Love heals. True spirituality exists to transcend fear.
In the “KILL KILL KILL” of Western medicine, and the “FEAR FEAR FEAR” of prevention and awareness (well-intended as they are), where is the effort of love and compassion to restore our parasympathetic systems and rebuild our fortresses of defense? Where is the empathy for our own bodies that asks “what firm foundation did you not receive, that allowed your walls to crumble before this enemy?” Treatment plans, particularly as they inch into integrative medicine, are starting to include “immune boosters” and nutrition as complementary therapies… but what would happen if gentle self-loving protection and strength was the main focus, rather than being secondary to “Fear! Kill! Destroy!”?
I intend to find out. So far, the results are quite affirming. I finally understand that there can be no “quick fix” to Lyme or any other chronic/terminal illness, because it’s the journey that heals. It’s the transformation from our ingrained, conditioned fear to a purposeful, even radical, love, gratitude, and rest; that takes time, just as there is no “cure” for childhood but to wait and grow (with wisdom).
This just kills me, knowing that for all I know, I can’t prevent anyone’s suffering. I still struggle with the audacity of the resulting message: I healed because I learned to love and accept myself as I am, however I am. In some ways, I think that can be true for everyone. But where my gut, heart, and mind leads me will be different – maybe even opposite – of where someone else’s gut, heart, and mind leads them. Maybe even to a path of not healing. And we can both be right. Impossible disease.
I’ve had to explore rather scary and potentially insulting possibilities to get myself here. If the original weakened immune system (which we assume is the basis of developing chronic Lyme) is the result of other “invaders” - toxins, pathogens, mutations; gluten, EBV, heavy metals, radiation, vaccines, – then I only engage in further war on contaminants and constant fear of adulteration: war on viruses, war on vaccines, war on genetic mutations, war on food and GMO’s, war on EMF, war on mold, war on life itself. War = stress = disease. The cycle continues. This is handing my power over to nature, medical systems, political systems, environmental policy, something, or someone else.
If, however, I come to believe that the weakness came from within, and that my defensive walls were of poor quality because I was given improper materials, or more importantly improper instructions, I can harness the power of epigenetics, of wisdom, of learning new ways of building strength from within. If my weakness was ignorance, my strength is knowledge; if the disease was fear, my healing will be courage in truth. If the error was within me – particularly my mind and conditioned beliefs – it means the correction is also within me – to recondition. This paradigm of healing through growth (rather than healing through killing) imparts the power of creation and re-creation, which is stronger than the power of destruction. Love = renewal = wellness. This is taking back the power to change and heal my own life.
Love heals; fear destroys. Love the body, by honoring its innate intelligence to create, regenerate, and thrive, and it will heal. Fear the body, scolding it for being weak and stupid and betraying and deficient, and it will succumb to anything that will put it out of its shameful misery. And – preposterous but true – if these pathogens are now an integral part of my microbiome, I can even love them too, as a symbiotic part of my self. They just might become respectful law-abiding citizens.
I do have options. There is no shortage of experts on hand to test and diagnose me with chronic fatigue syndrome, ADD, traumatic brain injury, PTSD, hypothyroidism, adrenal fatigue, jaw misalignment, slipped discs, retinal holes, mold toxicity, parasites, depression, anxiety disorder, hormonal imbalances, or a plethora of other labels. I can choose to seek more diagnoses and labels and “answers,” in exchange for more pills and treatments and protocols.
I’m choosing, rather, to spare myself more medical trauma (which most definitely activates my sympathetic nervous system’s stress response!) by slowing down and even stopping the search for answers and diagnoses from “experts”, and instead welcoming compassionate and resonant healers into my life, if and when they happen to cross my path; but mostly, I’m choosing to hold myself in compassionate love, and ask tough questions of my heart instead.
The first question, to summarize, is this: is it always an external or inherited factor weakening the immune system of patients who succumb to chronic illness, or is it ingrained fear/stress from a worldview, environment, and/or upbringing, that may have been switching on faulty genes or eating away at the immune system for decades before the triggering tick-bite/virus/trauma? For all the talk of finding the “root cause,” are too many of us never getting to the real root: the mind, the belief system, the worldview that perpetuates stress and fear?
For me, I believe this was so.
Many medical systems believe that trauma/stress is the cause of all disease, all illness from acute colds to terminal illness, through the weakening of the immune system. All disease, therefore, begins with mind management. As offensive and absurd as it may seem (walking a fine line across psychosomatic gaslighting), the implications of this paradigm could be wonderful: we could heal ourselves with love and gratitude, regardless of access to medical care, technology or medication, vaccines, or socio-economic status. Free universal healthcare.
This is NOT to say pathogens don’t wreak serious havoc, and shouldn’t be treated as swiftly as possible, by whatever means chosen through informed consent. So many people have suffered from the lack of quality healthcare and the ignorance of medical systems; they’ve been misdiagnosed, mislabeled, and mistreated for decades, for example, for mental illness, which was really a bacterial, viral, or malignant infection of the brain/nervous system. Western medicine needs more compassion for the human experience, as well as advances in testing and treatment. What I am saying is that illnesses that do not yet have a definitive treatment, particularly chronic and terminal ones, could benefit greatly from a more holistic approach that fosters the courage to dig deeper into the mind, body, and spirit of psychoneuroimmunology. And perhaps many illness can be prevented in the first place. Study the biology, yes. And study the wonders of human resilience. If one thinks it sad that nature moves faster than global vaccination efforts, perhaps one can be happy to learn that the neuroplastic autonomic nervous system moves faster than you can say “Bill Gates.”
This is NOT to be misunderstood as being at fault for your own illness. There is indeed a very fine line between victim-blame and victim-empowerment, the two sides of the Coin of Responsibility, and fear of crossing it (and the dire social consequences) allow few people to speak the very words that might heal. You could not control, and you are not to be blamed, for the things that happened to you, the circumstances that befell you, the resources that were or were not offered to help you cope with them, or your resulting disease, self-image, beliefs, and worldview. You are not responsible for what you were or were not taught. You do not deserve, nor did you earn, your illness. No one should suffer the pain, shame, or fear that you suffer. Period.
AND NOW, armed with ever-emerging new options, alternative perspectives, unconditional love, wisdom, and self-worth, you do have the power to choose a new way of coping with, grieving, learning from, accepting, and changing the way you view and integrate these undeserved circumstances moving forward. Is it fair that so many of us spend our lives undoing someone else’s ignorance or crime? No. Is it fair we have to heal ourselves from things we did not choose ourselves? No. But is it fair that we must suffer forever from those things we did not choose? No. At least we can choose our unfair: the hardship of healing or the hardship of hurting.
I don’t know - this is the age-old question of philosophy and theology - whether we choose the opportunity to heal, or whether the opportunity chooses us. I do not know to what extent I played a role in my healing, and to what extent I was just at the right place at the right time. I don’t know to what extent we are just pawns of a Greater Purpose, whether our paths are predestined, whether it’s possible to heal when you are chosen to shine through suffering, and vice versa.
But I guess what I want to say for sure is that it’s okay to change. It’s okay to believe in the impossible and have ridiculous faith. It’s okay to not know, and it’s okay to feel weird and lost and afraid while you’re learning how to not be afraid. It’s okay to love yourself, because a house – or body – divided against itself cannot stand. It’s okay to stop seeing your body, and anything that happens inside of it, even Lyme, even cancer, as the enemy. It’s okay to take control of your body, but the only healthy way to do that – the only acceptable way for anyone to control anything – is through unconditional love.
And painful as it is to witness or experience suffering, it’s okay not to change either (though we’re going to find our tribes shifting, as we all need to set boundaries for our mental health and energy; friends will come and go based on your choices, so be your own unconditional best friend). Some people won’t find the resources to change their minds, and some circumstances won’t change. Either way, to be sick, or to be well, should be to be loved no matter what. You don’t have to heal. Many religious adherents find it easier – even morally superior – to suffer, than to bear the crushing responsibility, paradigm shift, or “undeserved grace” of health. It’s okay. We all must do what brings us peace. For some, that’s asking ever more questions. For others, that’s accepting the established answers.
What I offer here is simply my story of changing from trying to be a joyful martyr to being a joyful survivor, and the dominoes that fell in between. The change in my health began with a change in my mind, and it’s been a hard-fought battle as much as any medical regimen.
In the next parts, I will explore the extremely uncomfortable confrontation with internal factors that contributed to my weakened defenses, long before the tick ever sniffed out my bare skin. Though their stories are different, I’ve witnessed similar patterns in other survivors and sufferers that makes me wonder… is this really just my path? Or is it wider than I think? As I write my own survival guide… is it only just mine?
Continue to Part 2.
Though I wrote the majority of this segment before finding their books, I would like to acknowledge the role of two particular authors in finding my courage to share on such delicate subjects, as I no longer feel alone or “crazy” in this stage of my healing:
Katina I. Makris, for “Out of the Woods”, and
Wyatt Palumbo, for “Don’t Kill My Lyme”.
Further resources: Gabor Maté, M.D., "When the Body Says No"
Joe Dispenza, "You Are The Placebo"
Louise Hay, "You Can Heal Your Life"
"Heal" documentary and podcast