Where's the Poop, Robin?
Where My Healing Was Hiding
Part 4: Digging It Out
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.
This is Part 4. In Part 1, I discussed my paradigm shift from germ theory to terrain theory, and highlighted the role the Sympathetic Nervous System plays in susceptibility to chronic illness when dysregulated by chronic fear and stress. In Part 2, I began to question my narratives of Chronic Lyme, and shared my journey beyond pathogens as root cause, particularly stress. In Part 3, I had to face the fact that my own Lyme journey began after a hellish 9-month withdrawal from 16 years of prescription antidepressants, and my triggers made it clear my body was still holding onto that trauma and causing symptoms, even though the pathogens were gone.
I’ve struggled with narrating my story because it, like all things Lyme, healing, and life, is not a linear progression. It’s a twisting, forking, doubling-back… well, Jeremy Bearimy. (Yeah, Spoonies speak fluent Netflix, that’s just the way it is.) The poop uncovered in Part 3 and what I discuss next appeared simultaneously. They feed on each other, and are so intertwined, they’re hard to lay out on a timeline. When one issue gets too overwhelming to think about, I shift to working on the other. And when I need a break from that processing, I shift back, or give myself a break from therapy to enjoy my new levels of healing which have bloomed in the meantime. When a troubling symptom relapses, or a strong reaction is triggered, I go back to my gentle self-inquiry. It’s amazing what pains can be resolved with this care.
I’d been learning about the Mind-Body connection and exploring how experiences can be wired not just into the brain through memory, but also into the body, through muscle memory and chemical messages delivered through the autonomic nervous system. To heal the lingering Chronic Lyme symptoms, I started with the most simple and obvious source of memory and messages that might be scaring my body into constant “fight-or-flight” mode: the terrifying symptoms of Lyme and co-infections themselves.
I noticed I struggled (well, downright failed) with healing modalities like “breathwork” exercises and meditations that begin with “focus on your breath.” I finally stopped trying to do them altogether when I realized that instead of calming my nervous system as intended, breathing exercises were actually triggering anxiety attacks, from the reactivation of memories concerning Babesia air hunger. I had spent so many days and nights light-headed, nauseated, and terrified on the couch, gasping for air, believing I was going to die. I’d needed to remind myself to keep breathing, then was afraid to sleep (and often woke up gasping) because I didn’t trust my autonomic nervous system to remember to keep my lungs breathing and my heart beating (and perhaps, sometimes it really didn’t). I was constantly afraid of dying in my sleep from the pathogenic disruption of my autonomic nervous system. This is a serious condition, so I certainly believe in medical intervention when the immune system needs critical help in eliminating pathogens that threaten the heart, lungs, or brain.
But my anxious response to supposedly-healing breathing exercises made me realize that even when those pathogens were healed, my fear, insomnia, and trauma in my lungs might remain because they were stamped into my brain and body and nervous system. PTSD. (I believe this is a very important observation for people with long COVID, given the trauma of pneumonia, ventilator use, and mass fear perpetuated by constant media coverage. There is nothing more traumatic about an illness than the best experts in the world saying, “We have no idea how to help you; if we guess lucky, you’ll live.” And this is exactly how they address treatment-resistant Lyme and Babesiosis as well.) PTSD. So chronic illness does not necessarily mean chronic infection, much like the (very real) physical response of a veteran does not mean they are currently still in the (very real) war zone. It’s all real… but it’s not necessarily the same cause-and-effect now as it was then. Fear (and thus illness) can remain even if the danger is gone. This is so hard to discuss in Chronic Lyme, because most patients are still traumatized by the words “there’s no evidence of any infection” – it sounds like the same denial and gaslighting they faced at the beginning. Yes, the ignorance of the medical experts and the inaccuracy of Lyme testing is horrible and unjust, and yes, we had infections that were missed and we deserve to be seen, heard, and treated with dignity. AND, now that I’ve been properly tested and treated by a doctor I trust, is it time to put aside the search for lingering infections and learn about the lingering effects of trauma? The mindset and paradigm of illness can be the hardest part to overcome in healing. If we remain in “germ theory” then I will always be “infected” as long as I have symptoms. If I open up to terrain theory and mind-body trauma, maybe I can heal the symptoms, with or without the presence or elimination of infection. As I mentioned in Part 1, we live with viral infections all the time, yet never care much about their relapse. Can we do the same with Lyme, if we process the underlying traumas?
So I started the mental healing journey with deactivating trauma signals being sent to my body from the memories of Lyme Disease symptoms. And then I had to admit that I had anxiety, back pain, insomnia, nausea, and depression before Lyme Disease. Which meant that there could be signals and symptoms being activated from traumas before the tick bite. Lyme was not the beginning nor the end of my symptoms, and eradicating pathogens would not be the end of my illness.
Where’s the poop, Robin?
I knew antidepressant use – not just the final withdrawal, but the entire 20-year story of being prescribed them and labeled as “mentally ill” – was traumatic. But, as I discussed in Part 3, I was not ready to process that trauma yet; it was too unsettling and I didn’t feel safe. However, I was comfortable taking a more pragmatic approach and exploring the biological (rather than mental) mechanisms of withdrawal that could have made my immune system vulnerable. I wanted to look for reasons why actual brain injury or inflammation from long-term pharmaceuticals might be causing the worst psychiatric symptoms in my Lyme Disease. If I knew what part of my brain was compromised, maybe I could find supplements, therapies, or even meditations to begin restoring that area of brain function. I had seen the “Heal” documentary and was very interested in using the power of my mind to heal my actual body, even the physical brain itself, without being re-traumatized by more doctors, prescriptions, or unhelpful therapists. But I didn’t know where to focus my visualization.
In one of the first miraculous “coincidences” that I credit for my healing, I soon found a copy of “Healing ADD” by Dr. Daniel Amen in a Little Free Library box. I’d previously seen an LLMD who was keen on diagnosing all their patients with ADD, a symptom pattern I confess, but a label I reject. I thought it might be an interesting read, as Dr. Amen’s name is a big one in the brain injury and depression circles, but mostly I thought it’d be nice to have a book on hand for parents I knew struggling with their children’s behavior. (I was, for obvious reasons, very keen on sparing children diagnostic labels and psychiatric prescriptions!)
I took the book home and browsed through it, quite disappointed that Dr. Amen included so many references to pharmaceutical drugs for helping with certain brain abnormalities. His alternative treatments were good advice, but I’d already done all those; I didn’t have an extra $5,000 laying around to travel to one of his clinics and get brain scans. Nor did I wish to inject my poor brain with any more chemicals for imaging, or risk being prescribed more pills, which he seems to credit a little too much (for my taste) for helping patients.
Then something caught my attention.
There is a chart at the very beginning of the book summarizing what Dr. Amen has classified as 7 types of ADD, finding that each type correlates to a set of symptoms and abnormalities in specific brain regions. The chart categorizes the different diets, supplementation, and medications that tend to treat each type of ADD. I honed in Type 3: “Overfocused ADD.” What first struck me is that all the medications listed for the other types of ADD were ones that I’d never used in 20 years of playing psychoactive roulette, or a few that I’d tried but were unsuccessful. But the pharmaceuticals helpful for Type 3 were unique, and included all the drugs I’d ever been prescribed for depression with any amount of success (SSRI/SNRI’s). Further, the dietary recommendation for Type 3 was the only one that was different from the other six, and reflected what I’d discovered for myself doing the Whole30: less protein, and more good carbs made me feel better than what is typically recommended by holistic doctors who treat depression. They usually want you on more protein to build a brain full of neurotransmitters. Two weeks into the Whole30 I was so sick of meat, and just wanted vegetables, vegetables, and more vegetables!
With this mini-biography staring me in the face, I turned to the chapter on Type 3 ADD and my mind lit up like a lightbulb. Yes! Yes! Yes, that too! Here was my experience! ADD, but not. Depression, but not (I didn't really suffer deep depression until I started medication). Actually so organized and focused that doctors would never think to diagnose an attention deficit. But perfectionism! Stubborn as hell! Oppositional! Obsessive negative thoughts! Anger! Family history! And what really stood out to me was “trouble shifting attention from subject to subject.” This is me. This is everything. My attention is not deficient when I’m completely absorbed in a task, but try to pull me away from my work, and I. will. cut. you. My worst rage comes from being interrupted, from my plan being diverted, from someone breaking my precious focus. And I’ve always been that way. (Now imagine this brain in a child whose parents’ favorite words are “Just do what you’re told, and do it now!”)
It was still hard to look so deep into my childhood diagnosis, so mostly at that time I focused on how all this explained a Lyme symptom that drove me nuts: I would go to do something, stop mid-step, and turn back to do something else. Then turn around and decide to complete my original task. Then think that maybe if I do the other thing first, the second will be easier. But if I don’t do the second thing first, I’ll forget about it by the time I finish the first. I would stand in the middle of the room, shifting from one foot to the other, lurching left and right, completely unable to decide what task to do first. I just called it “brain fog.” That’s Lyme, right? But I’d be doing the freaking Hokey Pokey just trying to get a shower: unable to decide if I should get undressed in the bedroom or the bathroom, where do I drop my clothes, should I run the washer so it’s done by the time I get out, or will that use all the hot water, or do I need to do it now because I won’t have energy after my shower or should I just re-wear the same clothes or do I look like a slob and why is my house so messy, oh my god, my husband is going to leave me! The brain disruption, the Spoon management, general laws of physics and consumption (and body odor), and my own guilty need to just get stuff done were competing for my focus. And I couldn’t decide where to put it. Attention deficit from too much focus on details and consequences. Melt down.
Dr. Amen explains this very thing in Chapter 8, “Type 3: Overfocused ADD”:
"There were brain-imaging studies that suggested there was overactivity in the anterior cingulate gyrus in patients who had obsessive compulsive disorder (OCD)… [and] I saw hyperactivity in the anterior cingulate gyrus in many patients who did not have OCD. But I noticed a common thread with OCD. Patients had trouble shifting attention. Researcher Alan Mirsky wrote a book chapter highlighting the anterior cingulate area of the brain as being involved with shifting attention… When there is increased activity in the anterior cingulate gyrus a certain cognitive inflexibility is present… The anterior cingulate area of the brain is heavily innervated with serotonin neurons.” [emphasis mine.]
This is exactly what I was looking for. Not only did I have a brain region responsible for my worst remaining Lyme symptoms (brain fog, mood swings, anxiety), but this same region explained all my symptoms of “hereditary depression” – defiance, disobedience, the insanity, and hatred of change that “runs in the family.” I needed this connection. I needed to integrate my life into one whole story, rather than dissociating all the Childhood years, the Pharmaceutical years, the European years, the Withdrawal years, and the Lyme years. I needed to understand why I was the way I was, and I needed a better answer than “you have an incurable condition,” be it depression, Lyme, or ADD.
A new theory of my illness emerged that I wanted to explore: my anterior cingulate gyrus, for whatever reasons, was responsible for the Major Depressive Disorder (which perhaps was really Type 3 ADD), and the medications (SSRI/SNRI) I’d taken for 20 years targeted that specific region for its serotonin receptors. In withdrawing from the medication, I left my anterior cingulate addicted, angry, and confused as hell. I read over and over that Lyme will target already-weakened areas of the body as the best places to invade, replicate, and hunker down. In upsetting the balance of my anterior cingulate gyrus, did I leave this particular region of my brain vulnerable to spirochetal infection?
I embarked on a journey to find out what it meant, and how to fix it. I read all I could understand on the internet about the basic functions of the anterior cingulate. Again, my brain lit up with recognition. This region isn’t just responsible for focusing and making decisions, but also evaluates moral judgment and consequences, and emotional expression. It is part of the limbic system and serves as a bridge between the “animal” instincts of the automatic lower brain functions (fight-or-flight, survival, heart rate) and the higher cognitive abilities of the prefrontal cortex (rest-and-digest, rational decision-making). This all jumped out at me because of another weird “Lyme” symptom I was struggling with: completely inappropriate emotional reactions. I would laugh hysterically over the dumbest things, until I cried and ended up sobbing. Worse, when something horrible happened, like my husband’s hand slipping and nearly gouging out his eye with a screwdriver, I couldn’t stop laughing. When I was ecstatic, I cried; when I was hurt, I laughed; when I felt sorry, I’d have a meltdown; when I was confident, I’d shake like a leaf. My emotions were backwards! A glitch in the anterior cingulate region would explain this, too! A disconnect between my autonomic biological functions and higher reasoning would explain all the weird and conflicting actions of my mind and body. And maybe the "brain fog" dissociation - that kind of dysregulation didn't make me feel safe or appropriate in society!
So here I had it: the brain region responsible for all my problems, past and present. Could I visualize it in my head? Could I take supplements to nourish my brain and boost neurotransmitters naturally? Could I get acupuncture, could I get therapy, could I do mental exercises to target and strengthen the signals between my brain regions? Could I heal the brain fog without expensive and dangerous psychoactive protocols? Problem was, I was still terrified of doctors and medications. Could I do it alone?
Then miracle #2 happened. I was in a thrift store browsing the bookshelves, when I saw a titled called, “The God-Shaped Brain” by Timothy R. Jennings, M.D. Given my deep interest in the intersection of spirituality and neuroscience, I thought it sounded pretty cool. I opened up the book, and on the first page there is a diagram of a brain. Scrawled across the very top, handwritten by the previous reader, was “ACC- Anterior Cingulate Cortex”. They had taken notes on brain anatomy and function on the first page. This thing I’d never even heard of, which I suddenly found may be the key to my healing, was staring me in the face out of nowhere. My eyes nearly bulged right out of my anterior cingulate cortex!
That book changed my life.
Looking back, I don’t even agree with most of the author’s theology. But Dr. Jennings knows the brain. He knows (and explains very well) how the fight-or-flight response is activated, and how chronic activation from fear fires chronic inflammatory and damaging responses in our brains and bodies. The book furthered my understand of the limbic system, fear response, unconscious programming, and opened up a lot of critical thinking about my deeply-held religious beliefs. It was, without my realizing it, flexing my ACC muscle!
So where’s the poop, Robin?
One day I was sitting in my little tent sauna, trying a mental exercise. If the anterior cingulate cortex functioned as a bridge between mind and body, between emotion and physical expression, and was dysfunctional and needed rebuilding and retraining, perhaps I could exercise it with a very simple childish activity: I would think of a time when I was extremely happy, then put a big joyful smile on my face, in order to connect a mental thought with an appropriate physical sensation. (I had enough sadness and crying in my life to be sure that pathway was already well-fortified, wonky as it was sometimes!) Okay, here goes. Happy memory…
Oh come on, I have plenty of these! I traveled, loved, sang, danced, and won a million times before Lyme! Happy memory!
How about that time I…? Well, no I’m a little cringy about that.
But that time I…? No, that makes me feel icky, too.
My wedding day?! Well… I’m kinda still pissed off about some things.
I had no happy memories. I knew this couldn’t be true. Surely, I’d felt joy over all the amazing things in my life. Yet, when it came time to reflect on them, to find a moment of pure, unadulterated bliss that I could connect in my brain to expressing a big, unabashed, goofy grin… I couldn’t conjure up a single one. It’s not that I couldn’t remember the events that I knew had once made me happy. But every single one had something negative attached to it, sucking out the joy like a tick hanging off a peaches-and-cream complexion. Not a single happy memory made me want to smile.
All I felt was… anger? Grief? Regret?
Guilt and shame.
All I felt about every single moment of my life… was guilt and shame.
Where on earth did that poop come from, Robin?!
I will find out in Part 5.