Dying to Be Well

An exploration of my battle with chronic illness, perfectionism, and dreaming.

There is a saying from Confucius that “you get two lives, and the second begins when you realize you only have one.”

It was a sweltering August, the kind that leaves you hard pressed to sleep with so much as a sheet. I remember waking up and peeling myself out of bed at 8 in the morning. It was a literal unsticking, working against the adhesion of my sweat-slicked skin to the sheets, of my hungover body from the space of fitful sleep. Wrongness clung to me - it had for close to a year - but I hadn’t seen it. Sure, I had seen glimpses here and there of what I was doing to my body. Nights of long drinking turned into drug-fueled early mornings, one substance chasing another, until the threat of work in the morning loomed large enough to attempt sleep for a few hours before it all would start again. I didn’t truly see the wrongness until I had almost destroyed the only thing that mattered to me: my relationship. 

But that morning I woke up and I felt the wrongness linger in my body. This wasn’t right. I didn’t care at that time if I destroyed myself, but I didn’t want to destroy the relationship with the one person in this world that had ever made me feel safe. And so I decided to quit. The booze, the drugs, the late nights. I quit cocaine cold turkey. I heavily reduced my alcohol consumption, though, it would be a year or two before I would find some peace without it. 

Only, that’s when the problems came into focus.

My gut was wrecked and I was bloated constantly to the point of pain. Fatigue made it feel as if I were constantly hauling my body through mud, my life ground to a slog. Arthritis set in in my knees, my wrists, my hands, my hips; my joints howled and creaked. Though I didn’t realize it at first, the week before my period I would become borderline suicidal, absolutely devoid of hope. Once my period came the pain was enough to have me throwing up, crawling on my knees. Nerve tics started appearing in the delicate muscles around my eyes. If that weren’t enough, my anxiety threatened to eat me alive, it danced at the edges of agoraphobia, and lighted on daily panic attacks. Depression would sometimes chase all of this, less a symptom than it was a symptom of the heaviness of everything else.

It is worth noting that I was never a well kid. I was sick often, coughs and colds, more likely manifestations of a deep sense of otherness I felt at school. I didn’t fit in and what’s more, I didn’t understand how to fit in. I watched my peers with a tense mix of curiosity and confusion, desire and fear. As young as 7, I remember being told that I was no longer permitted to read during recess, that I must interact with the other kids. As if I wouldn’t have chosen that myself if I had felt I understood how, god knows how lonely I was. While things at home weren’t much better, a chronically ill and dying father, and parents struggling with their own alcoholism and mental health issues, the devil I knew felt safer, and so I found myself sick more often than not. The coughs and cold might have been a distraction from social ineptitude but the stomach aches were real. They roiled and ached and burned at most times, worse at night, when even small amounts of pressure across my upper stomach from the comforter would prove unbearable. It wasn’t quite nausea, there was no threat of vomiting, just a dull and deep ache that never seemed to go away. It would get worse at times, even landing me in the ER because of the unbearable pain, but most of the time it hovered like a pall at a dull ache. The intestinal symptoms would come later as I entered into early adolescence - bleeding, bloating, general discomfort. I’d be diagnosed with IBS after a round of endoscopies and colonoscopies where diet wouldn’t even be a whisper in the rooms of the doctors I saw. Around the same time, at the age of 13, during a battery of IQ tests, I would be diagnosed with Asperger’s Syndrome, now recognized as Autism Spectrum Disorder. Curiously, of all the diagnoses I received in childhood, this one was cast to the side. 

Those of you that have followed along know that during this time I was also on and off almost a dozen anti-depressants and anti-psychotic medications to treat my debilitating childhood anxiety. This isn’t a story about that so I will keep it brief - but - ultimately, I decided around the age of 17 to quit those cold turkey. A desire to find peace and healing within myself around 20 would lead me to forgo the vegetarian diet I had championed since the tender age of 5 and lead me into my career path with meat. The pressures of starting my own business at the age of 23, starry eyed with little knowledge of the obstacles ahead, are a part of what started the drinking. Lingering social anxiety fueled it as the alcohol melted away my awkwardness but the cocaine - that allowed me to come out of my shell in a way I never had before. It was the first time I felt like I belonged, and belonging might be a more powerful drug than cocaine.

Which brings us back to the moment where I have stopped drinking and doing drugs and realized that underneath that and, perhaps in some part because of that, I am really quite sick. 

I am a born researcher. An information gatherer to the point of obsession. Looked at through the lens of Asperger’s, you might call it a special interest, but I think it’s just an innate curiosity that has served as my guiding force throughout life. I want to know more, I want to dive deeper. There is an invisible beating heart of this universe and I believe in some ways, that if I explore enough, I might get to know the shape of that heart, may feel the edges of the expansion and contraction as it beats the pulse of aliveness.

I cut through the heavy brain fog and anxiety, finally clear of the smog of substances, and went to work researching how to get better. A deep distrust of the western medical complex was instilled in me in my overmedicated youth where not one psychiatrist managed to look at my home life as an influencing factor before prescribing me adult levels of anti-depressants, and so I had ruled out the possibility of seeking treatment from your run of the mill MD. My ill-will towards pharmaceuticals had only compounded in years of working in agriculture and seeing the ties between our food system and our health, so I knew I’d start with food, something I had seen so many of our customers at my butcher shop, Western Daughters, do.

I ate overnight oats and gobs of greens, I eliminated sugar and dairy. I fasted and went keto. I drowned myself in vegetables. There were smoothies, and powders, and potions.  I would try just about anything and everything but the truth was nothing was really working. I’d see initial improvements as I changed things, just to find that the continuation would bring me to deeper and deeper lows. I jumped from one trendy wellness diet to the next and when I hit the end of my rope, I was more bloated and anxious and exhausted than ever. 

At this point, I was listening to every health podcast I could, reading every book about “healthy” diets I could get my hands on. I had heard functional medical doctors speak and decided that I wanted to see one for myself. Bereft of the trendy functional MDs from NY and LA that I was hearing on podcasts, I settled for the less famous midwest version in hope of finally getting some answers. I wanted data - I wanted blood tests and whatever else - to at the very minimum legitimize what I was feeling, if not serve as diagnostic criteria for healing. My first meeting with the nurse at the office went as well as could be expected. I cried as I told her that sometimes I didn’t know if I wanted to live through it anymore, at that point aware that those feelings were happening around my cycle, and told her I just wanted to be well. They ran a battery of blood tests as well as a DUTCH test to look at my hormone levels. 

At this point, I was fairly certain I was suffering from PMDD (Pre-Menstrual Dysphoric Disorder). I knew my hormones were incredibly dysregulated and I suspected that thyroid issues lurked there, too. None of that explained, however, the painful bloating and stomach pain that had followed me from childhood into adulthood. The tests revealed hypothyroidism and deeply dysregulated hormones. My cortisol was out of whack and my progesterone was virtually non-existent, leading to the deep sense of hopelessness I felt as my period neared. They suggested a couple of supplements to help bring my thyroid back into range but didn’t offer much in the way of help when it came to my hormones. They prescribed me Xanax for the anxiety and I realized that, like Western medicine, many functional doctors didn’t have the answers either. They chalked the aches and pains up to an autoimmune disorder - Psoriatic Arthritis, and sent me on my way. 

I knew it was on me to figure it out. I employed my favorite healing modality - research - and went to work. I read every book about female hormones there was and then I started in on PubMed. I read about connections to diet and begin to take a restrictive whole foods approach to eating - favoring a diet heavy in meat with some vegetables and fruit thrown in. I had been sugar-free, dairy-free, but now I went nut-free, seed-oil free, and lower vegetable. I found answers and herbal supplements to support the production of progesterone and the detoxification of estrogen. I continued on a supplement meant to help with hypothyroidism, but I also looked at finding a deeper understanding of how my thyroid worked and what diet and lifestyle levers I could pull to help support it. The bloating lingered and at this point, I suspected that I had SIBO, or small intestinal bacterial overgrowth, and began to adjust my diet accordingly. I tried microdosing LSD and found some relief for my depression, but also an edge to myself that I didn’t like. I didn’t want to just eliminate pain in my body - I wanted to feel some joy. 

It was around this time that my then partner, now husband, and I confided in one another that we were unhappy living in the city and running our butcher shop of 6 years. We shared this over one of the long walks we would take throughout the neighborhood, at the time, one of the few forms of exercise I felt capable of. We made a plan to slowly work our way to the farm - our dream since we first met. 

Around this time, I started working at the butcher shop markedly less. I was so tired and it made me anxious to be around our employees and the customers drained me. I was beginning to realize that diet wasn’t the only piece in my life that I needed to change if I wanted to heal and had started looking at meditation and breath work as pieces that might help my anxiety. It was probably 2018 at this point and these conversations were just getting underway in more mainstream sources. I went back to doing yoga, something I had enjoyed immensely in my early 20’s and found a home there. In the days to come where I could barely leave my house from the anxiety, I would still find my way to my mat almost every day. It helped form a more well-rounded approach to healing, taking me out of my intellectual obsessions over feeling well again and getting me back into my body. I even completed yoga teacher training, thinking I would find just the thing to put me over the edge if I could understand how to teach yoga.

The years went by and things mostly got worse. I got my thyroid back into a better range, and I managed to cure my SIBO without drugs, just a restrictive diet. My hormones were better by this point, though not where I felt they should be. PMDD turned to just terrible PMS, but at least I didn’t find myself on the brink of suicidal ideation once a month. My anxiety and exhaustion, however, ran rampant. I would have enough energy to go to yoga and then I would just collapse on either side of it. I worked less. I did less. But the less I did, the more I listened. I listened to podcast after podcast looking for answers. I dreamed about starting my own podcast, where I could sit in the interviewer seat, but I knew a lifetime of social anxiety would never let me do something as terrifying as talk to people I admire. 

I thought that moving to the farm would fix everything. I had become convinced that it was the city that ailed me. We had realized that there was no way we could afford land in the West and I felt like my dreams were being crushed. My childhood visions of watching the storms roll in over the prairie were getting more and more distant as we realized that land with a house on it in Colorado, Wyoming, Montana, or Idaho was far out of our price range. Zillow revealed, however, that the Northeast was very very affordable. I began to migrate my dreams from one place to the next and settled on the idea of moving to the South or Northeast because of its affordability. In retrospect, there were other routes we could have gone down, but at the time, my illness and a narrow ability to focus led us to solve the problem of getting out of the city however we could. At times, I felt like my life depended on it. 

In February of 2020 we packed up our bags and drove East to move to a farm on the border of New York and Vermont. I was happy to leave my life and what I thought, surely, would be my illnesses behind. Sickness was in the rear view mirror and my future felt ripe with potential. We landed on the farm right before the world would shut down due to Covid. 

At first, I was elated. I was determined to harness this change of scenery and new routine into neuroplasticity to eliminate my anxiety and exhaustion once and for all! THIS was the answer. Finally. Initially, my excitement fueled longer days. As we started stocking the farm with animals, I had mouths to be accountable to. There were hot days of pounding fence posts. I missed my daily hot yoga classes, but I replaced them with a Peloton I rarely had time for. Too busy farming! But underneath the excitement of my dreams come to fruition, something deeper began to take place. Initial excitement wore off and I found a layer and depth to my exhaustion that was profound. I stopped being able to get out of bed. By October of 2020, I was so sick with exhaustion, so riddled with anxiety, so achey, that I rarely was actively doing anything for more than 3 hours a day. I would crawl from the bed to the bath to the couch in a seemingly endless loop of lethargy. There weren’t enough words for tired to describe what I felt. 

Around this time, in my ever-continuing research, I had begun to wonder about Lyme disease. I knew that it was notoriously hard to test for and I wanted to know if that was the cause of all my pain. I had found a novel treatment for Lyme - bee venom therapy - that promised to be the only thing that can eradicate the complex spirochetes that hide in remote corners of the body and, better yet, I had found a healer. I will have to be rather opaque in the following story - because the program that I was a part of is particularly litigious. I was attracted to the program and this healer because it came with exhaustive blood testing. I really wanted a diagnosis. I wanted something to hang my hat on - a sense that I knew what was wrong because I felt if I knew what was wrong, I could research my way out of it. It was the lack of diagnosis that was causing me to suffer, I felt sure of it. 

A battery of blood tests, 34 tubes in all, revealed several things. First, I was the healthiest person in the cohort. Hilarious. But also a testament to the work I had done. My thyroid was in good shape, my inflammation was incredibly low, and nutrients were well in line. But mycoplasma pneumonia, high EBV counts - both symptoms of an underlying Lyme infection - were there. So were markers of declining fertility. And worse, my markers for mold sickness were off the charts. Our charming 150 year old New England home was likely riddled with mold that was making me sick. I continued with the program which promised to tell me how to fix mold, cure Lyme, and solve everything if only I just promised to never talk about health publicly again. 

At this point, I was two years into a certification to become a Board Certified Holistic Nutritionist. I had started school in 2018 as part of my research to cure myself. I was dreaming of starting my own podcast where I talked about health and wellness and starting to take on clients to help ease some of our financial load. I would have to sign a document saying that I wouldn’t do any of that until I was healed in 2-3 years. I panicked. I knew that my illness was keeping me from my dreams but I also knew that I wanted to start that podcast more than anything. In my desperation, I signed it. 

My work with this group would not teach me much that was new in the way of diet. I went on a low-histamine diet to help combat the mold symptoms and found a surprising amount of efficacy, but beyond that, I had read and done it all. We began a journey learning about mold - and would learn that this area of health is perhaps the most ascetic of them all. I was used to giving things up in the name of health - at this point, I was eating a mostly carnivore diet and had given up most foods. This, however, was a whole new level. They wanted us to give up our house and every belonging we had in order to cleanse our lives of mold. I had such little energy and I couldn’t imagine how this was possible. I cried endlessly. Hopelessness set in again. Josh, who was acting as my caretaker at this point, went into action. 

We found scores of black mold behind a shower in the bathroom. We had it remediated. We bagged up our clothes. Switched our mattress. Cleaned the house from top to bottom. But mold testing showed that it wasn’t all gone. We wondered if we should move after only having been on the farm for a year, and while we were excited to entertain the idea of moving back West, we didn’t want to give up. I continued protocols to bind mold from my body, regularly testing my blood. It was during one of these routine 35 vial tests in May of 2021 that I would find markers for Anti-Parietal Cell and Intrinsic Factor Antibodies. 

In retrospect, those antibody tests had been done the previous fall and had been on the edge, but they suddenly tipped over. I would be told it was mold that pushed me over the edge, but in reality, I think they had always lurked there. 

Autoimmunity is broken down into auto, meaning “self”, immunity meaning an inherited or acquired resistance. I had become resistant to myself. Parietal cells are the cells within the stomach that are responsible for releasing hydrogen, part of what makes up the hydrochloric acid that breaks down our food, into the lumen of the stomach. They’re also responsible for producing something called intrinsic factor. Intrinsic Factor is what helps usher B12 into the cells and without it - B12 struggles to find a home. The presence of antiparietal cell antibodies and intrinsic factor antibodies are indicative of a rarely discussed autoimmune disease called Autoimmune Atrophic Gastritis or, as it is better known, Pernicious Anemia. Pernicious anemia is little understood from Western medicine to natural medicine. In all my research, there just isn’t that much information out there, and little exploration beyond its implications for B12. It is marked by a gnawing stomach ache, gastritis, that is somewhat non-descript. The same stomach ache I had carried with me since childhood and likely the same low stomach acid (hypchlorhydria) that had triggered the SIBO infection earlier.

In the rolling waves of illness, I felt like I had finally found an anchor. The implications of Pernicious Anemia as I see them, and there is disagreement about this in the little it is discussed, is that it is an inability to absorb B12 through dietary or supplementary means. Even a B12 supplement has to pass through the stomach to be ushered into the cells - and this autoimmune condition prevents that. At the time of my diagnosis, I was eating ounces of beef liver every day, having naturally gravitated towards it but still - I could not get enough.

I started on a regimen of self-administered  intramuscular B12 injections “loading doses” that would allow my body to be bathed in this crucial vitamin. It did not take long before I was back on my feet. It didn’t happen all at once and it wasn’t a cure all, but the effect was undeniable - I had energy for the first time that I could remember. 

I had also brought my mold markers down but tests on the house showed that mold still lingered. I needed to be mold-free to continue treatment and so I did the only thing I could think to do - I lied. But that lie didn’t even matter. We weren’t going to sell the house. We weren’t going to throw away all of our belongings and come to think of it, now that I had energy, I also wasn’t going to agree to not talk about health. I realized that I didn’t need someone else to heal me, I had everything I needed. I sent a letter to the head of the program, and left. 

I had outsourced my health enough for a lifetime. In childhood, it had been outsourced for me. For the first time in my life, I was beginning to see that there was no single solution, no single guru that could heal me. While diagnoses proved helpful guideposts, they also weren’t the end all be all. I had watched as obsession over a diagnosis had gripped the world. Little plastic tests with two lines used like a sentencing measure for being ostracized from polite society. Covid zero the ultimate goal, the government itself obsessed with finding a one-shot cure. At the same time, ADHD and Autism diagnoses were on the rise. A generation of tik-tokers were finding solace in every diagnosis they could name. My adolescent diagnosis of Asperger’s had been a footnote in my journey - nonchalantly cast aside by my parents and mental health professionals alike. I received a conflicting message as a child, told that I was my depression diagnosis and that I was not my Asperger’s diagnosis. While I felt the opposite, it planted a seed of what it means to fight not to identify with a label that someone has put on you, that probably took root in the punk rock years of my youth. Labels weren’t something to embrace, but something to defy.

Armed with some energy for the first time in my life, I started to make some fast decisions. We were not going to reach mold zero in our home. And we weren’t going to sell it either. So I would just have to live with it. It was settled. I also realized that my dream of the podcast wasn’t going away. Worse yet, I feared that my avoidance of it was also driving some of my symptoms. At this point, I had held this dream in for over 5 years. And dreams do not remain the sparkly beacons of light they begin as when you hold them inside, or at least, this one didn’t. This dream had begun to rot and fester inside me. It would not leave me - I could not let it go, but at this point holding it in was becoming a rotting wound. I had to start. 

In this season of health, I was eating a fairly strict carnivore diet, doing near daily B12 shots, and taking good care of myself. I got out and got morning light in my eyes. I avoided blue light at night. I had a handful of supplements that seemed to be working for me. I knew I was far from being healed - far from even the amount of energy I knew I was capable of having - but I was close enough. 

In the Fall of 2021, I started scheduling interviews. I was terrified. I knew that all these years of research, reading, and listening to podcasts weren’t enough knowledge to be able to dance with the people I wanted to have on the show. I knew fundamentally that I wasn’t enough. A lifetime of debilitating social anxiety had told me that I was other - and I knew as soon as I turned on that microphone, I would be exposing myself. Not just to the guests themselves, these people I looked up to and admired, but to whoever decided to tune in. I hadn’t known how to ask kids to jump rope with them, how would I possibly be able to ask experts that I respected to share a two hour conversation with me? 

But I knew if I didn’t, that rot would become necrotic. I knew that I would eat myself from the inside out if I didn’t at least try. In October of 2021, I sat down with my friend Ed Roberson - the first person that had ever asked to interview me on his podcast Mountain and Prairie, almost three years prior. Ed is a pretty easy guy to get along with, and it set the pace. I felt like I could interview a couple more friends and I did. But the real test came when I considered interviewing strangers….

That’s when everything came to a grinding halt. What on Earth was I doing? I could not do this. I didn’t feel like I knew enough to go toe to toe with these guests. Years ago, when I started on adult doses of anti-depressants as an 8 year old, a doctor had told me that I would be broken forever. “Just look at your parents,” he said, “they’re both on psychiatric medication. There’s no point in fighting it, this is just your fate.” I remember the conversation so clearly, the knowledge that I would never overcome my genetics, my body, my broken brain. I thought back to the hubris I’d had in these last few months to think that I might actually heal - not just my body, but my mind. That I might be anxiety-free enough to talk to people I admired. What a joke. 

And just like that, aches and pains returned for a while. Those nondescript stomach aches seemed to grow worse. I had more energy - but something had shifted. Was it mold? Maybe I couldn’t just make a decision to “get over it” like I had once done with an allergy to horses. Maybe I wasn’t as clever, as researched, as ready for life as I thought. My anxiety returned with a vengeance. I searched for answers. I did more breathwork. I journaled. I tried Ketamine therapy. Maybe that was the panacea I was searching for - maybe entheogens, or psychedelic plants, could unlock the nagging brokenness of my brain. I microdosed mushrooms. I reached and groped in the sudden darkness I’d been plunged into for answers about how to be in the world. No one had taught me how to be in childhood, maybe that was it. 

There comes a point in time where we become so tired of our own bullshit that the only option is to change or wither and die. Maybe this is rock bottom. If it is, I’ve reached it a couple of times in my life. Once, on that fateful day in August when I realized I was destroying everything I loved, when I realized that I only had one precious life. I hit little rock bottoms throughout my illness, but nothing as profound as the one that I would find myself in in February of 2022, when I realized that I had arguably tried everything. I had spent almost 6 years searching. Along the way, I found some answers and more questions. I had followed some gurus, some dogmatic diets, and outsourced my own happiness to professionals. I had found a diagnosis that resonated and B12 shots had, without a doubt, changed my life. And yet, I wasn’t well. 

In March of 2022, spurred on by nothing other than exhaustion with myself, I launched the podcast. 

In my childhood, I learned a lot about how important it is to be perfect. Teased and bullied, I would try to craft a perfect facade and mask to fit in. It would fail over and over, and I would work diligently to refine it. Eventually, when that failed, too, I would seek perfection again in standing out in just the perfect rebellious way to keep everyone at a distance, so I wouldn’t have to fail anymore. I would learn to read my parents' moods with a degree of perfection that would alert me to the slightest shift so that I could adjust who I was to not rock the boat anymore than was necessary as the storm raged. In a business with razor thin margins, I would learn that anything less than perfection would result in financial ruin. And in this body, I would realize that seeming perfection in my diet and lifestyle, would lead me to better health. 

But as it turns out, perfection is just another guru offering a one-shot cure all. It doesn’t exist. The podcast had exposed all the ways in which I wasn’t enough, the spaces where I wasn’t a practiced interviewer, the corners where my knowledge was lacking to adequately accommodate the brilliant guests I dreamed of interviewing. Instead, I would have to put into the world —- me. As I was. Aching belly exposed and running a high risk of failure. For the first time since I was a very young child, I would have to risk showing the world who I really was. All the awkwardness, the love of information and research, the frankness, the desire for depth - all the things that had made me so unpalatable growing up - everything I had been othered for on top of everything I had othered myself for - not being smart enough, articulate enough, good enough - would be out there for anyone with a pair of headphones to hear and see. 

They say the dose makes the poison. And I was about to get just the right dose of the medicine I needed.

One year ago I launched what is now the Mind, Body, and Soil podcast. Inside of this year, I have experienced more leaps and bounds in healing than I thought possible. In that space, I have continued to search for answers that would bring me closer to the potential I know I’m capable of. Some dental issues forced me to explore palate expansion - and I’ve been surprised at how the connection of the tongue to the roof of the mouth is actually quite important. I’ve tinkered with supplements and bloodwork, because in my heart I will always be a curious self-experimenter. I’ve continued to take binders here and there because I do believe that the house is a touch moldy for my delicate constitution. I’ve continued meditation and while I lost exercise for a while, because I was so overwhelmed with the mental work of the podcast, I’ve found it again. I’m still looking, because I think it is in my nature to search. But I’ve stopped believing that there is a cure all or a guru. I’ve also stopped believing in perfection. But in the spaces that those have left and opened up, I’ve started believing in myself.

I am not offering up self-belief or the action of actively going after your dreams as a cure all. If my journey has taught me anything, it is that our health and vitality, our aliveness, are a constellation of ever-changing and evolving factors. I do believe, however, that when we find our own edges of discomfort, we also find the space where we grow and build anew. Our bodies are self-creating, using matter from our food to harness a constant state of changing matter inside of us. We are simultaneously cannibalizing and re-building ourselves in a conversation with our environments that only stops at death. What we build - the directions we grow in - those are up to us.

I only get this one precious life. And I am determined to be healthy so I can live it well.