I entered ‘the mysterious illness club’ in the spring of 2016, nine months before Donald Trump became our next president. You might be wondering what this has to do with the archeology of a mysterious illness. I’ll spare you my political commentary; suffice it to say that the stress of the 2016 election (and its aftermath) contributed significantly to my ‘perfect storm.’
It was many, many months before I fully understood the impact of nervous system trauma. That sometimes a cascade of seemingly unrelated events — physical, psychological, emotional, bacterial or fungal — can trigger a health crisis so deep, even the best and brightest practitioners struggle to diagnose your condition or effectively treat it.
I think it’s important to note here that until recently I had been blessed with remarkable health. I eat well and exercise regularly. I honor the rhythms of my body. I even created a second half of life career around body wisdom, nourishment and expression through art. So I find it somewhat ironic that with all that I do to nurture this ‘one precious life,’ I am one day taken down by an environmental illness, a mold exposure that leaves me wondering if I will ever breathe freely again.
Where do I begin?
I could tell you about the time I drove to Pennsylvania to deliver a SoulCollage® workshop. We were sitting in a cheery kitchen waiting for our guests to arrive. Haidee, my lovely hostess, pulled out a bottle of kitchen cleaner and started wiping down the counter, chattering away as she cleaned. Her voice became a drone of words as alarm bells sounded in my head (which instantly started pounding). The lemony fresh scent felt like poison entering my already traumatized nasal cavity. I smiled through my distress because I didn’t want to offend Haidee. But truthfully? I thought I was going just a little bit crazy.
I could tell you about the Christmas Eve celebration my husband planned for weeks. A country inn. Twinkly lights adorning magnificent pillars on a wraparound porch. A stone rabbit planter teasing a tabby cat that followed us around the grounds, body vibrating with an endless purr. We entered our room. Anticipating a lovely getaway weekend complete with working fireplace and decanter of port, we were instead assaulted by a floral scent so strong we had to open every window and bundle up in layers of wool. As we sipped our wine, we tried to pretend there was nothing unusual about sitting in front of a blazing fire with the windows ajar. Then, convinced there was an air freshener hiding in one of the outlets or perhaps some really smelly bath salts, we searched for the culprit. Everywhere. We had become quite adept at scoping out scents, but our search turned up nothing. We made our way to the dining room anticipating a fabulous meal.
Dinner did not disappoint. A spectacular display beginning with a sumptuous sequence of not one, but three separate amuse-bouches: creamy portabella soup, thinly sliced cucumber cradling slivers of salmon nestled in a dollop of crème fraiche, a tender little morsel of pork belly in a balsamic reduction. A dinner so carefully crafted we wanted to savor it for hours, which we did. Anything to avoid going back to our room, where we soon discovered the source of the odor. Dryer sheets. The bedding reeked. Crawling into bed, I wondered how long I could hold my breath pretending I was just fine. When my husband’s snores signaled it was safe, I pulled a blanket from the armoire and curled up in a chair by an open window.
I could tell you about the elimination diets, about thinking perhaps I had developed a wicked food sensitivity, and how I gave up my beloved chocolate for a full year because, well, it’s a bean and all beans were on the ‘do not eat’ list along with lentils, nuts, seeds, eggs, tomatoes, peppers, peas, eggplant, corn, soy, flax, gluten, grains, coffee, tea, sugar, spices and alcohol. Did I mention the cherry tomato plants in my garden were laden with the most beautiful plump, juicy red tomatoes? How I live for my garden? And how every few days I slow-roasted a huge batch of those tomatoes knowing that I could at least bask in their aroma and then freeze them hoping one day I could return them to my food repertoire because this was an experiment and everyone knows elimination diets are temporary. And therapeutic.
But this didn’t feel temporary and it certainly didn’t feel therapeutic. It felt more like a full out assault on my foodie sensibility and that of my craft … culinary nutrition.
Ten pounds lighter, twenty practitioners later, and with my approved food list diminishing each day, I decided to take my food life back into my own very capable hands. At the deepest level I knew this mysterious illness was not about the food. I also feared I would fall into an abyss of depression if I had to stop eating all the gorgeous meals I loved to prepare.
I could tell you about the day I sneezed and sneezed again, which wouldn’t be noteworthy except that my respiratory system had become so impaired I couldn’t remember the last time I’d sneezed. Nor could I remember the last time I blew my nose. Only when I cried did the sinuses find their flow. Only when I cried.
I could tell you about the time I happened upon a blog written by a young woman who was chronicling her biotoxin illness. A photo showed her standing in front of a window in her new apartment which was completely devoid of furniture because at that point she was reacting to almost everything. I had never given much thought to outgassing or paint molecules or mold spores and I said to myself, I do not want to blog about my biotoxin journey. At all. I’ll just wait until it passes so that I can resume my weekly blog chronicling delicious.
It didn’t pass.
One year later I started wondering what else I could write about because surely people wouldn’t want to follow a holistic health coach who lost her health to a mysterious mélange of misery.
I could tell you about mold remediation and air purifiers and follow up tests, about how convinced I was that deadly spores still lingered in the air assaulting my nose with every breath. And how they all came back negative and crazy crossed my mind. Again.
I could tell you about the tests. First there was the allergist who placed over forty needles in my back finding the usual suspects — dust mites, certain grasses, mold. Each doctor I visited wrote a new script for blood work. I found myself on a first name basis with the technicians at LabQuest, “Hello Sue Ann, how many vials are we going to fill today?” Or that even the best insurance companies pay only a percentage of your blood work when the visits are no longer routine.
I could tell you about the spreadsheets. Pages and pages of practitioners and protocols —blood work, tinctures, tonics, herbs, supplements, detox methods, acupuncture appointments, massage therapy, cupping procedures, mercury removal, ozone treatments, allergy elimination therapy, chelation — meticulously tracked because unless I was doing something proactive, I feared I would lose myself in a deluge of despair.
And, I am a tenacious tracker.
One afternoon I purchased a brand-new binder and a box of plastic sleeves. Into each sleeve I snuggled a gorgeous recipe torn from one of my favorite food magazines, then used it to partition my health journey. That entertained me for weeks. I wasn’t getting any better but I was, indeed, making the process of trying more artistic.
I could tell you about the day I noticed my weekly grocery bill had tripled because, in addition to the animal protein I was now adding to my largely plant-based diet, I was adding $90 supplements. Without glancing at the price. Pycnogenol from French maritime pine bark? Sure, I’ll try that. I love France. One day I sent an email to the author of Herbal Antibiotics. By then I was pretty much convinced that I was not going to add pharmaceuticals to the mix since much of my research had revealed prolonged use of these drugs could lead to debilitating consequences for otherwise healthy organs (like the beloved liver) with little evidence of long term relief. The author, who I learned was no longer taking clients, recommended a few herbalists. I contacted one of them. She sent me a list of herbs and supplements which I gladly added to the growing cache covering my desk. Did I mention this practitioner knew only a fraction of my health history but by that time I was so desperate for some relief I didn’t even consider the irony?
Pycnogenol from French maritime pine bark? Sure, I’ll try that. I love France.
I could tell you that less than a week before leaving for the UK to engage in what I am hoping will be the end of my seemingly endless search for recovery, I received a phone call from yet another practitioner, a kinesthesiologist, who had a wait-listed slot available. I took it. All I remember from that appointment, aside from the $600 invoice, is that we reviewed my blood work line by line, and even though most of my scores were only a few points away from optimal, I found myself nodding, yes, yes, yes, sick, sick, sick.
A whole new round of supplements arrived a few days later, just in time for my trip.