Raze And Rebuild

I’m currently reading Meghan O’Rourke’s The Invisible Kingdom: Reimagining Chronic Illness. After spending close to a decade occupying that place she so poignantly describes, her account is painful, validating, and cathartic.

She, too, was disbelieved by doctors.

She, too, was told her labs were normal.

She, too, felt the need to cherry-pick all but the worst symptoms to avoid being one of those patients.

She, too, was told it was all in her head.

She, too, had become “someone without an inner life.”

Though I haven’t completed the book yet, the seems to have found enough relief of her symptoms to manage the cognitive load of researching and writing a book. I desperately want to give this brave woman a hug and thank her.

“And so it is a truth universally acknowledged that a young woman in possession of vague symptoms like fatigue and pain will be in search of a doctor who believes she is actually sick.”

Meghan O’Rourke

Her story so closely mimics my own. At one point she states, “It is hard to know what happened when, because for so long I wasn’t sure that I was sick.” That sentence is painfully relatable.

I was bed-bound for over a month beginning Easter day in 2015 with what was later discovered to be bacterial pneumonia and a coccidiomycosis infection in my lungs.

I should have quickly bounced back, but I never did.

I blamed my slow recovery, brain fog, and growing fatigue on aging. I was twenty-five year old, and I fully believed that every mid-twenty-something felt like their body was shutting down.

After a few months, my condition had improved enough that I restarted most activities. I was back at the gym, in yoga classes, at the shooting range. I was back at work sixty hours per week, and socializing with friends every weekend.

My muscles trembled at the gym and the caffeine didn’t keep me from falling asleep at the coffee shop. My brain forgot work assignment and my best friend’s birthday. I had to leave my friend’s bachelor party before sundown because I kept dozing off. I had a hard time coming to terms with growing old.

My boyfriend insisted that what I was experiencing was not normal. Yet, doctor after doctor disagreed. So, I insisted I was fine and carried on, stumbling through life.

By the Fall of 2017, I had convinced myself that I was experiencing fatigue because I was just out-of-shape, despite daily fitness in the forms of weightlifting, yoga, and high- and low-intensity cardio.

So, I joined an 8-week fitness competition, convinced I would come out the other side a new person.

Well, I did. But not in the way I had hoped. By Thanksgiving, I was hardly able to walk, let alone run, lunge, or lift. I was forced to quit personal training, yoga, and my daily walk around the neighborhood. I could barely walk from the bed to the toilet.

By Christmas, I was finally able to crawl out of my denial and admit something was wrong. Yet, every test still suggested that I was fine.

Early-2018 through early-2022 is a blur. Between unknown exposure to mycotoxin fumes and too little oxygen being transported to the brain, the physical structure of my brain and the memories it was meant to capture were compromised. The only memories are those of the most acute pain.

At Mayo, the infectious disease doctor prescribed the tilt table test with the vasodilator, nitroglycerine. I vividly recall thinking it the worst roller coaster ever, where you’re nauseous and woozy with people yelling at you to keep your eyes open, and yelling more when you couldn’t hold back the vomit. It was the worst fifteen minutes of my life.

And a few months later, the cardiopulmonary bike, where I strained my muscles to pedal as I held up cards signaling the height of my pain level. I had to be monitored for an hour afterwards because my heart rate was not dropping to normal levels. Yet, findings were non-significant.

There was that time I drove fifty miles to try a new treatment, only to be turned away because my blood pressure was “dangerously low,” even through I assured the doctor 73/42 was normal for me. Even though I tried to convince her that I always felt lightheaded, but very rarely passed out.

The full-body MRI that showed mysterious tumors throughout my body.

The lumbar puncture when they suspects the fungal lung infection had spread to my brain.

There was so much crying, confusion, and self-blame.

In reading O’Rourke’s account of her experience, I was reminded of some of those experiences I’d so adeptly buried in the backyard of my mind. My heart aches for her.

“This seems like one of the hardest things about being sick in the way you’re sick: being sick makes you stressed. But being stressed makes you sicker.”

Meghan O’Rourke

In 2018, our home flooded. An abundance of mold was discovered and it felt like I’d found my answer. Yet, when I asked whether mold could be causing my respiratory symptoms, I was assured absolutely not. My pulmonologist humored me tested my blood for aspergillus and stachybotrys. When the labs came back negative, I dropped the issue.

By 2019, I was attributing my illness to stress. I had just quit a toxic job and, since traditional medicine hadn’t helped me, I decided to expand my horizons and explore integrative medicine. I found an MD who had also trained in Eastern modalities and took a more holistic approach. My grandparents were worried about me and gave me $5,000 towards treatments. Since nothing was covered by insurance, I had spent it all within six weeks.

With the experience tests, I found some answers. I had leaky gut. I had countless extreme allergies to common foods in my diet. Several symptoms pointed to autoimmune disease. My hormones levels over the course of a day were out-of-whack, and my cortisol levels suggested hypothalamic–pituitary–adrenal axis dysfunction. I left with several hundreds of dollars worth of supplements and compounded prescriptions.

The next step was testing my body for mold. But I had run out of funding, so I never went back.

“The doctor of the future will give no medicine, but will interest his patients in the care of the human frame, in diet, and in the cause and prevention of disease.”

Thomas Edison

In 2021, my boyfriend, who is ever-searching for answers, watched a video lecture series on YouTube from an integrative physician across the country. He wanted to make an appointment, so we saved up $400. Before calling in, I was warned, “He seems to attribute everything to mold, so let’s not let him get sidetracked.”

During the shared appointment, the doctor asked how frequent we urinated, our level of thirst, and whether we experienced static shocks. They were all tiny, annoying symptoms that I had never bothered to mention to a doctor. And each was a finger pointing toward mold.

In July 2021, a NeuroQuant brain MRI, genetic test, and blood labs confirmed the suspicion. My boyfriend and I were both diagnosed with Chronic Inflammatory Response Syndrome (CIRS), due to chronic biotoxin exposure. It had been mold all along.

There are so many blank pages in the story of my life. There are so many forgotten details. Yet, I remember keenly the first time a doctor said that he believed that my symptoms were real. I didn’t need a diagnosis. Just: I believe you. I don’t think that you’re crazy.

At one point, O’Rourke explains the etymology of inflammation. It comes from the Latin verb inflammare–to set on fire. Inflammation in the body manifests as pain, which may mirror the sensation of burning. Yet, as I dig through the rubble in search of meaning, I can’t help but think of the mighty mythical phoenix, which cyclically regenerates. Born of the ashes of his past, he emerges as something new.

As I try to sort through and make sense of what I’ve been through, I can’t help juggling inflammare and phoenix in my mind.

Raze and rebuild.

Raze and rebuild.

My life has been burned to the ground and very little remains. Yet, there is something truly empowering about having nothing left to lose. There is a freedom in being left naked, empty-handed, and alone.

In reading O’Rourke’s account of her illness, I feel this even more acutely. Perhaps complete devastation is merely an inexorable invitation to start anew.