“I honestly can’t believe you’re alive,” one of my doctors told me a few months ago. “It really makes no sense.”
I was sitting with my fiancé in an exam room in the infectious disease wing of Massachusetts General Hospital, as I have countless times over the past four years. I was hearing again how the toxic black mold in my brain defies expectations and baffles my physicians.
I’ve fought this fungal infection with ten brain surgeries, five spinal taps, and two sets of cyborg-like tubes implanted to connect my brain’s ventricles to my abdomen. I’ve had a stroke, and with it serious impairments that have required me to relearn how to walk, talk, and read. None of these procedures has removed the mold in my brain. But I’m still alive.
“It looks like the antifungals have never penetrated the blood–brain barrier, meaning you’ve been fighting this on your own — with just your immune system,” my infectious disease specialist said. “We tested your cerebral spinal fluid after your last surgery and found zero evidence of the drugs.”
Half-elated, half-numb, I listened to her explain how she would switch up my medicine and try something new. This was good news because it meant if the fungus were going to kill me — as it does to up to 70% of its victims — it probably already would have. This was bad news because it meant I spent about three years taking completely ineffective medicine.
The barrier that this medicine must travel through, a semipermeable wall of cells between my blood and my brain, had allowed the fungus through — but now it’s been working in overdrive, keeping out much-needed medicine. I can only hope a new drug will finally punch through and rid me of this chaotic affliction, located at the intersection of two of the most mysterious living things: the fungal kingdom and the human brain.
While the journey to reclaiming normalcy has been fraught, it has taught me how to accept uncertainty. My future remains murky, as soft and dusky grayish-brown as the fungus, Cladophialophora bantiana, itself.
This chaotic affliction, located at the intersection of two of the most mysterious living things: the fungal kingdom and the human brain.
In the winter of 2018, life was good: I was 31 years old, the captain of an 80-foot schooner in Newport, Rhode Island, newly engaged to my partner, Liza, and riding bikes with her as much as I could. To celebrate our engagement, we decided to take a bikepacking trip to Costa Rica. The Nicoya Peninsula, located on the country’s Pacific Coast, is considered one of the most lush places on this planet. Our plan was to bike 20–30 miles a day and spend nine or ten nights sleeping on the beach. We landed on New Year’s Eve and spent the night setting up our tents in the courtyard of a hostel while neighborhood fireworks exploded overhead.
The first few days of the trip were beautiful and the food was amazing — we ate fresh fish over rice and washed it all down with fruit smoothies. We rode almost entirely on National Route 160, a dirt and gravel road along the southern coast of the peninsula that is world-famous for its dust. We wore bandanas around our necks, yanking them up over our mouths every time a car, truck, or motorbike drove by.
On the third day, we encountered a long stretch of beach riding, so I released some air from my tires. Back on the bumpy road afterward, I didn’t bother to pump them back up. When we started going downhill on the loose gravel, my back wheel slid out from under me and I was thrown from my bike, scraping up my arm and elbow pretty badly. Night was falling, so we made camp on a beach and I washed the gravel and dirt out of the wound. I bandaged myself up as best as I could and went to sleep in the tent.
The next morning, we found a walk-in clinic where a nurse named Linet spent the next hour picking detritus out of my elbow. She let us know that accidents like mine happen every day on the Nicoya Peninsula. Thousands of people commute on these roads every day on mopeds, dirt bikes, ATVs, and motorcycles. She removed the tiny pebbles from my arm with precision and expertise and sent us on our way. My elbow healed up nicely with no infection — a tiny detour on an otherwise perfect adventure.
A couple of weeks after returning home to the raw Rhode Island winter, I started noticing strange symptoms. I was having frequent, intense headaches and a palsy started in my facial muscles, making it hard to smile straight. I went to my primary care doctor and he was flummoxed by my symptoms, so he ordered an MRI. He called me back the next day to tell me that there were “some things” we needed to talk about. In his office, the MRI showed two lesions side by side in my head, two little dark circles of doom.
“Cancer?” I asked.
“We don’t know,” he answered gravely.
Meanwhile, the headaches kept coming. I was abusing Advil and taking really hot showers looking for any relief I could. There were various theories as to what my symptoms could represent. Because Liza and I had gone on a similar bike trip in Mexico the year before, it was suggested that I might have cysticercosis, a disease that involves tapeworm larvae from undercooked pork getting into the brain. After that was debunked, I was tested for Lyme, tuberculosis, HIV, and various forms of brain cancer. That spring I underwent two brain biopsies, but the surgeons couldn’t find anything conclusive.
Halfway through that summer, I left my job as a ship captain because I was in so much pain that I couldn’t work in a setting that required me to be responsible for other people’s lives. Instead, I secured work with a nonprofit. It’s so much easier to hide mysterious pains when you’re sitting behind a desk than it is when you’re front and center, trying to navigate a large sailing ship through a busy port. I probably shouldn’t have been working at all, but I was more or less convinced that these pains were mysterious but temporary. They would go away.
The job provided financial stability, but I was consumed with fear and uncertainty. What was wrong with me? While I waited for the pain to go away, I began to take comfort in the readings of Buddhist teachers like Pema Chödrön, who once wrote, “when we resist change, it’s called suffering. But when we can completely let go and not struggle against it, that’s called enlightenment.”
My life had changed drastically in less than a year. My sailing career had abruptly ended. I didn’t know if I would ever be able to travel abroad again. Whereas before I was a strong and confident bike rider, now I was frequently falling over for no reason at all. It seemed I had lost my balance along with everything else.
Eight months after my first symptoms, I went to Mass General for a third brain biopsy, and my neurosurgeon finally struck paydirt. She called Liza from the OR and said she could literally see a dark fungus with her naked eye — a far cry from the cancer she had been determined to find.
Samples were sent off to a lab in Texas and it was confirmed that I had an extremely rare tropical fungus called Cladophialophora bantiana, also called “black mold” because melanin gives it a dark coloration. It is known to cause brain abscesses in humans but is so rare that only about 120 cases have been confirmed worldwide since its discovery in 1911, with about half of them in India. Many case reports describe how the long and difficult diagnosis process causes poor outcomes (read: death). Of the total cases, around half were found in patients who were immunocompromised — some had organ transplants, one had HIV — and half in people with perfectly healthy immune systems like mine. Because Costa Rica is a tropical country and because of our constant inhalation of dust and the injury after my accident, doctors and I were all but certain that this was the provenance.
I’ve learned what it’s like to be on the forefront of scientific research. It’s a lonely perch.
According to the scientific literature, “Long-term survival from cerebral black mold abscesses has been reported only when complete surgical resection was possible.” Neurosurgeons ruled out excision in my case because the fungus was located too close to vital brain areas, so my team of doctors instead prescribed a combination of oral antifungal medication to attack the mold and a steroid to control the immense swelling and buildup of fluid in the brain it causes.
The blood–brain barrier that the fungus passed through typically protects the brain from circulating pathogens in the body. As a result, it’s not often that we see bloodborne infections take hold inside the brain. In addition to the barrier, our brains bathe themself in a substance called cerebrospinal fluid (CSF) that’s produced naturally. For most people, excess CSF — a colorless liquid produced in all of the ventricles of the brain — is reabsorbed by the body. But in my case, this doesn’t happen very effectively because of the fungus and the scar tissue, so the CSF collects, causing headaches, fatigue, fever, and other neurological symptoms.
Because the infection is so rare and case reports so few, there isn’t much data or a “playbook” that my doctors can refer to for treating me. To get a handle on the uncertainty of my diagnosis, I spent a lot of time reading as much as I could about black mold. It’s as if I were looking for a scientist to tell me why this was happening to me. I should be out exploring the world, not laid up in a hospital trying to tease out which machines were making what sounds. I got so addicted to reading the scant information about my disease that was out there that my fiancé, Liza, eventually begged me to stop, saying it was doing more harm than good — that the answers to my questions just couldn’t be found.
A definitive diagnosis was something to hold on to, the first thing the doctors knew with certainty after months of confusion. But it also prompted questions that no one could answer. How did I get a fungus in my brain? Was it from breathing dust on Route 160 or from dirt in the wound in my arm, or did it slip in through some intrusion I wasn't aware of? Can I ever get it out? How will this story end?
From the very beginning, my doctors placed me on a commonly prescribed steroid to control the headaches and pressure: dexamethasone. Steroids are amazing at controlling the inflammatory symptoms I was experiencing, but at the same time, their long-term use comes with a host of negative impacts like bone density loss, mood swings, adrenal insufficiency, and immunosuppression. My doctors called it a “sledgehammer” of a treatment and tried everything they could to wean me off these drugs. Each time, after a couple of weeks of steroid tapering, I would end up back in the hospital, desperately ill.
The immunosuppression really scared me at the start of the pandemic. How would I possibly survive a bout with COVID if my immune system wasn’t working like it was supposed to? How long had I been on these medications for? My faith in modern medicine was at an all-time low. As a result of my fear of COVID, I decided to stop taking steroids without consulting anyone, thinking that I could continue my rehabilitation without them. I equate this decision with one that someone stuck in a burning building might make: either jump to the street below or be consumed by the flames. They’re both pretty terrible choices, but I was tired of living in and out of medical care. To take my life into my own hands gave me a sense of radical agency: Why hadn’t I done this sooner? I honestly believed that this was going to work.
In late March 2020, I had a stroke. The day started off like all the other ones do in my new reality: My head felt like it was splitting open. A cacophony of pain accompanied my every movement.
Strava tells me that I somehow went running that morning. But then things got worse. The pressure inside my head was intense. I couldn’t eat. My vision was going black. Obviously, I should have realized that this was bad, but I kept telling myself that these sensations were temporary. I was so weak by the afternoon that I couldn’t get up the stairs to my apartment. I didn’t know at the time, but I was having the first of a series of mini strokes.
Liza called 911 to take me to Rhode Island Hospital. Later, I would get transferred to Mass General, and then Spaulding Rehab in Charlestown, Massachusetts. All of these institutions were under strict COVID-19 precautions. I was kept in solitary confinement for over a month while experiencing severe visual, vocal, and cognitive impairments.
As a result of the strokes, my eyesight was heavily affected by double vision and a reduction in my visual field, my handwriting was reduced to that of a toddler’s, and my speech rendered thick and gravelly. The doctors told me later that the pressure inside my skull was 15 times the amount of pressure that the brain normally experiences. They told Liza that if I survived, I’d be completely blind, but when she got a text from me a few days later, she was filled with promise.
So rare that only about 120 cases have been confirmed worldwide since its discovery in 1911.
It has been just short of four years now living with this infection, and while I don’t have any expectations to be “cured” anytime soon, I do expect to live for a long time.
I’m hopeful that the new drugs will work now that my doctors figured out that the previous drugs never even got into my brain. Maybe my vision, voice, and fine motor skills will eventually return.
In order for me to get on a bike again, Liza and I bought a tandem. We rode together frequently until I was able to get surgery to correct my double vision. Even though we’ll never know the real reason I got this fungus, I hate thinking that this whole chapter of my life was because I didn’t have enough air pressure in my bicycle tires. It has to mean more.
Perhaps even my short-term memory might come back. People commonly joke that they can’t remember what happened five minutes ago, and I’m here to say that is real for me: since my stroke, I can’t remember anything unless I write it down. In the hospital, doctors would frequently ask me what year it was and I would answer “2017” very seriously. Why 2017? It was pre-fungus, I guess. Life was pretty good.
There is no cure for all the time that this random neurotropic fungus has cost me while trying to keep it under control. I have lost my early 30s waiting in the hospital for test results to come back and procedures to happen. My family and friends have spent these years keeping me emotionally, medically, logistically, and financially afloat. While this infection has been difficult for me, I realize it has been difficult in its own ways for them. No one wants to see their loved ones in pain.
People have pointed out that I should create a support network for folks who suffer from fungal infections like mine but the sad truth is that if I did, I would be the only member. Every now and then, I reach out to someone I find on the internet with my affliction but they never respond. I would love to say that over the course of this illness I’ve met many wonderful people who serve as an inspiration to keep plodding along, but the sad truth is that everyone I’ve come across with my condition is now deceased. I would be remiss if I didn’t say that this experience has taught me to appreciate the times I’m not stuck in the hospital with a billion tubes poking out in every direction. If anything, I’ve learned what it’s like to be on the forefront of scientific research. It’s a lonely perch.
Because attending graduate school was something I wanted to accomplish before it was too late, I left my job and decided to enroll at the University of Rhode Island for my master’s in marine affairs last September. It had been over a decade since I had completed my undergraduate degree there, and I reasoned that it would make sense for me to pursue this opportunity while I waited for my medical condition to become more stable.
I finished my first year with a 3.7 GPA and am currently writing my thesis about offshore wind. Working on this project has been a godsend: Instead of watching terrible movies on the hospital TV, it’s so much more gratifying to work on a project that might have real-world implications. It’s funny how my brain has changed: I used to navigate across oceans by reading the stars, and now I have trouble finding the bathroom in my own home. I can write a 20-page paper without blinking an eye, but I have trouble navigating down the street.
I often think back to the words of the Buddhist monks I read early on who try to teach us that nothing is fixed and that life is always in flux. I can’t escape the uncertainty around my future, but no one can. I just have to learn to live with it. Like my doctor said, none of this makes any sense, but it also doesn’t have to. ●