When I walked into the neurologist’s office in 2013 with C., it should have been apparent that something was very wrong with me. I struggled to keep open my eyes, not because of exhaustion but because of the weakness of my muscles. If you lifted my arm, it would immediately flop back down again as though boneless. My body frequently broke out into inexplicable sweats and chills. On top of all that, I had been experiencing delusions for approximately ten months that year. My psychiatrist suspected anti-NMDA receptor encephalitis, made famous by Susannah Cahalan’s memoir, Brain on Fire: My Month of Madness, but that did not explain everything that was wrong with me, including the peripheral neuropathy that attacked my hands and feet, my “idiopathic fainting,” or the extreme weight loss that caused suspicions of cancer—and so I was referred to this neurologist, who was described by my psychiatrist as “smart” and “good in her field.”
“I don’t think you have anti-NMDA receptor encephalitis, based on your chart,” she said brusquely while C. and I sat in matching chairs that faced her examination table. “I’m doing this as a favor to your psychiatrist.” And then she added, “Someday, we’ll be able to trace all mental illnesses to autoimmune disorders. But we’re not there yet.”
In Santa Fe, New Mexico, where I had never been prior to 2017, my friend and fellow writer Porochista insisted that we visit the pilgrimage site of Chimayó. “You’ll be able to write something amazing about it,” she said. We were in the IV room of an integrative health care clinic when she said this, facing each other in enormous leather chairs with oxygen tubes in our noses and IV needles taped to our arms.
I did not feel like going anywhere. In that IV room I underwent several multinutrient drips and a few sessions of ozonated saline of differing concentrations, one of which made me so sick that I was moved to an expensive BioMat and handed two paper cups: one of tulsi rose tea and one containing a chunk of dark chocolate. Porochista and I were in Santa Fe for a nine-day round of medical treatments, and the combination of baseline chronic illness and intensive doctors’ appointments, plus semiregular meals at restaurants, was nearly more than I could endure. To do anything more taxing than lying in bed brought on fevers and chills, nausea, dizziness, and difficulty breathing. This constellation of symptoms was, in Santa Fe, diagnosed as the result of dysautonomia, or, more specifically, postural orthostatic tachycardia syndrome (POTS). Porochista had been diagnosed with dysautonomia the previous winter, after she was sideswiped by an 18-wheeler; dysautonomia is also recognized as a complication of chronic, or late-stage, Lyme disease, the controversial primary diagnosis the two of us share.
“We can stay in the car,” Porochista said about Chimayó. “Let’s go and look around. We can see how we feel,” she said, which was a common refrain during that trip, and is a common attitude among the chronically ill.
The neurologist I saw in 2013 ordered tests. I had an MRI and an EEG. Someone in a basement laboratory drew fifteen vials of blood, and after this succession of tests C. and I waited for the results, which could, depending, hurtle me toward an intimate knowledge of mortality, gift us with new diagnoses and possible treatments, or tell us nothing. By the end of it all, the most interesting finding from those blood-filled vials was the presence of antibodies for the calcium channel Ab P/Q type, which pointed to myasthenia gravis, Lambert-Eaton myasthenic syndrome, or cancer; however, both the MRI and EEG came back clean, which ultimately meant that the neurologist had no diagnosis for me. I continued to be aimlessly, miserably sick until I was diagnosed with chronic Lyme disease by a new doctor, through an IGeneX test in 2015.
Once I was diagnosed, the new doctor—known in the Lyme community as an LLMD, or a “Lyme-literate medical doctor”—told me that my diagnosis of schizoaffective disorder was likely related to an infection by Borrelia burgdorferi bacteria, and called my illness neuroborreliosis, which implies an infection affecting the brain and central nervous system. This would not be a diagnosis handed down by a doctor outside of the Lyme community, but I was willing to believe it. Until then, I had thought of my psychiatric illness not only as one of my primary identifiers, but as a beast all its own with an accompanying origin story. The narrative of bacteria infecting my brain suddenly turned my schizoaffective disorder into something organic—a problem amid a constellation of other problems, to be considered alongside my growing litany of symptoms.
A chronic Lyme diagnosis is a kind of belief system. I never experienced a tick bite that I was aware of; I’d had no classic bull’s-eye rash. The Centers for Disease Control, which provides the framework from which conventional doctors across the country form their diagnoses, acknowledges that Lyme disease exists—in the 1970s, the citizens of Lyme, Connecticut, noticed a plague of medical symptoms, which were later pinpointed by Dr. Wilhelm Burgdorfer as originating from a tick-borne spirochete—but claims that “because of the confusion in how the term [chronic Lyme disease] in this field is employed, experts do not support its use.” In other words: because Lyme disease may or may not be the answer for people who exhibit the symptoms of Lyme disease, and because “in many occasions it has been used to describe symptoms in people who have no evidence of a current or past infection with B. burgdorferi,” the CDC errs on the side of dictating that chronic Lyme disease is not a valid diagnosis.
Because the CDC does not officially support a chronic Lyme diagnosis, the world of those who diagnose and treat chronic Lyme and those who are affected by the disease exists outside the parameters of conventional medicine. This world has a language, set of ideas, and arsenal of treatments all its own. Many LLMDs belong to the International Lyme and Associated Diseases Society (ILADS), which, according to its mission statement, is dedicated to “the appropriate diagnosis and treatment of Lyme and associated diseases” (italics mine). A cornerstone belief of ILADS and the chronic Lyme community is that the ELISA (enzyme-linked immunosorbent assay) screening test, which the CDC mandates as a necessary component of a true Lyme diagnosis, is unreliable and misses 35 percent of culture-proven Lyme disease. LLMDs instead use as their gold-standard a test from the aforementioned IGeneX, described as a “[Clinical Laboratory Improvement Amendments]–certified high complexity testing lab with expertise in testing for tick-borne diseases.” Another ILADS cornerstone is that Lyme is “the great imitator,” and is therefore often misdiagnosed as illnesses ranging from chronic fatigue syndrome (also known as myalgic encephalomyelitis) to amyotrophic lateral sclerosis.
To accept a chronic Lyme diagnosis is to adopt, at least partially, these beliefs. If you have the resources (financial, communal, cognitive, emotional, et cetera), you will seek out an LLMD and the treatments recommended by that LLMD, which means sinking a fortune into health care. I have yet to meet a chronic Lyme patient whose health insurance, if they are fortunate enough to have it, will cover their treatment for chronic Lyme—a lesson I learned only after gambling on coverage through my state’s health exchange and being turned down time and again for reimbursement. Porochista told me that she has spent over $140,000 on treatment. A search for “Lyme” on GoFundMe turns up 51,366 results, including “Sarah’s Battle with Lyme and Fibro,” “Save Kaeley from Lyme Disease,” “Help Aaron & Nicole Beat Lyme,” and “Lessons in Lyme: Help Caden Smile!” The amounts being raised range from the thousands to the six figures for treatments that the CDC does not acknowledge or condone. To the CDC, these people are unfortunate, but they have no known recourse; they have fallen through the cracks.
I am someone who finds comfort in science and authority. After all, I used to work in a research laboratory, and while working at a fashion and culture magazine, I was derisively called “conservative” by the editor in chief during a botched pitch session. But to be so ill that I couldn’t hold down a full-time job, and to simultaneously be without a diagnosis, treatment, or hope, made me receptive to the decree of chronic Lyme when my IGeneX test came back positive. Sick people, as it turns out, generally stray into alternative medicine not because they relish the idea of indulging in what others call quackery, but because traditional Western medicine has failed them.
For example, in discussing with writer Blair Braverman—a friend who has also been diagnosed with Lyme—an alternative, herb-based Lyme treatment known as the Buhner protocol, I learned that Stephen Buhner compares chronic Lyme to Morgellons. Morgellons is the creepy-crawly disease Leslie Jamison writes about in her award-winning Harper’s Magazine essay “The Devil’s Bait.” Jamison is far from unkind in describing the people who believe themselves to be afflicted with Morgellons—a condition that allegedly causes crawling sensations beneath the skin and the emergence of colorful fibers from the pores—but the essay does make plain Jamison’s belief that Morgellons is an illness of delusion. “They experiment with different cures and compare notes: freezing, insecticides, dewormers for cattle, horses, dogs,” she writes. It’s no wonder Braverman and I balk at the thought of being associated with such a thing. Then she sends me photographs of three pages from one of Buhner’s books. According to Buhner, Marianne Middelveen, a microbiologist and medical mycologist, believes that the symptoms of a disease in cattle called digital dermatitis closely parallel those of Morgellons, right down to the lesions and “abnormal filament formation.” Bacteria at the lesion sites are mostly spirochetes, just as are the Lyme Borrelia burgdorferi bacteria. But regardless of whether Morgellons is “real” or whether it originates from bacteria as Lyme disease does, I can no longer put myself at a comfortable distance from “those people” who self-diagnose with Morgellons. We are, in the end, linked by desperation based in suffering, and based on a system of conventional medicine that not only has no method of alleviating that suffering, but also accuses us of psychosomatic pathology.
When my LLMD, a man I’d been referred to by another doctor—to whom I’d been referred by a Reiki practitioner/masseuse—said, “You definitely have chronic Lyme,” I was ready to believe him. Perhaps it’s more accurate to say that I was ready to try to believe him.
For a year, back when my hallucinations and delusions were fairly new, I considered becoming Catholic. This consideration was unrelated to the psychosis; I was engaged to be wed to a Catholic, and I faced the question of conversion, which is mandatory for a Catholic ceremony if both parties are not already part of the Church. Our friend’s wife, for example, had converted for our friend. At a bar in New Orleans I peppered her with questions about how she’d known it was the right thing to do. I should have realized before asking that I would be dissatisfied no matter her answer; there is no answer to that esoteric question that would help a questioning soul.
Still, I did what I had done all my life when faced with something I did not understand: I read about it. I read Thomas Merton and C. S. Lewis and The Jesuit Guide to (Almost) Everything: A Spirituality for Real Life and the Holy Bible and guides to the Jesuit Examen and Augustine’s Confessions and Julian of Norwich’s Revelations of Divine Love. I went to Mass at the Catholic church down the street, where I stood and sat at the appropriate times, sang along to “Gloria,” and exchanged the sign of peace with my neighbors, though I never gathered the courage to approach the sanctuary for blessing while others, including C., took Communion. He and I had long conversations about God and faith—I was full of questions, and he answered as best as he could, sometimes pulling the New Testament off the shelf for answers.
Catholicism appealed to me, and still does. The aesthetics of Catholicism, which are rooted in mysticism and ritual, and which often include Latin and incense and pillar candles, thrummed a chord within my heart. I respected the intellectualism of the Jesuit tradition. And yet I would go to Mass, and I would hear the people around me recite by heart, in unison, the profession of faith, which began—
We believe in one God, the Father, the Almighty, maker of heaven and earth, of all that is seen and unseen. We believe in one Lord, Jesus Christ, the only Son of God, eternally begotten of the Father, God from God, Light from Light, true God from true God, begotten, not made, one in Being with the Father …
—and I would wonder whether I could ever pronounce such things aloud, while boldly believing every word that passed my lips. I am certain that there are some people who convert without necessarily believing the entire profession, but I knew that I could not do such a thing, as it were, in good faith. In the end, I did not.
Chimayó is a town with a population of 31,700, and the El Santuario de Chimayó, which would be our destination, is a pilgrimage site where people pray for miracles, specifically miracles of healing. Built on the site of a miracle, El Santuario contains el pocito, a small pit filled with holy dirt described as having curative powers. A section of El Santuario’s website, titled Testimonials, includes this: “I told her I’d FedEx her some holy dirt so it would get there in time…. The night before Ruby’s scheduled surgery, Tony and Steve took the dirt and rubbed it on Ruby’s body and prayed…. To their surprise the doctor came to them in the waiting room and said Ruby didn’t need the surgery after all!” And this: “I will admit I was kind of scared at first, but my aunt and mother convinced me to not worry and to not be afraid…. I followed the steps and rubbed the dirt on the area of my legs where the pain was…. The next morning I woke up and felt little to no pain at all in my legs.”
Illness draws me to places such as this. The prior winter, while visiting my in-laws in New Orleans, I had gone to St. Roch Chapel, which was built after Reverend Peter Thevis prayed to Saint Roch for his parishioners to be spared from yellow fever. The illness had been raging throughout the area, and Reverend Thevis found that his community was, in fact, miraculously saved. St. Roch Chapel has since become a place where those hoping for miraculous cures not only pray for intercession, but also leave behind symbols of their ailments as offerings once they’ve been cured.
The chapel was far smaller than I’d anticipated—smaller than any church I’d seen, smaller than a school cafeteria. There were no visitors or tourists save for C., his sister, her boyfriend, and myself. A statue of Saint Roch beckoned, colored in pastels. In a wide-brimmed hat, with a mustache and goatee, he looked a bit like a suave conquistador. Off to the side, in a closed-off, gated room about three feet by three feet in size, hung artificial limbs and crutches, as well as homemade plaques and miniatures of dogs, hearts, and crosses. These items serve as both decor and symbol; a glass eye is a glass eye, small and coated in dust like an outsize marble, but it suggests sight regained, suffering, and hope for anyone who notices it.
Hung on my bedroom wall is a quote attributed to Joan of Arc: “I am not afraid. I was born to do this.” However my life unfolds, goes my thinking, is how I am meant to live it; however my life un-spools itself, I was created to bear it.
To the chapel I had taken a beloved stone striated by white lines. According to what I’d read, I was supposed to leave something only once I’d been healed—but my intuition told me to leave something then, and so I knelt and tossed the stone through the bars. I said a clumsy prayer while the sun sluiced through the windows into the tiny room. It is probably still there.
The belief that DSM-caliber mental illness might be linked to bodily illness, and particularly to autoimmune illness, as my neurologist proposed, is gaining traction. In the Atlantic article “When the Body Attacks the Mind,” journalist Moises Velasquez-Manoff, author of An Epidemic of Absence: A New Way of Understanding Allergies and Autoimmune Diseases, describes the nightmare experienced by the Egger family when thirteen-year-old Sasha suddenly began to exhibit severe psychotic symptoms. One specialist diagnosed Sasha as having bipolar disorder, subsequently prescribing antipsychotics; Sasha’s mother, who was a pediatric psychiatrist and understood the unlikelihood of a sudden onset of mental illness, persisted until she found a neurologist who suspected something else: an autoimmune variant of encephalitis. Upon infusion with antibodies used to treat autoimmune attacks, Sasha “improved almost immediately.” “If an autoimmune disorder of the brain could so closely resemble psychiatric illnesses,” Velasquez-Manoff asks, “then what, really, were these illnesses?”
According to the growing field of autoimmune neurology, the immune system can wage a misguided attack on a person’s central or peripheral nervous system. My previously suspected diagnosis of anti-NMDA receptor encephalitis is one such example—the disorder occurs when the immune system attacks the brain’s NMDA receptors, resulting in a chaotic array of symptoms such as speech dysfunction, hallucinations, delusions, and cognitive and behavioral disturbances—symptoms, in other words, that look like schizophrenia. In a 2006 study by William W. Eaton et al., which links three existing Danish data sets, the researchers concluded that “a history of any autoimmune disease was associated with a 45% increase in risk for schizophrenia.”
Lyme disease might have escalated my existing psychiatric condition by triggering an immune reaction. Or, as my LLMD believes, Lyme might have directly infected my brain, causing the symptoms that led to a diagnosis of schizoaffective disorder. Perhaps I don’t have chronic Lyme disease at all, but something else that may or may not be recognized by the CDC. For years, Dr. M implied that my disabling illness was the consequence of complex post-traumatic stress disorder, which I interpreted as a formal way of saying that it was all in my head, a form of hysteria. Most recently, she has tried to coax me into psychoanalysis, promising that she knows practitioners who have greatly helped their clients. Isn’t it suspect, she asks, that I become exhausted after engaging in strenuous career-based activity? She supposes that this exhaustion is a type of punishing self-sabotage for any lick of success. These days, I tell people I have both chronic Lyme and schizoaffective disorder, and as far as I know, they believe me.
Porochista and I went to Chimayó on a Tuesday after IV treatment. An old friend of hers named Amy drove us, and they chatted as old friends do about the past and present while I sat in the backseat, watching the desert scroll by and worrying about how well my body would hold up—a worry that is daily and incessant in the face of whatever life demands of me.
This worry became inflamed when Amy parked the car and apologized for how far we would have to walk. Porochista, who used a cane as needed and had one with her throughout the trip, assured her that it would be fine, and I murmured assent, not wanting to voice apprehension to a woman who had played hooky from work to bring us to this holy place. We walked from the car to a path leading toward a collection of small buildings that made up El Santuario; on either side of the path were wire fences adorned with rosaries and crosses, bound and tied with twine or yarn to their links. The crosses were wooden, and often had names written on them, or messages such as PRAY FOR US MARY. Although it had been frigid for much of our time in Santa Fe, it was sunny when we arrived at Chimayó. I left my faux-fur pullover in the car, gambling that I wouldn’t need it again—there was, after all, little chance I’d turn around and walk back to the car for it at any point.
In one long row of wooden stalls, people had affixed photographs of loved ones to the walls. A sign instructed that visitors pray for those whose images you saw there: people of all ages, genders, and ethnicities, including those who appeared hale and hearty, and those who were pictured in hospital beds with thin, pastel sheets pulled up to their bony chests. This collage reminded me of walking through Grand Central Terminal immediately after 9/11, when plaintive MISSING flyers were everywhere—overwhelming, futile sheets of paper emblazoned with the faces of the lost. And there were lost people here, too—photographs of soldiers who were POWs and MIA.
I snapped pictures with my camera. I took some on my phone. The wallpaper on my lock screen was of a Joan of Arc statue with the word “Hope” in gold across it. I saw El Santuario as being built on hope, which is not the same thing as faith. Hope is a cast line in search of fish; faith is the belief that you won’t starve to death, or that if you do, God’s plan could account for the tragedy. My morning prayers begin with, “Blessed Mystery, thank you for … and Blessed Mystery, may I …” Remission appears over and over in the latter: May I be well.
We walked among the little altars, leaves crunching underfoot. Devotional candles, silk flowers, rosaries, and scribbled petitions were huddled around statues of Our Lady of Guadalupe and Our Lady of La Vang and a mosaic of Saint Francis. Carved above one statue were the words HAIL MARY FULL OF GRACE, THE LORD IS WITH THEE and DIOS TE SALVE MARIA, LLENA ERES DE GRACIA, EL SEÑOR ES CONTIGO. There was a shelter dedicated to local Native American communities, and there was Leona’s Restaurante, which advertised Frito pies and nachos, but appeared to be closed.
The church itself is much smaller than almost any Catholic church I have visited, wooden and rough-hewn. Amy whispered that El Santuario emphasizes suffering and death as opposed to the resurrection, and it is true—a macabre Christ on the cross is marked with gaping wounds, and the Stations of the Cross are dark with violence in their depictions of Christ condemned. “Son though he was, he learned obedience from what he suffered,” reads Hebrews 5:8. Believers, too, suffer, as 2 Corinthians 1:5 tells us that “for just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ.” I never did become a Catholic, but in my illness I became hungry to understand suffering; if I could understand it, I could perhaps suffer less, and even find comfort in the understanding. Books I consulted included Man’s Search for Meaning and No Mud, No Lotus, which suggest, respectively, logotherapy and Buddhism. What I have found difficult is not seeking an escape hatch out of pain, whether that be pills, alcohol, or the dogged pursuit of a cure. In suffering, I am always looking for a way out.
And in the back of El Santuario, after soaking in the agony of Christ, we found the way out—the hope—the el pocito with a dirt floor, barely big enough for three people at a time to scoop out its miraculous holy dirt. It was the site where, a sign told us, the crucifix of the Lord of Esquipulas was found by Don Bernardo de la Encarnación Abeyta in 1910—the miracle that birthed El Santuario de Chimayó. On the wall of the room sign read:
IF YOU ARE A STRANGER, IF YOU ARE WEARY FROM THE STRUGGLES IN LIFE, WHETHER YOU HAVE A HANDICAP, WHETHER YOU HAVE A BROKEN HEART, FOLLOW THE LONG MOUNTAIN ROAD, FIND A HOME IN CHIMAYÓ.
—G. Mendoza
To remove the holy dirt, we used orange-and-black plastic children’s shovels that were half-plunged into the pit. The dirt was more like silt, and sparkled in the sunlight that leaked in from a small window. None of us had brought a container, so we gingerly walked with the dirt in our cupped hands to the gift shop, where we bought decorative containers to take it home in.
Adjacent to one of Chimayó’s many gift shops was a small museum. In this one-room museum I learned, through a large informational plaque, that in 1977, a twenty-one-year-old man named Jose Rodriguez carried a 250-pound, nine-foot-tall cross on a thirty-two-mile trek from the Rosario Chapel to Chimayó. When asked why he made the pilgrimage, Rodriguez responded that he was simply fulfilling a promise he made to the Lord three months prior. The promise itself was never reported, and neither was the outcome, if one was hoped for, of his journey, which is to say this: a young man walked a long way with a heavy burden to the site of a miracle.
Two weeks after I returned to San Francisco, my psychiatrist began the process of referring me to a medical specialist at Stanford. This was thanks to a research paper that my psychiatrist had come across in her studies, about another woman who also had antibodies for the calcium channel Ab P/Q type and symptoms of dysautonomia. Upon treatment with plasmapheresis, my doctor told me, the woman was cured, and so we began the long process of seeking my HMO’s approval to send me to a doctor in the Stanford Autonomic Disorders Program, which is housed in the Neurology and Neurological Sciences Department at Stanford Medicine.
I was told that nine hundred pages of my medical records were sent to Stanford. In the referral authorization itself, I was listed as having two diagnoses: schizoaffective disorder, bipolar type and idiopathic peripheral neuropathy. There was no mention of fibromyalgia, complex PTSD, dysautonomia/POTS, chronic Lyme disease, or any of the other diagnoses I’d received over the years.
The possibility of uncovering something new thrilled me, and I anticipated the visit with fervor. By the time I saw Dr. J at the Autonomic Disorders Program, I was using a cane to help with fatigue and dizziness, and praying for some canny new insight. I hoped for a declaration. Here it is, he’d say, the thing that’s been undergirding your misery for the last five years. And yet illnesses, like the geography of the schizophrenias, are hardly so simple. On a Tuesday morning, Dr. J finally examined me. He asked questions. He prodded and looked and ordered tests. C. and I went home feeling, as C. said, cautiously optimistic.
I received a lengthy report, which was addressed to my doctors, weeks later. Dr. J mentioned my LLMD, slighting him with the descriptor “who is presumably a Lyme specialist”; he had specifically told me at the office to seek no more treatment for chronic Lyme. The report prefaced every unusual finding with the word “surprisingly,” as in: “Surprisingly, she had mild nystagmus,” and “Surprisingly, she had increased glabellar reflex,” and “Surprisingly, Romberg’s was weakly positive to the right.”
“Mrs. Wang has an interesting presentation,” he said, and concluded with “It was good to see Mrs. Wang … I will be arranging communication with your office regarding her management, but will be happy to see her in the future if the need arises.”
Hope, I write in my journal, is a curse and a gift.
The test results all came back negative. People congratulated me on this news, but I sought comfort in those who understood that negative test results meant no answers—meant Dr. J’s diminished interest in my case and thus in my suffering—meant that I had no avenue of treatment to pursue and no kind of cure in my sight line. Ever since then, I have continued to experience monthly fevers and daily fatigue, as well as a constellation of other symptoms that have been brought to, of all people, a cardiologist. In the meantime, I am more well now in 2018 than I was in 2016, and more well in that year than in the four years prior to that one, which seemed to indicate something—but what, I am not sure. All I can do now is wait for spontaneous remission.
I take Haldol and Seroquel, two powerful antipsychotics that are either extraneous chemical additives or essential medications that keep me stable. I am not willing to experiment to see which. Haldol is not often taken these days, much as MAOIs (monoamine oxidase inhibitors) are profoundly less popular antidepressants than SSRIs (selective serotonin reuptake inhibitors); a GenX friend has told me that it is a “thing” now for millennials to abuse the newer, soporific drug Seroquel, which seems bizarre to me. I experience mild psychosis here and there, but do not consider it possible to ever be completely free of the schizophrenias. They have been with me for too long, I think, to be obliterated, unlike these more recent ailments, which feel like part of the wrong narrative, and make me wonder how many different types of sick girl I can be.