An offensively long essay about how life lessons from Tori Amos have helped me see that anger and rage can be useful, but in the end compassion, creativity and setting fire to long-held assumptions may be the only way to end the Lyme disease wars.
Tori Amos has been my favorite musician and in a sense she has served as both a muse and a teacher to me since the late 1990s. In her 20s and 30s, at the apex of her renown, Amos’s cryptic lyrics and her musical compositions spanned a wide array of styles and subjects. That hasn’t changed as she has matured.
One thing that has changed, though, is that while she garnered a lot of attention early in her career for passion that sometimes broached anger and sometimes blasted through anger to transform into raw visceral rage, the older-and-wiser Tori Amos has been described as “mellow.” In my opinion, that mellowness is a manifestation of wisdom and hard-won life lessons. I’m not suggesting that one approach is better than the other, but I do think that one is more thoughtful, informed by a lifetime of conscientious, conscious reflection.
Amos is a classically trained pianist, a prodigy and the youngest person ever admitted to the Peabody Conservatory preparatory, at age five. By age 12, her strong individuality and self-confidence asserted itself, and she had decided that she wanted to compose her own music, not just play compositions that had been written eons ago by now-dead men. She was told that as a woman she could play men’s music, but that music written by a woman would not be accepted in the classical music world. So she left the classical music world, determined to become a rock-and-roll artist. Listening to the music of her early career, especially when informed by interviews, it’s easy to understand where Tori Amos’s rage came from: She grew up in the household of a Methodist minister who, while he loves her, seems to have asserted control over her life based upon religious teachings. She was accepted with a full scholarship into an elite institution for musicians as a prodigy, and then her prodigious genius was denied to her by controlling administrators. She then got into the recording business, where she had to battle with producers who at once told her she’s a brilliant musician, and at the same time that they would not produce her music unless she agreed to replace all the pianos and keyboards with guitars. She was raped by a fan who she naively agreed to drive home after a small concert early in her career. It goes on.
So Tori Amos had a grudge not against men, as often was written about her, but against what she calls the patriarchy. She is a sovereign, strong-willed soul born into a world that has never stopped trying to suppress her nature or control her unique visions and creations.
This even happened in a medical capacity. In her memoir, Piece by Piece, written with Ann Powers, Amos describes an incident that despite my admiration of her, I confess I had a difficult time believing. I read the memoir before Lyme disease had truly ravaged my life, and before I stumbled into a surreal world in which public health agencies are vested at least in part in interests other than public health, and in which I discovered the hard way doctors can do as much harm as they can help.
Amos writes this:
I really wanted to go on this trip. But talking to my sister [a medical doctor], I decided to act on my health instead of just enduring it. I went to a doctor who was supposedly one of the best. Little did I know, this guy would later be questioned for removing women’s body parts. There was a major British documentary about it. I went to this guy not knowing that he was going to book me that afternoon to take out my fallopian tube. He said I had an ectopic pregnancy. I knew it was wrong when he examined me, shoving this huge thing up me–talk about piercing, talk about pain. It was just this old medieval kind of instrument, he shoved up, and blood gushed everywhere. I knew I had to be in the studio in a couple of hours, singing in front of a seventy-piece orchestra…
My sister, Dr. Marie Dobyns, had said, “get me on the line when you’re with that doctor. I will be up at four a.m. waiting for your phone call before I go to the hospital to do my rounds.” So that morning, after I had tests, this doctor character got my sister on the phone while I was sitting there, and he made some kind of negative comment about a female doctor. She just cut right through and demanded, “What are Tori’s hormone levels?” He told her what they were and said, “She has an ectopic and I want to take her today.” My sister didn’t say anything to him at that moment, but when he handed me the line she said to me, “Baby, listen to me like you’ve never listened to anybody in your life–calmly you are going to have to run for your life…he’s going to destroy your insides. I don’t care what you tell him, but get out of there now and call me as soon as you’re outside in your car. I’ll be waiting right here, and I’d better hear from you in five minutes…”
My hands were shaking, which is unusual for a piano player, as I put the phone down…I told the doctor I couldn’t go in that day but that I was ready to come back the next day….as I was leaving, he said, ‘So, Miss Amos, you know I dealt with one of the Beatles before.’ It was just unbelievable. My heart was palpitating. And I said, ‘I’m going to do strings at the studio.’ And he said, ‘I know where you’ll be and you’d better be back tonight–releasing you is against my better judgment.’ Obviously he knew I didn’t have an ectopic, so he knew it wasn’t quote-unquote life or death for me. He was just going to take my fallopian tube and had talked about in vitro. He told me not to worry if I lost my fallopian tube, that there was in vitro. And little did I know, he had a huge in vitro practice.
Amos flew back to the U.S.
My sister and my parents met me at the airport, and as soon as I got off the plane they took me right to the hospital. I went in and was diagnosed with a bleeding cyst. They also felt that something had occurred that didn’t work–a pregnancy that didn’t attach. So I got a D&C. And then I flew back to England.
As I said, despite my admiration for Amos’s talents, her intelligence and her integrity, I found this “insane doctor” difficult to buy when I read this in 2005. Given my own experiences since then, I no longer doubt any aspect of it. (In 2014, the Census Bureau sent a field worker to my home to demand that I participate in the CDC National Health Interview Survey. The survey is voluntary, according to all information from the CDC and the Census, and according to the official letter I received. I attempted to opt out in the interest of protecting the privacy of my health information, and the field worker–who identified himself as “a doctor with the CDC” told me (all his words) that “no doesn’t mean no” to the government, there is no way to opt out of the survey,
Ultimately, Amos suffered for months with medical complications, pain and other discomfort, and the lessons she derived from the bizarre event were that “Going through this horror, I was humbled by what it was to be a human woman,” that she had to take care of herself and her own body, not to push the limits too far. “I could be a female icon…but…if you put yourself at the center you’ve stopped becoming part of the cocreation. You have to understand you’re a piece of it. To not behave that way is like a doctor playing God.”
This event was a turning point for Amos, and I think it’s one that almost all of us reach at some point in our lives, all in different ways. For chronic illness patients, particularly those of us who are affected at a relatively young age, we fight against the illness relentlessly expecting that one of these days we’ll break through and overcome limitations. But as I wrote a couple of days ago, some limitations present themselves and no amount of wishful thinking or effort will overcome them. We accept, for example, that gravitational force is a law of nature. In early childhood, we knock things over or throw things up in the air and marvel as they always, always come crashing down. Then we fall on our faces and learn through hard-won experiences that, nope, there’s just no overcoming this. We don’t resent it. We aren’t angry at gravity. We don’t ask why we are beholden to gravity. As much as we may want to flap our arms or strap on a cape and take to the sky, in the waking world there are some limitations that just are parts of reality, and so we go on with life.
Of course, part of youth is testing those limits and sometimes finding elation in defying them–not in a literal sense, but in a figurative sense that still is satisfying.
A young Tori Amos wrote a song called “Take To The Sky” whose chorus describes the conflict of her dreams and desires with external criticisms and limitations. Since the lyrics are more or less in sentence form unlike many of her more poetic songs, I’ll present them in sentence form so that the thoughts can be tracked more easily.
This house is like Russia with eyes cold and gray. You’ve got me moving in a circle. I dyed my hair red today. I’ve just want a little passion to hold me in the dark. I know I’ve got some magic buried deep in my heart, yeah, but my priest says, “You ain’t savin’ no souls.” My father says, “You ain’t makin’ any money.” My doctor says, “You just took it to the limit.” And here I stand with this sword in my hand. You can say it one more time, what you don’t like. Let me hear it one more time then have a seat while I take to the sky.
My heart is like the ocean. It gets in the way. So close to touching freedom, then I hear the guards call my name. My priest says, “You ain’t savin’ no souls.” My father says, “You ain’t makin’ any money.” My doctor says, “You just took it to the limit.” And here I stand with this sword in my hand. You can say it one more time, what you don’t like. Let me hear it one more time then have a seat while I take to the sky.
So in her 20s, Amos defied her priest, her father, her doctor, and this defiance is the passion that fueled it launched and sustained her for years. In her 30s, Amos learned that some physical limitations do exist, particularly as relates to health, and she did “push it to the limit” and her body pushed back enough that she realized her role in “cocreation” of her life and the responsibility that comes with it. She wasn’t only a dominating force with a superpower to overcome limitations and prove everyone wrong; she was also a co-creator of her own life, responsible to herself and her body to respect certain limits and, for example, to rest when needed.
Notice, though, that Amos wasn’t silenced by this. The breakthrough song of her career in fact was called “Silent All These Years,” and despite obtuse lyrics, the song was entirely relatable to millions–and particularly to a lot of women. Once Amos realized in her early 20s that she had allowed others to bury her voice, she found that voice, retrieved it, projected it, and vowed never to let anyone take it away again. That never changed.
I recounted the medical incident above here for a few reasons. One is that the writing on this site is written primarily for other people who have Lyme disease, people whose voices have been publicly silenced and buried by louder, more powerful voices.
Amos throughout her career has spoken of the patriarchy that is so pervasively institutionalized that no matter what women say or do, they are always within the confines of controlling factors of social norms and expectations based on traditions, anything from feeling forced to assume an identity aligned with polarized archetypes of “the virgin” or “the whore” to expecting to be silent about sexual abuses to record executives who force women to accept marketed versions of themselves that may not related in any way to their authentic identities: a prodigal musician, for example, who writes music and lyrics, performs music and lyrics, and self-produces, being represented on an album cover by an alluring body in skimpy clothing with come-hither body language. None of that suggests the creative intelligence or the incredible technical gifts that actually are the music under that cover. But guess who decides what goes on the cover? And guess who is contractually obligated in most instances to accept being depicted as a coy sex kitten when that’s one fragment of a complex psychological being whose primary identity is more of a musical version of Einstein’s mind.
As someone who deeply appreciates Amos’s artistry, I have difficulty imagining her even as a child in her home being truly silent. She’s always had a voice. I suspect she frequently used that voice in her home, in school, on the playground and on the street, and that she never felt she was heard–because I also suspect she was never really heard until she made a lot of noise.
There are lessons in that: Be loud. Be forceful. Be who you are and don’t let people diminish that person or your faith in that person.
Lyme disease patients have to do this. We’ve all got voices and we need to insist on being heard. I was taught while studying English never to write “needless to say” because, well, if you need not say it then whatever you’re saying doesn’t need to be said. Not always. Needless to say, the growing numbers of patients with poorly understood chronic illnesses are not going to shut up and retreat to the shadows. Eventually our voices are going to break through.
Just as Tori Amos, Madonna and other women who have found artistic and commercial success have demonstrated the preposterousness of the eons-long depictions of women as either virgins or whores, the Lyme disease community has been popularly reduced into a couple of camps that do not represent who we really are. Instead of virgin/whore, it’s confused/crazy–one false version is the innocent, the other the demon.
Listening to certain representatives of the Infectious Diseases Society of America (IDSA) and in some cases science writers who assume and then broadcast these fallacious depictions (which when considered rationally for even just a few minutes fall apart as much as the virgin/whore identities do), it’s easy to see that these parties offer no middle ground whatsoever.
In Slate, for example, former health editor (now health editor at The Washington Post) Laura Helmuth describes Lyme disease patients as “vulnerable, confused people” whose symptoms she says are real, but “…likely [only] depression.” This is the innocent, naive victim version of who we are–the virgin aspect–not representative of reality, but of a false identity created by those who determine to know more and better than we do about ourselves.
In the same article, Helmuth calls Lyme disease patients “conspiracy theorists,” and in a tweet to promote the story, she calls us “truthers,” oddly–especially for a science writer with “a stellar career” as a colleague at The Washington Post described her when I wrote a letter of complaint–attempting to make Lyme disease a partisan political issue, suggesting that Lyme disease patients are idiots who would be easily manipulated to vote for Mitt Romney. This would be the demonizing version of the story; I can’t speak to her intention, but it is plain to see that Helmuth went out of her way to present both the innocent-victim stereotype of Lyme patients alongside the insane-demon version in an article published by a national online magazine under the guise of health information, and Helmuth took this marginalization even further by suggesting to Slate‘s unwitting, mostly liberal readers that people who suffer from Lyme disease somehow are aligned with the then-Republican party presidential candidate. That’s bizarre. As a Lyme disease patient, discovering this information five years after it was published is deeply upsetting. It is black-and-white evidence of an institution that I can correlate directly with the patriarchy of which Tori Amos speaks.
Amos says the patriarchy misrepresents women in an unrealistically simplified way, and uses this misrepresentation to gaslight women into believing that they are those stereotypes, to galvanize men and women against accepting truer understandings and accounts of women as individuals every bit as intelligent and innovative as men, and to silence women’s voices first by not giving them the opportunity to speak for themselves when they oppose the false popular view–only to be spoken about–and secondarily by drowning out women’s voice with greater noise from men of greater renown.
This dichotomy of Lyme disease patients being either a) tens of thousands of people who are tricked by medical doctors into thinking that their medical treatments actually work on physical symptoms when they don’t or b) tens of thousands of people who collectively all have an emotional imbalance that manifests as precisely the same physical symptoms, and which respond to antibiotic treatment but not to other medications don’t make any sense at all from a logical, rational perspective, but neither does the virgin/whore thing, and people have been gobbling that up for millennia.
Spokespeople from the IDSA and, at times, from the CDC, always describe us in one of these polar terms: the innocent, naive victim of predatory doctors, or else the aggressively mentally ill people who suffer from a collective delusion that we are ill with relatively consistent, often debilitating physical illnesses that are no more than “depression,” as the stellar Helmuth describes.
In response to a lifetime of being forced to assume a false identity–the minister’s good-girl daughter or bad-girl rock star–Amos, only after a traumatic rape event, fell into desperation that begat self-exploration and which ultimately took away all the noise of the failed and ill-fitting rock band she had become a part of, and she fulfilled her contract with Atlantic Records by doing something unheard of in the early 1990s, when noisy, angry grunge music had taken over radios and MTV: She sat down at her piano, alone, and wrote plaintive, honest songs. Today, I see the essays written by Lyme patients and tearful celebrity pleas on national news programs and magazine covers as correlates of Amos’s songs. These are people who are being misrepresented, maligned, manipulated and controlled, and whose agency of their own lives and bodies is forcibly stripped away and dismissed. What are they to do aside from announce, time after time, “My life experience is not delusion, and I am not going to stand for it anymore.”
Avril Lavigne on Good Morning America cried as she told the world “this is what they do to people that have Lyme disease. They don’t have an answer for them, so they tell them, like, they tell them, ‘You’re crazy.'”
Lavigne is not only one of countless Lyme disease patients who says this; she is one of many well-known people who has said this publicly. This has been received by some as a “fad” and that, again, is gaslighting. It’s not a fad. Young, beautiful, wealthy people like Lavigne do not want to slam on the brakes and forgo everything good in life to take to bed, visit scores of doctors who insult their sanity and intelligence, and then reveal their most personal health information via national media just for kicks. To imagine even a single individual doing this as a manifestation of some kind of mental illness or personality disorder is a stretch. To suppose that musician Lavigne, actor Alec Baldwin, musician Shania Twain, musician Daryl Hall, musician Kris Kristofferson, author Amy Tan, television personalities Kelly Osbourne and Yolanda Hadid, supermodel Bella Hadid, musician Jesse Ruben, songwriter Dana Parish and so many others who have nothing else in common all have jumped on the I-have-a-fake-disease bandwagon for personal kicks is insane. It’s truly, truly insane to give that even a passing thought. And yet that is the prevailing thought. Why? How?
Certainly, I understand the anger and even rage of some Lyme disease patients in the face of these egregious abuses against them. I should say “us,” since I am one of these people. Except that I’m not enraged, not now, and that’s actually been a bit of a contentious matter with a few people.
I’m not enraged for a couple of reasons. First, and this is absolutely true, I am grateful every day to be here–period. Five years ago, even three years ago, I thought that my life’s expiration date was coming upon me like a train–loud, hurtling toward me, too big and fast to stop. As my health deteriorated, as doctor after doctor was alarmed by my health problems and then ordered tests and told me nothing, or nothing knowable, was wrong with me, I was bedbound and in pain that can’t really be conveyed through words. I am talking about physical pain of all manner, from electrical shock pains in my extremities to what Jesse Ruben describes in one of his songs as “burning bones.” Also emotional pain. Lyme disease is known to science–despite any naysaying infectious-disease specialists or science writers who always have one of a few excuses at the ready to dismiss certain realities–to infect and inflame the central nervous system, and this in many patients manifests as psychiatric symptoms. From my 20s into my 30s, my mental health declined in fits and starts, often abruptly, transitioning from mild depression to social anxiety to sudden-onset panic disorder that occasionally created paranoia and even psychosis in a few instances, to absolute bleakness. The truth is that I had been suicidal throughout my 20s and 30s, and in my 30s I began to see a psychiatrist and I was prescribed up to four psychiatric medications at times to quiet severe symptoms. Defaulting to wanting to die had become my normal mode of operation. Then I was diagnosed with Lyme and Bartonella infections, treated with antibiotics, and after about five months my body no longer tortured me. Within a few more months, still seeing a psychiatrist monthly, that doctor and I both noticed something remarkable: I was no longer suicidal. At all. I was no longer even having social anxiety, which I assumed was an aspect of my personality, not a mental health concern.
For years I hoped to die as a way out of my tortured body and mind. Unexpectedly, I got an explanation of what was wrong with me after I had given up hope, and coincidentally, I was no longer suicidal. This in a way has been difficult to integrate into my daily life: I’m “normal” in a way I have not been during my adult life, finally not wanting my life to be over.
And since I fully expected a few years ago that I would be dead within a year or two from my degrading health or by my own hand in order to escape my degrading health, every single day now feels like bonus time. I truly understand now what those who go through near-death experiences feel: I don’t have grandiose plans for my life; it’s not about setting big goals and trying to create myself into some kind of great thing. I was like that when I was younger. Now I’m not disappointed by what I didn’t accomplish every day; instead, I am grateful every morning for another bonus.
What’s a guy to do with these bonus days that follow a thwarted expiration date? This guy has decided my mission is simply to speak truth and to seek truth. Many people seek truth through anger, rage and sometimes even through revenge. I’ve listened to Tori Amos for too long to do that.
Amos’s early music often processed her frustrations with anger and rage. Her first quartet of solo albums were alternative pop and rock, and she is perhaps the only person to have effectively turned a harpsichord into a sonic weapon following a breakup on songs like “Professional Widow,” “Blood Roses” and “Caught a Lite Sneeze.” Those songs are from her album Boys for Pele–probably my favorite album, incidentally, because of its visceral honesty and experimental artistry–and it is worth noting that that album, her third album, was reviled by many of the critics who lauded her softer, more pop-oriented first and second albums. Why did these critics dislike Pele? It is the album that made many people (male people) label Amos a “man hater” because in the lyrics she raged about a recently ended relationship and called on the solidarity of women–“boys on my life side/boys on my right side/boys in the middle/and you’re not here/boys in their dresses/and you’re not here/I need a big loan/from the girl zone.”
Topically, the first chapter of Amos’s career was dedicated to romantic and familial relationships, often with a critical focus on men attempting to control women, and women forgoing opportunities to support one another, set against a backdrop of cultural norms established by traditional Judeo-Christian patriarchy. Admittedly not what everyone wants to listen to on a long drive.
The next chapter, beginning with the 2002 album Scarlet’s Walk, took a broader-scale view of the landscape of life–literally, at least in the song “I Can’t See New York,” in which Amos sings from an airplane passing over or through a metropolis lost in a sea of smoke and cloud. On this album, Amos loftily–and successfully by most accounts–simultaneously observes her own life during a cross-American car trip; the life of a fictional character-slash-facet of Amos’s personality, “Scarlet”; the political, cultural and spiritual identities of American Indian people, the spirit of the United States of America, and the geography of the country, including the land’s own spiritual identity. (The last of these is easily dismissed by contemporary Westerners as too New Age-y for its own good, but in the context of indigenous beliefs, it not only makes sense but is necessary to the story Amos tells here. Literate people may think of this as an aspect of magical realism, which, yes, has its place in music as well as in fiction made to be read.) What is all of this novelistic mishmash? Over time, I’ve come to understand it as a psychological and songwriting breakthrough: Finally, rather than ranting and railing against forces that have attempted to control her and attempted to depict her as a virgin or a whore, in overly simplistic ways, Amos shows us, she demonstrates, her brilliant world view. We see an aspect of life through her eyes. We don’t hear her tell us what has been done to her by others; we see America as a living, breathing creature, imbued in Amos’s perceptive reality as a flawed, complex, beautiful being.
The only real criticisms of Scarlet’s Walk, by both Amos’s die-hard fanatics and by music critics, had to do with the sound. The album was uncharacteristically mellow, bereft of frenetic rage. People expected that to be simply the style of this album–notably, an album that followed the birth of her daughter. But the next album, The Beekeeper, whose title song deals with the near-death of her mother, was even more mellow. With that, Amos lost a lot of fans who dismissed her suddenly as a sentimental mother, just some aging lady who no longer had anything significant to say. That’s a shame.
Around 2010, Tori Amos was approached by representatives of Deutsche Grammophon, a classical music record label. They wanted her to produce an album of music in the classical genre. Talk about mellowing out. This, according to Amos, was a challenge: She had forsaken classical music and rebelled against it at age 12 after having been told that a woman like her would never be accepted as anything other than a piano player. This was a challenge, being rusty on classical music, an opportunity to prove naysayers wrong, and a psychological challenge to confront deeply buried resentment.
Amos’s approach was expectedly unconventional: She appropriated songs of her choice composed by “dead white men,” selecting and rearranging pieces of music and converting them into classical-pop songs onto which she added her own words. Compositions by Chopin, Schubert, Bach, Debussy, Alkan and others were strung together with a narrative that sounds on the surface utterly preposterous: A woman who Tori calls Tori suffers a traumatic relationship breakup with “him” (“he” may be heard on one listen as a male romantic partner, on another as God), in a state of heartbreak drinks a psychedelic cactus juice, and then takes an all-night journey of the soul during which she meets a mythological shape-shifter called Annabelle (played by Amos’s daughter, a child at the time) who serves as a spiritual counselor, travels thousands of years back in time to when she lived with “him” in Ireland and together they worked as warrior-poets who lost their land and spirituality to invaders who forced monotheistic religion on them, forward in time and space to meet a “fire muse” (played by her niece). Both Annabelle and the fire muse tutor Tori on how to channel fear, anger and rage into more useful and productive reactions: love and creativity. This album, as nuts as the plotline sounds, is a brilliant story of alchemy of the soul. On Night of Hunters, Amos literally sings to her daughter about her life’s challenges, and has her daughter sing back to her the lessons taken from a lifetime of challenges.
On “The Chase,” an arguably silly-sounding song, Tori’s real-life daughter in the costume of Annabelle is a spirit guide that Tori could have used when she was younger:
Tori: Out there are hunters–
Annabelle: Let’s say predators.
Tori: I have weapons that could destroy them.
Annabelle: You must out-create. It’s the only way. I am the hunter and the hunted joined together.
Tori: You create duality.
Annabelle: And neutrality. I must leave you with the fire muse. Show her the riddle. It is serious if you lose out there–
Tori: I’ll be the hare.
Annabelle: Then I’m the greyhound chasing after you.
Tori: Then I will change my frequency to a fish that thinks.
Annabelle: Then you will find yourself in the paws of the otter, near her jaws…
Tori: Then I’ll grow my wings as a flying thing.
Annabelle: Flying thing! You’ll be warned I’m the falcon.
Tori: Watch me change to a grain of corn!
Annabelle: A grain of corn?! Hear the alarm in your head. I’m the hen black and red and you’re in my barn. They would have won. Use your head or you’ll be dead.
The term “psychedelic,” despite pervasive stigmatization, literally translates to “soul revealing.” In the song, Tori’s figurative or literal (you decide) psychedelic exploration introduces her to a soul tutor of a sort, and that tutor teaches her how to shape shift. Quite an accomplishment, you have to admit. But Tori doesn’t understand how to use this remarkable superpower. Her tutor Annabelle challenges her to use it wisely, and Tori’s response is that she will use it to change into various forms that should be able to out-run or hide from her predator. The wiser Annabelle demonstrates to Tori that no matter how or where Tori runs and hides, the predator will always compete and ultimately will catch up to her. Her final warning: “Use your head or you’ll be dead.” The fear won’t save you. Hiding won’t save you. “You must out-create,” she says. “It’s the only way.”
That’s a lesson for all of us. Running, hiding, trying to stay under the radar doesn’t serve anyone. If you run, you’ll probably always be on the run. Even if you’re not, if you find somewhere safe to hide, you’ll always be hiding away in fear.
So fine. Tori learns this lesson from Annabelle, the shape-shifting fox-goose deity. (Go ahead and laugh–“shapeshifting fox-goose.” Super wacky, yes. But this album deals with mythology and the cosmos, and it turns out that Annabelle has a correlate in the stars in the form of Vulpecula, a constellation whose name means “little fox.” At times in history, the constellation has been depicted as a fox with a goose in its mouth; over time, that changed to eliminate the goose; and with the passage of more time, the goose made a re-appearance. The constellation itself is a shape shifter, a fox and (sometimes) a goose–hunter and hunted together in the stars. All of Amos’s crazy-for-the-sake-of-sounding-crazy antics have some kind of basis, often to be found somewhere between mythology, art and science. On this album, Amos unabashedly takes a soul’s journey through time and space–literally planets and stars–and mines their lessons. People who hear easy listening aren’t listening hard enough.)
Tori Amos’s “angry” 1996 album, Boys for Pele, invokes the name of the Hawaiian volcano goddess Pele, and in her music, Amos inverts the history of tossing a female virgin into a volcano to appease the angry deity and instead suggests throwing boys to her. The Boys for Pele album artwork depicts Amos setting fire to a beloved piano–if you knew anything about Amos, you’d understand the magnitude of this visual statement. Pianos are sacred to this musician.
Amos was 33 when Boys for Pele was released. The fire that fuels the album is in large part rage and anger. But rage and anger are in the long term symptoms of growing pains, of uncomfortable change, of metamorphosis.
Amos was nearing 50 when Night of Hunters was released. That album also prominently features fire–notably, in the hymn-like “Your Ghost,” adapted from Robert Schumann’s Theme and Variations in E-flat major, WoO 24 from Ghost Variations, in which Amos sings “Your ghost has shown me/Our primroses could survive the frost/If a gentle rivulet of flame is sustained tenderly.” So here, the flame is gentle and nurturing, sustaining a relationship after a breakup, and needing care in order to be sustained.
More notably, fire is featured as the Fire Muse character. This is significant to the album, and it’s significant to me as a life lesson.
Fire, elementally speaking, is capable of destroying, but with and without destruction, it’s also necessary for transformation. Even cooking is nothing more than a kind of chemistry involving the transformation of fire. In this sense, it’s nurturing.
This, I believe, is a necessary lesson that people burdened with chronic illnesses should embrace. After the song “The Chase,” discussed above, Amos gives us the song “Night of Hunters,” also the title of the album. Like “The Chase,” this song is a dialogue between the Tori character and the Fire Muse character. Tori has played a game of cat-and-mouse with Annabelle, trying to hide from and outrun the shapeshifter with her newfound ability to also change form. In the end, Annabelle tells Tori that Tori’s only chance of survival is to out-create whomever or whatever is chasing her. “Use your head or you’ll be dead.” When “Night of Hunters” opens, Tori has taken on the form of a rose. The Fire Muse addresses her:
Fire Muse: Rose so red, this night of hunters find love instead of their blood by your thorn. Dark forces are out there gathering. Some hunt for power, others to invade children’s dreams.
Tori (as Rose): They must pay this night of hunters.
Fire Muse: Find love instead of their blood by your thorn.
The Fire Muse calls out to Tori, and Tori repeats the muse’s words, integrating them into her psyche.
What’s happening here is that Tori, with guidance from introspection, time, and distance, has taken an epic journey, which happens to be a journey of life as viewed through the lens of a person’s psyche. She is maturing, with age reflecting on the anger and rage she felt when she was younger, and how those resulted from disappointment. From fear, she had been running and hiding, but the psyche can never out-run or hide from traumas. Past traumas are future hunters. As out-there as these concepts are from a conscious standpoint, they are absolute truths about the psyche. I’m 39 as I write this, and so I probably have many years ahead through which my perspectives will change and I’ll continue to learn that what I “knew” years before was perhaps true in the moment but not necessarily always for everyone. I do think that this lesson from Amos will hold up: When you’re haunted by predators planted inside you by people outside of you, you can run and hide, but unless you address them directly, confront them and–don’t hate me for saying this–learn to love them, at least in the sense of not reacting how they want you to–they will always have power over you.
Earlier in the album Night of Hunters, when Tori first meets Annabelle, Annabelle “inducts” Tori into “the drink of the cactus practice.” Not every song on the album is a duet, but this is another.
Tori: Maybe he and I are–
Annabelle: like a pair of suns that are captured, eternally linked into chasing each other’s spin.
Tori: Eternally linked into chasing each other’s spin…bound by beliefs–
Annabelle: …that have become steel cords [/chords].
Tori: Why the disharmony? Let’s re-sing my world.
Tori drinks the cactus and begins an album-long process of introspection…
Tori: Are you saying I’m–
Annabelle: Reactive, but I can work with it, Doll Face.
Tori: Every couple has their version of what they call the truth. Call all that lies–
Annabelle: beneath both stories–
Tori: –back to my fire.
Annabelle: Embrace what you find.
Tori: With a harmonic defiance, I’ll face this.
Thus begins Tori’s night-long adventure of self-discovery, re-living of past traumas and forgotten memories that affect her in the present, and healing. This process began with acknowledging that she has contributed to a relationship involving two individuals orbiting one another, “chasing each other’s spin,” and getting nowhere. They’re bound by beliefs that have become steel cords, or musical chords, operating in disharmony. It’s not healthy. It’s not good for anything. And it’s not going to get anywhere as long as she holds onto her beliefs, which she learns are true only for her. To change it, she’s got to recall the belief system she has created back to the fire, which serves as both an incinerator and an incubator, and re-examine what has gotten her to this place–both stories of both individuals, one of whom is her and one of whom is someone else’s, and look at them objectively. And then, she is told, she must embrace what she finds.
This is so important.
I was listening to a podcast interview with the writer of a memoir, and she discovered through the process of writing that, in fact, different people legitimately have different life stories, sometimes overlapping, and sometimes there’s no resolution. She gave an example of a good childhood friend of hers whom she had written about in the memoir. This was a close friend, someone with whom she had had many adventures and learned many lessons. Her sister read the memoir and dropped a bomb: That friend never existed. “What are you talking about?” the author said. She was her best friend; of course she existed. No, insisted her sister. I spent my life with you, and no such person ever existed.
So the author went through all her records, photos, letters, etc. She found no evidence of her childhood friend–but then she didn’t really have photos of any of her childhood friends.
She had spent her life believing in this friend. She still believed in this friend. But her sister said this friend didn’t exist. Her sister’s insistent claim made her feel crazy for a while. Some of their relatives thought the friend existed, some didn’t. Eventually, the author settled on an unnerving and fascinating aspect of reality: Every single person lives in an entirely different world. It is possible, given a lack of physical evidence, that her friend only ever existed in her head (although she is certain that that is not the case). She admits this. She accepts it. She knows better. Her sister knows better. They grew up in the same home and lived in utterly separate worlds.
This is the power of perspective, world view, personal experiences and all of these things come together into personal beliefs. Some personal beliefs come together into codified opinions that are then offered to the world as written practices, policies or laws.
Tori Amos’s parable of a couple chasing one another, bound by beliefs that tether them to one another and which cannot be broken because they’re so solid that they’ve alchemically transformed into steel cords, is directly applicable to the Lyme disease debate, also called–appropriately for Amos’s dramatization–the “Lyme wars.”
It’s a war.
Tens of thousands, perhaps hundreds of thousands of people are seriously ill. Many are disabled. Far too many have ended their lives to end their suffering. It’s that extreme.
And then there’s a cohort of governmental officials and medical practitioners who say that all these people, all of them, only believe that they are ill. That alone, given the stakes of the claims, is a declaration of war. It cannot be interpreted as anything else. Some of these people insist that these chronic Lyme patients’ illnesses are “all in their heads.” Some, like the health writer discussed above, say that they are “real” but “likely depression,” nothing more. No physical illness. All agree, it seems, that appropriate medical interventions include evaluation by a psychiatric worker and, if deemed appropriate, liberal prescription of psychotropic medications. These people, despite consistent claims to the contrary by Lyme disease patients, suggest that all the Lyme symptoms, being psychosomatic, will fade away sooner or later with proper psychiatric care, and counseling by friends and family. No other medical intervention necessary or permitted.
To Lyme patients who live inside of their bodies, the extreme pain, neurological dysfunction and cognitive challenges are evidence enough of the disease.
There is sound logic to this observation: If I contracted Lyme disease from a tick, was diagnosed with Lyme disease after developing classic symptoms and treated by a doctor who determined me to be cured, but then the never-before-existing Lyme disease symptoms continued and over time escalated into a full-on assault on my body, it stands to reason that the disease was not cured.
To Lyme patients, there is no logic to common dissenting assertions such as:
- You may have had Lyme disease, and you may have been made aware of Lyme disease by the symptoms that the infection caused. However, if you were treated with doxycycline for up to 28 days and your symptoms have continued, then that is imagined, and you must not talk about it and by all means you must not ask physicians to continue treatment even if that treatment improves your symptoms.
- Your initial Lyme disease symptoms are the result of a physical infection from the Borrelia burgdorferi bacterium. Any symptom that persists or becomes worse after 28 days of antibiotic treatment is imagined and appropriately treated with antidepressants and, if those don’t keep you quiet, antipsychotics.
- Lyme disease patients are conspiracy theorists and truthers who support Mitt Romney. They suffer from depression and nothing more.
- The Washington Post and Slate health editor who made the above claim has a “stellar career,” and therefore her claim is substantiated.
- Those are actual arguments provided by editors of major national publications:
So here’s the thing. I’ve got some fire. I’ve got some anger. I am personally offended by the war against people who have Lyme disease because by what I think are objective measures, a personal war is being waged against Lyme disease patients.
But in consideration of what I’ve learned from Tori Amos’s music, I think we need to call all that lies beneath both stories back to the fire and embrace what we find.
I’ve met hundreds of people who have or whose children Lyme disease, scores of activists. All of them feel marginalized because they are marginalized. By public health agencies and by media. It’s astounding. It’s hard to believe, but when you think about it so is much of reality.
I’ve met a good number of these people who believe, truly, that they know what the Lyme wars are about. These beliefs include, but are not limited to:
- Lyme disease is an epidemic created by Nazi scientists to disable the population.
- Lyme disease is an autoimmune condition caused by a protein extracted from the bacterium that causes Lyme, and spread among the public via vaccines.
- Lyme disease is a persisting bacterial infection.
- Lyme disease is a chronic autoimmune disease caused by an acute bacterial infection. (The CDC seems to be inching toward this direction.)
I’m not rendering judgment on any theories. I don’t know enough to do that. I also believe it is likely that no one or almost no one knows enough to do that. But that’s my belief.
So here’s my question.
What if we threw my belief, and all the beliefs above–the finger-pointing beliefs, the conspiracy-theory beliefs, the absolute assertions by non-scientists that they know what no one else does about how Lyme breaks apart the body and the finger-pointing and nonsensical conspiracy-theory beliefs by cruel and inhumane Lyme disease deniers at federal agencies and medical associations, and science writers who are using their platforms to demonize Lyme patients–into a fire. Destroy them totally.
Let’s start from scratch.
Let’s say that it is 2017 and out of the blue over 300,000 people in the United States of America developed a bizarre rash and severe symptoms from a tick bite. What the hell is that?
And let’s do some Tori Amos-inspired time travel to 2027: Now, as happened with AIDS, all these people who had been diagnosed up to 10 years ago with Lyme disease had all sorts of disabling symptoms that mimicked multiple sclerosis, ALS and Alzheimer’s disease. What the hell is happening here?
The Zika virus has infected approximately 6,000 people in the United States as of June 2017, and almost none of them contracted it within the country–most got it while traveling internationally. Lyme is homegrown. And yet the CDC last year declared Zika a national public health emergency and convinced President Obama to request a billion dollars in emergency funding to combat it. The federal government commits $25 million a year to researching Lyme, which affects more than 50 times as many patients and which has produced symptoms at least as severe as Zika’s worst symptoms. Why hasn’t the government done anything about this epidemic?
Because the government is engaged in a war of beliefs, not a war of science. And so are many Lyme disease patients. It’s time to recall these beliefs.
I am biased as someone who has this disease. With that disclaimer, I’m going to assert what I believe to be an absolutely objective reality: Lyme disease is a pandemic and it is being ignored. The people who have it are being vilified and treated, frankly, like shit.
Common, shared realities always lie between the absolute realities of individuals. We’ve got to do better with this, all of us.
Tori Amos’s career demonstrates that anger and rage have a place. They can be productive. They are sometimes necessary. Amos would not have exploded into the music scene had she not garnered attention for her raw emotional appeal, and her early music would not exist had her fire not been fueled. She had to battle through the recording business. By her account, she had to battle even for her health. There are times when there’s no other way to get anything done, to make progress, to break through barriers and to persist.
At a certain point, fusion can take place and a fire can become self-fueling. For some people it can also become self-consuming, creating a self-destructive supernova. Psychologically speaking, if not physically speaking.
There comes a time when fires burn simply because of old beliefs. When they no longer serve their intended purposes and are just fires for the sake of burning, when they used to burn for a reason. Is that what we want?
No one will win the Lyme wars if people keep battling in the extreme ways they’ve been doing. It’s impossible. Lyme disease activists who resort of childish name calling, who point fingers, and who demand apologies from public health organizations–well, I hate to say it, but it’s wishful thinking.
The United States of America has all manner of atrocious events in its past, from the institution of slavery to Japanese internment to the Tuskegee syphilis experiments on black men, all committed by the government.
Slavery was abolished in 1833; U.S. Congress apologized in 2008.
The federal government apologized for Japanese internment in 1988, but the U.S. Census Bureau continued to deny any involvement in using Census records to identify and arrest Japanese people until 2007, when a statute of limitations ran out and the truth was disclosed: Yes, the Census Bureau did that.
President Bill Clinton apologized for the Tuskegee experiment in 1997, 25 years after it concluded and 65 years after it began; yet the CDC, which administered the experiment, does not apologize or show remorse for its participation in the event on its website. On the CDC website, it notes several times that “the President apologized on behalf of the nation.” On its timeline of events, the CDC asks “What went wrong?” with the experiment, and its answer to the question is that the Associated Press “caused a public outcry.” Others may have different opinions, but I read this as a non-apology and as refusal to accept accountability for an unthinkable ethics violation.
So Lyme patients’ calling for the government to apologize for neglecting and contributing to the ongoing illness of so many people? It’s not going to happen. Lyme patients need to move beyond blame and into action.
What can be done? Research into developing improved diagnostics and determining the etiology of this bizarre disease. The truth is, I believe, that no one really fully understands this monster. So let’s figure it out. Would you rather get well/get your children well, or would you rather be proved right and get an apology?
On the other hand, Lyme disease deniers, including officials from the IDSA and the CDC, need to stop telling patients and the world at large that persisting Lyme disease does not exist. Aside from that little matter of being unethical assholes, the attempt to deny a pervasive and prevalent epidemic is simply foolish. Just as there can never be a genocide against LGBT people–because no matter how many were targeted and killed, we will forever keep popping up among populations–there’s no way to effectively deny and denounce an epidemic.
What is the point of saying people with a debilitating illness are not ill? From the perspective of Lyme disease naysayers, the best-case scenario would be to convince the public at large that there’s no such thing as Lyme disease symptoms that do not resolve following treatment. What are the chances of convincing the public of this in the long term? Absolute zero. Zero chance.
As long as people continue to fall ill, people will continue to fight for treatment. If all people who have persisting Lyme disease are denied treatment, yes, some will give up and suffer in dark silence. Many undoubtedly will take their own lives to end the suffering. (A question to those who refuse to address this plague: Do you really want this? Will your conscience really not haunt you?)
But that won’t last forever. Because when people’s loved ones are sick, they jump to action, too. Musician Rob Thomas is a Lyme advocate because his wife has suffered with the disease for years. The White House social media director and his wife had to declare bankruptcy in an attempt to treat her Lyme disease. Even if the patients were to give up, their husbands will not.
And then there are the mothers of Lyme patients.
Mothers do not give up when their children suffer. Anyone who expects otherwise is extraordinarily foolish.
As long as Lyme disease goes unaddressed, people will continue to battle those who say chronic Lyme disease does not exist. So what is the point of saying chronic Lyme disease does not exist? This is a question we need to pull from the fire and answer.
We’ve all got to be realistic about this to end this war. Easier said than done, since wars are rarely fueled by reason. This war is no different. I understand that Lyme patients, who have been so egregiously damaged and disrespected by Lyme deniers, want apologies and want admissions of guilt. We’ll get those with the passage of time, but in the interim, there’s little in the historic record that suggests the entities that have wronged Lyme patients ever will admit to wrongdoing or apologize. So let’s move on. I understand that Lyme deniers, who have been so callous, judgmental and in the end stubborn believe that they are correct and that the people who live with persisting Lyme are simply depressed or have a different illness. Those people need to understand that they cannot wish away the reality of this disease, and they need to consider shifting their paradigms. Public health agencies, medical associations and boards, and medical doctors need to listen with closed mouths to their patients and work in concert with researchers and patient groups to understand this illness.
Because that is all this is. It’s an illness. There’s no reason to have turned a public health crisis into a public health debate. When a person complains of a sore throat or a headache, nobody doubts her. When people lose the use of a leg, along with mysterious rashes, joint pains, double vision and memory loss, those people are called overly imaginative. This is ridiculous. Continued denial will fuel continued rage. We need transformation. We need empathy. We need basic human decency. Everyone needs to stop, take a breath, and reassess what we believe and what we are fighting for.