The most famous line in The White Album is its first: “We tell ourselves stories in order to live.” Today it is so often quoted that it is almost cliche. Twitter bios, LinkedIn descriptions, admissions essays—you name it—this most ubiquitous of Joan Didion quotes is liable to be there. At first glance, Didion delivers writers a mandate. If stories are survival, then we must cling to them! we hear her say. We must pursue them relentlessly, catch them by the throat! And so we write, wielding The White Album as a battlecry, chasing some singular veracity or, at the very least, verisimilitude. However, as I’ve learned all too well, this is not what Didion meant at all.
It was election day in Louisiana the first time I noticed my face was drooping. Democratic incumbent Governor John Bel Edwards was facing off against Trump-loving challenger Eddie Rispone, and I was sitting in the Jefferson Parish Clerk’s office working as a stringer for The Associated Press, watching the votes come in. I had been active that day, which is what I preferred. Before driving to Jefferson to earn $60 confirming vote tallies, I had spent the day at a yoga teacher training, and after I would go to a party, then a bar to watch a band.
Between my calls to The Associated Press to confirm, yes, what I saw on my screen was the same as what The AP saw on theirs, I decided to take a Snapchat.
Click. As I examined the first selfie I took, I noticed my right eyelid hung lower over my pupil than the left. It was slight, but I thought it made me look dopey, so I deleted the picture and tried again, resolving to keep my eyes equally open.
Click. The droop persisted. Maybe if I just strained harder.
Click. Still droopy.
In image after image, no matter how hard I pulled the muscles of my face, no matter how much might I summoned, my eyelids stubbornly and perceptibly mismatched.
We can debate when the deterioration began, but I now recognize it was before that election night, before my eye sagged, before it occurred to me that, in the worst way, this might all be in my head. After graduating from Tulane University, I did what some graduates of western colleges do: I traveled. By the end of my trip, with many mountains, stupas and blurry hostel nights behind me, conversations were becoming harder to follow. My vocabulary felt further away; words did not pop into my mind as readily as they once did. It was annoying, but I was unconcerned.
After moving back to New Orleans, things worsened. I became lethargic. My experience of thinking changed from words babbling through me like a stream to words rolling as stubbornly and slowly as balls of lead. Thoughts were disjointed, hard to start and then jumpy once they began to move. My copy was written slowly and riddled with errors I just could not see. My boss was unhappy, to say the least.
Soon, I had an episode in which I did not recognize Claiborne Avenue, a main drag in New Orleans on which I had driven hundreds of times. Usually, its long, gradual curve along the shape of the Mississippi River felt perfunctory and intimate in the way the quotidian often does. That night, I felt it all recede into unfamiliarity. I looked around, a mile or two from home, and didn’t know where I was.
That scared me. I made an appointment with a primary care provider. The doctor was condescending when I requested more than the standard blood panel, but the tests were run. I was low on iron and had a sluggish thyroid, the gland that rules metabolism. With supplements, things improved marginally, but I was still really tired.
A few months later, my vision mysteriously and quickly declined. Colors appeared as disembodied smears that moved in space. Shadows appeared in splotches of broad daylight. Once, in a coffee shop, while working on an article about the brain, I went partially blind. An ophthalmologist told me I had mild astigmatism and nearsightedness. She prescribed me reading glasses but said otherwise there was no ocular explanation for my newly unstable vision.
Around the same time, something began to grab the muscle at my right temple and twist it maniacally until the pain grew so bad that, on some nights, I struggled to sleep. The lashing then crawled down the right side of my body, eddying at my ribs, and kicking my lower back before it finally finished at my right foot.
Last, the ability to write well, which had already become tenuous, went further out the window. It only came to me in spurts and flashes. Lucidity, then paralysis. Clarity, then shit. Absolute shit. When things were bad, I could tell my sentences were improper, that the flow was off, but for the life of me I could not fix it. When things were good, I felt like I was flying.
I now suspect my articulation atrophied because meaning was harder to make. There was less poetry in life; things didn’t make sense the way they used to. I felt incoherent, desperate, so I doubled down on that writerly impulse to summarize and make metaphors—and it only made things worse. On a walk back home from a talk given by Maurice Carlos Ruffin at Tulane, I began repeating to myself I am here and there. It became a mantra for me when the world began to spin. I am here and there. At the time, it felt revelatory, symbolic of the interaction between my internal and external environment. Now, I don’t know what the hell it had to do with anything in my head. I can’t translate it.
In my journal on October 20, 2019, I wrote, “Empty boxes. Words seem like empty boxes.”
The next day I wrote, “I need a new voice in my head.”
Then, a few weeks later, the face droop.
I realized all of these phenomena that I thought were disparate symptoms might be part of a bigger, more terrible whole. The one pattern I didn’t want to see became too obvious to ignore. I began obsessing over the symptoms, documenting them in my journal, capturing pictures of my mildly drooping face. I was shaking my body like a Magic 8-ball, trying to guess what it all meant.
I had seen four different doctors before l admitted I needed to see a neurologist. By this time, simply putting laundry away took so much energy out of me that I had to lay down for a half an hour after I finished. I exercised less. Work was only a cognitive possibility for a few hours a day, if at all. This is what I told the neurologist, about all of this and my diagnosis of complex post-traumatic stress disorder, my history of small intestinal bacterial overgrowth, two previous concussions, and a recent oral surgery on the side of my face where the pain localized, all of which I thought might account for at least some of my symptoms.
“I’m not sure it’s a brain thing” I told the doctor before she brushed a piece of tissue paper against the left side of my neck.
“Can you feel that?”
She brushed the right side. “Can you feel that?”
My eyes widened. “Not as well as on the left.”
Along my right side, I had not noticed I was going numb.
Neurologists have to rule out the big things first, that’s what the doctor told me. She could not know what was causing my symptoms until she saw an MRI and made sure there was no tumor, no stroke, no thing altering my tissues of consciousness. I scheduled the test as quickly as possible and the follow up appointment soon after that. The intervening time I spent sitting in coffee shops, trying to work, but I was distracted. Every few minutes, I compulsively repeated the doctor’s assessment, dusting napkins against different parts of my skin. Could I feel my forearm? My thigh? My neck? My cheek? I Googled my symptoms late into the night. I read studies. I learned the medical name for an eye droop is ptosis. I ignored the news, was scarcely aware of the novel coronavirus spreading in China. Around this time, on February 11, 2020, I wrote in my journal, “It’s amazing how absurdity dissolves in context.”
It was obvious the doctor had not reviewed my scans before my appointment. I watched her fingers move over her laptop’s trackpad and open the document containing my MRI. She began reading it and sat silent for a long, heavy time.
I studied her as she studied my brain. She wore Valentino heels with pointed gold studs lining the straps. Her brittle black hair hovered just above the shoulders of her white coat, and her finger scrolled up and down on the mouse again and again and again. I tried to find a hint of my fate in her eyes, but they were dark and focused. My chest tightened; each passing second felt more severe than the last.
“Is it cancer?” I blurted out, tears already in my eyes. My mother had died of pancreatic cancer two and a half years before, during my junior year at Tulane. Some of the worst days of her final year were the days we got back scan results. All of our family’s energy was spent bracing against the possibility of what lay in the folder on the doctor’s desk.
“No,” she said, unemotionally.
“Is it going to kill me?”
“No.” Her finger kept scrolling, up and down, up and down.
“Will it leave me disabled?”
My head felt full of water. I began to cry.
I grabbed a tissue and tried to pull myself together.
“I’ve been trying to find the fourth spot. The radiologist said there’s four spots on your brain.”
The incessant movement of her finger had been her moving in and out of the black and white impression of my brain, up and down its columns, trying to locate a spot of suspected demyelination.
My lips trembled.
“I can’t help you,” she said. “You need to see a multiple sclerosis specialist.”
I was too upset to drive home from the appointment. My friend Diane—god bless her and her funky jewelry and all the patience she saved for me that day—drove me the forty-five minutes home as I cried on the phone with my father. That was how I spent much of the night, updating family and friends whom I had told about my MRI, not expecting the test result to be positive. My face was drooping slightly, I had told them before the appointment, but this scan is a formality. The last friend, Katie, hung up around midnight. We had spent our conversation on the phone Googling prognoses together, her in Dallas, I in New Orleans. We read that about half of those diagnosed with MS eventually require some kind of mobility aid, like a cane or wheelchair. One third functionally lose the ability to walk. Over the course of their life, all experience their symptoms intensifying.
After we said goodbye, I was desperate for some kind of hope, not hedged bets and well, we don’t know what will happen yet, but the kind that represented a version of reality to aspire to. I began Googling celebrities who had MS, my eyes trained on my phone screen as if they were hunting. My fingers sped past pictures of faces. Most were minor celebrities who had been poached from the limelight, often unable to summon the energy to continue in the public eye. Then, my thumb hovered over the picture of a thin woman with short hair and a familiar, angular face: Joan Didion—the pioneer of New Journalism, the National Book Award winning chronicler of politics and grief, one of my literary heroes—had been diagnosed with MS.
My mind began to race. Had she ever written about it? Yes, a search revealed. Once. Nestled at the end of the eponymous essay of her famous collection, The White Album, was the admission of her diagnosis. I had read the essay before in class, but no one mentioned Didion’s diagnosis during the discussion and, without the context given by the spots in my brain, its significance was lost on me. At 1 a.m., I ordered the book, a book that would become a bible for losing my mind.
Our bodies are not machines, but they are electric. It is light, electrons, these waves of force, passing over and through our bodies, that move us, inspire us, and sustain us, that bring us to life. When we animate our devices—light bulbs, refrigerators, phones, and the like—with electricity, we quite literally lend them our life force, cast out our most intimate of energies in the hopes of making something that, too, can act in this world. Like our devices, we have circuitry through which electricity flows. We call them nerves. It is here, on our neurons, that Multiple Sclerosis acts.
MS is a degenerative brain disorder, though it degenerates brains in different ways and to different degrees. This degeneration happens by the body’s own chemical hand: MS is an autoimmune disorder, a class of disorders in which something causes the body’s immune system to attack its own tissue. There’s lots of debate over what this something is. Some will point to genetics, others to toxins in the environment, infection, a history of concussions, or some combination of them all. As with most things, we don’t know the truth, but we are certain that something categorizable is happening and we can measure its consequences.
MS damages the neuron’s myelin sheath, a wrapping of fat around the middle of a neuron that is commonly compared to insulation around a wire. Insulation protects a wire’s signal and helps its communication to travel safely and clearly. When that insulation is damaged, the wire’s metal is exposed, its signal is put at risk, and the whole mechanism may become dangerous to the touch. Our nerves work similarly (and with more complexity). When our myelin sheath is damaged, our neurological signals are liable to become slow, scrambled, and dangerous.
In Multiple Sclerosis, the myelin sheath “becomes inflamed and hardens into scar tissue, thereby blocking the passage of neural impulses,” Didion writes in “The White Album.” This can cause a range of neurological symptoms: balance can become worse and walking can become harder; pain, numbness and tingling can appear at varying intensities throughout the body; muscles can spasm; the bladder and bowels can become dysfunctional; people may become dizzy. Of course, there’s fatigue, as well as visual impairment, which is part of what prompts Didion’s MS diagnosis. What scared me the most, though, was the cognitive impairment. Attention and memory might be weaker, processing all the world’s sensory input might become strained, words might become harder to find.
Didion’s suspicion of stories arose during a period, from 1966 to 1971, in which she felt life had gone off-script. It was not that her life appeared to be going badly—she was writing, had recently gotten married, and, in 1968, was named a Los Angeles Times “Woman of the Year”—but that the events in her life began to feel deflated, like they lacked substance. She could no longer hear the musical score telling her how to feel about each of life’s happenings, linking one thing to the next. As she reported on some of the most significant topics of the 1960s—The Doors, The Black Panthers, second-wave feminism, each of which she recounts in The White Album—she struggles to craft an internal narrative connecting all that she saw. “I was meant to know the plot, but all I knew was what I saw: flash pictures in variable sequence… not a movie but a cutting-room experience,” Didion writes. “I wanted still to believe in the narrative and in the narrative’s intelligibility, but to know that one could change the sense with every cut was to begin to perceive the experience as rather more electrical than ethical.”
As I read these lines, my eyes lit up. I recognized in them a dishevelment that haunted my own mind. Was this a symptom of Didion’s MS?
I read the rest of “The White Album” in a rush of identification, scouting my experience in Didion’s words, trying, in some way, to read into her my future. Thus, I saw evidence of Multiple Sclerosis everywhere. I saw it in Didion’s syntax, not details asserted as concrete fact, but subjective I-statements, as if she, like me, did not trust the veracity of her perception. It seems, it seems, she writes as she visits Black Panther Eldridge Cleaver’s house. I remember, I remember, she writes as she describes her house on Franklin Avenue in Los Angeles or visiting Manson Family member Linda Kasabian in prison after she was charged with the murder of Sharon Tate and four others. I saw MS in her prose, prose that is largely empty of sweeping, summarizing gestures—I assumed those felt out of reach to Didion—but is full of what she could access: catalogs of particularities that struck her. “I remember watching a rabbit graze on the grass by the gate as Gary Fleischman [Kasabian’s lawyer] signed the prison register,” she writes. After she returned home from the prison, she continues, “I would have two drinks and make myself a hamburger and eat it ravenously.” For this sensibility, her attunement to the strangeness of the familiar (as one of my graduate school professors would say), Didion’s writing is heralded as beautiful, if not unemotional.
Most of all, I saw MS in Didion’s confusion. It’s not that Didion didn’t search for cohesion in her life; the essay is a result of her straining for it and finding no satisfaction. I felt myself in that strain—me, who felt so small and thrown about by inexplicable randomness. “During the years when I found it necessary to revise the circuitry of my mind,” she writes, referring to MS, “.… all connections were equally meaningful, and equally senseless.” She offers the following as an example:
I read this passage and ached.
Before you think I’d gone fully mad, lost my mind in trying to find myself, Didion did, to some measure, agree with me. When it comes to naming anything close to a source of the essay’s famous affect, its detachment, its million-dollar suspicion, a close reading of the essay reveals that Didion points to, not only society, not only herself, but that erraticness in her brain she calls MS. Upon her diagnosis she writes, “my body was offering a precise physiological equivalent to what had been going on in my mind.”
“The White Album” is more than a document of masterful journalistic writing, of history, of neurological dysfunction. It is also a lesson in parsing daily bewilderment, in wading through a mind’s jingle-jangle and recognizing that in it can be found something real and resonant. The key to this, as I surmised from Didion, is to stop writing:
Not all the time, but frequently and as a practice, stop trying to reduce life’s undulations to sentences, to deduce them, to control them. Pause. Remember, hope is not always the meaning of things. We speak much about thinking hard: muscular, forceful cognition intent on getting to the bottom of the problem, the end, the supposed right answer. We speak less, though, about thinking lightly, allowing thoughts and sensations to flutter easily and undirected in our bodies, to, for a moment, stop trying to tell ourselves a story. Of course, we need stories. I am someone who has found tremendous healing in therapy as I’ve teased out and reconsidered the narrative of my life. But, as Didion so adroitly conveys, the stories we tell ourselves are shifty, impressionable, changing as easily as the pupils dilate. Sometimes we need the story, but sometimes the story is not the point.
In 1972, before the invention of the MRI, Didion received an exclusionary diagnosis of MS, meaning it was a diagnosis of final resort, what remained after all other plausible options had been ruled out. The White Album was published in 1979. On May 1, 2020, not long after I had finished reading Didion’s landmark work, I logged onto an online portal at Ochsner Health for a virtual visit with a neurologist who specializes in Multiple Sclerosis. The portal did not work on my computer, so I met the doctor through the miniature screen of my phone, which I propped up on books on my father’s dining room table. He sat next me as I told the doctor my symptoms. She listened, said ok, and had me perform a series of tests.
“Walk away from me,” she said and she studied my stride as I went. “Ok, walk back.”
She held up one finger on the screen and said, “Touch my finger on the screen and then touch the tip of your nose,” and I did it as many times as she asked without issue.
“Google this picture.” She instructed me on what to type into my search bar. “Is that what your vision looks like?” I pulled up a picture that showed the exact patchiness I saw in my world.
“I will still need to see you in person, but I am almost positive that you don’t have MS.”
An in-person visit confirmed it: I do not have MS, but a headache, one the MS specialist thought was a migraine. A move to New York and another neurologist refined the diagnosis further: I have a post-concussive hemicrania continua. The name loosely translates to headache that happens on one side of your head and never truly stops—that is, unless treated with the right medication, then, my neurologist told me, Hemicrania Continua headaches typically subside. They’re rare, he said. As a post-concussive headache, they are nearly unheard of.
When I first heard that I don’t have MS, it was like the anxiety ran out a trap door in the back of my head. All of the energy I had once saved for research, for reading each bodily change like tea leaves, simply evaporated. The threat was subdued; I was no longer afraid of what was to come. All of that despair because of one minor car accident and one bump on the head that didn’t make anyone around me look twice. All of that fear, and the doctors have told me the “white matter abnormalities” on my MRI might mean nothing at all.
It goes without saying that nothing I recognized as MS in “The White Album” can be attributed to the disorder with a reasonable degree of confidence. And in reality, Didion and I don’t have much in common. I am from Texas, two hours inland from the nation’s overheated gulf coast, and I don’t feel at home in the ocean’s water. She was from sunny California and her favorite refuge was Hawaii’s shores. I have written many poems about lovers. She resisted sentimentality. I am a student, young, mostly anonymous; her life is complete and, for many, a northstar. Yet, there is a small patch of grass that we share, one I recently discovered while reading an interview Didion gave to WebMD in the mid-2000’s. Like me, Didion stopped experiencing MS-like symptoms—at least for a few decades. In the interview she said, “The symptoms subsided. I saw a neurologist regularly and never gave it a thought in between [appointments].” Yet, like me, her mind and body changed for a while, she told herself a story, and the world never appeared the same.
I am no longer convinced that sense is the goal, that the story must always be clutched. Obviously, there must be some narrative in place, albeit a flexible, accommodating one. Though my mind has largely returned to me, though I haven’t had a headache in months, I can still look around me and the world and find it to be equally meaningful and equally senseless. Just the other day, this crossed my mind:
Joan Didion’s daughter, Quintana, died on August 26, 2005, my tenth birthday. That same day Hurricane Katrina was raging in the gulf, about to devastate New Orleans, the tenth anniversary of which I would later chronicle as Print News Editor for The Hullabaloo, Tulane’s student newspaper. In a class at Tulane, I would first read “The White Album” in an advanced creative nonfiction class taught by New York writer Thomas Beller. Years later, in October of 2021, living in New York, I would pitch the piece you’re reading now and tell my editor, “I can’t turn in the essay until the week of December 20th. I’m too busy with school to do it sooner.” That week, Joan Didion died. Her numerous obituaries listed her cause of death as Parkinson’s Disease. She was 87.
On May 2, 2020, reflecting on The White Album, I wrote, “It is each generation’s journey to learn that things are not what they seem, not even close.”
You can donate to The National Multiple Sclerosis Society, an organization that works to publicize treatments and research for cures to MS, here. And if you’d like to help support research and treatments for Parkinson’s Disease, you can do so here.
More of artist Diane Appaix-Castro’s work can be viewed at dianeappaixcastro.com.