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Early one afternoon in April, I’m heading home from an appointment when my legs lock up; they abruptly grow so rigid that ambulation becomes impossible. While standing on the pavement, I phone my spouse. Fortunately, he’s telecommuting and arrives to assist. Supported by him, I’m barely able to drag myself the final two blocks.
A couple of hours later, in the emergency room at NewYork-Presbyterian, as I wait to consult with the on-duty neurologist, I observe a mother, perhaps in her fifties, hovering over her daughter, who is in her twenties and appears to share a kindred condition. It’s clear the mother is prosperous, and she pesters the nurses regarding the availability of her daughter’s private suite. Her sense of privilege is grating; nevertheless, I find myself admiring her dedication to her child.
The woman’s assertive presence transports me back almost twenty-eight years, to a week I spent at the same facility, receiving treatment for multiple sclerosis. My mother visited me once. She conveyed that my father had parked unlawfully, so they were unable to linger. Like the mother in the E.R., she was committed, but she was never able to cope with sickness or hardship. I’m grateful, at this moment, to have my youngest daughter, who is seventeen and exceedingly capable, by my side.
“It is perfectly true, as philosophers say, that life must be understood backward,” Kierkegaard perceptively recorded in his diary in 1843. “But they forget the other proposition, that it must be lived forward.”
Since my mobility diminished in April, however, it has occasionally seemed as if I, too, am regressing—conceivably because learning to ambulate is considered a paramount phase in a baby’s maturation. Concurrently, my health predicament has seemed utterly contemporary, particularly the political dimension. Much like a large segment of American voters in 2024 consciously chose an Administration bent on dismantling everything that has elevated the U.S. to global prominence, my immune response, amidst the M.S., has directed B and T cells to assail the myelin sheath surrounding nerve fibers in my central nervous system, thereby hindering my performance and provoking frailty and discomfort.
I am still grappling to comprehend it all.
•
The previous instance of my legs failing occurred a month before my twenty-eighth birthday. In those days, the system failure occurred in one day. Upon awakening one morning, I detected that a flurry of prickling sensations had, it seemed, supplanted a limb that had been vigorous the preceding day. When I attempted to place weight on my left leg, I sensed a lack of support. Soon, the numbness extended through the entire left flank of my body.
An MRI scan revealed a small lesion on my brain stem. After a spinal tap validated my neurologist’s hypothesis, I received a preliminary diagnosis of a clinically isolated syndrome, frequently the initial indication of M.S.
After a couple of months, my paralysis dissipated as mysteriously as it had manifested. Subsequent MRIs over the ensuing years exhibited no novel lesions on my brain or spine. Eventually, my neurologist discharged me, counseling me to “Go enjoy your life.” (Since disease-modifying treatments have been developed and neurologists have realized that clinically isolated episodes are almost always indicative of M.S., this advice is seldom offered anymore.)
I endeavored to do so. And, in due course, so many years elapsed without symptoms that my diagnosis felt like just another outlandish anecdote from my chaotic twenties.
M.S. had so completely evaporated from my awareness as a potential issue—or, more accurately, I had so skillfully repressed the recollection of it—that in late winter, when I began to experience a piercing ache traversing the rear of my left leg while in bed, my immediate impulse was to schedule a session with a sports-medicine physician.
When that physician’s MRI of my lumbar spine uncovered little of clinical importance, however—and then my leg began to grow weaker—it all appeared oddly unavoidable. Like Freud’s return of the repressed. Or possibly Dickens’s Ghost of Christmas Past.
By the moment I found myself marooned on a Brooklyn street, it felt as though the apparition had resurfaced to underscore not my stinginess but my folly in ever presuming I was well.
•
For decades, I.V. steroid infusions have remained the customary therapy for M.S. exacerbations. The aim is to accelerate recovery from symptoms.
While I am subjected to the first of three infusions, the woman in the chair adjacent to me orders (and obtains and devours) three bags of sustenance via Grubhub. The woman to my right, a wheelchair user, has dozed off and is snoring. Eager to detach myself from the surrounding pain and despondency, as though I were simply an intruder rather than an active participant, I insert my earbuds and select the new album by Lucy Dacus.
A few nights prior, I had hobbled through Radio City Music Hall with my daughter to attend Dacus’s performance. We had secured tickets well in advance, and I was reluctant to disappoint her. However, apprehension had become a persistent companion whenever I embarked on an expedition that wasn’t close to home. Resembling a swimmer who has swum too far, I feared I would lack the energy to reach the shore and would succumb to panic. Foremost, I dreaded the panic itself, to the point where it became difficult to discern between central-nervous-system malfunction and a cortisol response. (Ultimately, I navigated the concert without incident, but, jammed among hundreds of attendees on a subway platform afterward, I doubted I would survive the journey home.)
Upon completing the infusion, a remarkably cheerful nurse warns me playfully that I might be bounding around my residence at 4 a.m., compulsively organizing my closet. En route home, I input “intravenous steroid side effects” into Google—and discover that the list encompasses headache, giddiness, personality changes, bulging eyes, and “inappropriate happiness.” I start to wonder if it’s ever unsuitable to be content. Shouldn’t every chance for such be embraced, especially in times like these?
Conversely, I ponder whether it is appropriate for me to be unhappy. Do I even possess that entitlement? I did, after all, survive more than twenty-seven years without any flare-ups. From a specific perspective, I am among the privileged.
And, nevertheless, in recent months, I have felt exceedingly unfortunate. Why me? I constantly reflect.
On the one hand, I recognize that I have deliberately shaped a life that permits me to devote the majority of my waking hours at home, with my computer and books. On the other hand, even predating the emergence of symptoms earlier this year, I had been feeling embarrassed by how limited and—both financially and artistically—unproductive my existence had become. My unexpected impairment manifests as my long-standing anxiety that, while others proceed with their travels and triumphs, I am, as always, Stuck.
•
In my mid-twenties, I had a boyfriend who routinely ordered for me when dining out. “She’ll have the roast chicken,” he would instruct the server. I understood that this was problematic. Yet, I was unable to protest. In those days, the entire undertaking of adult existence seemed beyond my skillset.
A facet of me also considered that I was too occupied writing significant literary masterpieces to concern myself with the trivialities of everyday existence, such as determining what to consume for dinner.
Even though I’ve evolved to be considerably more self-reliant in the intervening years, my husband still accuses me of “learned helplessness.” He isn’t altogether mistaken. I have yet to master the operation of our smart television. Although I possess a current New York State driver’s license, I refrain from driving. The mere sight of IKEA assembly guides sends my eyes into a daze, not to mention at-home COVID testing kits.
Since becoming involuntarily reliant on others during this recurrence, I’ve observed that dependency has forfeited its allure.
•
A few days following my initial steroid infusion, I discover I am able to elevate my left leg from the ground once more. However, thereafter, advancement seems to halt, then reverse itself. By mid-May, I can barely reach the end of my block.
Around the same time, I receive an alert from my iPhone, notifying me that my daily step total has plummeted precipitously. On several days in the past weeks, the registered count was actually zero. I have never received such a notification from my fitness app, and it leaves me surprised and defensive. As if my sudden shift to inactivity were a result of laziness, not frailty. “It’s not my fault!” I wish to declare, but I would only be addressing tracking software.
Impairment represents only one component of the M.S. spectrum of suffering. I have also been contending with other common symptoms, including tingling, numbness, and spasticity. It is challenging to articulate the latter sensation, but to attempt to ambulate amidst spasticity feels as though bags of topsoil have been affixed to the backs of your knees. Persistent neuropathic pain, though, is the most unwelcome of all the invaders. At times, it descends upon the region above my left ankle. Moments later, similar to a fly eluding a swat, it will resurface on the exterior of my thigh—or switch flanks and assail my right toes or knee.
Seeking alleviation, I secure an appointment with an acupuncturist.
With discomfiting abruptness, the acupuncturist inserts needles into my head and left leg, exits the room—and appears to forget about me entirely. After forty-five minutes, despite the piped-in lute melodies, I grow abruptly anxious. “Hello?” I call out. And then, “Hello?!”
No one responds. I attempt again, more loudly this time, with my panic intensifying.
Eventually, the acupuncturist reënters the room and offers an apology. “I should have attended to you first. I lost track of time.”
To be impartial, she is not alone. Lately, I seem to have mislaid track of everything—sometimes even the current day of the week. My shifting and ever-evolving symptoms incessantly divert my focus back to my body, making it difficult to fixate on anything else.
Or, at least, anything apart from the latest dreadful headline.
•
In between episodes of doomscrolling, I have been posing questions to ChatGPT regarding my ailment, then experiencing a vague sense of unease for having done so. I worry the activity promotes obsessive rumination. It also feels akin to cheating. After all, medical professionals spend years accumulating specialized knowledge. They examine us personally. Their conclusions are probably more trustworthy than A.I.’s “educated” approximations.
Yet, medical experts are busy, particularly those who are employed at research institutions and are dependent on insurance reimbursements. And, specifically in unclear instances such as mine, A.I. tempts with both its constant accessibility and the prospect, however delusive, of unearthing hidden causes and mechanisms that ordinary individuals might overlook.
It extends beyond that, even. To be human is to be wanting, and to pursue validation and comfort. Between appointments with physicians, it can seem as though the chatbot, programmed to introduce its conclusions with expressions of empathy and concern, is the solitary entity who cares. “That is a very difficult and frustrating situation, and you’re asking a completely valid question. Here’s a breakdown,” it responds to one of my inquiries.
I also surmise that I am asking “Dr. Chat,” as my friend E. refers to it, to fulfill the same role that Ouija boards and Magic 8 Balls did during my twentieth-century youth—that is, to foretell the future. Essentially, all my questions are variations on the same question: Am I going to recuperate?
Naturally, no one is capable of predicting the future, not even A.I. But a part of me desires that the bot would forgo the artificial humanity and the bullet points, and—resembling the analog, mid-century Magic 8 Ball—simply reply with a blue-lettered, triangle-framed “OUTLOOK GOOD.”
•
Here is another element that defines us as human: conceit.
In actuality, I used to be quite conceited about my legs. (At one time, my long legs seemed like compensation for my small bust.) I was particularly delighted by them during my initial years in New York City. After reading Jean Stein’s oral biography of the Warhol Factory’s starlet Edie Sedgwick, “Edie: American Girl,” I became enamored with her radiant, albeit tragic, existence—and, as an homage, began pairing vintage A-line minidresses with black hosiery.
Presently, I would prefer to admire the countenances and physiques of my daughters than to dwell upon my own increasingly pallid reflection in the looking glass. But conceit hasn’t entirely forsaken me. I haven’t ceased worrying about my perceived aesthetic shortcomings, and every so often I am disappointed anew to discover that strangers no longer glance at me twice.
At the same time, inconspicuousness has arrived as a relief, insofar as my conceit has always been paired with self-consciousness and self-criticism.
Nonetheless, when a new neurologist characterizes my brain as “beautiful” while examining my MRI scans, I confess to feeling pathetically flattered. She appears especially intrigued by a string of wavy, inchworm-like lines, which, I am told, represent my blood vessels.
At my stage of life, one welcomes praise wherever one finds it.
•
But, even if my brain remains beautiful, I am unable to suppress the notion that it, like my legs, has betrayed me. More broadly, I have never been so cognizant of the inadequacy of the twisted constraints within which we remain confined for life. Why didn’t evolution generate a more reliable rendition of the human body, less susceptible to dysfunction and deterioration? I ask myself.
It is a mind-bending concept that this very sentence you are reading, and perhaps even my willingness to disseminate personal medical details, may, in some minor fashion, be impacted by demyelination in my frontal lobe, a region theorized to influence planning, decision-making, and memory. (Recent MRIs of my brain revealed two “inactive” lesions in my frontal periventricular white matter, validating my M.S. diagnosis.)
During one medical consultation, a physician asks whether I have been encountering any cognitive difficulties. I endeavor to recall whether I have, and am unable to summon any instances. But what if my memory itself is impaired? I later fret.
•
Still, there have been advantageous aspects to the resurgence of my disease: I currently possess an infallible justification for not attending anyone’s readings, screenings, concerts, parties, picnics, benefits, and religious observances, should I lack the inclination to participate. The same applies to answering anyone’s emails or texts in a punctual manner. For the time being, at least, no one can accuse me of being self-absorbed and neglectful, either. (For the majority of my life, I have lived in terror of provoking the anger of others.)
Furthermore, I have nearly vanquished my claustrophobia. Or, at least, the iteration that, twenty-seven years prior, rendered me unable to enter an MRI scanner tube without an intravenous sedative. I have perfected my routine these days: five milligrams of diazepam thirty minutes prior; eye mask thirty seconds prior (no peeking permitted).
During the countless MRIs I have undergone this year—the most recent one persisted for a delirium-inducing hour and forty-five minutes—I have depressed the panic button on only one occasion. Becoming abruptly overheated, I registered the presence of the cage encircling my face. Fortunately, the technician reacted quickly, sliding me out of the crypt, removing my blanket, and assuring me that I was “doing great,” before sliding me back in.
As if lying inert while gradient coils produce an otherworldly racket that best mimics a fusion of jackhammers and Philip Glass were a commendable skill. (Perhaps it is?)
Another upside to my affliction: I have been moved and astonished to discover once more the exceptional quality of my friends and family. They are continually writing to inquire how I’m progressing, coming over for visits, bringing sustenance and beverages, picking me up in their vehicles, and taking me for excursions.
In recognition of my semi-invalid state, I have also unlocked the inaugural volume of Lydia Davis’s translation of Proust’s “In Search of Lost Time.” So far, I concede to wishing that our feeble young protagonist would rouse himself somewhat. But I have only read fifty pages.
Finally, the reëmergence of M.S. has provided a welcome reprieve from the compulsion to excel—a compulsion that has plagued me since childhood and is invariably accompanied by a sense of failure at not having achieved more.
At least for the moment, my primary objective is simply to improve.
Though, as my friend A. recently remarked, I now have an opportunity to pen the world’s first piece of autoimmune autofiction. Or perhaps it should simply be termed autoimmunefiction? She even has a potential title for me: “Life Lesions.”
It is such a relief to laugh. . .
•
Even so, my mood plummets at least once each day.
One evening, I inquire of E. whether she considers my life to be over. “Absolutely not,” she replies. I am still capable of reading, writing, and hosting dinner gatherings. Furthermore, I have a caring husband. “Many men would leave,” she adds.
“Really?” I respond, somehow taken aback by the assertion.
“There are so many jerks out there,” E. insists. “But he is committed to caring for you.”
Later, I reiterate the “jerks” sentiment to my husband, and we share a laugh about that as well.
But I cannot quell the thought that a part of him must, in reality, desire to leave me. For several days, I persistently voice this notion, until he eventually grows irritated and instructs me to never utter it again.
As I contemplate my life, it seems almost coincidental that I ended up marrying such a kind and devoted individual; he doesn’t even place my order for me at restaurants.
Moreover, when one is unwell, it becomes all the more apparent that affection is paramount, and the remainder is primarily noise.
•
In that no “active” lesions were detected on any of my MRIs, my neurologist now believes that I might have endured not a classic M.S. relapse but a reactivation (or “recrudescence”) of quarter-century-old scar tissue in my brain stem, possibly triggered by an infection, despite the original lesion now being too diminutive to register on standard imaging. She identifies no evidence of progressive disease, and continues to anticipate further betterment.
Another neurologist, whom I consulted for an additional opinion, believes, however, that I am in the early phase of secondary progressive M.S., in which novel lesions are not consistently a feature.
Half a year later, I have observed substantial advancements in my gait. At the beginning of summer, for the first occasion in months, my daily step count exceeded a mile. More recently, I registered a three-mile day. “I can tell you’re feeling better, because you’ve started complaining about me again,” my husband remarks. On certain days, I feel almost like my former self; on others, less so. The discomfort, prickling, and spasticity have also lessened, although they continue to come and go according to an unpredictable cadence of their own devising.
Within M.S. more broadly, ambiguities abound. Not only are relapses unpredictable, but scientists have yet to explicate the gradual and insidious degeneration that often transpires even without new lesions. In light of the disease’s extensive spectrum of trajectories and manifestations—from moderate and manageable to severely disabling—some now regard it as a cluster of diseases, rather than a single entity. With M.S., the only certainty is uncertainty.
Perhaps that’s what renders my diagnosis so psychologically demanding. It is challenging to grieve when one cannot even be certain about what one has forfeited.
•
Despite all that has transpired, I strive to remain optimistic—even when I feel despondent and, resembling Proust’s narrator, wish to crawl back beneath the covers and never rise again.
An electromyography examination I underwent in May—imagine being shocked in the legs by an electrified fence for thirty uninterrupted minutes—validated that I am not afflicted with A.L.S. During low moments, I remind myself of this truth.
And, in June, I initiated a relatively new disease-modifying therapy that utilizes monoclonal antibodies to diminish troublesome B cells in my system. Ideally, this will preclude fresh inflammation, and—with apologies to my insurer—it only costs nine grand per month. Clearly marking me as a prospective source of revenue, agents from the pharmaceutical corporation that manufactures the medication have been emailing, texting, phoning (“Hey there! It’s Karen from Kesimpta . . .”), and dispatching me brochures and paraphernalia: a “wellness journal” complete with decorative stickers, an “on-the-go cooler” for storing my injections. “YOU GOT THIS!” reads the flap of one envelope.
I feel inclined to reply, “I REALLY DON’T!”
But, due to the ample precipitation last spring, the hydrangeas in my garden flourished over the summer. (Indeed, who amidst our current dystopia hasn’t?) And the blossoms were not only magnificent but served as a reminder of the potential for renewal. To that end, I have been collaborating with a physical therapist to rebuild my strength and endurance. Swimming also aids, I’ve found—specifically in the sea, where my limbs experience a blissful weightlessness akin to the silvery diminutive fish flitting about me.
For me, as for the nation, engulfed in its own autoimmune-like malady, it appears, the optimal remedy to being brought low is to stand tall. I eagerly anticipate the day when I am well enough to participate in street protests again. That, too, sustains me. ♦
Sourse: newyorker.com
