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Early one afternoon in April, I was heading back from an errand when my legs locked; abruptly, they grew so rigid that walking became unfeasible. Standing there on the pavement, I phoned my spouse. Thankfully, he was teleworking and came to assist me. Gripping onto him, I managed to hobble the last couple of blocks.
A few hours later, in the E.R. at NewYork-Presbyterian, while I was awaiting assessment by the attending neurologist, I observed a middle-aged woman hovering over her daughter in her early twenties, who appeared to be experiencing a comparable condition. The woman clearly possessed affluence, and she hectored the nurses about when her daughter’s private room would be available. Her air of entitlement was irritating; all the same, I was struck by her dedication to her offspring.
Her dominating presence transported me back nearly twenty-eight years, to a week I spent at this very institution undergoing treatment for multiple sclerosis. My mother visited me once. She stated that my father had parked illegally, so they were unable to remain for long. Similar to the woman in the E.R., she was committed, but she was never able to cope with sickness or hardship. I am grateful, on this occasion, to have my youngest child, who is seventeen and impressively capable, at my side.
“It is quite accurate, as scholars articulate, that existence must be comprehended retroactively,” Kierkegaard thoughtfully noted in his diary, in 1843. “However, they disregard the corollary, that it must be experienced prospectively.”
Since my ambulation became affected that April, however, it has sometimes seemed as though I were existing in reverse, as well—conceivably because mastering walking is considered one of the most pivotal developmental landmarks in an infant’s life. In tandem, my health predicament has appeared completely of the moment, particularly the political facet of it. Much like a majority of American voters in 2024 deliberately chose an Administration bent on undermining everything that has rendered the U.S. the object of global admiration, my immune response, during this flare-up of M.S., has directed B and T cells to assault the myelin coating that safeguards the nerve pathways of my central nervous system, obstructing my function and instigating weakness and discomfort.
I am still endeavoring to decipher it all.
•
The prior instance of my legs failing me happened a month prior to my twenty-eighth birthday. At that time, systemic breakdown transpired in the space of a single day. Upon waking one morning, I discovered that a flurry of prickling sensations had seemingly supplanted a limb that had been firm the previous day. When I attempted to place weight on my left leg, it felt as if there was nothing to prop me up. Before long, the sensation of insensitivity spread across the entire left portion of my physique.
An MRI revealed a small lesion on my brain stem. Following a spinal tap confirming my neurologist’s misgivings, I was tentatively diagnosed with a clinically isolated syndrome, which frequently represents the initial manifestation of M.S.
Two months subsequently, my paralysis dissipated just as mysteriously as it had surfaced. Follow-up MRIs throughout the ensuing years revealed no new lesions on my brain or spinal column. Eventually, my neurologist discharged me from his care with the pronouncement “Go and enjoy your life.” (Given the emergence of disease-modifying therapies and the current understanding among neurologists that clinically isolated syndromes are nearly always indicative of M.S., this counsel is no longer provided.)
I made a concerted effort. And, ultimately, such a multitude of symptom-free years elapsed that my diagnosis commenced to feel like merely another peculiar anecdote from my tumultuous twenties.
M.S. had receded so utterly from my consciousness as an issue—or, truthfully, I had so successfully suppressed the recollection of it—that late last winter, when I began experiencing a piercing pain ascending the posterior of my left leg while lying in bed, my initial inclination was to arrange a consultation with a sports physician.
When that physician’s MRI of my lumbar spine demonstrated little of clinical significance, however—and subsequently my leg started to weaken—it all appeared strangely unavoidable. Similar to Freud’s return of the repressed. Or perhaps Dickens’s Ghost of Christmas Past.
By the time I discovered myself marooned on a Brooklyn street, it seemed as if the specter had resurfaced to emphasize not my avarice but my imprudence for ever presuming that I was well.
•
For several decades, I.V. steroid infusions have been the conventional approach to treating M.S. relapses. These are intended to accelerate one’s recuperation from symptoms.
While I am undergoing the first of three infusions, the woman seated to my left procures (and receives and consumes) three bags of sustenance via Grubhub. The woman to my right, who is in a wheelchair, has dozed off and is snoring. Anxious to distance myself from the distress and wretchedness surrounding me, as though I were merely an onlooker rather than an active participant, I insert my earbuds and select the latest record by Lucy Dacus.
A few nights prior, I had hobbled through Radio City Music Hall alongside my daughter, to attend Dacus’s performance. We had purchased tickets months in advance, and I was reluctant to disappoint her. However, trepidation had evolved into a dependable companion whenever I initiated an excursion that was not proximate to my residence. Like a swimmer who has ventured too far out, I was fearful that I would lack the fortitude to return to shore and would succumb to panic. Predominantly, I dreaded the panic itself, to the degree that it became challenging to distinguish between central-nervous-system derangement and cortisol response. (As it transpired, I navigated the concert without difficulty, but, confined by hundreds of attendees on a subway platform subsequently, I doubted I would endure the journey home.)
Upon completion of the infusion, a remarkably cheerful nurse cautions me with a chuckle that I might be buzzing about my dwelling at 4 a.m., frantically tidying out my closet. En route home, I type “intravenous steroid side effects” into Google—and ascertain that the compilation includes headache, vertigo, personality alterations, protruding eyes, and “inappropriate happiness.” I find myself contemplating whether it is ever unsuitable to be joyous. Shouldn’t all prospects for such be welcomed, particularly at a period such as this?
Conversely, I question whether it is appropriate for me to be despondent. Do I even possess that prerogative? After all, I persevered for more than twenty-seven years without any flare-ups. From a particular standpoint, I am among the privileged few.
And, yet, in recent months, I have experienced profound misfortune. Why me? I continually ponder.
On the one hand, I am mindful of having deliberately constructed a life that permits me to dedicate the majority of my waking hours at home, with my laptop and literature. On the other hand, even prior to the emergence of symptoms earlier this year, I had been feeling humiliated by how confined and—in both economic and literary senses—unproductive my existence had grown. My sudden incapacitation feels like an embodiment of my longstanding apprehension that, while others advance with their explorations and triumphs, I am, as usual, Going Nowhere.
•
In my mid-twenties, I had a boyfriend who was accustomed to ordering for me in restaurants. “She’ll have the roast chicken,” he would announce to the waiter. I acknowledged that this was problematic. Yet, somehow, I was unable to bring myself to object. At that time, the whole affair of adult living seemed beyond my capabilities.
Another part of me held the conviction that I was too preoccupied writing significant works of prose to trouble myself with the commonplace particulars of daily life, such as what to consume for dinner.
Although I’ve evolved into a considerably more self-reliant individual in the decades since, my husband still accuses me of “learned helplessness.” He isn’t entirely incorrect. I haven’t yet mastered the utilization of our smart TV. While I maintain a current New York State license, I never operate a vehicle. The mere glimpse of IKEA assembly manuals causes my eyes to cloud over, to say nothing of home COVID tests.
Since becoming involuntarily dependent on others during this recurrence, however, I’ve observed that reliance has shed its appeal.
•
A couple of days subsequent to my initial steroid infusion, I discover that I can elevate my left leg from the floor once more. But, thereafter, advancement seems to stagnate, then regress. By mid-May, I can barely traverse to the conclusion of my block.
Around that same period, I receive an alert from my iPhone, notifying me that my daily step tally has plummeted drastically. On various days in recent weeks, the documented count was essentially zero. I have never been sent a communication from my fitness app previously, and it leaves me disconcerted and defensive. As though my abrupt descent into a sedentary existence were the consequence of idleness, not ailment. “It’s not my fault!” I feel inclined to argue, but I would simply be responding to tracking software.
Incapacitation is merely one facet of the M.S. assortment of miseries. I have also been afflicted by other frequent symptoms, encompassing tingling, numbness, and spasticity. It is challenging to depict the latter sensation, but to endeavor to walk in the throes of spasticity is to perceive as though sacks of soil had been bound to the rear of your knees. Chronic neuropathic pain, however, is the most unwelcome of all the intruders. At times, it befalls the area above my left ankle. Minutes later, similar to a fly that evades swatting, it will resurface on the exterior of my thigh—or shift sides and assail my right toes or knee.
In pursuit of alleviation, I schedule an appointment with an acupuncturist.
With disconcerting curtness, the acupuncturist inserts needles into my head and left leg, exits the room—and appears to dismiss all recollection of me. Following forty-five minutes, despite the pre-recorded lute melody, I become abruptly anxious. “Hello?” I shout. And subsequently, “Hello?!”
No one responds. I attempt again, louder this time, and with panic intensifying.
Finally, the acupuncturist returns to the room and offers an apology. “I should have attended to you sooner. I lost all sense of time.”
In fairness, she isn’t the only one. As of late, I appear to have lost track of everything—occasionally even what day of the week it is. My fluctuating and ever-shifting symptoms persist in directing my focus back to my corporeal form, rendering it arduous to concentrate on anything else.
Or, at least, anything excluding the latest appalling headline.
•
In between episodes of obsessively consuming dismal news, I have been posing inquiries to ChatGPT pertaining to my affliction, then feeling somewhat uneasy about having engaged in such. I am fearful that the practice exacerbates obsessive thoughts on my part. It also registers as akin to cheating. After all, members of the medical profession dedicate years acquiring expertise. They examine us face to face. Their conclusions are likely to be far more dependable than A.I.’s “educated” approximations.
But doctors are occupied individuals, particularly those who are employed at research institutions and are dependent on insurance payments. And, specifically in ambiguous instances such as my own, A.I. allures with both its unending availability and the assurance, however illusory, of unearthing the hidden origins and mechanisms that ordinary humans might have overlooked.
It extends even beyond that. To be human is to be vulnerable, and to seek validation and comfort. Between medical check-ups, it can feel as though the chatbot, which is programmed to preface its assessments with expressions of compassion and solicitude, is the sole entity that cares. “That is a profoundly challenging and vexing predicament, and you’re posing a perfectly reasonable question. Here’s a breakdown,” it replies to one of my inquiries.
I also harbor the suspicion that I am imploring “Dr. Chat,” as my friend E. terms it, to fulfill the identical role that, during my twentieth-century youth, Ouija boards and Magic 8 Balls did—namely, to forecast the future. Essentially, all my questions are variants on the same inquiry: Am I destined to recover?
Of course, no one can foretell what lies ahead, not even A.I. Yet some element of me yearns for the bot to forego the simulated humanity and the bullet points, and—resembling the analog, mid-century Magic 8 Ball—simply respond with a blue-lettered, triangle-encased “OUTLOOK GOOD.”
•
Here is another element that defines our humanity: conceit.
Candidly, I used to harbor considerable vanity regarding my legs. (Formerly, my elongated legs appeared to compensate for my diminutive chest.) I was especially satisfied with them during my nascent years in New York City. Having perused Jean Stein’s oral biography of the Warhol Factory luminary Edie Sedgwick, “Edie: American Girl,” I became mesmerized by her radiant, albeit tragic, existence—and, in tribute, began pairing vintage A-line minidresses with opaque black tights.
At present, I would sooner admire the visages and physiques of my daughters than contemplate my own increasingly pallid reflection in the mirror. But vanity hasn’t deserted me altogether. I haven’t ceased fixating on my perceived aesthetic shortcomings, and periodically I am crestfallen to discover anew that strangers no longer glance at me a second time.
Concurrently, anonymity has arrived as a comfort, insofar as my vanity perpetually coexisted with self-consciousness and self-recrimination.
Nonetheless, when a new neurologist characterizes my brain as “beautiful” while inspecting my MRI visuals, I concede to feeling pathetically flattered. She seems particularly captivated by a sequence of meandering, inchworm-esque lines, which, I am informed, symbolize my blood vessels.
At my stage of life, one accepts compliments wherever one encounters them.
•
But, even if my brain persists in being beautiful, I cannot resist the notion that it, like my legs, has deceived me. More broadly, I have never been so conscious of the inadequacy of the contorted straitjackets in which we remain confined for life. Why didn’t evolution yield a more reliable iteration of the human anatomy, less susceptible to malfunction and deterioration? I muse.
It is a mind-bending consideration that this very statement you are presently reading, and perhaps even my proclivity to divulge personal medical details, may, in some minor manner, be shaped by demyelination in my frontal lobe, an area believed to influence planning, decision-making, and recollection. (Recent MRIs of my brain unveiled two “inactive” lesions in my frontal periventricular white matter, substantiating my M.S. diagnosis.)
During one medical appointment, a doctor inquires whether I have been undergoing any cognitive issues. I attempt to recollect if I have, and am unable to conjure any instances. But what if my memory itself is impaired? I later fret.
•
Still, there have been advantages to the resurgence of my ailment: I presently possess an irrefutable pretext not to manifest at anyone’s readings, screenings, concerts, parties, picnics, benefits, and religious observances, should I lack the inclination to attend. The identical holds true for responding to anyone’s e-mails or texts in a prompt manner. For the interim at least, no one can incriminate me of being self-absorbed and inattentive, either. (For the preponderance of my existence, I have resided in apprehension of people being displeased with me.)
Furthermore, I have nearly subdued my claustrophobia. Or, at least, the manifestation that, twenty-seven years prior, rendered me incapable of entering an MRI scanner tube without an intravenous sedative. I have my procedure perfected these days: five milligrams of diazepam thirty minutes in advance; eye covering thirty seconds prior (no peeking permitted).
During the countless MRIs that I have undergone this year—the most recent one stretched on for a delirium-inducing hour and forty-five minutes—I have pressed the panic button only once. Suddenly overheated, I became cognizant of the cage over my countenance. Thankfully, the technician responded swiftly, sliding me out of the crypt, eliminating my blanket, and assuring me that I was “doing splendidly,” before sliding me back in.
As though reclining there playing lifeless while gradient coils conjure an unearthly uproar that most closely simulates a fusion of jackhammers and Philip Glass were a commendable aptitude. (Perhaps it is?)
Another perk to my indisposition: I have been profoundly touched and astonished to rediscover what exceptional companions and kin I possess. They are consistently writing to inquire as to my well-being, arriving for visits, delivering provisions and beverages, collecting me in their vehicles, and taking me for outings.
In homage to my semi-invalid condition, I have also initiated the opening volume of Lydia Davis’s translation of Proust’s “In Search of Lost Time.” Thus far, I concede to yearning for our feeble young protagonist to brace up somewhat. But I am merely fifty pages into the text.
Lastly, the return of M.S. has furnished a welcome respite from the compulsion to attain—a compulsion that has dogged me since my youth and which is inevitably accompanied by a sensation of deficiency at not having accomplished more.
At least for the moment, my primary ambition is simply to recuperate.
Though, as my friend A. recently emphasized, I now possess the occasion to compose the world’s inaugural work of autoimmune autofiction. Or should it simply be designated autoimmunefiction? She even has a title conceived for me: “Life Lesions.”
It feels supremely gratifying to chuckle. . .
•
Even so, my disposition nosedives at least once daily.
One evening, I inquire of E. whether she believes my existence is concluded. “Absolutely not,” she retorts. I am still capable of perusing, writing, and hosting dinner gatherings. Moreover, I possess a supportive spouse. “Numerous men would depart,” she appends.
“Really?” I respond, somehow taken aback by the assertion.
“There are so many jerks out there,” E. insists. “But he desires to tend to you.”
Later, I reiterate the “jerks” phrase to my husband, and we derive amusement from that, as well.
But I am unable to cease contemplating that some aspect of him must genuinely desire to abandon me. For several days, I persevere in articulating this notion aloud, until he finally becomes exasperated and instructs me to never reiterate it.
As I contemplate my existence, it appears somewhat serendipitous that I ultimately wedded such an upright and devoted individual; he does not even select my meals for me in restaurants.
Furthermore, when one is ailing, it becomes even more salient that what holds the greatest importance is affection, and the remainder is largely din.
•
Insofar as no “active” lesions were detected on any of my MRIs, my neurologist now speculates 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 precipitated by an infection, despite the original lesion now being too minuscule to manifest on standard imaging. She discerns no indication of progressive ailment, and proceeds to anticipate further amelioration.
Another neurologist, whom I consulted for a secondary viewpoint, surmises, however, that I am in the nascent phase of secondary progressive M.S., in which new lesions are not consistently a hallmark.
Half a year subsequently, I have witnessed substantial enhancements in my gait. At the commencement of summer, for the first occasion in months, my daily step tally surpassed a mile. More recently, I registered a three-mile day. “I can discern that you’re feeling improved, because you’ve commenced complaining about me anew,” my husband remarks. On certain days, I feel nearly akin to my former self; on others, less so. The discomfort, prickling sensations, and spasticity have also abated, though they persist in appearing and vanishing in accordance with an inexplicable schedule of their own fabrication.
In M.S. more broadly, the enigmas are abundant. Not solely are relapses unpredictable but scientists have yet to explicate the gradual and insidious deterioration that frequently transpires even without new lesions. Given the ailment’s expansive array of trajectories and manifestations—from gentle and manageable to severely incapacitating—some now deem it a cluster of ailments, rather than a solitary one. With M.S., the sole certainty is incertitude.
Perhaps that constitutes what renders my diagnosis so psychologically trying. It is arduous to grieve when one is unable to even ascertain what one has forfeited.
•
Despite all that has transpired, I endeavor to remain optimistic—even when I experience despair and, like Proust’s narrator, desire to withdraw back under the covers and never rise again.
An electromyography assessment I underwent in May—imagine being shocked in the legs by an electrified fence for thirty continuous minutes—validated that I am not afflicted with A.L.S. During moments of despondency, I remind myself of this truth.
And, in June, I commenced a somewhat recent disease-modifying therapeutic approach that employs monoclonal antibodies to diminish problematic B cells within my organism. Ideally, this will avert new inflammation, and—with apologies to my insurance provider—it merely costs nine grand monthly. Clearly earmarking me as a prospective source of revenue, representatives from the pharmaceutical enterprise that fabricates the drug have been e-mailing, texting, telephoning (“Hey there! It’s Karen from Kesimpta . . .”), and dispatching brochures and accessories: a “wellness notebook” featuring decorative stickers, an “on-the-go cooler” in which to store my injections. “YOU GOT THIS!” proclaims the flap of one envelope.
I feel inclined to correspond with, “I REALLY DON’T!”
But, thanks to all the precipitation last spring, the hydrangeas in my garden flourished uncontrollably over the summer. (Honestly, who in our current dystopia hasn’t behaved similarly?) And the blossoms were not solely magnificent but a memento of the prospect of renewal. To that conclusion, I have been collaborating with a physical therapist to reconstruct my strength and endurance. Swimming assists, as well, I’ve ascertained—particularly in the sea, where my limbs perceive as blissfully weightless as the shimmering diminutive fish flitting around me.
For me, as for the nation, deep within its own autoimmune-esque malady, it appears, the optimal countermeasure to being debilitated is to rally. I eagerly anticipate the juncture at which I am sufficiently well to march in the thoroughfares anew. That, too, sustains me. ♦
Sourse: newyorker.com
