One afternoon at the start of April, I am on my way home from an errand when my legs seize up; they are suddenly so stiff that walking feels impossible. Standing on the sidewalk, I call my husband. Luckily, he is working at home and comes to get me. Hanging on to him, I am able to shuffle the last two blocks.
In the E.R. at NewYork-Presbyterian, a couple of hours later, while I wait to be seen by the neurologist on call, I watch a middle-aged mother fussing over her twentysomething daughter, who seems to be suffering from a similar affliction. The mother is clearly a person of means, and she badgers the nursing staff about when her daughter’s private room will be ready. Her sense of entitlement is irksome; nevertheless, I’m impressed by her devotion to her daughter.
Her overbearing presence takes me back almost twenty-eight years, to a week I spent at this very hospital being treated for multiple sclerosis. My mother came to see me once. She announced that my father had parked illegally, so they couldn’t stay long. Like the mother in the E.R., she was devoted, but she never could deal with illness or adversity. I am glad, this time, to have my youngest daughter, who is seventeen and fiercely competent, with me.
“It is perfectly true, as philosophers say, that life must be understood backward,” Kierkegaard sagely wrote in his journal, in 1843. “But they forget the other proposition, that it must be lived forward.”
Since my mobility became impaired in April, however, it has sometimes felt as if I were living backward, too—perhaps because learning to walk is regarded as one of the most significant developmental milestones in the life of an infant. At the same time, my health crisis has seemed entirely of the moment, at least the political one. Just as a plurality of American voters in 2024 knowingly elected an Administration that is intent on crippling everything that has made the U.S. the envy of other nations, my immune system, in the throes of M.S., has directed B and T cells to attack the myelin sheath that insulates the nerve fibers of my central nervous system, impeding my functionality and triggering weakness and pain.
I am still trying to make sense of it all.
•
The last time my legs gave out on me, I was a month shy of my twenty-eighth birthday. Back then, system failure occurred in the space of twenty-four hours. On waking one morning, I found that a swarm of pins and needles had seemingly replaced a limb that had been sturdy the day before. When I tried to put weight on my left leg, it felt as if there was nothing to hold me up. Soon, the sensation of numbness spread up the entire left side of my body.
An MRI detected a small lesion on my brain stem. After a spinal tap confirmed my neurologist’s suspicions, I was provisionally diagnosed with a clinically isolated episode, which is often the first presentation of M.S.
Two months later, my paralysis lifted as mysteriously as it had appeared. Follow-up MRIs during the next several years showed no new lesions on my brain or my spine. At some point, my neurologist sent me out of his office and into the world with the dictum “Go enjoy your life.” (Since disease-modifying treatments have emerged and neurologists have come to understand that clinically isolated episodes are nearly always indicative of M.S., this advice is no longer given.)
I did my best. And, eventually, so many symptom-free years had gone by that my diagnosis began to seem like just one more zany tale from my careening twenties.
M.S. had so thoroughly vanished from my mind as a concern—or, really, I had so successfully buried the memory of it—that late last winter, when I began to feel a sharp pain running up the back of my left leg as I lay in bed, my first instinct was to book an appointment with a sports-medicine doctor.
When that doctor’s MRI of my lumbar spine showed little of clinical interest, however—and then my leg began to weaken—it all felt strangely inevitable. Like Freud’s return of the repressed. Or maybe Dickens’s Ghost of Christmas Past.
By the time I found myself stranded on a Brooklyn street, it seemed as if the ghost had reappeared to point out not my miserliness but my foolishness for ever having believed that I was O.K.
•
For decades, I.V. steroid infusions have been the standard treatment for M.S. relapses. These are supposed to speed up one’s recovery from symptoms.
While I am on the receiving end of the first of three infusions, the woman in the chair to my left orders (and receives and consumes) three bags of food from Grubhub. The woman to my right, who uses a wheelchair, has fallen asleep and is snoring. Keen to separate myself from the suffering and abjection around me, as if I were merely an interloper and not an active participant, I put in my earbuds and cue up the new album by Lucy Dacus.
A few nights earlier, I had limped through Radio City Music Hall with my daughter, to see Dacus perform. We’d purchased tickets months ahead of time, and I didn’t want to disappoint her. But dread had become a constant companion whenever I embarked on an outing that wasn’t close to home. Like a swimmer who has ventured out too far, I feared that I wouldn’t have the strength to return to shore and would panic. Above all, I feared panic itself, to the extent that it became hard to differentiate between central-nervous-system dysfunction and cortisol response. (As it happened, I made it through the concert without issue, but, hemmed in by hundreds of concertgoers on a subway platform afterward, I didn’t think I would survive the trip home.)
When I complete the infusion, a heroically effervescent nurse warns me with a laugh that I may be buzzing around my house at 4 a.m., frantically cleaning out my closet. On the way home, I type “intravenous steroid side effects” into Google—and learn that the list includes headache, dizziness, changes in personality, bulging eyes, and “inappropriate happiness.” I find myself wondering if it’s ever inappropriate to be happy. Shouldn’t all opportunities for such be embraced, especially at a time like this?
Conversely, I ask myself if it is appropriate for me to be unhappy. Do I even have that right? After all, I made it more than twenty-seven years without any flareups. From a certain angle, I am one of the lucky ones.
And, yet, in recent months, I have felt terribly unlucky. Why me? I keep thinking.
On the one hand, I am aware of having purposefully carved out a life that allows me to spend most of my waking hours at home, with my laptop and books. On the other hand, even before the onset of symptoms earlier this year, I had been feeling ashamed of how small and—in both economic and literary terms—unproductive my life had become. My sudden disablement feels like a manifestation of my old fear that, while others forge ahead with their travels and triumphs, I am, per usual, Going Nowhere.
•
In my mid-twenties, I had a boyfriend who used to order for me in restaurants. “She’ll have the roast chicken,” he’d tell the waiter. I recognized that this was problematic. But, somehow, I couldn’t bring myself to protest. Back then, the whole business of adult life seemed beyond my skill set.
Another part of me believed that I was too busy writing important works of literature to concern myself with the mundane details of daily life, like what to eat for dinner.
Although I’ve become far more self-sufficient in the decades since, my husband still accuses me of “learned helplessness.” He isn’t entirely wrong. I haven’t yet figured out how to use our smart TV. Although I maintain an up-to-date New York State license, I never drive. The mere sight of IKEA instruction manuals causes my eyes to glaze over, to say nothing of home COVID tests.
Since becoming involuntarily reliant on others during this relapse, however, I’ve found that dependency has lost its allure.
•
A few days after my first steroid infusion, I find that I can lift my left leg off the ground again. But, after that, progress appears to stall, then reverse itself. In mid-May, I can hardly make it to the end of my block.
Around the same time, I receive a pinging alert from my iPhone, warning me that my daily step count has dropped precipitously. On several days in the past few weeks, the recorded count was actually zero. I have never received a message from my fitness app before, and it leaves me startled and defensive. As if my sudden turn to sedentariness were the result of indolence, not infirmity. “It’s not my fault!” I want to protest, but I would only be replying to tracking software.
Disablement is just one item on the M.S. menu of misery. I have also been suffering from other common symptoms, including tingling, numbness, and spasticity. It is difficult to describe the latter sensation, but to attempt to walk in the throes of spasticity is to feel as if bags of topsoil had been strapped to the back of your knees. Chronic neuropathic pain, however, is the most unwelcome of all the interlopers. Sometimes, it descends on the area above my left ankle. Minutes later, like a fly that evades swatting, it will crop back up on the outside of my thigh—or switch sides and attack my right toes or knee.
In search of relief, I book an appointment with an acupuncturist.
With off-putting brusqueness, the acupuncturist sticks needles into my head and left leg, leaves the room—and appears to forget all about me. After forty-five minutes, despite the piped-in lute music, I become suddenly anxious. “Hello?” I call out. And then, “Hello?!”
No one answers. I try again, louder this time, and with panic building.
Finally, the acupuncturist returns to the room and apologizes. “I should have gotten to you first. I lost track of time.”
To be fair, she isn’t the only one. Lately, I seem to have lost track of everything—sometimes even what day of the week it is. My cycling and ever-changing symptoms keep directing my attention back to my body, making it difficult to concentrate on anything else.
Or, at least, anything except the latest horrific headline.
•
In between bouts of doomscrolling, I have been asking ChatGPT questions about my condition, then feeling vaguely queasy about having done so. I fear the practice fuels obsessional thinking on my part. It also feels akin to cheating. After all, members of the medical community spend years accumulating expertise. They examine us in person. Their conclusions are likely to be far more reliable than A.I.’s “educated” guesses.
But doctors are busy people, especially those who work at research hospitals and rely on insurance payments. And, especially in unclear cases like mine, A.I. tantalizes with both its endless availability and the promise, however illusory, of uncovering the hidden causes and mechanisms that mere mortals might have missed.
It goes even beyond that. To be human is to be needy, and to seek affirmation and solace. Between medical appointments, it can seem as if the chatbot, which is programmed to preface its conclusions with expressions of empathy and concern, is the only one that cares. “That is a very difficult and frustrating situation, and you’re asking a completely valid question. Here’s a breakdown,” it replies to one of my queries.
I also suspect that I am asking “Dr. Chat,” as my friend E. calls it, to play the same role that, in my twentieth-century childhood, Ouija boards and Magic 8 Balls did—that is, to predict the future. Really, all my questions are variations on the same question: Am I going to get better?
Of course, no one can predict the future, not even A.I. But some part of me wishes that the bot would skip the faux humanity and the bullet points, and—like the analog, mid-century Magic 8 Ball—simply reply with a blue-lettered, triangle-framed “OUTLOOK GOOD.”
•
Here is something else that makes us human: vanity.
In truth, I used to be quite vain about my legs. (Once, my long legs seemed like compensation for my flat chest.) I was especially pleased with them during my first years in New York City. Having read Jean Stein’s oral history of the Warhol Factory starlet Edie Sedgwick, “Edie: American Girl,” I became captivated by her glittering, if tragic, life—and, in homage, began pairing vintage A-line minidresses with black tights.
These days, I’d rather admire the faces and forms of my daughters than contemplate my own increasingly etiolated reflection in the mirror. But vanity hasn’t completely abandoned me. I haven’t stopped fretting over my perceived visual flaws, and every so often I am disappointed to find anew that strangers no longer look at me twice.
At the same time, invisibility has come as a relief, insofar as my vanity always kept company with self-consciousness and self-flagellation.
Nevertheless, when a new neurologist describes my brain as “beautiful” while examining my MRI images, I admit to feeling pathetically flattered. She seems especially impressed with a series of squiggly, inchworm-like lines, which, I am told, represent my blood vessels.
At my age, one takes compliments where one finds them.
•
But, even if my brain is still beautiful, I can’t help thinking that it, like my legs, has betrayed me. More generally, I have never been so aware of the inadequacy of the crooked straitjackets in which we remain imprisoned for life. Why didn’t evolution produce a more dependable version of the human body, less prone to malfunction and decay? I wonder.
It is a head trip to think that this very sentence you are reading, and maybe even my willingness to share personal medical details, may, in some minor way, be informed by demyelination in my frontal lobe, an area believed to affect planning, decision-making, and memory. (Recent MRIs of my brain illuminated two “inactive” lesions in my frontal periventricular white matter, confirming my M.S. diagnosis.)
At one medical appointment, a doctor asks if I have been experiencing any cognitive issues. I try to recall if I have, and cannot come up with any instances. But what if my memory itself is compromised? I later worry.
•
Still, there have been upsides to the resurgence of my disease: I currently possess a foolproof excuse not to show up at anyone’s readings, screenings, concerts, parties, picnics, benefits, and religious ceremonies, should I not feel like attending. The same goes for answering anyone’s e-mails or texts in a timely fashion. For the moment at least, no one can accuse me of being self-absorbed and neglectful, either. (For most of my life, I have lived in fear of people being angry at me.)
What’s more, I have nearly conquered my claustrophobia. Or, at least, the version that, twenty-seven years ago, rendered me unable to get into an MRI scanner tube without an intravenous tranquillizer. I have my routine down these days: five milligrams of diazepam thirty minutes prior; eye mask thirty seconds before (no peeking allowed).
During the myriad MRIs that I have had this year—the last one went on for a delirium-inducing hour and forty-five minutes—I have squeezed the panic button only once. Suddenly overheated, I became aware of the cage over my face. Thankfully, the technician responded quickly, sliding me out of the crypt, removing my blanket, and reassuring me that I was “doing great,” before sliding me back in.
As if lying there playing dead while gradient coils conjure an otherworldly racket that best mimics a mashup of jackhammers and Philip Glass were an admirable skill. (Maybe it is?)
Another positive to my malaise: I have been touched and amazed to discover all over again what wonderful friends and family I have. They are constantly writing to see how I’m doing, coming over to visit, bearing food and drink, picking me up in their cars, and taking me for drives.
In honor of my semi-invalid status, I have also cracked open the first volume of Lydia Davis’s translation of Proust’s “In Search of Lost Time.” So far, I admit to wishing that our frail young hero would buck up a little. But I am only fifty pages in.
Finally, the return of M.S. has offered a welcome reprieve from the pressure to achieve—pressure that has dogged me since I was a child and which is inevitably accompanied by a sense of failure at not having achieved more.
At least for now, my main goal is simply to get better.
Though, as my friend A. recently pointed out, I now have an opportunity to write the world’s first work of autoimmune autofiction. Or should it just be called autoimmunefiction? She even has a title in mind for me: “Life Lesions.”
It feels so good to laugh. . .
•
Even so, my mood craters at least once per day.
One evening, I ask E. if she thinks my life is over. “Absolutely not,” she replies. I can still read, write, and host dinner parties. Also, I have a supportive husband. “Lots of men would leave,” she adds.
“Really?” I say, somehow shocked by the assertion.
“There are so many assholes out there,” E. insists. “But he wants to take care of you.”
Later, I repeat the “assholes” line to my husband, and we laugh about that, too.
But I can’t stop thinking that some part of him must actually want to leave me. For several days, I keep expressing this idea out loud, until he finally gets pissed and tells me never to say it again.
As I ponder my life, it seems somehow accidental that I ended up married to such a good and loyal person; he does not even order for me in restaurants.
Moreover, when one is unwell, it becomes even more apparent that what matters most is love, and the rest is largely noise.
•
Insofar as no “active” lesions were found on any of my MRIs, my neurologist now thinks that I might have suffered not a classic M.S. relapse but a reactivation (or “recrudescence”) of quarter-century-old scar tissue in my brain stem, possibly set off by an infection, even though the original lesion is now too small to show up on standard imaging. She sees no evidence of progressive disease, and continues to predict further improvement.
Another neurologist, whom I consulted for a second opinion, thinks, however, that I am in the initial stage of secondary progressive M.S., in which new lesions are not always a feature.
Half a year later, I have seen big improvements in my walking. At the beginning of summer, for the first time in months, my daily step count surpassed a mile. More recently, I clocked a three-mile day. “I can tell you’re feeling better, because you’ve started complaining about me again,” my husband says. Some days, I feel nearly like my old self; others, less so. The pain, tingling, and spasticity have also eased, though they continue to come and go according to an inexplicable schedule of their own making.
In M.S. more generally, the question marks are legion. Not only are relapses unpredictable but scientists have yet to explain the slow and insidious degeneration that often occurs even without new lesions. Given the disease’s wide range of trajectories and manifestations—from mild and manageable to severely disabling—some now regard it as a group of diseases, rather than a single one. With M.S., the only certainty is uncertainty.
Maybe that’s what makes my diagnosis so psychologically challenging. It is difficult to mourn when one can’t even be sure what one has lost.
•
Despite everything that has happened, I try to remain hopeful—even when I feel hopeless and, like Proust’s narrator, wish to climb back under the covers and never get up again.
An electromyography test I underwent in May—imagine being zapped in the legs by an electrified fence for thirty straight minutes—confirmed that I don’t have A.L.S. At low moments, I remind myself of this fact.
And, in June, I began a newish disease-modifying treatment that uses monoclonal antibodies to deplete troublesome B cells in my body. Ideally, this will prevent new inflammation, and—with apologies to my insurer—it only costs nine grand per month. Clearly flagging me as a potential cash cow, representatives from the pharmaceutical company that manufactures the drug have been e-mailing, texting, calling (“Hey there! It’s Karen from Kesimpta . . .”), and sending me brochures and accessories: a “wellness notebook” featuring decorative stickers, an “on-the-go cooler” in which to store my injections. “YOU GOT THIS!” reads the flap of one envelope.
I feel like writing back, “I REALLY DON’T!”
But, thanks to all the rain last spring, the hydrangeas in my garden went mad over the summer. (Really, who in our current dystopia hasn’t done so?) And the blossoms were not just magnificent but a reminder of the possibility of renewal. To that effect, I have been working with a physical therapist to rebuild my strength and stamina. Swimming helps, too, I’ve found—especially in the sea, where my limbs feel as blissfully weightless as the silvery little fish darting around me.
For me, as for the country, deep in its own autoimmune-like illness, it seems, the best antidote to being laid low is to rise up. I can’t wait until I am well enough to march in the streets again. That, too, keeps me going. ♦


















