I Was Writing About a Medical Mystery. Then I Experienced My Own

My left eye performs magic tricks: now you see it, now you don’t. My daughter disappears beside me on the shoreline of a beach, where the murky Gulf foams, darkens the sand, rears back to colder depths. I hold up my arm: beyond my wrist, my hand is gone, though its shadow remains—a phantom dismemberment. My husband steps into the blind spot, and he has no head.

There is a gap between what I see and what I know.

It began the way many life-changing things do: almost imperceptibly. On December 6, 2023, I woke up with a dull headache. My left brow and eye felt tender as a bruise. And in the center vision of that eye was a tiny dark spot I could neither blink away nor see past.

The morning made its demands: cutting waffles, searching for kids’ shoes, yelling, “Outside, both of you,” to the two new puppies who’d once again peed on the curtains. I dropped off my daughter at kindergarten and my son at preschool. At a red light, I stared at a bumper sticker on the car in front of me. A white oval read, inscrutably, Boost Inside, but with the left eye, I could only see the word Inside. Boost simply . . . disappeared, covered with a pixelated mosaic blur like an identity might be concealed in a documentary.

Unnerved, I made an optometry appointment, then met the mom of one of my daughter’s classmates at a nearby coffee shop. She’s a nurse, and I’d asked to interview her for my new novel, which features a live-in nurse caring for a woman with mysterious, unnamed ailments. During our conversation, I tried to pretend her nose wasn’t a smeared absence on her face.

The optometrist was young, with a dark mustache and a scab between his eyebrows. I say young; I mean around my age, 39, and is that young? It feels that way most of the time, until I’m confronted with actual youth—my children, a grocery-store cashier calling me “ma’am,” 20-year-olds giving makeup tutorials on Instagram—or experts who seem to be my age or younger, instead of decades older as I would expect them to be. Then I’m forced to reassess, to ask myself what youth means to me when I’m on the cusp of 40, an age I used to see as decidedly middle, humdrum, with the best, most exciting parts of life behind you. 

This maybe-young, maybe-middle-aged optometrist showed me two photos. In the images, my retinas were smoggy yellow orbs, threaded with red veins like the spindly branches of dead trees. He pointed to a glowing circle, like a headlight, on the right eye: my optic nerve. Showed me its clean, defined borders. Then pointed to the left eye, where that headlight was more like an explosion, large and messy and spreading, lava from a volcano.

“It’s called optic neuritis,” he said—or inflammation of the optic nerve, which is responsible for carrying messages from the eye to the brain. “It could be idiopathic . . .” The silent but reverberated around us. I asked him what might cause it if there were a cause.

The optometrist gave a nervous laugh. “That’s above my pay grade.”

He told me I should see a neuro-ophthalmologist, but the only one in San Antonio was semi-retired, had an established patient list, and “would laugh if he received a referral from me.” My mind snagged on the word neuro. The optometrist asked me to return to the lobby while he made some calls.

While I waited, surrounded by racks of gleaming eyeglasses, I Googled. Symptoms of optic neuritis include pain when moving the eye and a hole in the center of your vision. Optic neuritis can be idiopathic and resolve within a year. But it’s also often the first sign of muscular sclerosis.

There’s a 50% risk of developing MS within 15 years of an episode of optic neuritis. That risk balloons to 72% if an MRI—the recommended next step after a diagnosis of optic neuritis—shows lesions on the brain. Women are two to three times more at risk than men of developing relapsing forms of MS and often diagnosed between the ages of 20 and 40.

My hands shook as I texted my husband. I felt unmoored in my body, as if I’d awoken in a different house than the one where I’d fallen asleep, or perhaps the same house, only in the morning it was missing a roof. A sudden sense of unreality, the familiar overlaid with strange, the uncanny valley between what had been and what might be.

I pictured my children in their classrooms and ached with bittersweet gratitude that nothing had changed for them. Perhaps it wouldn’t. Then the optometrist hurried out with a name, phone number, and address scrawled on a sheet of printer paper. He’d referred me to an ophthalmologist, and the appointment was set for Friday, two days later. Never had a doctor made a referral appointment for me, on the spot, scheduled with such glaring immediacy.

By Friday, the tiny central blind spot had shifted to the left and expanded like a black hole, my pupil blown out and unresponsive to the light I shone on it in the mirror. I went for a walk in the mild winter chill and couldn’t see the houses to my left. My husband, Adrian, returned from taking the kids to school and insisted we go to the emergency room. If an MRI was likely the next step, maybe we could get it done before my appointment with the ophthalmologist that afternoon.

He drove us, and I clutched his hand. The last time I’d truly panicked had been after taking a wrong turn on a solo hike in West Texas, ending up flush against the side of a mountain, which was too steep to keep climbing down or, seemingly, back up. I had whimpered and panted, struck by my absolute aloneness. There was one rock I could possibly use as a foothold, but if it gave, I’d fall. I felt that way now, in the car. Panicked, on the verge of falling.

“I can’t see you,” I said to Adrian. “I can’t see you.”

He gripped my hand back hard, grounding me. I wasn’t alone this time.

My bloodwork and CT scan came back normal, but they couldn’t do an MRI without a referral because this is America and nothing in health care can be straightforward. We left the ER hours later, in time to pick up the kids from school. I wanted to protect them from the fear we were feeling, the uncertainty about the ways our lives might change. I wanted them to remember me the way I’d been instead of the way I might become. I was already thinking in terms of their memories of me, and mine of them. Since we didn’t have childcare, we decided Adrian would stay with them while I went to my appointment. They were on the backyard swings when I waved and called, “See you guys in a little bit!” I didn’t even hug them goodbye before walking out to my Uber.

A packed, dim waiting room. Bluey on the wall-mounted TV. Dilated eyes. Hours after I arrived, the ophthalmologist, another white man my age, took my eye pressure and showed me more photos of my retinas. Impassively, he told me I had papilledema, optic-disc swelling caused by increased intracranial pressure.

“There’s pressure in my brain?” I said, aghast.

He Googled a phone number, picked up his cell phone. “I’m going to call over to the emergency department and tell them to expect you.”

It was 6 p.m. on a Friday. Time for the kids’ dinner, bath, bed. The nightly ritual I’ve performed most of the days of their lives. Instantly I regretted all the times I’d counted down till they were asleep, so eager for a few hours of adult time. One day, they say, you’ll put your child down and never pick them up again. There’s a last time for everything, and mostly we never see it coming. Some kind of line was being drawn, a before and after. I could feel it, and shuddered against its coldness.

“I have to go right now?” I asked. “I mean—it’s that urgent?”

“Yes,” the ophthalmologist said flatly, phone to his ear, though with enough pity that I sat up straight and ordered another Uber.

The MRI machine was loud. I lay still, eyes closed, a warm blanket over my legs and pillow beneath my knees as it clanked and groaned. With each metallic bang of a captured image, I imagined other snapshots: my kids on the swing set, the way I’d casually waved as I left. My son mixing pancake batter, his dimpled knuckles. My daughter grinning in her rainbow goggles. Floating with Adrian in a calm ocean. Family lunch at my parents’ house. The Australia trip we’d planned in April to see Adrian’s family. Past and future, fear and yearning, tangled and knotted. The secrets we keep from our children about the capriciousness of loss and violence, the never-guaranteed tomorrows. Please, I thought, over and over again. Please.

Adrian asked a friend of ours to stay with the kids while he joined me at the hospital. I spent the night in a cot in the triage room, where cold saline dripped into an IV and I was given painkillers for the headache. Early the next morning, a kind, red-bearded nurse told me the MRI showed brain lesions. But, he added, they were inconsistent with MS lesions. “Do you get migraines?” he asked, and I shook my head. Well, he told me, a hospitalist would be in soon, followed by a neurologist. A room had opened up on the neurology floor, and I’d be taken there soon for more tests and a five-day course of IV steroids to try to reduce the inflammation in my optic nerve.

“Five days?” I exclaimed. “Am I going to be here for five days?”

The nurse was sympathetic. “The doctors will have more answers than I do.”

But they didn’t. “An interesting case,” they said. “An anomaly.” My left arm blossomed black with bruises from the multiple daily blood draws. A second CT scan, two more MRIs. A lumbar puncture. Mornings of IV steroids, flushed cheeks and pounding heart. A patch over my eye, pirate jokes. My vision was so unbalanced that I felt dizzy with my eyes open. I couldn’t watch TV or read. I wondered, if it came to it, if I could learn to see with my hands, use them to trace the changing contours of my family’s faces, comprehend a language of raised dots. I scrawled notes for myself, for my novel, an act of hope. Joked that this was all elaborate field research, anything for the art!

I heard patients in the rooms on either side of me coding. Imagined leaving my children without explanation or goodbye, not getting to watch them grow up, answer their questions about the world, hold them through their own joys and sorrows. I imagined Adrian raising them alone. Imagined them forgetting me. That was the one truly unbearable thought.

My mom and sister drove from Laredo to San Antonio. Friends rotated with Adrian for childcare. My brother and sister-in-law brought my baby niece, a jolt of purity and joy. My dad filmed increasingly elaborate skits starring himself as a character he named Rodeo Popo, which made me laugh until I cried.

There were no apparent masses or clots in my brain. The markers for various autoimmune diseases, including MS, trickled in slowly, all negative. No one could tell me why this was happening.

“You’re in your Medical Mystery Era,” my brother joked.

Friends gifted me audiobooks, sent care packages, earned honorary MDs from the Google School of Medicine. I asked for my IUD to be removed after a friend read that it might be linked to an elevated risk of something called pseudotumor cerebri, or increased pressure in the brain that can cause symptoms of a brain tumor, like papilledema. An actual doctor friend made calls and did research. My sister started watching episodes of House on the off chance some TV writers had scripted a situation like this. I used to love that show, much in the way I loved Law & Order: SVU or murder docuseries. The terrible thrill of knowing a particular fate hasn’t befallen us, so therefore we are safe, and perhaps we, along with the doctor or detective, might solve the crime of other bodies’ betrayals. It’s different, of course, when the body in question is your own.

The morning before my lumbar puncture, when spinal fluid would be removed and examined for markers of brain and spinal cancer; increased pressure in my brain; bacterial, fungal, and viral infections; and autoimmune diseases like MS, there was a brief snafu when my favorite nurse said, “Hey, Katie, random question: you’re not pregnant, are you? ‘Cause Bill from Radiology put a big banner on one of your images saying we need to confirm how far along you are.” I was not, in fact, pregnant – Bill had simply mislabeled me – but briefly I hoped I was, that this was all somehow the beginning of a new life, instead of the possible end of mine.

I’d had 39 years of mostly good health. So many and too few. Right before all this happened, I’d been contemplating the fine lines on my forehead, the deep crinkles beside my eyes when I smiled. I’d been thinking about these “visible signs of aging,” wondering if I should make a Botox appointment. As if aging were a curse I could reverse with the right skin care. Now I wished for more lines, more years.

Inside, I felt close enough to touch all my selves: the 5-year-old stroking ladybugs on a chain-link school fence; 17 and going 95 on the highway because grown life was just starting and I was immortal; 27 and separated, crying in my parents’ bed; 33 and remarried, first child hot and wailing on my chest; 35, a second baby in a pandemic; child, woman, wife, mother, daughter, sister, friend. In the hospital, all my selves held hands inside me, waiting.

I missed my daughter’s school Christmas pageant. She was a sheep. On FaceTime, she asked, “Mommy, are you going to die? Because my friend’s aunt went to the hospital and no one took care of her and she died.”

“No, baby,” I said. “I’ll be home soon.”

I raised my arm, watched my hand disappear. Tilted my head and lost the air-conditioner vent. My sister slipped into the blind spot and vanished.

At night I wondered how I’d found myself in the kind of doom scenario that, ever since having children, has sometimes loomed over me like a dark wave, pulled back silently from the shore to collect on the empty horizon and curve back around, a watery scythe. I wondered if my daughter would ever forgive me if my hope turned out to be a lie.

After five days, I was discharged with no answers.

I should see a neuro-ophthalmologist, they said. Plus a regular ophthalmologist, a neurologist, and, if I was worried, perhaps an oncologist. Would they help make those referrals? I asked. No, they said, and handed me a long printout of names I couldn’t read. I’d need to figure out which specialists were in-network, then ask my primary-care doctor to make referrals, then wait for my HMO insurance to authorize them, and then finally set the appointments, quite possibly for months in the future. I felt stunned and overwhelmed, shunted back to the start as Adrian walked me slowly to our car.

The next morning, my vision deteriorated with shocking swiftness, as if a pane of frosted glass had descended, thick and impenetrable. “I think I’m going blind,” I told Adrian, trembling so violently I could feel my neck stiffening, on the cusp of a debilitating muscle spasm. My parents had driven up, and they stayed with the kids while Adrian took me for an emergency ophthalmology appointment. By that time I could hardly move my head. Could hardly see anything from my left eye at all.

It was a different doctor that day, an older man with Christopher Lloyd Back to the Future hair. He took one look into my eye and diagnosed me with a corneal infection and pseudotumor cerebri—the false brain tumor with a possible link to the IUD I’d had removed. Adrian and I looked at each other in shock. It could be treated, he said, and I’d get my vision back. We laughed and cried, and the doctor was out of the room on the tail of the same whirlwind that had blown him in.

I started taking the diuretic and antibiotic eyedrops he’d prescribed. The next morning, the frosted-glass effect had lifted from my central vision. I was no longer as dizzy or off balance, though the blind area remained. I crashed into Adrian’s arms, weeping as I told him it was better. I was better. I’d never been so happy to brush my children’s tiny pearl teeth, to help them pull uniforms overhead and socks over uncooperative feet. All those beautiful, banal moments I had missed so desperately.

Then the neck and head pain descended again, paralyzing in its intensity. It was the kind of pain that made me rank my worst pains, starting with childbirth, and wonder if this was worse. Adrian drove the kids to school and I went back to bed. Strangely, the pain disappeared completely as soon as I lay down. Not a muscle spasm, after all, but a post lumbar puncture headache. My spinal fluid was leaking. I needed to return to the hospital.

I did not have pseudotumor cerebri. Nor was it ocular shingles, my next diagnosis, by the ophthalmologist who’d first sent me to the ER.

In the days, then weeks, after the hospital, I reviewed every word of hospital paperwork, more than 100 pages, as if I might find something the neurologists didn’t. A pattern, a clue. The possible diagnoses that first night had included stroke, aneurysm, and brain tumor. It was strangely validating: I’d had reason to be so afraid. To give Adrian my passwords, remind him of the letters I occasionally write to our kids and how to find them. To mourn my unfinished book. My unfinished life.

Every time I caught myself asking how this, whatever “this” was, could be happening to me, I answered myself back: I am not special. A pleasant woman who appears stated age. A generic description I saw over and over in my hospital notes, worried like a stone between my fingers. I am anyone, everyone, a soul within a body that is temporary, fragile, finite. The body’s loss happens to us all, but doesn’t the soul always perceive it as a tragedy?

The doctor who put us on the path to real answers was, improbably, our kids’ pediatrician, Dr. Yvette Almendarez.

It was the week before Christmas, and both kids had gotten sick. Adrian, who’d been single-handedly keeping our family going for weeks, took them to Dr. Almendarez, a family friend who asked if I’d like a second opinion on the shingles diagnosis. Her close friend was an ophthalmologist and she’d be happy to put in a call.

I went to see Dr. Teresa Treviño Whitney two days later. She spent nearly two comprehensive, gentle hours with me. The optic nerve was still enormously swollen despite the five-day course of IV steroids. It was also white and fuzzy when it should be pink and smooth, and there was inflammation in the uvea, the middle layer of the eye, which no one had noted yet. She referred me for bloodwork and promised to find me a specialist in uveitis. When I left, she said, “I may not have all the answers, but we’re going to figure this out.”

Of all the doctors I’d seen, she was the first to say those two simple things. A new space opened up between the known and unknown, a place to rest. I had a teammate now. A we.

In the weeks since leaving the hospital, MS had not been entirely ruled out. It seemed less likely, based on test results, but I was intermittently convinced it was the answer since the one thing everyone agreed on was optic neuritis. Plus, those brain lesions, however small and atypical. At night, my arm and leg began jerking, waking me from uneasy sleep.

The horror I’d initially felt at the possibility shifted into something quieter—the understanding that I could live with an MS diagnosis because I would still be living. As my blind spot remained, unchanged, a different lens sharpened and clarified. We all have to find ways to live in our bodies as they age and change. I would find a way to live in mine, and I would be grateful, because I’d heard the alternative in those hospital rooms coding beside me. I would accept anything, anything that let me stay in my life, however redefined it might become.

Three days after Christmas, Dr. Mamta Agarwal, the uveitis specialist Dr. Whitney had found for me, examined me in near silence. She was cool, almost aloof, as she softly directed my dilated gaze. When it was over, she said, “It’s toxoplasma chorioretinitis.”

Adrian and I exchanged dumbfounded glances.

“A toxoplasmosis infection,” she said. “Do you have cats?”

I shook my head. Only those two curtain-destroying puppies, then three months old, who may or may not have been the culprits. Dr. Agarwal told us toxoplasmosis is very common, caused by a single-celled parasite in animal-to-human contact or contaminated food or water. It infects approximately a third of people worldwide, and about 11% of Americans have had the infection. Most infections present as a cold, if there are any symptoms at all. Only 2% occur in the eye, and only a small percentage of those are symptomatic. When the infection is acquired as opposed to congenital, it’s usually unilateral. Dr. Agarwal saw this all the time in India, where she’d worked for nearly 20 years before moving to Texas.

“So . . . I don’t have optic neuritis?” I asked.

She shook her head. “No.”

I couldn’t speak. Couldn’t believe how quickly and firmly she’d just dislodged the foundation undergirding everything that followed: the excruciating hospital stay, the terror of sudden death, the crushing disappointment of misdiagnoses.

We’d need bloodwork to confirm, but she wanted me to start medication immediately: oral steroids, two antibiotics, two eyedrops, an antacid, and calcium. Nearly 20 pills a day for the next six to eight weeks.

“So—” I hesitated. “I’m going to be OK?”

She smiled. “You’re going to be OK.”

One week later, my bloodwork came back positive for toxoplasmosis.

Treatment ended up lasting five difficult months. On the first day I finally took my son to school, he tripped and I tripped over him; then I fainted. Five weeks into treatment, a rash spread across my body like an acid burn, requiring a biopsy. Dr. Agarwal told me to stop the medication in case I was having a reaction to it. The rash faded and I restarted the medication. One dose and I woke up scratching hard, my skin mottled and scalded. Every pause in treatment meant the infection had time to rebound. In addition to the blind spot, I developed a filmy haze and amoeba-like floaters in my left eye that remain even now.

Finally, in early summer, Dr. Agarwal told me the infection was no longer active. Toxoplasmosis can’t be cured, only controlled, and recurrence rates for ocular infection are between 40% to 79%. She would keep a close watch on me for the next year. After months of sometimes weekly appointments, I no longer saw her as cool or aloof but deeply caring, even calling me personally for updates during that allergic reaction. It does not escape me that the three doctors, of the very many I saw, who treated me as a human being, and for whom I didn’t need to perform pleasant competence, were young—or rather, my age—women of color.

Throughout the course of those long months, I often wondered where I was in the medical -mystery narrative: were these new, unruly symptoms the beginning, or did they preface a sudden end? Were the false promises of the first diagnoses the murky middle, soon to give way to a satisfying denouement of recovery and healing? Or was I, actually, still at the start, the way some illnesses never go away but become part of us, invisible and chronic? Any attempt to write the narrative in my own mind failed because I never knew where I stood in it.

Now I see that medical mysteries resist linear storytelling. My recovery looks the same as the initial illness, when all the houses fell off the world to my left. Optic nerves don’t regenerate. Way in the back of my eye a bridge has fallen between what my eye perceives and what my brain interprets. The only difference is back then I thought I was dying. Now I know this is life. This is living.

Sometimes, when I bump into something or lose sight of my child, I still think about my vision in terms of loss, of lack. Other times it strikes me as a strange and lucky wonder, to know something exists but watch it disappear. A Dalían world, my own mind’s eye. A jester, a trickster. A new kind of sight, to be able to hold what I know in spite of what I can’t see. Every day a reminder that here, in what I now hope turns out to be the early middle, with so much still before me, anything can happen next.