This story was funded by our members. Join Longreads and help us to support more writers.
Heather Quinn| Longreads | September 2019 | 21 minutes (5,102 words)
Obtain for me, by your intercession with God, perfect vision for my bodily eyes, and the grace to use them for God’s greater honor and glory and the salvation of souls.
— Prayer to Santa Lucia
Santa Lucia holds her left arm outstretched, a silver platter balanced on the palm of her hand. On the platter rests a disembodied pair of eyes. They are looking, lidded, expressive. What they seem to express, in their straight-ahead gaze, is serenity and knowing, a kind of Mona Lisa without a face. In some images Santa Lucia holds the eyes in her hand directly, without a platter to rest on, with a sort of branch that connects them both like fruit on a tiny tree. I think of optic nerves connected directly — without the brain as intermediary — to the spinal cord. Sight talking to body, vision sent from nerves straight to muscle, a physical and tangible thing.
These are Lucia’s own eyes, though she gazes out from the picture with an identical pair of her own, safe in their sockets. They were gouged out while she was alive, then restored to her after her death.
Lucia is the patron saint of eye diseases, blindness, writers, stained glass makers, the poor, and sore throats. Her name means light and her feast day is attended by young girls in red-and-white gowns with crowns of candles upon their heads.
There are two stories about how Lucia lost her eyes. In one, her mother had arranged a marriage for her, but since Lucia had already sworn her chastity as a devout Christian, she refused. Instead of marriage, Lucia’s mother donated her dowry to the poor. Her suitor denounced her, and she was sentenced to be defiled in a brothel. When the guards came to take her away, she became so filled with God she could not be moved. The guards gouged out her eyes and set her on fire where she stood. The fire went out. The guards stabbed her in the throat. She died. Her eyes were restored just after her death.
In the second version, her suitor was obsessed with her eyes. To assuage him, she cut her eyes out herself and sent them to him. The ending is the same.
When I was 11 years old, my sixth-grade class dissected cows’ eyes. My teacher sourced them from a local butcher. No one eats eyes, he told us. They would have been wasted. My eye came in its own individual plastic bag, smelling of formaldehyde, wrapped halfway in thick sloppy sheaths of fatty tissue and muscle that I had to cut away with my scalpel before the real work could begin.
I remember this as one of my favorite days in school. I wasn’t popular, I didn’t fit in, but this day was one of the few where that didn’t matter. All of us at once were caught up in the shared experience of handling and cutting into those eyes, disgust mixed with curiosity and awe. But aside from that rare moment of belonging, I loved that day because of the eye itself. Inside its fatty covering, emptied of all its fluids, it was beautiful and mesmerizing in a way I never expected, and haven’t forgotten since.
Once I cleared my eye of its fat and muscle, the dissection began with the cornea. Normally a clear, transparent film, the tissue becomes cloudy and discolored after death. In human cadavers, the level of opacity can be used to help determine time of death. My perfectly round cornea was aged to a milky slate gray. A quick cut from my scalpel spilled the thin, clear aqueous humor within and left it deflated, crumpled and ugly. I pulled my scalpel around the circle where cornea meets the outer white sclera. Pulling away the tough, still translucent cornea, I spilled the remaining liquid onto my dissection tray. Beneath that, I found the iris and pulled it out. Then the lens, removed intact, was a rubbery, hard, flattened round lump. I peered through it, imagining I saw as the cow saw.
Get the Longreads Top 5 Email
Kickstart your weekend by getting the week’s best reads, hand-picked and introduced by Longreads editors, delivered to your inbox every Friday morning.
I have a picture of that day, taken by my teacher. I’m standing next to another student and we’re both holding the front halves of our cows’ eyes in front of our own, corneal side facing out, as if we could see through them. Our smiles are huge.
I still dissect outside of the classroom lab. Eating carrots, I bite only halfway through, splitting the root lengthwise, and pull the crisp sweet flesh of the outer tissue clean from the central vascular core of the root — a thin, smooth-sided structure with limbs expanding outward like branches of a leafless tree. When I prepare raw meat I take my sharp knife or bare fingers and tease out layers of tissues. The connective tissue pulls away — an intact, transparent sheet.
In my dissections, I learn there are certain seams on a body or object that yield easily to the subtle knife. There’s a whisper-thin space between layers where the scalpel seems to move, to cleave, under its own power, the way a pair of scissors can hit a piece of paper at just the right angle for a straight smooth cut that seems to happen on its own. These are satisfying discoveries, these seams. They suggest that the thing under observation wants to disclose its secrets, that you have approached your subject from just the right angle and attitude, that your subject is in some kind of sympathy with your questing.
But there are also barriers that do not yield easily. The skin. The dura mater enclosing the spinal cord and brain. The stretched-thin muscle of a pregnant womb. They can only be penetrated by the rough cut that breaks. The hand holding the knife feels the sloppiness of the work, sensed by vibrations echoing through the handle, proving that this investigation is necessarily preceded by an act of violence.
Is it the case, then, that the thing under investigation was better viewed in its wholeness? I had thought I gained some special insight through this cutting, that there was value in the basic understanding of how the pieces fit together, in those brutal mechanics. It seemed a very special way of seeing. It isn’t until now that I realize: Dismantling the cow’s eye never showed me how the cow saw. The dissection showed me the mechanics of sight, but it couldn’t show me the picture projected through the lens, upside down, on the living animal’s retina. The truest part of the dissection was when I held the halved eye up to my own and looked through it. What I saw: nothing.
There were many occasions to be dissected when I was pregnant with my first child. There were IVs attempted and abandoned for better openings, IVs placed and left in my best vein, the dark blue line on the inside of my left elbow. There was the thin rubber balloon snaked through my cervix and inflated under my uterus in an attempt to force my womb to open. There were the deep cuts with the scalpel to open skin, abdominal muscles, and uterus, the gloved fingers widening the opening to release the wedged and angry baby curled up inside. These are all routine to the modern experience of pregnancy and childbirth. The pregnant body is subject to interrogation by doctors and nurses in the form of cuts and pricks and pokes.
A third of the way into my pregnancy I developed a complication. It started with a headache, intense pain and pressure that lasted for days with no break. I could feel my pulse echoing through my skull. I fantasized about drilling a hole in my cranium to let the pressure out. I would have done anything, but I wasn’t even allowed ibuprofen, for the sake of the baby. All I could do was wait for it to be over, sleep, and complain. I had frequent migraines before becoming pregnant, and I prided myself on my high threshold for pain. But these headaches broke me.
The headaches stopped after a few weeks, but they were replaced with subtle changes in my sight. First, I noticed glowing green flecks that moved across my field of vision, like the afterimage you get when you stare too long at a bright light. Initially it was just a handful of little spots, but it gradually increased until it felt like I was peering through a screen of green static. It was hard to focus my eyes on a book or computer screen, it was difficult to drive. When I went to sleep the lights stayed there, dancing against the darkness of my closed eyelids. I was never completely in the dark. I didn’t tell anyone about it, not my doctor or even my husband. Telling someone would have made it real.
Eventually the green spots coalesced into a larger circle of green in the periphery of my left eye. Then that spot dimmed down to nothing, and I was relieved. But in its place grew a dark, black spot. It remained, and grew, this darkness. It got bigger, more and more obvious, and everything seemed darker through both eyes.
When I was alone, or when I thought no one was looking, I played a game with my eyes. Walking around under the clouds, staring at a white wall, looking at my computer screen, I would close one eye, then the other. One eye, then the other. Quick back and forth between left and right, then slow. I would compare what I saw with each eye, with each angle of viewing. I was trying to prove a hypothesis to myself: that there wasn’t anything wrong, that I was imagining it, that this would fix itself, magically, with just a little time. Each time, my experiment proved that hypothesis incorrect. The spot was real, and it was growing.
I finally told my husband. We went to my OB together, and I told her. I had heard that pregnancy can affect vision, and I hoped she would tell me this was normal. Instead, she referred me to a neurologist.
The neurologist was a thin, energetic older man with silver hair and glasses. He began with a standard exam. He hit my knees and wrists, gently, with a rubber mallet to check my reflexes. He pushed against my arms and legs to check my motor function. He shined bright lights in my eyes, watched me walk a line on the floor. Then he asked about my medical history, about past headaches, about my vision. I described everything as well as I could.
Help us fund our next story
We’ve published hundreds of original stories, all funded by you — including personal essays, reported features, and reading lists.
He seemed bored and dismissive. Then, as I attempted to describe what the vision loss looked like, he perked up and grabbed an ophthalmoscope. He bent down to match my height, leaning toward me at an angle that felt almost predatory. He shined a bright light and looked through to the very back of my eyes, one by one, where the optic nerve meets the retina. The optic disc.
Apparently finding what he had hoped to see inside my eyes, he became excited. He seemed pleased, giddy even, to have a theory. He told me that he thought I had a condition called pseudotumor cerebri, characterized by an excess of cerebrospinal fluid around the brain. The fluid is contained by membranes, the meninges, that wrap all the way around the spinal cord, the brain, and out to cover the optic nerves, ending just before the optic disc.
“The fluid goes in and puts pressure on it,” he explained. “It pinches off the nerve like you pinch the end of a balloon.”
“Or,” he said, “it could be a brain tumor.” The symptoms were the same, hence the name: pseudotumor. Before doctors knew about this condition they performed brain surgery, looking for a tumor that wasn’t there. We needed imaging to know for sure.
I would need an MRI, then a spinal tap, then a visit to the ophthalmologist, all that day.
“You normally would have to wait for an MRI, but this is an optical emergency!” he announced cheerfully. “You could go blind completely, permanently, in a matter of days!”
I found your milagro shortly after seeing the neurologist. Two eyes, just like yours. I found them in a bin full of tin body parts a store in Portland. Heads and hearts and legs and arms and lungs and lips, dissected and amputated to become abstracted and symbolic. Just two dollars for each tiny little part. Cast from identical molds, they had subtle differences in clarity. I selected the cleanest cast and purchased it. At home, I hung it on a silver chain and wore it around my neck. The double eyes of the charms look like the eyes on your tray: looking, watching, seeing.
Milagros, from the Spanish for “miracles,” are sacred, magical charms representing wishes and prayers for luck and healing. Used in folk practice in Latin America and on the Iberian Peninsula, they hold spiritual power related both literally and symbolically to their form. Legs grant prayers for wishes for freedom, for travel, for strength. Hearts are for love and romance, for heart conditions, for the Sacred Heart of Jesus or Mary. Arms are for wounds, for embracing, for giving and receiving. Eyes are for sight and vision, for watching and being watched, for protection from the evil eye. And for you, Lucia.
I wore my charm for the duration of my pregnancy, every day, thinking of you. Thinking of my eyes. Hoping that magic I didn’t even believe in would somehow work on me.
Though the condition was described as early as 1893, the neurosurgeon Walter Dandy was the first to standardize diagnostic criteria for pseudotumor cerebri, officially known as idiopathic intracranial hypertension, or IIH. He was also the first to introduce surgical treatment to ease symptoms. In a 1937 paper, he explained:
The subjective disturbances are those of intracranial pressure alone, though at times vague neurologic symptoms may appear; the latter, when present, are fleeting, inconstant, and too ill defined to be of localizing significance. This condition is both immediately and permanently controlled (possibly with rare exceptions) by a subtemporal decompression. Without operative relief, vision, at least, is lost. On the other hand, spontaneous recovery may result before vision is seriously affected. The effect upon life is difficult to estimate, but it is quite probable that in only the most severe grades would life be lost.
Reading Dandy reminds me of our language’s inadequacy to describing the experience of watching the senses slowly fade. I think of my own clumsiness as I struggled to find the words to explain to my doctors, to my husband, what I was experiencing, what I saw as the light dimmed in my eyes. What is the word for the dim spot that grows and darkens and darkens until there isn’t anything there anymore? How can I describe the bending, warping distortion at the edges of sight that make straight lines curved and curved lines wavy? How do I convey my feelings as I watched these things happen, then worry that tomorrow I’ll open my eyes and there will be nothing? That the world before will leave and never come back? The effect upon life, as Dandy said, is indeed difficult to estimate.
My doctors had the words, but they tended not to share them. They listened to my grasping descriptions impassively, seemingly disinterestedly. When they looked inside my eyes, they knew. The growing dark spot was directly proportional to the amount of swelling on my optic disc, precisely measurable by the plots outlined on my visual field tests. It made perfect sense, to them. But they couldn’t know what it felt like to actually look through these eyes any more than I knew what the cow saw.
The diagnosis for pseudotumor cerebri is made with an MRI or CT scan and with a lumbar puncture (LP). The procedure for an LP requires the patient to curl into a fetal position and have a doctor insert a very long needle into their back, between their vertebrae, and past the dura mater that surrounds their spinal cord and wraps all the way from spine to brain. Inside the dura mater the needle collects a sample of cerebrospinal fluid, if the patient is lucky. Sometimes, the needle misses.
My neurologist made me lay on my side, knees as close to my chest as the child in my belly would allow, and dug his knuckles hard into the tender gaps between my vertebrae.
“This is going to hurt. A lot,” he said, before pushing the needle in.
Three times he stuck the needle in. Once inside, he hunted around, pushed, prodded. My husband held my hand tight. He pulled his needle out. Knuckles dug in my sore back again. Needle in, again, pushing, probing, hurting. Intense pain like nothing else, a sickening pain deep through my body, pain to my core. He pulled the needle out once more. Failure and pain, once again. Giving up, he sent me away.
I went back a week later to try the LP again. The second doctor was young and handsome, kind and reassuring. None of his patients had complained of any pain, this handsome doctor said. He was apologetic as once, twice, three times he failed to find that one space where the fluid would gush out. An anesthesiologist completed the procedure. Through the searing pain, through the paralyzing fear, on his second attempt, I thought I could feel his needle settle into place. It was like that whisper-thin space my scalpel sometimes found in a dissection, where the knife seems to move of its own accord through a seam between tissues. But the needle was wrong. In, but not in quite right, the CSF refused to flow. The procedure was, for all its pain, ultimately meaningless.
I can locate the spot on my spine where the needle went in, those eight times. There’s no mark left, no remaining tenderness now two years later, no scar tissue. But I touch it and feel it all again, and I feel sick, light-headed, cloudy.
Walter Dandy diagnosed pseudotumor through cerebral ventriculography, an early brain imaging technique wherein the cerebrospinal fluid is drained away from the lateral ventricles of the brain and replaced with air, allowing the interior structure of the brain to show in greater detail on X-rays. To access the ventricles, a hole was bored into the skull and a needle was inserted through this opening, past the cerebellum, and into the posterior horn of the lateral ventricle. Cerebrospinal fluid was drained out and air injected directly into the ventricle. The hole, made with a specialized drill, was called a trephine. The procedure, called craniotomy, resembled trepanation, an ancient practice of drilling or scraping a hole in the skull to release evil spirits, cure epileptic seizures, to relieve migraines, or just to give the brain more room. For the most part, the practice is looked down upon as pseudoscience. But in its brutality and simplicity, it appeals to me. To solve the mystery of the brain, just open it up and look inside. To relieve the pressure of a swollen brain, crack the skull and let the organ breathe.
Dandy’s treatment of intracranial hypertension was also a kind of trepanation. He used a procedure called subtemporal decompression. Today, it’s called a decompressive craniectomy. Part of the skull on either side of the temples is removed, permanently. The skin is closed back over the hole and left like that. In Dandy’s case files, most of his patients report that their intracranial pressure is greatly improved after the procedure. It allowed their brains to expand and contract as their pressure rose and fell.
Present treatments for pseudotumor cerebri are usually less direct. Diuretics are usually the first, and main, line of defense. It can take these drugs awhile to counteract the rising pressure, and sometimes they aren’t effective at all. The side effects of these drugs can be severe, and in pregnancy, all of them have a history of causing birth defects to babies.
There are also surgical approaches, but I prayed it wouldn’t come to that. They include a procedure called optic nerve fenestration: Slits are cut in the optic nerve sheath, allowing excess fluid to drain away. Shunts can be implanted to drain CSF away from the nervous system to cavities in the chest or abdomen. Shunts can become infected, they can drain too much fluid, and they can become blocked. Pseudotumor cerebri doesn’t cause death on its own, but surgical interventions for the disease sometimes do.
Pseudotumor isn’t much better understood today than it was when Walter Dandy’s day. Researchers still don’t have a clear understanding of what causes it. The disease tends to affect women, especially overweight women, and that might be the best answer to the question of why this condition is still a mystery — the medical establishment doesn’t have the best track record of caring about the invisible suffering of women, especially when those women are deemed overweight.
Pregnant women also have a higher incidence of developing pseudotumor cerebri. I asked my neurologist about this and he seemed unfamiliar with, and uninterested in, the studies I brought him. The reason why I was suddenly losing my vision didn’t seem to matter to him. If pregnancy caused this, maybe I just had to make it to the end of my pregnancy. Maybe then I would be fine. But, whether it caused it or not, pregnancy did limit my treatment options, which made it potentially more dangerous.
I was 19 weeks pregnant when I started taking Diamox. Of the diuretics available for pseudotumor cerebri, it is the least dangerous for baby in utero, but it still carries some risk of birth defects like ectrodactyly and syndactyly — deformations of the hands and feet where toes and fingers are missing or fused together, and oligodontia — a birth defect of missing teeth. By the second day, I already felt sick. I was nauseous, had no appetite, felt weak, exhausted, and depressed. My head felt foggy, and it was hard to concentrate on anything for long. I felt a pins-and-needles sensation on my feet and hands all the time, which reminded me that the possible birth defects for my baby centered on the hands and feet as well.
I was assigned a high-risk obstetrician for the end of my pregnancy. As rare as pseudotumor is, she had worked with several women who had been diagnosed with it, and she had no doubt that pregnancy was a trigger for the disease. Some of her patients went into remission after delivering their babies, some didn’t. It felt good to know there was at least some hope.
I had extra ultrasounds done of the baby in my remaining months. The whole pregnancy seemed to be characterized by a failure to see — everything felt opaque and hidden. At least every other week, her size was estimated, my amniotic fluid measured, her heart rate and other indicators of health checked. Each time I worried something might be wrong, but thankfully it never was. Seeing her image on the screen week after week didn’t help — I could imagine her healthy much better with my eyes closed. With my hand up to my belly, I could make out the individual toes on the foot that kicked, tracing the outline of her legs as she curled up and stretched out inside me. All the peering and questing inside seemed like a nuisance, to both me and to her.
My obstetrician pressured me to have an induction or C-section the moment we arrived at my daughter’s due date, but I resisted. This pregnancy was so carefully monitored by doctors who measured and recorded every detail of my growing baby, my swollen optic discs, the growing pressure of fluid around my spine and around my unborn child. I wanted her birth to be between her and me. I wanted to get her out of me by myself. But that’s not the way it happened.
Almost two weeks past her due date, my daughter was born by an emergency C-section after a failed induction. By the middle of my 41st week of pregnancy, a test detected a slowing in her heart rate after contractions. Something was wrong. We tried a natural induction with a foley catheter, then a less natural intervention with Pitocin. It worked, and my contractions became strong, regular, and painful. But after each contraction, her heart slowed, and it got worse and worse as the contractions intensified. The doctors and nurses would then pull back on the Pitocin to slow the contractions, and then we would start over. After about 30 hours of this, when the doctor said the next step was to break my amniotic sack, I asked for a C-section.
The spinal anesthesia hurt — the procedure is essentially the same as a spinal tap — but not nearly as much as the previous times. Like the other doctors, he didn’t get the needle in the right place. I was numbed on my right side, but not on my left. When they started cutting, I felt it. The anesthesiologist, realizing it was too late to go back, gave me fentanyl, which took some of the edge off, but didn’t stop the pain. I felt the entire procedure, and I felt them stitching me back together while I saw my baby for the first time.
I wasn’t able to hold her right away. My body was shaking uncontrollably, and I was afraid I would drop her. My husband held her next to my face. She had been crying, angry, when they took her out, very alert, and seemingly disappointed with where she found herself. But she calmed once we made eye contact. She looked intently at me. She held my gaze. I dreamt of her many times before her arrival, and now her eyes, her gaze, were the same as when I saw her in my dreams.
As soon as they took my little girl out of me, my eyes started to improve. I could feel it, the lifting of pressure, my eyes no longer feeling like they were being pushed out of my head. I kept taking my medication for a while, but I could tell the darkness was lifting, the world seemed bright and clear once again. There is still a place in my field of vision that is obscured, and it may always be there, but it’s nothing compared to what could have happened. For that, I’m grateful.
But I’m also resentful. When I told friends and family about my condition, they would say, “It will all be worth it when you hold that baby in your arms.” Maybe, I thought. Maybe I wouldn’t wish I could take it all back, maybe I would tell myself that because there was no way to take it back if I could. But it wasn’t part of the original deal, the deal I thought I had made when I read the two lines on the dollar store pregnancy test, when I made the first prenatal appointments and stopped drinking so much coffee. It wasn’t part of what I’d considered the standard package of sacrifices a new mother is supposed to offer up for her baby. The ones who said this, who had had children of their own, they didn’t have to face the possibility of losing their sight for their children.
My husband and I had joked that when she gets older, when she misbehaves, he could tell her, “You nearly blinded your poor mother,” but it’s too true to actually say out loud now that she’s here. I wonder if I’ll ever feel OK about it, if I’ll ever really feel like it was “worth” it, if that will always seem to be beside the point. There’s no one to get angry with, no one to blame, especially not her. She’s wonderful, and I’m so glad she’s here. But for a long time, before meeting her, I wondered: what if I had been told before becoming pregnant that I might lose all of my vision? That I would definitely lose some of it forever? Not yet knowing who she would become, would I have agreed to that deal? Would I have thought the bargain fair?
Considering your sacrifice, the obvious thing would be to take you at your word. You maintained your chastity for God, you dedicated your life and passion to God and Jesus, not men. You plucked out your own eyes so as not to be tempted into lust, into love, into marriage.
Would it be unfair if I read it another way? Perhaps you were willing to go blind so you wouldn’t have to have children. Isn’t that the appeal of chastity? Never having to become a mother, never having to become a wife, needing to only be oneself, for oneself. And, nominally, for God. Is it possible that you didn’t sacrifice your eyes for God, but for yourself? To remain your own self?
I didn’t lose my eyes. But when my girls are both crying at the same time, when I have to hide in the bathroom for just a minute alone, I think about how I’ll always know exactly how long it’s been since I graduated because that’s exactly how old my first daughter is. And knowing this, I compare what I’ve done to my classmates’ accomplishments, and it feels like my sacrifice may have been larger than yours. You got your eyes back, after all. I look at you holding your plate, holding your first pair as if in offering to me, looking at me out of the pair in your head, and I feel as betrayed as I feel grateful. Your sacrifice visible, mine invisible and forgotten.
Lucia, when my oldest daughter was about two months old, I took her to visit my mother’s oldest friend. “Doesn’t life just mean so much more now?” she asked. “Did you even have any purpose in your life before you were a mother?”
No. And yes. Yes, I did.
And when will I be able to see that again, Lucia?
* * *
Heather Quinn is working on a memoir, This is How You Disappear, about their father and the Californian desert. They live in Minneapolis with their husband and two children.
Editor: Katie Kosma
Fact-Checker: Samantha Schuyler
Copyeditor: Jacob Z. Gross