Eyeyeye! Bad Vision, Dry Eye, and Eye Surgery, Oh My

My eye problems started with loving to read.

This blog is mainly about ulcerative colitis, but in this post and the next one, I’ll turn to a different topic: my eyes. As eyes go, mine have lived a fairly adventuresome life.

It all began with my love of books and reading. When I was three or four, my parents overheard me talking to a friend. “Let’s go read,” I said excitedly, leading him toward the bookshelf.

“But I can’t read,” he protested.

“Oh, don’t worry, I can’t either,” I said confidently. “I just make stuff up.”

That was how I always “read” in preschool. I would hold court with all the other kids gathered around me, pointing to the pictures in the books and making up stories for them to listen to.

But soon I really did begin learning to read. I drank in the letters and words, practicing for hours on my learn-to-read books. In elementary school, I read everything I could get my hands on, and by middle school I was reading large, “grownup” books, like Charlotte Brontë’s Jane Eyre and Stephen King’s The Stand.

And that was how I wound up with glasses by age seven, and much thicker glasses as I grew older. At least, this is what I’ve concluded in retrospect, based on articles like this one that recommend sending kids outdoors to help their eyesight.

Until adulthood, I always assumed my poor vision was genetic—I have my mom’s blue eyes, and her vision is terrible like mine. But then she told me her parents both had good eyesight, and that when she got glasses at a young age, the optometrist had posed a wry question to her mother: “Avid early reader?”

Yes, my grandmother confirmed.

The optometrist had already known the answer—all his youngest patients were avid early readers.

When Mom told me this, I was surprised. Why hadn’t she and Dad kept me from reading so much as a kid? Dad was actually in school to become an optometrist as I was learning to read. You’d think that between his training and Mom’s history, both of them would have known better.

But the thing is, only in recent years is science finally studying this and beginning to confirm what Mom’s long-ago optometrist had noticed. Even now, there seem to be very few studies on reading and near-sightedness, so the scientific jury is probably still out. It simply wasn’t, and isn’t, common knowledge that too much reading at a young age might damage eyesight.

So this is my PSA to all you parents of young children: do encourage your kids to read…but not too much, or not for too long without taking breaks. Send them outside too—just in case.

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From glasses to contacts

By age ten, my vision had gotten so bad that an optometrist recommended contacts. My glasses were already becoming so thick as to be ungainly, and my sight was only worsening. From middle school on, I began wearing contacts sixteen hours a day. Putting them in was the first thing I did in the morning; taking them out was the last thing I did at night. I wore glasses when reading in bed, but that was it.

Without contacts or glasses, I literally couldn’t see clearly beyond the end of my nose. At the optometrists’ offices, I not only couldn’t read the big “E” on the eye chart—I couldn’t see it at all. The whole chart was just a blurry white blotch on the wall.

As an adult, in my annual eye appointments, optometrists asked how often and how long I wore my contacts. They also began asking if I’d been feeling any scratching or burning in my eyes, mentioning that some patients who wore contacts this much eventually developed something called “dry eye.”

Dry eye sounded innocuous to me. I would shrug and smile and say no—my eyes didn’t feel dry.

That was always the extent of our conversations about dry eye, which infuriates me now.

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What about eye surgery?

I looked into Lasik in my early twenties. The eye surgeon had me forego contacts and wear glasses for a week, after which he would take some measurements.

During my week of wearing glasses, I found it difficult to go about my normal business. Back then, my normal business included kung fu classes—I was a dedicated martial artist and was training for brown belt in a style that emphasized street fighting.

Kung fu was particularly hard in my glasses, which were so thick I had very little peripheral vision. At one point, in the middle of a sweaty brawl with several others, someone hit my face and knocked my glasses askew. I suddenly realized they could fall off and break. If that happened, I’d be stranded with no way to get home. Without missing a beat, I swiftly took the glasses off, crouched, set them on the floor, and slid them to the side of the studio, where no one could step on them. Then I popped back to my feet and launched myself back into the fight, blind.

This was the main reason I wanted to fix my vision. If anything dangerous really did ever happen to me, like a car accident or a natural disaster, and I lost my contacts and/or glasses, I would become totally dependent on the people around me.

But at the end of the week, the Lasik surgeon said I was ineligible for the surgery. It involves shaving off part of the cornea, but my vision was so bad that too much of my corneas would need to be shaved off. There wouldn’t be enough left. By now, my diopter was around minus 10—worse than Mom’s, and the second-worst of anyone I’d ever met.

But there was another surgery I could do, the surgeon told me. It was called Visian ICL, and was specifically for patients like me who had exceptionally bad vision. Similar to cataract surgery, Visian ICL involves drilling small holes into the eye and inserting an artificial, permanent contact lens over the real one—ICL stands for “implantable contact lens.” (In cataract surgery, before the artificial lens is inserted, the biological lens is removed.)

I was interested, but Visian ICL is far more expensive than Lasik. At the time, it was around $5000 per eye, and it wasn’t covered by insurance. I resigned myself to wearing contacts for now.

Years later, in my thirties and with better income, I began investigating Visian ICL again. I made a list of clinics in the Pacific Northwest that performed the surgery—there were only a handful of them. I once again wore my glasses for a week so I could have measurements taken at one.

Nowadays I was no longer a martial artist, but I still disliked my glasses. Without my peripheral vision, driving felt less safe and everything looked distorted. My glasses made me feel cut off from the world.

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Dry eye is so much worse than it sounds.

In the midst of my surgery research, an unwelcome change occurred.

One evening, my husband Ron came home from work and said my eyes looked bloodshot. I realized they’d been burning all day; I hadn’t noticed till now. Worried, I made an appointment with my optometrist. I’d seen him just a month earlier for an annual exam, and back then, everything had been fine.

But now he said I was showing symptoms of dry eye.

He sent me to an ophthalmologist, and for the first time, I learned what dry eye actually is. It had always sounded like no big deal, just a little dryness. Now I realized that was totally wrong—I had a permanent, irreversible condition that was dramatically reducing my quality of life.

The burning in my eyes had continued and worsened in the weeks leading up to this appointment. I was constantly uncomfortable. When I awoke in the morning, my eyes were desperately scratchy and painful, as though they were filled with sand. They often burned throughout the day, too. Only squirting them with eyedrops provided any relief, but I needed the drops hourly.

The ophthalmologist informed me that I could no longer wear contacts at all. Ever. There were various eyedrops and treatments that might do more to help this scratching and burning, but none were fully FDA approved, none provided permanent relief, and all were very expensive, ranging into the thousands of dollars per year. Over-the-counter eyedrops would alleviate the pain, but I’d have to continue using them throughout each day, probably forever.

The best thing I could do, she went on, was to spend twenty minutes every day with a heated eye pack over my eyes, then gently massage my eyelids to loosen the oil that was stuck in my oil glands. (My eyes were producing enough tears, but not enough oil. I’ll explain this more in my next post, which will be all about dry eye.)

All this news left me greatly distressed. For the past several years, I’d been struggling with ulcerative colitis, a gut disease that had upended my life. Now this too? I already spent so much time on my health—time cooking all my food from scratch, making sure to exercise every day, and getting enough rest. Now I’d lost another twenty minutes a day to caring for this new condition.

And even if I did everything I could, my eyes might still often be in pain.

I hated the little plastic eye droppers that were accumulating on all my counters and in my pockets and bags, a trail of plastic following me everywhere, evidence of this new, near-constant discomfort.

What had caused this? The ophthalmologist said it might be linked to my ulcerative colitis—UC patients are at risk for eye problems. But it could also easily have been caused by my lifetime of sixteen-hour days wearing contacts, or my years of all-day work on computer screens, both of which put me at high risk for dry eye.

This was when I became outraged. Because of my terrible eyesight, I had seen many optometrists over the years, and I had always tried to take good care of my eyes and my health. And yet, not one of my optometrists had impressed upon me that I was at high risk for this, and that dry eye is far worse than your eyes just feeling a little “dry” sometimes.

If I’d known what dry eye was, and not just what it was called, I would have changed my behavior long ago. Now, the damage was done, and I’d have to live with it for the rest of my life.

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Learning to live with dry eye

To make things worse, I learned that dry eye made me ineligible for the Visian ICL surgery—or so I thought.

The clinic I’d seen for my measurements was no longer comfortable operating on me unless I could somehow get my dry eye under control. They were worried that my eyes wouldn’t heal properly after the surgery.

This was a huge disappointment. Not only had I lost much of my peripheral vision to my thick glasses, but dry eye was making me more light sensitive. Combined, those two factors meant driving at night was almost out of the question—whenever I faced the glare of cars’ headlights, I was temporarily blinded. It was just too dangerous. The few times I tried it, I was scared, and each time, I vowed never to do it again.

I was used to dealing with health problems, and I diligently found a dry eye clinic in downtown Portland and worked with them to improve my condition. I cautiously tried a few of their expensive, experimental treatments, which I’ll describe in the next post.

In the end, I gained a few additional tips and tricks, but nothing really worked as much as the ophthalmologist’s first suggestions: heat and massage, and over-the-counter eyedrops. Even with these treatments, my dry eye never fully subsided.

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A New Hope—of Surgery

Periodically, all this gave me fits of despair. My dry eyes were making me miserable. But one week, almost completely out of the blue, I had an inexplicable feeling that I should try again with the surgery.

I didn’t know what made this thought pop into my head. But somehow, for reasons mysterious to me, I just knew there was hope.

Following this instinct, I spontaneously called the half-dozen nearby eye surgeons who performed Visian ICL. Most of them confirmed that, like the first clinic, they weren’t comfortable performing the surgery with my severe dry eye.

But to my surprise, the clinic in Lacey, Washington gave a different response. I might be eligible, said the assistant—after all, many cataract patients have dry eye, which is much more common in older people. Those patients heal fine after surgery.

Trying not to get my hopes up, I carefully investigated the background of the surgeon at this clinic and learned that he was very respected among his peers.

I drove to Lacey for an evaluation a couple weeks later. When the surgeon said I was indeed eligible for Visian ICL, I cried with relief.

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Surgery, Part 1

The surgery wouldn’t fix my dry eye, but it would allow me to once again live without glasses. I scheduled it for October 2019.

It would have two parts. First, tiny cuts would be made in my irises, then, a week later, the implantable lenses would be inserted through the cuts. (The lenses are rolled up when inserted, then they unfurl once they’re in the eye.)

On the day of the first phase, I drove Ron and myself up to Lacey, which is two hours north of Portland. At the clinic, they strapped me into a device that reminded me of many optometric gadgets, with my chin on a chinrest and my forehead pressed to a forehead strap. But this gadget differed slightly: behind my head was another tightened strap, which prevented my head from moving.

The doctor pressed a lens covered in gel up against my right eye to keep it from closing when I blinked. He told me to hold my gaze steady on the top of a wand in front of me. Nervous, I focused on the wand’s orange, glowing tip.

Then the machine made a series of sudden, loud slamming noises that sounded, I thought, like a guillotine: Bam! Bam-bam! With each slam, a bright green light flashed and I tried not to jump. I could see why the head strap was necessary.

Just like that, the first cuts had been made. They had passed quickly, and now I felt a new pressure in my eye, as though the inside of my eyeball was filling with fluid that needed to be released. It was uncomfortable. I had been belly breathing to quiet my nerves, but the discomfort was growing, and I began needing to focus more to stay calm. I allowed my deep breathing to become audible, blowing air out slowly through pursed lips. The surgeon and his assistant could hear me; I tried not to be self-conscious.

There were a couple more loud, well-aimed slams. To my relief, the pressure in my eye eased.

Soon the process was repeated for the other eye. This time, since I knew how uncomfortable it would be, I needed more belly breathing to avoid becoming fearful.

I’d been under the impression this was an easy procedure. Did other patients breathe this audibly to keep themselves calm?

After several minutes, it was all over. “You did great,” the doctor said, smiling his perpetual cheerful smile. He was a tall, fresh-faced man with a jaunty demeanor.

He gave me eye drops to use four times a day. I put them in now, and whatever was in them ran down the back of my throat and gave me a metallic taste in my mouth. I hoped none of the drug was reaching my sensitive gut.

The appointment had been brief, but I suddenly felt exhausted, which was why Ron had come. As he drove us back to Portland, I also felt slightly traumatized. The cuts had been minuscule, but they’d been made deep in a part of my body that was unused to being touched by the outside world. It felt as though my whole body now wanted to curl up and recover.

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What will it be like to be able to see?

A couple days later, though, I felt better. Excited about the surgery, I wrote about it in my journal.

Just now, I lay on the sunroom couch after a nap with my glasses still off and watched the soft-blurry shapes of the leaves moving outside in the breeze. There was a beauty to them, like abstract art, just the colors, no hard edges.

I tried to absorb the reality that in a few days, that blurriness will be gone, probably for the rest of my life. I feel sentimental about it. I cannot remember the time, before age five or so, when I could awake from sleep and be able to see. When I grope my way to the bathroom at night, it is not only the darkness but this blurriness through which I am groping. When I’m lying next to Ron, I can’t see him unless our faces are right against each other. When I awake in the morning, the world is a blur until I put my glasses on.

I wonder if, for years after the surgery, I will find myself automatically reaching for glasses I don’t need each morning.

I’m so sick of wearing my glasses – every other day or so, I notice them pinching my nose or just blocking my peripheral vision, and I get excited anew at the idea of being able to see without them. I’m really excited about the surgery. But I do feel a bit sentimental about my blurry vision, too. Like my nail-biting and my skinniness, poor eyesight has just always been a part of me. It’s like losing a little piece of my identity.

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Surgery, Part 2

On the day of the surgery, Ron was teaching, so I drove up to Lacey with Mom. After a long wait, they prepped my right eye with some numbing drops, which stung terribly because of my dry eye. I waited another long spell in the prep area, blindly listening to counselors talk to cataract patients behind curtains.

Finally, someone led me to the operating room. I didn’t have my glasses—I realized I would never need them again!—and I groped my way onto the operating table. The doctor put in more numbing drops, then he draped me with a plastic sheet, spreading it around my head and torso like a tablecloth. A little patch was cut out directly over my eye, and his blurry form once again appeared above me.

Without further ado, the surgery began.

Needless to say, it’s strange to have your eyeball operated on. Your eye is held open, so you can’t help but see everything, although for me it was all a blur. The surgery was quick and painless, just gentle pressure for a few minutes. What I saw was mainly a trio of three bright white lights that drifted around. At one point, the lights came into clearer focus—the insertion of the lens! I thought.

The doctor finished by injecting something that he said might give me “a little headache.” Within five seconds, I realized this had been a massive understatement.

It felt as though an icy fluid was suddenly draining into my inverted skull. I could feel the cold, piercing pain draining down, as if it was filling my whole brain cavity. The first eye’s surgery was now over, and I was being instructed to sit up and wave to Mom, who’d been watching from the viewing gallery. I was supposed to be happy, because I could now see more clearly out of one eye. Instead, I was totally consumed by a sudden, splitting, nauseating headache.

I managed to sit up and throw a pained smiled and a thumbs-up in Mom’s direction, but I had to quickly focus my eyes back on the floor.

I staggered back to the prep area to await my second surgery. My two eyes were being operated on separately to prevent infection; the team needed to clean the OR between rounds. I kept my eyes focused downward and my hands clasped in front of me, just breathing through the pain.

I’d been given an extra-strength Tylenol. After twenty minutes, the headache finally began to subside.

Then the whole process was repeated for my left eye. Once again, afterwards my headache was so nauseating it consumed all my focus.

By now I was in the business of enduring, I would write later in my journal.

I had not worried much about all this discomfort—I knew it might occur, but I’d felt unconcerned, because I also knew it would pass and be worth it, and there was no point worrying about it in advance. Now it was here, and I knew my job was just to endure it till it passed.

I would need to come back to the clinic in two hours for a post-op, and to stay the night in Lacey for another check-up tomorrow. Mom drove us to a restaurant while I lay back in the passenger seat with my eyes closed, trying to keep from throwing up. She went inside and ate lunch while I stayed in the car, rested, and slowly ate my own premade meal, which seemed to settle my stomach. I kept my eyes closed as much as possible.

I was so exhausted and nauseous that I couldn’t yet enjoy my new vision. And it wasn’t really there yet—the surgery wouldn’t fully take effect for a day. For now, whenever I did dare to glance up, things were still largely blurred, although clearer than they would have been before the surgery.

At the post-op, I mostly sat in the waiting room with my eyes closed, my head resting against the wall behind me. But my nausea eventually began to subside, and when I stood at the counter to check in, I glanced up and caught my breath.

Behind the woman checking me in, the wall held a large mirror. I was startled to see myself in its reflection.

“Oh my gosh, there’s my face!” I exclaimed. My vision was still blurry, but I could see better than ever before without glasses. A year-and-a-half had passed since I’d been diagnosed with dry eye, and in all that time, I’d never seen my face without my glasses on. I almost didn’t recognize myself. My eyes, which had looked tiny behind my glasses, now looked bigger and bluer than I remembered. I smiled in wonder.

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Recovery

Another wave of terrible nausea returned on the drive to the Days Inn. Mom checked me in and I hauled my stuff out of her car, stumbled to the door, and presented my ID while barely looking up at the woman behind the counter. In my room, I kicked off my shoes and climbed into bed with my clothes and coat still on.

Mom had to return to Portland; I’d be taking a train home tomorrow. I lay in bed miserably all evening, unable to eat or do anything else. My vision was still too blurry, and I was too nauseous, to read or watch TV, but I also wasn’t tired enough to sleep. I just lay there for five or six hours, enduring, then eventually managed to change clothes before crawling gratefully back under the covers.

Around 2:30 am, I awoke. The nausea was gone.

Immensely relieved, I sat up. I was still tired, but my sleep had been thrown off by lying around for so long. I watched Star Trek: Voyager on my iPad, happy to be feeling better.

Things continued improving as the morning progressed. At sunrise, I began texting my family updates: my near vision was still blurry, but things in the distance were beginning to clarify!

I ate a prepacked breakfast, checked out of the hotel, and walked to the post-op appointment with my belongings. It was a clear, beautiful fall day. Orange and red leaves littered the pavement in the clinic’s parking lot. I sat happily in the lobby for twenty or thirty minutes before my appointment, just gazing out the window, mesmerized by the colorful leaves.

Even on the most distant trees, the leaves looked crystal clear.

I learned from the doctor that I now had 20/15 vision. Elated, I caught a Lyft to the train station. Describing the drive later, I would write:

In the Lyft, the world was in high def, like those impossibly clear TVs on display at Best Buy. It was like Blu-ray, with clarity in multiple layers, the distant trees moving behind the also-clear trees in the foreground, sort of flattening both layers and making them look fake. At the train station in Portland, waiting for Lanny to pick me up, I again stared contentedly at the seagulls wheeling in the evening sky, so clear.

Just as the surgeon had predicted, I recovered perfectly from the surgery. After a lifetime of bad eye news, something had worked out at last. I still had dry eye, and now, two years after the surgery, that is still a daily struggle. But at least I don’t have dry eye and poor vision. I no longer need glasses and contacts; one of the many complexities of my self-care has eased.

A week and a half after the surgery, I described it in my journal. It was still making me happy every day.

My vision is better than ever before, so crystal clear in the distance and fine up close, too. My peripheral vision has returned, and driving at night feels so much safer! I hadn’t realized how much of the problem was my non-anti-glare glasses. That was a welcome surprise! And I’m of course still getting used to being sighted when I wake up—I always automatically reach for the glasses on the nightstand, then realize they’re just reading glasses and I can already see!

Yesterday was the first rain in weeks, and the first since my surgery a week and a half ago. On a walk, I realized I no longer needed a cap to protect my glasses from getting wet. I lent my wool cap to Ron, who hadn’t brought one, and wore one without a brim instead. It felt amazing to feel the drizzle against my face and still be able to see.

I don’t miss my blindness at all. 🙂