Watching the 1978 version of the movie ICE CASTLES has always been an emotional experience for me. It has its faults, such as a problematic romantic relationship the lead character has that is portrayed as normal, but otherwise it is beautifully acted, with emotive music and dialogue. And that tough-love scene between the ice-skater protagonist and her mentor/coach (played by the amazing Colleen Dewhurst) after the former goes blind always brings me to tears….
As does the scene where the girl has learnt how to skate again and performs at a competition despite only seeing very blurry shapes and shadows.
I have watched this movie so many times over my life, as has my twin, but this time it was different. This was the first time I watched it again since becoming so blind in the last two years that I, too, only see very blurry shapes and shadows when looking at anything more than a foot away from my face. It hit me hard: what they show this lead character seeing on the ice, after going blind, is exactly what I see now. Or, rather, what I don’t see.
I fell apart. Not necessarily in a bad way, but the starkness of the similarity in our sight now was incredibly confronting to me. And the protagonist’s grief when she realized this is how she would always see the world is something I can identify with, except I feel like I went through all her emotions in slow motion. That I am still processing them. The fact that this movie could accurately capture the experience of going blind was never quite so apparent until now. This fictional movie suddenly felt oh so real.
I was told recently by someone who knows me well, and talks to me daily, that the biggest change they have noticed in me in the last few months is that I now recognize I am blind. That might sound weird, to not realize it earlier when I have always been viewing the world with these flawed eyes of mine, but until my surgery and follow up diagnosis I always just saw myself as having a condition that will be fixed. My inability to focus through the blur and doubles was not originally going to be permanent, so why label myself as blind. Then the condition worsened dramatically in the last two years because of my thyroid issues, the surgery was unable to repair my sight, and it took me almost a year to get my mind around my second form of blindness being diagnosed.
I look like I see better than the girl in the movie, because I have had years to adjust to increasing blindness and time to learn how to instinctively move around in my environment better…but the sudden deterioration in my sight has meant I have had to work out what visual aides I need to help me perceive what I cannot see. Which means accepting that I am blind.
I suppose it is rather bittersweet and ironic to say I will never see this film in quite the same way again. It almost feels like I lost my innocent ignorance in quite the same way the lead character did. And that is not necessarily a bad thing. Like the girl in the film, I can still have my happily-ever-after future. It will just look a little different.
I am the perfect example of how your life can change, quite literally, in a blink of the eye. I know it has taken me way too long to update everyone on the status of my eyesight following my eye surgery on March the 27th, 2020. I could say it was because I was not meant to use the computer for some time after the surgery (true), or because I was experiencing a thyroid storm at the same time and then had radiation to kill my thyroid (which I reacted badly to), then I caught Covid-19 (which landed me in the hospital again), and then I was just too sick and exhausted for months after to update everybody on the complicated status of my eyes…. And all of that would be true. It was a struggle just to work a few hours a day, let alone write a long blog post. But it was mostly because I needed time—months, it turned out—to digest the complex news I had received about my eyes from Dr. Brian Boxer Wachler, my surgeon in Beverly Hills, California, and then from my new ophthalmologist in Myrtle Beach, South Carolina, where I had my post-surgery follow-up appointment. I had to process the news on an emotional level first before sharing it with everyone else. It’s been, quite frankly, difficult.
The truth of it is, I am still legally blind. Very legally blind. Despite going to the best surgeon in the field to treat my Keratoconus—an eye condition where my corneas stretched into cone-like protuberances because of a significant lack of collagen bonds to maintain their spherical shape—Dr. Brian was unable to restore my vision, even with his expertise and the efforts of the GoFundMe fundraiser. We did manage to halt the deterioration of my eyesight through cross-linking, which was a big part of the procedure, thus saving my remaining eyesight, but I had thought my vision was going to be partially or significantly restored, too, and the loss of that best-scenario outcome has been incredibly hard to process, emotionally.
The fundraiser amount raised was $16,141, and after GoFundMe took its cut I had $14,969.41 to put towards my eye surgery. The procedure amount alone was around $19,000, so adding in travel costs, an expensive week’s stay in LA, lost income, petsitter costs, food, ubers and some unexpected expenses in the days following (including needing an $800 radiation treatment immediately after my return to kill my thyroid), that one week cost me around $23,000. I had intended to try and save the difference for the surgery from my own pay, or at least some of it, but my procedure was delayed by over two years of significant and expensive health hurdles (including the worsening of my vision), so it was private donations on top of the GoFundMe fundraiser that helped me reach my final goal.
I am not at all exaggerating when I say that it was my donators, and those who shared the link of the fundraiser again and again, who are the only reason I have kept what sight I still have, as well as helping pay for my expenses in the month afterwards when I was too sick to work. At the rate my Keratoconus had advanced in the past two years, within another year or two I would have lost the ability to do a lot of day-to-day tasks by myself. More importantly, I wouldn’t have been able to do my job anymore had the cross-linking part of my procedure not halted the deterioration of my corneas, and that would have devastated me. I cannot thank every one of the donators enough, for helping me have a surgery I would have otherwise had no ability to afford.
So how did the surgery go?
The week of my surgery started off a lot more unusual than most. The Covid-19 pandemic had just been officially declared, and so most cities and states around the United States were effectively closing down. This greatly impacted my travel arrangements, necessitating a change in flights, and in the days leading up to my surgery there was a huge fear my procedure would be postponed yet again due to my flights being canceled. I also had my thyroid scanned just before my flight, and two hours before I was due to fly out of Myrtle Beach I received an urgent call stating I had to have my thyroid killed by radiation that same day, because the scan and blood test results showed my body was building up to another thyroid storm. (Thyroid storms are eighty percent fatal.)
I told the hospital they had to wait. While I valued my life, it wouldn’t be worth much if I lost all functional sight. I had already survived two thyroid storms and who knew when this pandemic would end? What if I couldn’t reschedule the surgery in time to save my eyesight? I’d already had to postpone the surgery twice; I was starting to believe this procedure was cursed. The fear of going blind was more significant for me—more tangible—than maybe catching the virus, and I could always take myself to a hospital in Hollywood if my thyroid symptoms got worse….
So I arranged with my Myrtle Beach hospital to have my thyroid radiated and killed the day after I returned from my eye surgery, then immediately left for the airport, trying not to worry about yet another significant medical concern. I was told that because my thyroid was so aggressively hyper they were going to give me a huge dose of radiation, which meant having to quarantine myself in a hotel room for four days away from everyone else following the procedure. They didn’t want to risk keeping me in an isolation room in the hospital during the start of the pandemic and I couldn’t go home because the radiation would likely kill my dog’s thyroid, too. Suddenly the eye surgery wasn’t the only medical hurdle looming.
My flights to Los Angeles were surreal. The airports were all but empty, and because it was early days in the pandemic, very little was known about the virus, so everyone wore masks and seemed highly suspicious of each other—literally avoiding each other like they had the plague. It made it easier for me to travel with my eyesight issues. No one was bumping into me, and I wasn’t tripping over countless rogue bags or children. Since there was a grand total of six people on my main flight, we even had multiple rows of seats to ourselves.
There were flight delays, per my usual luck, and if it weren’t for my uber driver, Caleb, my day would have gotten a hell of a lot more stressful. We turned up at my hotel to find out The Hollywood Roosevelt had closed down completely, but they had not notified me via phone or email, and they still had my money! I had booked a great room at a fifty-five percent discount, paying upfront, so staying there was going to be a highlight during an otherwise intimidating week. Not only did I have to suddenly find another hotel that would take me in during a pandemic, I had to cough up another $900 for a new room for multiple nights. Luckily Caleb wouldn’t leave me stranded, standing on a dark street trying to google hotels, because I couldn’t even go to a restaurant to work out where I was going to stay while I ate dinner, and all other public venues were closed. Instead, Caleb had driven around the city—at no charge!—until he found a hotel that was open, then waited until he was sure I got a room.
It was kindnesses like that that kept me going through the rest of the week. When I turned up to my pre-surgery consultation, I had a lot of hope and expectations, only to soon have them dashed. Before I even met Dr. Brian Boxer Wachler at his practice, one block from Rodeo Drive in Beverly Hills, I had my eyes scanned and topographically mapped again by his people. It made perfect sense, because it helped the surgeon to have the most current scans possible to create a more informed surgical plan.
Well, instead of that process being an automatic, non-issue event, it led to Dr. Brian informing me, sadly, that my eyesight had deteriorated too much since the last scans he had received from me. My previous scans had been performed on the 25th of August, 2017, and in the nineteen months following that date my Keratoconus had worsened to such a degree that my corneas were too thin across the top of my eyes to support Intac implants. While the cross-linking part of the procedure was the most important and timely part of my surgery—the results forever halting the progression of my degenerative disease—the implants were what was going to improve my sight and I had been so excited to see better.
An Intac implant is the insertion of a rigid plastic ring two thirds down in the corneal layer of the eye, stretching a cone-shaped cornea back down into a more natural spherical shape. My condition is much more advanced than his usual case, so I never expected the Intacs to be able to completely flatten my steep cones, but any decrease would have restored a significant amount of vision, even if only by increasing my ability to then fit Scleral (glass) lenses to see better.
Dr. Brian told me that I had an important decision to make. He informed me I could not have a full ring of Intacs inserted to reshape my corneas, thus significantly lessening the amount of doubles and distortions I see. But he said I could still have partial implants inserted into the bottom of my corneas, across the thickest peaks of my off-center cones, which might be enough to reshape my corneal bulges to better fit Scleral lenses. This was not a result he could guarantee, however, as you usually need the tension and balance from an entire symmetrical Intac ring to stretch the corneas back into less-steep curves. Since more than half of the fundraising money raised was to cover the cost of implanting the Intacs, and he could not guarantee the results of a partial implant, he wanted me to be aware that I could be paying a lot of money to literally see next-to-no results.
I greatly appreciated the fact that Dr. Brian fashioned an unexpectedly tailor-made procedure at short notice to try and help me regain some sight. I figured any visual gain from a partial implant, even if only tiny, was worth the expense. I also reckoned that my fundraiser donators would agree. He showed me a rough digital image of how he would position my implants—making an interesting observation that both my Keratoconus-distorted corneas were oddly mirrored in their topographical aberrations—and we formulated a plan for my surgery the next day.
To say the procedure was confronting is an understatement, including a dramatic allergic reaction to the opioid painkillers I was given later in the day. Dr. Brian and his staff looked after me expertly. I had the intacs inserted into my eyes first—which, I might point out, you are completely awake for. (Luckily, I had told them not to give me strong painkillers ahead of the procedure, so my bad reaction to opioids only happened after my surgery, not during.) While the procedure itself was uncomfortable, it was also fascinating, because I could actually see and feel most of what he was doing. It kind of felt like I was looking through a microscope to watch my own surgery, Dr. Brian’s tiny implements were in such close quarters visually. I could even see the start of the insertion of the implants happening out of the seeming “edge” of my eyes.
With the amount of tugging of the eyeball that goes on, to nudge the implants into the right place, I was impressed by how much work goes into pushing those tiny Intacs into their new home, and I was not even getting full rings. Sadly, unlike other patients I had seen on YouTube videos immediately following their procedure with Dr. Brian, I did not immediately see better like a miracle had just happened. Even though the cornea takes some time to fully re-shape after the procedure, usually the impact of the ring implants are instantaneous, but if anything my sight appeared a little worse.
I then went into another room to halt the progression of my Keratoconus by having the cross-linking procedure done, which increased the collagen bonds in my eyes by three hundred percent. Dr. Brian’s patented version of the cross-linking procedure is called Holcomb C3-R and is thankfully non-invasive. Applying his proprietary Vitamin B2 formula to my corneas, he then activated it with a FDA-approved UV light. My eyelids had been pulled wide and held into an open position with a lovely little torture device, and someone came into the room every ten minutes to re-baste my eyes with the formula, like I was a roast chicken on a rotisserie. The light was blinding, but the procedure’s success rate is 99.3 percent and forever prevents my corneas from continuing to stretch into steeper cone shapes, so who was I to argue about how much the procedure stung?
So why didn’t I post about the surgery results soon after the operation?
In the days that followed, it became clear that my sight had not improved, as Dr. Brian had suspected probably would be the case. I was starting to process the grief that I might never get my sight back—at least not with current technologies or procedures available. I couldn’t get transplants, because of Reasons, so this had been my only opportunity to improve my sight. The one hope I had left was that my corneas were re-shaped enough by the partial Intacs to enable me to wear Scleral lenses, the second goal of getting the implants.
I was also really depressed about disappointing the donators of my fundraiser who had worked so hard on my behalf to raise money to pay for this procedure to help improve my eyesight. If anything, the duplications in one eye were more distinct now, which seemed like a really negative result for such an expense. So I was experiencing a lot of guilt and was in a lot of pain while I recovered (migraines, eye-strain, Covid-19 aches, radiation burn) and I was not going to know until my post-operative follow-up appointment in Myrtle Beach how successful the surgery had been. I figured it was better to focus on healing, and then update everyone when I was feeling better and had all the facts, because surely it could not get any worse.
Until it did.
I was diagnosed with a second form of blindness.
As a result of the pandemic, my local ophthalmologist’s office was closed for a couple of months following my surgery, but I finally got my anticipated/dreaded follow-up appointment on June 19th, 2020. Only one patient was allowed in the building at a time, and someone took me through all the rooms to scan my eyes on the many machines that measure focus, clarity and all the topographical anomalies of my eyes. I told the lady doing the scans that, based on previous experience, it will take some of the machines more time than normal to spit out results to her because I had a lot of trouble trying to physically focus my eyes on the tasks the machines want me to do. I didn’t realize how significant my regular disclaimer was until I met the ophthalmologist.
When Dr. Thomas Weshefsky came into the room he was overly chipper. By which I mean, too-overly-compensatingly-happy-sounding-because-he-had-bad-news-to-give-me chipper. I presume he had looked at the results in his office before coming into the exam room, and was working out how to unload new results about my eyes without shocking me—or upsetting me—too much in the process.
The immediate indication that he already understood the extent of my blindness, when very few others can fully grasp how little I see, was when all my results were put up on the display about three feet away from me—a big screen, to specifically show patients—he said to his assistant, quite clearly, “Oh, Lezli will not be able to see that at all from where she is sitting. Please print the scan results and bring them over to her.” The scan results for each eye included an image of a boat on a beach that had been altered to depict what I actually see, which wasn’t much–you could not even see it was a boat.
Dr. Thomas then shared with me two things of note. One, these scan results showed him that Dr. Brian had done the most precise and surgically flawless Intac procedure he had ever seen, proving his skill as an expert in Keratoconus treatments by tailoring this procedure to my very unique eyes. And, two, despite Dr. Brian’s beautiful work in reshaping my eyes to actually be able to wear Scleral lenses—I remember Dr. Thomas likened his talents to Picasso—it would not help me at all because I had another form of vision impairment that, combined with my advanced level of Keratoconus distortions, would prevent me from wearing any prescription lenses.
“You have always been blind.”
I was shocked. Wait! What?
Apparently my eyes never developed any of the necessary internal structures after birth to be able to focus. When a new child is born, their eyes goes through a calibration process over their first formative months and years to develop clarity and sharpness and depth perception. After those structures are developed, the internal appearance of their eyes change on scans, represented by different shapes and colors, and certain connections are made with the brain. Any deviations from the norm are called “aberrations.” Dr. Thomas said the interior of each of my eyes looked like a veritable slushy of aberrations on the scan results. More than he normally sees in the one person—too many to discuss in the one appointment. From my understanding of what he was saying, the aberrations are abnormalities in my eyes, either in the formation of an irregularity, like an astigmatism, or in the absence of important structures, ensuring I was never able to develop my vision.
When they actually tried to work out a prescription lens for me they found it impossible. I was looking through their machine and they tried every lens slide combination imaginable to improve my sight, and it was like they were just swapping out one version of blur and distortion for another. I still couldn’t read anything on the chart and my eyes would just water constantly from trying to look at the backlit screen of letters with the ever-altering versions of distortion. In fact, it was harder to see with any prescription lens than without. I told them I had no ability to focus through the doubles to read. I could not focus, period. I was told that that was because the combination of the duplications from my Keratoconus on top of the extreme blur from my birth aberrations confound my brain too much. I could guess some letters, but they were only guesses. There is just too much going on with my eyes for me to be able to process.
The eye technician told me to take a break to rest my eyes. Then, from what I could tell, they used data from my scans on a tablet to generate an image of how I see the eye chart as if they were looking through my eyes. They appeared to be using a program to try to improve a digital image of what I see by selecting different virtual slides to change the prescription parameters. As they changed the virtual slides on the tablet, I could hear the physical slides automatically change in the real machine, even though I was no longer looking through it. After a minute or two of switching slides in varying increments, they said my eyes defeated their system; they could not improve my sight at all. This means that because of my childhood aberrations and Keratoconus, I cannot get any form of prescription glasses or contacts that would help my sight. I already knew (for years) I was really blind without glasses and lenses, but it is only when I was unable to improve my sight through contacts and glasses that I realized I was actually classified as blind legally.
When determining prescription lenses, your eyes are given numbers based on your visual limitations. It is important to know how the number system works. A zero number would mean you need no correction through the use of lenses—you see perfectly. So the farther away the number gets from zero, the more correction you need. To determine what direction that correction should go—either to help you with seeing far away or seeing up close—there will be a plus or minus added to the number. When a plus sign is added before the number, you are farsighted (you have trouble seeing closer objects). When a minus sign is added before the number, you are nearsighted (you have trouble seeing distant objects). You are legally blind if your prescription number is -2.5 or below, which mean you see 20/200 or worse. That means that how well you see twenty feet away is how well a normal-sighted person can see two hundred feet away. More specifically, you are only classified legally blind if after correction with glasses and/or contacts your vision is still 20/200 or worse. Since my numbers are well into the negative—significantly worse than -2.5—and no prescription combination can ever clear up my sight, that is why I am officially legally blind.
After they were unable to settle on a prescription setting for me, the ophthalmologist leaned in, grabbed a hold of my hands, and said that there are two things he loves about his job. One, he gets the benefits of working as a specialist in the medical field (great pay), and two, he can perform miracles every day. He can give sight back to his patients through prescription glasses or lenses, or through performing surgeries to repair or alter the eyes, and he gets the emotional payout of knowing he was able to significantly improve his patient’s quality of life.
He said in his entire career he has only met two people he cannot help at all, and I am one of them. He was rubbing my hands as he said this, trying to soften the blow with a kind touch, and I managed to hold the tears back as those words hit home. I had already been told by Dr. Brian that my surgery could not undo the damage done by my Keratoconus, when at first it was believed it could, so I had readjusted my expectations to maybe having a fraction of sight returned through the wearing of lenses. It was why Dr. Brian had done so much work with the unique positioning of my Intacs—to try and give me a chance of wearing scleral lenses and some hope of visual improvement, even if miniscule.
To be told, effectively, that I will never see more than what I cannot currently see, was quite frankly heartbreaking. I think if the carrot had not been dangled in front of my face twice—the possibility of improving my vision—the news wouldn’t have hit me as hard as it did. It was the extinguishing of hope that broke my heart, not the reality of how bad my sight is. I was already living that reality.
The ophthalmologist then went on to explain that the other patient he had been unable to help also had a high amount of “aberrations.” Since the aberrations were believed to be a result of defective structural development in our eyes during our formative childhood years, it is therefore irreversible and there is currently no treatment for this amount of internal aberrations. That is, unless a very talented ophthalmologist in Texas is able to create the technology to imprint an inverse representation of my aberrations onto a scleral lens, if I understood what I was being told correctly. The technology is currently well beyond our scientific ability to create, but I will be introduced to this particular specialist in the near future, just in case.
If I’ve had these aberrations from birth, how could I not know?
You can imagine my shock at being told I have always been legally blind. Dr. Thomas was patient enough to explain why I didn’t previously recognize this fact. The reality is that most people’s childhood memories are often hazy—they are hard to visually recall. The details literally fade over time. So my blurry eyesight was misremembered as faded memories, or just never focused on.
As a child you have no concept of blindness, unless told. I was mature enough to recognize I had significant sight issues by my teen years, because I was unable to read school blackboards and text books that were suddenly filled with a lot smaller words and less pictures than those of earlier education years. I just assumed my sight was getting worse, rather than the reality of my schoolwork becoming a lot more complicated to read for someone with my always-significant sight issues. As the ophthalmologist said, had I have been diagnosed a few years after birth my parents would have been told, “Your daughter is blind. She only sees abstract shapes and shadows and colors.” And this is before I developed keratoconus, which (starting in my teen years) further distorted my view of the world.
Dr. Thomas also said the unusual amount of “aberrations” I have can be hard to catch early on because kids with my eye issues are often just deemed more clumsy, with messy handwriting and the like. I could still see shapes and follow them with my eyes; I just had no ability to see finer details. When it came to actions like writing, I would sometimes write above and below the lines and have uneven margins, and my word formation could look quite messy. I went back through my school reports after my diagnosis and for years they were filled with comments about me having great academic aptitude but that I needed to work on my presentation and spelling errors. The assumption was that I was “bright” so in my intelligence I rushed my schoolwork and it was consequently messy. Well, my twin was equally quick at finishing schoolwork, and her writing was a work of art—so perfect. (It still is.) I remember telling my folks and teachers I was trying so hard on my schoolwork, but it was only when I started doing my homework on the computer that I stopped being chided on presentation.
Basically, I had no concept I was blind. The blindness didn’t happen at an older age where I could tell there was a difference in my sight, before and after, so I had no reason to raise any red flags with my parents. Since I had these aberrations from birth, my ophthalmologist said my brain instinctively helped me accommodate to what I lacked, by adapting to help me work around my limitations. The adaptation wasn’t perfect, hence the writing messiness and overall clumsiness, but I did unconsciously mask my limited sight from others, and even myself, until I developed Keratoconus, too. As a child, I assumed everyone saw how I did, because I mostly did what everyone else did, to the best of my ability.
I also have a twin.
This is an important and unique factor. Not only is Ellen my other half, but I was always doing everything with her as a child, and we were so close it was as if we moved together as one. While my parents might have noticed subtle indications I had sight deficiencies if I was a lone child, the ophthalmologist theorized it was masked because as a twin it was often our actions being noticed collectively, rather than hers or mine separately. My parents also might have spotted a red flag or two if I was directing my gaze their way more often, but they were missed because I was focusing so much of my attention on my twin. Therefore, learning off my sister, with her, likely further concealed my blindness, or helped me cope with it better.
People also get so used to their core environment. It took me a few months to get used to my new house—to stop walking into doorframes and stubbing my toes on absolutely everything. Like my childhood home, or schools, once I know where everything is, I walk around as if I can see where everything is, when really it is just my brain telling me, “I got this, I remember where everything is now. Just follow my lead.”
As Dr. Thomas pointed out, if another person suddenly woke up with my extreme blurriness and doubled sight, they would be walking around like someone who sees almost nothing. They would walk into furniture and they would have their hands out in front of them, touching everything to feel where it was or to help them work out what they were seeing. No one would have any doubt they were blind. They would also be incredibly scared and need a lot of outside help adjusting to their new world. This is because they haven’t had a lifetime to adapt to their limitations.
However, for me, I grew up with one of my forms of blindness. I lived my life. I didn’t let it hold me back because I didn’t know my lack of sight could hold me back. I just…adjusted, day by day. I was a happy child. This distinction needs to be made, because there is no reason for my parents to ever feel bad for not being able to see what I see—or rather, didn’t see. How could they? If anything, had my blindness been known as a child, it would have separated me more from my twin. I would have been treated differently to her—maybe even had a different schooling situation because all the caring people in my life would’ve been trying to make it easier on me with my vision limitations. I much prefer the childhood I did have. One that was blissfully normal, with a twin I did everything with. I wouldn’t change that for the world.
What is it like living with two forms of blindness?
The biggest hurdle for me is not my childhood and no one knowing I was legally blind back then. It is adjusting to how much my eyes had deteriorated in the nineteen months before my surgery with Dr Brian to halt the progression of my Keratoconus. As a child, I only had my internal eye aberrations to deal with. Sure, they were significant, but they were consistent. Having a second eye condition altering my corneas, adding an ever-changing kaleidoscope of distortions and duplications to what I see, means my brain is no longer easily able to adapt. My increased blindness means my work for Arc Manor Publishers has been impacted and we’ve had to change some of my job parameters moving forward. (I can still be a content editor, for example, but I will never be a copyeditor again, because I cannot see every typo.)
Thankfully, I have an amazing boss (as evidenced by the fundraiser Shahid organized for me to help me raise the money for my eye surgery!), so my job is secure, even if I am not yet back to working full-time. The scary, intimidating reality is that up until around 2018 I only saw around seven duplications due to my Keratoconus. (Believe me, that was bad enough.) In the last couple of years that increased dramatically until I was seeing forty images of the moon when I looked up at the night sky. (Looking at the moon is one of the easiest ways for someone with Keratoconus to evaluate how many duplications they see.) Like anyone suddenly losing vision, the sudden deterioration in my eyesight was a shock to me, despite how well I had adjusted to my limitations since birth.
One night, when I went outside and looked up at the moon, I was more keenly aware that the world around me looked like an alien landscape as a result of my eye condition. The duplications and distortions have become such a normal part of my reality that my instinctive reaction was to go grab a camera and take a photo to show others how I see the moon. Then I realized how stupid that thought was, because the camera would capture how a normal person sees the moon, not how my unique eyes see it.
But that did give me a great idea. I sat outside with a piece of paper and painstakingly sketched how I saw the moon, showing the positions of the many duplications and noting how each version of the moon looked (some were more ghostly, some sharper, and some were more warped out of shape than the original). Then I took a photo of the moon and re-created my drawing in Photoshop, duplicating my shot of the moon again and again and again, to position phantom moons into the arrangement I see in real life, adding liberal amounts of blur and light glare to make the image more accurate. For the first time in my life I could show people a decent representation of how I see the world. Or, at least, the moon.
Dr. Thomas was very excited to see my Photoshop simulation. His computer program had created its own image of how my eye conditions distort the light vectors for each of my eyes. The warped shape their scans created for each eye was their technical, scientificrepresentation of how my misshaped corneas refract light, and I instantly recognized that my light glare pattern for each eye matched the shapes their computer had generated. But the image I created of the moons in Photoshop was my detailed representation of what I physically see and the ophthalmologist’s excitement came from the fact that the positioning of the moons and distortions in my image very much matched the overall shape and line angles in his computer-generated images. He said for the first time someone had shown him a visual representation of their scan results.
So where do I go from here?
One of my most confronting realizations is that I now need a blind cane when out and about in places I am unfamiliar with, especially if I’m in busier or harder-to-navigate locales or traveling alone. That development, and two separate ophthalmologist’s dropping their bombshells of permanent blindness, really broke me for awhile. It felt like I had lost some of my independence and it’s taken me months to even write this, almost as if putting my reality down in words is what makes it real.
I also experience sadness that people can treat me differently when they see me with a cane. I prefer people’s first impression of me be made because of my personality, or my writing, not because of an instinctive reaction to spotting a blind cane. It’s almost as if, in a way, using the cane has made me a little more invisible in its visibility; that some people only see the cane, they do not see me. Because of this, when I first got the cane, I could barely bring myself to use it, I was so self-conscious. As weird as it sounds, I slept with it in my bed, positioned beside me, for several nights, just trying to adjust to it now being a part of my life.
It’s not all doom and gloom. My unique view of the world can be beautiful, when you look at crystals, diamonds or rainbows in duplicate. They become a breathtaking kaleidoscope of color and light. But mostly my limited sight makes life around me appear too dull or glary or indistinct—or all at the same time. It took me months not to feel like a failure for having to start using a blind cane one month before my surgery. It was that mental experience of feeling like I “gave in” to my blindness just before it was to be corrected. And when we then discovered my sight could not be corrected the day before surgery, I felt very vulnerable and discovered there is a grieving process to be experienced when you are told you will not see the world any better than you do now.
I can no longer see walls. I see a splash of color where a wall is, but no substantial physical construction. Walls just look like a blur of color hovering in the air that picture frames float in. If I reach forward to touch a wall, it looks to me as if my hand would pass through it like it is a mist. Except, inevitably I hit plasterboard or rendered brick, and never where I expect it to be.
I can no longer see the grains of sand beneath my feet or the ocean that laps at my soul, giving me comfort. The yellow and blues of a beach still calm and soothe the mermaid in me, which is why I have filled my house with those colors, but I would love to see dolphins leaping in the distance or enjoy the sight of families building sandcastles. Unless something is close to my face, or I use a camera with an impressive zoom lens to bring the images of the world to my eyes through a viewscreen, the details of my surroundings are lost in a misty kaleidoscope of hazy color and duplications. All I see is blurry smudges of yellow and blue, with dashes of other colors thrown in.
I can no longer read any of the books on my shelves. Ever since I was old enough to read, I had a book in my hands, reading it in bed or on the train or over a bowl of cereal. I would devour books, inhaling them as if they were as pivotal as the air I breathe. They were the reason why I wanted to become a writer. Or rather, the wonderful transportive worlds the authors created were why I so wanted to become a writer. I have at least a thousand books sitting on my shelves that give me comfort and add warmth to my rooms or remind me of my childhood, but their words are now two small for me to read. Those books are forever destined to be decorations, or remembered journeys—no longer doorways to new worlds.
I can no longer watch foreign language films. I can’t read subtitles without hitting pause on every line and bringing the screen to within a foot of my face. I miss the exposure to other cultures and other languages, and another medium through which I can experience the lives of others. I miss exploring the reality of a world that stretches beyond my own limited horizon.
I can no longer see facial features. If you are standing more than a few feet away from me, I cannot see the emotions you share with me. I can sometimes guess when someone is smiling, because I see a flash of white teeth, but otherwise I have to rely on the timbre of your voice to tell me if there is warmth in your eyes, or look at your indistinct gestures and body positioning to guess if you are happy or stressed.
For each of those losses this past year, I have cried. For the many other losses I have not described, tears have fallen. And that is when the most bittersweet moment happens. For a few seconds, when my eyes brim with tears, the water forms another lens over my eyes, filling in the damage my Keratoconus has done to my corneas in a way no modern science can yet duplicate. It is through this beautiful veil of tears that I can see better than I ever have. That moment always moves me to the core, takes my breath away—even in the midst of experiencing great sadness. Then the tears fall from my eyes and that clarity and beauty washes away.
The pang of loss I then experience is always worth those small, miraculous glimpses of the world everyone else lives in, for I am reminded I am still able to appreciate the beauty around me, albeit in a different way to others. In a year where I have nearly died twice and been given medical news no one would ever want to hear, I have also discovered how brave I really am. I’ve survived multiple thyroid storms, Covid-19, a severe reaction to my radiation treatment, and then a thyroid stupor. My ophthalmologist, Dr. Thomas, even told me that I was remarkable in the very moment after describing just how flawed my eyes were. He said to look at me no one would know I was profoundly blind and he is impressed—shocked even—by how well I get around without aid. His words gave me the ability to recognize my own strength.
As I heal, I am developing confidence in this newer, flawed version of me. For so long I had thought I was failing at everything, never quite keeping up with life, when in reality I was doing bloody amazing considering all I had to overcome. Even when 2020 had given me some insurmountable hurdles in life, I simply tunneled through those mountains instead, forging a much stronger version of myself in the process.
No one is perfect—I am much more flawed than the average person—but I have discovered that it is often in facing our imperfections that our character will shine the brightest. I just had to realize that it’s not the hurdles thrown at me that define me, but how I overcome them. Now that my loved ones have seen the simulations of what I see, and the ophthalmologists have validated what I am going through, I do feel like I have a surer footing in the world and a better path forward, even if I will never be able to see that path clearly with my own eyes. For people to now know the truth of how I see and finally, truly get it, means I do not feel so alone, so in the dark. For in the end, that is what we all want and need: to just be valued, understood—to be seen.