Looking Down – The Mental Health Impact of Vision Loss
Listen to Editor in Chief Gabriel Nathan read this post aloud:
My poor eyesight is a constant, discouraging disadvantage.
It is also my most prominent anxiety and depression trigger.
“That’s… let’s see… twenty over a hundred,” said the optical assistant.
“That’s… let’s see… really bad news,” I replied dryly.
Twenty over a hundred. That’s halfway to legally blind, which is 20/200. It means I must be five times closer than a normally-sighted person to see clearly. And that’s 20/100 corrected—eyeglasses on. Let’s just say I hear the phrase “as a bat” a lot.
That exam, in June 2021, was my worst to date. I’d been in the 20/60-70 range for nearly two decades.
“Here we go again,” I thought, give or take a few expletives.
Given a do-over, my eyesight is the one thing I would change about myself—and that’s coming from a clinically depressed, anxiety-ridden recovering cocaine addict. It started in 2003 with two terrifying words.
The phrase was scrawled atop a printout of a visual field test, which reveals scotomas (blind spots) in a patient’s eyesight. The readout showed worrisome black spaces covering nearly a full quadrant of each eye.
Frequently, the culprit in these cases is a tumor pressing against the optic chiasma, where the optic nerves cross. A growth wedged there would explain the yawning, nearly symmetrical bilateral vision loss. The doctor was ordering an MRI to scan for such a malignant interloper.
A few nerve-wracking days later, the doctor called with the MRI results. Not a tumor. But not in the clear, either. In a follow-up exam, my vision had diminished to 20/30—about 50% less sharp as a normally-sighted person.
Thus began a mortifying eighteen-month-long medical misadventure to determine why a twenty four-year-old was seemingly going blind. Whatever the cause, it concerned my optic nerve. Comparing the eye to a video camera, my issue is the cable, not the lens.
Optometrists. Neurologists. Ophthalmologists. Neuro-ophthalmologists. When your condition is stumping doctors with seven syllables in their titles, there’s a problem.
Chart tests. Field tests. Colorblindness tests. Failed, failed, and failed with extreme prejudice. Electrophysiology exams, head and back MRIS, even a spinal tap when one doctor surmised I had multiple sclerosis. He was wrong—another bullet dodged.
All the while, my eyesight slipped from 20/30 to 20/40. To 20/50. To 20/60.
Then… it just stopped.
Right around 20/60-70(ish) with large blind spots, my vision suddenly stabilized. Despite the lack of a satisfying explanation, the remainder of my eyesight was spared, at least for the time being.
What hadn’t been spared was my psyche.
I don’t know whether I’d have developed chronic depression and, from there, alcoholism and drug addiction without so severe a blow to my mental well-being in my early twenties. What I do know is that the connection between my physical and mental maladies is strikingly linear.
With my vision loss mercifully curtailed, I tried to reengage with life. I recommitted to my career, moved out of my childhood home, married my longtime girlfriend. I tried to fast-track an adulthood delayed by a protracted medical scare and the obsessive worry foisted upon me.
It didn’t work. Perhaps someone less inclined to anxiety and depression would have righted the ship. I sunk. Crippling anxiety, insufferable insomnia, deep-fog depression. Finally, a suicidal gesture that found me peering over the edge of a five-story building on a freezing winter night.
To varying degrees, all of it has a genesis in the inescapable detriment I wake up with each and every morning.
Partial sensory disabilities are, generally, invisible to others. While I’m nowhere near needing a white cane or guide dog to get around, each day I face the world with an incomplete picture of my surroundings. I am removed from full perception and functionality without most people having any idea about my detriment. Alienated and anonymous, I get by with 8-bit vision in an HD world.
Despite my most eloquent efforts, my visual disability remains elusively indescribable. Obtaining a comprehensive picture of what I’m missing is impossible because, of course, I can’t see what I can’t see. And showcasing what I am seeing is impossible because, of course, we can only see the world through our own pair of eyes, damaged or otherwise.
The result is a medically unique condition that yields an equally unique sense of loneliness. Unlike addiction and depression, full empathy with another human is essentially impossible. And also unlike my arrested addiction and medicated, psychiatrist-treated depression, my visual disability never gets better. My eyesight is stuck on the “shitty” setting.
It is unalterably perpetual. So is the mental toll it takes.
For starters, the prolonged period of unexplained vision loss birthed an understandable amount of anger and post-traumatic stress. These might seem like two distinct issues, but they are welded together.
Let’s start with the anger, the resentment, the cynicism. I’ll admit it: the fact that this fate befell me, and at such a young age, pisses me off something fierce. No one should have to go through something that scary for that long. It isn’t fair and, as much as my years of depression treatment and addiction recovery help push against this ultimately useless narrative, part of me still hasn’t forgiven the universe. I want my eyesight back, goddammit.
I wouldn’t be so angry if it hadn’t been so traumatic. And it wouldn’t have been so traumatic had the doctors just listened to me more. Over and over, the same smart people with the same smart people pedigrees took the easy way out upon failing to find a fitting diagnosis.
It was, many would tell me, mostly in my head. I had a visual deficit, yes, but what was registering as diminishing eyesight was panic-based. Your eyes, they tried to convince me, were better than the tests suggested.
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For months and months, the not-so-implied message was this: You aren’t going blind, you’re going crazy. Only until I noticed it had stopped getting worse did these same folks come to realize that, indeed, 20/60 was as good as my eyesight could perform.
And in reality, my eyesight hadn’t really stopped getting worse. It just stopped getting worse quickly. It went from taking months to lose a line to years to lose a fraction of one. For proof, I need look no further than a book I used to rapidly read but now struggle to peruse; this is a symptom of minuscule blind spots accumulating in my central vision. Again, only I can see what I see… and what I see isn’t what I used to see.
And that brings me to the worst of it. To the fear.
Every day, I battle some amount of dread, ranging from wrinkles of worry to waves of panic. This isn’t fear of living with my current detriment but rather the specter of further deterioration. Regardless of how “clinically stable” my eyesight might seem even to experienced doctors, I’ve certainly lost more vision over the years.
This “examination elusiveness” is frightening in and of itself. Eyesight disabilities can be so customized that even the most modern detection methods and equipment struggle to pinpoint mild acuity deterioration. In some ways I am beyond the reach and even the analysis of medical expertise; there’s a lot of fear, and a lot of loneliness, in that.
Worst of all, though, is the likelihood of continued vision loss that dangles like a Sword of Damocles over my already-frayed optic nerve. Simply put, I don’t have much more to lose without forfeiting any semblance of normalcy. My roughest days—when my vision is experiencing an even-worse-than-usual stretch due to eyestrain, too much sun or the myriad factors that adversely affect it—evoke a pit-in-the-stomach panic. Is this difficult day an even-less-acceptable preview of the near future?
And really, even “good vision” days are… well, not particularly good. I’ve flagged down a bus from afar, only to realize it was, in fact, a truck. I’ve walked up to a friend and made a crude inside joke, only to realize that, on closer inspection, the person in front of me was a complete stranger. I’ve violated the small-font instructions of countless documents and street signs.
It’s just… relentless. And immovable. And irreversible. It requires navigating countless impossible scenarios, from reading a PowerPoint presentation in a meeting to following a baseball game from the stands. My blown-up computer screen text, my too-close-to-the-TV living room chair. My feigned happiness when someone gifts me a paperback I can only truly enjoy on an e-reader. My eyesight is an inescapable indignity bombarding me with simple tasks I simply cannot perform.
Even now, after twenty years of coping with this, I still go through stretches when I obsess about my vision. I’ll catch an even-blurrier-than-usual glimpse, test my eyesight against a set of baselines I’ve established, and off to the cycle-repeating races I go. Eyestrain and headaches. Anxiety and anger. Dejection and depression.
In such cases, my eyesight reverts to what it’s been for two decades running: a key catalyst of anxiety or depression. Here, my mental maladies are both rooted in and exacerbated by my physical disability. They also bring out the character defects I’ve fought hard to diminish in recovery from addiction.
For example, anguish over my eyesight has a way of “pre-filling” the amount of frustration, annoyance or pain I can handle. Some days, my disability is about all I can deal with and, when additional stressors inevitably arrive, I overreact. I wake up fed up, an ill omen for accomplishing my generally busy schedule without giving up or lashing out.
Hurt people hurt people, and sometimes I’m hurting pretty bad. “You can’t see,” something (my depression? My anxiety? Just myself?) tells me. “This is useless, and unfair. So fuck all of this and, while you’re at it, fuck all of them too.”
Because as much as anything, my eyesight caters to depression’s primary emotional ingredient: hopelessness. My vision feeds feelings of futility that play right into my depression’s hands, an inextricable intertwining of physical and emotional health.
There’s a fine line between “it is not good” and “I am not good.” And if my eyes will never get better, this diseased mindset says, I will never get better.
Suffice to say I don’t have a lot of wiggle room here—physically or mentally. And that brings us back to last June. To 20 over 100. To a 42-year-old with a decade of sobriety and a promising career. To a husband and father with a hell of a lot to lose.
The next day, I found myself in an optometrist’s office. That might seem commonplace, but it’s decidedly abnormal for someone whose eyecare requires a neurologist specializing in the optic nerve. To me, optometrists are amateur hour.
But not this time. Because this time that optometrist played around with my lenses, spent a solid half-hour on the “1 or 2?”, “2 or 3?” progression tests…
… and got my eyesight basically back to where it was. 20/70-ish.
It was my first real scare in a while. It will not be my last.
My eyesight will continue to cause me fear, stress, frustration, isolation. It will continue to smack me with daily examples of my “less than” existence. It will drive me toward depression and, sometimes, I will go along for the ride.
This is about mitigating the mental anguish, not eliminating it. My eyesight and psyche are too compatible, and too compromised, for a knockout win. My victories are more narrow, and come via majority decision. Or rather, my own decision to move forward for lack of an acceptable alternative.
There are several tricks I employ, from eye-relaxing thousand-yard-stare breaks to “looking over” something to see it clearer, a nod to the pinpoint blind spots in my central vision. Those, of course, are particular to my plight.
However, what I hope is more universal is how disability drives me to focus on what’s truly important to me. It might sound corny, but the best way to take my mind off my eyesight is through estimable acts like playing wiffleball with my six-year-old (which I can still ably do), cuddling with my rescue dog, or simply reaching out to someone and asking how they’re doing. Concentrating on life passions—writing first and foremost—also have proven reliable salves.
There are no long-term answers, only short-term solutions. I will live as normal a life as I can, as well as I can, for as long as I can. With an issue so complex, so entangled with my very being, I must keep it that simple.