Written by J. D. Rider

It was November 21st, 2024. The sunrays shot their golden warmth on Flagstaff, Arizona. Life was glowing, shimmering, and people were enjoying it (well most of them, undoubtedly) except a sad, disabled man who left his dark apartment.

“Taking out the trash might’ve cost me my d-mn life! The sun messed up my stupid eyes!”

That was Wilson Bishop, 34 but “95” in how he felt from sicknesses. Despite his youth and intellect his health had brought oblivion, the sacred plane of precious life retreating to a black hole, a trap of light intolerance, seclusion now reality, with beauty dead or vaporized, superseded by a bane, a dismal, rare phenomenon which goes by photophobia. Though don’t be fooled by such a name—it’s not a fear or phobia; it’s real, wholly physical, causing pain to normal light and making it unbearable, like photons waging visual wars, unseating someone’s harmony.

This odd condition can disable a person to the point of feeling pain to every single light source, a problem paradoxical since light is everywhere. It’s hyperacusis for the eyes, and light itself a laser beam, its blinding, piercing, burning shine directed toward the eyeballs. It’s somewhat like the stinging pain when stepping out into the sun in beaming June’s intensity. Your vision meets a bright attack until adjustments normalize, which healthy people’s always do, but not with photophobia. The brightness never goes away, as if a filter disappeared, and thus the constant agony.

For Wilson this oppressive fight was absolutely baleful, (as it’d be for anyone) commanding him to prison life through light-restricted loneliness inside his tiny bedroom, two windows double covered up with thermal, midnight-colored drapes to shoo away reflective light and brightness coming from a ball that burns like Satan in the sky. Attacks on his humanity. Total black. (the safest choice) Darkness. Feral darkness.

And that was just a puzzle piece amid a trap unsolvable. First he’d dealt with noises (and still he battles noises) because of noxacusis, causing pain to normal sounds. And now the photophobia.

“There’s a strange connection between nox and this light sh-t,” Wilson testified. “So many people have both. I think the ear sh-t always precedes the eyes. I’m not sure why. I feel pain to almost every sound. Knives and burning bullsh-t. Then I got the light stuff, the photo-whatever-the-doctors-call-it after just a few months. It was mild at first and quickly escalated. Well November 21 was my latest mistake. You won’t believe it probably. It’s just too d-mn ridiculous: stepping into daylight. That’s all I f—in’ did! And now I’m kicking myself because before this had happened I figured it would probably be a costly mistake to try to take the sun on. My sunglasses failed me, but I was sick of being trapped. You see, my dad was out of town and usually takes the trash out. I told myself, Wilson, be brave. Wilson, be a soldier! Big mistake, idiot, ‘cause this sh-t doesn’t care. It doesn’t permit bravery. Doesn’t let you live a life or handle basic f—in’ tasks. Not without a consequence.

“Ever since I went out my eyes have dropped in tolerance. So now I can’t even tolerate my d-mn phone! Its screen is killing me! Not even five minutes pass and I’m in major pain! This is absolutely nuts! It’s hard enough to be allergic to sound, you know? But light too? Hell no!”

Wilson went on to re-explain and emphasize imperilment, rating his predicament with solemn tones of clarity, how a simple misadventure to the eye-attacking outdoors–bringing pain and tragedy and oh, the nights of restlessness–might have been the final straw which harshly broke the camel’s back, (in this case Wilson’s fragile eyes and tug-of-war relationship with living and expiring when walking their unstable line) as his ailing soul had already suffered incapacitation that transcended comprehension. He’d cruelly observed how the hallowed land had shifted to defiance; had sunk to inhospitable. He wasn’t able to enjoy the tranquil air of birdsong. The grass, freshly manicured, its earthy scent enveloping; its autumn sights forbidden now, yellowish and green. The blue, artistic firmament, cloudless in its vastness. Life’s kisses all impossible. There were no kisses happening, no hints of pleasure’s sovereignty, because the light was bearing down as if there were a thousand suns!—with sounds that bridged on nuclear!

A lonely hermit giving up, he was living in his house and never going out, avoiding light and noises. But is that even possible? Well no, not entirely. Even while hiding. Wilson was taking the daily, redundant beatings of a soundscape fully bastardized, its omnipresent sovereignty a thing he couldn’t battle. Hiding helped a little bit, but it was futile diligence when neighbors cut their growing grass or planes flew over, raining sound. Even with protection on his noxacusis strangled life, squeezing tight and choking it, never stopping for relief, that fly-by-night destructive thief consuming almost everything (Three-fourths? Four-fifths? You lose your count when suffering. . .) long before the bright attacks would strike to claim the rest of it: that evil photophobia. In fighting the unending grip of that barbaric strangler which came as sound intolerance, he thought that he had seen it all; thought that it was over with; thought that all his misery had reached the point of maxing out. But oh how wrong he reckoned that, judging it auspiciously and thinking like an optimist where pessimism reigned. What would be his future now? And was his life redeemable? Well, he thought, it’s probably not. And Probably I’m a dead man.

Losing his ears along with his sight in seeing the setback the sun had aroused was pushing Mr. Bishop’s mind to fancy the unthinkable: that this might craft a morbid death. Sayonara, suicide, an end he would have never guessed considering his former life: his cash/success from working hard; (carpentry his short career) dating, friends, and family time, erased as if their bubbles popped. This hell was inconceivable. If he would have to hunker down inside his dark, oppressive room and never get a second chance he wouldn’t want to carry on. (And who would, honestly?)

“I just don’t understand this: how it’s even possible. It’s like I’m damned! F—-in’ cursed! Somehow stripped or targeted!”

Yes. Damned. Targeted. Cursed into oblivion, as if the evil universe were orchestrating suffering with pitiless calamities! Traps and evil smiling, the crazy Jigsaw murderer from Saw’s demented universe the one who called the heinous shots! (At least it felt comparable. Ha! Let’s turn up the light and every sound and see if Mr. Bishop here can tolerate the torture! I want to play a game.)

To the empathetic reader, it shouldn’t bring surprise at all that Mr. Bishop’s tortured eyes and ears that scream in agony would whisper to the thinking mind to seize a lethal dirt nap, an F-you-life-I’ll-suicide, because his unforgiving hell is just like Pattie Bylsma’s, who did die by suicide. In California she had passed at just the age of 33. She’d suffered photophobia to every single little light.

It had started shortly after she’d suffered a jerk and concussion from a rollercoaster, upending her life with noxacusis also, denying Pattie a humane existence. She’d gotten so severe she had to wear an eye mask, so much so it was rare to find her not wearing it. If she wasn’t she was in a somber, dark area, usually her bedroom.

Pattie’s eye condition could easily be worsened. For instance, something as simple as using her peripheral vision by moving her eyes to the side to look at certain things. Or if she stared too long at screens of any kind. Even an e-ink. Setbacks could take months to improve, if ever. And many times she was forced to forgo the use of screens for long and lonely periods, turning to braille for reading books.

It was tragic because her severe limitations with sound had already forbade her from so much, and having the eyes added in basically meant she didn’t stand a chance. Poor Pattie basically contracted dual annihilators, allotting every sound and non-compliant light an entrance to her universe as iron-fisted torturers! What a sick reality, exiled to a brutal hell inside a dreary burial, its grays and blacks and gloomy tones because of evil blazing lights, its sounds like speakers fully cranked and cruelly inescapable because their waves were everywhere! The universe had stifled her; left her in a paradox; made her life a prison cell which had no key to open it. Tears within a solitude. A fire’s passion burning out, fading to an ember. And undoubtedly Pattie must have felt its heinous, trap-like structuring was just a platform engineered by sadist-loving Jigsaw. Sadly his malicious game is common grounds for sufferers who cross to places destitute when noxacusis overtakes, as those within this article will tell you with their tragic words.

Somehow, some way, there is a correlation, (or seems to be, apparently) noxacusis and photophobia shamelessly joined together by a marriage officiant, a ruler decreeing an unholy matrimony. But why so? What gives? How are they related? Why do they go together like a batch of nasty peas and rotten baby carrots? Well these are questions unresolved, and research by professionals in medical establishments is needed for epiphanies.

Another perplexing element to the mystery involves the fact that exposures to normal, everyday lights can worsen the condition permanently. Therefore light avoidance is not a choice but rather a necessity. A twisted GAME, unspeakable, its players bound by slavery, their masters Mr. Wretched Sound and Mrs. Dominating Light, and Jigsaw as their puppeteer. (I want to play a game. Game! Game! GAME!)

And one such player, Josie Wells, described what this is really like, its shock and effects a wounding evolution which unbearably subdued this 32-year-old in Franklin, Tennessee. She’d also met its ruthlessness when she had gained the confidence to issue a dispute!

“One day I woke with everything looking way too bright. I have noxacusis, tinnitus, and patulous Eustachian tube. I had had them for a year before my eyes became bad. I think it was all the time staring at my phone. The blue light maybe. Ever since I’ve been homebound with these ear problems all I do is use my phone all day. Well now I can’t. And actually my friend is typing this up for me, and I’m crying because it’s so hard to think about: how most of my life is now this dark, claustrophobic room.

“If I leave I suffer consequences. I get severe burning and aching in my eyes. Mechanically-speaking I often wonder what it is that’s causing all of this. Maybe the trigeminal nerves or something else. I don’t know, but it’s hell—that I do know. I think it’s true that this is probably the loneliest, cruelest hell a person could endure. It robs your life of everything, and I mean EVERYTHING! Sound and light are everywhere, everything we ever do, and both are dangerous for me.

“The tipping point for me was when I said enough was enough and went outside. The light roasted me, (She’s like the aforementioned Wilson.) and ever since I haven’t been the same. I regret that decision so much. What the heck kind of life is that? Where you can’t even step out the door? You’re not human.”

J. D. Rider, living in the art-rich city of Columbus, Ohio, authored this piece you’re reading and also was the aforementioned Pattie’s boyfriend, but sadly he’s another tortured puppet of the bane photophobia. He’s only 39. (Notice the trend, everyone? Everybody’s young.)

“I haven’t been out in the sun for two years and counting. I get instant pain to light, not just the sun but normal, everyday lights. It started without warning after having noxacusis and tinnitus for almost 20 years.

“When I venture from a dark room to a lighter one my eyes take long to readjust. I slowly ease into its light, giving my sight a few minutes to recalibrate. If I don’t I’ll feel pain–stabbing, burning, blistering. And it never reaches a level of tolerance that’s comparable to a healthy person’s eyes. It’s always much worse. And if I go in the dark for two simple minutes, I once again have to cautiously ease into the light, first because I have much lower tolerance, but second because the way in which it filters the dynamic differences of light from room to room is lagging like a turtle. In other words, it readjusts much slower than it used to.

“Reflections are really painful. For instance, if I look at a cellphone’s face and turn it, the light from the room will reflect and move across its surface, causing instant stabbing pain. The same with plates and silverware. The same with even books! Anything reflecting light.

“I have to keep the television on its lowest brightness setting; also on my cellphone. Sometimes I can’t even watch stuff, because in the show itself it’s too dark to see what’s going on. On phone or TV screens, sometimes moving images will trigger nausea. In those cases there’s certain programs I can’t watch. For some things I try to use an e-ink and that helps a little bit. Also blue light glasses to block the glare.

“When I overexpose, I get prolonged burning/aching pain and lower tolerance. Like headaches in the eyeballs. The same occurs with dry eyes. I try to keep them moisturized.

“I recently had a setback. All I did was spend too much time in a bathroom with a light on. It’s madness! At 39 these are really scary conditions to have. Can’t tolerate sound at all, and light is encroaching on life’s habitats. It’s been weeks and my setback hasn’t let up. I’m actually worsening, as light is something you can’t avoid; it’s everywhere, you know? Like sound, the other punisher. With this you use your eyes you lose them–that’s the gist of it. Eventually you worsen. But I refuse to be confined to unforgiving darkness, awaiting an eternal rest which savagely had carried on until this life’s concluding bow, 40 years in-the-making. Where do they put the worst prisoners? Solitary, right? We’ve seen it in the movies: the dark box of a damned room. For days, not years, though, they have to tough it out. Well what my ex Pattie dealt with was really solitary, decreed as everlasting. The worst parts of prison’s hell with no release contingency. Who could really do that? Well she did for 11 years. I don’t know how she managed that. She was a real warrior.

“So what the heck is causing this? It’s all just speculation. But if you think about it, photophobia is quite similar to hyperacusis. It starts as brightness–everything looking too bright. That’s like loudness H, where everything is too loud. Then, as it progresses to its more severe stages, it becomes pain to light, both instant and delayed. Burning/stabbing irritants. Aches and acid bleeding through. That’s like noxacusis. Having only one of these would be enough to ruin you, but having both conditions is . . . well, in a tragic way, almost indescribable. Good luck on getting another person to understand it. Been there, tried that. Sometimes they do, usually they don’t. But that’s because this suffering is something most can’t comprehend. It’s just too monumental. But if they can, God help them. They need some prayers and miracles.

“With sound and light in daily life, every single little thing is married to their essences. So these conditions stifle that. It’s not a catastrophic thing–it’s more an end to precious life. A f-ck you ultimatum. It’s not like being deaf and blind–as some might try to label it–because you feel horrid pain when sound and light envelop you, which spells a ruthless paradox since both are always everywhere. You see, with the deaf and the blind sufferers, these two pillars of life had cruelly delivered truces. A robbed stalemate. Yet despite these losses they maintain their coexistence. For nox and photophobia the opposite is playing out–people face embattlement, fighting the pillars nonstop. The death of coexistence. It’s as if the angry pillars were restlessly firing missiles. Habitually firing bullets. Maybe using swords. There’s absolutely no peace. Think The Twilight Zone. Or Hell on Planet Earth, where its searing fire has viciously come to torture them. It’s like Hell but sound and light replace fire. For ears, in particular, even the best protection only offers partial coverage. And light is the only pillar here that you can block entirely. If you’re willing to hide in the lonely dark.”

Many are, such as Sarah Arezki, another warrior of these harsh conditions who miserably hides in Algeria at just the age of 27. She outlined her symptoms at great length.

“I have noxacusis, tinnitus, and tensor tympani syndrome. I got the light intolerance after an untreated nose/throat infection. I took prednisolone to reduce the inflammation, but didn’t take the antibiotic until a week after that. I think both the infection and the steroids worsened my eyes, because before this I had only suffered mild light intolerance, but it didn’t keep me from living a normal life. I think having dry eyes and being on a screen all the time has also contributed to its worsening.

“As for my symptoms themselves, whenever I look at my screen or look at light itself my retinas will heat up. I literally feel burning in them. Lights look much brighter than they actually are for healthy people, so I can’t be in a fully lit room. And I have to use sunglasses to use my phone or leave my room when heading to the bathroom. I have to stay in the dark all the time.

“The pain sensations from sunlight and LEDs are the worst of all. I can’t even go into sunlight, nor can I be in a sunlit room. Sunglasses aren’t enough. To my eyes the sun is pure poison.”

Many have described the dangers of our parent star. So with such a condition its embattled holders are like the fallen shells of damned vampiric creatures. The usual gentle touch of warming, golden rays is like the hot ferocity which Dracula would deal with when stepping in the sunlight!—it burns horribly! It maims, scars, deconstructs!

The list of helpless victims continues in Jacksonville, Florida with Destinee Moore, a 39-year-old bearer of noxacusis who also happens to have photophobia.

“I personally think my patulous Eustachian tube disorder caused it. But also my noxacusis might have. I don’t know how to explain it other than to say that bright lights really hurt my eyes. Sunlight hurts my eyes. I have to keep my house dim with the blinds closed. Everything is bright to me, like the filter broke in my eyes. The TV brightness is something I have to turn down, and when flashes happen on the screen I feel stabbing pains. Only with sunglasses can I go outside, but not for long at all. This all started last year. I have had patulous Eustachian tube since 2018, noxacusis and tinnitus since 2019, and this light sensitivity since 2023.”

Next, we head to the UK, where a 31-year-old remained anonymous, but offered his story of photophobia.

“Since getting nox two years ago I slowly noticed an increase in light sensitivity. About one year ago I had an awful period where I had to sit in a dark room for nearly a week. I had so much eye pain to light. It did thankfully get better and it seems stable now. I do think earmuff overuse might have contributed to it, maybe pushing on the trigeminal nerves or causing some muscle imbalances, as switching to lighter weight muffs seemed to help the matter. I also suspect lots of screen time and bad posture were involved.”

Our final participant is Truli in Ireland, now in her mid-50s.

“I have noxacusis, tinnitus, and light sensitivity. The light issues are bad enough that florescent lights and LEDs are quite bothersome, and the sun is often bothersome. I’ve always preferred dimly lit rooms. In fact I had lived by using one candle per night in the past 20+ years, reading to my kids as well as cooking and washing and doing other tasks in my caravan or house. And now, instead of the candle, I only use a soft glow lamp on the floor for the whole house, while having the thick curtains drawn to keep the light away. In my history of light intolerance I’ve had to give up jobs due to bright lights and unremitting noises, such as hairdressing and bar management.”

Until research is done and treatments are awarded, these hells will go unrecognized, except in the small circle of the noxacusis world. Right now we have people whose sole purpose in life is hiding from aggressors; they’re essentially hiding from existence itself, because existence is seeing, hearing, doing, and all are beyond baleful. Playing dead for noises and unrelenting blinding lights, that’s all they ever do—hide, weep, remember; study times of former bliss, their beauties now impossible, when life was whole and resolute and Earth a sanctuary. But now, just a vile storm, raging at its center. Now, hell, desolate. The dead among the living. They’re the toughest, nonetheless. Fighters in a bullpen, one that’s blinding, deafening. Let’s hope their hells are lifted soon.

*Some names and locations were changed for privacy purposes.