Like most people living with retinitis pigmentosa, my first symptom was nyctalopia.

I first noticed my relatively poor night vision when I was nineteen. There was a girl I brought home one night. She waved her hand in front of my face, expecting me to laugh. “Can you not see me waving my hand in front of you”, she asked. “No”, I said, “can you see well in here?” She fell quiet before saying she could.

I relocated to NYC from Virginia in 2018. I quickly realized I couldn’t navigate nightclubs or bars with my friends like I once did. I tried going out and living my life anyway. I love dancing, electronic music, meeting new people, supporting a couple of my friends who DJ, and so on. Eventually, however, dimly lit environments became too stressful for me to hold normal conversations, find the bathroom, etc. Initially, I thought that I was just becoming socially awkward. I am apt to blame myself for everything or take responsibility for things which aren’t my fault. Except for sparsely populated bars, I basically stopped going out. Friends began making it a point to find well-lit venues, bars, and restaurants to attend when we went out together. It’s been like this for a long time.

It wasn’t until June of 2025 my vision began “tunneling” – losing peripheral vision, that is. What was relegated to nighttime all of a sudden became a daytime problem. I was walking through Union Square one morning when I observed my peripheral vision seemed to have vanished abruptly. I experienced a panic attack so severe, I felt like I had to sit down. And I almost never experience anything like anxiety or panic attacks.

I visited an ophthalmologist maybe a week later. He checked my retinas, sat in front of me, placed his hands on my knees and said “I’m so sorry”. He urged me to schedule an appointment with a retinal specialist in Manhattan immediately. “I don’t normally see this condition”, he said, “so I don’t feel comfortable diagnosing it”. So I called and scheduled an appointment for August.

August rolled around and I was officially diagnosed with retinitis pigmentosa in what seemed like remarkably little time. “You have retinitis pigmentosa with concomitant macular edema”, the specialist said, “so I want you to be checked out by the specialists at Columbia University”. He was referring to the retinopathy center at Columbia, which is a serious research and treatment institute – which worried me. So I called and scheduled another appointment.

The office I visited at Columbia was strange. It doesn’t have private rooms. Just one large room with miscellaneous medical devices lining the peripheries and tables and chairs in the middle. The doctor dimmed the lights as we entered. I sat beside him at his computer in a rolly chair, and I tried not to crack a joke about how he still uses Stata instead of R in 2025.

I came back to Columbia again in December and was evaluated again. This time with what’s called a Goldmann Perimeter Machine. It’s like a video game. You focus your gaze at the center of the hemisphere before you and press a button each time a glowing dot enters your field of vision. It’s a mentally exhausting test, surprisingly. At least for somebody with bad eyes.

The doctor then administered what’s called an ERG test. It’s the definitive test for measuring retinal health.

Electrodes are placed on your temples. A thin wire is inserted beneath your lower eyelids. You’re sat down in a small dark room and instructed to watch a screen for about twenty minutes. The screen before you flashes brightly at random intervals as electrical pulses are sent through the electrodes. The test feels Clockwork Orange.

“There’s no response”, my doctor said. He visualized the time-series data from the ERG device on his desktop, overlaid with transparent rectangles representing the random bright lights I observed. Healthy retinas yield a spike in electrical activity when there’s stimuli. Mine produce no perceptible spike. Not by the naked eye. Not mathematically. The time-series was just one long, flat line. He didn’t offer or even pretend to measure the p-value. There was no point.

“It’s unsafe for you to operate motor vehicles”, the doctor said. “I know you have an off-roading vehicle. You should sell it. I won’t tell the DMV, but your insurance will know. If you get into an accident and I’m summoned to court, I won’t be able to defend you. I’m genuinely sorry.”

Retinitis pigmentosa is a strange disease. It’s strange because there’s no easy or simple way to describe it.

You don’t lose your peripheral vision such that there’s a neat little circle left in the middle, like the online simulators suggest. You lose your vision in patches. In my right eye, I still have peripheral vision on the right-hand side. But in the lower quadrant, nothing’s there.

You can technically be diagnosed with RP without genetic testing; however, the diagnosis is under-determined until genetic tests evince the specific pathology. Clinically, it’s less like “you have RP” and more like “gene X is pathogenic and known to correlate with RP”, if that makes sense.

I received the results of my genetic test in January. The pathogenic variant causing all of my trouble is called RHO (c.68C>A (p.Pro23His)). This variant is known to cause autosomal recessive sideroblastic anemia and, of course, retinitis pigmentosa (with erythrocytic microcytosis).

Having retinitis pigmentosa means I have a low-vision disability. Because the condition’s rare and incurable, I’m now part of a global community of researchers and patients. There’s an online platform I was asked to join so I could evaluate upcoming and ongoing clinical trials. It shows a dashboard of roughly everybody (in the United States) who is diagnosed with RP, which sounds sketchy until you think about it.

Incredibly, I’ve so far met two people who also have retinitis pigmentosa. I met one at my gym and another on LinkedIn. We instantly became friends. They’re worse off than I am. One has basically no field of vision remaining at all. The other has a little left, but he’s managed to have a great life anyway. I’ll be where they are in probably one to three years, but we can’t know for sure. People ask me that all of the time. I never know what to tell them.

I use a “stick” (cane) sometimes but generally don’t. I avoid it. Call it pride or obstinance but I don’t want people treating me differently. Specifically, I don’t want judging glares when I put the stick away since I only need it in certain situations. You know how people can be.

The percentage of blind people who can’t see anything at all is not as high as you may expect. It’s approximately 18% of the total visually disabled population. The point of wearing sunglasses everywhere is roughly two-fold: give the eyes a break (artificial lighting hurts) and implicitly signal that your eyes are cooked so there’s no guesswork. If you’ve ever awkwardly stared at somebody with a stick and sunglasses, they probably saw you staring. Just FYI.

My condition places me in the category of the “invisibly disabled”, which brings a unique class of uncomfortable experiences.

• I miss handshakes and fist bumps.
• I bump into dogs and children.
• My shins are covered in bruises.
• Commuting on the train and walking around Manhattan are stressful.

Daily life now has an undercurrent of low-grade stress, frustration, and, rarely but nevertheless, humiliation.

I can’t take little things for granted anymore. Diminutive things, like grabbing a straw from the bartray at the other side of a busy coffee shop without bumping into chairs or short people, have become accomplishments.

Then there’s the matter of my career.¹

Finding motivation to not only finish but crush my work was previously never a challenge for me, no matter what I was going through. Learning I am going blind and that there’s nothing I can do abruptly changed everything.

Being a spiritual-boomer, I previously never saw myself taking short-term disability leave. Then again, I reckon nobody foresees that. But between August and October, I took leave. Not because I wanted to do so but rather because my productivity plummetted in every domain. Multiple coworkers encouraged me to take leave. I ignored them at first and tried pushing through. But I kept hearing variations of, “it’s times like this which are what leave are designed for”, and I kept missing deadlines. They wore me down eventually. Or something like that.

I wanted to trust my employer would understand. But as I learned after returning from leave, it doesn’t.

If you want to wear my shoes for the next few minutes in order to understand what this journey has felt like – to experience a sample of what I’ve been going through, that is – then here’s an empathic portal you may walk through:

Imagine you dreamed from early childhood about some day owning a boxy Toyota with giant tires. You saw a Marlin Crawler advertisement in a magazine when you were eight and instantly fell in love. It’s cringe but the dream never died. You weren’t sure how but you knew some day you’d realize the dream. Suppose the dream was so meaningful and longstanding for you – you told nobody about it because you didn’t want anybody to ruin it, preferring instead to wait until the day when you can physically manifest it. Suppose you move to the West Coast for two years and bought an old, boxy Toyota that barely ran. Suppose your decision to move to the West Coast had, to a small degree, something to do with buying a truck like that. Suppose you dumped tens of thousands of dollars into building a highly capable machine which won car shows and crawls over massive rocks with ease. People on the highway hang out the window and exclaim, “tell me that’s got the five speed in it”. And you tell them it does indeed have the five-speed in it. And they offer twenty-grand on the spot. Now imagine your doctor tells you about two years later you can’t drive again. Oh, and, by the way, there’s no cure. And it’ll get worse. Much worse. And you’ll consciously observe that and there’s nothing you can do about it. Learn to use a cane. See you in two months. That’ll be two billion dollars. Plus tax.

I cried every single day for four months, August through November.

The reality is I’m going blind. Gradually.

I’m at the proverbial edge of being designated “legally blind”. All I can do is try not to break when I fall.

Regenerative treatment is a pipe dream. There will probably never be a cure, advancements in artificial intelligence notwithstanding.

And even if a cure appears, it will arrive too late. It’s already too late.

I understand this. I understand that.

Silver’s too expensive to line this story.

So please, for fuck’s sake, don’t tell me what’s happening is really something else.

I kept walking. Not because I am brave or strong or resilient but rather because I didn’t know what the fuck else to do. And neither do you.

I formed an open-source collective. I continued maintaining my open-source projects. In fact, I created a new one. I’m even working on another in my free time. I was accepted into the AWS Community Builders program. My work was featured in important newsletters and conferences. I showed love to the people I care about. I let my friends know what was going on with me, but honored my suffering in silence and dignity (until now). It is a miracle I haven’t fallen apart.

What made this journey exceptionally difficult, however, actually had nothing to do with my condition at all.

There was an unexpected, abrupt, and extreme relational rupture which occurred during this period. There was no clear cause or reason and I had no way of seeing it coming. I asked what was wrong, but all anybody could offer me was speculation. They never explained themself directly, asked any questions, nothing. All I know is they seem to believe something terrible happened, and it sounds like nobody sat them down to explain everything was fine. More, my efforts to repair and heal the situation inexplicably made matters worse. Every kind, patient, and empathetic impulse I had cultivated over the course of my life, which had previously served me well, suddenly was a problem for somebody who couldn’t seem to bear it. I had never experienced anything like this before in my entire life.

This was a strange and confusing situation in the sense there’s little if anything which anybody involved actually knows or understands. What little we “know”, doesn’t make sense. However, I was later told by somebody who knows this old friend a little better that (to paraphrase) they’re known to be “strange and off” – something I had no idea about when we met. Whatever the case, this experience added something like moral injury on top of everything else I was going through.

To have something so bewildering happen as I learned my field of view is physically narrowing, and that there’s nothing I can do about either thing, thrust a quasi-mythical quality to this period of my life. I don’t know how else to describe it, and I don’t believe that description can be characterized as dramatic by anybody who’s close to the details. I reached out to this old friend as a well-meaning reaction to my condition. Reaching out to old friends (they weren’t the only person I contacted), instead of withdrawing from the world, seemed like a great idea. In all cases, except for this one, it was a great idea. Everybody but them was happy to hear from me, inviting me to see them as far away as Argentina in one case. Reconnecting with somebody I held in high esteem was supposed to raise my spirit, not crush it.

I don’t know if they’re aware of my condition or how it’s impacted me. I’m not sure it would’ve changed anything or if they’d care. Frankly speaking, I doubt it on both accounts. All I know is I don’t know what happened or why. I did not deserve to be treated like this. Nobody understands. I don’t believe even they could explain themself if asked.

I’m not religious or into woo-woo-ology, but it was (and still is) genuinely difficult not to think or feel at times like I was being tested by . . . something. Like I was dragged into some twisted initiation I never consented to or been informed about and which our culture will, on the other side, no doubt demand I collapse into the cringe-inducing form of Ten Things I Learned.

Well, I didn’t break. Not completely. I refuse to sanitize my story into pithy, feel-good bulletpoints, however, so demerits for uncooperativeness, says the preceptor in my head.

Being diagnosed with a permanently life-altering and incurable condition -> betrayal by an employer -> inexplicable, once-in-a-lifetime relational rupture – that’s a lot. Frankly, that’s rare. And not in the special, narcissistic sense of the word “rare”.

There’s more to life than work. I am just as woke and jaded by hustle culture as anybody else, but, in the end, I’m an all American boy. I work. A lot.

The public artifacts of my open-source work are strong, but I don’t think it’s grandiose to say the enormously stressful context in which those artifacts were imagined, published, and maintained makes them something else.

We can talk about contributions at my job all day. Those accomplishments are certainly relevant and valuable, but they’re remote. Open-source projects – public objects which various companies apparently use, enjoy, and depend upon – offer unique insights that are normally difficult or impossible to come by.

I am writing directly to any prospective employers who might be reading this: would you rather hear about a system I implemented – something I could embellish or make up completely – or see one for yourself? Would you rather hear about a project or evaluate a whole ecosystem I’m gradually building in my free time?

What my CV doesn’t say (because it can’t): the greatest achievements of my career occurred during the most difficult period of my life.

What does that say? Something peculiar about life – metaphysical, phenomenological? Both? Neither? Something else? Nothing?

Until now, besides family and close friends, nobody knew what I had to overcome – what I am still overcoming. So far I’ve kept all of this to myself. But I think people should know. I sometimes trust such thoughts blindly and figure things out later. We call that “emergent design” in my field.