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. “Yeah”, she said, “I . . . can see you clearly”.

I relocated to NYC from Virginia in 2018. I soon realized I couldn’t navigate nightclubs or bars with my friends like I used to. 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, recognize facial expressions and cues, find the bathroom, find my way back to my friends from the bathroom, and so on. Except for thinly patroned bars, I basically stopped going out. Friends began making it a point to find well-lit venues, bars, and restaurants whenever 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 had 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 solemnly 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. I called and scheduled another appointment.

The specific office I visited at Columbia University was strange. There aren’t private rooms. Just one large room with miscellaneous medical devices lining the peripheries and tables and chairs in the middle. My doctor dimmed the lights, which was considerate. “He really understands my condition”, I thought to myself. I sat next to my doctor’s computer in a rolly chair, and I tried not to crack a joke about how he still uses Stata instead of R.

I came back to Columbia again in December and got evaluated again. This time with what’s called a Goldmann Perimeter Machine. It’s like a video game. You 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.

My doctor also administered what’s called an ERG test. It’s the definitive test for healthy retinal function.

Electrodes are placed on your temples. A thin wire is inserted beneath your lower eyelids. You’re sat down in a dark room and instructed to watch a screen for about twenty minutes. The screen before you flashes brightly at random intervals. 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 with Stata, overlaid with transparent rectangles representing the random bright lights I observed. Normally functioning retinas yield a spike in electrical activity when there’s a stimulus. Mine produced no perceptible spike. The time-series was a long, flat line. He didn’t offer or even pretend to measure the p-value. There was little point.

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

Retinitis pigmentosa is a strange disease.

In the first place, you don’t lose your peripheral vision such that there’s a neat little circle left in the middle. You lose it in patches. In my right eye, for instance, I still have peripheral vision on the right-hand side. But in the lower quadrant – nothing’s there. Describing this to friends and peers in a way they can understand is obviously difficult.

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

I received the results of my genetic test in January. Besides some fascinating tidbits about my family heritage, the pathogenic variant causing all of my trouble is evidently called RHO (c.68C>A (p.Pro23His)), which 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 there’s no cure, having retinitis pigmentosa (or macular degeneration more generally, which encompasses several other diseases too) places me in a global community of researchers and patients. There’s an online platform I was asked to join so I could learn about and evaluate clinical trials. It shows a dashboard of everybody (that we know of anyway) who is diagnosed with RP. Which is kind-of cool, albeit macabre.

Remarkably, I’ve so far met two people (organically!) who also have retinitis pigmentosa. I met one at my gym (of all places!) and another on LinkedIn. We instantly became friends. They’re far worse-off than I am. One has basically no field of vision remaining. The other has a little left, but he’s managed to have a great life/career anyway, which gives me hope. I’ll probably meet the criteria for “legally blind” in like one to three years (it’s impossible to know), but I’m basically there (i.e. mathematically one degree away) already.

I use a cane sometimes but generally don’t. To be blunt, I avoid using a cane as much as possible. I don’t want people to treat or perceive me differently. More precisely, I don’t want to deal with judging glares from people when they see me put the cane away (ask me how I know) because I only need it in certain situations. You know how people can be.

Nobody seems to understand:

assert ("cane" == "full-hog-pitch-black-lights-out-blind") is False

The percentage of blind people who can’t see anything at all is actually not as high as you may think. It’s like 18% of blind people altogether. The purpose of the sunglasses is roughly two-fold: give the eyes a break, and signal to others that your eyes are cooked so there’s no guesswork.

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

• I miss handshakes and fist bumps constantly.
• I bump into dogs and children.
• My shins are covered in bruises.
• Commuting on the train and walking around Manhattan are stressful. (I’ve never been more grateful to live in Greenpoint, Brooklyn)
• I (probably) won’t be able to read somebody’s feelings in a dimly lit room, like a bar or restaurant, unless they intimate them to me tonally/verbally.

In general, 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 tasks, like grabbing a straw from the bartray at a busy coffee shop without bumping into chairs or short people, have become accomplishments.

Then there’s the matter of my career.¹

I’ve earned the right to say it: I’m very talented at what I do and I work very hard.

I’ve had people candidly question if this anecdote is true: I reduced the runtime of a system from 55 hours to 7 seconds. Yes – that is true.

Finding the 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 was going blind – that I have a low-vision disability – and that there’s no cure abruptly changed that.

Being a spiritual-boomer, I never saw myself taking short-term disability leave. But, between August and October, I did. Not because I wanted to but because my productivity plummetted and I couldn’t focus on anything. My heart felt like pumice. Multiple coworkers encouraged me to do so. I tried pushing through. But I kept hearing variations of, “it’s times like this which are what leave are designed for”.

I wanted to trust my employer would understand. But, as I realized 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 been like – to experience a small sample of what I’ve been going through, that is – then here’s one 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. Don’t tell me what’s happening is really something else.

I kept walking.

I continued delivering at work. 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 also inducted into the AWS Community Builders program! I joked, smiled, and laughed with my friends. 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 (until now).

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

There was an unexpected, abrupt, and extreme relational rupture which occurred during this whole 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 was speculation. They never explained themself directly. 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 bear it. I had never experienced anything like this before.

This was a strange, confusing, and ineffable situation in the sense there’s very little 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 “off” – something I had no idea about when we met. Whatever the case, this experience added something like moral injury (I genuinely don’t know what else to call it) on top of everything else.

To experience something so bewildering and terrible – to find yourself erecting indomitable boundaries with somebody you thought was a friend, and to not even understand how you arrived at such an awful point – while my field of view narrows thrust a quasi-mythical quality into the whole experience/memory of this period of my life. 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 and slinking into neurosis, seemed like a great idea. In all cases, except for one, it was a great idea. Reconnecting with an old friend who I held in high esteem was supposed to raise my spirit, not test it.

I don’t know if they’re aware of my condition and how it’s impacted me. I’m not sure it would’ve changed anything. All I know is I don’t know what happened. Nobody does. I’m not sure even they could explain themself if asked. My friends and I just hope they stay away.

I’m not religious or into woo-woo-ology, but it was genuinely hard not to think at times like I was being tested by some cosmic entity who wanted to see if I would break. Like some twisted initiation I never constented to – and which our modern, positive, and affirming culture will no doubt insist I transmogrify/recapitulate in the form of ten things I learned.

I didn’t break. I passed muster. Flying colors. I refuse to sanitize/collapse my experience into feel-good bulletpoints, however, so demerits for uncooperativeness.

Being diagnosed with a permanently life-altering and incurable condition -> losing trust and faith in my employer -> experiencing an inexplicable, once-in-a-lifetime type of relational rupture – that’s a lot. Frankly, that’s rare. And not in the special, narcissistic sense of the word rare.

I will regret publishing this post. I already do.

This material is incredibly personal and vulnerable. I cannot control how this post will be read. Employers may read it. Or worse: skim it.

I’m leaving this post up anyway.

The public artifacts of my work are strong, but the specific context in which those artifacts were created makes them something else – a testament to my resilience, I hope.

We can talk about contributions at my job all day. Those accomplishments are certainly valuable. But they’re ineluctably abstract. Open-source projects – particularly projects which large companies actually use and depend upon, in some cases at an enterprise scale – offer deeper insights. They’re artifacts which can be dwelled upon in ways which extemporaneous conversation doesn’t make easy (or possible). Would you rather hear about a system I implemented or see one? Would you rather hear about a singular project or evaluate a whole ecosystem I’m gradually building in my free time and reach your own conclusions? Do you truly want what you say you want?

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

What does that say about me? Does it say something peculiar about life – metaphysical, phenomenological? Both?

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

Cheers to shots in the dark. Threnodies for maculae.