White Cane Awareness Day!

A photo of me and my daughter walking on a sidewalk. I am carrying my white cane and we both have umbrellas, even though the rain has stopped.

Today is White Cane Awareness Day, a day to celebrate a tool that, despite its simplicity, remains one of the most powerful for independent living and travel among the blind.

I got my first cane in 2015. It came with my Orientation and Mobility training, provided free-of-charge by the Commonwealth of Massachusetts when I registered as legally blind. I will always be grateful that I went blind in Massachusetts, because the state-run Commission for the Blind provides excellent services and training for blind residents who want to keep working or re-enter the workforce. They gave me assistive technology and Braille instruction before I even needed them, so that I would be prepared when I did. 

Also there, and also before I needed it, I received training in proper cane technique—when I’m in motion the cane is in motion, skimming the ground or tapping in front of my hind foot. I learned how to make sure an area was clear before I stepped up or down a curb, and how to navigate staircases, using my cane to sense the beginning and the end. I learned how to read the traffic patterns so I could gauge when it was safe to cross, and how to aim so I would end up on the sidewalk instead of the middle of the intersection.

 I walked for miles through the chilly autumn air, wearing a blackout blindfold. My instructor followed a few steps behind, sometimes offering correction or advice, but mostly letting me find my own way using my cane, my ears, and my memory as guides.

It was challenging, sometimes frustrating, but I’m glad I got that training when I did. 

In 2016 we moved to California, and the cane didn’t leave my bag for a year. It’s not only that I avoided using it. I knew our neighborhood and felt safe enough walking most places without it.

But throughout that year I had the growing realization that I should probably start using it more often, especially at night and in crowded places. Yet that thought also filled me with that potent mixture of pride and fear familiar to many of us who are losing our sight. It is one thing to learn how to use a white cane; it’s quite another to need to use it.

In 2017, I wrote a long reflection on the emotional struggle, the pride and fear that keep us from carrying canes and the reality of prejudice and discrimination that justify that fear.  It is hard to so openly wield this signal of blindness, especially since most of us have tried for years to hide our fading sight from others.

But pragmatism has won out, as it usually does. Over the last year, my cane use has gradually increased. I carry it most of the time now, outside the house and a few short routes nearby. I wouldn’t imagine going somewhere new and unfamiliar without it. 

In many ways, it’s surprisingly comfortable. I’m sure people stare, as Kristin pointed  out last year, but I don’t notice that. Mostly I notice the stress that it removes from my walk, since I don’t have to stay on high alert for trees and people that materialize in front of me, or obstacles that leap from nowhere into the path of my shins.

My three-year-old daughter takes it in stride. Sometimes she tries to take it in hand, too, but I think we’ve mostly broken her of that habit. She knows it’s “daddy’s stick” and asks for one of her own. I might buy her one.

There are a few funny things. If I’m walking with friends and take my cane out, they often start giving me tips and information about the environment.

“There’s a curb coming up.”

“Trash can on your right!”

It’s ironic, because I took the cane out to get exactly the sort of information they are now providing. It’s like the cane primes them, reminds them that I’m blind, and prompts them to offer advice, just when I stop needing it. 

Every year, I’m sure the cane will become more comfortable, more indispensable, a more natural extension of my arm and my sensory field. My white cane is part of my life now, necessary for the basic functions of life. When I think of it these days, I don’t fear the message it broadcasts to the world; I simply appreciate its utility and the freedom it brings.

I know that the cane is still a marker of my blind identity, and that that identity will certainly create difficulties for me in this life, but that’s not the cane’s fault. It’s just doing its job.

Happy White Cane Day, everyone! 

Notes on Traveling Blind from SBL 2017

A photo of the City of Boston from a very high vantage point.

That special time of year has once again come and past, when 10,000 scholars of Bible and religion gather for a long weekend of research presentations, nerdy conversations, and drinks with friends and colleagues who are scattered across the globe.

This year, the annual meeting of the American Academy of Religion and the Society of Biblical Literature met in Boston. Since it was just a stone’s throw from my former home in Waltham and Brandeis University, where I’m getting my Ph.D., I came in a few days early. It gave me a chance to stay with excellent friends, mete with my dissertation advisors, practice yoga with my first teacher, and eat pancakes at the best breakfast spot in town. Then I found my way into downtown Boston for four very enjoyable days of conference.

Between Waltham and Boston, it was a great opportunity to test and assess my orientation and mobility skills.

You see, in addition to its value as a professional conference, SBL gives me a regular chance to reflect on how my declining sight affects my ability to navigate unfamiliar locations and situations (see last year’s entry here). Most of the year, my life is pretty routine. I take familiar streets and familiar trains to familiar places—not a great challenge. And on most other big trips, I’m accompanied by my family. SBL turns that all on its head, as I find my way solo through busy airports, navigate public transit systems, and search for rooms in cavernous and labyrinthine conference centers.

Last year, the big transition was using my cane throughout the conference, even though I only felt I needed it for safety at night. This year, I can’t imagine having gone without it. Boston is a city of confusing streets, more confusing subway stations, and entirely oblivious speed-walkers—the only downside to my cane was how often sighted people tripped over it.

Overall, though, I’d say this year was a navigational success. I got everywhere I needed to go—perhaps with an extra wrong turn or two, or three, or…

But my point is, I got where I needed to go.

The biggest new challenge this year was balancing my desire for independence with getting help when necessary. Most of the time, I like to figure things out on my own. And most of the time, this is a good thing. I find that bumbling through a confusing route helps me internalize it better than if I’m guided through, and that makes navigating it the next time much easier. Sometimes, however, the time I’d spend finding my own way is just not worth it, and it makes more sense to ask the nearest person where I am and which way to go.

But asking for help is like that proverbial box of chocolates. Or maybe more like a box that’s part chocolates and part over-bearing strangers who just grab right on to you and start dragging you off in god-knows-what direction. And part older European gentlemen who are very concerned that you are going to be all right.

The point being, you never really know what you’re going to get. Sometimes asking for directions brings you into contact with truly delightful people you never would have met otherwise. Other times, it turns into a very unpleasant experience that tests your patience and civility.

One time, as I stood looking confused at a fork in the road, a man came up and asked if I was headed to the conference center (how did he know? I was wearing the scholar uniform of khakis and a corduroy jacket, of course). I said yes, and he asked if I’d like to walk along with him. We spent the next few minutes discussing his upcoming commentary on the Book of Leviticus and my dissertation on psalms, until we reached the center and split off to our respective events. Perfectly pleasant.

Another time, I was trying to find a group of friends in a crowded Italian market/restaurant. I asked an employee where “Il Pesce” was, and without a word he grabbed me by the shoulder, pulled me across the market, and let me loose with just as little ceremony—in front of “La Pasta.” Luckily one of my friends came to fetch me, or I may never have found them.

Another time, an elderly man asked if I needed some direction. When I asked him to point me in the direction of the exhibition hall, he grabbed my arm (much more gently than the last guy, but still) and guided me all the way to the hall, even though I kept telling him I was ok on my own from here (and here, and here). I just couldn’t shake the guy!

I know this might make a lot of you nervous. A lot of people feel uncertain about how best to help visually impaired people and people with other disabilities. “Will they think I’m overbearing, rude, or awkward? Will they hate me for trying to help?” This is understandable—it’s a complicated issue that I hope to dissect more in future posts. But based on my experience so far, I have thought up a few tips that I think will serve you well in deciding how and when to help:

  • Don’t be afraid to ask a blind person if they know where they’re going. I know a lot of good-hearted people who don’t offer help because of the fears mentioned above. I’ll just give you permission: it’s ok to ask a simple question like “Are you all good?” or “Do you need some directions?”
  • BUT, believe the person if they say no, and believe them if they tell you they only need one piece of information, and don’t feel bad walking away once you’ve told them what they asked for.
  • In general—and this is good advice in all of life—don’t just grab people. Exceptions are allowed for imminent danger: falling pianos, quicksand, etc. Otherwise, ask before touching.
  • Better yet, ask if the blind person would like to take your arm. This is best practice for what is called sighted guide, but understand that not all blind people like to take an arm, or at least not all the time. Many of us prefer to walk beside you or a half-step behind, and walk independently with our canes.

Basically, let people tell you how to help them. Listen and trust that they know how to live and function in their own bodies.

On my end, I’m realizing I need to develop my ability to clearly and effectively communicate my needs to those who wish to help. This can be frustrating and difficult in the moment, but the more I think through my experiences and talk with people, the better I get.

Any other questions about how to interact with blind folks? Any other tips from blind travelers? Let me know in the comments!

The Hardest Part

There’s a saying among people with Retinitis Pigmentosa: “Being blind isn’t hard. Going blind is hard.” I’m not sure that being blind is easy, exactly, but I do believe that this season, the transition between sight and blindness, will probably be one of the hardest of my life.

Part of this is the basic sense of loss, and loss of control. Something I once had is disappearing, and there is nothing I can do to stop it. I don’t know—can’t know—what I will be able to see next year this time, or five years down the line. It’s hard to literally watch my vision spark and fizzle away. 

But that sense of loss isn’t really the hardest part. The hardest part is just how much work it is to go blind. Because I’m not just losing my sight; I’m losing all of my habits, routines, and processes that rely on it. 

Every time I use my eyes to locate something, track something, or assess something, to organize or to remind myself of something. Every task that relies on even the tiniest bit of visual information-gathering. All of them have to be reconsidered and relearned.

Because of course there are different ways to do most of these things. I can replace my lost abilities, can replace the visual information with information from my other senses or my pieces of assistive technology. But it means changing the way I’m accustomed to doing almost everything I do.

It means adaptation, and adaptation is hard.

Learning—at every turn, in every part of life, every day—is exhausting.

And demoralizing. All of these things I’m learning? They are things you’re supposed to learn as a child, not in your thirties. Actually, they’re things I did learn as a child. I learned them at two months, when I smiled back at faces that smiled at me, at three months when I grabbed a toy and shook it for the first time. I learned them  when I sat up, crawled, took my first steps. When I learned to read the menus on our first computer, and went from there to reading chapter books, novels, and a list of languages stretching back to the dawn of history.

I learned them over the course of a lifetime, one skill building on another. Skills so basic and so foundational we barely think of them as skills at all. Skills that need to be mastered to the point of effortlessness so we can focus our energy and attention on the next, greater height. Now much of that knowledge and skill is becoming useless. 

Many days, I feel like I’m spending all of my energy digging myself out of a hole, or bailing out a leaky boat. Like I’m running as hard as I can just to get to the starting line—never mind the finish line. 

I miss the feeling of progress, the feeling that the work I’m doing is moving me forward, instead of just keeping me from falling behind, or falling apart. 

And when will it end? RP is a long and slow disease. I’ll be living in this process for years, for decades even, weaning myself off of vision in bits and pieces, one task, one process at a time.

It will be hard, grueling at times, but the alternative would be much, much worse. Refusing to face the difficulty head-on and avoiding the hard work would lead somewhere worse than daily exhaustion. It would lead to stagnation and despair, and that’s something I refuse to tolerate.

So I’ll keep working, facing the days when simple tasks become suddenly arduous and stressful, finding new ways to do them, and then not giving up until they are mastered again. And hopefully, with each new adaptation and each new skill, it will get a little easier, until someday I reach that place where I can say “Going blind was hard, but being blind isn’t.”

The Value of Photographs

An image of my daughter at the kitchen table, grinning over her breakfast. She is in striped pajamas and has wild, messy bed-head.

I spent a long time looking at this photograph today. Many minutes, because I had to, and because it was worth it.

Kristin took it at breakfast this morning. I was sitting right there, and I was enjoying the moment, but seeing the photograph was a different experience entirely.

In general, I look at a lot fewer photographs these days. It takes me longer to make sense of what’s going on in them. The colors and lines just won’t resolve into recognizable objects the way they used to. Sometimes it takes a few seconds, or a few minutes before I realize who or what is in a picture.

But there’s a flip side to this, because I don’t see life as quickly as I used to either. It takes time for me to make sense of what I see, for my brain to construct an image out of the faulty and partial information my eyes pass along. And life doesn’t always stick around waiting for me to make sense of it. 

My daughter is a toddler right now, and she doesn’t stick around long enough for almost anything. Sometimes, if the light is just right and at just the right angle, and she moves in just the right way so she’s framed in it perfectly, and of my eyes feel like behaving themselves at just the right moment, I get this clear, fleeting glimpse of her face, and I get to see just how beautiful she is. These moments stick in my mind, but they are rare, and all too brief. I miss so many details so much of the time.

But when Kristin takes a photo like this—a crystal clear, stunning capture of a living moment—The world slows down. It stops, allowing me all the time I need to pore over the scene, working out and appreciating every feature and every nuance. 

I know that a day will come when I won’t be able to see her this way, to know her face in this much detail, even from photographs. And I know that some day after that, I won’t know what she looks like at all.

And I will miss it.

It won’t affect my love for her, or my care for her. I will still play with her and laugh with her and teach her and share life with her. I will know a million things about her that are more important than her physical appearance.

But I will still miss it.

I’ll miss that shining grin and those sparkling  blue eyes, those looks of joy, inquisitiveness, mischief, and wonder.

So for now, I will treasure the photographs, and I will gladly take all the time I need to etch every detail into my mind and into my memory.

My Vision in Experiential Terms

(This is part two of a series on my vision at the start of this blog. To read the first part, see My Vision in Medical Terms.)

Image of an old TV set. It is displaying fireworks. The color is muted and the picture is grainy. A metaphor for my vision.

In the last post, I described how my photoreceptor cells are dying one by one and in turn taking with them what remains of my vision. I wrote that photoreceptors are like the “eye’s pixels,” and some of you may have imagined that a retina full of dead photoreceptors looks like an iPhone screen full of dead pixels. It would be nice if that were the case, but the truth is much more bizarre.

The Low-Res Retina

The pixel analogy holds in one important respect: fewer cones and rods mean less detail, just as fewer pixels on a screen do. In a sense, I was born with lower resolution vision than most. Think of an old, first-generation color TV from the 1950s. Broadcast resolution was low, and the images that showed up on these sets were blurry and indistinct. In this analogy, people with normal vision are like the latest generation of iPad, which have about nine times as many pixels as a broadcast TV. The difference is stark.

Comparing retinal resolution is the concept behind the common method of expressing visual acuity as “20/xx.” This method compares the distances at which two people can see the same object. The first “20” represents the patient, or more precisely, text the patient can read from 20 feet away. The second number is the distance from which a normally-sighted person can read the same text. Since people with a higher resolution can see something clearly from further away, the second number is usually higher for RP patients.

The last time I had my eyes checked, about a year ago, my right eye (which is my better eye) had an acuity of 20/250, meaning I can read at twenty feet what a normally-sighted person can see at 250 feet. To put this in more concrete terms, if there was a sign on the goal line of an American Football field, and I could read it from the 10 yard line, a normally-sighted person could still read it while sitting in the stands behind the opposite goal post. Keep in mind that this is with glasses.

Mind the Gaps

Poor resolution isn’t the only problem with my vision. There are also the gaps left by groups of dead photoreceptors. On a phone screen, dead pixels don’t give up their spot. They leave little black squares, constant reminders that there is a small part of the image you cannot see. The brain, on the other hand, doesn’t much like admitting there are gaps in your vision. It tries to fill in these gaps as best it can to create a cohesive picture of the world.

Have you ever tried that experiment where you use your finger to find your blind spot? You close your left eye and stare at a dot or letter or something on a piece of paper. Then you put a finger on the dot and slowly move it to the right, while keeping your eye on the dot. When your finger gets an inch or two away from the dot, it disappears!

This happens because everyone’s retinas have a barren spot with no photoreceptors where the optic nerve leaves the back of the eye. Your brain doesn’t like to let on that it’s missing anything, though, so usually it fills in the hole with the image from your other eye. Even when one eye is closed, you don’t see a big blank space, Your vision seems continuous; your finger is just missing.

Now imagine that, instead of one blind spot in each eye, you had a few dozen spread out across your visual field. Some are big, some are small, but your brain tries to hide them all.

I have a lot of gaps in my vision. In fact, my last visual fields exam said I had “central vision with peripheral islands,” meaning it might be more gap than vision. Most of these, my brain tries to hide from me. When I try to read long words with my eyes, some letters will often just not be there. I’ll have to look again or move my eyes slightly to see what I’m missing. The gaps across the bottom of my visual field explain my antagonistic relationship with “Wet Floor” signs, which have cause me much more grief than wet floors themselves ever have.

One hole has finally developed that my brain cannot hide. It is located near the middle of my vision in my left eye, probably spreading out from around the optic nerve. It looks like a smudge of something  on my glasses, with blurry edges that fade into clearer vision. It is always there, but I think my brain still tries to hide it away. In the daytime it is white or light grey, but at night it goes dark. It’s not very good camouflage, but it still tries.

The Fireworks

A screen with dying pixels fades into darkness, and many people think of blindness the same way, as vision fading into darkness. The Bard himself described “looking on darkness which the blind do see.”

Sorry Shakespeare, but going blind from RP is a constant chaos of color and light,

I mentioned some alarming visual phenomena in the last post, which I started to notice when I was working at an archaeological site in Israel. After a full day of digging in the blazing sun, we would go back to the air-conditioned hotel to wash up and eat. In the dim, cool room I would notice intricate, tightly-packed patterns that flashed and twinkled in my left eye. Sometimes it would look like the pattern of bumps on a basketball, sometimes like raindrops on glass. Other times it looked like a repeating tile mosaic, In every form, the pattern would flicker and flash brightly and gradually fade.

To this day, my left eye provides a near-constant psychedelic light show. The right has joined in, just a bit tamer. The patterns are still there, joined by other flashes, sparks, and twinkles. Electric whips crack across my vision. Fireworks blaze and pop, sometimes so large they blot out everything else. My entire field of vision strobes very quickly from bright red to bright blue, like I’m staring at flashing police lights from about six inches away. It must be a real party in there, because someone even turned on the smoke machine. Mist covers everything some days, like a thick morning fog.

The colors are brilliant, even beautiful, but of course it’s not a party. It is the anguished thrashing of half-dead photoreceptors, the aimless firing of bored and bereft neurons, the brain trying to synthesize an image when the signal is lost or senseless. It changes every day, every hour, every minute. I don’t know today what the world will look like tomorrow, this morning what it will look like in the afternoon, at 10 AM what it will look like at 10:05.

What I see—what I can and can’t see—is impossible to predict, difficult to communicate, and risky to trust. Vision is still useful, and many days I am grateful for what I have left, but it is not as useful as it once was, and far less dependable. I can no longer rely on my old ways of doing things. I have to change and adapt to keep moving forward through the mist and the fireworks..

Appendix A: Videos!

As I was writing this, Kristin reminded me of a video I had showed her that she found really helpful in understanding what RP looks like.

Aaron Morse made this video called “How I See the World with my RP Eyes” (bonus: cute baby!). His tunnel vision is a more classic pattern of RP than I have, but it gives a good general idea. Another YouTuber simulated some of the lights he sees in “My RP Visual Flashes.” I found it interesting that he too sees tightly-packed repeating patterns. Unlike mine, his are very angular.

(Photo credit: King-of-Herrings)

My Vision in Medical Terms

(This is Part One in a series of posts about the state of my vision at the start of this blog. The next post will deal with my personal experience of my vision. There’s a lot of technical medical information in this post, but I’ll try not to make it too boring.)

I have had very poor eyesight since birth—poor enough that I was deemed “low vision.” I got my first pair of glasses before I was two. No one could identify exactly what was wrong with my eyes, though, and not for lack of trying. My parents carted me around to practically every expert in the state of Colorado, and none of them could provide an answer. To all appearances, my eyes were perfect; I just couldn’t see well. The closest approximation of the truth was probably given by Dr. Alexander, my favorite childhood optometrist, who said “You may just have been born with fewer cones and rods [retinal photoreceptors] than other people.”

For the first thirty years of my life, this was about all that could be said about it. My vision was poor, but it seemed at least to be stable. In 2012, though, while I was working at an archaeological excavation in Israel, I started to notice strange visual phenomena that prompted me to visit an ophthalmologist when I returned home to Massachusetts. This ophthalmologist gave me a preliminary diagnosis of Retinitis Pigmentosa and referred me to the Massachusetts Eye and Ear Infirmary for confirmation.

The doctors at MEEI took high-res photographs of my retinas and subjected me to a battery of tests, including color discrimination, visual fields, dark adaptation, and the notorious ERG. The ERG, or Electroretinograph, measures the electrical activity of your retina (like an EKG for your eyeball. You put on a giant contact lens with electrodes implanted in it, and stare at a strobe light for what feels like an hour (probably five minutes). People with healthy eyes produce a graph with a nice wave of ups and downs. Mine? Flatline.

A flat ERG response is the hallmark of advanced Retinitis Pigmentosa. There’s no measurable electrical activity going on in the retina, but most of us can still see to some extent. As the doctor told me, “it’s like there are people who don’t register a pulse, but they’re still up and walking around.”

So what is this strange form of retinal zombiism known as Retinitis Pigmentosa?? There’s a boilerplate description that appears with a little variation across the internet, and goes a little something like this:

Retinitis Pigmentosa (RP) refers to a group of inherited diseases causing retinal degeneration. The cell-rich retina lines the back inside wall of the eye. It is responsible for capturing images from the visual field. People with RP experience a gradual decline in their vision because photoreceptor cells (rods and cones) die.

(I took this version from the article at http://www.blindness.org/retinitis-pigmentosa — the rest of the article is quite good also, and the Foundation Fighting Blindness is an excellent resource for learning about retinal disorders and new research)

Photoreceptor death explains the diminished ERG response. Fewer cells means less electrical activity, and a weaker signal traveling from the eyes to the brain. You can imagine these photoreceptor cells as the eyes’ “pixels”—the fewer there are the less detail there is in the image. Healthy eyes contain over 120 million photoreceptors—way too many for the optic nerve and brain to handle at once, so much of the signal is just discarded. For people with RP, vision loss only begins once the number of photoreceptors falls below the maximum number the brain can interpret at one time.

A hand-drawn graph showing the loss of photoreceptors over time in RP, as it relates to the capacity of the optic nerve and brain. There is a horizontal line representing the amount of input the optic nerve and brain can handle at one time. A second line starts in the upper left and slopes downward. It crosses the horizonatl line about halfway and ends in the lower right. This line represents the number of photoreceptors that someone with RP has, which decrease across their lifespan.

Graph of photoreceptor loss in RP

This explanation is a bit simplistic, since degradation does not occur evenly across the visual field. Most people with RP develop dead spots in some areas of their vision, while other areas remain relatively clear for much longer. In the majority of patients, degeneration happens from the outside of the retina in. They lose their peripheral vision and night vision first, and only lose their central vision in the final stage of the disease.

Since my vision has always been poor, I was probably born with a reduced number of photoreceptors across the board, as Dr. Alexander surmised so many years ago. That means my graph might look more like this:

A second hand-drawn graph representing my personal case. The same horizontal line is there representing the brain/optic nerve capacity, but this time the line representing the number of photoreceptors I have starts below the line on the left and slopes gradually downward toward the bottom right.

Graph of how I imagine my photoreceptor loss

Now more of my photoreceptors are dying, but not in the usual pattern. I am losing cells from the center of my retinas outward. My detailed central vision is going first, and the periphery will follow.

It may seem strange that I stray so far from the norm, but this leads to an important point: RP is not one disease, but many.

When I first started seeing that standard description of RP four years ago, it did not mention a “group” of inherited diseases, but in the past several years it has become very clear just how many forms RP can take. It can strike at any age, progress at any speed, and carry with it a number of other symptoms. Some of the nastier varieties, like Usher’s Syndrome, cause deafness as well as blindness. They all culminate in the death of photoreceptors, but can differ substantially in how long this takes and the path they take to get there.

The variety in RP patterns probably results from the variety of its causes. It is commonly considered an inherited genetic disorder, but the details get pretty complicated. Genetic testing of RP patients has linked the disease to mutations in more than 250 genes at this time, and that number keeps growing. Certain mutations are quite common and well-understood, while others are rare and more tenuously linked to disease symptoms.

With this many genetic links identified, it is a startling fact that the genetic cause of RP cannot be determined in about 45% of patients. Almost half of patients’ RP is caused by either an unidentified genetic factor or something else entirely. This is my lot—despite the cutting-edge genetic testing I received from the Ocular Genomics Institute in Massachusetts, a genetic cause for my RP has not been found. 

It is possible that an as-yet-unidentified gene mutation or combination of gene mutations is causing my vision loss, but it could also be something completely unrelated to genes. No one else in my extended family has suffered from any similar malady, which points away from an inherited cause. It could have been some accident of development in the womb, a vascular event that starved my retinas of oxygen or nutrients at a critical moment. At this point, who knows?

So have I learned anything from being diagnosed with RP? I have confirmed the suspicion that I don’t have enough photoreceptors, and have learned that more are dying every day. I’ve learned that this condition is progressive, and my vision will continue to deteriorate. I have passed the boundary into legal blindness, and without medical treatment I will end up totally blind at some point in the future. This won’t happen right away—my last photoreceptor may not blink out for another twenty or thirty years— but with the current state of technology, it is inevitable.

So it’s a good thing technology changes. This diagnosis has also clued me in to a world of exciting research on retinal deterioration and rejuvenation. There is nothing on the market right now that can halt or stop what is happening in my eyes, but research teams are working on treatments and cures using gene therapy and stem cells. All of these are still at least 5 to 10 years away from widespread deployment, but clinical trials are going strong. Hope may not be right around the corner, but it is on its way. 


(Note: The information in this post comes from my research on the topic of RP and from personal conversations with retinal specialists, I am not an expert in the field, so there may be a few inaccuracies. I alone am responsible for all of them and I welcome corrections!)