Blindness.

Blindness

The title’s true. I’m not fully blind, but severely visually-impaired — and for most functions of life it’s more accurate and sensible to just say “I’m blind.”

In August 2019, after having graduated high school just a few months prior and turning 18 shortly afterward, I was getting ready to get a driver’s license so that I could function as a perceived-normal member of American society. I was planning to visit the DMV a few days after I had a scheduled optometrist appointment to get a new pair of glasses. My optometrist’s office had moved to a new, much fancier, building with new machinery and testing capabilities — and as part of the check-in process they put me through their new retina-scanning machine.

All was normal for a while until I was sitting in the exam room with the actual doctor, who said something along the lines of “before you go… I wanted to talk to you about something I noticed on your retinal scan.” The doctor started to tell me about this super scientific-sounding disease named ”retinitis pigmentosa” and explained vaguely how I might be affected.

No emotion hit me right away. I didn’t really know what to think about what I had just been told. It was now up to me to follow up with an ophthalmologist and learn just how badly this was going to affect my life. He advised me not to start driving if I hadn’t already, and to do research online & consult with experts on what to expect. Needless to say, over the coming days and months, I realized just how much of a bombshell this news was for me.

I never ended up going to the DMV.

Reckoning with reality

In the months following that appointment, I was feeling down for quite a while — about 3 months — before pushing it aside with some good old-fashioned toxic optimism.

• Hey, at least I don’t need to worry about the expenses of car ownership!
• It’ll be an interesting topic of conversation!
• There are worse things to suffer from.
• At least I have some warning before it gets worse!

While some of those things are truly benefits in a way, this overly positive mindset about what I’ve struggled with my whole life denied me the opportunity to actually realize how badly I was affected by it and to prepare for things I really did need to be ready to handle. Nonetheless, I pushed it down for a while. Rather than accomodating my already-horrible vision wherever it would help, I pretended like nothing was wrong with me and only told people what was up once it was painfully obvious. I spent the last few years scared of the idea of someone recognizing me as blind — scared of confronting reality. Deciding that I wanted to avoid reality in this way led me through a strange bumpy road of bumping into people, tripping over wet floor signs all the time, and even at one point needing to hold onto my friend’s backpack because I had such a hard time navigating an unfamiliar mall.

Canadian perspective

In early 2022, I went to Canada to visit my friend Jamie in Vancouver. One of the things I noticed while walking was that crosswalks & any segment of the sidewalk that crosses a place where cars drive (such as garages) have straight lines carved into them, which actually indicates the direction of safe travel for someone navigating with a white cane. In the US, I’ve never seen anything like it — if I were fully blind it would be incredibly more helpful than the little dotted panels we have. All that those do for a blind person is signify that a crosswalk exists at this location — and that’s where the usefulness ends.

Look at the liiines! A white cane user familiar with this pattern would easily know to be wary of cars crossing here.

Boring, uninformative, yuck. Not even present on most crosswalks, so this is as good as it gets. Sometimes they’re oriented diagonally and might direct a blind person to walk into the line of traffic!

Socially, I definitely noticed that Canadians are more understanding of the concept of partial blindness. I’ve gotten several weird looks and comments from people in the US who just don’t understand that you can have some vision without losing your sight entirely. One such comment that I remember the most was, “You confused me for a second! You’re carrying a white cane yet you’re wearing glasses.” I was already in a bad mood at the time so I responded with a short, “Yeah, I have partial sight. Vision’s not just on-and-off.” The guy seemed to understand after that and realized that he may have upset me with the comment, so he quickly ran off with an “OK, have a nice day!” That interaction has become a core example that I like to bring up to people when they ask about some of the worse things I have to endure sometimes. In fact, fear of this type of judgment is exactly what I was talking about earlier.

Can you do anything about it?

A lot of people’s first reaction when I tell them what I’m dealing with is to ask if there’s any sort of cure or treatment that I can get. Sadly, the answer to that is a plain and ugly no. The disease itself is [considered rare] and, while there’s plenty of research happening at the moment there’s nothing available to me as treatment. Since retinitis pigmentosa is genetic, I’ve had plenty of gene testing done — all of which was entirely inconclusive. Yawn.

A glimmer of hope

There’s a possibility that a cure may come available within the next decade or two, since gene therapy is already being tested on people with retinitis pigmentosa to allow the retina to stop killing off its cells. (Oh, did I mention that that’s how it works? My retina is literally programmed to kill off its cells over time. How fun, riiight? /s) Unfortunately there’s no way I’m eligible for any trials or finalized gene therapies until we know which gene would need to be targeted. I donated some blood to a university research study so that they can pool my genetic information with other people who are affected by the same disorder and aren’t sure which gene it’s caused by — that way they can find any currently-undocumented overlaps in bad genes. Hearing anything back about that is just a waiting game for now, though.

Coping, meanwhile

In the time until any sort of treatment comes available for me, I have nothing left to do but to work with what I’ve got. I bought a white cane that I use mostly for signalling to those around me that I have issues navigating. Due to the nature of my vision, where I have a tiny central area where I can see just fine (hence wearing glasses), navigating non-busy areas during the daytime is typically trivial. When I’m going to an airport, or I know I’ll be in a really busy place, the cane comes out as a way to tell those around me that I’ll need some space and maybe even some assistance depending on how hard it is to navigate where I’m at. It definitely gets awkward

I’m considering working to get a guide dog at some point, as it would be so much less awkward than carrying an idle cane that I’m typically not actively looking — which definitely draws some attention. As much as I’m more of a cat person, it’s impossible for me to deny the help that a dog trained for this specific case would give. It would also make life at home less lonely and give me all the companionship that comes with having a dog, minus the part where you can let strangers pet ‘em.

Life will go on, even if my eyes don’t come along for the whole ride. I’ve finally started to find solace in facing my problems rather than running away from them.

Be grateful for what you’ve got.