Rumster

If this was an AA meeting I’d feel comfortable saying “Hi, my name is Layne and I’m blind,” then I’d pause for a moment to let the other attendees say “Hi, Layne.” That’s what’s expected at AA.

But this isn’t AA, and just starting with my name and the fact that I’m blind feels inadequate. I told Rumster I write best when I know nobody else will ever read it. No writer’s block, no expectations or pressure on me to dazzle the audience with my wisdom — or, more accurately, the noise floating around my head I mistake as wisdom.

But I haven’t got anything better to open with so here it goes:

Hi, my name is Layne and I’m blind.

That really feels weak. I’d honestly skip the rest of the page if I was reading it, but I can’t because I’m writing it. And saying it feels weak also feels weak, like I’m making excuses for not blowing readers away with an opening line capable of hooking Stephen King. But I’m not going to dwell on it, I’m just going to hop right in.

First, let’s get some things established. About me, about this space where I’m writing, and about why I’m doing this.

I’m 54 years old, a white guy living in Texas, happily married for 30 years and the father of eight kids. In time I’ll share more about being 54, about benefiting from white privilege in a Confederate state, about the secret of being crazy in love for 30 years, and about the things I’ve learned raising kids. They’ll each get their own blog posts here in the future.

But I didn’t get asked to do this because of any of those things. I got asked to write this because I’m blind. Rumster and a few others keep telling me I have a way of humanizing the blind experience when I write.

I’ll admit straight up I don’t feel I can do this justice. When Steven Speilberg approached John Williams to do the score for Schindler’s List Williams tried not to accept it. He read the script and told Speilberg the story deserved a better composer than him. Speilberg answered “I agree. Unfortunately they’re all dead,” so John Williams composed the soundtrack.

I’m not the John Williams of writing, but telling the story of the blind experience is every bit as necessary as telling the story of the Holocaust. Someone needs to tell our story.

People are telling it. I don't want to give the wrong impression. Molly Burke tells it on her YouTube channel. r/Blind tells it every day on Reddit and on Discord. Lighthouse and NFB tell it on their web sites. Hundreds of people tell it in blogs every day. Thousands of us live it each moment, walking testaments that life without eyesight goes on. Rumster thinks I should have a voice in the story, too.

You might not be familiar with Rumster. He’s the creator and admin on the r/Blind subreddit, an online social media destination for blind people. Today’s story is the story of how I met him.

My vision started getting weird in January 2020, and yes, I’m aware of the irony. 20/20 in 2020. At first I thought it was just old age creeping up on me, but it deteriorated much faster than I thought it should, so I went to my optometrist for a check up and a new prescription.

Quick side note — my optometrist is a lovely woman who did me a big favor ten years ago. She didn’t remember me when I went back in to see her in 2020 but I told her the story of how she helped me and how much it meant to me at the time. She didn’t remember any of it. I’ll never forget any of it. One day I’ll tell that story, too.

Covid 19 was just hitting Texas back then. The toilet paper shortage would begin a week or two later. Remember that? They told us not to shake hands to keep from spreading the virus but I figured if there’s a toilet paper shortage going on I ain’t shaking hands with anybody anyway. We were all self conscious wearing masks in stores. The only mask I had at first was a black baklava and I thought I must look like a robber in every store I entered.

I wasn’t wearing the baklava when I went to the optometrist. I was in a cloth mask that fogged up my glasses by then. That’s an important detail because part of the eye exam involved sticking my face into a machine that looked like a VR headset and clicking a button on a mouse every time I saw a little light flash inside the headset. The optometrist said “When you see a light flash click the mouse.”

I waited. Nothing happened.

She said “Go ahead and click when you see the lights.”

That’s when it dawned on me the test had already began and I wasn’t seeing anything.

When the test was over the optometrist nervously said “I forgot you had your mask on! It probably fogged up the machine!” Saying this gave us each a way out, I guess. Her job was writing prescriptions for eyeglasses and contacts, not diagnosing genetic diseases of the retina. She’s not responsible for thinking I’d fogged up the machine.

My uncorrected vision was 20/20 in my left eye and 20/25 in my right. It was inconceivable to me my acuity could be so good but my peripheral vision be so bad, so I accepted her explanation of a fogged up machine. I knew much less about genetic diseases of the retina than she did.

Yes, I’m using the word inconceivable deliberately. The idea I was blind but still had 20/20 visual acuity didn’t cross my mind. It couldn’t. It couldn't because I hadn’t realized blindness encompasses more than just acuity and darkness. I wouldn’t realize until much later I was probably already legally blind back then but didn’t know it.

I left her office with a new prescription but without my questions really answered.

A few months later I met with a retina specialist in what I can best describe as an assembly line eye clinic. Hundreds of people visiting half a dozen specialists who were trying their hardest to get us in and out as fast as possible. It was a dehumanizing, discouraging, unhelpful experience and it cost $600, but I did leave the clinic with a referral to see Dr. Rabin.

Dr. Rabin restored my faith in ophthalmology. He and his team of students spent hours with my wife and I, explaining the reasons for each test and discussing the results with us in simple English. If you’re in need of retina care in San Antonio I enthusiastically recommend Dr. Jeffrey Rabin.

One of the tests he performed involved taping a bunch of wire leads to my face to detect electrical current in my brain. Once the wires were hooked up I stuck my face in another VR headset type machine and stared at a center point while tiny lights flashed around me. At the end of the test I was shown a scatter plot diagram of the results. Black dots covered the printout, with a small cluster of red dots in the center. Each of the dots mapped the location of a flashing light I’d been shown. The red dots in the center were flashes corresponding to electrical activity detected through the wires taped to my face.

My field of vision was tiny. Tiny as in 12 degrees horizontal and 8 or 9 degrees vertical.

Tiny as in hold your arm straight out in front of you and hold your hand up. Spread your fingers apart. Stare at your middle finger. When I do this I can see my ring finger, my middle finger, and my index finger. Both my thumb and my pinky are outside my field of vision.

Tiny as in keep your arm outstretched but twist it so your fingers are pointing sideways instead of up. Now I only see two fingers, not three, because my field of vision is smaller up and down than it is from side to side.

I will get into the gut punch of realizing how small my visual radius had become in another blog post later. I’ll explain why I didn’t realize my field of vision was shrinking until it had already gotten so small, too. But I don’t want to waste too much time on the details yet — I’m still trying to get to how I met Rumster. Details are coming, I promise. Unless Rumster pulls the plug on this. My vanity hopes he doesn’t. My insecurity hopes he does.

That first meeting with Dr. Rabin was the first time I heard the words “retinitus pigmentosa,” but I’m trying not to think about that right now. I can’t help it — looking at the scatter plot test results was a traumatic experience. Even writing about it is making me emotional. Unwelcome thoughts keep popping into my head and since I’m a stream-of-conscience writer they’re finding their way onto the page.

Another thing to know about me — I’m a terrible editor. I seldom edit out little random thoughts that weasel their way into my flow. Most of the time I don’t even proof read.

Don’t worry, we’re almost to meeting Rumster.

Thanks to Hollywood there aren’t too many experiences in life that catch us with no preparation. Did a loved one die? We’ve seen loved ones die in movies. Did your spouse cheat? We’ve seen it on tv. Did your boss take credit for your idea? Did you wreck your friend’s car? Did you spill a drink on your date? Did your friend come out of the closet? We’ve seen Hollywood go through all that. We know what we’re expected to say and what we’re expected to do.

We haven’t seen Hollywood go blind. We don’t know how we’re supposed to act when it happens to us. We don’t know what we’re supposed to say. Or how to feel. The experience was so unusual, so novel, that I had no idea where to begin. But I’d been on Reddit for a few years so I began there. There seems to be a subreddit for everything. Maybe I'd find a subreddit for being blind.

When I started lurking on r/Blind I told myself I was looking for fellowship and camaraderie, but remembering back on it now I think I was looking for instructions on how to act and what to say and, most importantly, what to feel. I was looking for everything on how to go blind I hadn’t found in television or movies.

I lurked for about a month while I waited for the results of my genetic test. I’ve never lurked before — when I find an internet community I like I jump right in. But r/Blind felt different. I didn’t feel blind enough to join the conversation. I felt very much like an outsider looking in at a group I might someday be qualified to join but I still had enough functional eyesight to feel like an imposter in r/Blind.

Once, a couple years ago, I followed a Reddit rabbit hole and ended up on an active but relatively secret subreddit for sex workers. I read their conversations, how they hated the job and hated pretending they like it. How they checked on each other and kept each other safe. Which drugs they took to make the work bearable. I’m sure you understand why I could never post there. It wasn’t my world. It belonged to them. I was an intruder. I never went back.

But I kept going back to r/Blind. I didn’t post because I had nothing to offer, no credibility with which to offer it, and no back up plan for when somebody really blind tore into me for trespassing into their world. Any feeble claims I could make about my reduced field of vision could be shredded by someone blind from birth accusing me of stealing the sympathy rightly belonging to them.

I was afraid.

As this blog goes on you’re going to discover I’m often afraid. I don’t like confrontation and agree to things I probably shouldn’t to avoid it. But I think the fear I feel makes me a more honest writer. After all, people who know me will read this, and if I haven’t told the truth, guess what? Another confrontation.

It took a month to get the genetic test results back. One doctor filled out a certificate of legal blindness for me while the other doctor read the test results to me. My field of vision is only about a quarter of what’s considered legally blind. I don’t remember much of the meeting after that. Funny how a doctor in a white lab coat saying “You’re legally blind” makes you unable to concentrate on the rest of the meeting. That, too, is for another blog post.

Armed with my newly issued certificate of legal blindness I finally had the courage to join r/Blind. A little while later I wrote my first post -

I mowed the lawn for the last time this morning

I don’t know if this is a rant or a vent or a scream for acknowledgement in a cold Universe, but here it goes.

I mowed the lawn this morning. I probably missed a lot of spots I just couldn’t see. The shady areas under the trees were too dark for me to see what I was doing.

The part of Texas where I live is in a drought so I haven’t had to mow much this year. I haven’t mowed the lawn in about a month until today. It’s astonishing how much vision I’ve lost in a month.

There are places I only go once a year or so, and I could tell they were darker than the last time I visited, but it took a whole year to notice. I didn’t notice day to day changes so everything was okay.

Then I started noticing the places I visit every month were darker, too. But I still didn’t notice day to day changes so it’s still all good.

Then the grocery store I shop at every weekend got a little darker each time I visited. That was troubling but I still didn’t notice day to day changes so nothing felt too urgent.

Finally my eyesight got to the point that the kitchen and bedroom look darker every day than the day before. The loss of my eyesight is accelerating, and the rate of acceleration seems to be increasing. But I’ve still got a good life so I told myself everything’s okay.

But trying to find the patches of grass I’d missed with the lawn mower today kind of broke something inside of me. How the hell did I lose so much eyesight in 30 days? Even though I notice it getting worse every single day now, how could just 30 days of gradual loss make a hole that freakin’ deep?

I usually don’t like mowing the grass much. It’s sweaty and humid outside and we’ve got way more yard than we need. But I enjoyed mowing it today. I realized it’s the end of summer and probably won’t need it again until next spring, and by next spring I won’t be doing it anymore. It kind of felt like the last day at a job, or maybe the last day of school, with nostalgia and wistfulness and a sense of pride for a job well done. I can’t even remember the last time I drove a car because I had no idea it would be the last time I’d be able to drive a car. I wish I could have felt the same sense of nostalgia and wistfulness and pride for driving, but that ship has sailed. It feels like an opportunity lost.

To my little black Murray lawnmower with the Briggs and Stratton engine, thank you. Thanks for starting on the first pull today. Thanks for getting through the entire front lawn on one tank of gas. Thanks for years of service. Thanks for the exercise you gave me. Thanks for keeping the HOA Karens out of my life. Sorry I ran you into the pole.

Most of all, thanks for keeping me company today. This is goodbye, buddy. You’ve been a good little mower. We did good together. We made a good team.

There. Is it cringe? I think so, at least partially. Poorly edited, too, but like I said, the magic happens when emotions flow through my fingers and into the keyboard, and I’m not about to second guess the magic. It stays how it is. And I'm proud of it. It came from my heart. It captured the emotions I felt that day. I’m not trying to be the next Walt Whitman or Sylvia Plath, I just want to tell the truth. My emotions that day were cringe and I'm not proud of them but my storytelling that day painted them honestly. I'm not proud of how I felt but I'm proud of how I captured those feelings in writing.

One last detail before I introduce you to Rumster. My laptop computer is zoomed in to 225% and I often use CRTL+ to zoom in on certain web pages even more. Reddit is laid out in sections. At 225% some of the sections don’t fit on the screen. Each time the private chat window is opened every new chat invitation automatically goes to the top of the queue, but my laptop was zoomed in so much the top of the queue was cut off. I received an invitation to chat but couldn’t see who it was from.

I accepted. And that’s how I met Rumster.

He wrote -

I know this doesn't mean much.  But your post was an extremely heartfelt post.

Not knowing who I was chatting with I replied -

It means a lot, actually. I had no idea where it would go when I started writing it. Kind of a stream on consciousness exercise. The more I wrote the more the anger fell away and the gratitude emerged.

I'm very new at this. It's only been a month since I was legally declared blind. There's so much I still have to learn

And then he dropped the bombshell -

I created this sub for a reason. You are one of them.  Please,  ask any question on here.  We have all kinds of people here and it will surprise you how many relate.

He created this sub? I zoomed out to see the name of the stranger I was talking to. u/Rumster. I checked r/Blind mod list, which I could see now that I was zoomed out. u/Rumster was listed as the creator.

I thanked him for making me feel welcome and he said -

You have no idea how much this means to me.

The guy who created a subreddit with 15,000 members and guided it since 2008 was saying how much my appreciation meant to him? I felt I didn’t deserve his notice, much less his appreciation. I was an outsider still cringing proudly about what I’d just written, only a month into legal blindness, a total noob with no clue what to do. Just knowing he’d created r/Blind made him seem like blind internet royalty to me. Yet he sought me out — me, out of the 15,000 other members of r/Blind, and made me feel welcome.

We chatted off and on for a few months. He kept complimenting my latest writing and I kept complimenting his dedication to r/Blind. We became each other’s fan club. We became each other’s friend.

He asked me to do more so I became a moderator of r/Blind. Then he asked me to do even more. He wanted me to write a weekly blog.

A few weeks ago I wrote a comment on another post on r/Blind. It didn’t get many views — comments generally don’t get read as often as the original posts. But it caught the attention of a Redditor who goes by u/CosmicBunny97, who also said I should write a blog.

I answered -

Yeah, u/rumster has been saying the same thing. He wants to create some sort of space for me to blab. But I’m not sure.

I realize I can give voice to a community that isn’t well represented. Rumster told me he considers me more of an ambassador than a traditional moderator. I like that.

But writing on a deadline is a whole different ballgame than writing from the heart. I’m not sure I could be as honest and as open if I were speaking for more than just myself.

There’s no such thing as writer’s block when I’m my own target audience. I just let my mind wander and write it all down as it comes to me. The discipline required to stick to a topic shuts off the part of my mind that wants to wander and explore and asks questions, and that’s the only part worth reading.

That’s why blogging and unpublished, private short stories work for me. That’s why I’m afraid to commit to something more structured. I don’t want to let the community or Rumster down.

The moment I start thinking of other people reading what I write I get stage fright. If you look at my Reddit history you’ll see tens of thousands of comments I’ve made to other people’s questions but just a handful of original posts. I love to answer questions but I don’t feel comfortable starting the threads.

Still, one of my guiding principles is to make important decisions based on love, not fear. I’m clearly afraid of doing this, and no decision made in fear ever turns out as good as the decisions based on love.

So I haven’t said no. I’ve kept the door open. But I haven’t said yes because I don’t think I can bring my A game if there’s an audience.

I will consider your words when I talk to Rumster. Thank you.

Today I talked with Rumster. Not about this, though. It was more of him praising my Reddit posts. Come to think of it, maybe it was about this and he was just being more subtle than I realized.

I don’t know if this will take off. I have no idea if my story interests anyone else. I know I can write. I minored in English in college. I know I can write better than 95% of social media, but that's a pretty low bar. I know I can articulate the hard parts of going blind. I’m not looking for encouragement. This isn’t me begging for praise. I have a fairly good grasp of my strengths as a writer and weaknesses as an editor. I’m up to the task of writing.

But I don’t know if I can write honestly about blindness as a concept. I’m still the outsider, the noob in a community where many people have spent their entire lives. I can’t give voice to the blind community, I can only tell my own story and share my own experience.

If you’ve come here to learn the secret wisdom blindness confers upon a person you’ll be disappointed. I don’t have any grand truths to share, just my own story, poorly edited but written as honestly as I can tell it. And that commitment to honesty compels me to say I’m not capable of telling The Blind Experience, only my own blind experience. I look to Rumster as the authority. He looks to me as the voice. But I can’t give voice to his authority — it’s his, earned through years of work with blind people and assistive technologies. Only he can share it. If I am going to stay honest I can only tell my own story, not Rumster’s or yours or anybody else’s.

My brother is a truly gifted artist, a wizard with pencil and paper. When we were little we tried to make a comic book together. I was jealous of his superior drawing ability. Typical sibling rivalry, but for a little moment in time we collaborated. His drawings and my writing combined to make our comic book. But I couldn’t handle being second best at drawing so our collaboration didn’t last past page six.

If this doesn’t work it won’t be because of jealousy. I’m more confident than I was back then. I'm happy being second best at something I love because it means the thing I love is in more capable hands than mine. But this isn’t a comic book. This is deeply personal. As much as I want to be the blind community’s megaphone I can’t, not if I want to write from the heart. The only way to keep this honest is to make it personal. And that sucks because there are dozens of people on r/Blind whose stories are better suited to this space than my own. My own journey into darkness doesn’t measure up, but it’s the only one I know well enough to tell.

Rumster, you’ll be the first one I show this to so I’m leaving you this Easter egg in the first ever post on this blog. I love you, Brother. You welcoming me to r/Blind gave me courage to stick around and write. You making me a moderator gave me a sense of purpose. Your encouragement to start this blog got the ball rolling. You will always be royalty to me.

And get me an editor if you want this to get any better.