April Men In Motion | Lance Kestrel Johnson

The header is a photo of Lance with long blonde hair, beard, and mustache at work podcasting. In the shot, he is wearing eyeglasses while sitting at his desk with a professional microphone, plant, and coffee cup nearby. Lance has on a black tee which exposes a cool tattoo on his right bicep.

Men In Motion

Editor’s Note:

The featured Man In Motion you are about to meet today is a professional podcaster/video editor. The reason I’ve prefaced this editor’s note with Lance Kestrel Johnson’s profession is that his video is raw, unedited, and most importantly real. What I really like about Lance’s story is his authenticity. He shares aspects about sight loss that few of us talk about and I think we need more discussion around these topics. I’m not going to spoil it for you and encourage you to watch the video and/or read the transcript which has been edited for clarity. Enjoy! ~Steph

Contents:

Beyond Sight Magazine Cover

Beyond Sight Magazine Cover features a frontal headshot of lance smiling for the camera. The text reads: “Lance Kestrel Johnson | Seeing Through Sight Loss Authentically | Men In Motion.
Beyond Sight Magazine Cover

Men In Motion YouTube Video

Transcription

Introducing Lance

Hey everyone, my name is Lance Kestrel Johnson and I am 30 years old, I live in Brooklyn, New York and I happen to have retinitis pigmentosa.

First I’ll say thanks Bold Blind Beauty for letting me share my story. As I mentioned, I have retinitis pigmentosa or RP for short. And what that is, is a degenerative eye disease that affects peripheral vision. What that means is basically my vision is closing in from the outside in, essentially the kind of like a tunnel, some call it tunnel vision.

And another symptom is what people call night blindness. It’s basically a fancy way of saying, your eyes don’t adjust to the dark, so at nighttime, when you’re laying in bed, most people can kind of see details in their room. People with RP, it’s basically just black, and that’s considered night blindness. And, it even goes as far as to make just low light situations in general difficult. Because my eyes just don’t adapt. But, RP affects everyone differently, like most things, you know, vision loss is a spectrum. But, most people with RP, by the age of 40, are considered legally blind.

As for me, I’m 30 and I still have quite a bit of central vision. My peripheral vision has diminished enough to where I don’t drive anymore. So that’s a big one. Then like I said, low-light situations are sometimes a no-go for me. But yeah, I still have enough central vision, to where I can do what I love. And what I love to do is create.

Lance’s Professional Background

I am a podcaster and video editor here in Brooklyn, New York. And I also dabble in, music, production, and singer-songwriter type of thing, but that’s a whole other story we’ll talk about another day. But yeah, so I’m a podcaster video editor, and professionally, how I pay my bills, how I make money is through video editing. And you’re probably, and rightfully so thinking, how is this guy a video editor if he’s being featured in Bold Blind Beauty?

My answer is I still have central vision. Like I said, RP kind of affects from the outside in and I still have enough central, to kind of see my computer screen, which allows me to do my thing. And, I may not be able to do this forever, but I’m gonna ride this wave until I can’t.

On a side note, I actually wasn’t always just an editor I used to split my time 50/50. I would shoot, I was a professional videographer and photographer, and then I would also edit what I shot and that’s where I learned to edit. So yeah, that’s kind of a funny backstory.

I quit shooting because my vision just kept getting worse and worse. And to be honest, I don’t know if any of you’ve ever been on a film or video set, but they’re basically like visually impaired obstacle courses. There’s like light stands cameras on tripods in, you know, every piece of gear costs, like 1000s of dollars, you know, there’s cables and wires running everywhere, and most of them are dark. So it just got to a point where that wasn’t cutting it for me anymore and I had to make a decision. That’s when I picked video editing. I didn’t want to change careers, you know, I still like what I do.

Growing Up With A Sight-Stealing Disease

So I grew up in North Carolina, and I moved to New York City when I was 27 years old. Like I said, I’m 30 so fairly new here. Love it here. I moved here because basically, I didn’t want to drive anymore. I wanted to use the public transit system here and there’s just a ton of video production work here.

Since I’m able to use public transit, I was able to sell my car before moving. That’s when I officially decided to quit driving, which is step one it seems like in most visually impaired journeys of losing their independence. So that was a big one for me. But New York’s made that kind of easy for me, or not easy, but it’s not too bad. I like taking the subway around except for sometimes I see some pretty crazy stuff on there.

Growing up in North Carolina, I was able to basically see what was in store for me, as someone who is visually impaired by watching my mom, she was diagnosed in her 30s. I was diagnosed when I was 12 and it wasn’t because I was showing symptoms is basically because RP is genetically passed down and there’s a strong chance I would get it. And I did.

They found it because when I went to an optometrist when I was 12 years old, they were looking into my retina and kind of noticed, symptoms and signs of RP. Then I went to a specialist, they confirmed it and the rest is history. But growing up I was able to watch my mom and what’s interesting about that is, she can still see. Like, she still has some vision, she’s legally blind now. But, as a 12-year-old, I was like, well, my mom’s not like, really blind, she’s not like, actually blind. I was just pretty naive which is fair, I was 12 years old.

Grasping The Realities of Sight Loss

But like, growing up, I began to learn that there’s some heavy kind of things that come along with knowing you’re, you’re losing your vision. And even though my mom can still see there’s just like, tons of obstacles you have to overcome and a lot of that is just mental.

And there’s a lot of just like, mental health kind of aspects to it to where I have to kind of keep myself in check. You know, not let that gray cloud over my head, without me knowing that my vision is just going to get worse and worse over time, keep me down. And from doing things, I’m just being proactive and, taking each day as it comes, that was hard to do for a while.

I lived in denial for a long time, I didn’t tell anyone that I had RP, I basically tried to hide it. And I was pretty good at hiding it, to be honest with you, I was good until I couldn’t anymore. But yeah, I never told my employers, I never told my friends even like I, I just kept it to myself. Only a few select people knew and I just didn’t want people to perceive me any differently. I didn’t want to be pitied and I didn’t want it to affect me financially.

I thought if my employers knew, then, since video production is such a visual-heavy kind of field, I just didn’t want them to think that my work would suffer, or anything like that. So it was tricky.

Major Transition Leads To A Podcast

But going back a little bit, when I decided to move to New York, that was a big deal, because I was working full time, at the time. I had to quit my job and out of respect for my coworkers at the time—because I thought they were all crazy, talented, and super nice—I didn’t want to just like make them think that I was just leaving. You know, I wanted them to know, I had a good reason. So that’s the first time I was open about having RP and that was huge.

It took like a bunch of courage out of me. And it was very hard for me to do. And it’s kind of silly looking back on it that it was hard for me to talk about because now I talk about it all the time. But that was the first time I was open and it kind of opened my eyes a bit to, no pun intended there, to see how refreshing it is to be open. And that kind of triggered me to start a podcast.

I’ve been running a podcast for about a year now. It’s called The See-Through Podcast, and it’s a podcast that creates transparency on disabilities and the champions with them. I’m the host, I single-handedly produce, I interview the guests edit the episodes and I create all the content for it. It’s a busy hobby, but I love it and I wanted to create an outlet for me to express myself and express certain feelings or ideas, or thoughts that I have about being visually impaired. I wanted to share that with other people in the visually impaired community and beyond. I talk to everyone in the entire disability community, not just the visually impaired because I just like hearing about how people adapt to their situation. I find that very fascinating.

A Recipe For Acceptance

I think that visually impaired people and disabled people just are some of the most adaptable people on the planet. And the conversations I’m having on my podcast have just blown me away, and give me hope and a drive to, not slow down, keep living my life and just be myself. I’m not retinitis pigmentosa.

I’m Lance and I just happened to have retinitis pigmentosa and, my life is going to be just fine. Some days, I worry about that, and it’s a constant battle. But it’s a battle that the more and more I talk to people, the more and more, I’m open, the more and more I try to accept my situation and adapt to it, the better off I feel and operate. So, I’m sorry that that sounded like an advertisement for my podcast, but I promise you, it’s part of my story. And yeah, you may get something out of it, too.

So yeah, check it out The See-Through Podcast. I’ve talked a lot about what I do behind the computer and I think that’s cool and all, but you know, I’m more than that, too. You know, I have a dog named Ruby. She’s a basset hound coonhound mix, which isn’t a typical dog you see here in New York City. She has a very unique, very southern North Carolina vibe that I think people appreciate here. And I take her on long walks with my amazingly beautiful wife.

Lance’s Wife:

Hi, guys,

More Than Sight Loss

I definitely didn’t just say that because she’s behind the camera right now. But as I said, I recently turned 30 so fitness has kind of become a new, daily part of my routine. I like working out. I like eating well. I’m a firm believer in treating the whole body, right not just because I have RP.

I’m not just focused on, keeping my eyes healthy, I got to keep my whole body healthy as well. So I’m into, going to the gym, and eating right. Just because your eyes don’t work doesn’t mean that the rest of your body doesn’t work. It’s kind of like what I like to tell myself.

I also recently joined a young professionals group of New York City for the Foundation Fighting Blindness, which I hope to get more involved in, once this pandemic’s over, I’m pretty stoked on that. But yeah, I think that covers, most of who I am and what I’m about at this day, in time.

I just want people to know that I’m, I still consider myself new to this whole community. And I still consider myself like a rookie, when it comes to the visually impaired community. I’m looking to everyone out there to learn from and grow from and be inspired from. And yeah, I just, I know, I’m gonna have positive days. And I know, I’m going to have negative days.

Independence Is The Goal

So while I’m working on the mental health side of things, in terms of just accepting being visually impaired, I also want to say that my goal is to be as independent as possible. That’s why I moved to New York it’s why I take public transit.

I’m happily married now but I don’t want to depend on my wife for everything. I recently bought my first white cane, and I plan to get some, O & M (orientation and mobility) training set up here soon so I can begin that part of the journey. So I’m all ears for anyone with any tips or anything like that.

I just want to say thank you to Bold Blind Beauty for letting me come on this blog, and letting me share my story. I hope I covered everything. I’m good at editing video, I’m good at shooting it, but maybe I’m not the best on-camera talent. I’ll let you guys be the judge of that.

But yeah, thanks so much Bold Blind Beauty and if you want to reach out to me online, I’m on Instagram, my personal handle is @LanceKestrel @L-A-N-C-E-K-E-S-T-R-E-L. And my Instagram account for the podcast is @SeeThroughPod S-E-E-T-H-R-O-U-G-H-P-O-D. Feel free to DM me, I definitely will respond, or you can email me at theseethroughpodcast@gmail.com.

And I’ll close this video by saying something that I say on my podcast, and I just want to say thanks for letting me be transparent and much love.

Transcribed by https://otter.ai

Image Descriptions

  • The header is a photo of Lance with long blonde hair, beard, and mustache at work podcasting. In the shot, he is wearing eyeglasses while sitting at his desk with a professional microphone, plant, and coffee cup nearby. Lance has on a black tee which exposes a cool tattoo on his right bicep.
  • Beyond Sight Magazine Cover features a frontal headshot of lance smiling for the camera. The text reads: “Lance Kestrel Johnson | Seeing Through Sight Loss Authentically | Men In Motion.
  • YouTube video thumbnail image contains the same photo of as in the header.

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