Oregonian uses social media to create acceptance and understanding of prosthetic eyes

Rachel Mackenzlee Mayta, who lives in the Portland metro area, had to have one of her eyes removed before she was 2 years old. For many years after that, she wore a prosthetic eye that matched her other eye. But she eventually found an ocularist who started to create “fun eyes” for her. The eyes are made of gold leaf, feature glow in the dark heart irises, can be silver or are filled with crystals. She uses her “fun eyes” to talk openly on social media about surviving cancer and using prosthetic eyes. Mayta joins us with more on her experiences.

The following transcript was created by a computer and edited by a volunteer:

Dave Miller: From the Gert Boyle Studio at OPB, this is Think Out Loud. I’m Dave Miller. Rachel Mackenzlee Mayta had to have one of her eyes removed when she was 18 months old. For many years after that, she wore prosthetic eyes that matched her other eye. Then she found an ocularist who started to create what she calls “fun” eyes. They’re made of gold leaf or have glow in the dark heart irises or are filled with crystals. She uses these creative eyes along with her sizable social media audience to talk about cancer survivorship and to normalize the use of prosthetics. Rachel Mackenzlee Mayta, welcome to Think Out Loud.

Rachel Mackenzlee Mayta: Hello, I’m so excited to be here!

Miller: After your eye was removed (this is, I imagine, before you even have memories of that time) you started going to ocularists, people who create prosthetic eyes. Can you describe how that process works?

Mayta: So, each eye is molded to the person who’s missing an eye socket. And so you go in and the first thing they do is they take a mold of the socket, so that each one is fit specifically for you. And then they can create the prosthetic from that mold. They’re all hand painted. Everything is 100% custom on it. And the ocularist will take measurements of your eye to see where your iris and your pupil sit, and then it’s usually about a three day process to make a prosthetic. I only get fun ones for the most part, when I get new ones, now.

Miller: But how long was it, when after your eye was removed, before you had your first, would you call, “fun one”?

Mayta: My first fun one… I’ve actually only been wearing a “fun eye” for about two years now. I’ve always wanted to have a “fun eye,” but there were no ocularists around that would offer that for me. I had asked a few people, and nobody was willing to do it.

Miller: Why not?

Mayta: I think it has to do a lot with this kind of like “old school” rhetoric, where I haven’t personally had reasons presented to me from ocularists, but through the Fun Eye Fund, I receive applications for people that want to receive a “fun eye” and I specifically asked, “Have you asked your ocularist for a fun prosthetic?” And so many people have, and none of them have said that any of their ocularists were willing to do it. A lot of them even said that their ocularists stated that they would be the laughing stock of the industry, or, “it takes away from the actual craft of creating these prosthetics.” I think a lot of it just has to do with [how] growth is uncomfortable for people and moving forward is uncomfortable for people, and I think that not a lot of ocularists are willing to take that step to further their skill and further the industry on progression.

Miller: I want to hear more about even the eye you’re wearing right now, which is incredibly glittery, it’s catching all the light in the studio. Do you remember how early on, how kids in school would react to your prosthetic eye?

Mayta: I feel like I got really lucky. I grew up in a family where I knew I was loved unconditionally and that I had been told since I was a child, as long as I could remember, that I was worthy and I was great and that if somebody had a problem with it, that was their problem. That wasn’t my problem. And so, even if I did get bullied in school and things like that, there were a few times here and there, but for the most part, I just kind of had this knowledge that like something must be not okay with them because I’m pretty great.

Miller: And that came directly from the messages from your parents that you realized…

Mayta: Yeah, I had a really supportive family who always celebrated all of the things that I did and celebrated the fact that I was a cancer survivor rather than this like, “Woe is me, I have to have a prosthetic now.” I remember as a child, also having that feeling like, it wasn’t a lack of confidence, but it was, I wonder if they’re looking at my eye or if I wonder if someone can notice, if they can notice…

I wonder, and it wasn’t that I was upset that they could, it’s just… I did wonder. Which is why I think it would have been great as a child to be able to have fun prosthetics, because then from a young age, instead of it being, “Oh, I wonder if they can tell that I have a fake eye,” people would be coming up to me as a child and saying, “Your eye is awesome.” And so it’s, yeah, they noticed my eye and “it’s awesome,” instead of, “Oh, I’m a little shy about this,” you know?

Miller: Well, I mean, and you have very confidently sought out something where there’s no question about what’s going on right now. You’re what’s left and what’s right.

Mayta: Yeah.

Miller: Your right eye is your human eye that you were born with, and the left one is full of multicolored sparkles…

Mayta: Yeah, they’re all Swarovski crystals.

Miller: They’re actual crystals?

Mayta: Yeah.

Miller: What was the very first “fun eye” as you call it, that you asked an ocularist to make for you?

Mayta: I wanted one where I was still a little apprehensive about it at that time. And so I asked for a gold iris, and so…

Miller: The iris is the colored part.

Mayta: Yeah, the colored part. And so I wanted it to look like I had two eyes but one was gold. And so she used gold like, 24 karat gold leaf and also gold glitter, to do the iris. And that was my very first one, and I loved it so much that I said, “All right, let’s do all gold.” And so I’ve got one that looks almost like an Easter chocolate or something. It is just all gold foil.

Miller: What was it like the very first time that you went out in public with an eye where the purpose wasn’t to mimic your other one but to be its own work of art, that could actually draw people’s attention?

Mayta: It was honestly so freeing, because when someone has a prosthetic, no matter how good the prosthetic is, there is that little sense of “something’s different,” and that’s human nature to pick up on different flaws. And so for this it was so incredibly like… there should be another word besides just “freeing”, because it felt almost as though… a man who had had a comb-over his entire life and he had tried and spent all this time trying to hide it. And then one day he just takes the clippers and shaved it off. It’s like, “I’m here, I’m happy about it, I don’t have anything to hide.” And it also opens up the conversation where people, when I would wear a regular prosthetic, may have questions they want to ask but not feel comfortable. And so by wearing a fun prosthetic, it just alerts the people around me that I’m comfortable. And there may be people who are not comfortable talking about their prosthetic, but I’m not one of those and so feel free to ask me.

Miller: Has that been borne out, since you started wearing eyes that grabbed people’s attention on purpose? Have more people engaged with you and asked you about your eyes?

Mayta: Oh, absolutely.

Miller: What do people say?

Mayta: Honestly, it’s a lot of compliments. People are just like, “Wow, that looks so cool,” or “It’s so pretty.” I do get a lot more people that want to know, “Well, why, what happened?” But for the most part, it’s just people in support and they’re like, “I love that you took something that could be hard for somebody, and you make it your own and you celebrate it.”

Miller: How do you decide which eye to… do you use the word “wear?”

Mayta: Yeah.

Miller: How do you decide on any given day? Which one to wear?

Mayta: Honestly, I wear this Swarovski one a lot because it is my current favorite, but I kind of cycle favorites. And so, certain ones depending on my outfit, I’ll say, “This would look good.” I have one that is a holographic disco ball, and it has little mirrors in it, and that one looks better when I wear warm colors and things like that. So depending on the outfit, or my mood, it just depends, day to day. I can switch it out, but I do wear this one a lot right now.

Miller: So it seems like you did find an ocularist who said, “Yes?”

Mayta: Oh, yeah.

Miller: What’s your relationship like with them right now?

Mayta: She is incredible, like I never thought, growing up, that I would be texting my ocularist memes at 11:30 at night; we talk all the time.

Miller: Well, when you were growing up, there were no memes, right?

Mayta: Yeah.

Miller: But what was it like when you would go into their office when you were, say, eight…

Mayta: Oh, when I was a kid? It was always really nerve wracking for me. My ocularist that I used to go see often said that when I was a child, they’d have to wrap me up and swaddle me so that I wouldn’t scream.

Miller: Because of the physical pain?

Mayta: It’s less pain, it’s just… it is uncomfortable. Just as much as it’s uncomfortable for someone with two eyes to think of getting a mold, it is uncomfortable for us, too. It’s not something that the human body naturally needs to feel, you know. And so it was an uncomfortable situation for me, it felt a lot like a doctor’s office, and so even as I’m through my teens, I always felt really uncomfortable at the thought of going. And now, I mean, Christina, my ocularist, she’s also here in Portland, she’s incredible and I am at her office probably once a week just stopping by to say, “Hi,” or drop something off or see how she’s doing. So it’s totally changed the game.

Miller: What have you heard from other young people who have prosthetic eyes, from, I imagine, maybe, all over the world, since you started posting videos about your experiences on social media?

Mayta:  Well, from the start of me being on social media, one thing that I was really blown away by was the fact that there are so many people with one eye.

Miller: Did you not know that?

Mayta: I guess I didn’t. I think that I felt really alone when I was growing up. I just didn’t think there was anyone like me and with the rise of social media and differences becoming more apparent in the media, it has blown me away, how many people are out there that felt the same way [who] felt like it was just them, like they were the only ones they knew. And so they thought that they were just alone in this.

Miller: You noted that because of the really positive, healthy messaging from your parents, you were prepared as a kid to deal with bullying if it happened.

Mayta: Yes.

Miller: But the social media world, I imagine, is maybe even more terrible in terms of bullying?

Mayta: Yeah. I don’t think there’s any love that can prepare you for social media.

Miller: Yeah, I mean, have you had to deal with that?

Mayta: Oh, yeah. Yeah, I mean, honestly at this point, I just kind of stopped reading comments. I’ll kind of skim, and if one seems sort of negative, I just skip over it and I don’t read it because it’s not like they ever hurt, they still don’t hurt my feelings. I get angry and I get frustrated. The only thing that really upsets me is that I don’t want other people with one eye, that may be struggling to go and read my comments and see this girl is happy and she’s okay and she loves herself and look how awful these people are. So that’s what bothers me. It’s not for me to be honest, if someone is commenting something rude on social media, again, it’s a deeper problem. And so I just don’t want someone who may be struggling to think that that’s how people are going to think of her or him, you know?

Miller: What are you hoping to do next with your platform?

Mayta: So I’ve actually started the Fun Eye Fund, which is a fundraiser that we’ve been doing for the last six months or so to raise awareness and show how important “fun eyes” are to some people’s healing. Not everybody’s going to want to “fun eye,” but we’ve been able to raise enough money to provide “fun eyes” for, I believe, 27 people now, which is amazing. I cry all the time thinking about how great that would have been to have that support from other people I didn’t know. And  pretty much we’ve just raised money. We’re working on turning that into a full blown nonprofit. And then that way we can help with all types of things, even just people that can’t afford copays for eyes at their personal ocularists. And we can just help in any prosthetic related environment that we can. That’s our journey that we’re on right now and I’m working close hand in hand with Christina at Center for Ocular Prosthetics for that as well.

Miller: Rachel, thanks very much.

Mayta: Thank you.

Miller: Rachel Mackenzlee Mayta is a social media creator who uses her platforms, right now, to spread awareness of prosthetic eyes and the possibilities that they don’t just have to look like boring old human eyes.

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