Emotional Adjustment to Vision Loss: Twin Perspectives

Hadley Presents

Emotional Adjustment to Vision Loss: Twin Perspectives

Presented by Ricky Enger

Ricky Enger: Welcome to Hadley Presents. I'm your host, Ricky Enger inviting you to sit back, relax, and enjoy a conversation with the experts. In this episode, Hadley's Marc Arneson, interviews twins, Jenelle Landgraf and Joy Thomas who share their perspectives on vision loss and healing. Welcome to the show, everybody.

Jenelle Landgraf: Thanks for having us.

Joy Thomas: Yeah. Thank you.

Marc Arneson: Thanks Ricky.

Ricky Enger: Thanks for being here. Wow. Do we ever have a full house today? I know I say this every episode, but we really do have a wonderful topic today. Before we share more in depth what that is, why don't we just take a minute to get a bit of background. Marc, you're no stranger to the program. You are Director of Community at Hadley, and of course, as part of your job, you get to meet a lot of people who have interesting stories to tell. Right?

Marc Arneson: I do. Yes. It's one of the things I love most about being here at Hadley is just all the fascinating people that I get to meet.

Ricky Enger: That's awesome. You end up bringing us lots of wonderful guests, and so we're happy to have two of them here today. And would love to know a bit about both of you before we get started. We'll begin with Jenelle, tell us about yourself.

Jenelle Landgraf: Well, I'm the oldest by four whole minutes and I live in a small mountain town in the Northwest with my family. I have two children. I am a clinical social worker, so I have a small private practice called Peaks and Valleys Healing, where I work with clients who are experiencing grief, loss, trauma, all the mental health things. And I also have a contract with Washington State Department of Services for the Blind, where I work with clients that they refer to me who are oftentimes new to vision loss. And I just love living in the Northwest and love the outdoors. And I'm really active in my community and I'm really excited to be on this podcast. So, thanks so much for inviting us.

Ricky Enger: Great. Thank you. And Joy, how about you?

Joy Thomas: Yeah. Well, I think we're reaching that point in our lives where the tables have turned and it's going to be beneficial to brag now that I'm four minutes younger, even though her whole life she's told over and over me with the four minutes older. I have two daughters and a musician husband, and we moved from the Midwest where we had always been five years ago to the west coast. So, I get to see my sister a lot more now, which I love, and I work at charter school in Orange County for grades kindergarten through 12th grade, doing intervention and social emotional supports. I also love writing in my spare time and hiking and things like that.

Ricky Enger: Fantastic. And speaking of writing, the two of you have a blog called Double Vision, and we'll have a link to that in the show notes. It's really great reading, and I'm not just saying that because you are guests of the podcast. It really does cover some awesome topics, and it does so in a way that's really authentic and I think very relatable. As we jump into today's topic, I'm really happy that we're doing this. I think a lot of people feel like as they're losing their vision and they're going through all of these changes and for loss of any kind, I guess, there's this feeling that there is a right way to do it and that it's this linear thing, if you're not following that linear path, then you are doing it wrong. Things are very bad for you. And I think it's important to dispel that myth, and that's partly what we're here to talk about today. I know Marc, you have a lot of great questions and I'm certain that Joy and Jenelle have a lot of great answers. So, why don't we dive right in.

Marc Arneson: Great. Yeah. I'd love to, Ricky. Thank you. And again, Joy and Jenelle, thank you so much for just spending some time with us here today. I have to echo Ricky's sentiments. I also love your blog. I've spent quite a bit of time on it and oftentimes, there's not a lot of talk or discussion about the emotional challenges that can come with vision loss and it's something that's so real for so many people. And so again, I appreciate both of you just spending a little time talking about it today. Maybe you can share a little about when you first started noticing your vision loss.

Jenelle Landgraf: Well, when we were about five years old, our parents noticed that we seemed unusually shy when it was dark out and that we were having in trouble seeing in the dark. So, they took us to an eye doctor and learned through a series of appointments and tests that we have retinitis pigmentosa, which is the name given to a group of degenerative eye conditions that affect the retina. Typically, the first sign of it is, night blindness, followed by loss of peripheral vision. It is degenerative, so it means that you lose vision slowly over time.

I just remember at that time hearing that there was a really weird, long word or series of words that describe what was happening with my vision, but to me, like how I saw was how I saw. So, from my perspective, there was nothing wrong with my vision, especially at that young age before I had lost more over the years. I just thought that's how all people see.

Joy Thomas: Yeah. I mean, similar, I have really vivid memories. Actually, one of my first memories is being at the eye doctor. The doctor showing me this Big Bird that I was supposed to follow along on his finger and it would go away and come back. And I just got this feeling that I was supposed to be seeing Big Bird more than I was seeing it. I just remember having that bad feeling in my stomach, like something's not right here. It was hard because it was before the age of the internet and things, so our parents had piecemeal information together. And I remember finding a cassette tape once and putting it in and listening to it.

And it was about this woman with RP who still goes to the grocery store by herself. And I remember being so upset, like why would she... They're so proud of her for going to the grocery store. That's nothing like why, and not realizing. And so, I remember coming to my mom and her saying, well, honey, that's about a 90-year-old. It is pretty remarkable she's still grocery shopping on her own. I think we were a little sensitive about it because we just didn't know, and we didn't want to be different.

Marc Arneson: It's interesting just from the different people I've met and talked to about their journey, it's oftentimes that people have very vivid memories of that first diagnosis. Do you think that that's pretty common in your experience and some of the folks that you guys have met?

Jenelle Landgraf: I would say from the clients that I work with who are newer to vision loss, I often will have someone describe to me in detail what their appointment with their ophthalmologist was like, where they were sitting, their response, the exact words the ophthalmologist used. It really does have a pretty significant impact on people because how it's described to them and the amount of empathy or compassion they receive really varies depending on the doctor's bedside manner and background. I've heard really some really interesting stories of people who have left offices just completely speechless or who were afraid to drive home afterward. But then some other stories where the ophthalmologist just gave them some great resources and they felt like more equipped. So, it is pretty interesting to hear how much that stands out in people's minds.

Marc Arneson: And you know what, and I imagine obviously with any kind of significant loss, there's going to be a time of emotional adjustment. And Ricky, you had mentioned at the beginning that sometimes people feel like there's a certain way that you need to move through this time of adjustment. And I've often heard from different people that they feel like they're just not adjusting well to this vision loss. Is there anything that you would share with somebody who's in that place or feeling that they're just not adjusting well? Is there anything you would say to someone who's feeling like that?

Joy Thomas: I would say there's so many different routes. I mean, just looking at the journey that Jenelle and I have been on, we've handled it very differently. I mean to the point where I have a guide dog and I started using a cane back in college here and there, and then, a little bit after college went through a lot of that training, learning braille before she did. And it just doesn't mean that I was doing it the right way, and I had way easier of a life. I think a lot of times people assume, oh, Joy's vision is far worse than Jenelle's. It's an assumption when you're using these mobility tools that, oh my gosh, you must have no vision left at all.

And I think some people wait till that point and other people start using those tools earlier. And it depends on, I think a lot of different aspects and what support systems you have and what you have around you when you feel ready. And I think there can be a lot of judgment and shame on people who are doing it at a different pace or maybe using a different tool or using it differently. I think we have these preconceived notions of how to do things and what's the right way to do things even when it comes to a disability and a degenerative eye condition.

Marc Arneson: And that's so interesting, Joy. Here, you guys are identical twins dealing with something relatively similar and in your own way. Jenelle, I don't know if you have anything you wanted to add.

Jenelle Landgraf: I would just add to be patient with yourself and your own personal journey. And I think sometimes, we can judge ourselves, or we can be really hard on ourselves. That's what I see the most, people who are dealing with vision loss or not. I just see how hard people are on themselves, and it's not easy being a human, right? It's not easy walking through these experiences. So just taking a moment to pause and have some self-compassion is typically really beneficial.

Marc Arneson: That's great advice. I've also heard that people, they oftentimes feel so alone. They feel like nobody can truly understand what they're going through. I don't know if that's something that you've heard from some people that you've met or maybe you've felt yourself?

Jenelle Landgraf: Definitely. I think that's why Joy and I, even though we lived in the same household, we're really close as sisters and friends, we didn't talk about RP or vision loss to even each other, except on very rare occasions. I think we didn't have a lot of the language to describe how we were feeling, and it wasn't something that you see on an after school special like drug use or parents getting divorced, or someone with a medical emergency in the family. I mean, vision loss is pretty rare in our country. Not having met anyone else with vision loss, it can be a really isolating experience. And I hear that a lot with the clients I work with, just like the friend groups that they used to have people not reaching out as much because they themselves just don't know how to respond, or maybe they have some fear or sadness around it. I think that is a very normal experience to feel isolated.

Marc Arneson: I'm curious in these moments where you're feeling alone, or you're talking to somebody who's having these kind of moments, what would you say to them?

Jenelle Landgraf: Well, as humans, we're wired for connection. So, I definitely recommend connecting whether it be with a trusted friend or family member depending on your comfort level or reaching out to a support group online or through the rehabilitation government or whatever it is in your state that you have for rehabilitation services.

I think it's really important because studies even show that individuals who are able to connect with other people who share the same disability as them have higher rates of self-efficacy, self-esteem, show higher rates of mental health, so less depression, less anxiety. It really does have an impact to be able to connect with people who share similar barriers in their life.

Marc Arneson: How about you, Joy?

Joy Thomas: So, during grad school, I won a scholarship with National Federation of the Blind, and that was my first time ever connecting with other people with vision loss. And I remember staying up until wee hours of the night in our hotel rooms, just sharing hilarious stories and things that used to like, I didn't even want to say out loud, like, oh my gosh, you had these really similar experiences. It was just so cathartic and incredibly validating to know that I wasn't alone. And just to even talk to people who were older than me, who had the same condition, who we were placed with mentors, and I was placed with this attorney, Ron, and we still connect, we still stay in touch to this day.

And I remember him turning to me at one point during one of the sessions. And he was like, "You are going to lose more vision." And I was like, "Yeah, I know. I know that." And he's like, “But it's going to be okay.” And I don't know what it was. It was something about him like being older, wiser, but like saying it's going to be okay. I just remember crying and just being nobody had ever said it so bluntly, but so reassuringly like that before. So that was kind of my first glimpse into connecting with people, with vision loss, and again, people I've kept in touch with from 20 years ago.

Marc Arneson: You know I imagine that there's sometimes where you are making a connection with somebody and maybe they make a comment or a suggestion that maybe well intended but ended up not being so helpful. Have you guys ever experienced that before?

Jenelle Landgraf: Well, something that stands out for me that I think we were told not necessarily from other blind people, but that we were told from an early age, “I don't see why you're trying to hide it. I don't see what you have to be embarrassed about.” That was meant to be encouraging, like, hey, share about your vision. And for me, I experienced that as very shaming, very invalidating of my experience of living in a world that was not made for someone who functions like I do. So, living in a world where things are not accessible and where blindness is not considered admirable necessarily, and where the unemployment rate for people who are blind and visually impaired is very high, is just invalidating of my experience and of the fact that things like ableism are real.

Discrimination and seeing people as less than because they have a body or live in a body that doesn't experience the world in the same way, is then what is perceived as normal is a real experience. And to say to someone, “Oh, what? I don't see what you have to be embarrassed about” is very invalidating of that experience and how different that experience is. I think that's why, when we've had the opportunity to connect with other people, with these shared experiences, it is so validating and normalizing like, oh my gosh, it's not just me. I don't just like, suck at this. This is really hard.

Joy Thomas: Yeah. And I would just add that. Yeah. I did have friends say, “Well, if you would just tell everyone, if you would lead with that and you would just pull your cane right out, then everybody would be comfortable, then they would know what's going on.” And I think that's true to a point when you show up somewhere with a cane, yes, people then are able to identify you and they know, okay. She's not just ignoring me, or she hasn't been drinking or she hasn't... It's none of those things that maybe people assume if you show up without a mobility device and you're tripping on things. But at the same time, there is some discomfort still that people have and can have around people with sight loss, around people with mobility devices, because they're not used to it.

They don't know, and then it's that pressure to kind of put people at ease and make them feel comfortable when you're already feeling uncomfortable. And so, I don't think it's this thing that solves everything. I think I thought when I start using a cane or start using a guide dog, I'll just feel so much more comfortable in my own skin, but sometimes it's the opposite. Sometimes I have people running out to help me cross the street when I don't need the help trying to pull me or grab onto me or different things that put me in sometimes more awkward situations. I just think it's important to recognize that it's a struggle both ways, even though there is some freedom in using devices and telling people, but it also comes with some responsibility as far as you feel like you have to educate people and things like that, too.

Marc Arneson: Joy, you mentioned assumptions that people can make sometimes. Have you ever come across people who make assumptions about your vision, what you can and can't see?

Joy Thomas: I remember even going to a doctor's appointment and then telling me that they wrote down one location and my husband dropped me off there and it was the wrong place. And so, when I came back to my primary care doctor and I said, hey, I tried to go to the specialist that you referred was the wrong one. And it was the secretary, and she looked at my cane and she looked at me and she said, “Well, no, no, we wouldn't have done that, but I can see now that you wouldn't have seen it anyway. So, that's probably why.” And just like assumed, like I remember feeling just so small and like, oh, she's looking at me.

And she assumes that I don't see at all, or that I wouldn't, even if I don't see what she wrote down that I wouldn't have had another way to figure it out or have a reader or have my magnifying glass or whatever it is that it was automatically my error because I have vision loss. And I think that when we assume things about people, either that they don't have any sight or that maybe that they do have sight. I mean, I know sometimes people will say, oh, I forget that you even have sight loss. And that's totally fine too. It's just that when we act on assumptions or when people say comments based on assumptions, it can be harmful.

Marc Arneson: Jenelle, I don't know if you had anything you wanted to add, have you ever had an experience like that where somebody made assumptions about your vision?

Jenelle Landgraf: Yeah. I think about my vision and then just about my ability. I was traveling independently with a cane at one point at an airport. And I actually, I have sight, even though I have retinitis pigmentosa, a lot of people with RP have, what's considered more like tunnel vision. But what I have is kind of like looking at a puzzle, but there's missing pieces that I actually do have side vision. And I could see there was someone following me everywhere I went. And so, I finally turned to him and said, “Is there something you need help with? Or is there something I can do for you?” And he said, “I just want to make sure that you get where you need to go.” And I was like, “Oh, well, thank you. But I actually know where I'm going.”

So, those experiences can be really disempowering when people assume that you need help, they assume that you can't see anything. Or even if I couldn't see anything, I know plenty of people that are blind that don't have any residual vision that have better mobility skills than I do, or than most people. And then I've also had experiences when people have questioned why I have a mobility device because they see me using my eyes in other ways, because I can still read print because I will glance at my phone. I had a really awkward experience when I was in grad school at University of Washington in Seattle. And I was on a lunch break with some classmates, a man started shouting at me, “She can see, she can see, she's not really blind.” Because I had my cane. And so, clearly maybe he wasn't well, but to me it felt like, oh my gosh, is this what people are really thinking? But this man's the only one who is actually yelling it at me. And so, there are those thoughts and assumptions that maybe people are thinking of those things. And I'm not saying it's horrible to have a thought like, huh, that person can actually see. But when we assume that it's something that we need to figure out or help them with, or without asking, it's really helpful when people can ask questions and get curious rather than making judgment or assumptions.

Marc Arneson: We were talking about how you guys, even in your adjustment, it's been different. I was wondering if you could ever recall moments where you've kind of thought to yourself, okay, I've finally figured this whole thing out, living with vision loss, I've got this down and then I don't know, maybe something happens or something changes. And then all those feelings, those familiar feelings of like anger, fear, loss, they come flooding back.

Jenelle Landgraf: Yeah, definitely. I mean, there was a time in my life where the subject of my vision loss was so tender for me that it was hard for me to even speak about it at all out loud without becoming emotional or just shutting down all together. And so, I've definitely noticed that I can sit with the difficult emotions more, but it doesn't stop from coming. I have had experiences, especially when I'm mentioning the experiences that I just mentioned recently, like disempowering experiences, especially if it's like a loved one or a friend where you know they don't mean anything by it, but they're still acting in ways that feel really disempowering. That can be really triggering, and I can feel all those emotions like an upsurge.

And I think there's like a mental health term for it called like a Sudden and Temporary Upsurge of Grief, STUG. And this STUG can just appear out of nowhere. And I think when it first happened, I thought, oh my gosh, I'm a failure. This is my career. This is what I do for a living. I've been working on this for how many years, and I still don't have it figured out. And then I've upon further reflection and some self-compassion recognizing, okay, you know what? This is sudden and temporary, and there's a lot of grief that just still needs to be worked out and processed. And now I know that I can reach out to Joy or a friend or a family member and find some connection and the resources. The journey feels easier and that it's more familiar and that I feel like I have more tools and resources, but it definitely, I don't by any means, feel like, oh my gosh, I have it all figured out.

Marc Arneson: How about you, Joy?

Joy Thomas: We all want to feel like we've arrived, or we've come to a place in our journey where we are past our life's challenges. And we figured it out and we can move forward bravely. That's like, there's these other moments where it just can come back, and then I feel like sometimes there's like the shame over the shame. I shouldn't be like... I'll be in a work meeting, all of a sudden, I can't find my giant mouse and I even have all the accessibility tools on, and I haven't zoomed, or I have VoiceOver on. And I still can't find what I need in the time that it's needed during a staff meeting. And I have this flush of hot shame just coming to my face. I feel my face just burning with shame, and then I feel embarrassed and almost ashamed that I would feel that way.

Because like, gosh, you know that these are just... When I put it in plain terms, like your eyes just don't work like everyone's, you need these tools. The tools aren't working right now, they're not working well enough. I can say that logically now, but when you're in those moments and people are counting on you or waiting for you and you feel like you're not the same as everyone else that can bring up feelings like, we're not good enough. I'm not competent. I'm not a competent person. I can now sense where they are exactly even to feel them where they are in my body. I feel it in my stomach and my throat. I can feel really like, oh my gosh, I've gone to therapy, and I've journaled, and I've gone this far. And I teach kids about how to recognize these hard feelings and how to handle them. And why can't I use the tools in this moment to not freeze. I have those moments where I think if I hit pause on the whole situation, like in a movie or pausing and you could just go on and figure things out, I could do it fine. But because I get into that freeze response, I can't even, like it almost makes my vision even worse, like everything's blurry and I can't even think what to do. And those are things that I still work through.

Ricky Enger: That's what I've noticed throughout this whole conversation is that while there are differences in how each of you deal with what you're going through and each of you has a different journey, there are similarities too. Because we are all human and I think it's part of the human experience to grieve and to think you've got it all figured out and then realize, oh wait, you know what? I don't. As we bring this to a close, I just want to ask one last thing from each of you and that is, if there were something that you wish you had been told, what would that thing be?

Joy Thomas: I would say find someone, preferably someone who has experienced some kind of either vision loss or disability that can relate and find that safe person to process with, that process your stories with so that you can write those brave new endings to stories. That first draft that doesn't have to be the final say of how you process that story. So, find that person who can help you safely and kindly and lovingly process that story.

Ricky Enger: How about you, Jenelle?

Jenelle Landgraf: Visit Hadley's website. [laughter]. I really do love your website. It has so many great resources. And I do think along the lines of what Joy said, like equipping yourself with as many sources as possible, just knowing that you do not have to be alone. You are not alone and your story matters and your journey matters. So really engaging in as many resources and connection as possible.

Ricky Enger: And one of those resources could be your blog, which is again, fantastic. We'll have that in the show notes, if you want to keep up with what's going on with Joy and Jenelle. Thank you both so much for sharing your story, sharing your journey. We don't talk enough about how we can make the process of grieving a normal thing. So, thank you again for sharing your stories and thank you, of course, Marc for doing such a great job interviewing.

Marc Arneson: My pleasure. Yeah. Thank you so much, Joy and Jenelle.

Joy Thomas: Thank you for having us.

Jenelle Landgraf: Thank you.

Ricky Enger: Got something to say. Share your thoughts about this episode of Hadley Presents or make suggestions for future episodes. We'd love to hear from you. Send us an email at [email protected]. That's [email protected]. Or leave us a message at 847-784-2870. Thanks for listening.