Coping with Vision Loss Triggers
Ed McDaniel, a psychologist with low vision, joins us to talk about common emotional triggers people with vision loss face and how to recognize and manage them.
Hadley
Coping with Vision Loss Triggers
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, we discuss vision loss and coping with triggers. Our guests are Hadley's director of community, Marc Arneson, and psychologist, Ed McDaniels. Welcome to the show, both of you.
Ed McDaniels: Thank you.
Marc Arneson: Thanks, Ricky.
Ricky Enger: So happy to have you both. And in fact, we were in a virtual room together not so long ago. We did an episode along with Jeff Flodin and we talked about vision loss and shame. So, if you haven't listened to that one, it is well worth checking out. But today, we're going to talk about something that comes up just about as often as that previous subject. We're going to be talking about triggers with vision loss and what are they? How do you navigate your way through them? What are some strategies to deal with them in a healthy way? And so, really excited to talk about all of that. Before we do that, let's just get a few quick words from both of you and introduce yourselves. So, we'll start with you, Marc.
Marc Arneson: Sure. Thanks, Ricky. My name's Marc Arneson. As Director of Community, one of the things I do here is I get to just meet interesting and fascinating people and hear their stories. And then, I also get to visit different conferences, and groups, and share all about what we're doing here at Hadley.
Ricky Enger: Very cool. I love it. If I didn't have my job, I would want yours.
Marc Arneson: Can't have it.
Ricky Enger: Well, that's all right. I'm happy with technology. So, we're both doing what we love. And Ed, how about you? Tell us a bit about yourself and what you do.
Ed McDaniels: I was a psychologist for the state of North Carolina for 30 years before I retired. Since then, I've been doing a variety of things. But, more recently, I have focused on some volunteer experiences with people with vision loss. I have recently started a vision loss support group in my area.
Ricky Enger: Wow, that's fantastic. It sounds like for a variety of reasons, you are the perfect person to come and share with us about triggers. I know that you, both as a professional and as a person with vision loss yourself certainly have some experience with this. So, why don't we then jump right into talking about these triggers? What they are? How can we deal with them? And just getting some of those strategies. So, Marc, I know you've got great questions. Let's get into it.
Marc Arneson: Great. Yeah, I'm really excited for this. Ed, thank you, again, for joining us. This is going to be a great conversation. I was thinking we just start right at the beginning and maybe Ed can help us better understand, what is a trigger?
Ed McDaniels: Well, with vision loss, of course there's stress, and sometimes pain, and even trauma associated with vision loss, particularly if you have had better sight earlier in your life and you're experiencing a change. That painful event, even though maybe you're getting to a better place, something along the way may come up that will lead to those feelings that you've had early on to re-emerge. Sometimes, to others, it may appear that what we're experiencing may be an overreaction to the event. But really, maybe they're not seeing that we have an underlying pain that we're experiencing as well.
Marc Arneson: That makes a lot of sense. So yeah, in relation to vision loss, are there common triggers for folks with vision loss? And I don't know, maybe even you personally, do you see common triggers in your own life?
Ed McDaniels: Yes. I’ve met a lot of people with vision loss, and I hear some common things that people will say that trigger them. Sometimes it's when other people around them don't understand what they're experiencing. Sometimes it may be something as simple as frustration with technology, trying to access things that are difficult to access due to vision loss if you're in a crowded place. For me, one of the common things that I've had over the years, and I think I've gotten better at dealing with it, but of course it still happens as a person was vision loss. I have retinitis pigmentosa, so I still have some central vision. But I do from time-to-time trip on things, or bump into things, or hit my head on things. So that's something that is a reminder to me about my vision loss and some of those feelings I had when I was first diagnosed with RP re-emerge. And I think more about them. And have those feelings to re-emerge.
Marc Arneson: Thanks for sharing that, Ed. I appreciate, even from a personal perspective, some of the things that can set off a trigger. One of the things I've heard from different folks, I don't know if you can speak to this or if this is your experience, but I've heard how sometimes it can be frustrating when you feel like you finally figured that thing out that's been so difficult for you. You've got it down now. And then, for whatever reason, when you try to do it the next time, it's just difficult. Is that something that you've experienced? Or have you heard that from other folks as well?
Ed McDaniels: Yeah, and I think the feeling associated with that is maybe disappointment, where you thought that you had figured things out or gotten past something, and then when it does happen, you have that sense of disappointment, because you thought you had it handled and you didn't. So, yeah, it's very frustrating when that happens.
Marc Arneson: Yeah, makes sense. The other thing, I don't know if you can speak to this too, is I understand that sometimes events related to vision loss can be a trigger for some folks. Are you able to talk a little bit more about that?
Ed McDaniels: Yeah. As I was saying earlier, some of the types of events that happened are just environmental things. I can give maybe another example of one that happened to me recently. The town where I live, they don't have audio description with our cable service. I followed up with their customer service, excited that I might be able to have some impact on that and see if that might be a service that they could provide since it's not currently being provided.
After several calls, and nothing happening, I noticed when I was calling, one time I was feeling more impatient, more agitated, and trying to advocate for myself and the need for services. That was an event that I hadn't really experienced much. But the customer service person didn't really seem to understand how important that was to me. After the phone call, I recognized those feelings I was having. So, the next time I called, I was better prepared to deal with that, because it's important to me, even if I'm feeling agitated or upset, I want to make sure that some of the things that are important to me, like being kind and calm around people, that I can still do those things. So, when you're triggered by an event, you want to make sure that you are still doing what's important to you in a way that you're able to interact with other people in a productive way.
Marc Arneson: I imagine that's not always easy to do, interact with people in the way that you want to.
Ed McDaniels: No, it's not. No.
Marc Arneson: And, you have these feelings. That actually leads me to my next question, Ed. I've heard you mention a couple of different feelings that can come with being triggered. You mentioned disappointment, agitation, or frustration. I wondered are there other common feelings you would imagine people are experiencing. And then, how do you stay true to yourself in those moments, being kind and respectful in the things that you want to be with people?
Ed McDaniels: Yeah, I think some of the common feelings are your sadness, anger, disappointment, sometimes shame, a whole variety of things. And, to prepare yourself, everyone needs to make sure that they know what's important to them in their lives, the things that you value. For myself, I have a list of things that are important to me, and I use that as a compass for my life. Things I'm trying to move towards. For example, fitness is one of the things that's important to me. For example, if I have a trigger related to my vision loss, if I'm out walking or running and I bump into something, I might have a feeling, "Well, this is not worth it." But I remind myself, fitness is important to me, and I need to figure out a way to address that trigger. And there are a number of things I've done over the years to make sure that I can continue to be fit, even when I'm faced with obstacles or triggers related to that.
A simple example, something that happened to me because of my narrow vision field, as I mentioned earlier, is hitting my head on things, or bumping into things. So, over the years, I've done some things to help with that. Mobility training. One of the simple things I do with the regular routes that I use, a lot of times there's branches, and branches are more difficult for people with vision loss, because if you're using a cane, you're only sensing what's on the sidewalk, even with a guide dog. For the most part, my guide dog does move me around branches. But I had a recent situation, where there was someone on the sidewalk approaching at the same time where there was a branch.
My guide dog was trying to help me navigate the branch and the person. I did hit the branch. So, one of the things I do, particularly in the springtime, with my regular rounds, is I take some clippers with me and if there are branches hanging over the sidewalk, I will go along and clip them. So that's something that I can do. That's a practical thing. There's a lot of things that we can do to address triggers in a practical way, and that's something that has helped me to not get triggered.
Marc Arneson: Yeah, that's good advice. Now that you mentioned it, I wish fitness was more important to me in my life too. So maybe that's something I need to figure out. Okay. So, we know triggers are out there, they're not pleasant always, I imagine. And there's things that you've given some practical advice on that we can manage those. But, what about preventing them? Is that possible?
Ed McDaniels: Yeah, I think so. As I mentioned, there's some practical things that you can do. If you think about triggers, it is an emotional reaction and it's real important to take care of yourself. If you're not eating well, or sleeping well, or staying active, you're more likely to be triggered by things. I know when I'm tired, I'm more likely to respond to something in an emotional way, than if I'm feeling well rested. So, definitely taking care of yourself is, I think, the number one thing. And then, as I mentioned before, recognizing what's important to you and making sure you are going in that direction, rather than letting an emotional trigger lead you in another direction.
Marc Arneson: That makes sense. For me, I think, it's hunger.
Ed McDaniels: Yeah.
Marc Arneson: I have to be careful with decisions I'm making and things that I'm doing when I'm hungry.
Ed McDaniels: Or it can be a combination where you're tired and hungry at the same time.
Marc Arneson: That's not a good combination for me. So, there are things that you can do, you can feed yourself and take care of yourself and all those things. But what if it's somebody else that's causing that trigger? Something that somebody else is doing that you don't have a lot of control over. What can you do in moments like that, Ed?
Ed McDaniels: Well, as you said, the first thing is to recognize that you don't have a lot of control over what other people do, that's important. Although, you may have some influence. And I think, depending on what the situation is and who the person is, you have to make that choice as to whether that's something you want to address with that person. If it's somebody that you don't really know and you're not around them much, it’s probably best just to let it go. But if it's someone that you live with, or you work with, then I think it's important to open up and talk to that person.
The thing you have to be careful about is sometimes when you have talked to someone about it and it happens again, that trigger might even be more pronounced the next time. So, you have to be patient, because unless someone is experiencing vision loss, it is hard for them to really understand what you're going through. Sometimes people just forget. So, I think just being patient and just recognizing sometimes it's easier to change your own behavior than other people's behaviors. But it depends on the situation, I think it's worth a try.
Marc Arneson: I imagine it comes up quite a bit with social media these days. People post what they want and that can oftentimes be a trigger for some folks.
Ed McDaniels: Yeah. And I think that one of the reasons you see that on social media is because if they're in a group of other people who, for example, have retinitis pigmentosa, those people understand. So, sometimes it’s helpful to vent to people who understand and get what you're going through. And also, support groups, I think that's another place to give you an opportunity to express what you're experiencing with people who understand.
Ricky Enger: Is there ever a point where you've done what you can and you have tried to change your behavior, or you've tried to back away from people or situations who might be triggering you, and it's still happening. You're still really struggling with this and you're just encountering these things over, and over, and over that are putting you in an unhealthy place. How do you know when it's time to look outside yourself and your own support network and get some professional help? What things can a professional do to help you address those triggers in a healthy way when you just can't manage it yourself?
Ed McDaniels: I would just again remind everyone that experiencing triggers is something that happens to everyone. It's a normal thing to happen. And it happens because we're trying to figure out ways to address the situation. So, our mind is trying to help us come up with a solution. But, as you were saying, it's something that is continuing and you're really feeling like you're stuck, that you're continuing to have these painful thoughts and feelings, that is a grieving process. And that can take time. For some people that takes longer than others and I really would encourage anyone who is experiencing vision loss and struggling to seek help. After I was first diagnosed, I went to see a counselor, and that was very helpful to me to have someone that you can open up to that's objective, someone that can help you process things.
As I was talking about before, they could help you identify what your values are and what's important to you. It's helpful to have a professional to talk you through all of those things, so that you can hopefully over time respond better. And as I said, it's a process. I know for myself, I got help early on, and that was great, particularly with the progressive vision loss for me. It's been progressing for more than 30 years. Things happen and your life changes. So, even though maybe you felt like you dealt with it a long time ago, things may happen in your life that you might feel like you need help again. And that's okay. It's helpful to recognize that things aren't always going to be the way you want them to be. When you're really struggling, it is okay to ask for help.
Ricky Enger: Yeah. That's a really good point. It can be hard for people to ask for help, right? Because like you said in the beginning of the episode, a trigger might be something where the people in your life watching you become upset about this thing. They think you're overreacting. And sometimes you can internalize that too. Like, "Well, I'm overreacting to these things and therefore I really don't need help. I just need to get over myself." But there is a point where it helps to just get those strategies and have someone talk you through it, right?
Ed McDaniels: Yeah. Definitely. And I think we just have to do our best to have some self-compassion and realize that sometimes we are hard on ourselves and think we should just get over it. But that's not something that we would tell a good friend just to get over it. So, I think we have to be kind to ourselves as well. And it's okay to ask for help and recognize that you need help. And, not just with people with vision loss, but anyone who is struggling, there is sometimes stigma associated with seeing a mental health professional. And that's unfortunate, because I think sometimes people aren't accessing the help that could help them really get through some difficult times.
Ricky Enger: Absolutely. Well, this has been really informative and so helpful. I think people just want those practical strategies for how to deal with things. And then, there's that very basic approach of being kind and compassionate with yourself that can go a long way. Ed and Marc, I want to thank you both for spending a little time with us and chatting about this.
Marc Arneson: This is great. Thanks Ricky, I really enjoyed this.
Ed McDaniels: I did too. Thank you.
Ricky Enger: Me as well. And thank you, Ed, for sharing some personal things along with the professional. And, again, always great to have you both stop by. Thank you.
Marc Arneson: Thanks, Ricky. Thanks, Ed.
Ed McDaniels: 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 podcast@hadley.edu. That's P-O-D-C-A-S-T@hadley.edu. Or leave us a message at 847-784-2870. Thanks for listening.
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Episode 38
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Episode 36
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Episode 33
In this episode, we chat with low vision optometrist Dr. Mark Wilkinson from the University of Iowa. Dr. Wilkinson answers common questions and shares his advice for getting the most out of low vision optometry appointments.
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Episode 32
Jan and Elgie Dow share how vision loss has changed their relationship and the advice they have for other couples.
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Episode 31
Join Hadley advisor Eddie Becerra as he shares about losing his sight from diabetic retinopathy, and how he gained a new perspective on life.
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Episode 30
Classically trained chef Regina Mitchell shares how vision loss shaped her life. Regina worked her way back into the kitchen and is now helping others cook with confidence, no matter their vision.
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Episode 29
In this episode we sit down with the director of Well Connected, an organization that offers free, call-in groups for adults over 60 on a wide variety of interest areas: games, music, meditation and more.
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Episode 28
Support groups can be a great way to connect with others who "get it." Listen in as as low vision support group leaders Lynndah Lahey and Judy Davis describe how their groups are run and what their members get out of them.
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Episode 27
World-renowned artist John Bramblitt describes how vision loss has shaped his painting and his life.
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Episode 26
In this episode, we chat with Dr. Tim Murray of the American Society of Retina Specialists. Dr. Murray treats eye diseases such as macular degeneration and diabetic retinopathy. He answers common questions and shares his insights into the future of treatments.
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Episode 25
In this episode, we sit down with Dr. Jullia Rosdahl, a glaucoma specialist from the Duke Eye Center, and ask her some of the many questions we’ve heard about glaucoma, its risk factors, and how to treat the disease.
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Episode 24
Hadley learning expert Jessica Smith shares her experience raising a puppy that may eventually become a guide dog. She covers what she’s learned and things to consider if you’d like to volunteer to help out a guide dog school.
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Episode 23
October 15 is White Cane Safety Day, a day to recognize this important tool that empowers people with visual impairment to travel safely and independently. It also brings attention to the general public to be mindful of visually impaired neighbors, giving them additional consideration and right-of-way when needed. We sat down with Kellee Sanchez, an orientation and mobility specialist, to talk about the history of White Cane Safety Day, and how a white cane can help those with vision loss.
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Episode 22
Be My Eyes is a free smartphone app that connects visually impaired users with sighted volunteers for help with visual tasks. We sat down with Will Butler from Be My Eyes to hear how the app started, tips for using it, and exciting new features that provide specialized assistance, including with Hadley.
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Episode 21
Tracy Simon from Eye2Eye peer support program shares her story of vision loss, how her program works, and the benefits of connecting with and supporting each other.
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Episode 20
Ophthalmologist Dr. Lori Provencher chats with us about how the coronavirus pandemic has changed doctor's visits. She shares tips for staying safe, questions to ask, and what to expect before, during and after your next office visit.
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Episode 19
Mindfulness expert Tiffany Guske returns to the podcast to share tips and insights on how to cope with life's challenges, such as vision loss or an illness, building resilience and focusing on self-compassion instead of judgment.
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Episode 18
Author of "When You Can't Believe Your Eyes," Hannah Fairbairn, chats with us about how to communicate in everyday situations when you can't rely on visual cues. Hear Hannah's own story about losing vision, her practical tips on adjusting to vision loss, and advice she has on regaining confidence in social situations.
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Episode 17
In this episode, we continue the conversation on living during the COVID-19 pandemic with a visual impairment. Listen in as we share some experiences, tips, and strategies for coping during these difficult times.
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Episode 16
The COVID-19 crisis has brought a wave of change and uncertainty to our everyday lives. Listen in as we share personal experiences, resources and some helpful tips...all from a blind or low vision perspective.
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Episode 15
Assistive technology experts Ricky Enger and Steve Kelley review BlindShell, a mobile phone built for those with visual impairment. They discuss the basic features, how it differs from a traditional smartphone, and how to decide if it's right for you.
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Episode 14
This week we sit down with Dan Roberts, author of "The First Year-Age-Related Macular Degeneration: An Essential Guide for the Newly Diagnosed" and founder of MDSupport website and support group. Hear Dan's own story about being diagnosed with macular degeneration and what prompted him to reach out to others facing similar circumstances.
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Episode 13
Listen in as we explore the basics of using hand tools with a visual impairment. Gil Johnson, a visually impaired home repair expert, shares tips on everything from measuring, to leveling to hammering.
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Episode 11
Elections are right around the corner. So we gathered a panel to talk about options for voting no matter your level of vision. Listen in as we explore everything you need to know, from registering to vote to the many ways you can cast your ballot.
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Episode 12
Ricky sits down with Android Accessibility Product Manager Brian Kemler to discuss what is available on Android phones for those with visual impairment. From adjusting font size and color, or opting to listen with TalkBack instead, the commitment to making these powerful tools more useful to a wider audience is clear.
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Episode 1
In this episode, we chat with Gil Johnson, an experienced home repair and woodworking enthusiast about things to consider when undertaking home repair with blindness or low vision.
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Episode 2
Hadley's Debbie Good sits down to continue a conversation with author and visually impaired world traveler Dr. Wendy David. Together they explore a wide variety of helpful hints covering train, plane, and cruise travel as well as practical information on traveling internationally and navigating hotels.
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Episode 3
In this episode, Ricky Enger chats with Joe Strechay, associate producer on the Apple TV+ series SEE. The show takes place in a future where, after a viral apocalypse, all humans are blind. Joe takes us behind the scenes of the show and his work to help build an inclusive set for the cast and crew, including those with low to no vision. From casting to costumes, scripting to scenery, hear how Joe helped create a science fiction world that strives to be authentic to life with vision loss.
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Episode 4
Hadley's Debbie Good sits down with travel author Dr. Wendy David in this latest episode. In part one of this two-part interview, Debbie and Wendy discuss tips for traveling with confidence as a blind or low vision person, advice on picking destinations, considerations for traveling alone and in a group, and more!
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Episode 5
Ricky Enger is joined by Hadley's Debbie Worman and mindfulness expert Tiffany Guske in this latest episode. Debbie and Tiffany talk about what mindfulness is and the specific benefits that mindfulness can offer for those living with vision loss. Tiffany then walks listeners through a short mindfulness exercise.
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Episode 6
In this episode, Ricky Enger speaks with New York Times columnist Frank Bruni, who shares the story of his sudden vision loss from NAION. Bruni speaks candidly on his adjustment to the change, maintaining a realistic attitude towards his vision loss, and the failure of medical professionals to provide resources after diagnosis.
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Episode 7
Listen in as we share practical tips on how to keep your handwriting readable. This resource-packed episode includes many useful techniques and solutions to common handwriting challenges. Hadley Learning Expert Jennifer Ottowitz chats with Sue Dalton, Certified Vision Rehabilitation Therapist.
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Episode 8
In this episode, Hadley's Steve Kelley speaks with Kendra Farrow, from the National Research and Training Center on Blindness and Low Vision, located at Mississippi State. The episode serves as a guide for those new to vision rehabilitation, including determining who is eligible for services, key differences between the medical and social services models, and how to locate services in each state.
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Episode 9
In this episode, Ricky Enger chats with Microsoft's Jeremy Curry, a Senior Program Manager with the Windows Accessibility team. New vision accessibility features are now available in Windows 10 for low vision and screen reader users.
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Episode 10
In the inaugural episode of Hadley Presents, Ricky Enger and Jonathan Mosen of Aira chat about the ways in which a visual interpreter service, such as Aira, can be used to gain valuable visual information and enhance travel and leisure activities for blind and low vision users.