Adjusting and Coping with Vision Loss Together

Hadley

Adjusting and Coping with Vision Loss Together

Presented by Ricky Enger

Ricky Enger: With vision loss, everyone's journey is different, but there are some common challenges and there are coping strategies that can help. In this episode, Hadley's vice president, Joan Jaeger, joins us as we discuss our new Adjusting and Coping Together series. I'm Ricky Enger, and this is Hadley Presents. Welcome to the show, Joan.

Joan Jaeger: Thanks, Ricky.

Ricky Enger: So love having you here, and I love what we are talking about today. I think it's such a worthwhile thing, and I'm not just tooting Hadley's horn. So we are talking about our adjusting and Coping Together video series. And the cool thing is that if it's show and tell, we're going to do a lot of showing and a little less telling this time, which is great because we get to hear directly from that series itself. But I think before we do that, let's just get a little context. Can we talk about what exactly this series is and why we created it?

Joan Jaeger: Right. So the series of Adjusting and Coping Together is built on two major pillars from the Hadley House. One is our member generated podcast called Insights and Soundbites, where members share a little bit about their vision loss journey and what has helped them cope and adjust. So that's one piece. The other piece is the small groups that we've been hosting at Hadley for the past couple of years now in a Zoom room. that's facilitated by one of our Center for Support specialists. It walks them through very common techniques for helping navigate through any kind of loss in your life, including in this case, vision loss.

So there's topics that are typically covered, there's emotions that are typically explored, and it tends to really help people who might have been struggling to get their feet a little bit under them after having lost some sight to really begin to feel like they have a grip on things more. So those two things came together in what we're calling our Adjusting and Coping Together video series. So at each one of the episodes, you'll hear a little bit of a member story. And then the second part is coping strategies. So that directly relates to that story that has been shared in the early part of the video, as well as generalizes it to other people's stories. Some very common things that people facing vision loss tend to struggle with and some very common techniques that are known to help people work through those things.

Ricky Enger: So it sounds like we learned quite a bit in hosting these groups where we're talking to a small group of people and maybe some commonalities emerged. Some of them we probably knew already and some of them might have been a bit of a surprise. I don't know.

Joan Jaeger: Exactly.

Ricky Enger: And so taking what we learned from those groups and having these member stories, it's kind of the ideal way to put that together and reach more people, I would think.

Joan Jaeger: Exactly. Because that, Ricky, is our challenge. The small groups are fantastic, right? And we still host those and we will continue to do so, but at 15 people at a time. And Hadley already has 200,000 members and we are on the march to a million. So we knew we had to find a way to scale that help, to help many, many more people who may be feeling a bit stuck or feeling like they need an extra hand to work through some things.

Ricky Enger: Yeah, because if you're going through this, the last thing you want is, can you put your emotional struggle on to hold for a little bit while we get you on the waiting list? Exactly.

Joan Jaeger: Exactly.

Ricky Enger: Yeah. So we went through and learned quite a bit in these groups. And I think ultimately we've got seven topics. Can you just list what those are?

Joan Jaeger: Yes. And they do kind of follow, as I was saying, the progression of sessions that we host in the small groups and also that are very commonly worked through when a counselor, therapist, social worker is helping somebody work through the emotions of a loss. And so grief and what that can look like when you're talking about vision loss, the emotional spirals, things that can just set you off and come out of left field and you're like, why did I react that way? Asking for help. We know many people find that difficult. And the flip side of that same coin is feeling like a burden because that is one of the key reasons that what we learned in the groups that people don't like to ask for help because they feel like a burden by asking. The impact on relationships so that friends and family and how that can change when one has lost some vision, isolation and loneliness.

Many, many of our members will tell us that their world became much smaller as they lost vision, as they maybe had to give up the car keys, and they started to feel very lonely. So we talk about that very specifically, very directly, and self-esteem. For many, once they've lost some vision, they start to think that their life is over. There's nothing left to them, and we explore that topic, we ask those questions, and we work through that very common feeling.

Ricky Enger: And for something like that, it feels difficult, at least in my mind, to cover all of that really quickly and concisely. And yet I think we have done a pretty nice job of you're not going to be going through this for a two hour video. It's much like Adley's other videos. It's as long as it needs to be to cover everything, but sometimes I think it is better to get a sneak peek rather than talking about how great it is. Nobody really wants to hear us talk about how great it is.

Joan Jaeger: 100% agree with you, Ricky. And before we start playing some clips, which I'm really excited that we're going to do, is to your point of any one of those topics that I just listed, you could go on for days about that. Yes. And it's a good thing to explore. So we are introducing these topics. We are exposing people to some possible ways to approach it, but we don't pretend to be the be all and end all to everything, right? We are part of this. And one of the key lines in each one of the videos is you're not in this alone, right? You don't have to face vision loss alone. Give us a call if none of this feels right and we'll help you work out something that might be better for you.

Ricky Enger: Exactly, because everyone's story is different and we have the privilege of getting that feedback and people sharing their own stories, which is wonderful.

Joan Jaeger: Exactly. So maybe we should listen to some.

Ricky Enger: Yeah, I think it's a great idea. I think we'll start with grief and loss since that is sort of a beginning part of many people's journey. And we're going to hear from a member and then we're going to hear just some of those coping strategies. So here's your sneak peek.

Anne: My name is Anne Rinard and in 2018, I was diagnosed with macular degeneration in 2021 for a year, I was going almost every other week because it was changing so much. Every time you lose some vision, it's almost like starting all over. I find the emotional adjusting and readjusting to be exhausting. And that was why I signed up for the Hadley Peer to Peer. When my mom was in the hospital with congestive heart failure, I called my peer, I called Linda, and I'm like, "I'm pointless here because I can't drive, I can't help." I was expecting her to say, "Oh, I know that's really hard." But she says, "Nope, you can't drive. Let it go. What can you do? " "Okay, you're right. What can I do? "It helped me change my attitude and it opened the door for me to say," I still have choices. I still have some control.

So that was a really big difference for me.

Narrator: So how do you cope and adjust? First off, it's important to note that grieving a loss, allowing yourself to fully feel it doesn't mean that you are going to be stuck in the doldrums. An idea to start with is to simply acknowledge to yourself that you are feeling the loss. Recognizing that this is a completely different life than you expected, that it is a loss for you rather than pretending that nothing has changed or that it doesn't matter to you, can serve a purpose. It affirms what you're going through. It may even free up some energy, energy you've spent trying to ignore how you actually feel. It's okay to say to yourself," This is hard, and I really wish it wasn't happening to me. "The very act of acknowledging this reality for many can be a bit of an emotional release.

Ricky Enger: Wow, I love that. It's really powerful and so relatable, right? We're all kind of conditioned to just get through it, ignore it, it'll go away.

Joan Jaeger: Right, stiff upper lip, it'll go away. While it's a simple thing, many of us just don't do that. So it's just giving you that permission to take that step, recognize it, acknowledge it.

Ricky Enger: Absolutely. And in fact, we've got so many comments and one of them was just a quick thing to say. I appreciated the affirmation that it's okay to feel that way for a while. So we're not going to play clips from all seven, and we do have to keep a little bit of mystery there in order to draw you in and have you experience these for yourself, but we do want to play some other clips. And I think one of the most common things we get is that it's such a struggle to ask for help. People are feeling very independent and suddenly it's a little shaky. So yeah, let's hear from a bit of Ron's story and then maybe some coping strategies for that.

Ron: My name is Ron Peterson. I went to school and studied engineering and had a successful engineering career and retired about 10 years ago. But then about five years ago, I lost my vision to glaucoma. The bottom dropped out very fast and it kind of surprised me. I wasn't really prepared for it. I guess I was in denial. It just became harder and harder. And I was really in a funk there kind of in a deep hole for a few months. Losing your vision can throw you into a bad place for lots of reasons, but one of the things I learned was how to ask for help. I'm one of those guys through the years I'm driving, I get lost with my wife and I'm going to find my way. We're going to figure this out. I'll read and ask someone. But one of the things you learn when you're blind is you need help and you have to swallow your pride a little bit.

And I learned ask for help and I learned places to go to for help.

Narrator: Another thing that can help is to think ahead. Who are the people you can trust for certain tasks? You may want to talk to them in advance, let them know you will likely call on them from time to time. That way, when the moment comes and you reach out for their help, it feels more like a plan and less like an intrusion. And if it feels a little awkward, don't be afraid to bring in some humor if that's your style. Whether it's navigating the stalls of a restroom or figuring out your makeup, laughter has a way of easing tense moments. And here's something else worth remembering. In general, people like to help. Really? Think back to a time when someone asked you for help and how good it felt to be there for them.

Joan Jaeger: So relatable.

Ricky Enger: Absolutely.

Joan Jaeger: Especially the like, I'm not going to stop and ask directions.

Ricky Enger: I laugh every time I hear that clip because we know so many people like that. And I appreciate that in the end there's kind of that reminder of, "Hey, think about when somebody asked you for help and were you all like, no, I don't want to do that."

Joan Jaeger: Exactly. And this is one resonated a lot with our members. People who are used to being the one that were doing things for other people, they were the go- tos for lots of different things and that felt even more awkward to them to ask for help. And hearing Ron's story and getting some strategies under their belt, it really helped.

Ricky Enger: And it's interesting because I think, and we may even hear that as we continue on with these clips, while they are divided into these different segments, you have grief and asking for help and isolation and such. They are separate videos or workshops, but they all sort of overlap, right?

Joan Jaeger: Absolutely. There's a ton of overlap because it's the human experience and the human experience kind of goes through different pieces of things. But yes, there's a lot of overlap there. One other thing that I remember reading in a review from this particular video was someone who had said, "I watched this clip twice and it's changed how I view asking for help now." It's helped her regain a perspective on asking for help.

Ricky Enger: I thought that was so cool. Yes. Another really common thing that we hear when we talk to people is the fact that they can feel isolated, whether it's because transportation is different and they can't get out as much, or they choose to step back a little bit. So I think it's a really a common thing that people deal with. So to talk about isolation, let's hear a bit of Angela's story and then some of those coping strategies.

Angela: My name is Angela. I worked in the family business. I always knew, working on paperwork, I'm like, "I can't see this, but I'm not going to say anything I'm suffering through." Once I got the diagnosis, I went to a huge depression that lasted a very long time. Oh my gosh, my life is over. The doctor said there's nothing that can be done. What am I going to do with my life now? I can't drive anymore. I can't even leave the house. I had it in my head that there was no way I could do anything. One day I just sat up and I can't explain it and all of a sudden I heard a voice say, "It's not your time. You have things to do. " I snapped inside my head. So, I got up and went to the computer. I typed in two help blind people.

Hadley was the very first thing that came up. My whole world started opening up. My whole entire world changed with just one search. I have met some friends, sighted friends that drive. That helps a lot. I have signed up for ADA para transport. I get out, walk, now I walk every day, and that helps. Just being in the sun helps. I've got things to do. I've got things to talk about. I've got people to talk to and places to go.

Narrator: Feeling like your vision loss has uprooted your life in ways that your friends and loved ones couldn't possibly understand. That too can be a very lonely place. If this sounds like you, you may want to try picking just one person in your life to confide in. Tell them what you're facing, what you can and can't see anymore, and how you feel about all of this. Sharing with a friend or family member, counselor, or therapist could begin to ease that sense of loneliness for you and could help you begin to reconnect the pieces of your life.

Ricky Enger: Yeah. It's really good advice. If you're stuck in that loop of feeling like, "I don't have anyone to talk to. Things are going to be this way forever and no one quite understands." Just choosing that one person can really help.

Joan Jaeger: And taking that extra step, as Angela did, even just to begin with, her one person was Google when she went and searched for some help and that was the first step that led to many more steps where she found out there were some things local to her. She absolutely found Hadley, got a pair of things. Things got in place for her, but that first step was the hardest one for her.

Ricky Enger: Yeah. And it's a really good point. You never know what's going to happen with that first step. And one thing I found interesting about this one in particular is that there are a number of comments. We get these on all seven in these series, but there are a number on this one in particular that are people just realizing they're not alone. One person's like, "Oh wow, this is exactly where I am in my life."

Joan Jaeger: Exactly. Yeah. Even just knowing that you're not alone gives you a bit more courage for many to say others are feeling the same way. There are people out there, even though I didn't know that before now, and that feels better.

Ricky Enger: And that's why I think it's helpful to hear directly from people too. It's not just some random person narrating something at you. It's a story.

Joan Jaeger: Exactly. These are real stories and real ways that people found their way through. And one of the lines at the end of that particular episode is, if none of this feels good to you or none of this feels right, any of these coping strategies just feel wrong for you personally, give us a call at Hadley. Our support center specialists can help you. We'll figure what will feel good for you so that it's not this video and that's it. We really can wrap around some extra pieces of support. And one of the things that's important to know at Hadley is you'll always talk to a person. Someone will answer that phone and will help you figure it out. We'll figure it out together.

Ricky Enger: So if you are not alone, in other words, you do have friends and family, you may feel alone, but your friends and family are in some ways a part of this adjustment. And sometimes they're a bit confused, you're a bit confused as to how to share what's going on. So that too is really, really a common thing that people talk about with my friends, with my family, my relationships. How exactly do I navigate this? So let's hear then a bit from Eugenia and her story, and again, some of those ways that you might get through it.

Eugenia: Hi, this is Eugenia DeReu. I lost my vision a few years back. I had a brain tumor and I ended up with surgery and it damaged my ocular nerves. I had separated myself from my friends a little bit. And with my family, I will say I was afraid to tell them that I was having trouble because I didn't want to let them down. I'm the one that pulls it all together. First off, it was difficult to ask people or say, "I just have to figure out the ride." And I had to accept things. A family member always says, "Oh, I'm her Uber." It's funny in the first moment you say it, but after you've said it a thousand times, it makes it on the embarrassing side. Again, they're helping me. So what can I say? I don't want to hurt somebody's feelings, so I am cautious. Even though I don't believe in their hearts, they're trying to hurt me by saying it.

I find myself swallowing it a little bit. People don't know how to react to illnesses or vision loss. They just don't. You're trying to navigate it yourself, but you're trying to help them navigate it too. It's a journey for all of us.

Narrator: As Eugenia said, she had to make herself do it. And what she learned was that others in her life were struggling to navigate this new part of their journey too. It takes time and trial and error for everyone involved to figure out what works now and what may not anymore.

Ricky Enger: I have to say it really is relatable, especially the Uber part or the we're going to make a blind joke or a low vision joke and people think they're very original and sometimes maybe not so much.

Joan Jaeger: And that really resonates with something we touched on a few minutes ago, which is the roles we have. There's a certain role you end up in your family or with your friends. And if vision loss shifts that role a bit, if only temporarily, that can be really challenging for everybody. For you, it might be a reason you pull back from a family member or friend or for them. They're wondering, what should I say? Maybe walking on eggshells or the opposite making inappropriate jokes. I think one of the things that Eugenia said, which was I think a perfect summation of it is they just don't know what to say and they're trying too and you're all figuring it out together, right? That's the reality.

Ricky Enger: Yeah. And I think once you understand that, once you know that it's not just me experiencing this, everyone is dealing with it in their own way, that can maybe open up some lines of communication that weren't there because you're thinking, "Well, I'm just carrying this all on my own," or, "They'll never understand me, so why bother?"

Joan Jaeger: Precisely. Yeah. That this is super common. This happens all the time and here's some pointers or some ways others have found that works to navigate through.

Ricky Enger: One other thing that Eugenia said that I think ties kind of nicely into the next clip that I want to share is she was the one who pulled it all together. So again, we're back to roles, right? That was her identity. And when something like this impacts your identity, it's going to impact your self-esteem as well. You're kind of wondering, who am I? So let's hear then from Kara who shares how vision loss was impacting her self-esteem, hear a bit of her story, and then some of those ways to cope and get through it.

Kara: My name is Kara Snyder. My background is in the arts and I did visual art for fun on the side, but then once I started losing vision, I realized, wait a minute, I really want to be a full-time artist. I had to go through a period of uncertainty down and dark and depressing, but it was like I was grappling to find my feet again because the markers I used in my life to define myself or define meaning often were based in a visual interpretation of the world. And I thought, "Oh my God, that's my livelihood. It's my life. It's the thing I love the most." So when that became lost to me, it really made me redefine what constitutes meaning in my life, how do I proceed in my life with this huge change. One friend in particular, it was almost like a drill sergeant, like, "You don't give up because just because you think you can't paint doesn't mean you can't paint anymore." So when I would sit in my studio, I could still feel the canvases stacked against the wall.

I could still smell the paint. I could feel my brushes. I could sense the light coming in the window, all that stuff. So I was like, "What am I waiting for? " So I just started to experiment with painting. There's part of me that really appreciates and is grateful for the ability to use my other senses in a deeper way. And so that has been a gift in and of itself. I'm not going to lie, at times I was re-questioning. I'm not saying it was a perfect, seamless bounce back into happiness. It's up and down, up and down. But because there was such deep meaning in those moments, it made me realize I redefined my sense of being in the world.

Narrator: Now, most of us aren't artists, but changes to vision have a way of also changing how we think about ourselves. It could also be that things just take a lot longer to get done now, where before we were on top of everything. Feelings of frustration can grow. Feelings of incompetence can even sit in. In short, self-esteem can suffer. Then there's the fear of how others now see us. Do they think of us differently now than they did before our vision changed? Do they see us as lesser than now or weak? Are we now defined by what we've lost? Fears like these can circle through the hearts and minds of many facing vision loss, but there are things you can do to help work through these common emotions.

One thing that tends to help is this. Whenever you can, try to focus on the strengths and abilities you still have. And there are many, even if at times it doesn't feel that way to you. Another thing others facing vision loss have found helpful is to recognize that everyone will face losses in their lifetime. Everyone. It's part of being human. So rather than assuming people in your life find you lesser than because you've lost some sight, it may help to recognize that they too are likely facing loss of some sort, whether you realize it or not. Lastly, expect that things won't always progress in a straight line. As Kara mentioned, for her, it's been an up and down battle. It wasn't a seamless bounce back, but she now feels good about her progress.

Ricky Enger: Yeah, there's really a lot to unpack there. I think the part I appreciate most is sort of get out of your own head in realizing what you're going through. It's likely that other people are carrying some heavy stuff too.

Joan Jaeger: Yeah, everyone is. That as we travel through life, every single one of us is going to face some losses, every single one. And some of them are real obvious to others and others aren't. And some people talk about their losses more frequently, more easily than others, but everyone's facing it. The other thing that I liked that Kara touched on, and that was then reframed in the coping strategies, is that there's not a right or wrong way to adjust to this new chapter in your life. The fact that it's going up and down is to be expected, right? It's not like, "Oh, I should have already learned this. I shouldn't feel this way still after X number of months or years." You're going to experience this uniquely as you and things change.

Ricky Enger: Yeah. And it's important to say that because people do feel exactly that way. Shouldn't I be over this by now or shouldn't I be further along? And it's not helpful. It goes at the speed it goes, right?

Joan Jaeger: It goes at the speed it goes. And the idea that rather than focusing on the things that are more difficult or that you're still struggling with, just give yourself some credit for having figured some things out and you do still have strengths. And it doesn't define you. It is a part of who you are. It is not you, this loss of vision.

Ricky Enger: Yeah. It's really good advice. Anything that you feel like we should have covered that we didn't?

Joan Jaeger: So how you can find this series for yourself is on our website, so hadleyhelps.org, on our app, our newly launched app. And if you haven't heard about the app or want to know how to find it, give us a call. We'll help you.

Ricky Enger: So if you'd like to learn more about our app, you can give us a call about that too. It's 800-323-4238.

Joan Jaeger: Yeah. As well as if you would like some personalized, individualized help about whether it's how to find vision rehab services near you, how to find any kind of help that might be local to you versus online help versus getting into a support group or getting a peer. Just give us a call.

Ricky Enger: And it's important to reiterate, it is all free. So if you're listening and you haven't created a Hadley account, give us a call. If you need some assistance with that, we'll have a link to the series in our show notes. You can go right to that. And what you've heard today is just a sneak preview. So there's lots more coping strategies and a bit more of the member stories in each of those as well. Plus there are, I think, three or four that we didn't actually share anything from, so lots to check out, right?

Joan Jaeger: There's lots to check out. And I really do encourage you to do that. Check them out and let us know what you think about them. We are always learning from the people that we're hoping to help. So tell us how it strikes you. Tell us how we could do better. It's important to us.

Ricky Enger: Well, Joan, I want to thank you so much for stopping by and listening to these clips. It's been fun to chat. And you might just get dragged in front of a microphone again.

Joan Jaeger: Oh, no. No, I would love to. It's a delight. And I am delighted to be able to represent this new series because I think we're going to help a lot of people with it.

Ricky Enger: Well, thanks so much for dropping by and thank you all for listening. 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 P-O-D-C-A-S-T at HadleyHelps.org or leave us a message at 847-784-2870. Thanks for listening.