Support and Connection with Vision Loss

Hadley

Support and Connection with Vision Loss

Presented by Ricky Enger

Ricky Enger: One of the most powerful feelings when facing any challenge is discovering you’re not alone. In this episode, Director Marc Arneson and Cristi Stearns from our Donahoe Center for Support join us to discuss Hadley’s Peer-to-Peer program. I’m Ricky Enger, and this is Hadley Presents.

If our conversations have helped you adjust to vision loss, please consider a year-end gift so someone else can find that same support. Visit HadleyHelps.org/Give or call 800-323-4238. 

Welcome to the show! I’m glad to have both of you here. Marc, you just keep coming back, which is great, and Cristi, glad to have you here for a second time. We have some really good discussions coming up, and we’re going to hear from a few Hadley members, too, which is always a fantastic thing. Before we get into that, Marc, Cristi, why don’t you tell us a bit about what you do here at Hadley.

Marc Arneson: Yes, thanks Ricky. It is great to be here. As you said, my name is Marc Arneson and my title here at Hadley is Director of the Donahoe Center for Support. So, a little bit of what I do is just kind of oversee some of the emotional programming that we're doing to help support our members here at Hadley.

Cristi Stearns: And my name is Cristi Sterns. I'm the clinical support specialist here at Hadley. So, I have the pleasure of talking with our amazing members every day and helping them learn more about what we do here at Hadley, as well as in the background work on the clinical programming to help support their social and emotional needs related to their adjustment to vision loss.

Ricky Enger: Great, so there’s a lot going on with the Donahoe Center for Support right now, and specifically I’m looking forward to hearing about how our Peer-to-Peer program is going. I know we’ve talked about it before, so it’s really cool to come in and get an update. Marc, Cristi, tell us what’s going on.

Marc Arneson: Lots of new things that we're doing here at Hadley. Isn't that true, Cristi?

Cristi Stearns: Yes, so true. Very exciting.

Marc Arneson: I was going to maybe start off by talking a little bit about where we got the idea and how things kind of all started with our Peer-to-Peer program, but then I'd love for you to jump in there and talk about how it's working now and some of the experiences that some of our members are having and things like that.

Cristi Stearns: Sounds great.

Marc Arneson: It feels like it was just yesterday that we kicked off this program. Bill and Greg are going to be sharing throughout the episode here, but they were one of our first matches. Turns out it was back in October of 2022 when we matched those guys. I don't know about you, but doesn't it feel like it's a relatively new program?

Cristi Stearns: It does, yeah. It seems like it's so new the more and more people are learning about it every day, but that's just so exciting that we get to connect more of our members to be just like Bill and Greg.

Marc Arneson: I remember back three years ago, four years ago, when we kind of started envisioning what this program could look like. It was really based on a lot of the conversations that we were having with many folks who were coming to us and just asking us, is there a way that you can connect me with someone who's going through something similar to me? And I don't know if you hear that a lot, Cristi, but I think on some of the calls that we get sometimes we're the first person that they may share their vision loss with. Do you get that quite a bit?

Cristi Stearns: Yes, absolutely. It's such a courageous move for a lot of our members to pick up the phone and call and share with us as the very first person that they've talked with about their vision loss. Maybe it's the first time that they've been willing to accept it themselves or also the first person that they've shared with who really understands what they're going through and is willing to listen and let them share openly. So yes, I do hear that a lot at the Center for Support.

Marc Arneson: Yeah, I was talking with one of our members, and I always remember this story because it just stood out to me how she was sharing that she lives with her husband and they're in the same home together and she has grown children who live relatively close. So, they're always coming home and visiting and now there's grandkids that are running around the house and lots of energy, lots of sounds, lots of activity. And she said she has lots of friends that she talks to too. But she shared that with all these people in her life, all the people that she has to turn to, she's never felt so alone. She’s relatively new to vision loss, and her vision was continuing to change quite often. And she just said, “I wish I had one person, at least one person that I could turn to who kind of gets it.” She's like, I think that would make all the difference.

We ended up connecting her in our Peer-to-Peer program with one of our other members. I remember I spoke with her a little bit down the road a few weeks later and she said, Marc, “This was the missing piece for me.” Which kind of speaks to what we're trying to do with our Peer-to-Peer program, the idea of introducing folks who are going through something similar with one another and having them offer support for one another as well. So it's kind of where the program started, just in response to so many folks who we get on the phone or are asking us to see if we can connect them with somebody else who's going through something similar because they just don't have that person in their lives. And so, it all came out of this Peer-to-Peer program, and we started with a handful of folks. I think we've started to really pick up some speed, and the program is growing really well now. I think we have over 850 people that are now connected in our Peer-to-Peer program, which is really exciting to see.

Cristi Stearns: Wow, that's really incredible.

Marc Arneson: Isn't it cool to see how it's grown? And I think in the last year it's grown quite a bit more than in previous years. So, I think we're really starting to roll and pick up steam in the program, and we see a lot of people that are finding support from one another. I mentioned Bill and Greg and they're one of our first peers. We've got a clip of both Bill and Greg and then one of our other members, Bob, that's going to share a little bit about their experience with the program.

Bill: I just wanted to have a relationship with someone that would understand not only the destination, but the journey and where we are now in this process without having to talk about it incessantly. I wanted someone that was a friend that had a visual impairment. I have friends, they don't have a visual impairment, and they want to give me advice that they really don't have a foundation for. They want to help me do things I can do on my own. And so that's the kind of relationship I wanted, just somebody that you could talk to and you could make casual reference to our visual preparedness without having to make it the sole topic of conversation every time. And anytime I'm around people who don't understand this, they either don't know what to say to me and say nothing or this is all they want to talk about.

Greg and I do this, reference this and the problems, but the opportunities too that it presents us with. But I don't want it to be the only thing we talk about. But I have found that it just comes very natural, that you just don't feel the need to do that. There is innate sense of understanding, and I've gotten everything I expected to get out of this, and I frankly don't know what I would do at this point. And I've been at it for a long time and I'm surprised at the difference just having the relationship like this makes to me.

Marc Arneson: I love how Bill shares about that innate sense of understanding. And I think that's what we hear from a lot of our folks is that the conversation doesn't have to be all about vision loss, but the idea that they have this vision loss in common, so there's this clear understanding of one another that I think can make all the difference. I love hearing that from Bill. Now we're going to hear from Bob about his experience with peer to peer.

Bob: What peer to peer has done is overcome the loneliness or addressed it a meaningful way because neighbors, people around here, everybody seems to be so busy, and they're wrapped up in their own lives rightfully. The commonality with our physical handicaps and the fact that we've adopted children from three different countries, we don't really fit in anywhere. And so, it's generally been an isolating environment. I find the peer to peer conversations, the relationships refreshing, they combat loneliness. I look forward to the conversations every week or two weeks and all three of the guys are articulate and we just enjoy talking to each other. So, it helps. Honestly, if I could do seven more of these, I would.

Cristi Stearns: Yeah, I really love how Bob shares about having that commonality with his peers and how it's helped him feel less isolated. I think that's just so important when adjusting to vision loss and being able to share with people who truly understand. Now let's take a listen to what Greg has to share.

Greg: I was just looking for somebody to talk to that understands the same that I'm going through because it's devastating. People can say, well, you can't imagine. You walk outside and you can't see the crosswalk. It was somebody to talk to. It's not my therapist by no means, but it was therapy for me. I like talking to people and being around people and it was a steppingstone for me to go on the journey and then now it's blossomed into something that is really good for me. I get a lot out of it and it's fulfilling. It's like, hey, I accomplished something today. I got to talk to somebody, and it makes me feel better.

Marc Arneson: That's so cool too, the way that Greg talks about this stepping stone, don't you think, Cristi?

Cristi Stearns: Yeah, definitely.

Marc Arneson: And blossoms into this great friendship. He made an interesting point here that the idea that this isn't his therapist, this is really a support for one another. It's really not a professional relationship.

Cristi Stearns: Yeah, I think it's really important to note that, and he made a great point that while it's not a professional relationship and not a discussion with his therapist, it is a supportive conversation, but more in a friendly manner, just one-on-one with his peer. They've found that common road with their vision loss and also found ways to connect with one another on things related to their lives other than vision.

Marc Arneson: So, Cristi, you spend so much time on the phone with folks. I know that you're answering a lot of calls that are coming into our 800 number, the calls that are coming into our Center for Support, and you're talking to a lot of folks and introducing them to the program. Do you mind sharing a little bit, how does that conversation go and how does someone learn about our Peer-to-Peer program?

Cristi Stearns: Sure, not a problem. So, when any of our callers call into our Center for Support, we first just have a very casual conversation with them, learning about their vision loss journey so far. Whether they're brand new to vision loss or they've been at it for a while, we want to get a good sense of how they're feeling about it and opt-in. Our members will share with us that they do feel isolated or alone or they're struggling in some sense and really looking to connect with someone who understands what they're going through particularly in this case with peer to peer on a one-on-one basis. So that comes up often as we're sharing about what we do here at Hadley, sharing about the social and emotional support programs that we've developed and just sharing with them that is an opportunity for them to connect with someone. Just to have outside support, someone who's outside of their family or their friend group who gets what they're going through, who understands that this is challenging, it's hard, and they need someone else to talk to.

Marc Arneson: That's great. So, we have a couple more clips. This is Jean and Kate, and I think they're going to share a little bit about after they connected with their peers, a little bit about what that match was like. So maybe we can hear from Jean first and then we'll listen to Kate,

Jean: The Peer to Peer, I met Octavia. Her and I are literally besties; she’s just my other half really. I'm so thankful that I got to meet her through you guys, through Peer to Peer, and I'm getting chills thinking about it, but Peer to Peer was great. I had such a beautiful person in my life and that I would never normally have if it wasn't for you guys. Now I'm going to cry. I'm just so excited that you hooked me up with her and she's like my rock. We just are so much alike, it was a perfect match.

Marc Arneson: That one I've listened to a couple of times now. Cristi I do get a little choked up when I listen. I get choked up along with Jean, this friendship that she wouldn't have had without this Peer-to-Peer program.

Cristi Stearns: Absolutely. It's just so special when we get to hear from our members when they call back to let us know that it’s gone really well. And even in that initial conversation, it's just so wonderful to hear that we've been able to pair people who just really hit it off.

Marc Arneson: I think this is another one too, Kate,

Kate: My pal and I are so blessed that you guys put us together and we have really developed quite the friendship and support system and it was just incredible. We are perfectly matched and we talk about everything from being frustrated with circumstances with our blindness, to books, to politics, to our health, to everything and anything. It's so awesome.

Cristi Stearns: She reminded me of one of the questions that we ask during our screening process. What is more important to someone in a match? Whether it's a similar eye condition, similar level of vision, similar interests or similar challenges. And oftentimes when speaking with members, they kind of have a hard time picking one, which can be difficult. And so, I often say that a great match will hit on all of these so just pick your most favorite, something that is the most important because they'll all come up.

Marc Arneson: That's a great point. I mean, to some extent they are determining what's the most important thing that I'm wanting to connect with somebody on as well.

Cristi Stearns: Exactly.

Marc Arneson: It's interesting. Like I said, we've been at this now for a little over three years. Over 850 people are now part of our Peer-to-Peer program and we’re connecting with one another. We wanted to try and get an understanding of how things were going so we sent out a survey. It's really important for us to understand if it’s working and if it's not, then what can we do to make it better. So, we sent out a survey, and we asked folks what their experience is. We kind of started with, “are you still connected?” We thought that was a nice place to start after three years, two years, a year, are you still connected with the peer that we matched you with? I was surprised, it was over 75%. I think it was maybe 77% of the folks that we connected are still in a relationship with one another, which I thought was really encouraging to me.

Cristi Stearns: Yeah, definitely. I think that it's just a portion of this program that it really hits home for people, that it just connects them in a way that really isn't out there in any other aspect.

Marc Arneson: Yeah, and we've got some more clips. The first one here is one of our members talking about how helpful this relationship was. And then we'll have Bob and Greg jump on again. First, let's just listen to one of our members talk about her experience.

Speaker 1: Things were really going downhill with my vision this summer, and I was like, what do I do? I have the online support group and all that and now I joined Peer to Peer. It amazes me how they match you up. It has been the most fantastic thing. Now I have a new friend who doesn't live in my state, but we talk to each other every week and sometimes for two hours. We laugh about the things we can't see or can't do, but then we talk about other things like hobbies and our cats. It's been a great experience. It's really helped me. It's given me ideas that I might not have thought of.

Marc Arneson: I love hearing that feedback like that. She's got this new friend that she wouldn't have had.

Cristi Stearns: Yeah, I think it's really great. She also touched on something that I don't think the other clips have touched on yet, that she's found some other ideas that she wouldn't have had, which is so important because unfortunately we don't all know it all. And so, having someone to kind of bounce ideas off is really great, whether it's related to vision loss or not. So, I loved what she had to share.

Marc Arneson: That's a great point. And then we have a couple more. Here's Bob. He's talking about his experience in the program.

Bob: We’re more like friends talking instead of people with a shared disability. And that's what interested me, that's the kind of person I am. The three that I’m currently in communication with are the same way. Varied backgrounds, but yet we're similar and we enjoy talking about life and the ups and downs of it with our eyesight problems sprinkled in, not dominating.

Marc Arneson: Reminds me a little bit of what Bill shared at the beginning. It's like it doesn't have to all center around vision loss. Sometimes it's scattered in the conversation, it's really just more of a friendship that he's formed. I mean, I think we hear that quite a bit too. And then lastly, I think we're going to hear from Greg.

Greg: It's one of the best things that I think that's happened since my vision loss. You have family that are there, but they don't understand. They try to, and I love him for it. When I got in contact with Bill, it was immediate, I mean, it was almost from the first time you talked. You're like, oh, this is going to go really well. He listened to me. I listened to him, and like he said, it's been a tremendous help. My wife noticed a change in the depression and that I look forward to our calls and our friendship just grew from there.

Marc Arneson: I know that we talk about the connections and the relationships. Cristi, do you mind sharing a little bit about what these relationships kind of typically look like?

Cristi Stearns: I think it's really hard to say that any match looks the same as another because we're all different. But I do have the opportunity to listen when a lot of our members call back to share about their initial calls. We even have some members who call and share about every call that they have with their peer, which is special too, to hear how their ongoing relationship is going. I think that the most exciting part to hear is that they've found a new friendship that they wouldn't have had. And that they've learned things that they wouldn't have learned without these connections, and they've really had the opportunity through this program to connect and ultimately thrive in their vision loss.

Marc Arneson: Do we ever recommend a place to start?

Cristi Stearns: Sure, yeah. In the beginning, we do recommend that the members speak about once a week, once every other week for about a 30, 45-minute conversation. Obviously, we don't want it to seem like a daunting task or a daunting relationship but taking the time and making the commitment to really connect with your peer, we find is really important in the beginning.

Marc Arneson: Gotcha. Yeah. I think we have a couple of more clips. I think Bill and Bob are going to talk about how often they're connecting with their peers. I think Bill's going to go first, so maybe we can listen to Bill.

Bill: It's not like a formal thing. We went from talking very structured once a week to very structured every other week to - I'll call you when I need to and want to and you call me when you need to and want to. So, maybe every three weeks or so, one of us will call and we'll chat, and we'll talk about Greg being up on the ladder in Wisconsin, putting up gutters and stuff like that. It has nothing to do with blindness anymore and that's great because we can talk to each other knowing what the other situation is without having to explain it to everybody. And so that's how it is for me right now.

Cristi Stearns: I think that's really wonderful. I love how he shares that it doesn't have to be particularly structured in one way or another. They can literally just talk to each other about life and vision loss may or may not come up as needed, but they both understand where each other is coming from and that if they do need to talk about vision loss with one another that they can. I think that's really great. Now let's take a listen to what Bob has to say.

Bob: One of them is once a week and the other two are every other week. We figured it out together. It depends on the need. I mean, originally, honestly, the initial phone calls, the first one and second one were about two hours each. Everybody's lonely and your diarrhea mouthing and you're just excited to have somebody to talk to, honestly. And it's not just me; it's the way they were as well. And so, once we got beyond that, it settled down into one-hour calls and all of them were once a week. Then they just kind of migrated to once every two weeks when there wasn't really anything to talk about. So, one of them is once a week, and he's my newest peer. Only about three weeks now we've been talking, but it's fine. We've got enough to talk about that it makes sense to talk once a week.

Marc Arneson: It's interesting to hear Bob talk about that. I thought that's pretty common. It starts off one thing, and I think Bill even alluded to it. It's like it's not regimented anymore and just becomes natural. When I need to call, when I feel like talking, I'll reach out. I think we hear that pretty commonly.

Cristi Stearns: So as we're talking about the Peer-to-Peer program and how things typically go, and the things that we also hear from our members is maybe just a bit of nervousness or hesitance about joining the Peer-to-Peer program and connecting with someone that they've never met before, someone they've never talked to before, or maybe even someone who's not even in their area. So, I'd like to listen to what Bill has to say about his thoughts on this.

Bill: Well, I would say that if you have any inclination at all about being a part of this program, that you please follow through with it. And not everything you have to say to your peer needs to be profound. It doesn't need to be earth shattering information because frankly, a lot of times one of the most welcome responses you get from someone is, oh, me too.

Marc Arneson: That’s great. So, Cristi, again, I know that you're the one talking to a lot of these folks who are getting connected with each other, and you're connecting a lot of folks to one another. If somebody was listening and they're like, well, this sounds like it would be really helpful for me, or if I want to learn a little bit more, who would they call and how they would get more information about how to join?

Cristi Stearns: I would encourage anyone who has any interest whatsoever in joining the Peer-to-Peer program, or even just getting more information about it, to call our Center for Support. We can be reached at 800-323-4238, and any of our support specialists would be more than happy to share more information and help them get connected.

Marc Arneson: Anybody that answers the phone would be happy to talk to you about our program, share a little bit about how we would connect you, maybe get to know you a little bit so we can find that right match for you. Cristi, that was great being together here today, talking a little bit about our Peer-to-Peer program.

Cristi Stearns: Yeah, it's a really, really excellent program. I think that so many of our members, as you mentioned earlier, over 800 people are taking advantage of it, and I hope to hear that number or hope to see that number continue to grow as we make solid connections and help people.

Marc Arneson: It was great spending some time talking about it today. Thanks for being part of the conversation, and thank you, Ricky, for inviting us to be able to talk about our Peer-to-Peer program with everyone today. We do have one last clip, and this is a quick one, but this is Bob sharing his final thoughts about Peer to Peer.

Bob: It's been enlightening, it's been fun. Gives me something to look forward to. I can't recommend it enough.

Ricky Enger: Thank you for listening. The generosity of listeners like you keeps this podcast and all of Hadley's resources available for everyone who needs them. Consider making a year-end gift today at HadleyHelps.org/Give or 800-323-4238. 

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.