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- [00:01]
A
One of the most powerful feelings when facing any challenge is discovering you're not alone. In this episode, director Mark Arneson and Christy 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 am so glad to have both of you here. Mark, you just keep coming back, which is great. And Christy, really glad to have you here for a second time. So we have some really good discussion coming up and we're actually going to hear from a few Hadley members too, which is always a fantastic thing. But before we get into that, Mark, Christy, why don't you tell us a little bit about what you do at Hadley.
- [01:10]
B
Yes, thanks, Ricky. It is great to be here. As you said, my name is Mark 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 the some of the emotional programming that we're doing to help support our members here at Hadley.
- [01:27]
C
And my name is Kristi Stearns. 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.
- [01:53]
A
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 that before and think it's really cool to come in and have an update on that. So Mark, Christy, tell us what's going on.
- [02:16]
B
Lots of new things that we're doing here at Hadley. Isn't that true, Christy?
- [02:19]
C
Yes, so true. Very exciting.
- [02:22]
B
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.
- [02:36]
C
Sounds great.
- [02:37]
B
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 is when we matched those guys. I don't know about you, but doesn't it feel like it's, like, a relatively new program?
- [02:54]
C
It does, yeah. It seems like it's so new. 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 Phil and Greg.
- [03:07]
B
I remember back in back, you know, 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, Christy, but I think on some of the calls that we get, sometimes we're the first person that they may share about their vision loss with. Do you get that quite a bit?
- [03:36]
C
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 being 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, you know, the first person that they've shared with who. Who really understands, you know, what they're going through and is willing to listen and let them share openly. So, yes, I do. I do hear that a lot at the center for support.
- [04:08]
B
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, they're in the same home together, and, you know, 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, you know, activity. And. And she said she has lots of friends that she talks to, too, but she shared that, you know, with all these people in her life, all the people that she has to turn to, you know, she's never felt so alone. You know, she is relatively new to vision loss, and her vision was continuing to change, you know, quite often. And she just said, if 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. And we ended up connecting her in our peer to peer program with one of our other members. And I remember I spoke with her a little bit down the road, it was a few weeks later, and she said, mark, 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 just 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 is just in response to so many folks who we get on the phone who 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 started to really pick up some speed and you know, the program is growing really well now. And I think we have a little over 800, like over 850 people that are now connected in our peer to peer program, which is really exciting to see.
- [05:41]
C
Wow, that's really incredible.
- [05:43]
B
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 for one another. I think we're going to try and listen to. I mentioned Bill and Greg and they're one of our first peers. But I think about 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.
- [06:10]
D
I just wanted to have a relationship with someone that would understand.
- [06:18]
Not only the destination, but the journey and where we are now in this process without having to talk about it incessantly. And so 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 you could talk to and you could make casual reference to our visual impairedness 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. And so I, I would like for us to. And 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 that 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.
- [07:50]
B
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 I think can make all the difference. I love hearing that from Bill. And now we're going to hear from Bob about his experience of peer to peer.
- [08:10]
E
What peer to peer has done is overcome the loneliness or addressed it anyway in a meaningful way because neighbors, people around here are, you know, everybody seems to be so busy and they're wrapped up in their own lives, rightfully so. And 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 isolating environment. So I, 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. I mean, I honestly, if I could do seven more of these, I would.
- [09:04]
C
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.
- [09:24]
F
I was just looking for somebody to talk to that understands the same that I'm going through because it's devastating. People can't say, well, you can't imagine you used to be able to. You walk outside and you can't see the crosswalk. Somebody to talk to. Not my therapist, by no means, but it was therapy for me because I like talking to people and being around people. And it was a stepping stone for me to go on the journey. And then now it's just, it's blossomed into something that is really good for me. I get, I get a lot out of it and it's very, it's fulfilling. You know, it's like, hey, I accomplished something today. I got to talk to somebody and makes me feel better.
- [10:06]
B
That's so cool too, the way that Greg talks about this stepping stone. Don't you think, Christy?
- [10:09]
C
Yeah, definitely.
- [10:11]
B
And blossoms into this, 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, you know, a professional relationship.
- [10:21]
C
Yeah, I think it's really important to note that. And he made a great point that, you know, 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. You know, just one on one with, with his peer. You know, they found that, that common road with their vision loss and also they found ways to connect with one another on things related to their lives other than vision.
- [10:50]
B
So, Christy, you spend so much time on the phone with folks. I know that you're answering a lot of, you know, 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 like how does that conversation, you know, how does someone learn about our peer to peer program?
- [11:07]
C
Sure, not a problem. So when any of our callers call into our center for support, we first, you know, just have a very casual conversation with them, just learning about their vision loss journey so far. You know, whether they're, you know, brand new to vision loss or, you know, they've, they've been at it for a while. We want to get a good sense of how they're feeling about it. And often our members will share with us that, you know, they do feel isolated or alone or they're, they're struggling in, in some sense and really looking to connect with someone who understands what they're going through and 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 that is an opportunity for them to connect with someone, just have like an outside support, someone who's outside of their family or their friend. Group who gets what they're going through, who understands that, you know, this is challenging, it's hard, and they need someone else to talk to.
- [12:25]
B
So we have a couple of, couple more clips. This is Jean and Kate, and so 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, we'll, we'll listen.
- [12:36]
G
To Kate, the peer to peer.
- [12:39]
H
I met Octavia. Her and I are like, literally bestie. She is just my other half, like, really, like, I'm so thankful that I got to meet her through you guys, through the peer to peer. And I'm just, I'm getting chills thinking about it. But peer to peer thing was great. I had such a beautiful person in my life and that I would never normally have if wasn't for you guys. Now I'm going to cry. And I'm just so excited that you guys hooked me up with her. And she's like my rock, you know, and we just so much alike. And it was a perfect match.
- [13:12]
B
That one. I've listened to that a couple of times now. Christy and I do get a little choked up when I listen. I get choked up along with Gene, you know, friendship that she wouldn't have had without this peer to peer program.
- [13:22]
C
Absolutely. It's just so special when we get to hear from our members, when they call back to let us know, you know, that it, it's gone really well. And even in that initial conversation, it's just so wonderful to hear that we've been able to, you know, peer people who just really hit it off.
- [13:38]
B
I think this is another one too. Kate.
- [13:40]
I
My, my pal and I are.
- [13:44]
So feel so blessed that we have, that you guys put us together and we have really developed quite the friendship and support system and it was just incredible. But we just, I mean, we are perfectly matched and we talk about everything from, you know, being frustrated with, you know, circumstances, you know, with our blindness to books, to politics, to our health, to, I mean, everything and anything. It's so awesome.
- [14:16]
B
That's great.
- [14:17]
C
She reminded me that of one of the things that the questions that we ask during our screening process is, you know, what is more important to someone in a match, whether it's 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 it can be difficult. And so I like to often say that, you know, a Great match will hit on all of these. And so, you know, just pick your, your most favorite, you know, something that is like the most important because they'll, they'll all come up.
- [14:56]
B
That's a great point. I mean to some extent are kind of determining, you know, what's the big, the most important thing that I'm, I'm wanting to connect with somebody on as well, so.
- [15:04]
C
Exactly, you know, it's interesting.
- [15:05]
B
So we, you know, we, like I said, we've been, we've been at this now for about a little over three years. Over 850, you know, people are now part of our peer to peer program or connecting with one another. And bit ago we wanted to try and get an understanding of how things were going and so we, we sent out a survey and, but it's really important for us to understand is it working and if it's not, then what can we do to make it better? So we sent out a survey. We asked, you know, folks, you know, kind of what their experience is. When we kind of started with, you know, are you still connected? Thought that was a nice place to start, you know, after you know, three years, two years, a year now are you still connected with the peer that we matched you with? And I was surprised it was over 75%. I think it was like maybe 77% of the folks that we connected are still in a relationship with one another, which I thought was, that was really encouraging to me.
- [15:54]
C
Yeah, definitely. I think that it's, it's just a portion of, you know, this program that it just really, you know, hits home, home for people that, you know, it just connects them in a way that they, that really isn't out there, you know, in, in any other aspect.
- [16:11]
B
Yeah, and we've got some more clips. And so the first one here is one of our members talking about how helpful this, this relationship was. And then we'll have Bob and Greg jump on again first. But let's just listen to one of our members here talk about her experience.
- [16:24]
G
Things were really going downhill with my vision this summer and I was like, what do I do? I had the online support group and all that and now I joined peer to peer and I mean it amazes me how they match you up. It has been the most fantastic thing and now I have a new friend who doesn't live in my state, but I get to talk to each other every week and sometimes for two hours. And it can be about, we laugh about the things we can't see or can't do. But Then we talk about other things like lobbies and our cats. And it's been a great experience. It's really helped me. You know, it's given me ideas that I might not have thought of.
- [17:12]
B
I love hearing that feedback like that she's got this new friend that she wouldn't have had.
- [17:17]
C
Yeah, I think it's really great. She also touched on something that I don't think the other clips have touched on yet is that she's found some other ideas that she otherwise wouldn't have had, which is so important because fortunately, we don't all know it all. And so having someone to kind of bounce ideas off of is really great, whether it's related to vision loss or not. So I loved what she had to share.
- [17:42]
B
It's a great point. And then we have a couple more. Here's Bob. He's talking about his experience in the program.
- [17:48]
E
More like friends talking instead of people with a shared disability. And that's what interested me. And that's the kind of person I am. And the three that I currently in communication with, we're 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 it reminds me a little.
- [18:15]
B
Bit of what Bill shared at the beginning. You know, it's like it doesn't have to all center around vision loss. Sometimes it's scattered in the conversation, but 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.
- [18:31]
F
It's one of the best things that I think that's happened since they, you know, my vision loss. You have family that are there, you know, but they don't understand. They try to, and I love them for it. But when I got in contact with Bill, it was immediate. I mean, it was almost the first time you talk, you're like, oh, this is going to go really well. And it's, you know, he listened to me, I listened to him. And like he said, it's. It's been a tremendous help. My wife, you know, she says without him, she goes, I noticed the change in the depression and that I look forward to our calls and our friendship just grew from there.
- [19:13]
B
You know, I know that, you know, we talk about, like, the connections and the relationships. Kristi, do you mind sharing a little bit of what these relationships kind of typically look like, or do they typically look like?
- [19:22]
C
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. And 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 the ongoing relationship is going. And I think that the most exciting part to hear is that, you know, they've, they've found a new friendship that they wouldn't have had. And they've also, you know, they've learned things that they, they wouldn't have learned without these connections. And they've really had the opportunity through this program to, to connect and ultimately, you know, thrive in, in their vision loss.
- [20:13]
B
Do we ever, like, recommend a place to start?
- [20:16]
C
Sure, yeah. In the beginning, we do recommend that the members you speak about once a week, once every other week for, you know, we recommend 30, 45 minutes conversation. Obviously we, you know, don't want it to seem like a daunting task or a daunting relationship, but, you know, taking the time and making the commitment to really connect with your peer, we find is really important in the beginning.
- [20:44]
B
Gotcha. Yeah. And do I think we have a couple of more clips. I think Bill and Bob are going to kind of talk about, like, how often they're, they're connecting with their peers. I think Bill's going to go first. Maybe we can listen to Bill.
- [20:55]
D
It's not like a formal thing. We went from talking very structuredly once a week to very structuredly 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. And 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. And so it just, 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.
- [21:33]
C
I think that's really wonderful. I love how he shares that. It doesn't have to be, you know, particularly structured in one way or another. And they can literally just talk to each other about life. And, you know, vision loss may or may not come up, you know, as needed, but they, 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.
- [22:04]
E
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 were the first one and second one were about two hours each because we were, you know, everybody's lonely and your diarrhea mouthing and you know, you just, 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 get got beyond that, it settled down into one hour calls and like, and all of them were once a week and then they just kind of migrated to once every two weeks when there wasn't really anything to talk about. And so one of them is once a week and he's my, my newest peer. Only about three weeks now. We've been talking, but it's fine. We've got enough to talk about it. It makes sense to talk once a week.
- [22:58]
B
It's interesting to hear hear Bob talk about that. I thought that's pretty common. Like, you know, it starts off one thing and I think, I think Bill even kind of alluded to it. It's like they just don't have, you know, it's not regimen anymore and it just becomes natural. And when I need to call and I feel like talking, I'll reach out. Sounds like that. I think we hear that pretty commonly.
- [23:17]
C
So as we're talking about the peer to peer program and you know how things typically go, one of the things that we also hear from our members is maybe just a bit of nervousness or hesitance about JO 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, in their area. So I'd like to listen to what Bill has to say about his thoughts on this.
- [23:48]
D
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, that's great.
- [24:15]
B
So Chrissy, again, you know, I know 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. Like if somebody was listening and they're like, wow, this sounds like it would be really helpful for me or even I want to learn a little bit more. Who would they call and like, how would they get, get more information about how to join?
- [24:32]
C
I would encourage anyone who has any interest whatsoever in joining the peer to peer program or even just, you know, getting more information about it to call our center for support and we can be reached at 800-32342.
- [24:51]
And any of our support specialists would be more than happy to share more information and help them get connected.
- [24:57]
B
Yeah, anybody that answers the phone 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. But Christy, that was great being together here today talking a little bit about our peer to peer program.
- [25:12]
C
Yeah, it's a really, really excellent program. I think that so many of our members, you know, as you mentioned earlier, like over 800 people are taking advantage of it and, and I hope to hear that number or hope to see that number, you know, continue to grow as we, you know, make solid connections and help people.
- [25:32]
B
It was great spending some time talking about it today. Thanks for, 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 that we want to do and this is a quick one, but this is Bob sharing his final thoughts about peer to peer.
- [25:48]
E
It's been enlightening. It's been fun. Gives me something to look forward to. I can't recommend it enough.
- [25:56]
A
Thanks for listening. The generosity of listeners like you keeps this podcast and all Hadley's resources available for everyone who needs them. Consider making a year end gift today@hadleyhelps.org give or 800-323-4238.
- [26:18]
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@podcastadleyhelps.org that's P O D C A S T@hadleyhelps.org or leave us a message at 847-784-2870. Thanks for listening.