Vision Loss and Marriage

Hadley

Vision Loss and Marriage

Presented by Ricky Enger

Ricky Enger: In every partnership, facing challenges together requires empathy and a lot of open communication. In this episode, Hadley’s Marc Arneson is joined by Dr. Ann Wagner and Eric Ringham to discuss vision loss and its impact on marriage. I’m Ricky Enger and this is Hadley Presents.

Marc Arneson: Ann and Eric, thank you so much for joining us on Hadley Presents today. It's great to have you both here.

Eric Ringham: Good to be here. Thank you.

Ann Wagner: We're so happy to be here.

Marc Arneson: Ann, you've been on the show before when we did an episode called Emotions, Mental Health, and Vision Loss. So thanks for coming back. For those folks that haven't had a chance to listen to that episode, do you mind just sharing a little bit about yourself?

Ann Wagner: Yes. My name is Ann Wagner. I am a board-certified clinical psychologist. I am newly retired, but still active in consulting and doing presentations on the topics of vision loss and mental health. I'm legally blind due to retinitis pigmentosa. My mom had RP, had five children and four of us inherited RP.

Marc Arneson: Thanks again for joining us again, Ann. We really appreciate it. It looks like you've brought a friend along as well this time.

Ann Wagner: Yeah.

Marc Arneson: So Eric, thanks for jumping on. It's great to meet you. Do you mind just sharing a little bit about yourself, Eric?

Eric Ringham: Sure. My name is Eric Ringham. I'm a semi-retired journalist and actor. I'm a writer and editor. I worked for about 40 years for the big newspaper here in town, the Star Tribune, and then also for Minnesota Public Radio for the last 10 years of my career. Ann and I have been married for going on 10 years now.

Marc Arneson: I'm really excited about our conversation today. It's not often that we get to hear from both sides of the marriage, the husband and the wife, about the impact that vision loss has on that relationship. But before we get there, Ann, you've mentioned this in some of the conversations we had, this concept of dilemmas. I think you call them dilemmas. Do you mind sharing what you mean when you talk about the idea of dilemmas, or perhaps how you define what a dilemma is?

Ann Wagner: Yeah, I define a dilemma as a moment where the context of the situation we're in can call for or pull us to act on different values and there's no win-win. If we act on one, there's no way to act on the others. So it's an internal dilemma where we already know in that moment or shortly after we're going to have emotions show up that tells us what we care about for the ones we couldn't act on, and we get to validate it's because we care about something, and yet we made a choice that was valued.

So I try to encourage all the people I work with to never judge our younger selves for the choices they make, because we face dilemmas almost every day where we have a choice, because we can only do one thing at a time in this one moment. The only thing we have any control over is what we choose to do in this one moment right now. There’re these dilemmas where we can only act on one value at a time. Sometimes we're lucky and there's a win-win, we can take one action, and it covers the main important values, but that isn't always the case.

Marc Arneson: Okay. So if I'm getting this right, dilemmas, they call us or pull us to act on two different values.

Ann Wagner: Yeah.

Marc Arneson: So has this come up in your marriage? Eric, Ann, has this come up in your marriage on occasion?

Ann Wagner: Well, yes. Often it is related to the blindness and sometimes it's not.

So yeah, we have a lot of dilemmas, and two main kinds. One is when Eric offers help that I haven't asked for, and the other is when he's busy and I need his help for something I can't see to do. When he's offering me help that I haven't asked for, the dilemma there for me, the different values are, if I accept the help, it would mean because I value and I know his core is all about loving me and wanting to be helpful and of service, and I would be supporting him in that if I accepted the help.

But the other pull for me is to decline the help because I also, my own core value of self-sufficiency and independence as part of my integrity to do the things that I'm able to do myself, so if I decline the help, that would be the value I'd be acting on. So there's a dilemma there. I can't really do both. And for him, I'm going to let him share.

Marc Arneson: Yeah, I'd love to hear from Eric.

Eric Ringham: Well in that example about offering help that hasn't been asked for, Ann is right. I was raised that if you see someone who looks like they could use a hand, you offer that hand. My father was a Lutheran pastor, and the ethic of doing good in the world, of helping people out, lending people a helping hand, it was theoretically part of the foundation of our household. And for me, where I come from, if you see someone needing help and you don't offer to help them, it's a kind of an insult, and it's something that I just wouldn't do naturally.

Ann Wagner: Yeah.

Eric Ringham: In the case we're probably going to wind up talking about here, if Ann should happen to say, "Oh God, I'm really thirsty," it is in my nature to jump up and go get her a glass of water.

Marc Arneson: Sure.

Ann Wagner: So the value there for you is being of service, being kind, loving me. Those would be the values internal for you.

Eric Ringham: I have come to understand that Ann would really rather get her own water or exercise her option of asking me to get her a glass of water, but she would rather not have me go get her one without being asked.

Marc Arneson: Gotcha.

Eric Ringham: And I am not capable of not giving her a glass of water under my own power if I see that she would benefit from having that glass of water.

Ann Wagner: I just think it might help listeners to understand. So we understand the one value, that's showing up for you, being of help, and all the nuances of just that, of being of help to somebody you care about is a view of, if I don't, I am potentially doing something offensive. But it's core to who you are. But the other value, if you don't offer the help until you wait for me to ask you, that value would be... What would you call the value if you withheld-

Eric Ringham: That value is called help by not helping.

Ann Wagner: Yes. So that's the name we came up with when he's truly helping me by not helping.

Eric Ringham: Right. But even just your personal preferences, it doesn't necessarily have anything to do with you being blind. You might be perfectly well-sighted or able to see better than me and still want me to not be always in your face with glasses of water.

Ann Wagner: Sure. Sure. And in our early dating, there was a time where I was sitting on the couch and I just happened to speak the truth, "I'm thirsty" and I was about to get up to get myself a glass of water, and he jumped up immediately. So then that became a perfect word for, "If you say you're thirsty." So this is when he has already offered help that I didn't ask for. We can both use that word, "If you say you're thirsty," And I get to validate immediately, "This is who he is. He is built to be loving, and I'm not judging that he offered help I didn't ask for." Then he will respond with help by not helping, and he understands that he's supporting my value of self-sufficiency and independence.

Eric Ringham: But there is kind of a bottom line beyond which I won't willingly go. If you have a cut, I'm going for the first aid kit. And if I see that you're thirsty, I'm going to get you a glass of water. The label that we've come up with is, "If you say you're thirsty, I'm going to get you a glass of water." But there is this other whole universe of things that's covered by helping by not helping.

Marc Arneson: Help me understand that a whole universe of things.

Eric Ringham: Well, that's just the basic rule. If I'm restraining my impulse to help, that is helping, that is actively helping, and it's something that I have to work on every day.

Ann Wagner: He shared with me that each choice we make, we're going to have emotions about the choice we didn't make. Those emotions are also important to validate and understand. Like he says, it takes energy for him to decide to take the choice to not offer the help when he thinks he could be of service. And he'll often say, "Just so you know, I'm helping by not helping."

Eric Ringham: But it's the thought that counts, right?

Ann Wagner: What I assure him is, it allows me to validate his core in that moment because he is the love of my life, he is my partner, and I know that it's hard for him to support me in this way, and yet I get to see that he is. It's not about taking credit, it's just about me being able to validate something he's experiencing internally that is hard. That's the whole point of belongingness and connectedness, and just deepening our connection and understanding of each other. So those are two names, "If you say you're thirsty," and "Help by not helping."

Marc Arneson: Just listening to you guys share about this, it sounds like you've spent a lot of time talking about it and figuring it out. I'm curious about that, you guys have taken the time and the effort to pay attention to this and come up with a solution for this. Can you tell me a little bit about how that conversation started, and maybe how it evolved a little bit?

Ann Wagner: It started with me sharing with Eric when we were dating this idea of externalizing, naming the patterns, and that the more we can understand the values at play, those inner pushes and pulls, and then the core values of what it is we're wanting to show up that matters to us. Once you understand the values, it's so much easier to just validate that. So it started with me sharing the principle. When I've presented at other vision loss conferences, people will come up afterwards and say they love the idea of being able to talk with their partner, or significant other, or even coworkers for common dilemmas that show up, and the idea of having fun with the naming because we like to laugh, and humor helps us a lot in navigating these-

Marc Arneson: Okay, so there was another dilemma that you guys talked about, when he's busy.

Ann Wagner: When Eric's busy, he's in the middle of something and I may or may not know that he is actually in the middle of something really important because I just don't always know. And I need him to help with something, or my computer, so I'll ask him. The dilemma there is, for me and the values, I either ask him for help or I don't. If I ask him for help, it means I'm valuing the task I'm trying to get completed, and it's important to me. So that's one value. Or if I don't ask him, say I actually know he's busy, then I'm certainly honoring the value of that. I love him, and I totally believe that his wants and needs for his day are just as important as mine. Just because I'm blind does not give me priority in any way. So I would be supporting him to not bother him when he's busy. And then for him, the one who's busy at the time, I ask, the two options are-

Eric Ringham: To help.

Ann Wagner: Or to ask me to wait.

Eric Ringham: Or to ask you to... Yeah.

Ann Wagner: Just wait.

Ann Wagner: There's a cute story. So there's this day many years ago where we were having some leftover pie, and we were sitting there, and I finished my pie. I thought he was done with his because I couldn't see, and I asked him to look something up on his iPad, which was there. He had a mouthful of pie and he's like, "Can I eat my pie?" It cracked us up. I was laughing so hard. I'm like, "I didn't know you weren't done with your pie." Then we just realized, that's a perfect name for when he's busy with something and I've asked him to do something. We use it at least once a week, "Can I eat my pie?," he'll say, and I know he's busy and I totally validate like, "Yeah, I can wait."

Marc Arneson: I love that, "Can I eat my pie?" And you guys both immediately know then, this is the dilemma that you're dealing with.

Ann Wagner: Yep. There's another name that... I think it happened when we were in a grocery store. Do you want to tell?

Eric Ringham: Target. Yeah. Ann has many superpowers, but one of them is that she's more spatially aware, more geographically aware of her position relative to other objects, and she learns the layout. Say, for example, the grocery section in our Target. So when we're going through a Target store and we're looking for stuff, she'll give me the next three things and she'll say, "No, we've got to go get X now." So we'll be heading in that direction and then she'll remember something else that's in that neighborhood and she'll name that one.

So I've got two items in my head that I'm trying to keep straight that we're looking for, and I'm navigating the other things like I'm leading Ann through the grocery store, and I'm pushing a cart, and I've got this mental list that I'm trying to pursue. Ann will name two more things after the two that I've got in my head, and I get to a point where I have to say, "Hey, you're crashing my computer," because there are too many tasks piled up on top of each other and I've lost my ability to keep them straight and to do them in an orderly way.

Ann Wagner: So the name, "You're crashing my computer" doesn’t come up as frequently as the, "Can I eat my pie?," which the pie is just letting me know he's busy and I can wait. Unless it's something urgent, I can wait because his needs and wants for the day and his time matter and they matter to me. The, "You're crashing my computer" is usually when I'm saying too many things, or to do things, speaking them out loud because it helps me remember, and it just helps me know he needs space and time, and I just need to not speak them for a bit. So those are some common things that come up for us, and I know other couples or relationships may have different kinds of dilemmas. But we do find the naming helps us validate each other, stay connected, and actually enhance our sense of connection and belongingness with each other because we understand the values.

Marc Arneson: I love that. You guys both know exactly what is going on the minute you use those phrases. So I want to shift the conversation a little bit. Part of what I get to do here at Hadley is talk to folks, and I hear their stories, and I hear their challenges. I also talk to spouses of folks who are dealing with vision loss. I've heard husbands and wives share that they sometimes feel sad or grief for their spouse’s vision loss, but they can feel guilty for feeling those emotions of sadness or feeling grief for that vision loss because it hasn't happened to them. Are you guys able to talk a little bit about that, Eric, or are you able to share a little bit about that at all?

Eric Ringham: My father went blind late in his life. He had a severe case of macular degeneration. He was really burdened by his blindness and it really got in the way of things that he wanted to do. I think I came out of that relationship with a sense of guilt that he's going through this and, try as I might, I can't really relate to it. The thing about that was that it made me feel like there's really not... I can't really do enough for him. I was always offering to do things for him that were off the mark. I'd call him up and I'd say, "Hey dad, I've got some free time this afternoon. You want to go have lunch?," and he'd say, "No." It would be him avoiding it because it was easier for him to just stay home alone and do his own private things.

So I felt something like guilt at my ineptitude with him. With Ann, I think grief is the better word. I do feel grief on a couple of levels with her because it's hard to watch someone you love going through this progressive vision loss. Ann had precious little vision when I met her, but she's lost most of that I'd wager in the years since then. And to see the things that she can't any longer see or appreciate are hard for me.

I keep trying to deny the reality of it. This happened just a couple of weeks ago. We had one of those extraordinary full moons. We were driving and the moon was hanging over the end of the road like a blimp, it was just huge and completely full to bursting, brightly lit up and this kind of delightful orange tint to it as it hung there over the horizon. Once again, I tried to get her to see it. I'd say, "No, no, just look. It's just straight ahead. It's about 11:00 at our position just above the level of the road." Do you remember that, Ann?

Ann Wagner: I do.

Eric Ringham: And you said, "I can see a light."

Ann Wagner: But I couldn't appreciate any of the orange, and I couldn't make out the circle of it, but I didn't know if I was looking at a bright streetlamp or the actual moon, but I saw a light. There's been other times I haven't been able to find it at all with my scanning. Because I have such severe tunnel vision, I just can't find it and I get a headache.

Eric Ringham: So I think I have a thing in my personality, probably going back to my childhood, that I need to validate that I've seen something incredibly cool by having someone else see that incredibly cool thing. And if they don't stamp my souvenir card that way, I feel like I can't really prove that I saw it.

Ann Wagner: From my psychodynamic background, I would just want to say what that's actually about, or my understanding of what that's about. Because we are born as social creatures, it is incredibly important to us to feel understood. It's why we share stories. We are meaning makers, and it's all through the stories of our lives and wanting to feel like somebody else has heard that story or even shared in it. It deepens our belongingness and our connectedness, and that is healthy, and it's something we actually need for optimal health and well-being.

So it's not necessarily that you're wanting your card stamped. I think it's just that it's part of, when you see something really cool you want somebody else to experience so you can feel that shared meaning. It's about belongingness and that is an area of grief for you that I cannot see what you see, the helplessness that shows up is telling you that truth. There's nothing you can do to have me see it. What are the values? What does the grief tell you about what you care about?

Eric Ringham: Well, it tells me that I love you and I want you to experience the same world that I experience in all its beauty.

Ann Wagner: Those are ideas, and we get attached to ideas, and grief is about acknowledging some ideas are not possible and we have to detach, and that's grief. But if we get to the value level, you said it, you stand for loving me. So when you connect to that level, there are many, many other ways you can show that love through describing, through-

Eric Ringham: Right. And I like to think that I'm capable, that I have the verbal skills to help and appreciate things that she can't see. I can never learn to just keep it to myself. If an eagle flies over, and it happens almost every day, I'll see it and I'll say, "Ah, there goes an eagle. It's flying right over the car."

Ann Wagner: Yeah, and I feel his joy and delight in that moment, and we've talked about it, that this grief will show up and it tells him what he stands for. He loves me and he wants belongingness. Luckily, we are able to find many, many, many other ways to have that. This isn't about not feeling the grief, it's not about conquering it, preventing it from showing up. Walking our journey together is about understanding that every day the grief of not having those moments of connectedness the way he might most want, the blindness is interfering, it's creating this grief and yet we can validate it, and have compassion for it, and still feel close.

Marc Arneson: Those are wonderful stories, you guys. I am curious, is there anything that you would say to somebody who feels like they may not have permission to experience or feel loss for their spouse's vision loss? Is there anything you'd want to say to somebody who maybe doesn't feel like they have permission to experience or feel that loss?

Ann Wagner: Well, I would just want to validate, if you're feeling it, it's real and it's trying to tell you what you care about. It's really, really important to validate our own reality because our core knows our truth, and we do have permission to experience it, to talk with it, our own inner experiences. We can talk with the grief and understand it. I would encourage people to talk with the other person in their life, the person with vision loss.

Eric Ringham: And that's important to me because when people describe me as a caregiver, I think, "Oy." It is absolutely no different from any other relationship, any other marriage, I think. Each partner brings certain skills and lacks certain skills. Ann is good at showing up with psychological expertise and showing people loving kindness, warmth, and support. And I'm good at reading soup labels and driving cars. It doesn't mean that I'm caregiving when I do the part that I'm good at.

Marc Arneson: Yeah. So, it's clear that you guys have a lot of fun together too, just from your stories. Can you guys share a time where maybe you can look back on it and chuckle now, or laugh at an experience that maybe you had together maybe because of your vision loss, Ann?

Ann Wagner: Yeah, there are so many, and they happen almost every day. Something will happen that will have a smile or chuckle that's actually been created by the blindness, so we both appreciated what the blindness brings. It isn't always stress or grief. They might not be funny to other people, and they're hard to remember. I was thinking about... He'll pull out the car from the garage and I think I'm feeling the front door, and I've opened the back door. And suddenly I'll hear his voice, he's like, "Well, okay, if you want to feel like you're being chauffeured," like I'm going to get in the back seat.

He's got this dry humor that cracks me up, and suddenly his voice is coming from a direction slightly different than what I was expecting. It's that kind of thing that just happens. There’re other funny things. I don't know what it is about when I drop something, and I'm feeling for it, Eric will just start laughing and he's like, "Once again, it's like you have anti-radar." Because I listened to where it fell, and you'd think I'd get good at locating it, but I'm moving around, I think I'm doing it in a grid pattern, and I miss it.

Eric Ringham: It's amazing how her hand will describe the outline of the things she's looking for-

Ann Wagner: And I miss it.

Eric Ringham: But she won't find it.

Ann Wagner: And then he'll say, "To the right. Go to the right more."

Marc Arneson: How important is it for you guys to recognize these moments, and look back on these moments, and incorporate them into your marriage?

Eric Ringham: On a scale of 1 to 10, about 11 or 12. We take great pride in being able to embrace the sheer physical comedy that we sometimes get involved in, and I think it's a big part of our identity. There are these new therapies coming out all the time, gene therapies and things, that can restore partial sight if other conditions are right. So it becomes an actual possibility, "Is this something that you'd want to think about?" And Ann has had to think a little bit about what it would be like for her to submit to that kind of therapy, and I've had to think a little bit about what it would be like if Ann could suddenly get a good look at me. I don't know if that would be in my interest.

Ann Wagner: So we do laugh.

Eric Ringham: But the vision loss, it's something that I walk alongside as well as Ann walks alongside. It's a third wheel in our relationship sometimes.

Ann Wagner: But it doesn't define either one of us, and it doesn't define our relationship. It is here, and it creates all sorts of interesting moments.

Marc Arneson: I love that. No, I think that's a great point. Is there anything that you guys want to leave our audience with?

Ann Wagner: Isn't it interesting, as human beings we yearn to feel like our experiences and our stories can be shared by somebody else? It goes back to ancient peoples, which is why they drew their stories. Before language, before words, they drew their important stories on cave walls with the idea that either their future self might see it, or another human being would see it so they could feel less alone. Because loneliness, it's so painful. And yet it tells us, our core is we are built for relationships and belongingness. We are social creatures, and our stories matter, and our experiences matter.

Marc Arneson: So nice, Ann, and so great that you guys are experiencing this together. You have each other-

Ann Wagner: Yes.

Eric Ringham: We do.

Marc Arneson: To experience this together. Hey guys, thank you so much for just being on and just sharing. The thing I appreciate also is, you're just sharing about your life. You're very open, and honest, and vulnerable with your feelings, and emotions, and your lives.

Ann Wagner: Yeah, we found that it helps us feel healthier. Or I should speak for myself, when I can be real and authentic, those village moments again, when two people show up real and authentic and trusting that we can share from our core what really matters to us, it's just a beautiful feeling, and it's revitalizing or it's healthy.

Marc Arneson: Thank you so much for this conversation today. I really appreciate it.

Eric Ringham: Thank you. It's been a pleasure, Marc.

Ann Wagner: Thank you.

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