Finding Emotional Support with Vision Loss

So I kind of oversee some of the emotional and social support programming that we do here. And with me today is Cristi and Cliff. Welcome to the show, Cristi, Cliff. Hey there. Hi. Thanks for having me. So, Cristi, do you mind introducing yourself and telling us a little bit about what you do here at Hadley? Sure, yeah. My name is Cristi Sterns.

I'm the clinical support specialist here, which means I spend a lot of time introducing people to Hadley and the many services we offer, and I'm also involved with a lot of the social and emotional programming here. That's great. And Cliff, thanks for joining us today. So I know we're gonna spend some time talking about our adjusting and coping together support group today. That's what our, our episode's a little bit about.

But maybe before we get there, cliff, do you mind just introducing yourself a little bit and just telling us a little bit about yourself? Sure. Hi everybody. My name is Cliff Hochberg. I live in New Jersey. I did not have a visual impairment until I began to have one. It's, it's nothing that I was, it's not a genetic thing. I was born with something that came on upon me. So what I do in my spare time is I am a health coach.

I was a chiropractor for 30 years and when I helped myself, I ended up helping my patients rather, and, and then friends and family. And then about seven years ago, I closed my chiropractic doors just to do my health coaching. So I, I'm very aware of the importance of support and that's what really one of the things that really attracted me to Hadley. That's great. Thanks for sharing. Cliff. That's so chiropractor for 30, is it 30 years you said? Yeah, yeah, 30 years.

And now a life coach. That's, that's wonderful. So you mentioned that you started experiencing vision loss a little bit later in life. Do you mind just sharing a little bit about your vision loss and maybe a little bit about your story or what your kind of vision is, is kinda like right now, cliff?

Sure. I suffer from something called neovascular glaucoma, and it's relatively rare, from what I understand, it affects about three to 5% of all the cases of glaucoma, which is a subset of vision loss in and of itself. So it is pretty rare. What happens is that my body will create excess blood vessels that shouldn't be forming in and around the drainage angles of the eye.

So these blood vessels start to form, and what happens is they block the ability for the fluid to drain, and that causes an increase in pressure in the eye. So what happened was just from routine eye exams, it was determined that I had this, but it was managed quite well between eye drops and also getting injections into my eye. And, and they put in a medication that's, it's called the an anti VG F medication. And what that does, it stops these new unwanted blood vessels from growing.

So I was getting these injections about every two months, and my doctor said, you know, there, there's really a better medication that's out there that we can give you, which is more durable, it's more effective, and you know, you'll be able to go longer periods of time. Would you be open to trying that? I said of Yeah, of course.

So I, I got, I went for the other injection and then it was coming right around two months when I would be getting my regular checkup and seeing how my, my pressure was doing. And so what happened was, right around that time I was coming in for my next injection and checkup. That weekend I had an appointment scheduled on Monday, and that weekend I, I just started not seeing, well, my vision was changing in my left eye, but it looked like there, like there was a big smudge like on the window.

I couldn't see through that smudge. And, and both eyes, you know, they all, it just, the quality really started changing. And I got, kind of got worried and I, I said, well, you know, maybe I have some kind of irritation to my cornea or something. I said, well, I'm gonna see the doctor Tomorrow'll go, we'll go in. And I went in and instead of being between 10 and 21, it was in the sixties. Oh my goodness. And that's what the doctor and the staff said as well. And they said, what are you feeling?

You know, what kind of symptoms do you have? And I said, nothing. They said, you should be having typically horrible headaches, you know, wanting to vomit. I mean really, really, this is pretty extreme. Ultimately what happened was that interim medication didn't do anything for me. So in essence what happened was I went two months without being treated. I ended up going to a eye emergency room in Philadelphia about an hour away, which blew my mind that there's actually an eye emergency room.

But they said, really, ultimately you, you're going to be needing surgery. And within a couple of weeks I ended up getting shunts put in my eyes, one in each eye, which is, if you think about it, it's like a pressure release valve. So as the pressure would increase, these shunts would shunt out that extra fluid out of the inside of my eye and just let it drain into the, into my body really. So that was the surgical medical slash surgical treatment.

And then the insurance company did approve that other medication, the other substance which they injected, which worked out great. And you know, right now, i, I go about every three months or so with the injections and it works really, really well. Unfortunately, the damage to the optic nerves from that episode did permanent damage to my optic nerves with, left me with the vision loss that I have. I am not blind, but my quality of my vision is radically worsened.

And that's, that's kinda what happened. So it was not anything that happened over the course of years, it happened really relatively quickly. And of course there was not much time emotionally even, you know, to, to react to this whole thing. And it was quite, quite a loss. Well, thanks for, thanks for sharing all that, cliff. I really appreciate just hearing your story. And Cristi, I, as you know, you end up talking to quite a few folks who are turning to Hadley for help.

And we oftentimes hear that, I think you mentioned the emotional piece to it, clip that sometimes that can be as challenging if not more challenging than some of the, you know, the day-to-day challenges that come with vision loss as well. And one of the things that we wanted to do here at Hadley is we wanted to offer an opportunity or a space for folks to be able to kind of share and talk about those difficult emotions that can come with vision loss.

And so with our adjusting and coping together group, that was kind of the idea is to, to bring folks together who are kind of going through something similar and have an opportunity to talk with each other about how difficult this can be sometimes. And Cristi, do you mind sharing a little bit more about our adjusting and coping together and, you know, you've done a lot of work in building this program and then also you're facilitating these groups as well.

So do you wanna share a little bit about, a little bit more detail about adjusting and coping together, Cristi? Absolutely. So the group is an eight week virtual support group that you can participate either by phone or by Zoom. And it really just allows those adjusting to vision loss, the chance to share with others who, who get it about the challenges and often difficult emotions that they feel related to their vision loss.

Each week focuses on a specific emotion such as grief and loss, maybe about giving up the car keys or, or some other loss that they've experienced due to vision loss. Also feeling lonely and isolated things that set us off causing anger and frustration, changes to relationships, also changes to self-esteem and a couple of other topics.

We also spend time within each group talking about coping skills to help, you know, get our members through these difficult emotions like learning to recognize the feelings, having patience and self-compassion as well as communicating clearly and talking openly with others to help them. That's great. So Cliff, you've actually participated in one of our sessions, our eight week sessions.

Was there something about the group, or what was it about the group that you found interesting was, you know, how did you decide that this was something that you kind of wanted to be a part of? Well, Marc, like I mentioned before, as a, as a, as a coach myself, as a a health coach, I know the importance of support. It is really key. I mean that, that even support is baked into the work that I do. When I heard that Hadley had something like this, it kind of piqued my interest.

And I had actually even been searching a little bit to find out if there were support groups around. I had gone to a low vision optometrist who had referred me to a visual occupational therapist. And I, I went to about four or five sessions with her. It was great. She gave me lots of resources. So I was looking, I was searching, I was hoping that there might be something around.

And it, it's interesting too, because Elsa Voda, the, the Visual Occupational therapist, when I first met her, she gave me a packet of information, which was all kinds of different resources. And I started going through those resources and using them one at a time. One of them being the New Jersey Commission for the Blind. They were wonderful. They sent someone out, a mo a mobility, a specialist, teach me how to use a white cane when I need it.

They sent someone else to help me with setting up my computer and my laptop and my, my iPad and all that. But the other thing that was in that packet was Hadley. And you know, I, I went for about four or five sessions to the occupational therapist and every time she would go, she goes, Hey, have you checked out Hadley yet? I said, no, you know, it's on my list.

And then at one point I think I, I went to the website and I, I said, wow, this is a really incredible organization because I had never seen such a visually accessible website in anything that I've looked at in, in comparison to what you have. Eventually I did delve into Hadley. I mean, I, I had like a voracious app appetite when I started looking at the workshops. And you know, you so many, I, you guys offer so much information in a kind of like a, a, a low vision desert out there.

But when I had heard and realized that you did offer support, I said, okay, I knew the importance of it. I said, let, this sounds really great. And I signed up and that was great. And Cristi was phenomenal. I mean, really wonderful woman who was able to facilitate, you know, and Cristi, I I think you, you have a, a degree in counseling, is that correct? I do, yes. Cliff, I'm a licensed professional counselor.

Yeah. And this wasn't the any kind of group therapy counseling, really what you did, you really gave us a, a space to share and to learn from each other and to experience the fact that we're not alone. And the topics that you had were wonderful. I found that it was a great group of people. It was similar in age. Everybody had a different visual impairment.

I mean, some much worse than me, but everybody, we all have our own journey and sharing that and hearing everybody else's journey, it's very comforting. What'd you call it? The desert, desert of resources or something? Low vision desert, low vision desert. Yeah. That's kind of what I, I view it as, because you know, unfortunately, no matter how good they are, you, you know, your, your ophthalmologist, that's not their job, really. Their job is to manage you medically.

And so my, my ophthalmology group contracts a company called ADA Health, and my ADA nurse said to me, by the way, do you know about Hadley? And I said, yes, I do. And she goes, well, you know, she goes, I don't live far from there. And I went down to visit Hadley and she goes, I can't tell you how impressed I was with everything they have to offer.

Well, that's nice to hear. Well, I'm glad you found us, cliff, and I think part of what we're trying to do is just respond to, to folks and, and some of the challenges that we're hearing, they're sharing with us. And I think that's where this group kind of came out of was, you know, I think folks were having a difficult time finding a space where they could share with others about how challenging this is. But you did ask an interesting question about the idea of like, forming these groups.

Kristi, I dunno if you can share a little bit about like kind of how that works. Like, you know, getting these groups kind of formed together. Yeah, absolutely. So when our members like Cliff call and, and share whether they're looking for emotional support or as we're just talking with them, you know, learning how we can help them here at Hadley, we do have just a, a short screening tool that we use to help us get to know our members.

And we take all of those factors into consideration and just kind of group people together in ways that we feel that they will, you know, benefit from, from one another. That they're in a place where they are looking for support, but also, you know, are willing to share about their, their vision loss openly as well.

And it's been really wonderful to see the, the group members come together openly share about their challenges and the emotions and the feelings often for the first time ever and come to support each other. It's really wonderful to see the confidence that they've built just by learning that they're not alone in their vision loss.

I, I am curious, going back to the group, so Cliff, you know, it's been a little bit of time since you, you know, participated in the group, but was there, was there any of the topics that stood out to you in particular? I know that Cristi, I think you mentioned it's eight weeks and each week we're touching on a different topic related to vision loss, like anger and frustration or grief and loss or identity and self-esteem and things like that.

Was there anyone in particular Cliff, that kind of stood out to you that you remember? Yeah, actually there was, it's funny, it's funny, Cristi, you, you, I think the one you gave as an example before was probably the one that affected me the most. And that was talking about grief and loss. You know, when this hit me, it was pretty intense emotionally.

I, I, I remember in the beginning, I mean, I had a, I had just a day where I would wake up and everything's fine, you know, when I was in bed, you know, and then I open my eyes and turn the light on and I go, oh my God, there it is. It, you know, it just doesn't go away. I, I look forward to going to sleep so that I, I didn't have to deal with this problem seeing, and then I'd wake up and I realize that, you know, there it is. And, and at times I would be really, really sad.

I mean, I can remember one time sitting in the kitchen and just crying my eyes out. You know, I, I think with any major loss, there's grief and, you know, I, I learned about grief, you know, back in, way back in college. And I thought it was to be a stage that, okay, you know, first you have a, I don't remember what they were, like anger or sadness, and, and you go through these different stages to acceptance. So I imagined that it was stages like that.

But what I was kind of confusing to me was that I would have days where I'm okay, I am accepting this pretty well, I'm coping, I am, the anger isn't there. And then one day I, you know, I'd wake up the next day and like there I am again, you know, feeling sad, depressed, angry. And I come to realize that it's, it's really not a continuum.

It's more like you can cycle in and out of these different, which I didn't, I didn't realize, but hearing and that, that was an important one for me because hearing that and hearing other people's stories, it made myself realize that I'm not alone. And it was normal to be going through that. And during Hadley, I had, I had seen, I said, you know, let, let me talk to a, a, a therapist as well. I had never really been to therapy as, and I went to a therapist for really a couple of visits.

And she said, Cliff, you know what, you, you, you're psychologically very healthy. She said, this is something that is going to be coming back and forth, and what you're doing with this group is probably one of the most important things. She goes as a therapist, psychotherapist, she said, I, I, I don't want to create a problem that is not there.

She said, but the support that you're getting, that's really what you need is, is wonderful and that's gonna help you, it's gonna help everybody else in the group as well. And that, that was good to know. And the other, the other might have even been the same session, but we spoke about, you know, the loss not being able to drive. And, and that was a big one for me, I mean, really big. Because when I first realized I wasn't gonna drive, I, you know, I said to myself, how, how can that be?

It broke all the norms that I had about being an independent adult. I'm also a, a musician and you know, I, I have gigs that I play and I'm used to getting in my car and packing up my drums, driving to the gig. Well, I said to my wife, now you're also my roadie and my chauffeur. And she's wonderful. She's so, she's been so supportive. But that was, that was a big one, really, you know, and you don't realize just throughout the day.

So, you know, I, I think I want to go out and, you know, get a cup of coffee at the, at a Starbucks or whatever. I just can't do that. I have to coordinate that with, with my wife or, or, you know, catch up with a friend. There was so much about the, the driving piece that what everybody shared and that topic. So I think the grief and loss and the driving were, were the two biggies for me. Thank you for sharing all that cliff, and just being so open.

You know, about some of the, the challenges too. I appreciate how honest you are. We were, we, we wanted to be really intentional in the topics that we were choosing for these, these eight weeks. Because similar to your sharing about, you know, the challenges of not being able to drive Cliff, we hear it from so many other people too.

Somebody I was talking to, I think when I asked them to just share about the moment they decided they couldn't drive in you, she's like, oh, you want me to tell you what my trauma story was, the way that she put it. So I think it's, it's one of those moments that is really defining for a lot of people. Yeah. And I, I think one of those big defining moments also was when we realized that we didn't need that second car. It's like, wow, getting rid of that second car.

I mean, that really was like the nail driving it right through, because I said, okay, there it is. There's one car that was, made it very, very clear that I can no longer drive. I agree, cliff. I've heard that from many other members too. It's like the loss of that physical property too, right? It's like that definition of, okay, we're, we're really doing this, you know, maybe there's some hope if we still have the car in the driveway, right? But once you, you get rid of it, it's, that's it.

And I've heard that from other members as well. Now every cloud has a silver lining, so we don't have that much insurance that we were paying. Right, exactly. Yeah. I I tend to like say, okay, you know, what are, what are the positives, you know, what choice do we have really? Right. You know, it's, I mean, that's the other thing too, Cristi, I don't know if this is, I heard that you're like 40% more likely to, to go into a deep depression. Yeah, that sounds about right.

Yeah. That, that scared me. You know, and because that is not my nature. And, and when I had those brief episodes of, you know, the, the sadness from the experiencing the loss and the grief, when I realized that by us utilizing a, a group like Hadley and the kind of support that you offered that I could stave off the likelihood of, of getting into a depression, that was also very important to me. I think that brings up a really great point, cliff.

You know, another thing that one of my group members recently brought up to me within the last week or so, actually, they said, it's hard to be brave all of the time. And this group really gives our members the chance to let the walls down and, and let those feelings out with other people who just totally understand what they're going through. And again, they may not have the same vision diagnosis.

They, they may not be exactly in the same place you in their vision loss journey, but these sessions give them the opportunity to not have to be brave, which is kind of interesting because they are being very brave just by coming to the sessions. But it gives them the opportunity to let it all out and, and thereby like avoid, you know, kind of keeping those feelings within themselves.

And like you said, you know, slipping into something you know, deeper and whether it's, you know, depression or anxiety. And so that was a great point, and thank you for pointing that out. Yeah, you're welcome. And the other thing too, which some of the, the listeners who are listening to this podcast, I hope that you're also taking advantage of the insight and soundbites, is that the name of it? It is.

I mean, there are little snippets of people's stories and just hearing, not even connecting with the individual speaking, but just hearing about what people are going through and how they can get through this and how they are getting through it is very, I don't know, freeing or, I, I don't really know the right word, but it is very, very helpful, I'll put it that way. And what I love about it is that you have, they're all there. I mean, you have them and you can just listen to one after another.

And whenever I might feel a little bit down, you know, listening to somebody else's story is very reassuring that we can all get through this stuff. Yeah. And that's kinda the idea with the insights and sound bites, right? It's like, in these difficult moments, what is it or who is it that kind of helped me get through it? And so we do hear that as well, cliff, like folks are calling us and letting us know.

Wow, I really found some hope, you know, just by listening to this, this episode of this, this Insights and Sound Bites. And Cristi, I know also part of the, you know, the opportunity for the, the group really, we were trying to give an opportunity for folks to be in this safe space together and share, you know, about some of these difficult emotions that they're experiencing.

But I think the other piece of this is, is taking away some of the ways to cope with some of these, these challenging emotions as well. I dunno, if you wanna talk a little bit about, you know, the idea it's adjusting and coping together, and Cliff, I'm also curious if there's anything that you took away from the group that, that you, you still kind of turned back to or find helpful, you know now?

Sure. Yeah. So we, you know, as we are talking about, and the members are sharing, you know, their, their various stories and, and challenges that, that arise, you know, from week to week or, or even if they've been, you know, in the past and just something that, you know, really sat with them and sharing about how they dealt with it at the time.

You know, we have a portion of each group dedicated to talking about coping skills and really just reminding each other to be patient and have self-compassion. But a lot of it is also, you know, just communicating needs clearly and, and talking and learning how to talk openly with others. And as we continue on in the group, that becomes more and more apparent.

You could see, you know, people connecting with one another and, and sharing ideas and, and sharing, you know, what worked for them versus, you know, what might work in another situation. And, and just helping them build confidence, such a large loss can trigger lots of self-confidence issues. Like, well, I used to be able to do this and now I can't do anything. But, you know, breaking it down.

And even if it's just the one thing that you can do in a day is that you get up out of bed, you know, that's a win. You know, that's a positive. You start from there and then you, you build from that space and then maybe, you know, a few days later you try something new. It really is, you know, so important just to encourage yourself and, and give yourself the pat on the back for what you can accomplish in the day, not what you can't accomplish anymore.

Cliff, I don't know if that that's something that you remember or if you felt like that was helpful. Yeah, you know, it's funny, I think back of, of the things that I re re remember, I, I've learned a lot from hearing what people shared their coping skills and, you know, I remember bringing, any time I found something out there that could help other people, the fact that I could bring it to the group and have someone else learn about it.

Cristi, I felt bad. I, I always felt like I was, you know, giving you a list of, of things that you had to go research and, and, and send out to everybody. No, no, it was wonderful. And, and it is nice to have tho those resources that, you know, maybe we don't know about or it was a nice reminder like, oh yeah, that, that's something that I should point out or that's something that everyone would benefit from. And you were, you were wonderful, Thank you.

But I think the, the overriding thing was really just connecting to the community, the knowing, the connecting to the, to other people who are going through this. I think it was Maya Angelou, she said, people will forget what you said, they'll forget what you did, but people will never forget how you made them feel. And I think that's really what I got out of this. The feeling of, of connection and the feeling of everything's gonna be okay going forward and, and we can all get through it.

It is really, and just remembering that, you know, the they're not alone and that, you know, every week, you know, the members show up and, and hear from one another no matter what they're going through and, and supporting one another. And just really that, that sense of community, like Cliff said, and just support, you know, from each other.

That's great. So, so Cristi, if somebody listening wants to learn, know more about how to, how to get involved or participate in the group, can you tell us a little bit about how they would go about doing that? Sure, yeah. They are welcome to call our center for support and, and speak with our team there. And again, we talk with them about, you know, the, the group itself and what they can expect.

And we go through just a brief, you know, getting to know you screen and, and they can reach us at our, our 800 number, the 803 2 3 4 2 3 8. And then once we have their information, they can expect to receive a callback once our, our next group begins. Well, cliff, thank you so much for, for spending some time with us here today and Cristi too. We're excited about the group and you know, I think there's a lot of folks that are finding some help through, through participating in these groups.

So just appreciate you sharing your, and just joining us here today. My pleasure. And I hope that the listeners will take advantage of what you have to offer, everything that Hadley has to offer, but especially this group, Thank you so much for, for this conversation today. I really appreciate it. Yeah, absolutely. I just wanna thank all of you, Cristi Cliff, Marc, for dropping by and chatting about this program for sharing all of these wonderful things.

And if you are listening and you wanna get involved, maybe you wanna learn more or hope that you can join a group like this, please do give us a call that's (800) 323-4238 and ask about adjusting and coping together. Thanks so much for listening. Got something to say? Share your thoughts about this episode of Hadley Present, or make suggestions for future episodes. We'd love to hear from you. Send us an email at podcast@hadleyhelps.org.

That's P-O-D-C-A-S t@hadleyhelps.org or leave us a message at 8 4 7 7 8 4 2 8 7 0. Thanks for listening.