Finding Emotional Support with Vision Loss

Hadley

Finding Emotional Support with Vision Loss

Presented by Ricky Enger

Ricky Enger: One of the most important discoveries you can make on your vision loss journey, is finding out that you are not alone. In this episode, Marc Arenson, Cristi Stearns, and Cliff Hochberg join us to discuss an offering from Hadley for adjusting and coping together. I’m Ricky Enger and this is Hadley Presents.

Marc Arneson: Ricky, it's great to be here today. My name is Marc Arneson and I am the director of the Donahoe Center for Support here at Hadley. 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.

Cliff Hochberg: Hey there.

Cristi Stearns: Hi. Thanks for having me.

Marc Arneson: Cristi, do you mind introducing yourself and telling us a little bit about what you do here at Hadley?

Cristi Stearns: 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.

Marc Arneson: That's great. And Cliff, thanks for joining us today. So, I know we're going to spend some time talking about our adjusting and coping together support group today. That's what our episode's a little bit about. But maybe before we get there, Cliff, do you mind just introducing yourself a little bit and telling us a little bit about yourself?

Cliff Hochberg: 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 not a genetic thing I was born with. It's 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 then friends and family. Then about seven years ago, I closed my chiropractic doors just to do my health coaching. So, I am very aware of the importance of support and that's one of the things that really attracted me to Hadley.

Marc Arneson: That's great. Thanks for sharing Cliff. So, chiropractor for 30, is it 30 years you said?

Cliff Hochberg: Yeah, yeah, 30 years.

Marc Arneson: And now a life coach. That's wonderful. 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 vision is right now, Cliff?

Cliff Hochberg: Sure. I suffer from something called neovascular glaucoma, and it's relatively rare. From what I understand, it affects about 3 to 5% of all 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 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 they put in a medication that's called an anti-VEGF medication. And what that does, it stops these new unwanted blood vessels from growing.

I was getting these injections about every two months, and my doctor said that 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'll be able to go for longer periods of time. Would you be open to trying that? I said, yeah, of course. 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 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 for Monday, and that weekend I just started not seeing, well, my vision was changing in my left eye. It looked like there was a big smudge on the window. I couldn't see through that smudge and both eyes, the quality really started changing and I kind of got worried and I said, well, maybe I have some kind of irritation to my cornea or something. I said, well, I'm going to see the doctor tomorrow. We'll go in. And I went in and instead of being between 10 and 21, it was in the sixties.

Marc Arneson: Oh, my goodness.

Cliff Hochberg: Yeah. And that's what the doctor and the staff said as well. And they said, “What are you feeling? What kind of symptoms do you have?” And I said nothing. They said, you should be having typically horrible headaches 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 an 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'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 my body really.

So that was the surgical medical/surgical treatment. And then the insurance company did approve that other medication, the other substance which they injected, which worked out great. And right now, 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 which left me with the vision loss that I have. I am not blind, but the quality of my vision is radically worsened. And that's kind of what happened. So, it was not anything that happened over the course of years, it happened relatively quickly. And of course, there was not much time emotionally even to react to this whole thing, and it was quite a loss.

Marc Arneson: Well, thanks for sharing all that, cliff. I really appreciate just hearing your story. And Cristi, as you know, we end up talking to quite a few folks who are turning to Hadley for help. We oftentimes hear that. I think you mentioned the emotional piece to it, Cliff, that sometimes that can be as challenging if not more challenging than some of the day-to-day challenges that come with vision loss as well. One of the things that we want to do here at Hadley is we want to offer an opportunity or a space for folks to be able to share and talk about those difficult emotions that can come with vision loss. Our Adjusting and Coping Together group, which was kind of the idea, brings folks together who are 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? You've done a lot of work in building this program and also you're facilitating these groups as well. So, do you want to share a little bit more detail Cristi?

Cristi Stearns: Absolutely. The group is an eight-week virtual support group that you can participate in either by phone or by Zoom. And it really just allows those adjusting to vision loss, the chance to share with others 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 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 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.

Marc Arneson: 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? How did you decide that this was something that you wanted to be a part of?

Cliff Hochberg: Well, Marc, like I mentioned before, as a coach myself as a health coach, I know the importance of support. It is really key. I mean 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. I had actually 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 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's interesting too, because Elsa Vota, the visual occupational therapist, 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, mobility specialist, to 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 iPad and all that. But the other thing that was in that packet was Hadley. I went for about four or five sessions to the occupational therapist, and every time she would go, “Hey, have you checked out Hadley yet? “I said, no, it's on my list. And then at one point I think I went to the website, and 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 comparison to what you have.

Eventually, I did delve into Hadley. I mean, I had a voracious appetite when I started looking at the workshops. So much information in a kind of low vision desert out there. But when I heard and realized that you did offer support, I said, okay, I knew the importance of it. I said, 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. And Cristi, I think you have a degree in counseling, is that correct?

Cristi Stearns: I do, yes. Cliff, I'm a licensed professional counselor.

Cliff Hochberg: And this wasn't just any kind of group therapy counseling. Really what you did, you really gave us a space to share and to learn from each other and to experience the fact that we're not alone. 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.

Marc Arneson: You call it the desert, desert of resources or something,

Cristi Stearns: Low vision desert.

Marc Arneson: Low vision desert.

Cliff Hochberg: Yeah, that's kind of what I view it as, because unfortunately, no matter how good they are, your ophthalmologist, that's not their job. Really. Their job is to manage you medically. And so, my ophthalmology group contracts a company called Loma Health, and my Loma nurse said to me, by the way, do you know about Hadley? And I said, yes, I do. She said, “I don't live far from there.” And I went down to visit Hadley, and she said, “I can't tell you how impressed I was with everything they have to offer.”

Marc Arneson: 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 folks and some of the challenges that we're hearing, that they're sharing with us. I think that's where this group kind of came out of, 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 forming these groups. Cristi can you share a little bit about how that works, getting these groups formed together?

Cristi Stearns: Yeah, absolutely. So, when our members like Cliff call and share whether they're looking for emotional support or as we're just talking with them, learning how we can help them here at Hadley. We do have just a short screening tool that we use to help us get to know our members. We take all of those factors into consideration and just kind of group people together in ways that we feel that they will benefit from one another, that they're in a place where they are looking for support, but also are willing to share about their vision loss openly as well. And it's been really wonderful to see the group members come together and 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 build just by learning that they're not alone in their vision loss.

Marc Arneson: I am curious, going back to the group. Cliff, I know it's been a little bit of time since you participated in the group, but was there any topic 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 things like that. Was there anyone in particular, Cliff that kind of stood out to you that you remember?

Cliff Hochberg: Yeah, actually there was. It's funny, Cristi, I think the one you gave an example before was probably the one that affected me the most. Talking about grief and loss. When this hit me, it was pretty intense, emotionally. I remember in the beginning, I mean, I had just a day where I would wake up and everything's fine when I was in bed, and then I open my eyes and turn the light on and I go, oh my God, there it is. It just doesn't go away. I look forward to going to sleep so that I didn't have to deal with this problem seeing. And then I'd wake up and I realized that there it is. 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. I think with any major loss, there's grief.

And I learned about grief way back in college, and I thought it was to be a stage that, okay, first you have, I don't remember what they were like anger or sadness, and you go through these different stages to acceptance. So, I imagined that it was stages like that. But what 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. The anger isn't there. And then one day I wake up and there I am again feeling sad, depressed, angry, and I come to realize that it's really not a continuum. It's more like you can cycle in and out of these which I didn't realize. And that was an important one for me because hearing that and hearing other people's stories made me realize that I'm not alone.

And it was normal to be going through that. And during Hadley, I talked to a therapist as well. I had never really been to therapy. And I went to a therapist for a couple of visits, and she said, “Cliff, you know what? 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 said as a therapist, psychotherapist, she said, “I don’t want to create a problem that is not there. The support you're getting, that's really what you need and that's going to help you. It's going to help everybody else in the group as well.” And that was good to know.

It might have even been the same session, but we spoke about the loss of not being able to drive. And that was a big one for me. I mean really big. Because when I first realized I wasn't going to drive, I said to myself, how can that be? It broke all the norms that I had about being an adult. I'm also a musician and 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 show her. And she's wonderful. She's been so supportive. But that was a big one, really. And you don't realize that just throughout the day you say, I think I want to go out and get a cup of coffee at a Starbucks or whatever. I just can't do that. I have to coordinate that with my wife or catch up with a friend. There was so much about the driving piece that everybody shared and that topic. So, I think the grief and loss in driving were the two biggies for me.

Marc Arneson: Thank you for sharing all that Cliff and just being so open about some of the challenges too. I appreciate how honest you are. We wanted to be really intentional in the topics that we were choosing for these eight weeks, because similar to your sharing about 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, and 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 one of those moments that is really defining for a lot of people.

Cliff Hochberg: And I think one of those big defining moments was also 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 the nail driving it right through, because I said, okay, there it is. There's one car that made it very, very clear that I can no longer drive.

Cristi Stearns: I agree, Cliff. I've heard that from many other members too. It's like the loss of that physical property too. It's like that definition of, okay, we're really doing this. Maybe there's some hope if we still have the car in the driveway, but once you get rid of it, that's it. And I've heard that from other members as well.

Cliff Hochberg: Now every cloud has a silver lining, so we don't have that much insurance that we were paying. Right, exactly. I tend to say, okay, what are the positives?

What choice do we have, really? Right. 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 go into a deep depression.

Cristi Stearns: Yeah, that sounds about right.

Cliff Hochberg: Yeah. That scared me because that is not my nature. And when I had those brief episodes of the sadness from experiencing the loss and the grief, when I realized that by utilizing a group like Hadley and the kind of support that you offered that I could stave off the likelihood of getting into a depression, that was also very important to me.

Cristi Stearns: I think that brings up a really great point, cliff. 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 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 may not be exactly in the same place 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 thereby avoid keeping those feelings within themselves. And like you said, slipping into something deeper, whether it's depression or anxiety. And so that was a great point and thank you for pointing that out.

Cliff Hochberg: Yeah, you're welcome. And the other thing too, which some of the listeners who are listening to this podcast, I hope that you're also taking advantage of the Insights and Sound Bites. Is that the name of it?

Marc Arneson: It is.

Cliff Hochberg: Which is wonderful. 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 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 they're all there. You have them, and you can just listen to one after another. And whenever I might feel a little bit down, listening to somebody else's story is very reassuring that we can all get through this stuff.

Marc Arneson: And that's kind of the idea with the insights and soundbites, 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 folks are calling us and letting us know, “Wow, I really found some hope just by listening to this episode of this Insights and Sound Bites.” And Cristi, I also know part of the opportunity for the group really, we were trying to give an opportunity for folks to be in this safe space together and share some of these difficult emotions that they're experiencing. But I think the other piece of this is taking away some of the ways to cope with some of these challenging emotions as well. If you want to talk a little bit about the idea of adjusting and coping together. And Cliff, I'm also curious if there's anything that you took away from the group that you still turn back to or find helpful now?

Cristi Stearns: Sure. Yeah. As we are talking, the members are sharing their various stories and challenges that arise from week to week or even if they've been in the past, something that really sat with them and sharing about how they dealt with it at the time. 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 just communicating needs clearly 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 people connecting with one another and sharing ideas and sharing what worked for them versus what might work in another situation. 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 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, that's a win, that's a positive. You start from there and then you build from that space, and then maybe a few days later you try something new. It really is so important just to encourage yourself 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's something that you remember or if you felt like that was helpful.

Cliff Hochberg: Yeah, it's funny. I think back on the things that I remember, I've learned a lot from hearing what people shared their coping skills. 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 always felt like I was giving you a list of things that you had to go researching and send out to everybody.

Cristi Stearns: No, no. It was wonderful. And it is nice to have those resources that maybe we don't know about, or it was a nice reminder. L thought yeah, that's something that I should point out, or that's something that everyone would benefit from. And you were wonderful,

Cliff Hochberg: Thank you. But I think the overriding thing was really just connecting to the community, the knowing, the connecting 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 connection and the feeling of everything's going to be okay going forward and we can all get through it.

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

Marc Arneson: That's great. Cristi, if somebody listening wants to learn more about how to get involved or participate in the group, can you tell us a little bit about how they would go about doing that?

Cristi Stearns: Sure. Yeah. They are welcome to call our Center for Support and speak with our team there. Again, we talk with them about the group itself and what they can expect. And we go through just a brief getting to know you screen. They can reach us at our 800 number, 800-323-4238. And then once we have their information, they can expect to receive a callback once our next group begins.

Marc Arneson: Well, Cliff, thank you so much for spending some time with us here today and Cristi too. We're excited about the group, and I think there's a lot of folks that are finding some help through participating in these groups. So just appreciate you sharing your story and just joining us here today.

Cliff Hochberg: 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.

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

Ricky Enger: Yeah, absolutely. I just want to thank all of you, Cristi, Cliff, Marc for dropping by and chatting about this program. For sharing all of these wonderful things. If you’re listening and you want to get involved, maybe you want to learn more or hope 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.

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