Leslie: [00:00:00] Welcome to the
Christina: taking the lead podcast, where we empower people to be unstoppable. I'm Christina Hapner with my cohost, Leslie Haskins in Timothy Cuneo. What's been going on with both of you.
Timothy: Oh, I've got a story about glaciers. She's a super hero. Imitate this dog. The other day, we were walking down to.
And usually when I go to the doctor, I use Uber or Lyft and I get out when we get there. I say this doctor, this doctor, when I touched the door, you know, trying to familiarize her with the area, cause these buildings look the same, like four or five buildings are together. And I can't tell the difference with them.
So we went downtown early to walk our little town and my Victor reader Trek died on me. Oh no. And I'm going, oh no. How am I going to know which one of these is the building? Well, we started going down that area. Glacier find doctor's office. And she took me exactly to the right door. I could not believe it because I couldn't tell.
So when I [00:01:00] go somewhere, you know, when you're there, just say, Hey, doctor's office or library or whatever you need to, and that dog learns that. And when you say it, they'll take it to it. I couldn't believe it. I was shocked how smart this dog.
Leslie: Well, she just so proud of herself. I'm sure. She just like, yeah, that's true.
Timothy: Treats. I was, I was going, am I gonna have to yell out doctor,
Leslie: doctor? we learned more than that.
Christina: Oh my gosh. I love that. That's such a great story. And for anyone who doesn't know, the Victor reader truck is like a GPS system. Oh, my gosh. That's so great. I love hearing all the amazing things.
Leslie: Charge your GVS. Yes. I think that's so funny. You know, dogs are so intuitive and it's like, you learn all these skills and they learn all these formal skills and training and in class and all that, but then you get them home and they do, they pick up on so many other [00:02:00] things. They pattern really well. Um, they really start to learn what you need as an individual versus just kind of like.
Generic skills. Um, so obviously glacier has just really learned what Timothy needs and where he needs to go, which is so cool.
Timothy: Now she just go through the McDonald's drive through me.
Shannon: I don't think she can drive.
Timothy: No, no, she can't do that. Oh, that's
Leslie: I know, you know, they do, they do so much, but, uh, together as a team, it sounds like you guys are doing well.
I'm so glad glacier was able to get you through that. Um, and it just goes to show, right? You cannot rely on technology. Unfortunately, that's the, whether it's your accessible GPS. That's whether it's your phone, you kind of have to have all these other skills and things to rely on. So glacier. Really stepped up this time
Timothy: when we got there.
I was proud
Leslie: of, oh my gosh. I can just imagine how giddy she was and like so excited knowing she had done it. That's really sweet. [00:03:00] Wow. Thank you for sharing that Timothy. And thank you everyone for joining us today. Today. We're really excited. Cause we're welcoming back Shannon column. The last episode we really learned about Shannon and her experience with camp and the other leader, dog programs.
Today. We're really honored because Shannon has agreed to join us again, to discuss another topic that many times we don't think about. And that is the continuous journey of vision law. Yes. And just as a
Christina: little reminder about Shannon, she was diagnosed with retinitis pigmentosa at the age of two, and currently she serves on her second AmeriCorps term as an environmental educator at a local nature center in lacrosse, Wisconsin in an effort to make the outdoors more inclusive to people with disabilities, especially those people who are blind or visually impaired.
She created the website, the blind naturally. And there she currently shares her experiences, navigating nature, envision loss on her blog.
Timothy: Shannon welcome back to the show. And if you feel like it today, we want to talk about the [00:04:00] sensitive parts of the RP. For me, I went through a depression and a, you and I have the same eye disease.
So let's talk about your retinitis pigmentosa. So if you don't
Shannon: mind. Yeah, definitely. Um, you know, and I would definitely say that when I, you know, I was diagnosed when I was two, so I have really lived with this my whole life. I don't know any other. Life other than being visually impaired, having retinitis pigmentosa, but, um, you know, growing up in our rural community, um, being one of the only people with visual impairments, I mean, I felt really alone and that, especially in middle school caused me to go into a depression for awhile.
And, um, you know, I think with vision loss too, it's, it's very much. You know, it's a journey and you would go through these waves of, you know, grief and denial and acceptance, and it's just constant with vision loss. And I'm just realizing that now with my, uh, with my vision, that's just [00:05:00] recently starting to decrease after being stable for so many years.
Timothy: Even though we've got the guide dogs or we've got the cane skills I'm still going through. I mean, I contacted Leslie a couple of weeks ago because my vision is still changing and it's getting worse. And though I've got the skills, you still have that background stuff, that's going to start affecting your mental is getting worse.
Oh my Lord. Do I need to go back and get a little extra training? Which leader dog is I'm so thankful that they will let me come back and get a refresher course with the camp. But I it's still there. It's still affecting your, your mind and your, and your soul, and it's still scary. It's still scary. And that's what I get every day.
And you and I have the same similarities. We see the fireworks going off in our eyes and the floaters, and we can't see this and we can't see that. And it's just affects your everyday.
Shannon: Yeah. And, um, I think too, you know, for the longest time I [00:06:00] always said, oh, I'm going to be the lucky one. I'm going to be the lucky one.
Um, diagnosed with retinitis pigmentosa that my vision is going to be stable until I'm 60 or 70 until I'm retired. Um, and that really got me through. College because I'm going into a career that's very visual based, you know, environmental education, your identifying birds and identifying trees and, um, teaching all these people about, you know, nature.
It's very visual based and I've really had to learn how to make, um, my teaching more audible, more sensory. So then, you know, I can, um, Teach in a way that I feel comfortable as well as, um, you know, connect with my, um, my, uh, my learners. And so, you know, through, through college, I'd always say, yeah, I will be able to be an environmental educator for 10, 20 years.
My vision won't affect me. And, um, [00:07:00] That really kept me going. And then, you know, the last year or two, my vision has significantly significantly declined and I am having more daily challenges. My vision fluctuates way more than it has ever done before. It's more sensitive. I'm in the sun. I can't see that.
Well, whenever it's overcast and you know, as a few years ago, that's an early matter. I was able to, um, you know, see. Okay. In a different weather patterns. So whether it was overcast or sunny, I could see just fine. I could see enough where I felt comfortable and I could, you know, um, depend on Frazier, but also feel like I could see.
Enough to feel safe as well. And now that my vision has declined well, now I have to, you know, get used to every changing day. Every day. My vision is so different and I see you know, this, or I don't see that. [00:08:00] And, um, yeah, it's, it's definitely, um, a part of life that a lot of people don't understand. Um, and just like the constant.
Mental, I guess, strain that it takes to even just figure out, okay, what am I seeing or is my vision the same as yesterday? Or how have I always been seeing these fireworks? You know, that's something that I get caught up on is wasn't my vision, always like this, no way. I don't remember my vision doing this.
Um, so yeah, there's a lot that goes into, you know, vision loss.
Timothy: Well, I noticed when I'm stressed out, if I'm even when I'm working out on a treadmill or I'm walking real fast, your vision gets worse while you're doing this stuff. And does do, does it have that effect on YouTube? I mean, cause a cloudy day for me is great for you.
It's terrible. It just depends on your vision. It's different for everybody else. It's always different. And so what affects me may not affect you. And I just find that [00:09:00] fascinating what degrees affects them.
Shannon: Yeah, I would say when I am stressed or when I really haven't gotten a lot of sleep, that's when I get more fireworks.
That's when my, um, just recently I've noticed, it seems like the vision in both of my eyes don't really like align anymore. So I'll see like double of this or just things will kind of look like disjointed in a way. And, you know, I'll look away and usually it's like something in a distance, you know, I will see double of a person or I'll see, um, double of a trail.
And then when I look away and look closer, then everything's back to normal. But then when I look again is back. So that's something I just, I just started having to, um, deal with. But even too, um, You know, as a kid, I hated wearing sunglasses. I would never wear sunglasses because I always felt like it's made my vision worse.
Um, cause I [00:10:00] loved the sun. It made everything bright and I could see so much more. But within the last two years on sunny days, It hurts. It hurts to, to be out in the sun, especially in the snow. Um, and I really do appreciate the snow cause it makes everything brighter, but it hurts so much. So now I have to wear sunglasses pretty much every day, that sunny.
Um, and yeah, it's, it's interesting that you say overcast days are the days that you see the best, because for me, everything blends in, um, I'm very. Uh, I can see the best when things are high contrast. So for example, my phone, my laptop have high contrast settings that are, um, white on black. Uh, I have an app on my phone that turns my camera into, you know, white on black, so I can read, um, different documents, different, uh, boxes of, you know, food, different cans, really anything I can read white on black.
[00:11:00] Um, I've really noticed that low contrast, um, caused by, you know, indoors or even just on cloudy days have really impacted me recently with not being able to see
Timothy: that. Well, tell us about your degrees of depression that you've gone through in your past as you're getting. So
Shannon: I think I really had a lot of depression in middle school.
Um, you know, I really don't remember much in middle school just because that was definitely a hard time. Um, I was kind of realizing I'm different. Um, and there's no way I can change it. Um, You know, being, getting closer to being in high school. I knew that a lot of my friends, a lot of my classmates were going to be able to drive and get jobs and be successful.
And so in middle school I was wondering, well, what sucks? What am I going to be able to do? Um, and so also in middle school, and even, you know, throughout my entire school career, I had [00:12:00] always been bullied as well. I was different. I had a disability and, um, you know, I had to cope with that, uh, that bullying and I, um, was able to get through it because I had good friends and I had very supportive parents and teachers that, you know, guided me in a, um, guided me in the right direction.
So. You know, my teachers showed me resources. Um, they really helped me succeed. They were the ones that introduced me to different, um, summer camps for the blind. And I think once I started connecting with people, you know, my age who had blindness or who are visually impaired, that really opened up my, my.
My mind too. Okay. I'm not alone because I had felt so alone for the longest time. So, um, I'm not alone. And look at all these other people, look at all these other kids who have visual impairments who are [00:13:00] blind and they're just living their lives. They're adapting. They're using, um, adaptive technology.
They're using a white cane. They're using magnifiers. And, um, you know, those camps and having supportive, supportive teachers, supportive parents, supportive friends, those really, those people really helped me with, um, getting out of my depression out of my anxiety and even today, um, as I recently, you know, as I have just recently dealt with, you know, or.
Even today as I continue to deal with my gradual vision loss, I rely on my partner. I rely on my friends. Um, I rely on my heart. Um, even today as I, um, deal with my, my vision loss, I go back to those, those supporting people. I go to my partner. I go to my parents. I, [00:14:00] um, Go to support groups on Facebook. And I go to people, you know, that I know in real life, there are blind and visually impaired and just talk and just connect and relate about these things.
And that is really what helps me, um, get out of those depressions is just talking to people and realizing I'm not alone.
Timothy: Yeah. Some of the stuff you're saying brings takes me back when I was a teenager, I was made fun of. And in the back, back then they were really rough on me. And, uh, I wish I had the sources that you did.
I'm glad you found leader dog, because I think it gave you the confidence and, and, and show that you're going to be okay. And there's other people out there like. And you can just sit there and get within that group and have that support group. And I'm glad you got that. And, uh, that, that's a great story and I appreciate you sharing your, your, uh, depression and the story about your depression and how you're getting through it and coping with it every day.
Just like I am. [00:15:00]
Shannon: I think another thing too, that really helps me is just being able to share my story. Um, You know, sharing my story on taking the lead, um, at this numerous leader dog events that I've been a part of and also on my website, the blind naturalist, that is really a big, uh, Uh, way that I've been able to cope with my vision loss is by creating and writing blogs about how I navigate nature and vision loss.
And I share, uh, you know, my experiences in national parks and state parks. And through doing that, I really been able to, uh, I've been able to open up this whole new community of people that I didn't even know were, you know, blind and visually impaired that were also, um, outdoor enthusiasts. And so, um, that's been really helpful as well.
And even just, you know, not only people who are visually impaired, but other people with disabilities or people. Who are [00:16:00] helping people with disabilities, get into the outdoors, through projects and organizations that are dedicated to making a more inclusive outdoors, because that's something that's really, you know, um, that's something I'm really passionate about is getting people into the outdoors.
Um, you know, being in the outdoors myself and, um, being able to do that through my blog, hopefully through a podcast one day, Is really something that helps me cope with my vision loss, by, you know, sharing my story, sharing my experiences and, you know, connecting with people who are like-minded, who have disabilities and who love the outdoor.
Or want to get into the outdoors? Oh, that's
Timothy: great. And yeah, this podcast to me, somewhat of a therapy for me, and I appreciate that leader dogs allowed me to be a part of this because it gives me something to look forward to every week and other things that I'm doing for leader dog. And I feel like I'm giving back a little bit and hopefully my story and your story will inspire somebody and we could be a great [00:17:00] example of what you are capable of doing.
It doesn't have to define who you are. You can define your blindness and your, your visual impairment. And there is still, you still can have a good life, even though everyday our law, our eyesight is changing where you're capable of doing anything that you put your mind to.
Shannon: Yes, definitely. You have to adapt every single day.
Yes,
Christina: you do. And, you know, I want to thank you guys, both for being so vulnerable and sharing this story and myself, I didn't really know anything about the blindness community until I started working at leader dog. And so even on this podcast, I learned something new. Every time we record. And this one was so eyeopening for me.
I had tears in my eyes hearing about the things you guys have gone through. And I just, I want to know what are some things that you guys think that people [00:18:00] who aren't in this blindness community or who haven't gone through this, what are some things you think they don't understand, or some ways that they can help you during this?
Timothy: When I was young, it was just, I come from a different era. Most people I'm a little old, I'm 55 years old. And back then when I was in high school, it was rough. I mean, it was rough. I tried to play sports and people will make fun of their, Hey, you didn't see that blind man or, you know, they would call you names and it was terrible.
And just some compassion, understanding that, Hey, it could happen to anybody. I would just was born with this and it's in my genetic code. And you know, what it could have happened to you. And I wouldn't want to be treated like that. And, you know, Uh, do unto others as my motto and J they were just not educated back then, like they are now.
And, uh, life was really kinda, I blame that on society a little bit, but, uh, it was just a different time in [00:19:00] this country and in the history of the world and the effects you, even at my age, still today, I'm still sensitive about it. And it affected me during my job. People would say stuff and it would just give me so much.
But thank God. I was able to get through that. And, uh, later on, finally, the dog and leader dog has helped me out so
Shannon: much. Yeah. I would definitely echo what Timothy said. And I think too, um, you know, something that I just didn't realize about vision loss is just, you know, vision loss in general. Um, how it's gradual, how every day is so different and, um, it's really unstable.
Um, you know, Timothy. And I have very different, even though we have retinitis pigmentosa, we have, um, our, our vision has declined at different rates. And for me, I had a few years of being stable, um, of having stable vision. And now that my vision is unstable, it's like every single day [00:20:00] I have to relearn how to do something.
Um, so for example, I, um, I live in a pretty quiet neighborhood and would feel comfortable walking around without my cane and just walking my dogs without my cane. But, um, over the last few months, um, Over the last year I've realized, okay, I do not feel comfortable anymore. I need to use my white cane. And so then, you know, I'm going back and forth in my head.
Oh, what are my neighbors going to think? Do they, did they think that I was always blind or are they going to be worried about me? Are they going to say, oh, there's that blind girl again, walking her dog. I hope she doesn't get hit by a car. You know, I always. Worried about what other people would think when they saw my white cane, even as a kid.
Um, that's why I never liked using my white cane because it labeled me as different. And I always felt like people looking at me, um, staring at me, um, were staring with pity [00:21:00] and curiosity. It will pity and curiosity, you know, but it was always a different kind of stare. Then I get with, with Frazier. And so I really never liked using my white cane.
So in the last year I've had to use my white cane just in, you know, walking around my neighborhood. And that was the one freedom that I had where I felt like, you know, I was normal. I was just a woman walking her dog. Um, I wasn't different, but I realized. Well, here I am. I'm veering into the middle of the, um, the road or getting onto the other side of the sidewalk because I got distracted.
You know, my mind started to wander or, you know, I was daydreaming or I was looking off at something and here I am in the middle of the road and I'm like, okay, I need you to start using my white cane. So, you know, that's. That's a freedom of not using my white cane and just quote unquote, feeling normal just for a little bit, [00:22:00] um, that I had to grieve.
And I, I guess that's something that I just didn't realize was a part of vision loss. Was that constant grieving, um, of losing those, those freedoms, um, Um, of losing that sense of whatever normal is, you know, so like even too I think about, I used to be able to read 12 point font. Yeah. It's it was, it was hard, but now I look at a piece of paper and it's blank.
Is there even texts on that? I can't tell. Um, so like it's just a constant journey of adapting and. I would say, you know, it's, it's exhausting and it's always on our mind, you know, I, sometimes I get stuck, um, in even just, you know, work meetings where I'm like listening, but I'm also focused on, okay, what am I even seeing right now?
You know? Cause like that is so much of our, um, human nature is what we see. And [00:23:00] so then. Distracted thinking. Okay, what am I looking at right now is my vision different than it was yesterday. Um, and so I think, um, you know, definitely having compassion for people, um, who are blind and visually impaired, who are going through vision loss and just having compassion in general for, for anybody and treating people how you'd want to be treated.
Um, and also just having an open ear and listening, you know, I think is a very big thing that people can do. Um, because. It's it's, it's very, um, uh, it's like awakening, like a weight is getting lifted off your shoulders when you're able to talk to somebody about this. Um, and it's not just in your head, you can talk to somebody about it.
So just, you know, as I said, just being a listener to somebody and being supportive and saying, you know, supportive things is definitely something somebody could.
Leslie: I think, you know, the story that you two are both sharing right [00:24:00] now is something that we don't hear often enough. It's just the real impact of vision loss and how it affects your daily life every single day, every single moment.
Um, and having people start to understand that, like you guys have both mentioned your vision is very different from each other and from day to day in your own life. Uh, vision. We say that all the time on here is tricky. Um, and I think you guys have both really mentioned, uh, kind of that grief of vision loss and Shannon.
I think it was amazing that you mentioned, um, you know, getting through college and high school, you just told yourself, this is it right. Like I can, I can handle the amount of vision loss that I have right now. It will never change. And then once it started to change having to cope with all of that again.
So one thing I want people or listeners to take away from this conversation that you two have had is. That it's a constant grieving process. Um, and you're constantly going through those different stages of grief and, and the anger and the depression and the acceptance and the shock. And, and it's a skill and [00:25:00] people move up and down that scale all the time and throughout life.
But, um, you guys have incredible stories. You guys are incredibly strong individuals and out there advocating for blindness and low vision, um, and educating people. I just think it's amazing, but I'm curious, um, What are, would you say are the biggest things that get you through those times? So when you're having those challenging points in your life where you're realizing, okay, my vision has decreased again, and I kind of have to relearn things and reevaluate how I'm going to do things.
What are some of the, the biggest, um, helpful things during those times?
Timothy: Well, for me, I know leader dogs behind me. I know that I can go back to leader dog and get the cane skills. Because you're constantly every day using those skills. And when my vision is getting worse and worse and worse, yes, I've got glacier, but one day there'll be a day that glacier not feeling well or glacier, can't go on this trip or glacier, can't go.[00:26:00]
And I've got to have those cane skills. So as I'm, my eyes are getting different. I know that leader dog has got my back that's comforting and that they really genuinely care about me. And it just, just having that, it's a little security. But to get to every day you just got to do it. There's no other answers you just got to get through your life.
This is what my life is going to be. Like. I need to accept it and let's
Shannon: go on. Yeah, I would say, um, just knowing that I can go back to leader, dog two is definitely the biggest thing that gets me through my day. You know, um, a leader dog is definitely my second home. I feel like I've gone through so much growth, um, through all of those three programs that I attended.
And I just really love everybody, a leader, dogs just everyone's so genuine and welcoming and warm and you know, I, um, I can just reach out to anyone and be like, Hey, I. I need some help and you'll follow through. Um, so just knowing that I [00:27:00] can go back to leader. Dog is definitely a big thing. And, um, I think too, just connecting with people through, um, you know, Facebook support groups and, um, my, my friends who I've met throughout all of those programs that I attended and, um, just.
Continuing to, to, um, further our relationships, I think is really important for me. I really like just meeting new people who are blind and low vision, um, and talking to, you know, the people that I have known in the past. Um, and yeah, just like Timothy said, I mean, you just kind of have to accept it and go, just live your life as best you can.
Um, So I think, yeah, just accepted and move on and know that, you know, you have a support group behind you, I think is the biggest thing. Well, thank
Leslie: you both so much for sharing your stories and your experience and being [00:28:00] vulnerable here with us. I hope this message got out loud and clear that you can do it and vision loss and living with vision loss.
There's just different ways to do things. And it is a journey and there's highs and there's lows, but you two are an incredible inspiration to people out there. And I hope listeners have a better understanding of what it's like to live with vision loss. So I really, really appreciate you guys sharing your story.
Thank you, everyone for listening and taking the time to join us for the taking the lead podcast. I'm Leslie Hoskins with host Timothy Cuneo and Christina Hapner. We hope you enjoyed learning about the journey of vision loss, and please join us next week as we continue to dive into the world of blindness.
Yes. And I want
Christina: to share one more time. Um, Shannon's website, in case you want to learn more about her journey or her experiences navigating nature. It is the blind naturalist. So you can read her blog there and you can also reach us if you have any ideas or questions at taking the lead at leader, [00:29:00] dog.org.
And if you like today's podcast, make sure that you're hitting subscribe and check us out. Wherever podcasts DRI .