The Journey through Vision Loss: Finding a Voice, Support and Community Audio Project Transcript
Ali (00:01):
This is an audio image representation of a group of people who are going through this vision loss journey and talking about how they go about normal life and how vision loss is not defining them and that every single person can offer a lot to their families, to themselves, to the society.
Joyce (00:29):
There are so many resources out there. You could read books. There’s different kind of training. It’s endless, but really we learn best through stories and this is our collection of stories of how we’ve learned to live life with vision loss. We’re everyday people on world living everyday lives, we just live it a little differently. In many ways, that’s the beauty of blindness, is we’re not limited by what we see. We see so much deeper and with so much more dimension than when you’re limited by sight. Hoping that that is the message that comes across through these stories. And our hope is that maybe it would inspire someone to take the next step.
Dean (01:10):
So I was wounded in Vietnam by a hand grenade that blew up about two and a half feet in front of me. And I just had time to turn my head down. So I have a plate in the top of my head. It took both my eyes out through there.
Bing (01:24):
My vision, I’ve been wearing glasses since I was two. I was also diagnosed with retinitis pigmentosa just a few years ago. My vision dramatically deteriorated.
Janell (01:40):
Well, I was diagnosed at nine with the juvenile form of macular degeneration, and I had pretty usable site up until about 10 years ago. And I actually taught special education for 15 years. Loved it. And so now I just have light perception.
Bill (01:59):
About 55, I hit the tipping point where it was really obvious to me that I had some significant problems and I had to do things like quit driving and I couldn’t read anymore.
Yvette (02:13):
I noticed kind of weird vision quirks that I had, but the doctors misdiagnosed it. And so I didn’t actually know that I had a genetic eye disease until I was well into my 30s. So it’s kind of still all new in trying to adjust to it.
Doris (02:28):
I have the eye condition called retinopathy of prematurity. So that means I was two pounds, and then also I was two months early. So I was put in a incubator for oxygen for survival. And then at that time in the 1950’s, the doctors did not know that the oxygen damages a baby’s retinas. So at six months old, they determined that I had only a little bit of sight in my right eye.
Lisa (03:08):
I have X-Linked RP. I have a 50% expression of it. And I was diagnosed at 22 years old. And in my family, there are 16 of us that are diagnosed with X-Linked RP, both males and females, over five generations.
Ed (03:27):
I’m an attorney, I’m a teacher, I’m a gardener, I’m a jam band fan. I have a seeing eye dog and I have retinitis pigmentosa. I was diagnosed with RP back in the mid 1960s. I was five or six years old. So I’ve been navigating through slow vision loss for 50, 55 years now. It’s accelerated in recent years.
Carrie (03:54):
I lost my central vision first. So it was a little bit atypical. And then over time it began to kind of spread out towards my peripheral vision. And now I just have what I call a thumb print of vision left.
Fang Fang (04:16):
About my vision condition, I have a type of RP actually, and I was diagnosed about four years ago. It came to me out the blue when I was visiting optometrist to get a pair of new glasses. And he said, I’m afraid you have something else. And from there I visited about six other doctors and finally diagnosed my condition. And since then, my central vision diminished really fast. My central vision on my right eye right now is really blurry. And I have a little patch on my left eye I can see a little clear, but most of it is very blurry. So it has been really hard for me because it’s a rapid decline in my mind.
Colleen (05:05):
I have retinitis pigmentosa or cone-rod dystrophy. I’ve had it for about 12 years. It came on very late in life. And now they’re thinking it’s mostly cone-rod dystrophy without the retinitis pigmentosa, but they’re still not sure. I also have some look and feel of glaucoma. So I have to take some medication for the pressure in my eyes, but they’re also not calling it glaucoma.
Debi (05:37):
I was born sighted and I went into the Air Force when I was 18. And after about four years, I started not being able to see as well and couldn’t get my driver’s license. So long story short, I was medically retired from the Air force. And over the years, my vision deteriorated to the point where I’m totally blind now.
Cathy (06:05):
It was pretty debilitating, to be honest, to not only find out that I have a vision condition or vision disease, but to also find out that this particular disease, which is called retinitis pigmentosa, might eventually lead to total blindness.
MaryEllen (06:27):
It was a beautiful sunny day and he was being transported out of the ICU. And he asks me at noontime why it was so dark outside. And I said, “Well, it isn’t. The sun is shining. The sky is blue.” They did a series of tests and discovered that my husband had, during this whole heart attack event, had had a stroke to his optic nerves and the nerves were severed and there was nothing they could do. He was totally blind. And so our life just turned dramatically in ways that I cannot even describe. But through it, all my husband is a rock and he just moved forward. From then on Terry embraced technology and just viewed this whole thing as just another part of life. While I still grieve to this day and I think he does too, we move forward and it’s just been a real interesting change of course.
Terry (07:27):
Being a Vietnam veteran, I was exposed to Agent Orange and Agent Orange has been identified to cause a heart problems. So I actually had a heart attack that left me in a coma for six weeks. When I came out of the coma, I was blind. I had pumps installed in my abdomen. And then four months later I had a heart transplant. I guess I could say I was fortunate because I was emerged into the blind community automatically, just instantly, right? Because I lost my vision pretty much overnight. And so I was immersed into accessibility, so I’ve been a JAWS user for 18 years. So anytime you’re immersed into a new language or new learning technique, you pick it up fairly easy. So I’m fairly competent with JAWS and using virtual type of training. So I do a fairly good job of training individuals who need help. And my only requirement from that person is they have to be willing to ask me what help they needed and then actually practice what I preach to them.
Bill (08:37):
I felt like I was alone. I didn’t know what to do. And I just… I really, I felt like I was the first person in the world who had ever been blind and just I won’t say I was depressed, but I was pretty discouraged. So I just started to reach out, just kind of almost randomly to people. And I was able to network with people, find some people and get some help, some support, etc.
Doris (09:01):
For myself at this time, since I only have a light perception, I’m still continued to do the everyday activities around the house, like gardening and cooking and housekeeping.
Janell (09:17):
Then I wanted to go to college, of course. And mom’s thinking, I don’t know how she’s going to do it. And my dad’s, yeah, she can do it. Special ed, special ed and VOC rehab she can do it. And yes, my dad has always been the biggest supporter and we listened to Bruin games together and he’s the first one I call when something good happens and he’s super proud of me. So I’m very grateful for his support. Definitely, when my kids were born because I had a bargain with God and I said, please let me keep enough vision to see my kids. And he did.
Colleen (09:58):
Well, I think the biggest influencers for me were my mom and dad. They started me off in the right direction. The pieces of advice they would always give me or the pieces of advice I took in were really stepping forward, stepping forward into your life, stepping forward into new things that look really hard. And even if they look hard, do them anyway. I am so grateful for my husband who made this transition really easy. I said to him, one day, are you embarrassed that I have a white cane? And he said, “no,” really shocked, “Why would I be that has nothing to do with our marriage or who you are or who I am.”
Rick (10:44):
I wanted to be the best blind person I can. So I started up calls through the VA and computers, eye device and GPS, not because I knew everything because I wanted to learn more. No challenge is too tough for me. If I can’t do it, I’ll find a way to do it. Scuba diving in Australia. That was about seven years ago. Well, I’ve ski, golf, surf done a lot of stuff that most blind people don’t do. I said sure why not? So I learned how to scuba dive and got my certification. And everybody, I scuba dive with their dream of scuba diving, the great barrier reef. So I went to Australia with my guide dog for seven weeks and scuba dive the great barrier reef.
Ed (11:30):
I have achieved. Many of the goals I’ve set for myself. Setting goals is a lifelong process, attaining goals, reaching goals and setting goals just never seems to stop.
Arman (11:42):
Yeah, I mean, they’ve never known him in the sort of pre-accepting phase, right? Where he was… As long as they’ve known him, he’s used cane. He’s sort of talked about it more openly. He’s been in groups with people to not see it necessarily as just this thing he had to hide and sort of make, not an issue into something where it was an opportunity to educate others about what he’s going through and what it’s like and how we can be supportive and how there’s not necessarily anything lost with losing your vision. If you are able to sort of embrace, I don’t know, embrace is not the right word, but you know, kind of come to terms and find the support to redefine yourself as not being focused around that vision.
Arman (12:31):
And I think my dad has really done that. So my kids have definitely seen him more as someone who doesn’t see well, and I don’t think they expect that or find that to be a problem. It’s very different actually than how it was When I was a kid. Obviously his vision is much worse now, but it’s also… It’s a little more central, but not in a bad way and much about it in a positive way.
Ali (12:50):
I hadn’t really thought about that. But now that you asked, I can say that, yes, I had been in a denial for a long time, so I didn’t use the cane way past the time I should have started. The other reason I didn’t do it is because of just all of a sudden people seeing me with a cane at work, or that they hadn’t seen me for a number of years and they pity me or wonder what happened all of a sudden. I thought for two reasons, I thought one was, I was well enough. The cane is only when you need it. So even when I started using it, I only used it in the busy places and dark places.
Ali (13:32):
The other reason I’m lucky or I considering myself lucky is my vision stayed fairly sufficient to do all of these things and studying, going through school and going into the field I wanted as opposed to changing it because of thinking what happens if I go blind. So I decided to switch after a year of my field, to civil engineering. Anyway, so this vision thing didn’t stop me from all my goals and kind of came through, I guess, even though I don’t think we talked about that to my son, but it must have come through somehow that he saw that.
Fang Fang (14:13):
Yeah, it’s good question. At the beginning, it was really hard. I remember crying a lot. It was my boyfriend at the time, but I think family is the cornerstone of my journey. He proposed to me like two or three months later after the diagnosis. And then from there we built a family. I already had my daughter she’s about a year old by the time I had to leave the company. So since then staying home was actually a blessing. Having a little one, you see her change all the time. Then you see anything, you teach her, she can learn really fast and she needs me around. So I felt actually the transition was a blessing.
Yvette (14:52):
So I don’t think there’s anything that it’s going to stop me from doing. I think I’ll have to put in more effort and have a little bit more determination to learn new skills so that I can keep doing them, but it kind of feels like the technology that has been there that I wasn’t aware of. And then the new technology that’s coming out. It’s really exciting about the things that you can do that I just kind of crossed off in my mind. But it’s also given me a strength and a determination to kind of want to be a good role model for my daughter in a different way, because whatever, whether she has this eye disease too or not, I want her to kind of see whatever you have to go through in life. You can kind of roll with it and it doesn’t have to stop you from being the person you are or to change you into being resentful at life or anything like that. I have made honestly the best and closest, and I think most genuine friends that I’ve ever had through learning how to ask for help. And it’s still hard and it’s humbling, but it’s been amazing just seeing how people are so willing and actually excited to help.
Lisa (15:38):
And after my diagnosis, I did two and a half years of training on listening skills, which I think has really made so much more possible in my life. My favorite thing to do is work with families who have just had a child that’s diagnosed with a blinding retinal degenerative disease. So I feel like I can find the optimism and the diagnosis and I can help them not just cope, but thrive.
Prasuna (16:30):
I teared up. When she mentioned that like, she feels sad that how long she’ll be able to see her kids’ faces. That really shattered me and also it answered many of my questions that why she is not making an eye contact in the hallway. And why she never waved back to me, why you haven’t seen her in the break room at all. Also why she never joined in the weekly Friday lunches that we go to grow as a group in the restaurant. And also why she is not the front runner of this project, even though she’s the one managing it behind the scenes.
Joyce (17:19):
About a month into a new job, I found out that I was legally blind and I had to stop driving. And that’s when things really changed. I really tried to keep my blindness a secret work. My boss knew, and he was very supportive, but I didn’t really tell anybody else until I knew that it was safe. And I just remember thinking, okay, well, people don’t know because I didn’t tell them I wasn’t walking with the white cane. So I thought people didn’t know. And it just… I kind of remember that time, just feeling ashamed of being blind. A lot of years had passed since then and now I’m in a job where my blindness is actually an asset. I’m able to speak openly about being blind and explain the experiences of being blind. And so I just… It’s so freeing to be able to do that, but it really took a long time for me to even get there. It took me a long time to say that I was blind, but once I came to grips with that, I feel like a whole lot of doors started opening for me.
Carrie (18:34):
One of them it ended up being sort of a catalyst for me to share my vision loss at work. So I was keeping it a secret. I wasn’t using a cane or a dog. And I had a really, really large presentation. Presentation went really well. And after the team went to a happy hour and our CEO was at the happy hour, the CEO came up to me and said, “Hey, great job.” And he put his hand out and I was sitting down and typically I would always extend my hand first, just because I wouldn’t be able to see that other person’s hand. And I said, thank you but I didn’t realize his hand was out. And he had no idea I was very low vision and it was this 30 seconds of extreme awkwardness. And he said, “okay, have a good day” and walked away.
Carrie (19:27):
And as he walked away, I realized he’d been standing there with his handout. And so I remember going up to our, sort of, team lead after who knew that I was low vision. And I said, “did you tell him?” And he said, “yes.” And I said, “thank you.” And I ran across the street, back to the building to try to find this executive to apologize. I couldn’t find him, he was gone. And I just stood there thinking I can’t do this anymore. Like, I can’t keep this a secret and I can’t continue to make other people wonder, quote, what is wrong with me. So it was a challenging time, but it was also, it was a pivotal point in me realizing that I had to start doing things differently and be open about my disability.
Cathy (20:11):
For me. I feel I’ve learned about a lot of different tools and resources. I found out that there are services in groups that are out there that are willing to help, and they have the tools and resources that can help me make some adjustments. I know one of the things that I was able to do was I had an occupational therapist, actually came out to my house and helped me put bumps on my microwave, for example, and on my dishwasher so it’s easy to find some of the ways to use these items.
Debi (20:52):
I’m fortunate enough. I went to a school for the blind, through the VA. And so they gave me a lot of tools and also the skills to use those tools. So I learned cane travel and how to use adaptive technology with my computer. I had a label things, all the basic things you need to know when newly blinded. And so that was really helpful. And I’ve been back several times over the years. I help run an online community of blind people from all around the world where we host over 50 events per week. And they’re all hosted by other blind people. I also am in a consumer advocacy group where we advocate for blindness and legislation. And so I’m very involved in different committees there. I’m active on our transportation committee and for some hobbies, I love to hike and I love to do a sport called dragon boat racing.
Bing (21:50):
I am working as a vocational rehabilitation counselor. I work with a lot of people who don’t have a disability. I do have like an assistant who helps me with like filing, basic clerical things. But I think the primary reason I went into this field is I am a person with a disability. And I feel that I will be more empathetic to people who have a disability, because I believe that as much as people are able to, then we can help them get the job. I believe that people are able to work
Katie (22:33):
For me being blind. It’s a wonderful opportunity because I think they understand more. So I don’t get comments like, “Oh, you’re sighted. You have no idea what I’m talking about or what I’m going through.” Sometimes you know, that other people might get who are fully sighted and being a trainer. So they’re more open and more willing to learn and less resistant, I guess. So it puts me in a more favorable position, to be honest, it doesn’t impact it too much. I think it gives me a great sense, an opportunity to help clients like help emphasize with clients when they’re having a rough day or when they would like some techniques on doing something in general.
Katie (23:11):
Sometimes it could be tech related and sometimes it could be not tech-related even something like, how do you organize your shoes? Or how do you feel which one is the left shoe and the right shoe, right? Because before they relied on their vision or anything from how do you swap flies, right? Those kinds of questions I get asked a lot. And sometimes like for the last one, I do incorporate technology. So I explained to them the other day we had lots of ants because it’s been over a 100 degrees here. So I actually used the either Be My Eyes or Aira, either one, with a live volunteer. They can help you and as you’re spraying peppermint spray to kill the ants they can tell you, “that’s not moving anymore.” Or they kind of help aim where spider on the wall.
Dean (23:56):
I haven’t let blindness slow me down much at all, other than not being able to hop in the car and take off by myself, I kind of used to do that somewhat but not anymore.
Rick (24:06):
When I enter a new environment, I’m totally focused on the sense of feel in my feet, my hearing and the different sounds. Like if I can hear a TV, I know what that is. And I can make angles off that TV or angles off door and maneuver through the house find a doorways. At my age at almost 70 years old, I can able to remember that just by the way, I’ve trained myself. It does take a lot of determination and training and working with it, but it can be done. I’ve taught a few people how I do it. I even had a guy who showed me how to use the air current at the VA, which you have air current, wherever you go. He was able to tell where open doors were just by the sound when he tap his cane or a footstep. If you make… If you have shoes that make noise, we just got to concentrate on that stuff and you will get good.
Rick (24:59):
Carpeting has a good edge to square yourself off, depending on which way you want to go. And just by listening to your feet, hit the wood floors. You know how close you are to a wall. And if there is an opening, you can hear that opening by listening. And then you just turn. I keep my hands down by my hips as like feelers, instead of the front of me up by my shoulders. Some people keep their hands above their head. And as you walk, you gradually pick your pace up. As you get to know different obstacles that you might bump into are reference points. You get to learn that. And then you know to go around it and take a sharp left, you get to the door, you go outside after doing it so long, you build up your confidence. And when you know you’re doing what you want to do, right yes, it does build your confidence. Well, that’s where my runners come in and they might only be six foot runners or 10 foot.
Rick (25:51):
I’ve got one 10 foot. I got a carpet in front of my sink and in front of my stove. So when you zip across a kitchen with something hot or something you don’t want to spill, when you hit that Jeanette carpet, the sink is there or the stove is there to get the fire out.
Lisa (26:06):
We have adopted a little girl she’s from India. She has the children’s version of RP known as LCA, Leber congenital amaurosis. And she came home to us at five years old. And she had no usable vision by six months old.
Ali (26:23):
Have you decided what you would like to do after you graduate from school?
Ana Reshma (26:30):
Get a guide dog and bring it here.
Ali (26:30):
Okay.
Ana Reshma (26:34):
And I love to clean the floor myself.
Lisa (26:37):
You like to clean the floor yourself?
Ana Reshma (26:40):
I do!
Lisa (26:40):
Yeah, I think she is just looking forward to being more and more independent each day.
Ana Reshma (26:44):
I have to vacuum all the floor up. It’s not mine. It’s not my dad’s job to do it, it’s my job!
Lisa (26:50):
Yes, we’re try to teach her that there’s a lot of things that mom and dad do that she’s not even really aware of. And so we’re trying to hand things more over to her.
Ana Reshma (26:58):
So can I vacuum the floor up myself?
Lisa (27:00):
You don’t have to ask them for permission.
Ali (27:04):
So when do you expect to get a guide dog?
Ana Reshma (27:08):
Maybe 18, I guess?
Lisa (27:11):
Yeah, probably. We’ve told her probably when she is 18. But before we get a guide dog, what has to happen?
Ana Reshma (27:16):
Independence. Vacuum, that’s practice we’ve got to get to get out house that’s…
Lisa (27:20):
Yes, you have to be prepared. You have to be very good with your cane skills to get a guide dog.
Ana Reshma (27:23):
So then can I practice that?
Lisa (27:25):
Yes, it’s hard to practice right now during COVID-19 and we have all this smoke issues going on with the Northern California fires. So we not allowed outside, even at the moment.
Ali (27:36):
What technology do you use to read your books and do your homework? Do you use braille? Do you use audible books?
Ana Reshma (27:53):
I use braille notes touch but I don’t know how to use it.
Lisa (27:53):
Yeah, she’s still learning how to use braille notes touch. So my husband has had to learn the device and we have to work with a private tutor as well as with the school in order to try and accomplish her homework. So that’s not been so easy. And then you’re also using what other device?
Ana Reshma (28:09):
IPad.
Lisa (28:11):
IPad. And you use it in conjunction with what?
Ana Reshma (28:12):
Voiceover.
Lisa (28:14):
With voiceover but we’re still learning that too. So you have a QWERTY keyboard.
Ana Reshma (28:18):
Yeah.
Lisa (28:19):
What is on the keys?
Ana Reshma (28:20):
Stickers.
Lisa (28:22):
Stickers. And what are the stickers?
Ana Reshma (28:24):
For my braille, hands, thats…
Lisa (28:25):
Yeah, for braille, right? So, so she’s learned the QWERTY keyboard she can type with about 92% accuracy, which is great, but she types it slowly.
Ali (28:36):
Wow! That’s good.
Lisa (28:36):
Sometimes I have to correct her because she can’t see the screen to know what she’s typed.
Lisa (28:42):
So I have to, or my husband has to tell her if she’s made three spaces and there’s three spaces there, or that word was misspelled wrong. It does say back to her what the words are and it will read it as a sentence, but those individual mistakes are hard for her to pick up. And that, part’s a real struggle. You also know how to read…
Ana Reshma (29:08):
Braille and recipes.
Lisa (29:09):
And recipes for your cooking class, right?
Ana Reshma (29:12):
So maybe I can make macaroni and cheese bites for myself for lunch.
Lisa (29:15):
Yes. She did a course with California school for the blind and did California, sorry, macaroni and cheese bites, right?
Ana Reshma (29:22):
For Mochi and mommy.
Lisa (29:23):
Yeah. Even the dog tasted them.
Ana Reshma (29:25):
And my dad came home last time and he had a mac and cheese bite too.
Lisa (29:28):
So yup, we got to share them with the whole family. What other things are you using? To learn math you’re using a…
Ana Reshma (29:36):
Abacus.
Lisa (29:36):
An Abacus and a talking calculator.
Ana Reshma (29:41):
Yeah.
Ali (29:41):
Thank You and it was nice talking to you.
Lisa (29:45):
For her learning and developing and growing has been much harder because sighted people don’t understand what she needs in order to do that. My job and my husband’s job has been to find all the open doors and when doors slam to keep finding new ones that are open or that we can open and to show the world, especially the sighted world, that this child can do it. We just need to find a way.
Dean (30:13):
At the VA hospital where I had my blind rehabilitation, really got me going and built up my independence and confidence and everything like that. One of the counselors while I was there, he’d been blind since birth. But anyway, he called me in his office one day and kind of interviewing me. And he said, “Dean do you ever get depressed and stuff? Can’t do this, can’t do that.” He said, “don’t ever blame it on the lack of sight. He said, just blame it on the lack of training.”
Bill (30:43):
The first thing a person who, most in any situation, no matter how you come to the point that you realize you’re blind, you’ve got to do what I call, get your head on straight. In other words, you’ve got to come to the point to that says, okay, I’m I am where I am, I might not like it, but I am where I am. And I can either sit here and pity myself or I can move forward and I can try to do all the things that I can do. I just tend to try to be a happy person. I feel you’ve got a choice and my choice is to be happy.
Doris (31:12):
I had a special ed teacher in high school. He would always call me and say to me, “okay, Doris, do you want to feel sorry for yourself? Or do you want to keep on moving forward and reaching your goal?” My advice is to always be positive and seek out help either through support groups, learning technology, or just wanting to be independent. And most of all, it’s okay to ask for help. I get for myself, maybe for others, too, people that are blind, do not like to ask for help, but I think it’s okay.
Terry (31:57):
You have to have a support group or you can cry on somebody’s shoulder when you need to do it. And then whoever shoulder you’re crying on, they said, that’s an enough. Let’s get it… Let’s get it solved. And let’s continue on with life.
Bing (32:09):
There is so many things you can do differently. So it’s not just one way you can do it some other way. And also for things that you’re not able to do to let it go.
Janell (32:22):
Connect with a support group, a DVR counselor, a low vision counselor. You have to know that you’re not alone in this journey. And get on the different social media like Skype. We all just trade stories and we laugh and you have to know that you’re not alone and just connect with different, different groups, different organizations. And again, have a sense of humor because it’s not always going to be pretty, but as long as you can laugh, you can move on to the next day.
Ed (33:00):
Embrace it, embrace your vision loss as just a part of your life. Turn it into a positive. Don’t be afraid of it. Don’t give up your control, your dominion over your life. Just embrace it, welcome it, and move forward. I think another lesson that is real important, which kind of came into focus in recent years is the importance of being mindful of what you’re doing, being present with what you’re doing, taking your time while you’re doing what you’re doing. I think in the context of vision loss especially, it’s really important to slow down a bit. And just as I said, be in the present
Carrie (33:42):
The friendships I’ve made actually through the journey of vision loss. So whether it’s this support group or many of the guide dog handlers that I’ve met really, really amazing friendship. Try to focus on what you love to do and the value you bring, right? And the things that make you happy in life and really find your new normal. Because there is life beyond blindness and you know, you can still do amazing things.
Rick (34:20):
The friendships that you make with the blind community, will last forever. They become closer to you than your immediate family, because you understand each other. Be careful on the goals that you set for yourself. Don’t set them too high, cause you’ll never reach them, set them just high enough where you reach them and then reset it. Like if you’re going out, walking in your neighborhood, just take it around the block. Get that down, add a block to it, then go a different direction. You always then back up at the place you started. And eventually you’ll have miles in between where you started and where you turn around to come back.
Yvette (35:01):
Someone said that being blind was the easiest disability to have. And that has stuck with me and hearing them describe it. It really shifted my perspective on it. And it made it kind of exciting to really think about the fact that I could do pretty much anything. That was huge for me and that sort of just changed my outlook on everything. So if you can find someone with some form of vision impairment that, that’s going to be the most valuable thing and that they can help guide you. And more than anything, help just make it feel manageable when it feels so overwhelming, At first.
Colleen (35:38):
First of all, I would say to really honor your sadness, your anger. And then after really acknowledging that pain and really, really knowing that it’s there, I would say to someone that there is a huge new adventure awaiting them. It’s just going to be different without sight. And without sight is very interesting because your body takes over some of the things that it didn’t do before, and it makes them more acute. And I think keeping on the high road. The road has rock, it has pebbles, but it’s still on the high road. You can have the life that you really want to lead. That’s been my experience.
Lisa (36:24):
I would say that most sighted individuals won’t necessarily believe in you and your ability to either complete certain tasks or to accomplish the big things in life, getting your degree, getting a job, starting your own business. So you have to really be strong in your own vision for yourself and use a lot of healthy communication, educate a lot, have patience with them and demonstrate the opposite that you can do it. So I think that’s probably the biggest thing because most things come from our ability to believe that they’re possible. Creativity is also, I think another thing that this diagnosis forces us to do, we have to look for ways to make things possible for ourselves and for our families.
Cathy (37:10):
I think the most important thing when you are going through a challenging disability, although I hate to call it a disability, it’s a situation, but I think anyone who’s going through a challenging experience, like many of us are, I think it’s most important to know that we’re not alone.
Cathy (37:28):
There are others that are dealing with the same frustrations, the same challenges, the same situations. And I think we found that not only are there frustrating experiences, but there are also some very funny experiences that we can all appreciate. It’s just so important to know that we’re not alone in this journey because it can be terribly isolating to feel like you’re going through something by yourself or that no one else is experiencing what you’re experiencing. So I just think it’s important to know that there are others out there willing to help, willing to share their experiences and just willing to help you find solutions for whatever you might be going through.
Debi (38:13):
You know, I’m thankful to be alive. Blindness is just one part of who I am and I still can live, stay connected with other blind people because it’s a community and you can get resources and help from each other, lean on each other. And it’s great to be a part of a community. Don’t stay on the sidelines, be involved.
Fang Fang (38:34):
Once you build a network of people who have a similar vision loss experience, it’s so much easier to imagine your future. And imagine, and also seeing the opportunities out there that you can also use.
Joyce (38:49):
No matter What your barrier is. There’s always fear in doing things that are new or different or out of your comfort zone with a lot of the young adults that I’ve mentored in the past. I would always tell them, “Well, why not? Why don’t you try that? You have nothing to lose.” And for after years of giving that advice, I started hearing that from myself and making myself take my own advice. Like, why not? What do I have to lose? That’s taken me into a lot of places that I never thought I’d be. And so I think that’s good advice.
Jillian (39:25):
Thank you for listening.
Fang Fang (39:27):
We’re on this journey together.
Jillian (39:31):
The journey through vision loss, finding a voice, support, and community. Produced by Jillian Oshita on behalf of LensDay, an independent resource group discovering the unique lens blindness brings to life. Music: “Long Calming Piano Background” by DS productions.