"I needed to share with people that I trusted"
For Carolyn, connecting with people has always come naturally. When vision loss made it harder to recognize faces, she worried about missing those everyday connections. Hear how speaking up about her vision helped others understand what she needed.
Hadley
“I needed to share with people that I trusted”
Carolyn: You become vulnerable when you tell somebody about you. And you share with people you trust because you know how they're going to handle what you're going to give to them.
Marc: This is Hadley’s Insights and Sound Bites, where people facing vision loss share what has helped them cope and adjust.
Carolyn: Hi, this is Carolyn. I'm from the Kansas City area.
I have macular degeneration. I'm in the advanced stages, geographic atrophy. And it wasn't diagnosed until roughly 10 years ago, but without knowing what has happening to me, I've had it probably for 16 years.
When I went into a program for my granddaughter in the evening, like I got off work, I was still able to drive. And I went into the auditorium, and I couldn't find my family. And when they eventually came and got me and when I sat down, they all said, "We were just waving at you and waiting at you. Why didn't you come?" But I couldn't see anything. And I thought that was strange. Nobody else seemed to think it was strange, but I did. And I think that was the beginning.
So one day I went to a place with a friend of mine who had a coupon to get her eyes examined and she said, "You want to get yours examined?" And I went, "Ah, oh well, why not? " And that doctor told me I had macular degeneration. He freaked out and it kind of concerned me. So I went back to my own doctor and asked and he said, "Yeah, I do have macular degeneration." They just didn't tell me, which I thought was unusual, but that's how I first found out that I had it.
As your eyesight fails you, and when you can't see people's faces and you can't see their expressions, that's a lot of communication. You miss the cues, you know, the humor cues and things like that. In the beginning, you just don't want people to know. You just don't say anything. And now I do.
You become vulnerable when you tell somebody about you. And you share with people you trust because you know how they're going to handle what you're going to give to them. And I think what it took is that I needed to share that with people that I trusted with that information that they would try to understand how I was feeling and treat that vulnerability kindly. And then after you get a few experiences like that, then you build your confidence.
I did a lot of volunteer work when I could drive and get to places and I told a group, you know, I'm gregarious. I would be saying hi to everybody and really connecting and I said, "I can't see you all so you're going to see me before I can see you, please, please yell out at me or let me know you're there." And most people don't feel comfortable doing that or they forget. But one time I was sitting at church by myself like three rows back and someone sat next to me. I could just feel a presence and I looked over, probably cry. She was so sweet. She sat next to me, and she looked at me and she said, "I see you.”
And it made me cry. I just love her. And so now every time we see each other, if I see her first, I'll go sit by them, she'll look back at me and I go, "I see you." It's just a comforting little thing that we do.
So, you may not have success but just keep trying. Someone's going to hear you. I mean, it's not always a success and sometimes it can be disappointing but just keep trying because there are people out there that will hear you and feel you and want to be close to you and you're great. Just because you can't see doesn't mean you aren’t you. You're so funny and you're so interesting. People want to get to know you. You just got to figure out a way to make that happen.
Marc: You never know who might need to hear your story. If you’d like to share with us, just leave us a message on our Insights & Sound Bites voicemail. By calling, 847-512-4867. Or, you can use your smartphone or computer and email us a recording to [email protected].
All Episodes
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Episode 59
Bruce's vision had been decreasing for years. When it reached the point where he was tripping over objects and bumping into people, he felt embarrassed and kept his vision loss a secret. His wife convinced him to try something new.
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Episode 58
Marie grieved the loss of her vision, and still does. Yet, on a sunny August morning, she came to a realization that made all the difference in the world.
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Episode 57
Terry's doctor told him, "There's nothing more we can do. You'll never drive again," and he was distraught. Then he recalled his military days as a Marine and sailor, and that got him through.
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Episode 56
When Emma lost her sight in just a few months, she struggled to cope. She felt alone, her insecurities grew, and self-esteem plummeted. With time, she came to a new understanding and that helped her tremendously.
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Episode 55
Dave calls his experience with vision loss a slow torture. In the face of this, however, he has found a sense of inspiration in explorers, history, and an activity you wouldn't typically connect with vision loss, sightseeing.
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Episode 54
When Albert's vision decreased to the point that he could no longer read print anymore, he found it stressful. But he's found a new source of comfort that helps him quite a bit.
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Episode 53
Jayne can feel isolated living with her eye disease, spending much of her days forcing herself to focus on things that have become blurry. The stress can be overwhelming, causing her to shut down. But there's one area of life that now brings her more joy than ever before.
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Episode 52
When Jeffry lost his sight, he felt a loss of control, a loss of dignity. Then, he began his long road to empowerment, one small goal at a time.
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Episode 51
Marilyn went through bouts of anxiety and depression with her vision loss and still grieves the loss several years into her journey. She also decided to do something for herself which has helped tremendously.
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Episode 50
Learning to live with vision loss wasn't always easy for Pam. But with time, her bad days are fewer.
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Episode 49
Jennifer didn't know what to do or who to go to for help as her vision was fading. Then, by chance, she found some help. She found some direction.
The book referenced in this episode is "Macular Degeneration: The Complete Guide to Saving and Maximizing Your Sight"
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Episode 48
When Carmel heard a Hadley podcast, it helped her understand what had been happening to her along with her vision loss—something she had nicknamed her "phantom vision."
Carmel mentions an episode of our sister podcast, Hadley Presents. Here's a link to that episode on Vision Loss and Charles Bonnet Syndrome.