"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 83
Scott went to multiple specialists in search of a cure for his eye disease. He would often sit and just think about going blind. But one day a son's random comment took his mind off of everything and reconnected the family.
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Episode 82
When Elizabeth lost her vision in an auto accident, she went into survival mode. As she began to rebuild her life, she found certain connections and activities helped her focus less on her limitations and more on a renewed sense of purpose.
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Episode 81
When Eddie lost a fair amount of vision, she was scared and didn’t know how she was going to cope. But she found a source of strength and inspiration.
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Episode 80
As Kenneth lost most of his sight to glaucoma, he was feeling increasingly isolated and alone. Then he made a commitment, forcing himself to find ways to stay connected to the rest of the world.
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Episode 79
When Carol Lee was diagnosed with age-related macular degeneration, she was angry and frustrated. Over time, resentment began to fade a bit and the shock wore off. Gradually, her perspective started to shift.
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Episode 78
When Cliff unexpectedly lost a fair amount of his sight, he felt overwhelmed. But with time, he found a way forward.
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Episode 77
Thomas is experiencing many challenges of late, including vision loss. He finds inspiration and hope knowing he's not alone.
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Episode 76
Nikki has lost her vision due to a rare autoimmune disease. While she appreciates positive bits of advice and encouragement, she also stays grounded in the struggles she's facing and knows others do, too. She's feeling the loss.
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Episode 75
When a favorite hobby became more difficult for Dianne due to glaucoma, she learned to tap into something else. It turned out to be the ideal thing.
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Episode 74
Peter's sight slowly but steadily worsened over the course of several years. When he had to give up driving, his self-image took a hit. Working through his emotions has helped him cope and adjust.
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Episode 73
Sherry's vision loss has been gradual yet relentless. Asking for help to do things she used to be able to do on her own is a challenge for her, as it is for many. But she's finding some new tools and new ways to do things.
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Episode 72
Carolyn lost much of her vision after several glaucoma surgeries, leaving her feeling angry and discouraged. But a familiar childhood story inspired her to keep trying, even when tasks seemed impossible.