"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 95
A close call on a walk changed the way Lance thinks about living with vision loss. It reminded him to stay open, keep learning, and keep moving forward.
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Episode 94
For Dottie, losing her vision meant giving up many things, and there was one farewell that hit especially hard. But after making a difficult choice to let go of something she loved, Dottie found a new perspective on what she had lost—and gained.
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Episode 93
Linda always imagined retirement would mean doing the volunteer work she loved, but after losing her eyesight, she thought that chapter of her life was over. Then one memorable hospital visit reminded her she still had exactly what people needed.
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Episode 92
As Mary's vision worsened, the life she'd always known began slipping out of reach. She wasn't sure where to turn or what might help. But a chance meeting changed things for her in ways she now hopes to pass on.
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Episode 91
When Susan began losing vision, she grew fearful about the future. But she found a source of hope and courage.
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Episode 90
Early in her journey with vision loss, Char was bitter and angry at the world. But one day, a heartfelt conversation helped her turn a corner and, as she put it, "look at vision loss through different eyes."
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Episode 89
The impact vision loss had on Todd's life was profound. Through cycles of anger and depression, he often took it out on those who cared most about him. Then he started channeling those emotions into a new activity, and that made all the difference for him and his family.
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Episode 88
When Pat was diagnosed with an inherited retinal disease, her doctor told her she wouldn't go completely blind, but her life would change forever. And while it's been a hard road, she's found some things along the way that help.
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Episode 87
Debbie has found a place near her that helps unleash her creative streak and her desire to give back to the community, a place where how much she can see doesn't matter.
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Episode 86
Doug was filled with uncertainty after realizing that the vision he lost was unlikely to be restored. His anxiety grew as the silver bullet he hoped for never materialized. But he did find things that helped him manage and continue to live his life with purpose.
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Episode 85
When Nancy's vision deteriorated to the point that it was challenging to navigate streets of a neighborhood she walked for decades, it was humbling. But a friend's comment surprised and inspired her. Her perspective started to shift.
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Episode 84
Macular degeneration was no stranger to Valerie, her mom had the condition. Early into her own diagnosis of AMD, treatments worked well and her vision remained stable. Over time, however, she noticed more significant changes, which became increasingly challenging both emotionally and physically. That's when she began to change her perspective, and that change made all the difference.