"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 71
Learning he would never see again was heartbreaking for Shannon. Embracing what challenged him, Shannon discovered strength in the unfamiliar.
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Episode 70
The week Jessica was diagnosed with an eye disease that would progressively impair her vision, she also found out she had cancer. A few things have helped her continue to feel strong and less isolated.
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Episode 69
Jack's vision has been declining for years. The hardest part for him is that it just keeps changing, so he needs to keep adapting. A routine Jack's wife put in place for the couple has helped him cope and adjust.
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Episode 68
Losing a fair amount of her vision brought with it a series of other losses for Dia. She began to feel depressed and very fearful. However, she gradually started giving herself pep talks and reconnecting with the things that bring her joy.
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Episode 67
Julia had always lived life on her own terms. So, when vision loss meant giving up her car keys, she used a white cane or her husband's arm to guide her steps, and kept going. Still, she noticed a change in how others treated her… until she made a decision she now calls, "the best thing I ever did."
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Episode 66
When the scenario Leighann had feared for years finally happened and glaucoma took much of her vision, it hit her hard. But her desire to keep living meant challenging herself—even when it scared her.
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Episode 65
Michael's vision loss led him down a long, uncomfortable road, discovering what he had to let go of and what he could still hold on to for his future. He continues to challenge himself to try new things.
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Episode 64
Tamisue's eyesight has diminished to the point where she feels stuck between two worlds—not enough vision to function as she once did, but not fully blind. She fears her world going completely dark. However, an addition to her life has made a tremendous difference for both her and her family.
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Episode 63
The loss Tom feels regarding his vision is complicated because it is ongoing. Acceptance has not come easy. Through the years, though, he has come to approach life a bit differently.
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Episode 62
Anne's declining vision had her feeling down and sorry for herself. But two gifts—one she gave and one she received—helped turn things around for her.
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Episode 61
Glaucoma advanced to the point where Ron found it too difficult to do the volunteer work he loved in retirement. Still, he found a way to pull himself out of the hole he felt he was in and continue to give back.
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Episode 60
Diabetic retinopathy has taken more and more of Charles's vision. To cope, he is learning new approaches to life AND leaning into areas of passion that don't rely on sight.