"I needed to share with people that I trusted"

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].