"You don't have to see it to feel it"
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.
Hadley
You don’t have to see it to feel it
David: RP is like a slow torture, you know. Because six months from now your vision plateaus, and you get comfortable with it, and one day you're watching TV, the next day you can't. And so it's kind of like a slow torture.
Marc: This is Hadley’s Insights and Sound Bites, where people facing vision loss share what has helped them cope and adjust.
David: My name is Dave Lehman, and I'm from Massachusetts.
Well, I'm 67 years old. I have retinitis pigmentosa, or RP. I'm married for 43 years. My wife and I have been together for 51 years, actually, we were childhood sweethearts.
With RP, you're slowly losing sight. RP is a slow torture, you know. If I had to find a word for it, it's a slow torture, because six months from now your vision plateaus, and you get comfortable with it, and one day you're able to drive, the next day can't. One day you're watching TV, the next day you can't. And so, it's kind of like a slow torture. And then, at the end of all that, the pot of gold at the end of the rainbow is, you get to go blind. And then from there, you either have to really challenge yourself or go down that rabbit hole.
Then it comes push to shove, you've got to pick up the cane, or get a dog, or things like that, and now, there's no more hiding it. You're out there for everybody to see, and it's a hard pill to swallow, but sooner or later, it's what you've got to do.
Things that get me going, or inspire me, it might sound funny, but I love sightseeing. I love history, and I love people or things that inspire me. I listen to books about explorers.
I'll give you an example, one time I was reading about the Civil War and everything like that, and I read this great story about Gettysburg, and it was just driving me crazy out in Pennsylvania, and I said to my wife, "We've just got to go. We just got to go.” And you know, I didn't know how much I was going to like it or anything like that, because visually, I wasn't going to see anything.
So, I get out there and stuff, and we're seeing all the sites and everything, and I actually got to stand in Lincoln's footsteps, where he gave the Gettysburg Address, and I mean, it totally gave me goosebumps. The more I think about it, it's like, "Wow, that's one of those wow moments," and you really didn't have to see it to feel it.
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 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.
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Episode 47
It was tough for Linda to give up driving and she was heartbroken when reading became difficult. She felt her world was shrinking. But then she asked for help.
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Episode 46
Ashia felt all alone in her vision loss. No one around her knew what she was going through. Then she found something that gave her hope.
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Episode 45
Dennis found that many aspects of life with vision loss can be a struggle. Then he found something that turned that around.
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Episode 44
Judy has lived with progressive vision loss for many years. She's found a way that helps her cope and adjust.
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Episode 43
For years Bill hid his vision loss from others. He was self-conscious about it. Then, he decided to open up.
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Episode 42
For Cynthia, every story shared helps her on her own journey with vision loss.
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Episode 41
Living with low vision meant Karen was constantly explaining to others what she can and can't see. Then she found a tool that has made a big difference.