"It's not just happening to me"
As Patricia's vision changed, doing things on her own became harder, and at times she felt like no one really understood. Connecting with others going through many of the same things helped her feel less alone and more like herself again.
Hadley
“It’s not just happening to me”
Patricia: I couldn't recognize people's faces. That had always been a problem. Sometimes it feels like I'm the only one. I'm in this world all by myself.
Marc: This is Hadley’s Insights and Sound Bites, where people facing vision loss share what has helped them cope and adjust.
Patricia: I'm Patricia Gunter. I'm in Valencia, California. I have retinitis pigmentosa, newly diagnosed with cataracts. They've gotten very thick and out of control, so I'm looking at cataract surgery.
I was told as a child growing up, from 12 on up, that I was nearsighted. That's all I ever knew. I didn't know anything about being legally blind until I became an adult. And so here now I'm looking at cataract surgery and hoping for the best.
I couldn't recognize people's faces. That had always been a problem. Even my children, my responses, just their voices is what I would listen for, but I didn't know I couldn't see. Recently, I made a move back in November, and before I moved, I noticed someone knocked on my door, I opened the door, and I didn't see anyone. And I didn't think I had lost my vision at that time, but I think it was happening then. And just even now, I just have issues even visually seeing things in front of me.
It's really scary. And it's like I'm in a tunnel. I feel like I'm closed in like claustrophobic and I'm afraid to be alone in public, to travel, because I was independently traveling on buses and dollar ride, things like that.
Sometimes it feels like I'm the only one. I'm in this world all by myself.
I think by calling Hadley being in a group with other people that are dealing with the same issues with the vision loss, just being around other people with like conditions helped me to get through my situation because hearing other people's stories, I know, "Oh, I'm not the only one." It's not just happening to me.
And know that I'm still a person in spite of my blindness and that I still have a life to live and just hearing other people's stories and how they're adjusting to the blindness and it's like, "Okay, come on now, it's okay. You still alive, you still can meet people that I can smile, I can sing, I can dance, I can do ... " Those things, I don't have to feel sad and alone anymore. I just feel very glad that I found out about the groups.
Just knowing that people care about you in spite of your blindness, that you're still a person, I heard that in the group and they have people that I talk to on the phone and they make me feel like I'm a person, that they need me, like I need them.
It just helped me.
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 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.
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Episode 40
Having to give up the car keys was traumatic for Eugenia. She worried about becoming isolated until she found a new way.
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Join live discussions Live and lively discussions on technology, cooking, and more, all geared toward the community of people living with vision loss.
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