"My phantom vision"
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.
Hadley
My phantom vision
Presented by Douglas Walker
Carmel: I was losing slowly my vision. I thought perhaps my brain was just doing what their non-existent limb seemed to be doing.
Douglas: Hello, and welcome to Hadley’s Insights and Sound Bites podcast, where people facing vision loss share insights about what has helped them cope and adjust.
Carmel: My name is Carmel Anderson from Chicago, Illinois. It's early morning in Chicago, and I just listened to one of the podcast about Charles Bonnet syndrome.
I have lived at supported living places I lived with multiple disabled people, a couple of whom had or were all amputees. I had heard the stories of many amputees who would at times at the 20 years of not having a limb reach down to scratch, a thought that hadn't been there for 20 years.
I never had Charles Bonnet Syndrome at any time or noticed it intermingled within the vision that I had until I got and was diagnosed on the level of severe glaucoma.
I asked myself, is that what's happening to me? And my theory was because I was losing slowly my vision, and it will one day be completely gone. I thought perhaps my brain was just doing what their non-existent limb seemed to be doing.
I called it phantom vision. And this this is the first time I've ever known that it had a proper name, that it was a legitimate syndrome and a condition amongst visually impaired people.
But it seemed to me to make so much sense, and I would never have made that connection if I hadn't had the joy of seeing the courage of multiple disabled young adults. Thank you for letting me hear what I know as Charles Bonnet Syndrome, but which I will always fondly identify as my phantom vision.
Douglas: 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 56
When Emma lost her sight in just a few months, she struggled to cope. She felt alone, her insecurities grew, and self-esteem plummeted. With time, she came to a new understanding and that helped her tremendously.
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Episode 55
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.
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Episode 54
When Albert's vision decreased to the point that he could no longer read print anymore, he found it stressful. But he's found a new source of comfort that helps him quite a bit.
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Episode 53
Jayne can feel isolated living with her eye disease, spending much of her days forcing herself to focus on things that have become blurry. The stress can be overwhelming, causing her to shut down. But there's one area of life that now brings her more joy than ever before.
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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 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.