"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 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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Episode 39
This week, hear how rediscovering a favorite activity helped Celia find balance as she adjusts to vision loss.
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Episode 38
Denise can struggle with the slow but continuous loss of vision she's facing. But she's found a way to pick herself up on a bad day.
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Episode 37
Listen in as Vanessa shares what has helped keep her from feeling hopeless and defeated due to vision loss.
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Episode 36
Stacy shares with us how being honest about her vision loss with her friends and coworkers has made all the difference in the world.
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Episode 35
For many, having to give up the car keys due to vision loss is traumatic. Deb felt it too. Then, during a call to arrange transportation for herself, a new door opened.
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Episode 34
Listen in as Anne describes how a question posed to her shifted her perspective for living with vision loss.
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Episode 33
This week, William shares how learning to continue with his favorite hobby, even with vision loss, has been therapeutic—and uplifting. Here's the link to his website https://www.blindtruths.org/
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Episode 32
This week Angela shares how she struggled to get around due to vision loss, how she tried to hide it from others, and what helped her.