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.
Marc: This is Hadley’s Insights and Sound Bites, where people facing vision loss share 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.
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].
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