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 podcast@HadleyHelps.org.
When the scenario Leighann had feared for years finally happened and glaucoma took much of her vision, it hit her hard. But her desire to keep living meant challenging herself—even when it scared her.
Michael's vision loss led him down a long, uncomfortable road, discovering what he had to let go of and what he could still hold on to for his future. He continues to challenge himself to try new things.
Tamisue's eyesight has diminished to the point where she feels stuck between two worlds—not enough vision to function as she once did, but not fully blind. She fears her world going completely dark. However, an addition to her life has made a tremendous difference for both her and her family.
The loss Tom feels regarding his vision is complicated because it is ongoing. Acceptance has not come easy. Through the years, though, he has come to approach life a bit differently.
Anne's declining vision had her feeling down and sorry for herself. But two gifts—one she gave and one she received—helped turn things around for her.
Glaucoma advanced to the point where Ron found it too difficult to do the volunteer work he loved in retirement. Still, he found a way to pull himself out of the hole he felt he was in and continue to give back.
Diabetic retinopathy has taken more and more of Charles's vision. To cope, he is learning new approaches to life AND leaning into areas of passion that don't rely on sight.
Bruce's vision had been decreasing for years. When it reached the point where he was tripping over objects and bumping into people, he felt embarrassed and kept his vision loss a secret. His wife convinced him to try something new.
Marie grieved the loss of her vision, and still does. Yet, on a sunny August morning, she came to a realization that made all the difference in the world.
Terry's doctor told him, "There's nothing more we can do. You'll never drive again," and he was distraught. Then he recalled his military days as a Marine and sailor, and that got him through.
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.
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.