"It's a part of me now"
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.
Hadley
It’s a part of me now
Jayne: With vision loss, so often I spend so much of my day trying to force myself to see things I can't see. And I stress out about it and I just shut down.
Marc: This is Hadley’s Insights and Sound Bites, where people facing vision loss share what has helped them cope and adjust.
Jayne: My name is Jayne Surrena and I'm from Philadelphia.
I went to school for painting and got my masters in art education. I had been painting and showing my arts since I was 20 and working nonprofits and teaching.
I have retinal dystrophy. I didn't realize I had an issue until I guess the beginning of the pandemic. I honestly thought everyone saw the same way I did my entire life.
So I went to a different eye doctor. They're like, there's nothing we can do. This is normal, it usually happens when you're older. We can't do anything about it.
I felt so in the dark about everything and just very isolated. I would go online and just try to look up the terms that they were using because I still feel, I guess, very vulnerable about it.
With vision loss, so often I spend so much of my day trying to force myself to see things I can't see, like trying to focus on something that's blurry or not there anymore.
And it I get anxiety and I stress out about it and I just shut down. And because it's never gonna come back, it's never gonna come into focus.
But the one positive of everything is with my artwork. The fact that I can't see every imperfection and mistake in my artwork anymore, I have so much more freedom. And instead of spending like hours trying to make everything meticulous, I'm going through pages and using colors for the first time. And creating images that are just actually from like inside of me and like from emotion, instead of trying to remember technical skills that I was taught in school years ago like…I'm enjoying myself for the first time.
And like I'm actually smile, I feel like myself smiling as I work. And like I step back and like yes. And it it's there because I'm not focused on any details. It's just the overall piece that is…
I just feel like it's a part of me now.
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 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 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.