"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 99
Rebecca was used to handling things on her own, but vision loss brought anger, frustration, and challenges she hadn't expected. Over time, she found a different way forward, making room for the hard days, accepting help, and finding people who understood.
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Episode 98
As her vision changed, Martha worried her world might start getting smaller. But a trip reminded her that she didn't have to give up the things she loved. Turns out, asking for a little help can take you a long way.
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Episode 97
Vision loss doesn't always happen all at once. For Kara, it keeps changing, which means she's constantly figuring out what she can and can't do. Hear how she's learning to adjust, deal with the frustrations, and take each day as it comes.
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Episode 96
For Carolyn, connecting with people has always come naturally. When vision loss made it harder to recognize faces, she worried about missing those everyday connections. Hear how speaking up about her vision helped others understand what she needed.
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Episode 95
A close call on a walk changed the way Lance thinks about living with vision loss. It reminded him to stay open, keep learning, and keep moving forward.
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Episode 94
For Dottie, losing her vision meant giving up many things, and there was one farewell that hit especially hard. But after making a difficult choice to let go of something she loved, Dottie found a new perspective on what she had lost—and gained.
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Episode 93
Linda always imagined retirement would mean doing the volunteer work she loved, but after losing her eyesight, she thought that chapter of her life was over. Then one memorable hospital visit reminded her she still had exactly what people needed.
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Episode 92
As Mary's vision worsened, the life she'd always known began slipping out of reach. She wasn't sure where to turn or what might help. But a chance meeting changed things for her in ways she now hopes to pass on.
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Episode 91
When Susan began losing vision, she grew fearful about the future. But she found a source of hope and courage.
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Episode 90
Early in her journey with vision loss, Char was bitter and angry at the world. But one day, a heartfelt conversation helped her turn a corner and, as she put it, "look at vision loss through different eyes."
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Episode 89
The impact vision loss had on Todd's life was profound. Through cycles of anger and depression, he often took it out on those who cared most about him. Then he started channeling those emotions into a new activity, and that made all the difference for him and his family.
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Episode 88
When Pat was diagnosed with an inherited retinal disease, her doctor told her she wouldn't go completely blind, but her life would change forever. And while it's been a hard road, she's found some things along the way that help.
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