"Makes me feel less isolated"
The week Jessica was diagnosed with an eye disease that would progressively impair her vision, she also found out she had cancer. A few things have helped her continue to feel strong and less isolated.
Hadley
Makes me feel less isolated
Jessica: Just hearing the experiences of other people, it makes me feel less isolated and that these experiences are not just mine, but they are pretty universal to the low vision community.
Marc: This is Hadley’s Insights and Sound Bites, where people facing vision loss share what has helped them cope and adjust.
Jessica: Hey, my name is Jessica Simmel and I am from New York, New York. I was diagnosed with retinitis pigmentosa in December of 2016. The same week I found out that I had breast cancer. And now, eight years later, sitting at my window birding and listening to some of these podcasts and realized that maybe I did have something to share.
Because listening to these stories, these sound bites are so validating. I have about eight degrees of vision left, probably a little less by now. And, it's hard. As you all know, and something that has brought me comfort this year, that has allowed me to really keep going is adaptive sports.
I'm 51 years old. I had stopped doing anything athletic due to arthritis in my wrists, my knees, my hip. And then I learned about an adaptive climbing group that was about 45 minutes away from where I live. And when I was sighted, I absolutely loved climbing, but I hadn't done it, probably since 16 years ago.
And it's been six months that I have been doing adaptive rock climbing, and I can say that it's truly changed my life. It just made me feel strong in my own body. And I hadn't felt that in a really, really long time.
The other thing that has helped me is listening to stories from other people. Just hearing the experiences of other people, it makes me feel less isolated and that these experiences are not just mine, but they are pretty universal to the low vision community.
So I hope this help and thank you all for helping me with your stories. Thank you.
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 57
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.
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Episode 56
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.
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Episode 55
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.
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Episode 54
When Albert's vision decreased to the point that he could no longer read print anymore, he found it stressful. But he's found a new source of comfort that helps him quite a bit.
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Episode 53
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.
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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.