"I listen for the hope"
When Susan began losing vision, she grew fearful about the future. But she found a source of hope and courage.
Hadley
“I listen for the hope”
Susan: Sometimes the clarity is not there anymore or I'm losing color. And so, when that happens, I get scared and I worry.
Marc: This is Hadley’s Insights and Sound Bites, where people facing vision loss share what has helped them cope and adjust.
Susan: My name is Susan and I presently live in Florida, but we spent most of my life in upstate New York, which I miss dearly.
It was about 40 years ago and all of a sudden my eyes started bleeding. And my husband was a patient of the Retina Institute up in Boston. He called them, gave them my symptoms, and they kept somebody on staff who's a retina specialist and whatever people he would need, so that when we got there, they were prepared to help.
Well, I went through feels like 30 billion tests and surgery. And the bottom line is they don't know why my eye hemorrhage.
After that I went through a period of being fearful because they did not know if that would happen to my other eye.
And now all of a sudden my vision started going. It was getting better and I had to only read two more letters on a line and I would get my driver's license back and instead of my eyes getting better, they got worse. And now they're slowly getting bad because my veins in my eyes are very fragile, so they bleed.
So, I do something which is not very healthy, but I do it. I checked my vision. One time I would check my vision like 10 times a day just to see what the changes are.
Sometimes the clarity is not there anymore or I'm losing color. And so, when that happens, I get scared and I worry. And one not knowing what to do. I get tired of trying.
I must say at times, this journey has been difficult and scary and hard. But when I listen to other people's stories and think to myself, well, if they did it and they could make it, there's no reason why I could not.
So when I listen to the podcast about what people have overcome, it gives me a lot of hope and courage.
I now have to start trusting people at a level I never have had to do, and I find that scary at times.
Something that I'm doing is instead of having a frown on your face, put a smile on your face and you can't smile and frown at the same time.
So basically, I am grieving. And some days are worse than others and some days are good.
But I find hearing what other people say and what they're going through is very good for me.
I don't listen for their story, to be honest. I listened for the hope that they give. That this was my problem and I was able to overcome it, or this was my problem, but I'm working on overcoming it.
And that makes me feel good.
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 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.
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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.