"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 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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Episode 87
Debbie has found a place near her that helps unleash her creative streak and her desire to give back to the community, a place where how much she can see doesn't matter.
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Episode 86
Doug was filled with uncertainty after realizing that the vision he lost was unlikely to be restored. His anxiety grew as the silver bullet he hoped for never materialized. But he did find things that helped him manage and continue to live his life with purpose.
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Episode 85
When Nancy's vision deteriorated to the point that it was challenging to navigate streets of a neighborhood she walked for decades, it was humbling. But a friend's comment surprised and inspired her. Her perspective started to shift.
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Episode 84
Macular degeneration was no stranger to Valerie, her mom had the condition. Early into her own diagnosis of AMD, treatments worked well and her vision remained stable. Over time, however, she noticed more significant changes, which became increasingly challenging both emotionally and physically. That's when she began to change her perspective, and that change made all the difference.
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Episode 83
Scott went to multiple specialists in search of a cure for his eye disease. He would often sit and just think about going blind. But one day a son's random comment took his mind off of everything and reconnected the family.
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Episode 82
When Elizabeth lost her vision in an auto accident, she went into survival mode. As she began to rebuild her life, she found certain connections and activities helped her focus less on her limitations and more on a renewed sense of purpose.
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Episode 81
When Eddie lost a fair amount of vision, she was scared and didn’t know how she was going to cope. But she found a source of strength and inspiration.
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Episode 80
As Kenneth lost most of his sight to glaucoma, he was feeling increasingly isolated and alone. Then he made a commitment, forcing himself to find ways to stay connected to the rest of the world.
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Episode 79
When Carol Lee was diagnosed with age-related macular degeneration, she was angry and frustrated. Over time, resentment began to fade a bit and the shock wore off. Gradually, her perspective started to shift.