"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 78
When Cliff unexpectedly lost a fair amount of his sight, he felt overwhelmed. But with time, he found a way forward.
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Episode 77
Thomas is experiencing many challenges of late, including vision loss. He finds inspiration and hope knowing he's not alone.
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Episode 76
Nikki has lost her vision due to a rare autoimmune disease. While she appreciates positive bits of advice and encouragement, she also stays grounded in the struggles she's facing and knows others do, too. She's feeling the loss.
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Episode 75
When a favorite hobby became more difficult for Dianne due to glaucoma, she learned to tap into something else. It turned out to be the ideal thing.
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Episode 74
Peter's sight slowly but steadily worsened over the course of several years. When he had to give up driving, his self-image took a hit. Working through his emotions has helped him cope and adjust.
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Episode 73
Sherry's vision loss has been gradual yet relentless. Asking for help to do things she used to be able to do on her own is a challenge for her, as it is for many. But she's finding some new tools and new ways to do things.
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Episode 72
Carolyn lost much of her vision after several glaucoma surgeries, leaving her feeling angry and discouraged. But a familiar childhood story inspired her to keep trying, even when tasks seemed impossible.
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Episode 71
Learning he would never see again was heartbreaking for Shannon. Embracing what challenged him, Shannon discovered strength in the unfamiliar.
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Episode 70
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.
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Episode 69
Jack's vision has been declining for years. The hardest part for him is that it just keeps changing, so he needs to keep adapting. A routine Jack's wife put in place for the couple has helped him cope and adjust.
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Episode 68
Losing a fair amount of her vision brought with it a series of other losses for Dia. She began to feel depressed and very fearful. However, she gradually started giving herself pep talks and reconnecting with the things that bring her joy.
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Episode 67
Julia had always lived life on her own terms. So, when vision loss meant giving up her car keys, she used a white cane or her husband's arm to guide her steps, and kept going. Still, she noticed a change in how others treated her… until she made a decision she now calls, "the best thing I ever did."