"Unless you go through it yourself, you don't know."
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.
Hadley
“Unless you go through it yourself, you don’t know”
Valerie: All in all, it's been emotionally and physically hard to adjust to my vision loss because I've always been independent and private person.
Marc: This is Hadley’s Insights and Sound Bites, where people facing vision loss share what has helped them cope and adjust.
Valerie: My name is Valerie and I'm from Cicero, Illinois.
My mom had macular degeneration, and I know it runs in the family. I was also a smoker, which doesn't help with macular degeneration. And so, I noticed a change in my vision, I used to go to the eye doctor every year and all of a sudden I found out I had wet AMD. I had gone to a retina specialist then. So, I started getting shots. It was in my left eye. And I got shots every month for about two years. And then I guess I went into remission and I didn't have to have shots anymore. I was recommended to take PreserVision, which I had been taking.
So, I was doing okay going to the retina specialist three times a year just to have my eyes checked and everything, and slowly they've been getting worse because now I am 80 years old and so I've noticed changes.
My left eye was always the worst one, but now the last time I went to my retina specialist I asked them about this geographic atrophy, which I heard the commercial on TV and everything, and he said yes that I had it in my right eye and the cells are dying off, I guess. So, I'm going to start injections in my right eye to try to save what vision there is left in there.
All in all, it's been emotionally and physically hard to adjust to my vision loss because I've always been independent and private person. Finding Hadley has been a great help. I also belong to the macular degeneration site and it was good to talk and listened to what they had to say. I would read their emails and stuff.
And now I've gotten the talking books, which is a great help because I can no longer read except with a magnifying glass, so that has been a big help. I try to stay active with the senior citizen groups. My son lives with me, which is a big help because he reads stuff for me that I can't see in an instant. He sees how I struggle. My other two children aren't living with me, so they don't see it. You can tell them but unless you go through it yourself, you don't know.
Other than that, I'm just going along every day trying to adjust, because I have other health issues too besides the eyesight, so it's just an everyday journey. But I think the main thing for me is just listening to other people, the senior citizens, and I find out that, yeah, I mean I have vision loss but some of them are in really bad shape, and they keep their spirits up and this helps me, I think, say, "You don't have it so bad, really. It could be worse. And this is what you have to go through.” And there was an old saying that, “to get through it you have to go through it.” So that's what I'm doing.
Vision loss is a silent thing. You don't see the handicap. You don't see that. You see people and they look normal. They're wearing glasses, okay, you think they can see everything, but you really can't.
"Well, I'm just going to sit here and be depressed because my life is over. It's getting worse." That's how I thought I was going to be in the beginning because I was very independent, did everything myself, and it's hard to ask for help. But once you just decide, “hey, this is what I have to live with and let me try to make the best of what I have and go forward and take every day as it comes,” I think that helps a lot.
And when I go into a fast-food restaurant I can no longer read that menu behind the counter. So, I have to ask the girl, “can you tell me what's on that sandwich or can you tell me?” And people, I found out, when I tell them I have low vision, they're more than happy to help.
Marc: Insights and Sounds Bites is brought to you by listeners like you. Who believe no one should have to face vision loss alone. Consider making a year end gift to support this show and all of Hadley’s free resources. Vision HadleyHelps.org/Give or call 1-800-323-4238.
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 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 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.
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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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