"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 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.
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Episode 42
For Cynthia, every story shared helps her on her own journey with vision loss.
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Episode 41
Living with low vision meant Karen was constantly explaining to others what she can and can't see. Then she found a tool that has made a big difference.
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Episode 40
Having to give up the car keys was traumatic for Eugenia. She worried about becoming isolated until she found a new way.