"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
-
Episode 71
Learning he would never see again was heartbreaking for Shannon. Embracing what challenged him, Shannon discovered strength in the unfamiliar.
-
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.
-
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.
-
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.
-
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."
-
Episode 66
When the scenario Leighann had feared for years finally happened and glaucoma took much of her vision, it hit her hard. But her desire to keep living meant challenging herself—even when it scared her.
-
Episode 65
Michael's vision loss led him down a long, uncomfortable road, discovering what he had to let go of and what he could still hold on to for his future. He continues to challenge himself to try new things.
-
Episode 64
Tamisue's eyesight has diminished to the point where she feels stuck between two worlds—not enough vision to function as she once did, but not fully blind. She fears her world going completely dark. However, an addition to her life has made a tremendous difference for both her and her family.
-
Episode 63
The loss Tom feels regarding his vision is complicated because it is ongoing. Acceptance has not come easy. Through the years, though, he has come to approach life a bit differently.
-
Episode 62
Anne's declining vision had her feeling down and sorry for herself. But two gifts—one she gave and one she received—helped turn things around for her.
-
Episode 61
Glaucoma advanced to the point where Ron found it too difficult to do the volunteer work he loved in retirement. Still, he found a way to pull himself out of the hole he felt he was in and continue to give back.
-
Episode 60
Diabetic retinopathy has taken more and more of Charles's vision. To cope, he is learning new approaches to life AND leaning into areas of passion that don't rely on sight.