"It's finding people that do understand"
As Mary's vision worsened, the life she'd always known began slipping out of reach. She wasn't sure where to turn or what might help. But a chance meeting changed things for her in ways she now hopes to pass on.
Hadley
“It’s finding people that do understand”
Mary: I would be very emotional when I tried to do something, especially in public that I thought I could do and I couldn't. You've been doing these things all your life and suddenly you can't.
Marc: This is Hadley’s Insights and Sound Bites, where people facing vision loss share what has helped them cope and adjust.
Mary: My name is Mary. I'm from Tinley Park, that's a town south of Chicago. I've had some macular degeneration since 2017, but it really got bad about a year ago. When I went to the retinologist, he just said, ‘oh, I'm terribly sorry. There's nothing we can do.’
I didn't know where to go from there, what I could do or it was beginning to interfere with reading. I hadn't been reading a lot, you know, less and less and now it really was real hard to read. Then it was starting to be kind of questionable whether driving was safe or not. And so, my world was cut back to really having a very hard time reading anything even with magnifiers and the loss of driving.
I happened to see a woman that I knew and directed me to a low vision support group in this area. I went there and they were talking about other things, about Lighthouse for the Blind, about Hadley, about different magnifying glasses that would help and other devices out there that would might help. So, from that point on, I am getting some direction.
I would be very emotional when I tried to do something, especially in public that I thought I could do and I couldn't. The tears would just come. And I found that was very common, that you've been doing these things all your life and suddenly you can't.
Someone described it as a death and you go through the stages of death. But it is a death, a death of what I could do and what I can do now.
It's just trying to adjust to a different way of life for the rest of my life. But it's hard after I'm 80, so after 80 years of independence now I have to become dependent in a lot of ways.
I find the most support from people in similar situations. And then you find that there are some people that have a lot more trouble, but yet they're coping with things. But I am trying to make myself a priority to find out what I can do. I think part of it is time, but part of it is finding people that do understand that even though you are walking around and you're looking like you're doing perfectly fine, it's not perfect and none of it's going to be the way it was.
My family doctor said something about who helped you find these things? And I'm thinking mostly it was me just asking everybody or anything that would help that I thought would help me. And I do feel like better. And maybe part of it probably is just time.
At first, I was a little angry with my retinologist. I told him about the support group. He said, oh yeah, we tell our people about that. I'm thinking you didn't tell me.
So yeah, I am really on feel like I'm on a want to be on a mission to help other people that were in my situation and never found real direction. You know, where to go and how to deal with things.
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 91
When Susan began losing vision, she grew fearful about the future. But she found a source of hope and courage.
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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.